Liddy's Journal - How Do I Feel Now?

A Tip from Liddy: Find a way to work thru your feelings. For some, this is talking to others in a similar situation. For me, it has been documenting my feelings and thoughts in a journal. Once I have been able to examine a thought, feeling, or frustration in this manner, it is much easier to move past it to the next one. :)

4/4/02: I had an incisional biopsy of a soft tissue mass located at the base of my hamstrings on my left leg. They were going to remove the tumor, but didn't because the path report wasn't definite that it was benign. Photo of tumor.

4/5/02: Tom and I came home from the hospital. I'm walking with a cane, but am getting sharp pains every few steps.

4/6/02: The incision doesn't hurt that much. There's quite a bit of bruising. I'm having very sharp pains in the back of the calf when walking, so I'm using crutches. The pain is probably due to manipulation of the nerve during the surgery. I had many visitors which made the day pass more quickly.

4/7/02: The sharp pains have increased; now I can't straighten my leg without them kicking in. Mom and Dad dropped by with a meal; Dad brought his digital camera. Incision photo 1 (April 7th) and 2 (April 21).

4/9/02: The bruising around the incision is reaching the itchy stage. The sharp pains are still present, and the burning is still taking 2-3 hours out of my night. Tom started me back on a light upper body workout.

4/11/02: The staples came out today! I got a prescription that might help with the burning pain. I'm relieved to finally get the path report; it is malignant. I spoke with the neurosurgeon about the pain when walking; he didn't seem to think it would go away very soon. He had a theory about the tumor being swollen and this is putting pressure on the nerve when I straighten the leg. I can start biking again (one leg only). He had never heard of a Ewing's sarcoma/PNET in a nerve; he promised me pictures taken during the surgery so I could prove where the sample from biopsy came from.

4/12/02: What a long day... 12 hours of either seeing doctors, or waiting to see them. And, no time for biking :( My first appointment with an oncologist at Memorial Sloan-Kettering.

Appointment details: The day started early with 8:00am appointment with an oncological surgeon Dr. Murray Brennan. He is known world wide for his sarcoma work. After a quick history and exam, he looked at my MRIs and path report. He said that this type of tumor responds well to chemo, and suggested that we see Dr. Robert Maki, a medical oncologist. Dr. Maki fit us in at 3:00; we spent the hours between the two appointments learning more about Ewing's sarcoma/PNET via the web. (MSK has VERY nice waiting rooms, with a few terminals for web access.) Dr. Maki's fellow took a history, and did an exam.

Dr. Maki joined us, and almost started off right away with "This is a very rare cancer." 25-40 cases in the US annually. He treats 6-8 per year. He described the treatment, and listed the side effects of the chemo (loss of hair, mouth sores, higher risk of infection, fatigue, etc.). He mentioned the additional tests that are needed (CT scan and bone scan).

He described Ewing's sarcoma a bit. Not much is known about why they occur. He mentioned that my case is rare; normally, the tumor is discovered a few weeks or months after the onset of pain. (I have had pain for over 7 years now.) And, this is a cancer found in children, not adults. I will see him again on April 19 to discuss the results of my CT and bone scans, and to schedule the first chemo.

So, what's the prognosis: "If you were much younger, the prognosis would be 70%, but you're an adult, so it's not as good." (I'm only giving this number because a number of you have already pointed me to articles and papers from medical databases, etc., saying that it doesn't look so bad. I don't think it does, but I just want you to know what the doctor thinks.) So, what's the prognosis for the nerve: "The nerve is shot." It probably won't get better. There's hope that the pain in the leg will improve soon. If not, they might consider surgery within a month or so; there's hope that the pain in the foot will go away completely after I am treated.

4/13/02: The incision is finally bothering me. There's quite a large bruise around it, and part of the bruise is throbbing. Perhaps it is due to the poking from the doctors yesterday? I have had a cold for a number of days, and it is in the cough stage now; my voice disappears every now and then. No change in the pain on walking.

4/14/02: I found a way to walk without crutches (and without crouching); I tied a yoga block onto the bottom of my foot. Since the leg doesn't straighten, I don't have the pain. A friend helped me modify the bike on my trainer, but I didn't go for a spin yet.

4/15/02: Biking with one leg is difficult! I only did 23 minutes, with 3 breaks. Part of the incision is "bulging," so we went by the neurosurgeon's office; he said that it looks bulgy, but not infected. He warned us that the tumor will look a lot bigger once the surgery swelling has gone down. This is because he didn't stitch the fascia of the hamstring muscle back (I didn't even know that he cut a hamstring muscle!). My first oncology appointment at Columbia.

Visit details: April 15 appointment We met with Dr. Mary-Louise Keohan at 3:45. She took a history, and then performed an exam. She then described the treatment, and discussed side effects. She said that this treatment was the standard one developed for children, since this is a children's cancer. The only real difference between her suggested treatment and the one from MSK is that some of the chemo would be in-patient. One of the drugs, ifosfamide, can cause bladder problems. So, another drug, Mesna, is administered at certain intervals. These intervals would cause a 12-hour chemo day. We had fewer questions for her since we had gathered most of our information already. She treated 10 or so cases of Ewing's sarcoma last year. In addition to the CT and bone scan, she would order a PET scan and another MRI.

4/16/02: The bone scan appointment today convinced me that I'm not ready to be up and about yet. My leg ached much more than normal, and by the time we got home, I felt like I had crutched for blocks. (I didn't; we drove to the testing site.) I'm getting back on a med that helped me sleep thru the night even if the foot is burning.

4/18/02: I'm starting to get nervous about the chemo; Monday seems so soon.

4/19/02: All of these tests and hospital trips are really starting to wear me out. We left this morning at 5:15, and just got back at 1. But, now, I'm a proud owner of a port-a-cath. My particular one is the dual-lumen system. Once the swelling goes down, it will look like a pair of Coke bottle caps under the skin right below my left clavicle.

4/20/02: I got my hair cut short; Tom thinks it looks cute. I was able to donate hair to Locks of Love, a non-profit organization that provides hairpieces to children suffering from long-term medical hair loss.

4/21/02: We went to a surprise birthday party for my mother, and received lots of support from friends and family. I received many complements on my haircut, which I needed to hear; I have never had short hair. I finally figured out how to hug people while standing with crutches (you lean towards them to stop them from putting you off balance). I biked 25 minutes; it was only the second time since the biopsy, and is still difficult due to an uneven pedal stoke.

4/22/02: Week 1: The first day of chemo went smoothly. It took 4 hours, but the first day of the 3-day cycle will take 3 in the future. The only side effects worth mentioning so far is a funny taste in my mouth and some foods taste nasty. And, I got pretty queasy in the evening. I got the results from the scans and things look okay; there are a few points that have to be explored more. The MRI showed that the tumor definitely has grown.

4/23/02: The second day of chemo went smoothly. The doctor wasn't happy with my fluid intake, so I got an hour of saline solution. (Water was really nasty yesterday and this morning.) The queasiness came at 6pm, but not as strong as yesterday. I got a few more prescriptions to help with the queasiness; we'll see if they help. By the evening, water still tasted funny, but not nasty. Tom and I worked up on my upper body, and I biked one-legged for 20 minutes. Assuming I feel fine, I should be going into the office on Thursday or Friday.

4/24/02: I found out today why I have a port instead of using a vein in the arm each time. One of my drugs burns tissues; if you were to get any of it on skin, a plastic surgeon would be needed to fix you up again. I again got an extra bag of saline. Today was the last day of chemo for Week 1. The queasiness started much earlier. I'm happy that I don't have to go in to Columbia tomorrow.

4/25/02: I'm at the office today. Slightly queasy all day.

4/26/02: Aside from a sore throat, I feel like a pre-chemo person!

4/29/02: I'm injecting Neupogen to force my bone marrow to produce white blood cells. This seems to make me very bone-achy, esp. in the shoulders. So, using the crutches is just not comfortable.

4/30/02: Less achiness today. But, I'm having problems breathing deeply. And, moving around (e.g., hopping from the bedroom to the living room) tires me out.

5/1/02: I had blood work done today to determine if I can have chemo next week. This depends on my white blood count being in the normal range. Mine was way too low... :( I also found out that some of the side effects I am neutropenic. I am having aren't expected for me (based on my drugs). For example, I shouldn't have problems breathing. So, I got a chest x-ray done to see if there's something else going on. The doctor examined me, and said that the tumor seemed smaller/softer, and the fluid due to the biopsy was decreasing nicely. Generally, this was a low-energy, spend 7.5 hours at the hospital kind of day.

5/2/02: I have much more energy today then yesterday, but that might be due to not doing anything but sitting on my bed working. I also am having less pain in the foot (it woke up 2-3 days ago and has been talking steadily since), perhaps due to the use of lidocaine patches. Tom lowered the seat on the exercise bike for me, just to see if I can pedal without pain, and I can (with both legs). Now, I just have to get permission...

5/4/02: I was able to walk today!!! It's the not the most carefree walk in the world, nor is it entirely pain free, but it's not all that slow, and I don't think I look like an ape while walking. I still have a sore throat and burning in my esophagus (esophagitis).

5/6/02: I got approval to cycle again!! I biked for 20 minutes on the exercise bike; the first time with two legs since April 3; some of the muscles complained, but it felt nice. I'm still walking, and I thought I was doing a pretty good job of it, but the doctor that I saw today wanted to know why I was limping so much. I got a new drug to try when my foot pain starts again. I have a cough that seems related to the sore throat.

5/7/02: I organized my hats this morning. I biked for 30 minutes on the exercise bike. Tom and I went to a meeting at the Gilda's Club; "the clubhouse is a place where people with cancer and their family and friends can come to find inspiration in a home-like, community atmosphere with others who are living with cancer." I think we'll enjoy their many events including yoga classes and support meetings.

5/8/02: I'm not neutropenic anymore; my white blood count was 12. We're having salad for dinner tonight! We're on for in-patient chemo next Monday. The oncologist, while examining my tumor, said "It [the treatment] is working." I also saw the neurosurgeon; he said that my incision is 75% healed. He told me to increase my miles slowly, not to start with biking for an hour. He suggested PT if my walk starts to hurt the hip of the good leg. He also said that he made calls to other neurosurgeons around the country, asking if they had seen a case resembling mine, and the answer was no. I am not feeling the burning in the esophagus today. I biked 45 minutes today on my bike on the trainer, almost at the same cadence as before the biopsy.

5/9/02: I was at the office today. It was nice seeing friends and coworkers, and participating in a meeting face-to-face instead of over the phone. Even though I was low-energy when I got home, I biked for 55 minutes. (What am I going to do during for the in-patient stay for exercise?)

5/10/02: The extra walking that I did in the office yesterday gave me calf soreness. Aside from the loss of hair and tiredness, I feel like a pre-chemo person (with a sore throat). I biked for 55 minutes.

5/11/02: Tom and Mom shaved my head. I got tired of losing hair all over the place. They thought I looked cute with a patch on top, so I have a punk hair cut now.

5/12/02: In looking more at my hair cut, I think I look like a Dr. Seuss character. I biked for 45 minutes.

5/13/02: Week 4: I can log in from the hospital, and I can also bike. I asked the nurse about exercise, and she brought a bike into my room! It turned out that the bike was too loud, but there was another one in the hallway. So, Tom put it in the patient/visitor lounge, and I biked for 50 minutes there. It's 6:30 now and I haven't had any chemo yet. They have to measure my urine output for 6 hours before I get any chemo. My roommate keeps her TV on all of the time, so I might be spending quite a bit of time in the lounge.

5/14/02: I got my drugs a bit early today, between 5:30 and 9. I then will receive Mesna at 1am and 5am. I currently feel very few side effects. I biked 55 minutes on the exercise bike here at the hospital. I received PT suggestions to improve my walk; tomorrow, we work on walking on stairs and biking. I have received complements on my hair cut.

5/15/02: Chemo started at 2:30 today. Again, no side effects worth mentioning, aside from fatigue. I'm not even interested in biking! Dr. Lee, the orthopedic surgeon who will most probably remove the tumor, stopped by. He said that there is no chance that surgery won't be needed, and that this means that the tibial nerve goes.

5/16/02: Extreme cancer fatigue. Dr. McKhann, the neurosurgeon, stopped by to chat. He thinks the tumor is smaller; his metric is the incision (he only made the incision as large as needed, and now it is too big for the current tumor). We spoke a bit about reconstructive surgery for the nerve, but I wasn't taking enough information in.

5/17/02: Extreme cancer fatigue. Tom got me home at 8pm! 5 days of in-patient chemo was quite a different experience than the one-day or 3-day out-patient experience.

First in-patient chemo experience

NOTHING could have prepared my for the fatigue of the past week. I don't know if it was the new drugs, the noisy roommate, the unappealing food, the sore leg muscles due to walking the right way with the PT, or the trapped feeling of being in the hospital for 5 days straight.

My day would begin either at 6 or 8am, when a nurse would introduce herself or himself to me. (I would sometimes sleep thru the 6am tending.) If it was 6, it was probably the nurse from the night before, so no introductions were needed. Blood would be drawn, and vitals would taken. I have low blood pressure normally, but I think I remember having one of the nurses concerned over a 96/40 reading.

At some point, the hourly trips to the bathroom would start. I know that my bladder needed to be protected, but did the IV really have to push THAT much fluid into it? And, IV fluids don't stay in the bladder for any amount of time; they seem to want to flow right out. To get to the bathroom, I first had to sit up... not that easy in the hospital bed. Then I had to identify where the 1-3 IVs were. For a fully sighted person, this might have been easy. For me, it could take minutes. Then, I would unplug the IV machine, and untangle the pole from the other wires on the ground at the base of the pole.

Once I made it to the bathroom, there was a 50/50 chance that my roommate would be there. (She would always be using the mirror, and not the toilet.) I would stand, crossing my legs, until she noticed me. (Crossing my legs might have worked when I was a little girl, but it didn't do anything at all now.) She would reprimand me for not making myself known. I would enter the too-small bathroom with my IV pole/machine, place my hat under the toilet seat, and tinkle. I had to measure the urine to make sure that my kidneys weren't failing. The hat (the measuring device) only seems to hold half of what my bladder does, which meant stopping in the middle, etc.

So, back to the bed for another 40 minutes of rest. If I was alone, I might nap, read/write email, work, or listen to my roommate's TV. If I had a visitor, I might nap or play cards. (Thanks for understanding, visitors!!)

During my 5-day long stay, I went from having enough energy to bike an hour for the first two days, to having not enough to eat in the later days. (Perhaps I would have felt differently if the food were more appealing.) I'm not a fan of exercise bikes [I like my own bike on a trainer], but those two rides felt nice. I think the fact that my IVs are from a port instead of my arms/hands helps a lot with making biking during that time pleasurable.

Some of my blood work came back indicating that I was anemic. The values were so low (when compared with the previous day's values) that the doctor ordered another test. Those can back fine. But, for a while, they were threatening with doing a 2-unit blood transfusion. They did give me a shot of Procrit, which is a man-made version of erythropoietin.

What did I learn?

  • Make sure that your visitors don't mind if you take a little nap.
  • Even though having the window view is nice, the other bed is closer to the bathroom.

5/19/02: Am still very fatigued. The burning in my esophagus (esophagitis) is back. Chia-Ling and I planted a few impatiens in pots for the stoop and in the backyard. I biked for 20 minutes, but had to stop due to a flat; Tom had to coerce me onto the bike. God only knows how I can get a flat on a trainer!

5/20/02: Fixed the flat; can't find the reason for these flats. I biked 30 minutes; it felt like I was going uphill the entire time. I have quite a bit of swelling on the outside of my ankle that might be due to the brace that I have been biking with for the past few days.

5/21/02: Feeling a little low.

Liddy's Haircut - May 2002

5/22/02: I had an oncologist appointment today; it went well. My blood counts are on their way down, which means more fatigue in the coming few days. I made a quick stop in the office to say hello to friends. While I was there, Cliff took pictures of my head, so those of you who aren't local can see the hair cut that Mom and Tom think is so cute. My appetite returned somewhat; Tom was frustrated that I had cravings for "un-healthy food."

5/23/02: I had breakfast at 4am; it feels kind of weird to want food after not wanting it for 7 days. My tummy isn't that tender anymore, and my energy seems good in the AM.

5/24/02: Energy is very poor; I spent 8 hours of the day in bed. I was able to review a paper, but wasn't "working at the computer" for more than 2 hours. I ran my first fever; it got up to 99.2.

5/25/02: I brushed my teeth while Tom was out running errands; bad move on my part. I'm not sure why brushing my teeth causes me to vomit unless Tom is rubbing my back, but that "side effect" hasn't gone away yet. I was worried that today would be another "in-bed" day, but I watched Tom and Daniel work in the backyard for 3 hours. They were tearing down tar-paper from the back of a shed which makes up 1/4 of the side of our backyard. I think I'm finally learning that I should eat the moment that I feel hungry since the hunger lasts only a very short time. I had 4 small meals and that worked well. Tom gave me a Procrit injection to help build my red blood cells (and give me more energy). We will be trying these injections for 4 weeks, which makes me think that I will have a few weeks of low-energy days. We found out that a Procrit dose is $500, and a neupogen dose (for white blood cell growth) is $350. Thank God for drug insurance! I biked for 35 minutes; it would have been longer, but the biking shorts put too much pressure on my tender belly. Walking from one end of the apartment to the other still winds me, so it's great that I have something like biking for exercise.

5/26/02: I'm having some very low energy days, along with some powerful cramping. Since I don't have a laptop working from the bedroom yet, my how-do-I-feel entries have suffered. I just backfilled the last two days. I read last night in one of my cancer books that one of the meds that I have been taking for side effects can cause the severe abdominal cramping I have had the last few days; I didn't take it last night, and feel better already. I started rereading Lance Armstrong's book, "It's not about the bike"; it's about his recovery from testicular cancer. It turns out that some of my chemo drugs are the ones used for testicular cancer if you don't want your lungs affected. They aren't used all of the time 'cause you have more nausea and vomiting and short-term discomfort. Of course, that's not quite what I wanted to hear, but it was nice to see Lance discuss some of the side effects that I have been feeling; it seemed very different to see them in a book of that sort as compared to a short card listing them in short phrases. [Thanks again, Chee Yong, for the book.] I biked for 35 minutes; it would have been longer but 60 minutes was rather dull.

5/27/02: I biked for 40 minutes. Tom tried to get me to go for a "real bike ride," but I'm scared. The leg with the tumor is the one that I put down at stop lights and it doesn't seem that stable.

5/28/02: I biked for 45 minutes. Tom biked along with me on the exercise bike.

Liddy in the Garden, May 2002

5/29/02: My energy level is finally starting to move back up! I had labs today, and my white blood count is out of this world (a 36, when the normal range is 3.5-9)! But, I'm still anemic. Mom came with me today to the oncologist and we found out lots of information. For example, the insurance company defines you as having anemia when your HCT is below 10. We also learned that the doctor starts to worry about your platelets when the count is below 100; luckily, I haven't had problems there yet. When I pressed for info to read about my cancer, the oncologist gave me a couple of names that I will be looking up (so, I will soon be updating the information about Ewing's sarcomas that I have collected). We also discussed the fact that I receive vincristine every week; she said that some believe vincristine to be the most important drug in my protocol (and, it's the one with the least side effects). One of its side effects is pain and tingling in your fingers and toes; they stop the drug when you can't put a button through its hole. The tumor is harder than it was the previous week, and seems to be bigger. Before the doctor's appointment, Mom planted tomato and pepper plants for me (since I didn't know what my WBC was, it was safer to have someone else play in the dirt for me). [Thanks for the plants, Len and Inga.] I biked for 50 minutes.

5/30/02: Seems like another good energy day. Jeff and I bought ceiling fans, which he installed in the guest bedroom and dining area. Tom went to a Eating for Energy talk at the Gilda's Club in NYC, while I went to a Wellness group. I didn't bike, but had to walk quite a few blocks to get to the Gilda's Club. I was looking forward to noticing people staring at me, but I didn't see anyone. Tom commented that I fit right in (with my mostly bald head) with the Village, which is where Gilda's Club is close to.

5/31/02: The walking from yesterday really tired me out. I had shortness of breath again; a long nap in the afternoon helped. I biked 45 minutes.

6/1/02: My energy level seems a little reduced from yesterday. We went out for breakfast with Jon. After two naps (for me), we went for a 45 minute bike ride outside. I ran a 99.4 temp for most of the evening; my tummy didn't settle down either.

Notes from First Real Bike Ride

If you don't know of my fascination with cycling, you might as well hit the back button now; this just won't be interesting to you. So, Tom was finally able to convince me to get on my bike and go for a ride outside. This was the first outside ride since the biopsy surgery on April 4. I had all sorts of fears (what happens if I get a flat, what happens if I can't pedal fast enough, what if I can't unclip my foot in time, what happens if I go too slow and Tommy passes me [the largest fear], ... all of these fears).

I had to find my helmet and shoes. I took them out of the garage when we cleaned it a number of weeks ago since I didn't think I would be using them soon. To make sure that my head didn't burn, I wore a coolmax skull cap. [Thanks, Dave.] I had to adjust my helmet by over 2 inches. (I really must have had a lot of hair!) Then, we had to get our bikes ready. We probably should have given them a tune-up, but instead we just put air in the tires, and adjusted my rear wheel so it didn't rub on a cable.

The first pedal stokes are hard; those are the ones where I notice the most that I really only have one leg. But, once I'm going, it seems to be fine. I was surprised how comfortable being back on the bike was. (Due, in no small part to my bike on the trainer having the same frame as the bike I was riding today.) I would love to report that I biked the same number of laps as before the surgery, and that I had a wonderful cadence, and passed many other bikers. But, in truth, we biked only 2 laps (2.5 miles each, plus 3 miles to get back and forth to the park), and I started to feel tummy problems. (I skipped lunch since I wasn't hungry.) So, we came home. But, for 30 minutes, I felt the freedom, and exhilaration of being on the road. I found it more difficult to fool myself that I'm not short of breath. On the trainer, I tell myself that it is set for going up a hill, even tho it isn't. When you're biking on a flat surface, how can you tell yourself you're on a hill? So, instead, I used the wind as an excuse. God, was it windy today!

Tommy, as the wonderful spouse he is, stayed behind me (so far behind me that a few times I thought I lost him) and complained about how out of shape he is, and how tough the wind was.

6/2/02: Lisa came to lunch; after lunch, we walked to flea market that was being held in the park a block away. I was able to walk around for an hour, sitting occasionally. I would get out of breath, and had general fatigue. After my nap, Tom and I went for another outdoor bike ride; 3 laps (11 miles), an hour. As Tom and I were rounding a corner during one of the laps, a guy passes us both. As he passes Tom, he says something that I don't hear 'cause I am too far in the lead. When he passes me, he asks if I always let [Tom] draft. That made my day! Tom shaved my head, and gave the tuft a trim. I like the smooth head much more than the stubbly one.

6/3/02: Week 7: Day one of three days of chemo. The nurse has problems with my ports; neither wanted to give blood. With some work, the inner port started to get blood. My WBCs dropped, but still in the normal range. My HGB continued to drop, making me even more anemic. I seemed to handle the chemo well, but ended up taking a few naps. I spent the night at the folks, so no attempt at a ride.

6/4/02: Karen and Lucas brought me into the the treatment center; thanks much. I got sick in the treatment center, right before chemo time. It seems that my anti-nausea drug wore off a bit too quickly. I was out of sorts for the rest of the day. I wasn't sure what I could keep down for lunch, so I had ice cream with banana. No attempt at a ride.

6/5/02: Last chemo for the week! I again got sick in the am before chemo. Since I wasn't looking too peppy, Susan, my nurse, gave me a private room, which was very nice. They gave me an extra bag of fluids, and Tom read to me. Tom thinks I have chemo brain.

6/6/02: When Tommy got home from work, he decided that I wasn't drinking enough, so he put me on the bike for 45 minutes; I always drink a few liters when biking. I'm still having problems with nausea and vomiting. Jon came to dinner, bringing two wonderful desserts.

6/7/02: I'm trying Compazine for my problems with nausea and vomiting. The sore throat and burning in my esophagus (esophagitis) started; it seems to kick in 5-6 days after chemo. 45 minutes of biking.

6/8/02: I got my first stare! Tom and I were driving slowly in Jersey City, and a guy in his 30's walks across the street in front of us. He looks at me, and continues to look at me while crossing, almost walking into the car. (Of course, I could have been stared at for weeks, and just hadn't noticed due to my poor visual acuity.) Since it is Saturday, Tom and I went for an outdoor bike ride; God, was it windy! 2 plus a little laps; 50 minutes. Tom tried to make me feel better by saying that Lance probably didn't train during his chemo, but, according to his book, he did. I have received a number of emails and phone calls recently asking how I'm _really_ doing, so either my public isn't reading my ramblings, or I'm not giving the details that are desired. Introspective view of my treatment.

6/9/02: No queasiness today! But, I'm having problems drinking water. It feels like my throat closes up. Tom gave me my weekly head shave. I asked him to try to even out the tuft part; he wasn't successful. As Jeff put it: "Tom didn't miss his calling as a barber." No bike ride; tummy too tender. And, I should take a day off every now and then, right? I did an upper body workout with weights.

6/10/02: I'm still having problems drinking. I had a very good day today; Jeff brought me for an "outing." I didn't take a nap, and had a good work day. Biked 45 minutes; I would have gone longer, but that's the length of a Buffy episode.

6/11/02: I can drink with a spoon. I'm not sure why that is, but, hey, it works. We went out for Indian food, which seemed to cause the esophagitis to return.

6/12/02: Liquids are going down okay again! Since I had an afternoon doctor's appointment, and a Gilda's Club meeting (for Young Adults) this evening, Jeff and I went for a bike ride this am. 3 laps (11 miles). God, was it windy. Jeff was coasting for quite a bit of the ride, and talking up a storm, so I just _knew_ that I am still anemic. And, my afternoon blood work didn't disappoint me: HGB of 7.9. Definitely anemic! (I'm also neutropenic again, with a WBC of 0.4.) Mom brought me to my doctor's appointment; we went with a list of questions, some triggered by information that I have gathered from conversations with a man who had a Ewing's sarcoma in his sciatic nerve. We learned: I have one more cycle of chemo before surgery (YEAH!); surgery will probably be in 5-6 weeks; the amount resected will be based on the size of the tumor before treatment began, not the current size; radiation might be needed after the resection if the borders are not clean; the doctor agreed with me that the tumor is shorter and fatter, and she didn't say this was bad; the purpose of my current chemo is to reduce the chances of distant disease (metastasis), and not to shrink the tumor; she's giving me some weeks off because she said that I've had enough vincristine for a while (but she might use the drug again later). The Young Adults meeting was enjoyable; I think I'll be more comfortable with this group then the other one that I tried. All of them wore wigs tho; I thought more people my age living in the city would be comfortable with their heads.

6/13/02: I'm starting to notice numbness in my finger tips. This is one of the side effects of vincristine. Biking for 45 minutes got me more out of breath than in the past.

6/14/02: I spoke with the doctor today about blood transfusions; due to my general health and age, she wouldn't consider transfusing me until I couldn't complete a sentence due to being out of breath and/or my HGB was at 5. Neither of these are true in my case now. (She also mentioned that I would probably reach the maximum allowable amount of doxorubicin during the second set of chemo.) But, it sure would be nice to be able to do my biking and feel good about it. While biking my 45 minutes, I saw a first season Buffy episode that I have never seen. Aside from feeling out of breath and a bit tired (I'm taking late afternoon naps), I feel pretty good. Walking is somewhat painful, and I need to sit frequently if I'm going any distance (a block or two is still way too far for me).

6/16/02: We spent Saturday with Tom's mother and brother, and I spent today with mine. It was very nice seeing both. Both days were low pain days, and, aside from shortness-of-breath and the head-pounding, I'm a pre-chemo person.

6/17/02: I'm feeling very well. Of course, I haven't been biking in a two days (due to weekend plans), so I might be more weak than I feel. I took a nap. Jeff and I biked around Liberty State Park; 10.5 miles (for me; he did more), 53 minutes.

6/18/02: Max (Jeff and Leanne's dog) and I worked in the backyard for part of the morning. Tom and I biked around the park: 14.3 miles. That was 4 laps, and I was ready to do another! But, I'm still taking my nap.

6/19/02: The doctor's appointment went well. My blood is recovering well, so I can go in for in-patient chemo next week. (My oncologist will be out of town next week.) She asked Dr. Lee, the surgeon who might perform the resection, to see me on Monday since the chemo and other drugs make me dopey. She mentioned, kind of as an aside, that the two surgeons will decide what to do, but that they will bring in a plastic surgeon to do skin grafting. I hadn't even thought of skin grafts! Mom thinks I look like Bert, of Bert and Ernie. (For those of you who don't know what Bert looks like, see this Sesame St picture; Bert is the long-faced one.) I biked for an hour, indoors, due to rain.

6/20/02: I'm going to the office today! Even tho it was nice to see people, the office was too much; my bike ride was less energy filled than the previous few days; 10.5 miles, 58 minutes.

6/21/02: Yep, the office was too much. A lot of the burning pain in the ankle came back, along with the discomfort at the tumor site. I'm not sure what I did wrong (perhaps standing too long while visiting with people). I'll take today off from biking.

6/22/02: We visited Tom's brother and family at their home in Veron, NJ. They live on a golf course, and have joined the local spa. While Tom and Joe watched golfers tee off at the 5th hole, Bethany and I visited. We went swimming for a while. My foot wasn't happy walking barefoot on glass, concrete, etc. I got sun burnt... the top 4 inches of my thighs that most biking shorts cover, but swim suit doesn't.

6/23/02: Tom and I were supposed to go to a cancer conference. Instead, we played hooky: we went for a nice bike ride (14.3 miles, 68 minutes) and built a raised bed in the backyard.

6/24/02 - 6/28/02: We're in the hospital to get in-patient chemo (again). This time I know what to expect, so maybe it won't go as badly. Leanne was home when I got home from the hospital; it was very nice to catch up and chat for a bit.

Second In-Patient Chemo Experience

I will be taking much more detailed notes than the first time since I have forgotten much of my first in-patient experience. My oncologist said that that is not uncommon, but I find it frustrating never-the-less.

First day: Check-in went so quickly that I was in my new bed within 5 minutes of Tom dropping me off. Of course, that confused Tom; he waited for me in the admitting office for 30 minutes. To make my room more homely, I bought some paper flowers that Aunt Donna mailed me... very nice.

I think my roommate is dying. She has lymphoma, and they are trying to give her platelets. But, her body likes being low in platelets, so they just create these big bruises on her body. She is "confused"; the nurses and doctors and her family had a big meeting about how to change her drugs so that she is less confused. Her kidneys have failed, so she is jaundiced. She moans a lot, but they are quiet moans. She always has 2-6 family members with her, but they talk very quietly. The reason I think she is dying is because the doctor keep saying that things weren't going good, and that their primary function is to keep her free of pain.

I got started on my fluids at 11:30, and chemo at 3. Chemo ended at 6. The mesna started after 8. The nurse had no problems with my ports. (The last few times I had chemo, both ports were difficult to get a blood return from.) My oncologist is out of town, so her colleague is treating me. He dropped by to discuss meds. It turns out that the oncologist only left meds paperwork for the anti-emetics, and not the other 5 pills that I take. Tom stayed with me until a little past 8. Tom and I played skipbo, ate my hospital meals, and took naps. (Tom likes hospital food.) Dad visited around 4 for a while. Aside from a book that Dad offered to loan me and the side-effects of Mesna, I don't know what we discussed. Tom and I asked the nurse about finding an exercise bike for me to use. She hasn't found one yet, so no biking today. I am a little queasy; I asked them to begin my Kytril a little bit early. I settled down to attempt to sleep at midnight.

Second day: I was greeted by the night nurse for blood work at 6am or so. Since I have a port, another nurse had to do it. She came by within 30 minutes. I'm still queasy. My blood work came back well; WBC 6; HBC/HCT 9.8/39.5; PLT 274. I read a few technical papers; I didn't have all of the ones that I wanted, so I asked Wee Teck for them. Mom came to visit at 11 or so. She stayed until 3; we plays skipbo (Tom's new variant). We also split my lunch (I ate 1/2 a sandwich), and I napped some. Since I knew Bruce and Tom were coming, I wanted to make myself pretty, so I washed my face, brushed my teeth (which caused me to vomit), and changed clothes. Bruce came to visit for an hour or so. Tom was also here; they talked about books Bruce had recently read. I'm not sure what we spoke about. During Juan Carlos's visit, we answered quiz questions from a magazine that Mom brought with her. None of us did very well, but it also seemed that none of us knew the same information. Juan Carlos bought peaches and nectarines which have been very nice. Tom stayed until 9pm, trying to help me eat some. I have lost my appetite. I'm not sure why. It could be the inactivity, the food offered to me, and the constant desire to nap.

Third day: They got us up before 6 to take the vitals. My WBC is 5; HGB/HCT is 9.2/29.0; PLT 320. Sarah came to visit me in the afternoon. We played a couple of hands of skipbo. Karen came also, but got here right before the surgeon did, so we didn't get that long to visit. And Wee Teck was stuck in China Town traffic; he was going to drop by for a bit. I took a shower and ended up vomiting. Between the lack of hunger, and the vomiting, this might be my chance to lose some of those 20 pounds. I haven't been able to chase down a bike yet; it seems that this might be a week without biking. The smell of dinner turned my stomach. I had ordered salmon, thinking that Tom might like it. Tom ate the salmon in the visitors' room. He went out and got me a calzone later. My roommate seems to be getting much worse. Her breathing is very loud, and she doesn't seem comfortable. Her doctors have started her on a morphine drip. I spent most of my day napping or reading. Tom walks me around the floor during his visits. Sometimes I share my bed with him, and we just discuss how much we miss each other.

Fourth day: (Thursday) I vomited again today. Karen and Matt visited me this afternoon. We spent most of the visit in the 2 lounges to give my roommate some privacy. We were informed that she (and her family) would be moved to a private room. I found it very hard, listening to the woman breath (her mouth is 10 inches from my bed). And, I felt guilty since I had to ask her family members every time I had to use the toilet since I had the window bed again. (I cried in the morning, due to be my discomfort at knowing my roommate's situation. One of the nurses saw and told me [after giving me a hug] that different people are here [in the hospital] for different reasons.) We tried working on a puzzle that we found in the lounge, but I'm convinced it was either multiple puzzles, or many pieces are missing. Lisa came for a quick visit, based on the weather. She brought a little stuffed animal and many stories about her eBay garage sale successes. Wee Teck dropped by for a brief visit. He brought a meal for Tom who had already eaten my dinner. Wee Teck volunteered to set up my laptop so that I could surf the web. Mom and Dad visited after a book signing for a book with whom I have been corresponding with one of the authors. They bought me a copy of the book, and a picture of the authors. We discussed the information that I got from the surgeon.

Last day (Friday): Last day in the hospital!! I seem to only have energy between 10am and noon. Hopefully, this won't be true once I get home. I vomited again today. It's the brushing of the teeth. I seem to be fine until I start to think about brushing my teeth. I think it might just be when my gag reflex is the strongest. Tom got me home by 9:20pm. Nothing unusual in the check-out. As I was leaving, I saw members of my first roommate's family (the one with lymphoma). There were now 9 or 10 of them. Just waiting and comforting each other. I don't want to die that way. I'm not sure how I want to die, but having no awareness of life around me just doesn't seem right. And, it can't be healthy for my family. I haven't the slightest idea of how _my_ cancer causes death; perhaps I should look into this at some point.

So, what did I learn?

  • If the nurses and doctors say that they will be giving you enough fluids, LISTEN to them. I didn't the first time I had these drugs in-patient, and was not all that comfortable with the very frequent bathroom trips, etc. This time, I drank only enough water/milk to wash my pills down, and was much more happy.
  • My first roommate during my first in-patient chemo was difficult to deal with due to her TV volume, use of the bathroom, and her dissatisfaction with the nurses. I had an entirely different type of experience this time, and found it much harder emotionally.
  • Being home is very nice!

6/29/02: I fell in the morning. Second time in two days; I'm not sure why I'm falling. One of my ports is infected; Tom and I ended up having a frustrating few hours at our local ER room. We built the last raised bed today (we = Tom and Daniel). Rich and I pulled rocks out of the other new bed. We found all sorts of neat things (thick glass, ceramic tiles, lots of pieces of brick). Tom wanted to plant a profusion of colors for the raised bed, so we went out and bought flowers. I was hoping for perennials, but I only found annuals. Now, let's correctly state my contribution on today's gardening project: "Rich, can you turn that soil again; I think I saw a brick," "Tom, I think that yellow flower needs to be closer to the white one," "Daniel, can you water those other flowers in?"

Summary of My First ER Experience

By late morning on Saturday (6/29/02), it was clear that there was something wrong with my port. One of the ports (I have a double) was very red, and warm to touch. Moving my left arm (the one on the port side) hurt. Since these are the things that you're warned to look out for, I called the emergency number of my oncologist, and after speaking with the after-hours folks, I was told that I would get a call back. When one didn't come in a few hours, I decided that it couldn't be that serious. But, by the late afternoon, it was clear that it was getting worse. So, I called the after-hour folks back, and this time the doctor responded to the page. He said to go to the local emergency room, and have them page him.

We walked to the hospital that is 1.5 blocks away. We were there (the local emergency room) for over 2 hours, and didn't get anywhere except seeing one nurse, and two doctors who didn't seem to be happy that someone was in their emergency room. (There was one other guy who showed up at the emergency room near the end of our two hours, so it didn't seem like these guys were over-worked.) Finally, they decided that they didn't know what else to do after taking blood work, so they took my request to heart of paging the oncologist. And, they didn't want to wait until the doctor returned the page. So, we left with the results of the CBC (blood work), and paged the doctor from home. Based on the my description and my WBC, he thought I had cellulites, which is an "infection due to the accidental dislodgement of the needle from the port that leads to extravasation of chemicals into the subcutaneous tissue." [Isn't the web wonderful!] I have a prescription for an antibiotic (levofloxacin), and will follow-up with my oncologist on Monday.

While we were in the ER, my anti-emetics wore off.

What will I do differently next time? I will attempt to get the oncologist-on-call to tell me what he wants the doctors in the ER to do.

6/30/02: The port still hurts the same amount, but I am having an easier time moving my left arm. I feel unstable walking. I am looking forward to the upcoming work week. I self-injected Neulasta, which is a one-dose injection that should replace the 10-doses of Neupogen. I happily skipped the anti-emetic drugs today! The tumor isn't hot-to-touch like it was a few weeks ago; I don't know if this is a good sign, but it's neat. First bike ride in a week or so; 45 minutes. It was indoors, since I'm still pretty wobbly.

7/1/02: The port seems better today. My oncologist wants me to call her with a status on the port on Wednesday. Biking was difficult; I only did 30 minutes.

7/2/02: My port seems fine again, and I feel like I'm back to my normal perky anemic limpy self.

7/3/02: God, it is hot! I'm doing well. I'm slowly learning about my surgical options. Biking involved lots of head pounding; I did 55 minutes.

Notes in Preparation for Surgery

We met with surgeons from both Columbia and MSK. I picked the one from MSK.

Columbia surgery: We met with Dr. Francis Lee, an orthopedic surgeon at Columbia. on June 26 and July 9, 2002. We asked a set of questions that I had prepared with the help of my parents and Bruce. Dr. Lee described the surgery, using my pre-chemo MRI images to help explain. In removing the tumor, he would take up to 3cm of healthy nerve on both ends of the tumor (this means that a total of 13cm of the tibial nerve would be removed). He would remove a bit of 1 or 2 hamstring muscles. He would be able to leave the peroneal nerve, even though it is adjacent to the tumor. Because of the location of the tumor with respect to the blood vessels, the envelope of the vessels would be taken out with the tumor. This wouldn't leave a large enough margin, so I would need radiation (6 weeks ?) to sterilize the area. The new incision would encircle the entire biopsy incision (the biopsy incision and a margin would be removed to make sure that there are no cancer cells left in the local area); this would involve 2 inches x 7 inches of skin. If Dr. Lee performs my surgery, he will have 2 residents assisting him. The surgery would last approximately 4 hours. I will have a drain for 3-5 days. I would probably have to stay in the hospital for 7-10 days.

Recovery: I will have some leg swelling (which might last up to a year), but should be walking in 3-4 days. (The swelling can be helped by elevating the foot and doing foot pumping exercises.) I would probably be on crutches for 2-4 weeks, and using a cane for a few weeks after. Radiation would start 10 days to 2 weeks after surgery. Chemo could resume 2-3 weeks after surgery.

Dr. Lee discussed how it might be possible to save the tibial nerve if it is flattened on the tumor, and not involved in the tumor. (It is my understanding from the neurosurgeon who did the biopsy that the tumor is in the tibial nerve.) Dr. Lee is not supportive of a nerve graft being done at the time of the resection. When it is done, it would be done with a piece of the sural nerve (which is located in the calf). The radiation might affect the ability of the nerve graft to take. He stated that I should be able to walk fine with an ankle brace; he called the brace an AFO. He suggested that I meet with Dr. Peter Schiff (a radiation oncologist) before the resection. He wanted a PET scan performed; it might be able to tell if the tumor is mostly dead before the surgery. (Dr. Keohan disagrees; she has seen obviously growing tumors come back PET negative.)

MSK surgery: We met with Dr. Brennan on July 12. The description that he gave of the surgery was the same as Dr. Lee with a few exceptions, e.g., I would probably have to stay in the hospital for 5-7 days. Due to his experience removing soft-tissue sarcomas, we choose him to perform the surgery.

Additional information: I spoke with Dr. Keohan, my oncologist, on July 3. I learned the following:

  • Picking between the two surgeons I am considering will NOT effect my survivability since they will both do a fine job at removing the tumor. I should be making my decision based on their plans on how it will affect my mobility.
  • I should press both of them on the issue of worst-case mobility (what muscles will be removed, etc.). In her conversation with one of the surgeons, it seems that he is not convinced that it is a nerve tumor, versus a soft tissue tumor pushing up against the nerve.
  • From the surgeon-point-of-view, it is not important that the tumor is a Ewing's sarcoma, but that it is a soft tissue tumor. If it is a nerve tumor, this is important.
  • She feels that the nerve graft most probably won't survive the radiation therapy if is it external beam; she didn't have an opinion on the bracytherapy. (So, if I need external beam therapy, I should probably wait until the end of rad/chemo to get a nerve graft.)
  • One of the points that the surgeons might differ in is what type of radiation will follow. Dr. Lee's plans are to use external beam radiation. Dr. Brennen MIGHT use bracytherapy. Each of these have their own advantages/disadvantages, but there haven't been randomized studies that I will be able reference for guidance.

I spoke with Dr. McKhann, the neurosurgeon who did my biopsy, on July 3. I learned:

  • At the time of the biopsy, the tibial nerve was encased in the tumor (at one end, the tibial nerve entered, and exited out the other end). The peroneal nerve was within 1cm of the tumor, but was not affected.
  • My tibial and peroneal nerves are split before the tumor.
  • He will want to make some calls once he talks to Dr. Lee about the surgery before giving an opinion on when the nerve graft should occur.
  • Since I do have some use of the tibial nerve, removing the tumor without a graft will cause loss of functionality/sense that I currently have.

7/4/02: Had my pre-surgery MRI of the leg today; I should be getting the results on Monday. The head pounding takes some of the fun out of things. Tom, Daniel and I were hoping for a cooler 4th-of-July so that we could work in the garden. Instead, we hung around the house and went to Home Depot.

7/5/02: Tom and I went biking; my first outside ride since the wobbliness due to the in-patient chemo experience: 11.5 miles in an hour. I'm in the office today.

7/7/02: We spent Saturday (7/6/02) at Tom's mother's home. We returned early. Jeff brought me along on a trip to Ikea. Tom and I went for a bike ride: an hour long, 12 miles. Walking seems okay. Climbing stairs still makes me feel anemic, but I feel good (wrt chemo side effects) otherwise.

7/8/02: Feeling the same as yesterday. Got the MRI results; the tumor has only grown a tiny bit from the MRI taken 2.5 months ago. Got a picture from the neurosurgeon that he took in the biopsy on 4/4/02. Tom and I went for a bike ride. Always riding with a buddy finally paid off: when I got my flat, Tom biked home and came and picked me up in the car. I only got 5 miles (26 minutes) before the flat. Sometime in the last few days, the wobbliness disappeared. [See Introspectives Along the Way page 3.]

7/9/02: We (Mom, Dad, Tom and I) met with Dr. Lee, a surgeon who might perform the surgery. My port is infected again; I'm back on antibiotics. I biked 45 minutes.

7/10/02: I had a PET scan this morning and an oncologist appointment. My HGB is the highest it as been since chemo started (Go Procrit!). Chemo will start 4-6 weeks after surgery; it depends on how well the incision heals. The baseline scans (CT and bone) will be repeated soon after surgery. I went to another Young Adults Cancer Support meeting. There were only two other women there; neither had been at the previous meeting. I enjoyed attending, even tho it was depressing in some ways; one woman was mourning the loss of her ability to bear children even as she found out that she has mets all over. I biked 45 minutes.

7/11/02: I feel wonderful wrt energy! Tom and I biked for an hour, and did 3 laps at the park.

7/12/02: We (Dad, Mom, Tom and I) met with Dr. Brennan at MSK, and decided that he would be the one to do the surgery. It is scheduled for July 23rd. I also got my pre-surgery tests (chest x-ray, blood work, EKG, etc.) out of the way. The nurses were concerned with my port infection. After sleeping on a futon frame that was low to the ground for the last 13 years, Tom and I finally bought a "normal" bed frame.

7/13/02: Tom and I are enjoying the fact that I'm not anemic. We did some house projects and biked around the park (4 laps; 15.7 miles; 80 minutes). My port injection is not clearing up, but neither is red area growing. I can't get comfortable sitting on the couch (due to pain in the foot, caused by pressure on the tumor), but I'm fine on a chair or in bed.

7/14/02: I had a number of visitors today: Lan, and Casaundra, and a brief visit from Wee Teck. Jeff, one of our house guests, left for a few weeks. Sniff. I biked for 70 minutes; I don't know how far since I misplaced my bike computer.

7/15/02: I was hoping to go to the office today, but the foot pain kept me awake all of last night. So, I'll be working from home today, with the hope of getting a nap in. Tom and I ended up having to take a trip into Columbia to have my oncologist look at the port. She thought it looked much worse then it did on Wednesday. She ordered a CBC and blood cultures. We'll get the blood culture results in 2 days, but she expects them to be negative. I have a new antibiotic (Z-PAK/Zithromax); if I don't respond by Thursday, we'll have to pull the port. I biked for 50 minutes.

7/16/02: I was up most of the night with burning pain in my foot and swelling in the ankle. It's been a number of months since this has happened; I don't know what caused it to come back. Soaking my foot in ice water helped, and I put lidocaine patches on, which help. Tom stayed home from work; he has port anxiety. It's too early for me to say whether the new antibiotic is helping. I tried to bike away the foot pain, but gave up after 30 minutes of cycling.

7/17/02: I slept last night, but that was due to the morphine and not the foot pain being gone. Most of the port pain is gone, but the redness is still here. Between pain in the ankle (probably from the swelling) and the hyper-sensitivity that seems to have come back on the bottom of the foot, I'm back on crutches. Hopefully, it won't last too long.

7/18/02: Based on my description, the doctor decided that the port doesn't have to be pulled at this point! The blood culture came back negative. She wants me on the antibiotic for another 5 days. I had to get another blood test taken. The pain in the foot is a little better today. Susanne and Daniela came for breakfast and Juan Carlos came for dinner.

7/19/02: The pain in the foot was better in the morning, but started up again in the afternoon. I'm not using crutches today, but I'm not happy when I have to walk either. Got the results of the blood test; everything is on for surgery in 4 days. Even tho it was a pretty bad week, I got quite a bit of work done.

7/20/02: Rich came out to visit. Tom, Rich, and I went to Ikea to return the under-the-bed storage boxes that we bought, but that didn't fit under my new bed. We bought boxes that did fit. After putting them together, and napping, we went to my folks for dinner. And, we got to see Matt and Karen's new house.

7/21/02: I'm not sure why, but I'm having a lot more pain now then I have had during the entire time since the first chemo. I'm glad that my surgery date is soon. Wee Teck hosted a BBQ; we had a nice time, eating and visiting with Bell Labs friends. I biked for an hour.

7/22/02: One advantage to the recent leg/foot pain that I have been having is that I'm more eager than apprehensive for tomorrow's surgery. The doctors aren't sure whether my pain will go away, but at the very least, the pain caused by the tumor at its site has to get better. I biked for 45 minutes.

7/23/02: I went into surgery at 12:10, and was in the recovery room by 2:30. Dr. Brennan removed the entire tumor, together with the portion of the tibial nerve involved with the tumor. He was able to spare the peroneal nerve and major blood vessels, but did take bits of muscles that were close to the tumor. I can still wiggle my toes! The pathology report is due in 5 or 6 days, after which we find out if radiation is needed. Dr. Brennan's impression is that the tumor did respond to the past 3 months of chemo.

7/24/02: I wasn't allowed to get out of bed yesterday, but can today. Plus, I'm allowed solid food. I'm finding the incision more painful than the biopsy incision, but that might be due to the incision going over the knee crease. I'm walking with the crutches, but putting weight on the left leg. I'm doing so well that they will probably let me go home tomorrow morning!

7/25/02: I'm home!

Details on My Surgery and Hospital Stay

I went into surgery to have my tumor removed on July 23; Dr. Brennan and two of his residents did the surgery. The surgery went as expected, a bit shorter than we thought it would be (less than 2 and 1/2 hours). I was in the hospital for less than 2 days, which also was a bit less than expected (we were told 5-7 days). I'm not sure why they let me go home early; when the doctor mentioned that perhaps they could send me home soon, he was addressing the residents with him, and said this before he looked at my incision.

My roommate was pleasant enough; an older woman who lost 20 lbs in the last month, and was surprised that it was cancer in her abdomen. Her grown-up children were bossy, loud, and not very nice to the nurses, but they didn't stay for too long.

My experience was pretty uneventful. I came out of the anesthesia when they were taking my blankets off so that they could put a heated blanket on me. Then, they wheeled me into place in the recovery room. I asked to see my foot a few times. The nurse would move the covers at the base of my bed; since I didn't have my glasses, I couldn't see the foot, but it was reassuring that she was moving the covers. 20 minutes later my family came in. They hadn't seen the doctor, but he came while they were visiting with me. He said that the surgery went as expected, and that I was right that the tibial nerve was surrounded by the tumor, and that the nerve had to be removed with the tumor. I asked how much nerve, and he said that I have to learn the difference between imporant and unimportant questions. One of the residents later told me that they removed 2-3 cm on each side of the tumor, so they probably removed 15cm of nerve in total.

I was soon bought to my room. The folks and Tom helped me settle in. The folks left soon, and Tom stayed. They were supposed to get a chair or cot for him to sleep on, but didn't. So, he slept on 6 pillows on the floor. Tom ended up going home at 5:30am to sleep and take a shower.

The incision was covered by an ace bandage, and I had two drains coming out from under the bandage. The ace bandage went from mid knee to 2/3 up the thigh. One could see an inch or two of sutures on the back of the thigh. Most of my left leg and part of the right was slightly blue; they had tinted the alcohol that they used to clean my leg with since I'm allergic to iodine (which is a component of the standard skin cleaner). This isn't standard; each of my nurses thought that I was very badly bruised.

We didn't know that I was going to be on a clear liquid diet (dinner was an Italian ice, Jello, and beef broth), or that I wasn't supposed to leave the bed for the first 12 hours. (Using a bed pan is much harder than it looks.)

On the next day, I slept in a bit. After the first set of rounds at 6am, my nurse helped me to the bathroom for my first trip there. Before I got up, I asked her if I would be showing everything to everyone, walking to the bathroom in my gown. She said no, but that even if I was, everyone has seen it all. When I got up, she said that I was only wearing half a gown, not only could you see my back side, but my sides as well. So, after cleaning myself up, I changed into shorts and a tank top. I had a few visitors (Juan Carlos, Bruce, and Alan). Tommy came back around 2:30, and stayed with me until 9pm. I played a few games of bingo in the rec room. Matt and Karen visited in the evening.

On the second day after surgery, the residents decided that I could go home. They took out the drain at 12:30, and we left the hospital by 2:30.

So, the big question is "how is the pain?" Well, I don't feel the tumor; it in itself was causing a lot of discomfort. And, I haven't had the burning pain. The first day, I had a lot of incisional pain. (Just in case you're wondering, this incision is 8 inches long. The second day, I had a lot of muscle pain (a number of the hamstring muscles were cut and pieces taken since the tumor was close to them); when I use these muscles, they complain.

Plus, I have to re-learn how to move my leg. I could be lying down on the bed, and think, "I want to bend my knees." The good leg does what I want, and the bad leg just sits there.

I'm not having problems walking; in fact, my walk probably is better now than before the surgery (since I was in pain before the surgery). I don't think the fact that I have a floppy ankle is noticeable yet. I'm using crutches some, but am also walking without them.

The surgeon said that he spoke with a neurosurgeon who told him that a nerve graft wouldn't be possible (even after all of the cancer treatment) because the tibial nerve is quite a large nerve, and the standard grafting nerve, the sural, is too small. When the time comes (once treatment is over), I will discuss this directly with neurosurgeons.

The experience at MSK was pretty different then Columbia. The rooms are larger, and both beds have some window exposure. Meals are not delivered at a set time, but are ordered like room service in a hotel. (The food was good, too.) There was a very large rec room, where Tom and I made trivets for our mothers from tiles. There was a nice library on our floor also.

7/26/02: Home is a nice place. I'm having some muscle pain when walking or moving my leg, but this is small potatoes when compared to the pain of last week (before the surgery). (No crutches!) The incision has some bruising, but nothing compared to the biopsy. The drain holes are still leaking some.

7/27/02: Less pain than yesterday, but I'm finding more things that cause an explosion of pain in the bottom of my foot. Tom and Daniel worked on the fence in the backyard; I wrote some thank-you notes. (Surprising to think that a 20x20 foot garden can keep us so busy.) Did I mention that the surgeon said I probably will be able to bike again in a week or two?

7/28/02: Kind of a slow day. Tom went biking (without me). I worked out on my upper body. Tom had me do some foot exercises.

7/29/02: I am in the office today. It seems that chemo has been long enough ago; I'm starting to grow peach fuzz on my head.

7/30/02: One of my sutures is missing! Maybe I have been more active than I really should be so soon after the surgery. But, at least I haven't been on my bike yet.

7/31/02: I am in the office today. Cliff took a picture of the incision, if you're interested.

8/1/02: I'm still having pain in the bottom of the foot. It started the day after the surgery, mostly triggered by me reaching for my toes or something like that. Now, it seems that I'm having the pain most of the time. It is rather mild unless I do something to trigger it. We got the path report today. I finally convinced Tom to cut the Dr. Seuss hairs; they were just too thin. But, now that I have hair growing, they aren't needed.

8/2/02: I can put on my shoes by myself! (Previously, it would hurt too much to bend down... those sharp pains on the bottom of the foot.) The surgeon removed every other suture; the rest will come out in 4-5 days. We discussed the path report; the margins are negative. This means that they think that they got the full tumor. (This is good news!) The tumor is 20-30% dead... not the best numbers in the world. (This is bad news.) I'll need 5-6 weeks of radiation. See Dad's notes on the doctor's appointment below. I biked for 15 minutes on my trainer. (I didn't ask the surgeon if it was time to start biking again; if I don't ask, he can't say no.)

Here's what we learned after visiting with Dr. Brennan on Friday with Liddy and Tom and having the surgical report and the pathology reports reviewed with us.

1) The tumor was removed without compromising it in any way, i.e., it was removed intact and was not cut or opened. As noted in our message just after the surgery, he was able to spare the peroneal nerve and the major blood vessels to the leg.

2) The tumor and tissue surrounding it had "negative surgical margins." A negative surgical margin means that the tissue surrounding the tumor is found to be free of microscopic cancer cells by the pathologist. Thus, a negative surgical margin is a very, very welcomed result. A positive surgical margin indicates that during the surgery the surgeon cut through microscopic cancer cells and some were left behind in the patient. Hence, Elizabeth's result is excellent-the tumor is out and it does not appear than any cancer was left behind from the operation.

3) About 20-30% of the tumor reacted to the 3-month chemotherapy regime that she had. The doctors would have like it better if 80-90% had reacted. But, it could have turned out that only 5-10% had. Thus we know that the current chemotherapy protocol is working, but not as well as we or the doctors would like it to.

Elizabeth will now be given:

(a) localized radiation therapy (in the area the tumor had been) to attempt to kill any cancer cells that might be in this area (e.g., some that may have escaped during the original biopsy procedure); and

(b) chemotherapy to deal systemically with the cancer cells, i.e., attempt to kill any cancer cells that may be elsewhere in her body.

She'll start the radiation therapy (it'll last about 5-6 weeks) as soon as her wound (the surgical incision, see her web-site) is healed. We're unsure of when the chemotherapy will begin or how long it will last or what the drugs will be. However, at this point, we believe the chemotherapy will last for 5-6 months. Both the radiation therapy and the chemotherapy will take place at New York Columbia Presbyterian Hospital.

8/3/02: Tom and I went to Ikea and bought 3 book cases and 2 CD towers. The walking at the store was too much for me. I biked for 30 minutes, which gave some pain relief from the walking.

8/4/02: Tom and I volunteered at the NYC Cycling Championship, passing out literature on the NYC Century Bike Tour. I was sitting most of the time, and was pretty pain-free. I got sun burnt on my face and shoulders (but not the head). After our volunteer hours were over, we went to watch a bit of the men's pro race. We were 7 feet from Lance Armstrong!! Tom was disappointed that we only saw his face, and not his legs. We ended up coming home to watch the race on tv.

8/5/02: I went into the office today. My ankle is hurting again. The bottom-of-the-foot pains are still there, but I'm starting to think about them as ``sensations,'' and not as pain. I biked 45 minutes.

8/6/02: I was hoping to go into the office again, but the ankle is quite swollen, and the weather is not that hot. :) I biked outside for 70 minutes; it was quite windy. The left leg wasn't useful at all. I don't know why I expected it to be any different, but I did.

8/7/02: I had an oncologist appointment today. Because of my tumor's lack of response to the chemo, it is not clear which of the following should be done: 1) finish the standard protocol, 2) give me a couple of cycles of the standard soft tissue sarcoma protocol, or 3) give me other drugs. My oncologist has sent email queries to colleagues for suggestions since the published studies do not give direction. My incision was also quite swollen, probably due to the recent biking (bad Liddy) and extra knee bending. The rest of the sutures were removed, but she had to fight with some of them. Luckily, the ones that she fought the most with are in a part of the leg that is numb. Since I have a break in my treatment, Tom and I are going to the bay area (CA) this weekend to see friends.

8/8/02: I was in the office for a half day. Too much to do...

July 2002

8/9/02-8/12/02: Tom and I are in CA, visiting friends (Chia-ling, Jin Joo, Matthias, and Sridhar). As long as I don't try to do too much walking, I'm fine. We did some shopping, visited with friends, and helped organize Chia-ling's bedroom with new Ikea furniture. We had a picnic in a park. We went to Rodney Yee's yoga studio with Natalie.

8/15/02: I am posting less often because there is little change in my leg/foot. I just spoke with my oncologist; after consulting with a number of other oncologists (including Dr. Maki from MSK and Dr. Baker), she decided to continue with the original protocol. During the radiation therapy, I won't be receiving the doxorubicin (Adriamycin) because it would be too toxic. So, I will probably have chemo in 10 days or so since that is when RT will begin. I biked for 45 minutes.

8/19/02: Tom and I went for a bike ride outside last evening (11 miles, an hour, 3 laps). My hair is long enough that I got helmet head. I'm finding biking outside somewhat depressing; it is hard. Maybe once the weather improves, I'll enjoy it again. Or, once I get an ankle brace. I'm still having ankle and heel pain when walking; I'm upset that I'm still having pain. I thought that the pain would go away once the tumor wasn't there.

8/21/02: We (Mom, Tom and I) met with the radiation oncologist. I need 5-6 weeks of radiation to "clean up after the surgeon." I will go back in two days for my simulation, where they put me on the machine, and line me up. I'll get tattoo dots so that I can be correctly lined up for the treatments. The side effects of the treatment are skin irritation and fatigue. The doctor didn't know how much would have to be irradiated; he has to speak with my oncologist and surgeon. I also don't know when it will start; hopefully on Monday, but probably not. It was a little frustrating that he didn't have the necessary information to be able to tell us more. Tom spent some time with his muscle books, trying to figure out why I have the pain in the ankle that is limiting my walking. I also spoke with my pain doctor; he suggests that I go back on the meds that I was on before the surgery. Those meds are the main approach to the pain if it were ghost or nerve pain. He said that we might be headed back to the RSD diagnosis. :( I biked 45 minutes with a plastic splint, trying to get some use from the left leg. It helped a little bit, but not enough to offset the raw spot on the heel that the splint caused.

8/23/02: I had my RT simulation today. (RT simulation description) We couldn't schedule the first appointment of RT since my oncologist is on vacation. Doesn't she know that I need to start my treatment so I can finish it and get on with the rest of my life?!? I biked 45 minutes.

Radiation therapy simulation

Radiation therapy simulation The purpose of the simulation is to determine my position on the table and the table's position to receive the radiation. Once you are in the position that they think they want, they verify that it is a good position, and then take pictures, both photos and x-rays, and tattoo dots on your skin close to the area to be irradiated so that the position can be reproduced.

I got on the table and took my shoes off. I laid on my belly. There were two doctors (my doctor, and the chief resident) in the room, along with a technician. They put a number of different pillows and cushions under my left leg, trying to get it higher than the right so that they wouldn't irradiate the right while treating the left. After a number of attempts, my doctor brought in someone from the physics department who disagreed with the positioning. So, they started over. Finally, they were happy. So, the physics guy got someone else from the physics department, and she pointed out why that position won't work. So, they started again. I didn't understand most of their conversation with one another, but the word "triangulation" was repeated frequently. (At this point, I had to use the toilet; the nurse didn't remind me to void my bladder as they normally would for a test where you're on your belly, or that will take a long time.)

Once everyone was happy, a mold is made for the leg. This is done by removing the air from a large pillow-sized bag of small Styrofoam balls; once there is a vacuum, the balls stay in place. Once I'm in place, the machine needs to be positioned. To verify that this is done correctly, some tests of some sort were performed. (Everyone would leave the room, and the machine would hum.) Once they got a possible position, part of the machine moved over me to check for clearance. Then, measurements were taken. The physicists (there are 3 of them now) made 3 wire molds of my leg. The final step was for me to be tattooed. Some of the marks on my leg (they have been drawing on me the entire time) were removed, and others were made permanent. I have 5 tattoo "dots" which will be used to line me up so that I am in the same position each time.

Since I was assured that it wouldn't take more than an hour, and I was on the table for over two, I asked if my case was special. The technician told me that they do radiation in all parts of the body, but that the majority were prostate, breast, head, and neck, so positioning me with one leg up was a challenge.

For someone who is fascinated with their body like I am (e.g., I like to poke bruises), having the tumor on the back of my thigh has been inconvenient: I can't see it. Using a mirror to see the incision doesn't enable me to see it up close. Today, I found another disadvantage to it -- I couldn't see what the doctors were doing.

I found out that I will be able to wear shorts during the treatment instead of having to change into a gown.

8/24/02: Tom, Daniel, and I spent 2 hours clearing the garden of one of our rentals. Once my foot started to bother me, I was able to sit and still help with the clearing.

8/26/02: I'm in the office today; 3rd day in a row!! I just spoke with my oncologist; I will be admitted into the hospital for 5 days of in-patient chemo on Wed. (8/28/02); she will increase my dosage of ifosfamide. This decision was made after she spoke with Dr. Meyers, a pediatric oncologist at MSK. The next cycle will probably also be an in-patient chemo at week 4 of the radiation. We also spoke about how many more cycles I will have: 4-8. It will be fewer (i.e., 4) if I have problems with the toxicity, and more if I don't. I will start my radiation on Wed. also. While I'm in the hospital, I will probably have a CT scan of the chest, and meet with an orthopedist for a brace for my ankle. I wasn't emotionally ready for the in-patient chemo; it makes me feel dopey/stupid/forgetful. I probably should read my notes to see what the other side effects were, but, then again, I probably shouldn't.
I biked for 45 minutes. And, I did some leg curls and leg extensions... first time since last October, when I first starting having problems with the calf muscles.

8/28/02: Week 29: A room on the cancer floor didn't open up for my in-patient chemo. By 2pm, I called the receptionist of my oncologist, and she got me a room on the "special floor"... a private room with carpet, a view of the GW bridge, extra special meals, etc. There is even high tea from 3-4pm, with cake, cookies, and a guy playing the piano. But, I will probably have to stay another day since my chemo won't be started until 9 or 10pm. The nurse didn't have problems accessing my ports; I was worried since they haven't been used for 4 and 6 weeks (I have two ports). Between midnight and 2am, I had a CT scan of my chest, abdomen and pelvis.

8/29/02: I got to my room too late yesterday for radiation therapy. So, today was my first treatment. It took 15 minutes to get me in position, a couple of minutes of the x-ray, 10 minutes to find the doctor to look at them, and 30 seconds to receive the treatment. I didn't feel anything. The radiation oncologist told me, when I asked, that he was irradiating 8x24x6cm of tissue, blocking so that the knee joint isn't hit. I had a x-ray of the foot taken; trying to find a cause for some of my pain. I spoke briefly with my doctor. She got the CT scan results, and wants to speak with another specialist about the chest. My pain management guy came by to discuss the hypersensitivity I'm having. He'll come again tomorrow to talk again. Juan Carlos stopped by for a visit.

8/30/02: The chest CT showed that I have 5 micromets in my lungs. (Dad is always better at giving out this type of news.) The micromets are very small [3-4 mm], too small to biopsy. I'll get another CT scan after the current chemo, and we'll see how they've changed. Once they get big enough to biopsy, we will. If the number stays small (less then 10), they can be surgically removed. I got approval to bike; there's a recumbent down the hall. I rode for a bit before going down for my RT treatment. By the time I got back from that, Mom was waiting for me. We visited, mostly rereading the CT report. Tom and Dad came, and each had their many reads of the CT report.

8/31/02: Daniel and Tom came by after they played pool in the city. Then Matt, Karen, and Lukas visited. Bruce, Sarah and Isabel also stopped by. No biking; no energy.

9/1/02: I got RT even tho it is on the weekend. I don't notice anything yet, but Mom thinks the incision might be turning purple. I biked on the recumbent bike for 30 minutes; my foot kept slipping off. Daniela gave us a whirlwind visit, and Mom and Dad dropped by for high tea. Even tho my oncologist wanted me to stay until Monday morning, the last day was uneventful enough for me to leave. Tom and I got home at 1am. This wasn't that bad of an in-patient chemo, helped greatly by the private room and private bathroom.

9/2/02: It's nice to be home. Tom and I have a vacant apartment that I will be showing to be a few people today. It's amazing how fast the in-patient week went.

9/3/02: I had forgotten how nasty my tummy feels for the first few days after chemo. I didn't want to eat (or even think about food) when I first woke up. But, after my RT, which took 2 hours from Tom and I leaving the house, to returning, I ate two fried eggs with lots of salsa and Tony's. I'm starting to come up with my plan for this week... RT, breakfast, work, nap, work. The micromets are kind of scary (I'm much more scared then I have been with the past news).

9/4/02: I took today off from work. Mom picked me up at 8 to bring me for my RT appointment. The mornings are tough; I felt very moody and my tummy hurt. And, since Mom was coming, I wanted to straighten the house. (This is one of those things that Tom find annoying about me... when my mom or his mom visits, I want the house straightened even if they will be there for 5 minutes. And, when I was finding myself in a room, wondering what I was doing there [I still feel dopey!], I started to become annoyed with myself.) The RT appointment went well; it was a bit delayed, but the technician apologized, so I'm hoping that I won't normally have to wait that long. Mom was able to see how they position me, and also see my radiation being administered. (I didn't know that they had a camera in the room.) After the appointment, we did some shopping and made a return to Home Depot. Little things like returning to Home Depot have been bothering me. The cancer, because it is taking so much time and energy to fight, isn't making it easy for Tom and me to live our day-to-day lives like we did in the past. Mom, Dad, and I spoke with my oncologist this afternoon on the phone. The plan with the possible micromets in the lungs is to see if they respond to 2 cycles of high-dosage Ifex (1 cycle down, one more to go); if they don't, we'll try another type of chemotherapy. Radiation isn't an option since they aren't co-located enough; surgery isn't attempted until there are no new additional nodules for 4 months or so. We did learn that they have to be about 1cm for a biopsy.

9/5/02: Wee Teck and Daniela came to visit and stayed for dinner. I biked 45 minutes.

September 2002

9/6/02-9/8/02: Friday started with my RT, an appointment with the radiation oncologist, and blood work. (My platelets and WBC are low.) Tom and I asked the radiation oncologist if we should change anything now that I have distant disease, and he said that he thinks the RT is more important than the chemo. We didn't understand his reason; without the chemo, I will die, without the RT, I might have a local reoccurrence. Tom and I drove to Waltham (Boston area) to see Rich, and to go to Len's wedding in Salem. We danced two dances at the reception. We visited Liz and Neal, and their two kids. Generally, I felt good as long as I didn't do too much walking, or was able to elevate my foot.

September 2002

9/9/02: I'm at the office today. Tom and I went to RT and the brace shop. At the brace shop, the orthotists were able to give me an off-the-shelf lace-up ankle support to help when walking. And, they made a cast for a custom brace to help when biking. The custom brace will hold my ankle locked at 90 degrees. This is one of the best medical appointments that I have gone to since April; it was very nice to hear things like "We can help with that pain." and "We can improve that." Plus, they had a reasonable theory on why I have the ankle grinding pain and the swelling; assuming their theory is correct, that pain should gradually disappear as I use the support. I biked for 50 minutes with the support; it didn't help at all, but, then, it wasn't supposed to.

Miles and Isabel

9/11/02: I either look very healthy, or the hospital security is being more vigilant; they asked for my id, which they haven't done since April. RT is still coming along well. I had an office appointment with my oncologist today; based on my CT chest scans, she says that she is on orange alert. I found out that if the high-dose Ifex is successful (no growth or smaller masses in the next CT), I will have 4-6 cycles of it. And, once that is over, I might have the rest of the original protocol (2-4 cycles more of VAC). We also found out that there's no need to test my bone marrow since one of the symptoms of having mets in the bone marrow is having a slower recovery (and my bone marrow has been recovering "amazingly well"). But, she thinks I still have another 6-12 months of treatment. My blood counts are good enough to schedule the next round of chemo; I wanted to start tomorrow, but my oncologist prefers not to have me in the hospital over the weekend. So, I go into the hospital for 5 days on Monday. We (Mom, Dad, and I) went to visit Sarah, and her new baby Miles who was born on Sept 10.

9/12/02: My incision is stinging a bit when I sit. The radiation nurses gave me a cream to help (Biafine). I biked 45 minutes.

9/13/02: Juan Carlos brought me for RT; both the nurses and radiation oncologist thought that my incision was looking good. The nurse commented that my need for more sleep was to be expected. Now that I have had the ankle support for a few days, I can say that it is really helping quite a bit with my pain!

9/15/02: Tom's birthday!! A trip out to Long Island to visit Tom's mother (Saturday), and a dinner with a number of friends over to celebrate. Plus, we got to visit Sarah and Miles (and Bruce and Isabel). Jeff and Leanne were up for a visit. We had a nice weekend. I biked 45 minutes.

Forth In-Patient Chemo Experience

One of my frustrations with the in-patient chemo is that after a few days in the hospital, I start to forget everything that has happened. I'm not saying that a lot happens, but I forget who my visitors are, and I forget whether I have biked, etc. Not important, but the end effect is that I feel I lost a week in my life. This log might be more detailed in an effect to regain that week.

9/16/02: We got the call to come in at 1:30 (they said that they left a message on Sunday, but we didn't get it). Jeff brought me in and stayed with we until they brought me down for radiation therapy at 4:50. I have been playing with the idea of writing a book about my cancer experience, so talked about what a novel would need to be interesting; we aren't sure if I have something to say that would be interesting. There aren't enough people with rare cancers for it to be about a rare cancer. There aren't enough young adults with cancer for it to be about that either. And, there's always a book about cycling and cancer :) So, I think the current idea is a mostly non-fiction novel-type of book.

They started my hydration at 7, and chemo a bit after 10pm. Tom visited in the evening for an hour. Valerie, a friend I haven't seen in many years, visited until 11. She bought me dinner because the hospital forgot to feed me.

9/17/02: I woke up before 6, but didn't have much of a reason to move around until the nurse came at 6 to take my vitals. The chemo nurse came by to check the urine output, and was disappointed that I didn't go during the night. So, I went on demand. :) The nurse dropped off my blood work; I always ask for it 'cause I want to know what is going on. I was very surprised that I had almost all zeros for the eltrolights, so I asked the nurse. She looked at the values and said "There's obviously something wrong; with these values, you would be dead." Of course, this became a trigger for a patient-doctor talk. So, when my oncologist came in to talk to me, I asked her about the counts; she responded the same way "With values like these, you would be dead." We also spoke (me initiating) about whether it will hurt to die from lung mets; she said no. At some point, I would go on oxygen.

I don't feel as perky as yesterday, but I'm doing well. My typing has decreased in accuracy. Mom visited for a number of hours. I napped during part of the visit. Before she left, I started my bike ride. She wanted to leave before the parking fee increased, so I was still on the bike when she left. Mom's Notes from the Visit: I spent 4 hours with you and we talked about your plans for your rentals, esp. first floor apt. and putting new flooring down. We looked through magazines and took an organizational-type test that was in one of the magazines I brought. We talked about my inability to get organized. {you promised to come and help me :)] Do you remember?? You didn't really, but it would be nice. We complained to the nurses that you weren't getting your meals. The dietician came in and asked you some questions and said that they hadn't had a diet order for you. You finally received a "left over" lunch that evidently had been sitting around for sometime as the milk and ginger ale was hot. You didn't eat it. It was tuna or chicken salad and didn't seem safe to eat since it had been sitting around. The nurse said that a proper lunch would be coming and you could decide which one you wanted to eat. At 2:30 there was still nothing, you ate a banana that I had brought and a sweet roll saved from your breakfast tray and milk you had saved in the refrigerator from the night before and I ate a packaged roll and ginger ale from the lunch tray. You napped a bit and I read a magazine. We moved the exercise bike to the alcove and you biked for 45min. while I was there and were still biking when I left. That's about it. Love, Mom

A social worker dropped by and told me about the young adults meeting on Friday. An artist stopped by and we did an art project together. I made a box for my bedroom: blue and yellow. Wee Teck and Jan and Susanne stopped by, each with food. We ate in the phone lounge; Wee Teck brought some food, and Susanne brought pizza from Hoboken. I had some of both. I don't know what time they left, but Tom was tucking me into bed. Wee Teck's notes of the visit: I don't recall everything, but here're some of the highlights: 1. canceling your employee stock purchase plan 2. I'm visiting you this sat to get my tire back 3. various medical stuff (when are you getting your x-ray etc) 4. master tom saying he's fatigue at least 3 times 5. food-related musings and you trying to chew a big leaf of vege. Susanne's notes of the visit: We talked about a lot of Bell Labs stuff, form I, etc. And then we also talked with Wee Teck's friend about what she did that day, what her plans are for the upcoming days etc. And the final thing was us talking about donating blood. And there is my question: I am definitely B+. You mentioned first you are AB and then B+. If you are B+ and it would help you, I would go and donate blood one right away, to have the stuff tested and thus be ready for whenever you may need some.

9/18/02: I was moved to a new room sometime today; the phone number is one less than before. The room number is 325. My previous roommate had a blood infection, so I was happy to leave. Plus, she didn't seem like a nice person; very tied up in her own affairs. Everyone heard multiple times about how she cannot pay her rent.

Leanne came at 10, right as I was getting back from from RT. She stayed until 11:30. Dina got here at 1:30 and stayed until 5. We discussed the use of bed pans over commodes when you have no pubic hair. We discussed a number of other cancer lifestyle changes. The conversation probably wasn't the most interesting for Lisa, who stopped by to visit for a few hours. Lisa discussed again about redoing her kitchen. Tom and I plan to lay a new floor next week. Once Lisa left, we played cards. 

I vomited. No recent meal, and no trigger. It was kind of weird. Tom shaved my head; the hair was following out too quickly. I was hoping for something other than a bald head, but that's what I got.

9/19/02: I napped most of the morning; RT took 4 hours due to a flood on the floor. Tom came by after work. Dad, Mom and Grandma visited after seeing Miles. Mom's notes on our visit: Dad and I and Grandma Shriver visited you on Thursday evening. When we arrived Tom was there with you. We had been to Brooklyn to spend some time with Sarah and Miles and to pick up Isabel from her new school. We talked about baby Miles and Sarah and Isabel. I also told you the recipe for the salad that we took and had for lunch. (I had gotten the recipe from Linda Becnel). You were looking flushed when we arrived, I was afraid that you might be running a fever, but you said that you had been upset that you had spent 4 hours in radiology as they had had a flood over there. Your dinner was there but it didn't look or smell appetizing to you. We took a walk around 5th floor and you took us to a small alcove with several chemo chairs that you call the telephone alcove. There were large windows with a nice view. You said that is where you sometimes have your dinner and/or play skip-bo with Tom or other visitors. We probably were there for a couple of hours. Dad brought you a book to borrow on writing that he had used in his writing class at Gilda's. The title is "Writing the Natural Way" and it is by Gabriele Rico. We spoke about the techniques that she describes in her book. You also promised dad that you would help him organize the garage :). Love, Mom. Nick, Jenny and Brian visited around 7. 

9/20/02: I met with Dr. Schiff this am; he thinks that either the radiation therapy or my biking has been reducing the incision scar tissue. Dr. Keohan mentioned that she recently spoke with Dr. McKhann, the neurosurgeon, who mentioned that he might drop by. She made it sound like he would be dropping by that day; maybe, he did and I forgot.

Karen visited, and we talked about her recent interviewing. She is not sure if she should be a get a full time job, or a part-time one.

We left the hospital at 10:45 or so. I was quite wobbly on my feet; I'm surprised they let me walk out. On the way home, I had my first hallucination. I pretended that I was asleep 'cause I thought if I told Tom, he would turn around and bring me back to the hospital. I saw aliens driving in the cars beside us (which, in itself is weird since I'm night blind). Since I knew that we had an alien problem, I spent the 40 minute drive developing mental lists of important things to do when there are aliens in your neighborhood.

9/21/02: We had breakfast out this morning with Casaundra, Phil, and Jon. Wee Teck visited for some of the day. I'm moving slowly, and have the desire to vomit, but feel good otherwise.

9/22/02: The family visited (and brought food!) Mom and Dad and Bruce and Sarah and Isabel and Miles! I'm still feeling dopey and not sleeping well. Tom and I finally got a chance to plant some rhubarb plants sent from Aunt Donna. The plants were in great condition and will hopefully produce wonderful rhubarb next year. We had tried two other times to plant, but the mosquitoes drove us away. In 5 minutes, I had gotten 10 bites along my incision!

9/23/02: Positive proof that my ankle support is really working: we washed it last night, and it took all day to dry so I didn't wear it. My ankle pain came back, along with the swelling. I'm going to look to get another support. At RT, they had to move my future appointments due to treating children, who have to be treated in the morning. I spoke with my oncologist, and she suggested that I line up 2nd and 3rd opinions just in case the CT chest scans don't show the desired results. She suggested places like MSK, MD Anderson (Texas) and U. of Michigan. I have requested an appointment at MSK, but haven't decided on where else I will go (if needed). I biked 45 minutes.

9/24/02: I'm taking a few days off from work to get a better handle on all of the little things that have to been done. It seems that millions of little things have to be handled that go by the side each time I'm in the hospital for in-patient chemo. I spent the morning helping Daniela prepare for her move back to Italy. I biked 30 minutes today.

9/25/02: During RT, the machine stopped working. So, I was "on the table" for over 30 minutes. Mom and I visited Sarah and new baby Miles today after RT. We did a little shopping: too much walking for me.

9/26/02: I had the most wonderful RT experience this morning: I was in and out in 12 minutes! Susanne brought me; it gave us a chance to catch up with each other.

9/27/02: Every Friday, I meet with the radiation oncologist. This time, he said that I have been handling the radiation "amazingly well" for someone who is having this many treatments if I were just having radiation, and "even more amazingly well" for someone receiving chemo while on radiation. He also said that we can modify the treatments a bit to decrease the number of treatments if I will be traveling to get my 2nd and 3rd opinions. I also got blood labs done, and the results have my WBC recovered! (I have never recovered this quickly!)

9/28/02: Mom and Natalie are coming for part of the day. We cleaned in the vacant apartment for 2 hours. Matt and Karen and baby Lukas came to dinner.

10/1/02: Only 7 radiation treatments left after today. I need the cream more and more make the incision feel better, so I'm definitely ready to be done with this part of the treatment. Tom and I spent some time in the evening working in the vacant basement apartment of our house. I spackled while he worked on removing the vinyl tile floor adhesive. Working on the apartment is keeping our minds off other things.

10/2/02: Only 6 more RTs after today (it is really starting to hurt)! I had 4 different appointments at the hospital today: oncologist check-up, brace shop, RT, and my long-awaited chest CT scan. I got my brace just for biking; I'll be trying it out tomorrow. My oncologist told me that I'm some kind of bionic woman, referring to my "amazing ability" to handle the chemo and radiation treatment. I couldn't bully her into planning for starting chemo on Monday; she wants to see the scan results and "plan." A woman at the hospital complemented me on my short hair, which I thought was funny since, at best, I have 5 o'clock shadow on my head. I mean, when you look at me, you don't see hair. I went to a 20s and 30s support meeting at Mom's Gilda's club while Mom went to a meditation class.

10/3/02: Only 5 more RTs left! The biking brace allowed me to use the left leg some. But, since I haven't been using the leg for biking for quite a few months, it didn't have that much to contribute. No doubt that will improve. I couldn't unclip from the pedal due to the brace, so I'm not ready for outside riding yet. I biked 45 minutes. I stepped on a piece of plastic with my left foot, and felt pain! (The bottom of the foot seemed like it was completely numb, so this is an interesting new development.)

10/4/02: I got the results of the chest scan. There are more nodules (but that might be just due to the position that I was in when the test was given), but they are small. The previous ones are still there, and are minimally more conspicuous. No additional growth sighted. Since it is such an aggressive cancer, stable scans mean that the chemo is working. We see my medical oncologist on Monday to discuss the next step. I biked 43 minutes; I'm having pain in the thigh that I think is due to me using the muscles again.

10/5/02, 10/6/02: Tom and I installed a Pergo laminate floor in the apartment on the bottom floor of our house. Lisa and Rich helped. I felt fine, but got quite tired with standing up to get flooring planks, sitting on the floor to put them in place, standing up, etc.

10/7/02: I had an appointment with my oncologist today. Her readout of the scan report (and the scans themselves) is that my disease is "stable." I understood her to say that the results were neutral, but Mom, Dad, or Tom might have a different understanding of her opinions. The 3 new nodules are too small to measure. So, I'll have another cycle or two of high-dose Ifex, and we'll rescan. It's a good thing that the CT scan is a quick and not uncomfortable test! I will also be checking with Dr. Meyers at MSK to see if he suggests anything different. I have a rash on my leg due to the radiation; only 3 more treatments!! I went to the brace shop to request a different ankle support. They'll look into it. While I was there, one of the guys asked how the bike brace was. I responding that it helped me use the left leg, but that I can't get out of the pedal. This guy thought that if they see me bike, they might have some ideas on how to change the brace so that I can move my ankle/foot to get the foot out of the pedal. So, I'll bring my bike and trainer in one day soon. I didn't bike this evening since Tom and I worked more on the floor in the evening.

10/8/02: Dr. Meyers suggested a slightly different chemo than what my oncologist is planning (ifosfamide and etoposide versus high-dose ifosfamide); he will call her and discuss. I have decided to go on short-term disability from Lucent. (This is the term used for the first 6 months of medical disability.) In some ways it was an easy decision, yet in others, it was very hard. Work, when I could do it, helped me forget the seemingly endless trips to the doctor and the misc. side effects of the treatments. But, I seem to have lost some/most of my ability to concentrate, which is very much needed in my job as a researcher. (Problems in concentrating is one of the side effects of ifosfamide.) Wee Teck and Juan Carlos came for dinner; Wee Teck helped Tom put in a couple of planks on the floor and Juan Carlos helped me spackle.

10/9/02: I'm back in the hospital for 5 days. I only got 4 day of chemo due to reaching a toxicity limitation. :(

Fifth In-Patient Chemo Experience

10/9/02: I'm back on the McKeen Pavilion, with morning breads, and afternoon tea. More importantly, a single room configured so that I don't have to unplug my IV pole to go to the bathroom. Tom brought me in around 12; it took quite a while before things started to happen. Fluids started a 4, and chemo at 6:30. Hopefully, we can shift it earlier so that I still can leave Sunday evening. We spent a bit of the morning finishing up the Pergo floor; it looks nice, but will look wonderful with molding and freshly painted walls. Tom left after afternoon tea and two chemo nurses trapped me for treatment. I watched a little bedtime SciFi and crashed for the night.

10/10/02: Mom visited and we went to the physical therapy room. I biked for about 45 minutes while Mom used the treadmill. When we got back to my room, Dina was here. Mom, Dina and myself had an enjoyable cancer visit. After afternoon tea, Mom went home and Dina stayed for a couple of hours. Tom visited after work and we checked Home Depot's website for lighting fixtures for the basement apartment. Dina went home, Tom ate my dinner and waited for Juan Carlos to arrive so Tom could go home.

10/11/02: I got out of bed at around 10:00 a.m. for radiation. Everyone assured me that I would not be able to get a weekend radiation date, but the radiation oncologist was very sweet and gave me a 10:30 a.m. radiation slot. This will be my last radiation slot; it cannot be too soon!! All the nurses were commenting on how angry and nasty my leg was looking. After radiation I went to the fifth floor to try to find the young adult support group. After finding that I was an hour early, I came back to my room, biked for about 30 minutes, bathed and went to my meeting. The meeting consisted of two facilitators and myself; it was all about Liddy!! Upon returning to my room, I went to afternoon tea for some goodies for Karen and Tom, and took a nap. Karen came for a visit at 4pm with cheddar on a bagel in hand. We visited and spoke about Luke's inability to stay awake for class (i.e., play group and music together). Tom arrived at 4:45 ready to eat my lunch. I told Karen and Tom about some of my hallucinations. This time the top of two neighboring buildings are moving side to side, not very much more than an inch.

10/12/02: I got my last radiation treatment today. It was anticlimactic; the place was empty. In fact, the only guy there was the tech who gave me my treatment. It was a little eerie since there are normally quite a few people. I biked 40 minutes. Bruce and Isabel came to visit. Soon, Mom, Dad, and Hakoon followed. Tom came in the evening, after he did some work on the vacant apartment. He ate my dinner, and watched a Star Trek episode with me. My experiment with decreasing the side-effect meds has decreased my dopiness, but it has also decreased the effects of the meds. The bed feels like it is spinning.

10/13/02: I get to go home today! Yeap, the effects definitely decreased with the decreased meds! It's a trade-off, and I'm not sure where to make it. I was vomiting the last two days if I ate anything, but then I was able to talk to people and feel somewhat coherent. In the morning, I was passing much less urine than normal, and it really stung in passing. The nurse found blood in my urine, which is one of the signs of toxicity of ifosfamide. At this time, I didn't know if this would limit me receiving more ifosfamide forever, or just for today. I felt very alone; more so since I knew that my oncologist would be coming by soon and I had to be coherent. I couldn't call out (something wrong with the calling card), so I sent an email to Mom, Dad, and Tom that felt frantic, but which has a chance of not seeming frantic. Mom and Dad called, and Mom came down and spent time with me. Mom's notes on our visit: We spoke mostly yesterday about the significance of the blood that was found in your urine yesterday morning. Dad had printed out more detailed material about Ifosfamide and urinary bleeding. Not long after I arrived, Dr. K. came in and said that she would be discharging you and that you would not be receiving the last dose of Ifosfamide. She also gave you a prescription for Ditropan to control the bladder spasms that you were experiencing. She said that you do not have a urinary tract infection, but the symptoms are from the Ifosfamide and that even though you had been receiving Mesna it does not prevent the bleeding 100%. We also spoke about the increase in fatigue, and N & V that you experienced with this cycle. I felt that it was probably due to the fact you were receiving a high dose Ifosfamide, as well as 3 days of Etoposide & radiation therapy. You had also decided that you did not like being unable to remember things and had been refusing some of the meds. to help control the N & V as you felt they caused the memory & concentration problems. You received your last R/T on Saturday. The rest of the time we spent getting you packed up to go home.

When my oncologist came by, she explained that my bladder was spasming, and that causes the blood. She gave me a prescription to help with the spasms. She decided that I shouldn't have the last ifosfamide treatment. I biked 30 minutes today. Mom brought me home early.

10/14/02: As rough as it is not taking some of the anti-emetics, I do feel better about how much I can remember of in-patient chemo. And, I feel like I can think just a bit better than in the past at this point. Tom and I did some vacant-apartment errands today (went to Home Depot, bought a refrigerator, installed molding); it was a very draining day.

10/15/02: Help me out here, guys. Radiation is done, yet the incision continues to go downhill; it looks more and more "angry." And, it is not due to biking, since I haven't biked since Sunday. Tom stayed home today, thinking that he might be coming down with a cold; he feels a bit better now. I think I have cellulitis (a skin infection) around my port again; if it doesn't clear up by tomorrow, I'll call my oncologist. (Last time, it took 4 weeks of antibiotics.)

10/16/02, 10/17/02: Tom stayed home both of these days and we did projects on the vacant apartment. I would take 3-4 hours off when the stinging from the incision got to be too much. We learned a couple of lessons for reinstalling doors (e.g., don't take the hinges off).

10/18/02: Tom went into work; the first (and last time, since today is Friday) this week. As nice as it was to have alone time, I got bored in the mid afternoon. So, I must be feeling better! I finally spoke with my oncologist about the painful port, and she prescribed an antibiotic (levofloxacin again). Today is the first day that I have biked in 5 days, trying to give the incision more time to heal. Even tho it is cool out, I'm still in shorts. I feel a small cold coming on.

10/19/02: Chia-ling, Rich, Tom and I went apple picking today. There weren't that many apples left, but the ones that were there tasted wonderful. I was concerned about my legs getting cold, but it wasn't bad at all. I had my 6-month party; over 30 friends/family came to celebrate!

10/20/02: We went canoeing today at the Delaware and Raritan Canal State Park. It was beautiful; half of the trees along the canal are changing colors. The water was cold, but none of us got too wet. Chia-ling and Rich both left for home.

10/21/02: I had an oncologist appointment today, just a check-up. She wanted to delay the next chemo until Nov 10; since my birthday is that week, I suggested earlier or later, so she moved it back to Nov 13. I am going to continue to try to get it a bit earlier (Nov 6 would be nice). She wants a longer break to make sure that I have recovered (remember, I had the toxicity problem last chemo). Blood-work-wise, I have recovered--my WBC is 22.6 (the range is 4-9). My hemoglobin and platelets are a bit low, but that didn't stop chemo in the past. She was happy with the way that port was healing. She mentioned that if my next scan results aren't promising, she would suggest a few trials; one of them is the PS-341 trial being run by Dr. Maki at MSK. This trial even has a subgroup that is for patients with sarcomas that are usually associated with pediatric patients, of which Ewing's sarcoma is a good example. I'm doing well physically (the chemo was long enough in the past), but the longer break in treatment bothers me. I want to get on with it, and get it over.

10/22/02: My cold is almost gone. I biked 45 minutes; it felt much better than my previous ride. I wasn't out of breath as much; Tom thinks it is as much due to additional air in my back tire as to my improved blood work.

10/23/02: A couple of days ago, I started little organizational tasks around the house. I am doing one or two a day, so at least at the end of the day, I can feel like I have done something. (Remember to tell me how organized my house looks next time you visit.) I still can't make it thru the first few pages of a paper that I am reviewing for a conference; perhaps it isn't me and the drugs, but the paper? Bruce H. read the first few pages and stated that it was poorly written. I biked 45 minutes; Tom wasn't home so I had to get myself out of the pedals (usually he twists the leg for me). Daniela came by for a quick visit and Juan Carlos came to dinner.

10/24/02: It's cold out there; almost too cold for shorts. I'm still taking afternoon naps; I'm not sure if it is due to the chemo/cancer fatigue, or the cold that is taking a long time to go away completely. I biked for 45 minutes.

10/25/02: I finally did one of those things that I have been wanting to do for years: I started putting recipes online. Currently, I just have the ones that people have asked for in the past. We finally got the heaters and the t-molding for the basement apartment in the mail today (so, we'll be working on installing both this weekend). Starting a few days ago, my incision started to not sting; pants still hurt, but at least we are moving in a positive direction. I biked for 50 minutes.

10/26/02: We installed the t-molding. I biked for 50 minutes. I concentrated on using the left leg, and got some thigh burning as a result.

10/27/02: We (Daniel, Tom and me) went row boating with Mom in FDR Park in Yorktown. Dad took pictures of the fall leaves. A very pretty park; we spent an hour walking around and catching falling leaves. I did too much running/walking on uneven ground; my ankle was quite swollen when I took the support off.

10/28/02: Tom stayed home from work. He worked for a number of hours, and then we installed 2 heaters in the basement apartment. I wore long pants for a couple of hours; first time since April! I biked for 50 minutes.

10/29/02: Sarah and Miles came by for a visit and food shopping. I biked for 50 minutes.

10/30/02: Juan Carlos came to dinner. I biked for 50 minutes.

10/31/02: Susanne, Daniel, and Daniela came to dinner. I biked for 50 minutes.

11/1/02: Dina and Neal came to dinner. I biked 50 minutes.

11/2/02-11/4/02: Tom and I went to LA/San Diego for a long weekend. Since I have some extra time where I feel pretty good, it seemed like a good time to travel. We visited family and friends. We saw cliffs, went to bike stores, went thrift-store shopping, ate Mexican food, and sat around and talked. We walked too much, ate too much, and didn't sleep enough. But, that is the standard for vacations, right? I'm looking for a "new" bike, which explains the trips to bike stores; I got fitted for a Giant (small) and a Trek (50cm). ("New" to me, used from someone. I have been looking on eBay.)

11/5/02: I experienced some really neat pitting edema in my lower left leg. I'm not sure of the cause. I made a smiley face with my fingers that stayed for over an hour. I biked 55 minutes.

11/6/02: I saw my oncologist today. We hope to start chemo again on Nov 13, but I have to have blood work done on Monday since my WBC isn't high enough now. Hopefully, it will be okay on Monday. She thinks my concentration problems are chemo-related, but didn't have any ideas on the daily headaches. I was going to add more recipes online, but my headache took longer to go away then it normally does. I biked 55 minutes.

11/7/02: Yesterday, my oncologist asked why I had been gaining weight. She thought that I had stopped biking! I think it is the chocolates that people have been giving us. So, no more chocolates. I biked 55 minutes.

11/8/02: I biked an hour.

11/9/02: We helped Lisa install a Pergo floor in her kitchen. Mom cooked a wonderful birthday dinner for me; Matt, Karen, and Lukas came over to the folks for dinner. Mom, Tom and I went to see if a bike that I saw advertised on eBay fit me; the woman lives a few miles from the folks. (It did, and it was a wonderful ride. A steel frame with dura ace components.)

11/10/02: We spent the day at Tom's mom's house. We did some shopping, and a lot of relaxing.

11/11/02: I got blood work done; my WBC is 3.5, with the low end of the range at 3.54. So I will be going in for chemo on Wed. (Nov 13). I found out that 2 of my e-sarcoma friends died over the weekend. Their deaths weren't unexpected, but still very sad. (Since my cancer is so rare, a lot of us with it are joined to a mailing list for parents and patients with the cancer. There are 30 or so "active" people, and another 100 or so who post every few weeks or months.) Another e-sarcoma friend called me for help with his wife's case; she is just starting a 3rd line treatment and he wanted suggestions of doctors or treatments that they should ask their doctor to consider (the standard protocol is the first-line treatment; the 2nd-line treatment is the one that I'm currently on). These made it a slightly depressing day. I biked an hour.

11/12/02: I have received many calls and emails wishing me a happy birthday. Tom got me a bike for my birthday; a used Aegis carbon fiber bike purchased on eBay (Campy Chorus components, Speedplay pedals, 50cm frame, purchased in '97; this is what the current model looks like). I'll post a pictures when I get it. I biked 45 minutes.

11/13/02-11/17/02: Back in the hospital for chemo.

Sixth In-Patient Chemo Experience

Throughout the week, they found traces of blood in the urine. They monitored my urine output more closely, and monitored my BUN level (which is related to the kidney functioning).

11/13/02: I'm on the regular cancer floor. I have a young roommate, who seems very nice. She also has a sarcoma with lung mets; hers is in her heart. We compared cancer stories. I don't think she had met anyone else that she has spoken with in detail about their diagnosis, etc.

I biked 45 minutes. The seat on the exercise bike was very uncomfortable. It might have been better if I was wearing biking shorts, but I'm not sure.

Nick and his son, Brian, came by for a visit in the evening. Brian drew on the back of some of Tom's work briefs, and we spoke about granite, which Nick is ordering for his kitchen countertop and backsplash.

11/14/02: Dad came to visit and spent quite a long time. We worked on a puzzle together. We talked a little bit about death which arose from a discussion about some of my "Ewing Sarcoma friends" that have passed away recently. This led to a discussion about how friends and family have dealt with death resulting from cancer. We also discussed different strategies for putting puzzles together, what makes some puzzles more difficult than others, biking across the US, "collecting" bicycles, how different bicycles serve different purposes, starting a "used" bicycle shop, about the possibility of visiting one or more universities in Denmark next summer and doing some research and/or lecturing, the state of food and service in the hospital, and about Dr. Keohan's visit with us. She mentioned that if the lung nodules are stable, we might want to consider having them resected for cure. (This seems like good news). After Dad left, I had time for a nap before Tom, Wee Teck, and Michele came. Tom kept me company while I was biking; he ate the left-over dinner I saved for him. I was in bike shorts and that was a bit more comfortable than standard shorts. At the end of my 45 minute ride, Wee Teck came by to load some movies on my laptop. Currently, movies are way too long for my attention span. Michele gave me some candles as birthday presents. They are healing candles with proverbs. After the visitors left, Tom and I tried to find a lounge where we could watch StarTrek on my laptop. All of the lounges were used, so we sat by the bikes; I was in a chemo chair, and Tom was in a wheelchair. We couldn't watch StarTrek (missing software drivers), but watched part of some movie. Tom tucked me in.

11/15/02: Mom, Dina, Susanne, and Tom are the visitors for today. Mom first; probably in the morning. We heard about a cancer care talk about lung cancer. I biked for 30 minutes, and we attended the talk. I didn't find the talk that interesting, so I cut out for a nap. It was just the right time for me to arrive; I got on a conference call with my department at the office. Once Mom left, Dina and I played skip-bo for a while. Susanne visited while Tom was here. I don't remember much of the visit, so I must have slept thru it. (When I asked Susanne, about the visit, she said the following: Well, there isn't much that I can say. You slept most of the time. When you woke up, you seemed to enjoy the Pecan roll that I had brought you. We talked a bit about how you kept yourself busy all day long. We then talked a bit about your blood results. The nurse came by a few times, as your machine kept beeping. Soon after that I had to leave.)

11/16/02: Karen and Tom visited me today. I didn't remember much of the visits.

11/17/02: Dr. McKhann dropped by; he is the surgeon who did the original biopsy. He thinks, with the amount of radiation that I have had, nerve reconstruction is not a good bet. (And, even if I could have it, it would take 18 months+ after surgery to get use from the nerve.) Instead, he suggested to move part of the peroneal tendon to work as tibia tendon. He doesn't do this surgery, and doesn't think Dr. Lee does, but that Dr. Lee would know who would. I cried during most of his visit; I'm not sure why. Tom came around 7pm. We were both waiting for time to pass. I slept most of his visit. We left at 11:15 or so, Mom and Dad picked Tom and me up to go to their home.

11/18/02: Tom and I came home to folks last night; Tom doesn't like me spending the first day alone when I get out of chemo. Mom and I straightened a number of her drawers in the dining room. It felt nice to do something "useful"; normally, the first day out of chemo isn't a good one.

11/19/02: This morning, we straightened Mom's freezer. Mom brought me home. I found out the bad news that the bike that I was going to buy via eBay was not available (the seller said that she was recently robbed, and it was one of the things that was taken), so I made arrangements to buy another one. It's the steel frame with dura ace components from a woman who lives close the the folks. It is a green/blue; not the color that I would have picked, but it is a wonderful ride. I should be getting it next week. I got the new ankle support; it hurts when I walk with it. I am hoping that it was because I was trying it at the end of the day.

11/20/02: Sarah and Miles came for a visit. Miles is over 15 lbs, and very cute; he slept most of the time that they were here. I'm feeling okay; my tummy is very tender. I biked 45 minutes; I must be anemic because I had lots of head pounding during it.

11/21/02: I'm feeling pretty good today! I biked 40 minutes (someone came to the door).

11/22/02: I went into the office today; it is very nice to see friends. At the same time, it was sad since it was the last day for the departments in my center (departments of 5-10 people are grouping into centers, which contain 3-6 departments at Bell Labs) to be in the same center. Daniel and Susanne came to dinner.

11/23/02: Tom and I spent some time straightening the house; it gets pretty bad between the 5 days in-patient and me "slower" the week after. Casaundra brought me out for a birthday lunch. I biked for an hour.

11/24/02: We went into Chinatown for dimsim with Wee Teck. We went to the folks in the afternoon to get the new bike. I spent the night so Mom could bring me to the doctor's in the am.

11/25/02: I had an checkup with my oncologist. Mom brought me, and we learned a few things. There's no need to "rush" things since I currently have no symptoms of disease (one possible symptom is shortness of breath). She wants to repeat the scan in the Dec 5-10 time frame; this will give the mets a chance to show response to the chemo. We discussed the next step... if the scans show stable disease (which we call it even if are a few new growths), we might "wait and see," rescanning after 3 months. (At this time, if I still have stable disease, we would look into resection of the lung mets.) Now, as a next step, if the scans don't show stable disease, we would try another chemo. We don't know now which ones will be considered; I gave her 2 sets (Topotecan, Vincristine, and Cyclophosphamide, and Cisplatin and Gemcitabine) which are currently being used on two of my e-sarcoma friends with lung mets. She said that Topotecan is currently "in vogue," and might be worth trying. I have already had Vincristine and Cyclophosphamide, but they might work for me with the addition of Topotecan. She said that Cisplatin and Gemcitabine are commonly used for lung cancer, and that Cisplatin is quite toxic.
We spoke a little bit about trials; I mentioned that I would be interested in trying another protocol before going on a trial. She mentioned a trial that she is starting up with others which I might qualify for; it tests Topotecan, Carboplatin, and Ifosfamide. She gave us her opinion that the real treatment for my cancer is in working with proteins which will fix the translation gene, but there aren't any trials in this approach.
Today is Tom's and my 13th wedding anniversary. The new bike is on the trainer! I biked for an hour; it was really nice. I shifted gears, which I never did much of indoors (my previous bike's gearing wasn't conducive to this).

11/26/02: I biked an hour. Tom joined me (he was biking on the stationary bike).

11/27/02: I am trying to clear some of the fruit from my freezer; I made raspberry jam.

12/1/02: We spent a busy few days at my folks (Thanksgiving day and Friday) and Tom's mom's (Saturday and Sunday). There were 17 people for dinner on Thanksgiving (all of my sibs and their families). Rich came down from Boston and spent part of the holiday/weekend with us. I biked on Thanksgiving (Tom really wanted to bring the new bike and my trainer with us). I found that I can wear my new brace with a new pair of shoes. I'm losing my hair again. It was nice to have it for Thanksgiving; Miles and I looked similar. I biked an hour.

12/6/02: Since it has been so long since my last chemo, I'm not feeling much like a cancer patient, with the exception of the current hair loss. Tom will be shaving it tonight/tomorrow; I'm tired of finding it in my food. I have a cold.

12/13/02: The cold is taking a long time to good away. I've been keeping busy during the days by helping Tom (typing some for him), and finishing the holiday shopping (isn't the Internet great?). We have a busy weekend planned: my CT scan in the morning, visiting with Tom's brother Joe, and his family (Bethany and baby Joe), and going to a concert with Bruce and Sarah.

12/17/02: We got some of my scan results back; no mets in the abdomen and pelvis! We don't have the chest results yet. I have been able to increase my biking to 65 minutes a day for the past week or so. Starting today, I will move to 70 minutes. The main problem isn't energy, but is boredom. There's only so many times one can watch Commando.

12/18/02: Well, the chest CT scan has shown that there is disease progression (i.e., I have more mets and the previous ones are a bit bigger). They are still small. So, now I will be going to Dana Farber in Boston and MSK, investing trials. (My oncologist also mentioned Bob Benjamin at MD Anderson.) I am trying to make these appointments now. My oncologist has a Phase I/II trial that I can get on, but I could also get on it after I try other trials. (Some times, too much treatment disqualifies you from trials.) We briefly discussed Gleevec, an oral chemo with very few side effects: using Gleevec might buy me some time to check out the trials that I qualify for. I would have to commit to being on Gleevec for 2 months (it is known to take a while to start working). I have been having pain in my calf for a few months, and it is increasing a bit. I'll be having an MRI of the leg on Saturday, hopefully buying me piece of mind. My port is also painful again, so I'm back on the antibiotic. Due to spending time with making appointments, I only got a 45 minute ride in. Tom and I went to Girija's for dinner; it was a nice distraction from the cancer talk of the entire day.

12/19/02: Leelu came over and we baked Christmas cookies. Due to the standing that the baking required, my leg was really sore, so I skipped my evening ride. I spoke with Dr. Meyers at MSK (he's the ped oncologist). He said that he'll discuss my case with Dr. Maki before I see him so that I don't need two appointments to get input from both doctors.

12/20/02: I had an appointment to see Dr. Maki at MSK today. (I met Tom and the folks there. To get there, I walked to the PATH station. This has been the first time I did that walk since the surgery. In the past, I would bike to the PATH station.) He said that, for the PS-341 Phase 2 trial, I need a tumor of at least 1 cm. They do have a Phase 1 trial of an inhalable form of Adriamycin which I can get on. We discussed at least 4 other options which would all be "reasonable things to try": Topotecan, a phase 2 Topotecan study, a phase 2 Gleevec study, and an interferon study. I just spoke with the nurse of Dr. Demetri at Dana Farber; after reviewing my records with Dr. George, they have nothing to offer me now. (And, they wouldn't have done anything differently with my treatment.) I was told that I can call them every few weeks to see if something opens up. I biked 70 minutes.

12/21/02: I had an MRI of my leg today. We went to my folks' annual holiday party.

12/23/02: Auntie spent the day with me today; we finished up last minute shopping and took care of some errands. My garage had many bags of clothing, etc. to be donated; I was having problems walking in it. I biked 70 minutes while Tom and Auntie did yoga.

12/26/02: Tom and I had a very nice Christmas Eve at my folks and Christmas Day at his folks. Aunt Mary Lou, Auntie, Grandma Shriver, and Grandma Connell joined us (Mom, Dad, Bruce, Sarah, Isabel, Miles, Matt, Karen, and Lukas) for dinner, gift opening, and the traditional Ris Alamande. (We received lots of nice gifts to play with; I got a Dr. Seuss sweatshirt.) Miles was sick so I wasn't allowed to hold him. The drive back from Long Island took twice the time due to the snow. I called about my MRI results; the replacement staff didn't have the password to access my test results, and the doctor is out until Monday. I biked 70 minutes. I got out of the saddle for a bit (20 seconds at a time), but the pedal stroke is very rough. Plus, I end up putting all of my weight on the strap of my leg brace.

12/27/02: I walked to the Newport Mall to do some shopping. I am still getting out of breath when walking, and since I don't have my cold anymore, I can't blame it on that.
Some of the members of my Ewing's sarcoma email list have organized a virtual prayer vigil for people with Ewing's sarcoma for Dec. 29. I biked 65 minutes.

12/28/02: After a nice breakfast with Juan Carlos and his friend, Maike, Tom and I straightened the garage. We now have room for another few bikes :). Wee Teck and Daniel came for dinner and a movie. I biked 70 minutes.

12/29/02: Jin Joo and her family came to visit. We had a nice dinner after going to Liberty State Park to see views of the Manhattan skyline. (The park is were I used to bike my laps; it was quite sad seeing it again.) We worked on a puzzle. I took a day off from biking due to leg pain; I have this tendon-like pain after biking if I don't soak in hot water. (Pictures)

12/30/02: We (Jin Joo and family and I) started another puzzle today. This one seems quite hard. Auntie and Aunt Mary Lou came for dinner and will be spending the night. I spoke with Dr. Benjamin's nurse (at MD Anderson); she discussed my case with the doctor. I qualify for a phase 2 trial of Exatecan; this drug had one partial response for an ES patient in the phase 1 trial. The trial would be 30 minutes of outpatient therapy for 5 days every 3 weeks. I would have to go to Houston to receive the treatment. (I haven't heard of the drug before.) She also mentioned trials of Gemcitabine and Taxotere. She said that they (my oncologist and Dr. Benjamin) share many patients, which is nice to know since Dr. Benjamin is head of the MD Anderson sarcoma center. We finally got my MRI results -- there is no tumor in the leg!!! (We feared that there was one causing the recent pain.) I biked 65 minutes.

12/31/02: I spent the day at Bruce and Sarah's. I visited and fed Miles. Isabel and I played a few games, and I read a number of books to her. Tom and I went to Wee Teck's in the evening. Many of my Bell Labs friends were there; it was sad to see them. In the past, we would have had short work-related discussions, and gossiped a bit about the situation at Lucent. I'm not caught up either their work or the situation at work.

1/1/03: Tom and I had a lazy day, straightening the house after the holidays. We found a roof leak in one of our closets, so the house appears less straightened then when we began. One of Tom's new year resolutions is to try at least one recipe from the large collection of recipe/cook books that we own. Last night, he made roasted mushrooms. I biked 70 minutes.

1/2/03: Lisa and I went to Ikea together. And, then we made dinner together with Tom's help. I read 4 articles which Judi Flynn faxed to Dad at my request. No much new, but it is reassuring to see that there wasn't a treatment discussed which I haven't tried but is normally successful (i.e., my oncologist has done a good job at treating me). I spoke with Dr. Maki at MSK; he recommends the inhaled doxorubicin study first, and then the Topotecan study. I spoke with Dr. Keohan (my oncologist); her recommendations are (in order) the Sugen study (if I can get on it at Dana Farber), inhaled doxorubicin, Gleevec, and then her TIC (Topotecan, Ifos, Carboplatin). Since the Sugen study is only open for GIST I'll go for the inhaled doxorubicin study. The dox. study is run by an oncologist at MSK who specializes in pulmonary disease.

1/3/03: I'm starting to see a pattern with the pitting edema that I get on my foot; if I have an active day, I pit in the evening on the bad leg. I spoke with the lung specialist at MSK; someone will call me Monday or Tuesday to tell me when the next trial opening is. It might not be for 3-4 weeks. (They are currently up to a dosage of 9.4 mg/m^2, which the doctor thinks might be close to the maximum dose that they test. She mentioned that there are 6 institutions in the trial.) I biked 65 minutes.

1/4/03: Tom, Daniel, and I went to see the second Harry Potter movie. Then, Daniel and I finished the puzzle that Jin Joo and I started a number of days ago. Tom built a shelf in our closet where the roof leak leaks into so we were able to put the games and Christmas decorations away.

1/5/03: Girija, Leelu and their mom visited me for lunch. We had a nice visit. Pictures. Even tho I wasn't that active, my leg was swollen from the ankle to the mid-thigh. I biked 75 minutes.

1/6/03: I spent the day in Brooklyn with Sarah. We organized her kitchen cabinets; I found my second calling... organizing cabinets. There is a lot of optimization that can be done: do you put all of the sugars together, or have the ones that you use the most frequently close at hand? We didn't get home in time for me to bike.

1/7/03: My hair is growing back in, and I have little "eyebrow" hairs again! Tom slept with ear plugs in last night. (The sound of my breathing has been keeping him up. We don't know if it really is louder [it seems to be], or if we are just listening more.) It was his first good sleep in many weeks. I got a call from Dr. White's office (the lung doctor); I have an appointment for next Monday. They need to do a chest x-ray and a lung function test to determine if I can be in the inhaled dox. trial. I biked 70 minutes. [See Introspectives Along the Way page 4.]

1/8/03: We saw my oncologist today about the leg swelling. Just like bringing your car to the mechanic for a noise and the noise isn't there, my leg wasn't that swollen. She was under whelmed. She did mention another trial at MSK that we should consider: Doxil and VEGF. After my support group meeting (first one that I have made in 4 months, and disappointing; too few conversations about issues during treatment and too many about after treatment is done), Tom and I had dinner with Dina and Neal.

1/9/03: I biked 70 minutes.

1/10/03: I wanted to gave my leg a rest, so I mostly sat or read today. I also didn't wear my brace; I wanted to see if the brace compressed the ankle somewhat (i.e., would I get more swelling without the brace). It didn't seem to.

1/11/03: Tom, Rich, and I helped Bruce paint Isabel's and Mile's new bedroom. Wee Teck came to dinner. I biked 60 minutes.

1/12/03: With Rich's help, Tom and I were able to do a few house chores. We mounted our Bose speakers in the living room. I'm a little worried about my appointment tomorrow; what if I don't qualify for the trial? Even though I have a plan for what trial to try next, I really want to start chemo again soon. I biked 65 minutes.

1/13/03: We (Mom, Tom and I) spoke with the oncologist leading the inhaled drug trial. I'll go for tests on Thursday, and will probably begin the chemo on the 28th (15 days from today). She didn't think my shortness of breath was due to my lung mets. Curious. I also had an ultrasound on the leg to see if a blood clot was causing the swelling: no blood clot. Tom and I found an orchid on the side of the street which he repotted. I biked 60 minutes.

1/14/03: Juan Carlos visited for a couple of hours in the afternoon; I baked cookies. I biked 65 minutes, watching the first episode of Buffy Season 3.

1/15/03: Susanne came to breakfast; Hein dropped in for a few hour visit on his way back to Amsterdam. I found out from my oncologist that there isn't a trial that I qualify for at MSK with Doxil/VEGF as she had hoped.

1/16/03: I had my baseline tests done today for the clinical trial. It took 4 hours; I had very little waiting time, so it was mostly test time. After the tests, I had lunch with Bruce. I biked for 65 minutes; Tom joined me in biking for most of it.

1/17/03: The bruise from the blood draw yesterday is making typing quite painful. Since it is so cold, I spent some time looking for a bike tour. I hope to go on one as soon as it is warm enough. I biked for 65 minutes.

1/18/03: We helped Bruce with painting again. Phil and Casaundra came to dinner. No time for biking.

1/19/03: Phil, Mimi, Austin, and Kelsey came to breakfast. We gave our ping pong table to them. Martin came to dinner; this was the first time we've seen Martin in two years or so. He hadn't known about my cancer; it's been quite a while since someone has come over not knowing about it. I biked for 65 minutes.

1/20/03: Mom, Tom and I met with Dr. White again. Since all of my test results were acceptable, I signed the consent form for the trial. The only test result that we knew how to read was the chest CT scan. The report wasn't as meaningful as it could be because the radiologist didn't compare it to my previous scans. But, we know that the nodules are continuing to grow; the largest is now 1.8 x 1.6 cm. Mom and Dad cooked us a nice lunch to celebrate Matt and Karen's wedding anniversary. Lukas is saying "cookie," "daddy," "apple," and lots of other words. I did too much walking today to bike.

1/21/03: So, now one of my mets is big enough to biopsy, should we? I spoke with my oncologist, and she said that, at this point, a biopsy wouldn't give any information that we would use right away. I confirmed this with the PI of the trial (Dr. White). The PI called to tell me that I will be receiving the drug at the lower dosage (7.5 mg/m^2) because a patient at another hospital has a toxic reaction at the higher dosage which was my planned dosage. I biked for 65 minutes.

1/22/03: I helped Mom decide which biking shorts to order for her and Dad for the upcoming bike tours. I biked for 65 minutes.

1/23/03: I had my dosing study; part of it was a dry run for receiving the chemo. I biked for 60 minutes.

1/25/03: Wee Teck and Jasica came for dinner and a movie. I biked for 80 minutes.

1/26/03: I'm starting to get excited about the new chemo. I don't think I would be as excited if it were an IV chemo; there's definitely something neat about the method of getting it. Michelle came for lunch. Tom measured my hair length; it is 3-4 mm now. I biked 65 minutes.

1/27/03: I biked 70 minutes.

1/28/03: First day of the new chemo. No biking this evening; feeling very tired.

First chemo on the inhaled trial

Wee Teck and Jessica came to dinner a few days ago and brought some very nice baklava. The pieces were made with pistachios or cashews; both have the same oil that poison ivy has (urushiol). I'm very allergic to poison ivy, and, as I found out yesterday, I'm now allergic to pistachios/cashews. Imagine poison ivy on your lips, on your gums, and on the roof of your mouth. My chemo treatment was pretty rough today, and it might have been partially due to my allergic reaction to the pistachios/cashews.

The chemo treatment wasn't as easy as I thought it would be. Tom dropped me off at 8am. It took quite a while for them to set up and for the chemo to arrive. While Mom and Dad and I visited for an hour, Jud (the respiratory therapist) set up. He put up the tent and put together the box that contained the mister for the chemo. Then the nurses accessed my port (for blood drawing). They put EKG sensors on me, a blood pressure cuff on my right arm, a gown, a cap, latex gloves, an oxygen monitor on my finger, a nose clip, and I got inside the tent. Dad was taking pictures during this time. At this point, Dad and Mom went back to the waiting room, and the treatment began.

Jud practiced some breaths with me. My treatment was 20 breathing cycles, 5 minutes of rest, and 20 more cycles. As with the dosing study, a cycle was 5 normal breaths, and then a deep breath which is held for 4 seconds. The deep breath and the first breath following the deep breath caused me to cough. It was a good thing that I was in a tent or the observers would have been breathing chemo with me! (That's assuming that it would have made it thru their masks; they were wearing gowns, latex gloves, caps and masks.) While breathing, I also seemed to produce a lot of saliva, causing me to drool. I had to spit in a special cup (since it contained chemotherapy) instead of swallowing. (Of course, I swallowed a number of times, forgetting that I wasn't supposed to.) The rash on my lips caused the mouthpiece to be uncomfortable.

The chemo itself (or the alcohol that it was in) irritated my throat. The doctor wanted me to breathe less deeply, which I found hard since it felt like I wasn't getting enough air. Plus, there were 6 people watching me breathe; it is hard not to think about your breath in that situation. Jud said that I seemed to have more problems with the treatment than previous patients.

Once the chemo was over, a blood sample was taken. Another one was taken 25 minutes later. And, again after 30 minutes. Then, we went to have lunch. Dad left to go home. Another blood sample. Mom and I went to the rec room and did a craft project. Another blood sample. We went back to the rec room, and listened to a vocalist. Mom left for home. Finally, the last blood sample at 4:45. Tom got there at 5:45 to bring me home.

1/29/03: My throat is scratchy and irritated. I have a cough also. And, I'm more fatigued than I have been lately. I biked 60 minutes; I didn't feel any different in breathing.

1/30/03: I slept most of the morning away. I biked 70 minutes; I coughed a lot while biking. The cough isn't a normal I-have-a-cold cough, but seems in the lungs. Which makes sense.

2/1/03: Another tired day, but I was able to keep my nap to under 2 hours. Rich and John L. both decided to ride with Tom and me and the folks on the bike tour in Louisiana. Joe and Bethany and baby Joseph came to dinner. What a strong baby Joe is! At 18 months, he is sitting in a chair and feeding himself with a fork. I biked 60 minutes, again with a lot of coughing.

2/1/03: My chest seems smaller; I can't think of another way to describe the difficulty in breathing deeply. Tom and I went to First Saturday at the Brooklyn Museum of Art. We danced to a few songs; as long as I didn't move my foot much, dancing was enjoyable. I biked 70 minutes, but without much energy.

2/2/03: Jon Atkins came this morning; he'll stay with us for a week. Chia-ling came this afternoon; she will stay two days. She requested Chinese food for dinner after eating German and Danish food for 5 days. My brother Mark called and we had quite a nice chat. No biking. My coughing was a bit less.

2/3/03: Tom and I went to the dentist. I have seen many emails in my Ewing's sarcoma email list about the kids having poor dental checkups due to the chemo, so I think I have an excuse for my poor results. Chia-ling and I went shopping. Before today, I was thinking that perhaps it was time to see if I could go back to work since my current chemo is supposed to have few side effects. But, after browsing in a store for 30 minutes, it felt like it was nap time. Tom and Chia-ling did yoga while I biked 65 minutes. Chia-ling took pictures of me on my trainer (photo, photo). In the second picture, you can see the brace I use for biking on my left leg.

2/4/03: Chia-ling left for home. I biked 75 minutes with no coughing.

2/5/03: Susanne came to breakfast this morning. I didn't need a nap today! Last night, Dad and I worked on the donation forms for the bike tour in Louisiana, so I added links to them at bike tour. I was hoping to continue to learn FrontPage, an html tool, but instead I read a paper for John Wilkes. I biked 70 minutes.

2/7/03: Last night, as Tom and I were settling down for bed, I noticed that the skin around my port was wet. On closer examination, I noticed that the outer port (the one which has gotten the skin infections) was poking thru my skin. I had a hole about 1/4 inch long; you could see the plastic of the port thru the hole. Tom brought me into Brooklyn with him, and, after speaking with my oncologist's receptionist, Sarah brought me to Columbia to see the doctor who put in the port in April. He confirmed that the port was coming thru the hole in my skin, and said that it had to come out. After confirming with my oncologist that he should take it out, he removed it. It wasn't quite the "snip, snip, pop" that he said it would be. He gave me a few lidocain shots and was able to use the same incision that he made when he put in the port. The procedure lasted 20 minutes or so and Sarah was able to stay in the room with me.

So, why did I have this problem? It was popping out because I developed "thin skin" around the port. I had thin skin because of the skin infections. I got the skin infections because of a buildup of serum-like fluid around the port called seroma. Seroma is one of the complications which occurs in 5% of the cases. I'm disappointed about having the port taken out; on my email list, it is normally done at the end of chemo and almost like a rite of passage from a patient to a survivor. The removal of mine doesn't mean that. Of course, I brought it home in a jar with me. It looked just like it was supposed to. No biking this evening; I'm too worn out.

2/8/03: Tom, Mom, Dad, and I went to a program detailing current cancer research. We spoke with Dr. H. Kaufman from Columbia about immunotherapy for sarcoma; he said that an antigen for sarcoma had been found and might be in Phase 2 trials. We'll look to see if I qualify; I'm definitely on the cutting edge of research. Tom and I went to Wee Teck and Jasica's wedding banquet, giving us the opportunity to visit with Bell Labs' friends. John L. came home with us and spent the night. I biked 70 minutes, most of it while Tommy R. was visiting.

2/9/03: Our guests are leaving today. My port incision is healing well. I biked 60 minutes.

2/10/03: I spent the day with Sarah.

2/11/03: I feel really good today. My nap was short. Since the cough went away, I think I'm having an easier time breathing. I biked 60 minutes today.

2/12/03: Tom has the day off today; he said that it will be the first day in many months that he doesn't have to worry about bringing me to an appointment or have to worry about being behind in work. I had my support meeting this evening; only a few people showed up, probably due to the weather. Juan Carlos brought me out for dinner. I'm continuing to read about immunotherapy; I have found that there is a trial at Columbia for adult sarcomas for which I might qualify. I biked 60 minutes today. [See Introspectives Along the Way page 5.]

2/13/02: Mom, Dad, and I attended a funeral today. It was very sad. Part of my port incision is infected; hot compresses are helping. Daniel came over for dinner and a movie. I biked 60 minutes today.

2/14/03: I biked 60 minutes today.

2/15/03: Juan Carlos came to breakfast today. I biked 60 minutes today. We went to Wee Teck's for dinner (and a movie [The Long Kiss Goodnight]); Cliff and Chee Yong were there also.

2/16/03: Eran and Dorit and the kids came for brunch (and bought it too). Many thanks for the wonderful brunch! Natalie and Karen came for dinner. No biking, but we got some exercise via snow shoveling.

2/17/03: What a day to have to go to the hospital! We got over a foot of snow last night, and it is still snowing. In some places, there were snow drifts of over 2 feet which we had to go thru. But, I had problems with even a few inches of snow due to my inability to control my ankle. Tom and I walked in the streets in Jersey City and Manhattan, and saw very few people in the morning. There were a few of the subway stations that had a lot of snow inside. Since a number of the subways weren't running, and those that were were running less frequently, it took over 2 and a half hours to get into the hospital. The doctor didn't make it, but I was seen by a fellow. I took my pulmonary function test, and didn't do as well as before. (For example, my lung volume went from 101 percent to 88 percent.) But, since most of my results are still above normal, we are "on" for the second cycle of chemo. I also had a chest x-ray, and after asking the fellow questions about it, he showed me the x-rays. At least 6 mets were visible, but I think it was only because of the arrows that the radiologist added which pointed to the nodules. I biked 60 minutes.

2/18/03: I had my second cycle of chemo today. I thought it went a bit better than the first cycle, but Jud seemed to think I had more problems than the first time. They (Jud and the doctor) aren't sure why I'm having such a hard time with it, but I'm having more discomfort than others who have received it. The doctor said that she isn't concerned with the new PFT values; they can vary by up to 5% for no known reason. (Of course, mine varied by more than 5%.) Natalie came; between the 5 blood tests needed, we did some tiling projects in the rec room. Juan Carlos will be staying with us for the next 2 weeks.

2/19/03: I'm in San Diego, visiting family with my folks. The weather is wonderful after the snow of NY/NJ. The cough seems pretty much like it was a day after chemo last time.

2/20/03: We were going to go to Catalina today to visit Greg and his family, but high winds caused the ferry service to be out. So, instead, we took care of errands around the house. I'm not as tired as last time, but I'm not able to sleep at night very well either.

2/21/03: Tom arrived in San Diego today! We saw Dad receive the 2002 Richard E. Merwin Award for Distinguished Service to the computer science profession at large. The citation reads, "For outstanding service to both the [IEEE] Computer Society and the computing profession that continues to have enormous impact on responsible governance, high quality publications and conferences, and the international community." Avi, my previous boss, also received an award. He said that people at Bell Labs haven't forgotten about me and think of me often. They don't tell me this directly because they don't know what to say. (If you, the reader, find yourself in this position, just write me an email, telling me what is going on in your life. As to be expected, my world is smaller since I'm home so much, and would appreciate knowing what/how my friends are doing.)

2/22/03: After breakfast, Tom and I were dropped off at Jeff and Leanne's; we got to see the new baby Zack; he's almost 7 weeks old. We went to a swap meet (which was a lot of walking). Jeff made a great dinner (one of Tom's favorites of meatloaf and roasted potatoes). I got a little bit of time with Jeff and Leanne separately to talk about how I'm doing, etc.

2/23/03: We spent a couple of hours in the morning weeding Jeff and Leanne's backyard. Then a couple of hours of thrift store shopping. And, finally a family indoor picnic where my cousin, Greg, and his spouse, Elizabeth, and their two kids made it.

2/24/03: Tom and I are home now; we took a red eye flight last night. In CA, I found a very nice brace which looked like this, but it is falling apart already. I had some neat pitting edema. I visited Dina in the city at her apartment for a couple of hours. I biked 45 minutes.

2/25/03: I just found out that the Gleevec trial at Columbia has been closed for Ewing's sarcoma patients; they hadn't had enough successes. It still might be open at Duke. My oncologist from Columbia called me to discuss vaccine trials. She suggested that we test for an antigen (A-2) which is needed for most of the vaccine trials. The proper way of saying this is A-2 positive. 48% of whites have the antigen; hopefully, I will be one of them. I still have quite a bit of swelling in my lower left leg; I assume it is from the flight yesterday. I didn't have time to bike today; the guy doing the paperwork for our mortgage refinance came over an hour earlier than he was supposed to. Juan Carlos took us and his brother and new spouse out to eat.

2/26/03: Dad and I met with the chairman of the fund raising committee of the Sarcoma Foundation of America. This is going to be the charity that we are raising money for in the bike tour in Denmark in June/July. (Yes, there are TWO bike tours which we are raising money for sarcoma research. The first one is in Louisiana, and the second one in Denmark. I lived in both as a child.) I'll be spending a few days at the folks; I'm bringing a bike and my trainer so I can ride. Tom thinks I have the swelling since I haven't "biked the travel toxins" out. I had a PFT test this am; we are trying to see if the shortness of breath is caused by damage to the lungs. (My current problem is that I run out of air half-way thru a sentence. As long as I remember to breathe, I'm okay. So, this in it's self isn't bad. It's more the change that bothers me.) My "score" was better than last Monday, but still not where the baseline score was. I also had the blood test to see if I am A-2+. I biked 40 minutes.

2/27/03: Mom and I went to Curves, her exercise place. I was able to do all of the exercises, but found the seats of the machines to be uncomfortable. We had lunch with Karen and Lukas. I made a number of calls, trying to chase down loose trial leads. We found out that I don't qualify for the PS-341 trial at MSK since I am on the inhaled doxorubicin trial now ("no more than 1 prior chemotherapy regimen"). I biked 50 minutes.

2/28/03: Mom and I went to Curves again. Dad and I worked on press releases for the bike rides. We wrote a draft version of the "overview" of the Louisiana tour. Juan Carlos joined us for dinner, and moved back into his apartment. Rich is visiting for 2 days on his way to a conference. I found out that I'm not A-2+, so very few (if any) vaccine trials will be open for me. Dr. K (my oncologist) mentioned that we might be able to employ ET-743 for "compassionate use"; she will be attending a meeting April 1-3, discussing the possible trial (which has been discussed for 2 years). It's really frustrating that, in the past few days, in the few trials that seemed to be open for me are closing... I'm having fewer and fewer options. I started to gather and sort the trials.

3/1/03: Tom and I read over the recent test results. My chest x-ray of 2/18/03 showed some of the nodules being stable, a new growth, and the biggest nodule is still bigger (when compared to the chest x-ray 3 weeks previous). No sizes were given. We had a slow day at home with Rich. We then had dinner at Wee Teck's: very nice soup. I biked 65 minutes.

3/2/03: I biked 65 minutes.

3/3/03: Susanne came to breakfast. I biked 70 minutes.

3/4/03: Daniel took us to dinner and we watched a movie (12 Monkeys). I biked 65 minutes.

3/5/03: Mom found out that ET-743 isn't available for compassionate use, but there is a trial going on at San Antonio Cancer Institute. The breathing problem that I was having with running out of air while speaking is fading a bit, so it hopefully is a chemo-induced side effect. I attended a Rotary Club meeting with Susanne; they will take the bike tours on as projects; 5 people volunteered to help. This will hopefully help with the publicity. I biked 65 minutes.

3/6/03: It turns out that ET-743 is available for compassionate use on a case-by-case basis. This waiting is murder; why can't it just be Monday now, with us having the CT chest results? I'm ready to move onto the next step whether it be another cycle of the inhalation dox. or a new drug. I have been making calls and sending emails to medical oncologists who have conducted clinical trials with drugs that seem promising in my case, and not finding out much at all. I spoke with Dr. Mackall from the NIH about possible trials. They don't have any to offer me, but she suggested that we look into an anti-TRAIL trial; Philly (Fox Chase), Dallas, and San Antonio all have it. This is one of those trials where I would have to qualify for (based on my tumor having certain properties). She also stated that she thinks ET-743 and Gemcitabine + Docetaxel are reasonable things to try. She thought an allogeneic blood stem cell transplant (see her list of trials), cytop (cyclophosphamide and topotecan), and vaccines weren't worth trying due to my disease being too active. I biked 50 minutes; Tom biked with me.

3/7/03: Dana Farber called me back; no active trials there that they don't have at MSK. The oncologist with whom I spoke said that the ET-743 trial would be probably be coming in a few months, but would not include Ewing's sarcoma; he mentioned two types of sarcomas that would be covered, both beginning with the letter "l." Alan Siegel came to visit: we talked about dying, music and math education. No biking today.

3/8/03: I brushed my hair for the first time since May 2002! We spent the day with Tom's mom. We went to SUNY Stony Brook; Tom wanted to see a recently built building. It was neat but odd walking around the student union. The deli was still there which I used to buy Tom cookies with my meal plan dollars.

3/9/03: We spent part of the morning with Tom's mom and the rest in getting to Bruce and Sarah's. We had lunch, seeing Isabel and the ever-growing Miles, and Mom and Dad. I biked 65 minutes. We brought my "outside" bike in so that I could try different pedals to see if I could unclip. Happily, I can report that I have no problem unclipping from the Speedplay Frogs! But, I did have problems keeping the left leg clipped in. Plus, I kept hitting the chain stay (part of the frame) with my heel. So, we'll try SPDs next.

3/10/03: It wasn't a "good news" kind of day. Dad's a bit better at giving this news. Dr. White looked at the chest CT scan which I had done today and determined that there was additional growth. (She showed us [Mom, Dad and me] the scans; it looked like the largest mass doubled in size.) So, we have to find another trial or another drug. My PFT scores were about the same as last time, so they don't explain the increased shortness of breath problems. It might be due to the largest mass, which is very close to the heart. I'll have a ECHO soon to see if my heart function is okay. I biked 50 minutes; I didn't hit the chain stay as much as I did yesterday.

3/11/03: I spoke with Dr. Roger Cohen about the Phase 1 trials at Fox Chase in Philly. They have 3 that might be interesting for me, but no sarcomas previously entered, so there's not much to guide us. The 3 trials are ET-743 + Doxil, ET-743, and TRM. They are early in the trials, but it doesn't look like they will have space until May. He suggested that I enter the cancer center thru their sarcoma clinic with an appointment with Dr. von Mehren. I also spoke with Dr. Tanya Trippett, a pediatric oncologist at MSK about the Exatecan Phase 2 trial. The drug is well tolerated (i.e., fewer side effects), and had some successful Phase 1 results in heavy pretreated Ewing's sarcoma patients (i.e., patients who had tried a number of previous protocols). It would be 2 cycles (where each cycle would be 5 days of chemo (30 minutes each), and then two weeks rest) and then a scan to see if it was working. If the drug is working, one can continue on the protocol. I biked 55 minutes.

3/12/03: I went to my support group meeting this evening. Afterwards, Juan Carlos brought me out for a burger. No time for biking.

3/13/03: Matt, Karen and Lukas came for a visit. Wee Teck and Ms. Yan came for dinner. I biked 50 minutes; it was without my biking brace since I got a heel blister from walking with a brace on incorrectly for my support meeting yesterday.

3/14/03: Dad put the nice logo that Matt designed for Team Sarcoma up on the bike tour announcement page. Mom, Dad, Tom and I went to see Dr. K. today. We discussed trials and "the future." Dad confirmed (for the 3rd time) with Dr. K. that biking is good for me. There's no reason for us to think that my symptoms will get worse very fast; I, with high probability, will feel as I do now in 6 months. Radiation of the big one isn't an option because it is too close to the heart. Surgery isn't an option yet; once I have symptoms (e.g., need oxygen or coughing up blood), we would consider surgery. She recommended two phase 1 trials: ET-743 + Doxil and TRM/TRAIL-R1; both are available at Fox Chase in Philly. She mentioned that there might be responses which Dr. Maki would know about that would make Exatecan a reasonable consideration. Her reasoning in prioritization was to consider the trials that we can't do "off protocol" (off protocol is when I can get a drug since it is already FDA approved for some other type of cancer). Two protocols that might make sense to consider off protocol later are Gemcitabine + Doxil and Irinotecan + Temozolamide. She wants me to gather more information (dosage for the "complete response" for Ewing's on ET-743, and anecdotal responses for Exatecan). If we have to wait for these trials, I perhaps could start Gleevec. We found out that I am A-3+. After the appointment, we went out for Vietnamese; Mom and Dad ordered and finished 3 entries!

3/15/03: Juan Carlos came for breakfast. Tom brought his bike in and is on the trainer now; we were hoping to go for a ride outside, but it is too cold for us. It was his first time in clipless pedals, so it was probably a good thing that he had the stability of the trainer to learn to clip and unclip. We went to Phil and Casaundra's for dinner and a movie (XXX). My heel blister healed enough for me to bike with the support; I biked 80 minutes.

3/16/03: Tom and I went for an outdoor bike ride; 70 minutes, 4 laps, 14 miles. We went to a movie with Daniel (DareDevil). Between the ride and the movie, I was very tired... too tired to eat a late lunch.

First Real Bike Ride (Outside) in 2003

I'm not sure when the last time I was outside on my bike, but I think it was in August. There were two main reasons delaying me from riding outside: not being able to unclip from my pedals and the weather. Well, the weather was wonderful today. 55 degrees. Sunny. Very little wind. God, the feeling of freedom. It was so nice. If the weather stays as nice as it was, my trainer will start to collect dust. Tom wanted just to do one lap, you know, break us in slowly. After the first lap, I knew we would do more. Tom asked to be the lead in the second lap. I thought he was just being nice, but he said that he wanted to go slower. (We were practicing our drafting, and the lead sets the pace.) With the Speedplay Frogs, I didn't have any problem clipping out of the pedals. I did have some trouble getting into the pedal, but I could bike without being clipped for a short distance. Tom also liked his first clipped pedal experience. Since I can get in and out of the Frogs, and Tom and I can't get the Frogs off the bike that they are on, I will continue to ride my Cannondale outside. I'm really looking forward to riding my new steel frame with the fancy shifting outside, but it will have to wait until we have time to get Cannondale to a bike store to get the pedals taken off. (Don't let Tommy R. put your pedals on; you'll never get them off.) I recently read the buyer's guide issue of Bicycling Magazine, and didn't lust after any of the bikes pictured. So, I think I might be done with bike purchasing for a while.

3/17/03: I biked 60 minutes (on the trainer) today. I started too late to go outside; my nap ran over.

3/18/03: I registered Tom and I to do volunteer work for Bike New York on May 4; we'll be able to ride in the pre-ride on April 27. We (Mom, Dad, Tom and I) went to MSK to see Dr. M. there. He didn't have any new data, nor much advice about how to make the next decision. Tom and I were joking on the way home about it "So, Dr. M, what should I do?" "I don't know." "Would this be a good thing to do?" "I don't know." It was a bit disrespectful, but helped get rid of some of the frustration that we felt. Tom and I biked outside for 65 minutes. Juan Carlos came over for pizza and a movie (The Bourne Identity) and we heard about his Bourne-like adventures.

3/19/03: I tried to handle some of the insurance forms that I was behind on. What a pain. I got email from Dr. K, saying that she made the call to see if we can get ET-743 for compassionate use; I don't know when we'll find out the answer. I spent a lot of the day catching up on email. I biked for 60 minutes.

3/20/03: Dad, Mom, and I met with Dr. von Mehren, a medical oncologist at Fox Chase. We spoke about many options, and none seemed better than the ones that we went there considering. We found out about the ET-743 + Doxil trial. The ET-743 + Docetaxel trial is being reworked. The research person for the TRM/TRAIL trial wasn't around, so we weren't able to find out about this trial. But, since this is the first phase 1 of TRM/TRAIL and the nth phase one of ET-743, it seems that the ET-743 + Doxil is a better bet. I signed the consent form for this trial; it will start for me on April 17. Luckily, this is after the bike tour in LA. I got an email from Dr. K, saying that J&J does not have a compassionate use program for ET-743 at this time. If you haven't followed any of the ET-743 links, then you probably don't know that ET-743 comes from sea squirt toxin. I biked 50 minutes it the morning.

ET-743/Ecteinascidin/Yondelis + Doxil Trial

We met with the sarcoma medical oncologist and her fellow at Fox Chase on 3/20/03. We found out the following:

  • I probably can get on the trial! I need some tests done (liver enzymes) to confirm, but previous blood work makes it look good.
  • Fox Chase has had at least 6 patients on the trial. 3 of these have been sarcomas not responsive to the standard treatments; 2 of these became stable on trial, and 1 had improvement. (They have received 6, 4, and 2 cycles.) They are currently on the 2nd cohort of patients in the trial; they have received 600 micrograms/m^2 of ET-743, and 30 mg/m^2 of Doxil. I will be on the 3rd cohort and will receive 750 micrograms/m^2 of ET-743, and 30 mg/m^2 of Doxil. This will take 1 hour to receive the Doxil and 3 hours to receive the ET-743.
  • The length of the cycle is 21 days. So, I will receive chemo every 21 days. I can go for 12-18 months as long as I stay stable or improve. The plan is the same as before: 2 cycles, and a scan to see if there is disease progression.
  • We plan for me to start chemo on April 17. Due to the blood work that has to be collected, I have to be in-patient for the first cycle. And, I will need blood work done on the day after chemo, and the day after that. I also need blood work on the 8th day after the chemo for the first 3 cycles. So, I will have to go to Philly quite a bit in the next few months.
  • The most likely side effects from the ET-743 are fatigue, kidney functions changes, elevated liver enzymes, and low white blood counts. The most likely side effects from the Doxil are vomiting/nausea, fatigue, elevated liver enzymes, low white blood counts, and mouth sores. I'll probably keep my hair. To reduce the chance of liver problems, I will take a steroid (dexamethasone) before and after the chemo. (Some of the drug-related deaths on previous phase 1 ET-743 trials were due to these liver problems.)
  • I will need baseline tests; ECHO, chest CT scan, and bloods.
  • I'll need a port installed.
  • The doctor wants me to have a brain MRI, an eye doctor appointment, and an x-ray of my hip.

3/21/03: Lisa come over for lunch and dinner. We baked some cookies. Crystal from girlbike suggested that I try switch-side breathing to help with the shortness of breath problems when cycling.

3/22/03: We went to Wee Teck's for lunch, and saw Susanne and Phil, Mimi, and their kids. We went for a ride around Liberty State Park; I got a flat on the 4th lap; I biked 55 minutes / 12 miles.

3/23/03: We did our first semi-serious training ride. 23 miles / 115 minutes. My legs didn't bother me at all, but my lower back is cramping.

3/24/03: I spent a number of hours yesterday, sending email to old friends catching them up on things. I'm reaping the benefits today by getting lots of emails. I biked 55 minutes.

3/25/03: Susanne came for breakfast. Kit, a friend from Bell Labs, visited today. I biked 55 minutes.

3/26/03: I was just interviewed by a reporter for the Advocate, the daily newspaper in Baton Rouge, LA. They print an article on the bike tour on 4/4 (next Friday).

3/27/03: I had a doctor's appointment with Dr. W today; a follow-up appointment. I had a PFT; my lung volume is almost back to where it was before the inhalation chemo. My diffusion (the ability of the lungs to pull oxygen out of the air) is down 10% (from 124% to 113%). She's not worried about this since my numbers are still "super" and I have 99-100% oxygen saturation when exercising (which is measured in another part of the PFT). We also learned that even though the biggest tumor is right by the heart, it will probably grow into the lung and not the heart since the heart is a hard muscle, and the lung is soft. I am to call her once a month to tell her how I'm doing. Mom was there for the appointment; afterwards, I came home with her. We went by the bike store and they took the Frog pedals off my "outside bike." I put them on the new bike, and Mom, Dad and I went for a ride on the Rails-to-Trails paved trail. This was the first time I rode the blue/green bike outside that Tom bought me for my birthday in November. It was great! (But, I'm not sure that I noticed the difference between the steel frame and the aluminum one that I took the pedals from which has been my outside bike for 3+ years.) I rode for 75 minutes; 16 miles.

3/28/03: I'm still at the folk's today. The folks and I went to a couple of bike stores, buying little things needed for the Louisiana bike tour (e.g., matching jerseys, handle bar bags). Mom and I found an ophthalmologist to see me before my first cycle on the new trial. I biked for 75 minutes; 16 miles, again on the Rails-to-Trails paved trail.

3/29/03: Tom and I did our second semi-serious training ride. 21 miles / 100 minutes. It was very windy.

3/30/03: We were lucky enough today to have both breakfast and dinner with Juan Carlos. He locked his keys in his car, and came by around dinner time for our set of his apartment keys. He bought Tom and I out for dinner. I started to move my files away from my Bell Labs account. Since I have over 20 GB, this might take a while.

3/31/03: I had an appointment with the doctor who will install my new port. The fact that I didn't have the surgery already scheduled is causing me some stress; I have had surgery nightmares. In one of them, I wait 2 hours to see the doctor. While I'm waiting, he frequently walks by the waiting room. When he finally sees me, he says that he doesn't have time to install the port within the next month, but could get to it after that. Since I am receiving chemo sooner than that, I ask him for suggestions. He calls his nurse in to hear my story. After hearing it, she calls someone else in. Soon, the office is filled with medical staff who seem to find my situation entertaining. The port installation surgery is scheduled for April 15. He'll put the new port on the right side so that I will have matching scars. I biked indoors for 55 minutes; I was on a bike which I had at the folks for riding there. It just wasn't comfortable, even though it is the same saddle, etc. as the others which I have been riding more recently.

4/1/03: This week's feature of is about me. Susanne and Saim from the Rotary club came over for dinner and a "task force meeting"; Saim will approach some drug companies for sponsorship. We drafted a letter for it.

4/2/03: It's been one of those frustrating days... fighting with the insurance company, finding out that I need 4 referrals for tomorrow's appointments, finding out that my PCP doesn't want to give me referrals anymore since he hasn't seen me in so long, ... Plus, since my short-term disability is running out on April 14, Bruce and Wee Teck dropped off the boxes from my office at Bell Labs. I'm finding leaving that job very sad; for a number of years, it was my dream job. On the good side, a friend from my high school days contacted me; it was the first time we spoke in over 15 years. He found out about my health by looking for an unrelated thing on the web. And, I was contacted by a reporter from the Journal News, the Westchester daily newspaper; they want to do an article about the bike tours.

4/3/02: I had a day of tests at Fox Chase planned. Mom brought me. The appointments in Philly went well, but it was a long day; we left at 6:10 and got home at 4:45. I don't have brain mets!!! (Nothing showed up on the brain MRI.) And, my blood work was "the best that I have seen." [Quote from the study coordinator.] The hip x-ray was also okay. I biked 55 minutes.

4/4/03: A year ago today was my incisional biopsy of the mass behind my knee. What a year this has been! I had an ophthalmologist appointment today; Kit brought me. He didn't find anything wrong, and wants me to see a neuro-ophthalmologist; the only idea he put forward was migraine spasms to explain the circles of brilliant light that I have been seeing off and on for 4 weeks. Tom and I have been tracking the location of our bike boxes every morning since we dropped them off. They went from Jersey City to Secaucus to Jackson, MS. The article was published in the Baton Rouge newspaper. I spoke with a reporter from an NYU paper this afternoon. Plus, I found out that we will be interviewed on TV during the Louisiana bike ride.

4/5/03: I am leaving for Louisiana first thing this am. The bike tour won't start until Thursday morning, but I'm going down early to see old friends. The folks are also going down this morning. The folks and I met up in Dallas, and flew to Baton Rouge, LA together. I had some swelling problems in the bad leg. We went to visit a Catholic sister who heals by placing her hands on one and prays. Mr. Becnal prepared a wonderful dinner. My friend Butch who lost his wife, Patsy, to Ewing's sarcoma 3 months ago made the trip from New Orleans and stayed for a number of hours. He showed us pictures of Patsy and their kids.

4/6/03: I unpacked my bike from its box; it made the journey safely. We picked up the bikes for John L. and Mom from Scott, a high school friend of Bruce's. Ms. Freda has an open house for us today; 60+ people showed up. It was wonderful seeing all of them. Extra special was the Legnons, a family that I started to baby-sit for when I was 11 years old. An old friend from high school, Johnny, came, and he bought me to his folk's home to see his family on his motorcycle. (I thought that I would find the motorcycle ride more fun, but it really made me want to be on my bike more.)

4/7/03: We are running some errands today: buying spare tubes, pack towels, a spare pair of SPD cleats for Tom. And, we'll be going to the Mateses for dinner.

4/8/03: An article is in the Daily Advertiser, the Lafayette paper about me and the bike tours. Part of me is a bit frustrated with the number of inconsistencies that both of the published articles have had; it makes one wonder if most articles have the same number of incorrect facts. But, it is a very nice article. Hopefully, some of my old high school friends will contact me to say hi. It rained all day yesterday so we didn't get any biking in.

4/9/03: Mom, Dad and I got in another training ride. We then picked up Tom at airport and went to see the sister again. Then, we picked up Rich. After spending some time putting Rich's bike together, we found out the hard way that it was damaged in shipping. Greg L. saved the day by loaning us one of his bikes.

4/10/03-4/13/03: We road in the Cycle Zydeco bike tour; our tour log is here. Two more newspaper articles were published; see them on our Press/Media page.

4/15/03: We got home late last night. It was difficult getting up at 5 to be at the hospital for 6:30am. I am the proud owner of a new port-a-cath. My surgery was delayed 3 hours delay to an emergency liver transplant. I asked not to receive the drug that makes you forget the surgery, so I remember the conversation of the doctors ("Now I remember why I stopped drinking caffeine before going into the OR; do you see my hands shake?") and the sensations of the surgery (pulling of the skin, cramping of the chest). I seem to have picked up a cold in Louisiana; I have a 101 degree fever. Hopefully, it won't effect my ability to have chemo on Thursday.

4/16/03: We got my CT scan results; the biggest tumor is now 9.6 x 5.6 cm. Plus, I might have pneumonia; they won't give me chemo tomorrow since it seems like I have an active infection. Don't they realize that I really really need the chemo?!? The big lung met is now bigger than the primary tumor was! My fever is up and down. No biking for me today; my right arm is still too sore from the surgery yesterday. I will see Dr. K tomorrow morning, but will start an antibiotic this evening. Chemo is currently rescheduled for April 24, 2003, assuming that I respond well to the antibiotic. The doctor who installed the port yesterday called me to discuss the CT results. He said that I continue to impress him with my health for the state of disease I have.

4/17/03: Kit bought me to see Dr K. She doesn't think I have pneumonia, but wants me to continue to take the antibiotic for 6 more days. She still thinks that the ET-743+Doxil is the best bet for me now. But, if that doesn't work, she thinks we might try something in the Topotecan family. Tom wants me to stay off the bike for another day, which I will do. I have some nice bruising from the port installation; the doctor commented that I had very dense (young, healthy) tissue, and it made it a bit difficult.

4/18/03: Kit stayed with me during the morning. By the early afternoon, I felt like my eyes were popping out. But, laying down for a while helped. I found out that I have been approved for long term disability, so Tom and I have one less thing to worry about. I assume I'm not a Lucent employee anymore. Cliff, Wee Teck, and Ms Yan came over for dinner; it was a quick one since Cliff had to catch a flight at 7pm. We had stuffed pork chops and boudin which we brought back from Louisiana. Yum. I cut some of the daffodils from the back yard and brought them into the house.

4/19/03: I had a small panic attack with breathing when I woke up. It felt like I couldn't get enough air in. Hopefully, the gunk in the lungs will clear up more soon. Daniel, Tom and I played in the garden, clearing out the old growth, preparing for planting of flowers. We also had dinner and watched a movie (Maid in Manhattan). I put together Tom's and my bikes to verify that they made the journey safely.

4/20/03: We went to the folks. Tom and I colored Easter eggs with Isabel. Dad gave me the new laptop which he is loaning me until I buy my own; a less than 2.5 lb Dell. Very cute.

4/21/03: Tom stayed home from work today; he might be coming down with the cold that I have. Dr K called this am to see how I was doing. Juan Carlos came by for a visit. I biked for 40 minutes on my trainer (first ride since the LA bike tour); I coughed a lot during it.

4/22/03: Tom is staying home again today; he's now coughing some. I continue to cough. Dad found out that due to our successful fund raising for the Danish Bike Tour, we'll be given Gold Sponsorship opportunities, which one of the benefits is tickets to the Sarcoma Foundation of America's gala on June 22, 2003... a fancy dinner with famous people. I biked 45 minutes; I was coughing so much that Tom asked me to stop biking.

4/23/03: Tom is well enough to go into work today. But, Dad is now pretty sick. So, Tom will be bringing me to the hospital tomorrow. I'm still feeling under the weather a bit. Susanne came to breakfast. No biking due to not wanting to start the coughing in the evening.

4/24/03: Tom and I are off to Fox Chase. The first cycle of chemo is done in-patient; I should be released in the late afternoon on Friday. Anybody want to visit? Tom and I are packing card games and Star Trek DVDs to keep us busy. We heard that there is no exercise bike or rec room at this hospital. Spoiled, aren't we? I had 12 tubes worth of blood drawn for PK studies, and a few that were drawn for blood work.

First chemo on the ET-743+Doxil trial (4/24/03)

Tom and I left the house at 6:10; we made it to Fox Chase at 8 on the dot. I went in and went through the admitting process while Tom parked the car. I had to repeat one base-line test on my way to my room (the EKG). Then, the resident wanted to give me a physical and check out my lungs and belly (I have been having belly pain for 5 days or so). There was nothing in the exam that would cause a delay, so she had the nurses access my port (for receiving chemo) and start a line at the elbow for my very frequent PK (pharmacokinetic sampling to see how much of the drugs are in my system) blood draws. A CBC and some other blood work was taken; chemo wouldn't start until we reconfirmed that the liver function was good and that my WBC were okay. It took over 45 minutes for the blood work to come back.

In earlier Phase 1 trials for ET-743, there were liver related deaths. They have since found that by pre-treating with a steroid, the liver problems don't happen. So, I had to receive some IV steroids. And, then wait a bit. Finally, at 12:30 or so, they started the Doxil. Now, 10% of the people who receive Doxil are hyper-sensitive to the fat bubbles that the doxorubicin is wrapped in. I was one of those 10%; within the first 90 seconds, I had severe abdominal cramping, problems breathing, chest tightness, problems breathing, increased coughing, problems breathing, dry heaves, problems breathing, and a flushed face. The nurses who were observing me immediately stopped the infusion, and attempted to withdraw the drug from my vein. It took 5 minutes or so for the reaction to calm down. The doctor was called in, and a few other nurses came to the room to see if they could help. I was rather popular! The doctor ordered more pre-meds, giving me Bendyrl (50 mgs) and Tagament (300 mgs). This took another hour to infuse. We also started the Doxil at a slower rate. I didn't have problems with the second time it was started.

At 4:30, I was finished with my Doxil, and they started the ET-743 infusion. The drug is light-sensitive, so they put a brown plastic bag over the bag on the pole. It was a 3-hour infusion.

The doctor and I spoke about what do with the belly pain I have been having. We think it is due to the anti-biotic that I took for the pneumonia (which she is convinced that I have due to the CT chest scans), but my oncologist at Columbia is a big proponent of doing regular CT scans of the pelvic region and abdomen. The trial coordinator told us that if I had a scan, even the day after receiving the drug, and if the scan showed mets that we didn't know about before receiving the drug, I would be kicked off the trial since I would have had disease progression. This seems stupid, and rules of this sort probably contribute to lower trial participation rates than otherwise would be seen. So, the doctor talked with the PI of the trial, and found out that I can get other scans up to 7 days after the first cycle without having my participation in question. Now, we'll get have to see if CT scans can be scheduled that quickly!

A friend from college, Tom, came to visit during his lunch hour.

It was a good thing that Tom's visit was before I was treating with the Bendyrl; that make me very sleepy. Tommy and I played a few hands of Skipbo, but he spent most of the day going for walks around the hospital. We both like Fox Chase; it's isn't as rushed as Columbia, and seems more personal than MSK. Tom ate both my hospital lunch and dinner. For lunch, I had curried chick peas and rice that we brought from home, and, for dinner, I had a Philly cheese steak sandwich that Tom went out and got for me. Some part of the chemo didn't agree with me since after eating dinner, I vomited it up. This was an unexpected event; this isn't a side effect that they have seen yet on this trial. Now, I'm the first person on my cohort (i.e., the first receiving the dosing that I did), so maybe this will be more of a problem. After calling the doctor, the nurse gave me an IV anti-emetic (Zofran, 8 mg). I'm not sure of the reason for that; I didn't have nausea, and I didn't have anything left in my stomach. At least I don't have to worry about the calories from the steak sandwich!

One of the nicest things about this trial is that there are no forced fluids, which there has always been on my in-patients chemos. So, I have been able to move around freely since 8:30pm without having to plug and unplug the pole. The out-patient room on the in-patient floor (where I will be in 3 weeks receiving my 2nd cycle of chemo) has a nice library of DVDs and VHS tapes. Tom and I watched a movie before settling in for the night (Overboard). We went for a walk on 4/25/03 around the hospital area. There is a wonderful courtyard.

4/25/03: I have been up for a number of hours (it's 7am, and I never sleep well in hospitals), and I'm wondering where Tom is. He had a number of choices on where to sleep; there is an out-patient chemo room with chemo chairs, a family lounge with a few couches, and two chairs in my room. I know that he started the night in my room. He just showed up at 7:30; he slept in the family room.

We went for a walk around the hospital; it's quite nice. I'm still flushed from yesterday. We were told that I can't eat grapefruit for the entire time that I am on this trial, but they then corrected it to the first 72 hours after receiving chemo. My last PK was at 7:22pm; Tom and I were on the road quickly after that, making it home for 9:45.

4/26/03: I went into Columbia for more CT scans in the am, and then back to Fox Chase for PK blood work at 7:22pm again. Dad brought me to Fox Chase; it was nice to have the ride to visit with him. We left at 4:30 and got back at 10pm. Wee Teck and Ms Yan dropped by for a quick visit and gave us some wonderful Asian pears.

4/27/03: Tom and I were going to go on a training ride for Bike New York today, but we feel a bit wiped out. My cough is less, but still bothering me. Tom and Juan Carlos went to hit golf balls, giving me some time to go thru the trial paperwork that I have received and update my calendar on when I need the numerous blood tests done. We went on a 70 minute ride around Liberty State Park; lots of people out enjoying the pretty day.

4/28/03: I had local blood work done today. I thought I was told that the side effects for this trial would be lighter than standard chemo (e.g., I won't lose my hair), but I feel pretty much the same as I did in the past a few days after receiving chemo (tired, painful belly, difficulty thinking). The Saturday CT scans were unremarkable!! Juan Carlos brought me to BJs for me to stock up on Crystal Light; I seem to be able to drink it when water tastes funny.

4/29/03: I mostly napped the day away. Tom and I went for a 70 minute outdoor bike ride; it was a low-energy ride. My ability to detect water temperature is off; everything tastes warm.

May 2003

4/30/03: My advisor from HP Labs, John, will be visiting for a few days. He arrives today. Still napping a lot.

5/1/03: John brought me to Philly for a PK blood draw. Pictures. I was running a temp, which they told me to keep an eye on. I biked indoors for 55 minutes; it felt okay.

5/2/03: John and I went Branch Brook Park in Newark to see the cherry blossoms. They have over 2000 trees, with hundreds in bloom. Very pretty. I biked indoors for 50 minutes.

May 2003

5/3/03: Tom, John and I went for a ride around Liberty State park this am. It was quite windy, and a bit chilly. We stopped often for pictures, so even tho our ride was over an hour, we biked just a bit over 10 miles. John is on his way home today. Pictures.

5/4/05: Tom and I worked the juice station at one of the rest stops of the 5 Boro Bike Tour. We poured juice from bottles into cups, and iced the bottles. Since we were looking down so much, we didn't get to see the bikes going by. Mom spent the night with us.

5/5/03: Mom and I bought vegetables and flowers; flowers for the back yard and vegetables for the stoop. I think my stoop gets a lot more light than the backyard. I biked for 50 minutes.

5/6/03: Mom left this morning. I biked for 50 minutes.

5/7/03: My hair is now 1 and 3/4 inches long. It was a nap-full day. Juan Carlos came to dinner (salad with chicken, beer bread and ice cream). Tom and I biked outdoors; 60 minutes, 14 miles. Wonderful weather.

5/8/03: Another nap-full day. Susanne came to breakfast, and then dropped me off at the lab to get blood work done. I took the Path home, and walked home from the Path station. I took 3-4 breaks in the walk home; it wasn't as bad as I thought it would be. Mark and Sharon came over for dinner (home-made pizza).

5/9/03: I biked 50 minutes.

5/11/03: We went to Tom's mom's on Long Island for the weekend. Yesterday, while Tom cleaned the inside of the car, I cleaned our bikes. We went, with Tom's mom, to two plant sales and a garden center. We went for an hour-long ride. Joe, Bethany, and baby Joe showed up; we haven't seen them since Christmas time. Today, we left after breakfast, and dropped by Bruce and Sarah's. I worked on Bruce's bike for a couple of hours; his shifting cables were very loose. Tom painted a bit while I did the bike maintenance. Juan Carlos made us dinner today; very nice.

5/12/03: I don't have many bad days, but today was one of them. I didn't sleep well the night before. Every time I coughed or breathed deeply, it seemed like I felt my biggest tumor. My chest felt heavy and a bit tight. I didn't feel so bad physically, but having the sensation of "feeling the tumor" wasn't good mentally. I biked 55 minutes. Wee Teck and Ms Yan came to dinner.

5/13/03: I started to work on the web pages for the virtual bike tours. This is an idea of Dad's for the friends/family who can't go to Denmark to ride with us in July; they would ride locally. So far, Dad has found coordinators in 4 countries to help with the organization and recruiting of cyclists. I feel much better today (than yesterday); no tumor pressure. I biked 50 minutes.

5/14/03: My support meeting was this evening, so I went into Manhattan a bit early, and visited Alan at NYU. He and I visited Anina, who recently had surgery on her wrist. My meeting was good; a couple of newbies who were still early in the chemo process and feeling good about where they were. There's talk of making the support meetings twice a month. Mom came over at 9:30pm; she will bring me for chemo tomorrow.

5/15/03: I got my 2nd cycle of ET-743 + Doxil today. Mom and I got there at 8am, and we left at 6:15pm. I didn't have any hyper-sensitive reactions with the Doxil. I dozed for an hour or so, probably due to the pre-meds. I didn't get any anti-emetic (i.e., anti-vomiting) drugs, but I should have. Thank god Mom carries a large coffee can in her car. The doctor didn't say anything about the sensations that I have been having. She wants me to inform her if I have blood in my cough, or if the sensations turn into pain. Another one of my Ewing's sarcoma email list friends died today. Very sad.

5/16/03: So far, I feel pretty good for the day after chemo. One of the side effects of the Doxil is palmar-plantar erythrodysesthesia (skin irritation). I had some symptoms of this last cycle, so the nurses asked me to be a bit more careful this cycle. So, no biking for a couple of days since I'm not supposed to "engage in excessive physical activity" or wear tight clothing.

5/17/03: Daniel, Wee Teck, and Ms Yan went with Tom and I to Liberty State Park; we planted flowers in a large raised bed by the playground. We also saw the new Matrix movie; Tom and I were disappointed, but Wee Teck liked the fighting.

5/18/03: It's Mom's birthday today. I'm still feeling chemo-weird, but not having problems drinking water like I was last cycle. I am flushed in the morning; not sure what that is from. Jon is visiting for a week; he took Tom and I and Kit and John out for a Greek dinner. Very nice.

5/19/03: Susanne came for breakfast, and then dropped me off at the lab to get my blood work done. Tom and I went for an hour-long outside ride when he got home from work.

5/20/03: I napped today. Basically all day. It was kind of a scary day; the pressure and pain when breathing was bad. It's not that it hurts a lot, it's more that it hurts at all. I biked 45 minutes. Juan Carlos came over for dinner.

5/21/03: Finally, my belly is starting to feel a bit better. Phil and Casaundra came to have dinner with Jon and Tom and me (kibbi). I biked 45 minutes.

5/22/03: My belly is back to normal. Next cycle, I just have to remember that it will be 6-7 days of feeling poorly and then I'll be better. I even feel more perky. But, the stinging is still happening when I breath just a bit deeply. Mom brought me in for my PK and I saw the doctor. Based on my description of the sensation and pain, she thought that I might have a collapsed lung. She ordered a chest x-ray, which, unfortunately, showed no obvious reason for the symptoms: no collapsed lung, no fluid, no pneumonia. (Unfortunate since it would be nice to have a reason on why I have pain breathing. If we don't know why, then we don't know what to expect.) Due to the location of the big tumor, we couldn't even really see if it had grown or not (since it is behind the heart). So, we'll just have to wait until June 2 to see how I'm doing. She did say that, if the pain gets worse, she might want to move up the chest CT.

Mom and I both wore our Team Sarcoma t-shirts. (Dad and Mom are wearing them in this picture.) 6 different people approached us, wanting to read our shirts, asking us where we got them from. Due to the shirts, we even met a woman who had Ewing's. (Remember I have been in treatment for over a year. This is the first time that I have met someone with Ewing's!) Mom also used the people approaching us as an opportunity to tell them about the virtual bike tours. So, I think some of the posters will be hung up around Fox Chase soon.

May 2003

5/23/03: Tom and I drove to the Boston area for the long weekend. We saw Liz and her kids, and Neal briefly. Tom was really impressed with the Chicken Dance Elmo and Henry's large collection of Thomas the Tank trains. Pictures. We went to Rich's and, while I napped, Rich and Tom went food shopping so that Rich was able to make our favorite Rich-Liddy meal: enchiladas.

5/24/03: Due to the weather forecast, we canceled our original plan of biking to Danvers to see Len and Inga. Instead, we went for an hour bike ride (with 20 minutes of it being in the rain) around Waltham, and then went into Cambridge to see Chris and Carol and the kids. At parting, Chris mentioned to me that he read my web page every day, which was nice for him to say. After an hour visit, we drove to Len and Inga's home. Tom taught Inga (and Rich) how to do headstands. We also watched their wedding video.

May 2003

5/25/03: We biked to Boston (20 miles; 2 hours) this morning. I felt more burning in my lungs than I used to, but it felt like I had just ran a sprint, so it was somewhat easy to not worry about. I did okay on the hills, but it made me quite out of breath. Tom wanted to see Harvard Square. On the way back, I was making a turn too fast and I wiped out. Rich was rather close, so he fell also. Neither of us nor our bikes were hurt. Friends from my email list, Hana and Matt, came over at 3pm and stayed until after midnight. We visited, play a game of Castle Risk, and ate dinner (pasta).

May 2003

5/26/03: Too rainy to go biking so we did some shopping, and then left to drive home. We bought Tom a new bike helmet to replace the one that got damaged when we shipped the bikes back from Louisiana. No biking today.

5/27/03: I'm having less pain in breathing today than last week, so maybe this chest tightness is a side effect of the chemo that they don't know about yet. I prefer thinking that it might be that then the cancer growing. Juan Carlos came to dinner (bean soup). I biked 50 minutes.

5/28/03: The checks have finally been sent in for Cycle Zydeco; we raised $13,500! I had a nice conversation with my friend Dina. I hadn't heard from her in a while (no responses to my emails) and was a bit worried. Now that I have a number of friends in treatment for cancer who aren't responding to treatment as well as they should, I start to worry when I don't hear from one of them for a few weeks/months. I biked 50 minutes.

5/29/03: I spent the morning looking for new trials out there that I should consider in the news on June 2 (when I get my scans) isn't good. I found out that the TRM/TRAIL trial at Fox Chase probably won't have an opening until Sept. Tom and I went to a talk on cancer vaccines at Gilda's. Two German doctors talked about primed and unprimed cancer vaccines made of dentritic cells. Not many results yet for sarcomas yet, nor any understanding on why the vaccines work for some and not others. No nap; no time. I biked 45 minutes.

5/30/03: I got blisters on my feet from all of the walking that I did yesterday (I had to have blood work and I went to Gilda's). It really bothers me that I can't tell anymore when I'm getting blisters on my feet. I should still be able to tell on the good foot, but it seems to suffer from sympathic numbness. The roofers came. They made lots of noise so I didn't get a nap in. Michelle came for lunch (Greek pitas). I found some of papers that have been written about dentritic cell vaccines... worthy to try for prostate or breast cancer, but I didn't see anything that made me a believer for sarcoma. Daniel came for dinner (gumbo from a box and salad) and a movie (The Truth about Charlie). No biking.

5/31/03: Chia-ling from SF arrived early this am. We had planned to go for a bike ride in Westchester along the rails-to-trails path, but fatigue (of Tom) and a slight fever (of mine) changed our plans. We also missed the wedding of friends (also in Westchester). Instead, we went for a local bike ride (80 minutes), and some errand-running. We ate stuffed pork chops for dinner, and watched a movie (Changing Lines).

6/1/03: We went with Wee Teck and Ms Yan for dim sum in China Town. After a nap, Chia-ling and I went to the Mikasa store and planted a few more flowers in the back yard. It was wonderful that Chia-ling spent the weekend with us; if we didn't have a visitor, Tom and I would have been worrying abut the scan tomorrow.

6/2/03: Tom dropped Chia-ling off at the airport at 5:45 am. I had my CT scans today and we got some very preliminary reads on them. Still no mets in the abdomen or pelvic area. The masses in the lungs have grown, but we don't know by how much. When Mom and I look at the scans, it doesn't seem like that much, but, hey, what do we know? (The 3 tumors that I can identify look fatter, but not longer. Since they use the largest measurement to decide if I can stay on the trial, this is promising.) So, we'll find out on Thursday when we go to Fox Chase if I can continue with the trial. Mom, Tom and I went on an hour bike ride around Liberty State Park.

6/3/03: Mom spent last night with us. This morning, Mom and I visited for a bit, and went on a 50 minute bike ride. Juan Carlos suggested that I get fake scans printed up so that I can stay on the trial... it's an idea. We got the results of the CT scans; some of my lymph nodes are enlarged (i.e., they probably have tumors in them). The biggest tumor is 12x6.5cm, which is only an increase of 1 cm in length from the scan taken two days after the first cycle. But, of the many little growths, the majority of them have significantly increased in size. Plus, I probably have a pleural tumor, which is the lining of the lungs. I spoke with my oncologist at Columbia and she said that I had "disease progression" and that we should try something new. We discussed a protocol that was just presented at ASCO this past weekend: irinotecan and temozolomide. The Phase 1 schedule was a 28 day cycle, with receiving the irinotecan for 10 days (by IV) and the temozolomide (orally) for 5 days. She thinks we can begin on Monday. I'm waiting to talk to my oncologist at Fox Chase to see what she suggests.

6/4/03: Tom and I didn't sleep very well last night. I spoke with the Fox Chase oncologist; she thinks that the irinotecan and temozolomide is a very reasonable choice. I also spoke with one of the doctors responsible for the irinotecan and temozolomide trial; she said some very positive things about it (e.g., the COG [Children's Oncology Group] is planning on having this as the choice for treatment for relapsed Ewing's). She suggested that I have a 3 week cycle instead of a 4, and mentioned that all of the trial patients were able to get the IV drug at home... that would be nice. I am not looking forward to visiting the hospital 10 days in 2 weeks. Mom and Dad spoke with the ped oncologist at MSK who is the Ewing's expert there, and he said that he wouldn't recommend a trial that he has open for Ewing's using irinotecan and carboplatin; they haven't had good responses on Ewing's with it. He said that he thought our planned treatment would be a good choice. Juan Carlos came by for a quick visit. I biked 50 minutes.

6/5/03: Dr. K doesn't want to go over the details of the new protocol on the phone, so I will be having an office visit with her tomorrow. I made a call to Dana Farber in Boston to see what they have to offer me for trials; they might have some openings for Phase 1 trials in 2-3 months, which will be around the time that we'll find out if I am responding to the planned next step. I biked 50 minutes.

6/6/03: Chemo will start on Monday (6/9/03). The second cycle will be delayed due the trip to Denmark. The "normal" cycle will be two weeks receiving chemo and one week of rest; this will give us a 21-day cycle. (Part of the theory behind the dosing/frequency is giving a small dose more frequently gives the cancer cells less time to recover.) So, for the first cycle, I will have to go to the out-patient clinic every weekday for 2 weeks. (I might be able to get the 2nd cycle at home on a pump.) It should take about 2 hours for me to receive the premeds and the chemo. One of the drugs is taken orally; I'll take the pills while at the out-patient clinic. The side effects mentioned by Dr. K are lowered counts (neutropenia, anemia, low platelets), diarrhea, and constipation. I'll need weekly blood work performed. One of the drugs causes hair loss, but probably not at the low dose that I will be receiving it at. (Disappointing: I was hoping to try again with new hair. Perhaps if I lose it enough times, it will come back brown with red high-lights, which is the color I have always wanted.) Dad posted a new update on Liddy. I also spoke with Dr. K about my chest pain/chest pressure. I was worried that it might represent something new, but it is probably the lymph nodes or referred pain from the big lung mass. It was a relief for me to have her ask, when I was describing the pain, "When you bend over, you feel..., right?" because bending over hurts more. Currently, I am most comfortable laying down.
John is here for a quick visit. Tom, John and I went for an hour bike ride when we got back from the doctor's. Then John brought us out for dinner at a local Italian restaurant.

6/7/03: We ate breakfast with John, visited for a short while, and then he went on his way. He planned to spend a few hours at the MET before catching his flight to go home. We celebrated the May birthdays (Matt, Bruce, Mom and Grandma) at the folks with a nice lunch. Tom and I stayed on while others left. Dad, Mom, Tom and I discussed my living will since they are all my health care proxies. Crank Brothers donated a pair of Egg Beater pedals to me for the charity rides; I finally tried them out. They weren't easy for me to use, but I have to try a number of additional times before giving up on them.

6/8/03: Tom and I worked the registration desk at the GWB Challenge, a walk/run/bike tour to raise money for the American Cancer Society. Our friend Lisa was going to volunteer with us, but she isn't feeling well. We had a nice nap when we got home (since we got up at 5:10am for our volunteering). Afterwards, Tom started a house project, and I lazed around a bit. We went for a 70 minute bike ride; lots of wind.

6/9/03: One of the women who lives in my building drives right by Columbia each morning around 7. So, I caught a ride in with her. I was an hour early, but I can reply to email there ("offline") just as well as at home. The chemo was fine. It took 3 hours instead of 2. I'm a bit tired, but that's probably from getting up extra early.

6/10/03: Today, chemo took less than 2 hours. Some of the shortened time is due to the fact that they left the needle in the port so the nurse (Coco) didn't have to re-access my port. Mom picked me up after chemo and brought me to her house were I slept for 3 hours. Dad, Mom, and I went on a bike ride on the rails-to-trials path; Karen and Lukas joined us. Dinner was pasta; very nice. Dad and I have been working on getting more cyclists for the virtual bike tours. We currently have 80 or so participating. If you, the reader, haven't received a personal invite, consider this one. The purpose of the virtual bike tour is to get many people biking on the same days for sarcoma. So, you would bike 10-30 miles on July 1-4, and let others know why you're doing it; we have prepared sarcoma fact sheets and information about young adults in clinical trials to help with this part.

6/11/03: Mom brought me in for chemo this morning, and afterwards, I took the subway to Hoboken, where Susanne met me to bring me home. I thought we would have lunch together, but Susanne ordered me up for a nap. 3.5 hours later, the phone woke me. Tom came home early so that he could drive me into my Gilda's meeting. We had dinner with Juan Carlos (burgers).

6/12/03: Tom drove me in and stayed with me for chemo. Afterwards, he brought me home and then went to work. Mom started the process of changing Tom's and my tickets for Denmark; we went to come home 2 days early so that I can start chemo on July 7. (Else, we might have to wait until July 14.) Tom and I had plans to be in Copenhagen for 3 days with our friend Chia-ling; we're sorry to have to change our plans, but Tom wasn't too happy with delaying the 2nd cycle of chemo anymore. I again took a nap of 2 hours +, awakened only by calls on the phone.

6/13/03: Tom once again drove me in for chemo and stayed. This time, I slept during most of it. Then, we came home (with my holding my coffee can just in case I needed it), and, after a snack, I napped. 3 hours later, I thought I might be able to face the day again, but I was wrong. The nausea stayed with me all day. I biked 45 minutes.

6/14/03: Juan Carlos came for breakfast. My tummy felt almost normal. Tom and I went for a ride around Liberty State Park; the air was thick, and it was windy, but it was still nice to get out. Mike, one of our past tenants, came for a visit. Bruce, Sarah, Miles, and Isabel came by for a visit; we went to one of our local Vietnamese restaurants for dinner.

6/15/03: We went kayaking with Juan Carlos and Daniel. And, then off to a BBQ at Wee Teck's where he gathered many Bell Labs and former Bell Labs friends. We left a bit early due to it being past nap time. I feel so good today; I'm really not looking forward to going in for chemo tomorrow.

6/16/03: Barbara dropped me off a bit early today (6:45am). Chemo was okay. We are trying another med to help with the nausea. Dad picked me up afterwards and brought me to the folks. I had a small snack, and then a nap. Karen dropped Lukas off, and I visited with Mom while she took care of Miles and Isabel. I was a bit concerned about holding Miles since I still have a needle in my port and Miles likes grabbing my port.

6/17/03: Dad dropped me off this morning. Lisa picked me up after chemo; she brought me home. I took a short nap, and Lisa and I visited while a plumber fixed some problems. I needed a second nap.

6/18/03: I biked for 35 minutes in the morning. Tom was going to bring me in today, and I was going to take public transportation home. But, I got sick before going, so Tom stayed with me and brought me home. The nurses/doctor explained why the meds weren't working that well for me anymore. They fill up receptors in your stomach, and after 3-4 days, all of the receptors are full. And, unfortunately, most of the anti-emetics work on the same receptors. Since chemo is normally given daily for 5 days or less, most people don't have this problem. Ilka, a friend from Bell Labs, dropped by for a visit after my nap, and brought two nice desserts. Daniel came over for dinner (Indian) and a movie (Drum Line).

6/19/03: Tom brought me in for chemo, and Liz, a friend from Gilda's, picked me up. She brought me home, and we visited for a few hours; we ate some of the desserts brought by Ilka, and I worked on the earrings and necklace that I will be wearing to the gala dinner on Sunday. Today was the first day that I felt well. One of the suggestions seems to be helping is to have frequent, small meals. Also, the chest pressure has lightened up some. I haven't been biking much, but that is due to the chemo, and not the chest pressure. Kit came over, and will spend the night and bring me in tomorrow. I just noticed that my essay on Cycle Zydeco ride has been posted on Planet Cancer!

6/20/03: Last day of chemo in the first cycle!!! (This has been one long set of 10 days!) Chemo went okay. The exciting part happened once I was done; Kit and I went to get a prescription from Dr K for the chemo pills for next time. She (Dr K) finally got excited about something related to me; I have always been jealous of how her other patients' successes get her excited. She wasn't excited about my test results, but about the web pages that Dad and I have put together on cancer journeys and the virtual bike tour. She said that she wasn't surprised by what my advisor had to say about me, referring to the Washington Square News article, so it was obvious that she read quite a bit of the site.

6/21/03: I didn't take my anti-emetic last night, which was a mistake. I biked for 35 minutes in the am, and got quite nauseous. Girija, Leelu and Malika came for brunch. Wee Teck and Ms Yan dropped by for a quick visit on their way into the city. In the afternoon, Tom and I were on the road to his brother's home. Due to the rain, the drive took much longer than it normally would. Once we got there, we visited with Bethany, Joe, and baby Joe. Tom played blocks with baby Joe.We had a nice dinner and watched a movie (Erin Brockovich).

6/22/03: After breakfast at Joe's, we left for Nick's. We borrowed Nick's tux, and then went onto the folk's. We took some posed pictures of Tom and I on bikes for the press releases. Dad wanted us to bike slowly down a hill in the rain, which wasn't very easy. We then went to the benefit dinner.

6/23/03: A quiet day. Tom and I went biking in the park; the honeysuckles are in bloom, and there's part of our lap where they smell wonderful. There were lots of others training. [See Introspectives Along the Way page 6.]

6/24/03: Susanne came to lunch, and we went for a ride in Liberty State Park. Daniel came to dinner, and we spent some time in the garden. He worked on the raspberries, I weeded, and Tom swept up. We ate dinner (kibbi) and watched a movie (Office Space).

6/25/03: Tom took today off; we went for an hour ride in the park. The heat sapped my strength, but I noticed that I have NO chest pressure or pain. I got blood work done. Plus, I bought Tom's and my tickets for our southwest trip during my week off from chemo in July. John, my HP advisor, is back for a few day visit; while Tom was out golfing with his brother, John and I had a very nice conversation about what it means to be an inspiration. And, he listened to complain about the terms commonly used for cancer treatment ("fight," "battle," etc.) (Some people have recently said that I'm an inspiration due to how I handle my current situation. I'm uncomfortable with that since I'm handling it the only way I know how. It seems to me that to be inspiring, there should be risk like there is for bravery.)

6/26/03: Susanne came for breakfast and a ride. Even tho it was much earlier then the rides of the previous two days, it only felt a bit better due to the heat. Tom and I packed our bikes in our new (donated) CrateWorks bike boxes. It went smoothly. We ate our 3rd dinner in a row of kibbi.

6/27/03: We left for Denmark!!! We were on the same flights as Matt and Karen, and Bruce and Sarah, and the folks. Our flights were okay; I didn't get the foot swelling that I have been when I fly.

6/28/03: The Danish houses remind me of Vermont (very steep roofs) and the trees remind Matt of the shore. It all looked like NY to Isabel. There were lots of wild flowers in bloom.
The cigarette smoke on the streets and in restaurants really bothers me. In fact, I have the chest pressure back. So, maybe it wasn't due to the cancer, but to the coughing.

6/29/03: Tom and I put together our bikes. Luckily, that went smoothly. A busy day of eating and seeing old friends. We had plans for a nice ride in the afternoon, but was rained out. Riding on the hills in Aarhus seems dangerous if you don't know them.

6/30/03: The chest pressure seems to be getting worse; I'm back at the point that I have sensations with every breath. My current theory is that the pain and pressure are due to the coughing; I'm coughing now due to people smoking. It doesn't hurt to cough, but it seems to hurt to breathe afterwards.

7/5/03: We had a few very nice days for biking. And, the routes that we have been biking on have been very beautiful. Rolling hills, wild flowers growing on the side of the roads, bike lanes, and even bike paths which seem miles away from cars. Tom, Unni, Helge, Daniel, and I were able to do a 42 mile ride, which due to the hills, was worth more than the 55 mile ride in Louisiana. They (the hills) make me feel very much like I have one leg and one lung. I'm not sure why the chest pressure is stronger on some days than others. Hopefully, it will go away once I'm back in the states.

7/6/03: After Mass, the Team Sarcoma cyclists started to leave to catch planes, etc. Tom's and my flight wasn't until the afternoon, so we had plenty of time to take apart the bikes, etc. When we got to the airport, Mark's family was still there, so we visited with them. The flights were uneventful with the exception that it was obvious that both Tom and I had head colds.

7/7/03: It's very nice to be home. All of our beds in Denmark where 2 twin beds pushed together, so there was always a "crack" that either Tom or I was sleeping in. Plus, even tho NYC isn't known for it's wonderful air quality, it's wonderful to me! First day of my second cycle of the current regimen. Dr K didn't buy into my theory of the smoke causing the pain. She ordered a chest x-ray to see if I have a collapsed lung, which when compared to the last chest x-ray in April, there was disease progression. She discussed to herself (out loud) that we might as will give another cycle of the regimen to give it time to work, plus, as I pointed out, we don't have anything lined up next. She ordered blood cultures and urine cultures since I had a 101.5 temp. She wanted blood cultures from both a vein and my port, which took some time because the nurse tried getting blood return from the port for over an hour in the am without success. When Tom and I were in the room before they attempted the blood cultures, I cried. It was a mix of being at the hospital too long, hearing about the progression, being tired, and feeling ill. They were able to get blood from the port after injecting an enzyme which destroys blood clots. Jeff, Leanne and Zack came in the evening for a visit of a couple of days.

7/8/03: I got my chemo at home. Fred, who looks more like a plumber than a chemo nurse, showed Tom and I how to do it, just in case Dr K gives her approval for us to give it to me. Seems very easy. I slept most of the day; Tom attempted to put our house back in order. I didn't eat much.

7/9/03: One of the nice things about not having the chest pain for the 2-3 weeks before leaving for Denmark was that it made it so much easier to look forward to the trip. The chemo nurse let Tom and I give me the chemo; Dr K approved that. Even thou I have a meeting tonight, I decided to skip since I still have my head cold, and am still running a low-grade fever. Jeff made us a nice dinner (meatloaf), and then they left. Tom watched Terminator, to prepare for seeing T3 at the movies soon.

7/10/03: Both the Baton Rouge newspaper (the Advocate) and the NY Times (the Westchester edition) ran articles. You know, I frequently don't realize how difficult the day to day living with me is for Tom. He went to work today, but only after he set up my "chemo chair" in the "chemo corner," made the couch into a bed for my endless naps, and divided my day's pills into the ones that I take an hour before chemo, the ones that I take with chemo, and the ones that I take after chemo. And, then, I made his leaving even more difficult by getting sick. (For those of you who are wondering if we got the nausea and vomiting under control, the answer is no.) We got a copy of the chest x-ray report from Monday; I was hoping that it had the sizes of the masses which had progressed so that I could compare them with the baseline CT chest scan, but it didn't. My ear still hasn't popped from the flight on Sunday; Dr K suggested a couple more meds to try to more that out. She seemed happier with my continued low-grade fevers since Tom is also having them. Hein and Daniela came by for visits. It was very nice to see both of them.

7/11/03: By and large, most of the chest pain/pressure is gone again. The nurse came by and pulled out the port needle. Juan Carlos came by for a quick visit.

7/12/03: Tom and I left bright and early for his mother's. (I still have jet-lag, so I have been up at 4am at the latest on most mornings.) We went to a few garage sales, took at nap, and then he and I spent a couple of hours putting our bikes back together and cleaning them. We then went out for dinner at the local diner, and had an early night.

7/13/03: We went for a 70 minute ride on Long Island; my tires felt a bit heavy. I think I have a couple of slow leaks. We didn't get home from Long Island until 1:30, which was too late to nap and still make the movie (Terminator 3) that we were hoping to see. So, we straightened the house a tiny bit, and went to a dinner celebration. (One of the last papers that I helped with at Bell Labs [in a very small way] won the "best paper" award at a recent conference; most of the co-authors of the paper came to the dinner.) I was coughing quite a bit at dinner; I think there was something in the air in the restaurant that bothered me. I'm not looking forward to chemo tomorrow.

7/14/03: I spent the morning, trying to make a dent in my email backlog. It seemed like I ended up handling very few messages. The nurse came and accessed my port, and I spoke with Dr. K about my previous blood values; they are good enough for chemo, but not the impressive numbers that I had months ago. Recently, I'm starting to think that the 15 months of treatment and reduced exercise is starting to take a toll on my body. A friend from my Bellcore days, Jackie, came to visit with her two kids. And, she brought 7 bags of paperback books! It was wonderful seeing her again, and meeting the kids. I gave myself my chemo at 2, and was down for a nap by 3:15. I woke up at 9:30 when Tom was washing his dinner dishes. I read some in bed, going to sleep at midnight.

7/15/03: I weeded the garden for 45 minutes this morning. No tummy problems, so maybe it is the temozolomide that causes more of the nausea and vomiting (I only have to take the ironotecan this week). I harvested 4 cups of raspberries from the backyard.

7/16/03: Mom and Dad came and spent the morning and early afternoon with me. We went to the backyard, and harvested basil, blueberries, and more raspberries. Mom and I spent most of the time planning out Tom's, Rich's and my trip from Las Vegas to Alq (we leave tomorrow). We were very luckily to get a night in one of the lodges in the Grand Canyon Village; we'll spend time on the north rim, take a smooth water raft ride on the Colorado, and go to the south rim. I'm really looking forward to the trip. Just looking at the chemo while unpacking it from the UPS box starting the nausea. Dad took pictures of me giving myself the chemo.

7/17/03: I'm suffering from what is called "anticipatory nausea"; just thinking about getting the chemo is causing dry heaves. I have meds which will help with this, but they will cause me to sleep even more.

7/18/03: My last day of chemo before our trip to Las Vegas. Daniela and Kit came by to visit, but I wasn't the best of company since all I wanted to do was sleep. Kit dropped Daniela, Tom and me off at the airport.

7/19/03: We're in Las Vegas! We went for a buffet breakfast in our hotel (Circus Circus). I rested while Chia-ling, Rich, and Tom went to the arcade, where they won a stuffed seal and a stuffed rubber mallet. We walked around a number of hotels, and they all looked rather similar. We saw T3 (Wow!). It was a bit too much walking for me, but renting a wheel chair didn't seem like a good option either due to the number of stairs around.

7/20/03: We visited Hoover Dam--very impressive. We also visited more hotels. Tom dropped Chia-ling off at the airport, and he and Rich went swimming in the hotel pool (we are now at the Sahara Hotel). It is 105, and doesn't cool down much in the evenings.

7/21/03: We visited Zion Canyon. I was hoping that we could see Bryce also, but it was mid afternoon by the time we finished Zion. The few "hikes" that we did took much longer than I thought they would. The canyon was very beautiful.

7/22/03: We visited the North Rim of the Grand Canyon. Pictures just don't do it justice. I felt the elevation when walking up inclines, even when having Rich or Tom push me.

7/23/03: We went for a smooth water rafting trip on the Colorado in the morning (Glen Canyon). We then drove to the South Rim of the Grand Canyon. After a nap, we went for a 1.1 mile walk along the rim, mostly on a paved path, which made it much easier for me to walk. My chest pain came back; I feel lots of pressure and some burning.

7/24/03: We walked part of the rim trail and had breakfast overlooking the canyon. Tom did some yoga on the Worship Spot; it was as impressive as one of Rodney Yee's yoga videos. The no-see-ems were eating me too much so we didn't walk for very long. I sent email to my oncologist, asking for an earlier appointment then next Wed.; it now hurts when I lean forward (as it did last time I had the chest pressure). We got on the road and headed towards Albuquerque. We stopped at the Petrified Forest and saw the Painted Desert also, along with some petroglyphs. The drive to Albuquerque seemed endless, but it was only 6 hours or so. We got to Erik's and I-Ching's at 8, and than went out for dinner (New Mex).

7/25/03: We went to the Petroglyph National Monument and took the tram to the crest of Sandia mountain. This was my favorite morning, and worse afternoon. We did 3 short "hikes" on the national monument, and I was pretty good at climbing up because the trail was so steep that I was using my hands to pull me up. Going down was difficult because there were big rocks in the path. The elevation of Sandia was too much for me. I was more out of breath than I have ever been.

7/26/03: We went to a few flea markets in the morning since Tom and I remembered that being the way to see local New Mexican artists. Then, we caught our flight back. Due to my chest pain, the flight was rather uncomfortable. Juan Carlos picked us up at the Newark airport.

7/27/03: We went to Columbia for my CT scans. Since the pain came back, Dr. K wanted a chest CT with contrast, which meant that I had to have blood work done first. I was in quite a bit of pain this am; Tom and I brought my bag of pain killers, and asked Dr K which might help with the pain. She said Ultracet and morphine. After about 2 hours, they did seem to help. I had a fever in the am, which, of course, she isn't very happy about. I was able to have a different oral contrast for the abd CT which didn't bother me too much to consume. Mom came to the hospital, and I shared with her the pictures from our trip.

7/28/03: The morphine is helping with the pain. But, I think it might be the cause to my vomiting yesterday. Dad and I are in research mode again (just in case the news we get tomorrow about the scans isn't good).

7/29/03: Well, the news wasn't good. (Dad's version of the news [he's better than me at this type of stuff] is on the Update on Liddy page.) The big mass grew 25% more. The second-to-biggest shrank quite a bit, and most of the rest remained stable. This is called a mixed reaction. So, we're onto a new regimen; Dr. K felt very comfortable with gemcitabine and docetaxel as the next try. I start on Friday. Another choice which seems equally as good with respect to results is the topotecan, Ifex, and carboplatin trial she has; since this is a 5-day in-patient protocol, she made a quality of life choice. She will look into a few things, with heated chemo being one of them. Plus, she will talk to the radiation department to find out if it is possible to do something to just the big one. While she was on the phone with one of her colleagues, trying to find the right person to contact in the radiation department, she gave a quick case history of me: "36 year old woman with Ewing's and lung mets, doing very well physically, is out hiking in Colorado." It was clear that she didn't know how much I was relying on Rich and Tom to push me up the trials when there was a small slope. She also suggested a morphine patch to help with the nausea that the pills give me. We discussed me playing around with my pain killers until I get some combination of meds that works but doesn't cause me to vomit. Of course, once we reach that point, I will want a combo that doesn't make me sleepy, etc. :)

7/30/03: I still don't have my appetite back. I ate a very small breakfast, and skipped lunch. Tom made a nice dinner (broccoli with garlic, boudin, and cucumber). I sat by the moving truck while Susanne and her friends moved her furniture and books into her new Hoboken apartment. I took a 2.5 hour nap. I biked for the first time in 3+ weeks; 45 minutes to Buffy. I'm feeling a bit achy. Due to a 100.9 temp, I paged the doctor, who wants to repeat blood and urine tests on Friday. If my temp breaks 101, she won't give me chemo on Friday. Julie sent me a "statement" to read to the tumors which Tom will read to my belly and lungs each evening: "Tumors: Consider this your 30 day notice. You are not welcome to continue to stay in Liddy's body. You were never welcome!! We've tried surgery, medication, radiation, foul language and you still haven't got the hint..LEAVE! Liddy isn't going anywhere so that means you have to. So start shrinking away to nothing! Liddy has got a lot of things to do still and carrying you around is quite go on, encapsulate your little selves and shrink away to NOTHING!! You've picked the wrong hostess!!"

7/31/03: I took care of some paperwork, and sorted all of the medical bills that I have to handle soon. I spent a while online, looking for results with Ewing's or sarcoma with the platinums (see here for details); just not much there. Kit visited for most of the afternoon; lucky, she got here after my 2 hour nap. Tom and I biked in the evening; 45 minutes to Buffy. Susanne spent the night; she is between livable apartments.

8/1/03: Tom and I left at 7:20 am and returned at 3; another long day. Before we left the city, we dropped by Sarah's office and got a copy of Harry Potter #5. I started off with blood cultures and urine cultures to see if there is an infection-based reason for the fevers. My oncologist thinks that there won't be, and that I have a "tumor fever"... just part of the disease process. I got my first dose of gemcitabine and docetaxel, and feel relatively good. The amount of infusion time needed for the chemo was 75 minutes for one of the drugs and 60 for the other, so one would think that we would only be there for 2.5 hours, and not the 4 hours that we were there for. Docetaxel is a chemo agent that many (30% +) have an allergic reaction to, so I was pre-medicated with Decadron and Benadryl, which meant that I slept most of the time. In the evening, my fever went up to 101.4, and I paged the doctor's office. Another oncologist called me back, and after asking a few questions, said that I should call again if I get chills, dizzy spells, or other fever-related side effects. I haven't taken a pain pill since before the chemo was given, which I really like. I took a 2.5 hour nap. I biked 45 minutes in the evening to Buffy. Susanne, Tom, and I watched a taped CSI. Susanne spent the night again.

8/2/03: I slept very well. Susanne bought me a water melon; this chemo seems to be one where water and most other liquids don't taste very nice. I didn't take a pain pill until the afternoon, which is when I noticed that it hurt when I shifted positions. Tom went for a bike ride by himself. By the evening, the pain was right back up there where it was before Friday. It seemed to have moved, but that doesn't seem to mean much. I finally finished the picking and choosing of the photos from our Southwest Adventure; they are here if you're interested. We have many more; let me know what you want to see more of. I like people pictures, so my selection is people-picture heavy.

8/3/03: Not one of my better days. Tom and I didn't sleep at all during the night due to the return of the cancer pain. It seemed to take forever for the morphine to start working, and we might have overshot a bit since I had morphine nausea. I was rather loopy. Wee Teck, Ms Yan, and Daniel visited, bring food.

8/4/03: The folks came and spent the day with me; Tom wasn't comfortable with me being by myself. We went thru to the photos people had taken for the Danish bike tour and made the first cut. We probably looked at 800+ photos. I stayed off pain meds most of the day.

8/5/03: I finished Harry Potter #5. I noticed that I have lost 5 lbs since getting back from our Southwest trip... shame we don't know what is causing my lack of appetite; if we did, we could bottle it and make a million. Seems like a low energy day.

August 2003

8/6/03: I was the treasurer of two condo associations where Tom and I own a unit in. I made plans for Tom to drive me to the association meeting last night, with all of the paperwork, etc., just to find that I was a week early for the meeting. This, plus other things, convinced me that I should hand the responsibilities over to someone else for a while. Tom is staying home with me today. I spoke with my onc today; she seemed under whelmed with my 6 lb weight change. I wonder if frequent changes in weight are common in her patients. John and family visited for a few hours. Photos. Juan Carlos visited also.

8/7/03: Tom and I biked for 45 minutes.

8/8/03: Chemo day. We left early to get there early so that we could meet with the doctor. The folks and I had a few more questions to ask her. Probably the biggest was "Should confusion be a symptom of either my meds or the drugs?" The answer was "Why?" When we explained the symptoms (me not being able to parse questions too well, me not knowing how to complete everyday tasks), she decided to order either a brain MRI or CT scan. (It will be a MRI, and it will be on Monday.) Tom didn't go into work due to feeling stressed. (He was planning on dropping me off since my friend Liz was planning on bringing me home.) Chemo went smoothly; I was awake during most of it due to fewer pre-meds being given to me. My appetite has come back. We spoke with Dr K about a few other options: radiation of the big mass (she is waiting for calls back from radiation oncologists), scheduling a core biopsy (for the purpose of sending part of the sample off to Rational Therapeutics or Oncotech [Dr K (and others, see e.g. the Quackwatch entry on EVA) don't think that assay results match well to what works well in the body] [the CT-guided core biopsy is scheduled for Aug 20; the plan is to take a sample from a tumor which responded to the previous chemo and the big one.], and giving Dr K contact information for TRUMPH Medizin Systeme, which is a German company that is running clinical trials on lung mets using their Interstitial High Frequency Thermotherapy (HFTT).

8/10/03-8/29/03: Stay in hospital involving craniotomy, chest tube and first cycle of topotecan and Cytoxan

August 11, 2003: Update from Liddy's Parents

Early Sunday morning (10 August 2003), a brain scan revealed Liddy’s cancer has metastasized to her brain. Tomorrow (12 August 2003) she will have an operation (a craniotomy) in which the neurosurgeon will attempt to remove the two largest tumors. This is a serious operation which is scheduled to begin at 2 PM and will last anywhere from 4 to 8 hours, depending in whether or not he can remove both tumors in one surgical sitting. We will update you on the outcome of the surgery sometime Wednesday morning.

Here is some background on these events. Bev and I were with Liddy all day last Monday. We sorted through a few hundred photos to select those for posting on the tour log for the Danish Bike Tour. She seemed fine. On Tuesday, she began to experience some bouts of nausea and headache (which increased during coughing and movement). Both the nausea and the headaches increased during the week. We were with her and Tom on Friday before her chemo treatment to meet with her oncologist to discuss a number of treatment options that we had researched to deal with the lung metastases. She reported some disorientation and pain in the upper back in addition to the nausea and headache at this meeting. Her oncologist scheduled a brain scan for Monday morning. On Saturday, however, things got a bit worse and her oncologist suggested in a phone consultation that she go to the ER at the hospital. Bruce met her and Tom there about 8 PM. Bev was babysitting two of our grandchildren, Isabel and Miles.

The attending ER physician had a brain scan (MRI) done around 11 PM. Around 1:30 AM (Sunday), we were told she had two metastasized nodules, one in each hemisphere. She was immediately admitted into the NICU (neurological intensive care unit) in the hospital. Yesterday (Sunday) we were with her and Tom at the hospital and learned the situation is quite serious. There are actually three tumors (not two "nodules"): one in the left frontal lobe, one in the right frontal lobe and one near the occipital lobe. Both of the frontal tumors are large.

We had a number of conversations with physicians throughout the day yesterday and today. They have no idea how the tumor has gotten so large without the pronounced brain tumor symptoms being present months ago. They are quite concerned about increased intracranial pressure and are giving her drugs to reduce it. She is on pain medication and "drifts in and out" of sleep much of the day. She had another MRI that included the gathering of stereotactic data to produce precise 3D position information about the tumor locations (for a potential surgery). This morning (11 August 2003), Liddy, Tom and we met with her oncologist at 8 AM. After hearing what she said about the neurosurgeon’s analysis, Liddy decided to undergo the operation. She is, as you’ve now come to know, a real fighter. Throughout the day she had some additional tests (an X-Ray and a test to evaluate pulmonary function and fluid in the lungs). We waited six and a half very, very long hours before the neurosurgeon met with us and explained the operation, and showed us the MRI images of the tumors.

The neurosurgeon believes the operation will relieve the terrible headaches and nausea she is experiencing, and hopes the operation will have minimal impact on other functionality, such as cognitive processes, motor function and speech. Furthermore, if the operation goes well, she could potentially be home in 7-8 days. The hours were long because we saw her condition deteriorate through the day as she went from sluggish responses to non-responsive and faded in and out of a "light sleep state." Miraculously, she did a turnaround when the neurosurgeon came into the room and by the time Bruce, Sarah, Matthew and Karen came to visit, she knew them by name and even made a few jokes.

This is a very serious operation. She and the family need all of the prayers they can get. Furthermore we do not know yet how and when the treatments for the lung metastases will proceed and how the third brain tumor will be dealt with.

August 12, 2003: Update from Liddy's Parents

After a year of posting disappointing updates, week after week, we finally have some good news to report. In fact, it’s very good news. So far, Liddy has come through the craniotomy with flying colors. Due to certain events that took place early this morning, the neurosurgeon moved her surgery up to 10:30 AM. At 3:15 PM he appeared in the waiting room to tell us that he had removed both tumors in the frontal lobes and that there were no complications. He told us that she was being taken for a CT scan to check for any hemorrhaging within the brain and would be in intensive care around 4:15 PM. When we went to see her, she not only knew everyone, but she spoke to everyone in complete sentences and made some jokes. Furthermore, she was free of headache, nausea, and could move both her right arm and leg (which she could not do toward the end of yesterday and this morning). Thank you so much for all of your wonderful notes of support and prayers. We believe they made a difference in the outcome. The doctors think that she may be able to come home in 7-8 days. After recovering, she’ll then be able to attack the tumors in her lungs. We’ll keep you posted on her progress in a few days and let you know when she’ll be able to receive visitors.

August 14, 2003: Update from Liddy's Parents

Liddy was moved from the ICU to the Neurological Patient floor on Wednesday. She is showing some of the side effects of the operation such as swelling around the eyes. The X-rays showed a significant pleural effusion due to the large tumor in her lung (the accumulation of fluid in the pleural space). Her oncologist wanted to deal with this as quickly as possible and, in consultation with the pulmonary specialists at the hospital, ordered the insertion of a vacuum-assisted chest tube to drain the fluid. This was done just as the extensive electrical blackout hit the northeast and we (Tom, Bev and Bruce) were forced to leave the hospital shortly after the tube was inserted. She is experiencing both discomfort and pain from the tube. We checked on her several times by telephone. The oncologist believes the tube will be in for several days. She is currently using a "walker" and will enter a rehabilitation program as soon as the chest tube is taken out.

Hospital Stay in August 03 (craniotomy, chest tube, and first cycle of topotecan and Cytoxan)

8/15/03: Too much has happened, and so little that I remember. On Tuesday, I had a craniotomy; it probably was an emergency one even tho we knew it was planned for a few days. I'm not sure when it started, but it definitely started Saturday evening with me paging my oncologist since I was getting these weird intense headaches which would be very brief. She said something like "As long as you aren't vomiting, there's no need for you to go into the ER." As soon as she said that, I developed nausea and started to vomit. So, we left for the ER. Dad met us there. Keohan had called in for us, describing what she wanted done. The emergency MRI showed that I had 2 nodules (i.e., brain mets), both in the frontal lobe. (The masses were golf-ball shaped, and 5.5cm and 4cm big.) It turned out that they were were putting pressure on my frontal lobe, and causing me weakness on my right side of my body and confusion. And, they caused the vomiting, of which I had 4-5 episodes. And, in the end, the steroids weren't able to keep the swelling under control.

Enough about before the surgery... I came thru rather well. (The surgeon was the same one who did my biopsy back so many months ago. He specializes in both peripheral nerve tumors and brain surgery.) It seems that I am continuing to improve. I barely notice the right side weakness, and it seems that I have regained the skill of counting backwards.

Well, what is in my immediate future, treatment wise? I have a chest tube in which is working on removing a pleural effusion from my left lung. A chest tube is one of the more painful things that you can have done. It seems that it will take 3-4 days for the chest tube to drain completely, and then we will pack it full of talc, hoping for scarring so that the fluid can't enter the space again.

And, there is another brain met that wasn't reachable via surgery. And, there still are the lung masses...

8/16/03: Based on today's CT chest scan, the doctor is suggesting a bronchoscopy to determine why the left lung isn't responding to the chest tube as expected. The brain surgery was cake... the chest tube on the other hand is difficult. It is painful, seeming like it won't be successful, and loud. (Due to the sound of the suction, I'm having problems hearing my visitors, and due to my weak voice, they are having problems hearing me.) This past week was an eye-opening experience for Tom... there's no doubt in his mind that I might die from Ewing's. So, he will be taking some weeks of family leave, and I hope we'll be able to take some road trips. (Tom wants to take 12 weeks, I want to revisit the decision after 4 weeks.)

8/17/03: We finally got the orders right for a walk. Mom and Dad celebrated their 40th wedding anniversary with all of the local kids bringing them out to eat at Artisenal, and they dropped by the hospital with Grandma Shriver for a quick visit for me.

8/18/03: Julie updated her tumor statement: Attention Tumors in Liddy's Body: We read to you an eviction notice NOT a relocation notice. You have been caught trying to spread yourself into another part of her body. Sarcoma, did you think that we would not find you hiding in the cerebral cortex or the occipital lobe of the brain? Nice try!! But I repeat, YOU HAVE PICKED THE WRONG HOSTESS!! We have cut you out and we will continue to defeat you!! Stupid sarcoma! Liddy isn't going anywhere!! Her defense is overpowering your offense! Sarcoma, repeat after me: encapsulate, shrink, disappear, encapsulate, shrink, disappear, encapsulate, shrink, disappear, encapsulate, shrink, disappear. Any questions?!! Bon Voyage Sarcoma!

8/20/03: The staples in my head got taken out at 6am this morning. My days are passing slowly in terms of drug-induced hazes or in terms of slightly pain days when I'm just not ready for the loopy feeling of the pain meds. I'm not complaining, but it would have been nicer if there was some pain med out there that didn't make thinking so difficult. In fact, one of the things that I find difficult is updating my web page. So, where are we? I still have the chest tube in (hence, my use of pain meds). They have done one treatment with bleomycin, where they put 60 ccs of bleomycin into the chest tube, and then have me position my body in different positions for 2 hours so that the medicine could get to all parts of the pleural effusion. They had planned to do a second treatment, but I don't know if they will since I ran a fever last night, probably from the medicine. So, the chest tube might come out today or tomorrow. My physical exam is still disappointing (i.e. the doctors aren't able to hear lung sounds over most of the left lung), but they decided not to do a bronocoscopy due to the little information that they would get from it. One of the many scans that I have had done was a CT chest. This showed disease progression. So, we have to change drugs again. I will hopefully be having appointments with a couple of radiation oncologists. Since I still have the tumor in the brain, we might need to involve a radiation oncologist who specializes in the head. (Most chemos don't go into the brain, so we would have to change my drugs if we were to think that chemo is the approach.) Tom, Mom, Dad and I think that the big one in the lungs might be able to be shrunk with a little radiation, and Dr. K's response of "It's too close to the heart." just isn't keeping us happy anymore. So, I think we should meet with someone who might do this radiation.

So, it wouldn't be right for me to discuss my hospital experience without mentioning the 2 worst experiences. The first was the day that the chest tube was put it; this was the first day of the blackout. In fact, I think the fact that the doctor was using the stairs was the first evidence that we had there was a problem. There were 3 doctors (2 observing and 1 doing the procedure); they let Mom stay with me (to hold my hand) while they setup. They did the procedure right in my room, cutting between two of my ribs, making a small hole for the tube. Then, the tube was secured into place. It hurt when they put the tube in (the head observer guy asked the guy doing the procedure if he could push it in a bit farther and that hurt; it caused a cramping situation). I asked the doctor putting the chest tube in about pain meds and he said that I don't have to worry about that; he would write for something. The head guy asked what I had used after surgery. Since I didn't need any pain meds after surgery, I responded with that. Soon after the procedure was done, they asked all visitors to leave due to the blackout (they wanted to have an accurate count of the number of people per floor just in case there was a fire). Within a few hours, it was obvious that I was going to need help at making the time past, so I stood up beside my bed. This made my machine fall down. I immediately paged the nurse, but she didn't come after 15 minutes. I could hear the fluid leaking out of the machine, but couldn't tell if it was the lung fluid or the water. (It was dark in my room.) Tom and Mom picked that moment to call; they ended up calling the nurse's station, and getting a nurse that way. The nurse set the machine back up, and taped it to the floor.

This began the second worst experience. As they were taping it to the floor, I asked how was I supposed to use the toilet and the answer came back you can't. No orders were written for the tube to be clamped. The nurse left and I called her back with the call button, it was answered after about 15 minutes. At this time I reiterated to the nurse that I still needed to use the toilet. She said that she would page the doctor and she left. After waiting another 30 minutes I rang the call button again and this time once a nurse responded, I was given a list of choices, one being a bedside commode. And the nurse went off to get me one. After waiting for 30 minutes I pushed the call button again and the nurse says she can't get me a commode and she leaves. I call again and tell her I still have to use the toilet. She asks if a bedpan on the chair would work. I tell her that would be wonderful! This time she actually came back and set me up with a bedpan on a chair. So 3 hours after my first call to the nurse I was able to pee.

8/21/03: The chest tube seems to be a permanent feature in my chest. I received my third treatment of bleomycin. The surgeon who put it in seems to want to leave it in until it produces less than a certain amount of fluid, and mine continues to produce way more than that amount. A volunteer dropped by the room and offered "art therapy"; Mom and I designed a bracelet for Isabel. I had a dressing change of it which caused so much pain that the nurse gave me pain meds (normally, one asks for them) and I hadn't been asking since I wanted to remain coherent. My doctors are suggesting a stem cell rescue done twice; once with thiotepa and once with melphalan and etoposide. We met with the doctor in charge of the transplant program, and he walked us thru the timeline.

8/22/03: We learned that the new chemo will be 5 days of in-patient (topotecan and cyclophosphamide). So, I will not be going home until next Friday/Saturday or so; that seems so far away. The chest tube is out!! It came out today at 4pm. It didn't hurt much in coming out. Within 5 minutes, I was biking on the stationary bike in the hallway. I will never complain about walking with a pole again... what a feeling of freedom. The ENT came by to look at my vocal cords thru a scope thru the nose; the left one isn't moving correctly, but he thinks it will straighten out in a few days. I really dislike this weak voice that I have; it seems that everyone whispers around me. Tom and I watched a few episodes of Star Trek on my laptop; it was so nice to get back to something that seemed normal.

8/23/03: Mom and Dad visited in the morning. I did a little biking (8 minutes or so) before they got here, and some biking once they got here. (biking photo) It will be quite a while before I'm up to my 45 minutes - 1 hour of riding. Tom was with me most of the day. He read from Harry Potter to put me to sleep. Kit, Wee Teck and Ms Yan, and Bruce and Isabel visited.

8/24/03: We found out that my oxygen saturation goes very low when I'm walking. One of the doctors thinks that this is due to the disease. It somewhat explains my not being able to walk very far. The same doctor wrote orders that I'm not allowed to bike! We promptly got those changed. Lots of visitors today: Matt in the morning, Michelle in the afternoon (we played scrabble), and Daniel and Juan Carlos in the evening.

8/25/03: I biked two sets of 10 minutes each. We spoke with Dr K; first time in a week. A couple of decisions were made. We will wait until the radiation of the head guy is back from vacation before doing anything with the head. We don't have to make the decision yet about stem cell rescue. We will continue with the planned topotecan and Cytoxan for at least one cycle. And, there was other news, the type that Dad is best sharing.

8/26/03: I biked one set of 20 minutes. I was ready to continue, but Tom wasn't ready to let me. I'm back on the heavy pain meds; tumor pain in my belly. So, it was kind of hard to hear from my doctor that she thinks I only have months left. I had always been hoping that I would be in good health my final months. (I'm not sure from where I got this idea.) In fact, my oncologist said "Just 4 weeks ago, she was hiking the Grand Canyon," with an implied "Look at her now." I'm convinced that she saw me on a bad day... maybe I had been trying to walk too far that day. Or my red blood cells decided not to live in my checks as they normally do.

8/27/03: I biked for 25 minutes. I think I'm starting to reach the point that gives me peace. The ENT showed up again, and talked about the two procedures that we could do which might help with my voice; the voice is low on the list of priorities. Kit visited, as did Mom and Dad in the morning, and Matt and Karen in the evening. Tom was with me most of the afternoon/evening. We made two appointments to see radiation oncologists next week. One is something Tom found that uses your breathing cycle to determine when to irradiate the lungs. The other is someone suggested by Dr K to consider looking at radiation to the big one. I tried portable oxygen today; it did make walking easier. Plus, it made talking easier; I had started talking in phrases, and I could move back to sentences.

8/28/03: I had a brain MRI in the am. I grow good cancer! I found out that the whole brain radiation might not work... I didn't know that. I thought if you zap cancer with radiation, it died. Since I have been able to make chemo-resistant cancer, there's a chance I can make radiation-resistant cancer. So far, I have had no remarkable chemo side effects. I will look more like Lance Armstrong with my incision on my head; he also had brain mets. I biked for 30 minutes.

8/29/03: I received a blood transfusion today; my hemoglobin was at 7 something, with the bottom of the acceptable range being 12. A friend complimented me on my "keeping up with my exercise program." Since this is in part in error, I thought I would straighten it out publicly. If I exercise enough, then the nurses don't fight me when I refuse the heparin injections; these injections are some of the most painful subcutaneous injections I have ever received. Plus, they leave painful lumpy bruises. (The heparin works as a blood thinner and works to keep blood clots at bay.) Of course, there is part of me that sees the exercise bike across the hall, and can't wait to get on it. My jaw hurts; we found out that the neurosurgeon cut my jaw muscle when he did the surgery. The things that you find out after surgery... I biked 30 minutes today.

August 26, 2003: Update from Liddy's Parents

As you know, Liddy’s cancer has been particularly resistant to all of the chemotherapy drugs that have been used against it and it has metastasized to her lungs and her brain. It is relentless. As painful as the 8-day chest tube process was, it did not work. She now has as much fluid (if not more) in her lung lining than was there before the procedure was done. This makes it increasingly difficult for her to breathe when walking. (Amazingly, she does not have this problem when biking.) The fluid build up is in response to presence of the tumor. When she is released from the hospital, it will be with a portable oxygen unit. She has referred pain in her shoulder from one of the lung tumors, which apparently is also compressing her laryngeal nerve, giving her a weak/soft voice. We (Liddy, Tom, Bev and Bruce) met with her oncologist, Dr, Keohan, very late yesterday afternoon. We had many questions about various treatment plan options given where we are with this wretched disease. Each option takes a certain amount of time to determine if the cancer is responding to it or not. This typically involves two cycles of the treatments followed by CT scans, MRI scans, and/or X-rays that are contrasted with the base-line tests to determine the effectiveness of the particular option. Furthermore, each option comes along with a set of side-effects that can have a significant impact on her quality of life. Some side-effects are much more serious than others. Most of the options before her are physically, psychologically and emotionally demanding. Lastly, the outcomes of the options against her cancer are unknown, given the lack of history of the use of most of the options with adults with her Ewing’s sarcoma/PNET. Time. Quality of life. Potential outcome. These difficult and complex considerations where immediately driven home when Dr. Keohan told us that we are dealing with months, not years, as Liddy’s life expectancy. Given such devastating news, we take life one day at a time, as the gift it is.

Liddy elected to begin chemotherapy last night with topotecan and cyclophosphamide (with appropriate pre- and post-medications) to attack the tumors in the lungs. If these drugs work, we will rejoice and give thanks. If not, some difficult decisions lie ahead. We ask for your prayers and thoughts for Liddy and our family to guide her and us through the quality of life and life expectancy issues. Hopefully she will be released from the hospital either Thursday (the 28th) or Friday. Her ability to actually use any specific option after these drugs is limited by her general health, her blood counts, etc. Some of the options that would be considered are: harvesting stem cells 10 days after chemo is over in case she would undergo High Dose Therapy (HDT) using thiotepa, melphalan and etoposide; undergoing either whole brain radiation or stereotactic radiotherapy to treat: (a) the tumor near the occipital lobe (b) any potential material left behind during the neurosurgery, and (c) any micromets that might exist in her brain; using radiation and hyperthermia to deal with the lung metastases; using vaccine-based immunotherapy to deal with her sarcoma; and palliative care.

August 29, 2003: Update from Liddy's Parents

When we said that Liddy’s cancer was relentless in the 26 August 2003 update, we should have said "relentless, extremely aggressive and unforgiving." Yesterday morning Liddy had a MRI of her brain. It showed that in just two weeks the tumor near her occipital lobe had doubled in size and that there were new lesions near the surgical sites in both the left and right hemispheres. After our meeting with Dr. Keohan on the 25th, we thought the treatment plan could focus on the large tumor in her lungs and chemotherapy was immediately started. Given the rapid growth of tumors in her brain, Dr. Keohan is now recommending that she begin whole brain radiation, a particularly demanding form of treatment. We believe this recommendation will be confirmed when we visit the radiation oncologist next Tuesday. Again, we ask for your prayers and thoughts for Liddy and our entire family.

8/30/03: I got out of the hospital today!!!! Tom and I went to the folks house; we plan to spend a few days here. Mom offered to help Tom take care of me. Of course, I don't think I require that much care, but just having someone suggest and cook meals is wonderful. And, have someone else remember the meds and when the patch has to be changed. Mom and Dad probably aren't ready to give up on their routine of spending a lot of time with me (even tho me being loopy on pain meds isn't high quality time). As we drove away from the hospital. I commented on how nice it was to be in the real world, and Tom, Mom, and Dad all seconded it. It wasn't clear to me how little time they had after spending their time with me. I'm on oxygen all of the time; we got a room air converter which converts room air to oxygen. Then, I have cylinders for trips out of the house. I will also be getting a backpack model to walk around with. The first set of stairs were hard to climb. No biking; didn't set that up.

8/31/03: I biked 35 minutes on the folk's deck on an exercise bike; I spent most of the time talking to Matt. (photo of me and Matt, photo of me on bike) Lots of coughing. Matt wants to do a portrait of me, so he took pictures. I didn't want to have the oxygen tube in it, so I took it off, which made it more difficult. Eran and his family visited. photo The folks gave us a book to read on dying called Final Gifts, and the first chapter brought both Tom and I to tears. I can't get extra oxygen in if my nose is stuffed up. I'm convinced this nose thing for the oxygen is going to permanently change the shape of my nose.

9/1/03: I didn't mention my roommates once during my entries on my hospital stay. I don't know their names, but they each had a very distinctive characteristic: the foreigner, the "help me," and the "I'm going to die." The foreigner had very few conversations with her doctors which were above a second grade level; luckily, 2 of her children visited daily, and participated in the medical conversations. She left the room when she had surgery. "Help me" was a woman in an extreme estate of fatigue. She would carry on conversations, the few times the doctors were able to get her to talk, in a very soft voice, with her eyes closed. She seemed to sleep 99% of the time, except when her visitors wouldn't let her sleep. She, while sleeping, would chant "Help me." She also left the room for surgery. The third woman was an older (80's) woman with pneumonia. Her treatments were very loud, and contained lots of water sounds. She would begin every conversation with "I'm going to die." Sometimes, she would just yell it out (in a weak voice) for people in the hall to hear. She was still in the room when I left. Alan S. visited this morning; we talked about all sorts of things. In fact, I probably spoke too much since I don't breathe in my oxygen when I speak. Bruce and Sarah and kids visited; they brought stuffed grape leaves, spinach pie, and the most wonderful pita bread. Mom made hummus, potato salad, and yogurt with cucumbers. All in all, a very nice meal. Tom and I took a nap afterwards and my tumor pain started up when I woke up. We swapped my patch, and I took a fast-acting morphine. The morphine didn't seem to help. A heating pad helped a bit.

9/2/03: We visited two radiation oncologists today; they both recommended whole brain radiation, and one recommended radiation to the big lung tumor, and the other didn't. We (Tom, Mom, Dad, and me) were more comfortable with the one who recommended radiation to both sites, so we will go with him. He even said that my voice was typical of someone who had a lung tumor where mine was. Even tho we are looking at the purpose of the radiation to be pain management, the long term side effects aren't that bad. Short term memory problems. Hair loss. Unfortunately, we won't know if it works for quite a while; they will rescan a month or so after treatment is over. I will be receiving 15 treatments to my brain, and 15-20 to the lungs. The short term side effects for the lung radiation is mostly esophagitis (burning in the esophagus). I might start as early as this week; my simulation is tomorrow. It is not clear if I will be receiving chemo while receiving the radiation. [See Introspectives Along the Way page 9.]

9/3/03: I biked 45 minutes on a trainer while watching a Buffy episode. It wasn't ideal (the bike wobbled, the trainer skipped, the oxygen tube bothered me, the laptop was positioned too high), but it was wonderful anyway. I had my simulation for the whole brain radiation this afternoon. I begin radiation tomorrow. We (Tom, Mom, Dad and me) worked on a puzzle for a while. Due to my nose bleeding, I was without oxygen for part of it. I felt light-headed.

September 3, 2003: Update from Liddy's Parents)

Within the next few days Liddy will begin whole brain radiation treatments to deal with the metastases in her brain. A few days later, she will begin a regime of radiation treatments using 3D conformal radiation techniques to target the large tumor mass in her lungs. The treatments will be scheduled every day except Saturday and Sunday. Tentatively, she will undergo 15 whole brain radiation treatments and 14 conformal radiation treatments. She will (probably) not be having chemotherapy during this time. The follow up scans to determine the effectiveness of the treatments will take place 4-5 weeks after the treatments have ended. Please pray that her cancer reacts to these treatments, which are focused on increasing her quality of life.

9/4/03: Matt made the most beautiful block to keep the front tire of the bike stable while I'm on the trainer. I had a full-blown nose bleed this morning. The current theory about why I'm having problems with my nose is due to the dryness of the oxygen. We have been only been running me on oxygen with water, but we weren't using the water for the trips into the city to see doctors. I had my first radiation treatment on my brain today. I didn't feel anything, except for the discomfort of not being able to move my head due to the mask that they use. (The mask was molded using my face as part of simulation process. The mask is mesh and gives just a bit.) In fact, there was a man who came into the room, leaned over me, poked at my tattoo close to my temple (which I also got during the simulation), and left the room. I think he might have been the doctor, but I'm not sure since I couldn't move my head to see him. I was disappointed to receive a call from the doctor later in the day; he cancelled my treatment for tomorrow since my WBC is very low. I was surprised, since for my previous radiation, the doctor didn't seem to care what my blood counts were. In fact, I was the one who asked for the blood work to be done because I have been pale, and I'm never pale so I wanted to see what my hemoglobin was. So, it didn't seem fair that he used the values to delay my treatment. We got in on Monday, and they will do another blood test to see where the values are. We later found out in a conversation with my medical oncologist that your skull produces 10-12% of the WBCs, so it is better to let the bone marrow start recovering before doing lots of radiation to the skull.

Mom and I had a good phone conversation with the medical oncologist; no chemo for at least 3 weeks. She wants to take each day as it comes. Due to my low RBC, she ordered Procrit, which is a weekly injection which attempts to raised the hemoglobin value. She couldn't explain the light-headedness that I have been having when off the oxygen; her only theory that I remember is it might be due to the patch. But that wouldn't explain why it is just when I'm off the oxygen. She ended the conversation by saying that I sounded good, which, to me, is just wrong. I still have this weak voice. In fact, I prefer not talking most of the time to talking with my voice. I grunt a lot, and make other noises.

Tom went home to check the mail, get clothes, and run some other errands. Auntie, Dina, Natalie and Aunt Mary Lou arrived in the late evening for a week visit.

September 2003

9/5/03: I biked 20 minutes today. I am having lots of fatigue, which I think is chemo fatigue. The beautiful block made by Matt worked fine. Auntie cut my hair. I have been losing it, and my scalp has been tender. We went into the city for my lung radiation simulation. I also had a chest CT scan. The rest of the planning for the long radiation will happen on next Friday so I won't be starting the lung radiation for at least a week. Natalie and Dina came with Tom and I for the drive so we were able to visit. My jaw pain is less. Both of the local sibs and their families came to dinner (stuffed pork chops, red beans and rice, and some veggie dishes). We started another puzzle. [See Introspectives Along the Way page 9-10.]

9/6/03: After a long breakfast, Dad and I worked on moving my web page from NYU to it's current home. Since Dad had different ideas about organization, it took longer than previous moves of the pages, and we aren't finished yet. Wee Teck and Ms Yan visited. They took Tom out for an outing at Teatown Reservation, a local nature preserve. While they were out, I took a nap. Family members commented how much better I looked than yesterday; perhaps I just needed a day away from the hospital. We celebrated Mile's first birthday.

September 2003

9/7/03: I biked 25 minutes; I was hoping that it would help with the fatigue. I received the Anointing of the Sick sacrament after mass today. Most of my family was there, along with a few family friends and Kit and Jon. I'm not a big church goer, and I normally feel uncomfortable during mass, but this one was not uncomfortable. A number of us found it sad tho, since we were crying. As usual, I was very tired when we got home, and sat in the bedroom for a while.

9/8/03: Tom went to visit his mother; he plans on spending the night with her. Mom and Auntie brought me in for my brain radiation treatment. Since my WBC was low last time, I had to have blood work done to see if I could have the treatment. It took 2 hours for the results, and, yes, my WBC climbed a tiny bit. So, I had my 1 minute of radiation. Once we got home tho, we got another call from the radiation oncologist, saying that he spoke with my medical oncologist, and she wants to delay the radiation due to my RBC. So, tomorrow and the following day, I will receive red blood cell transfusions, and then hopefully receive brain radiation on Thursday. These delays scare me and frustrate me. We found out that one of the brain mets doubled in 2 weeks 12 days ago; assuming that it keeps its current rate of growth, in 2 days, it will be 4+cm, and that is close to the point that I will start to have symptoms! We dropped by a store, and I did some shopping. I was feeling very light headed, and glanced at the oxygen gage to see what I was getting, and the tank was empty. Mom got me another tank from the car; it was amazing to me how much better I felt within a minute! You would think that the tank would warn you with a beep-beep-beep that it is running out. Someone hit the transformer that supplies power to the folk's home and 3 neighboring houses. The power company wasn't able to bring the folks all of the way back (they could just get a few lights), so they dropped off a portable generator for us. I have enough tanked oxygen for 48 hours, but it would have been a pain to use the tanks instead of the room air converter that we normally use when I am home.

9/9/03: Mom and Auntie dropped me off for me blood transfusion in the morning; I was only supposed to get one unit, but when I got there, they had me down for 2 units, and platelets if needed. Of course the platelets were needed (6 units, which is the standard size), so I didn't get out until 5:30. 9-5:30; what a day. They didn't have a bed so I was in a chemo chair the entire time. Plus, they didn't have a way for me to hook up my water to the oxygen, so my nose wasn't happy after the first few hours. Luckily, I didn't get any full-blown nose bleeds; those might have been difficult to stop with my very low platelets. Tom came by around noon, and watched me sleep for a while (the pre-meds always wipe me out). I finished Final Gifts. Dr K mentioned that my way of looking at the brain mets increasing in size is bad (no scientific basis); she insists that we are moving as fast as possible (and I believe her).

9/10/03: Since I got both transfusions yesterday, we went into Columbia for blood values. Since they were good enough, we went onto Cornell for a brain radiation treatment. Bruce met Tom and I there, and stayed with me during the short wait for the treatment. I saw the radiation oncologist for my weekly visit. He thinks that the wobbliness/dizziness/light-headedness might be due to the brain mets. He also thinks I might be having absence seizures. Tom and I came home for a couple of days. Mom and the aunts and cousins came over to help me go thru my clothes; Tom was concerned that I was going to do a "death cleaning," but I think the presence of the others stopped me from getting rid of a number of things that I would have otherwise. My Gilda's meeting was tonight; I felt a bit like I dominated the meeting. Everyone thought that I had done a wonderful job of covering up my craniotomy incision.

9/11/03: Tom and I left at 6:20am for radiation, and returned by 8:30. We would have made better time if it wasn't 9/11, and if they knew where my chart was at the clinic. We took care of a bit of paperwork and stuff of that sort today. I think my fatigue is finally starting to lift. I feel tired, but it is more like a normal tiredness. My hair is falling out fast and furious now. Juan Carlos came to dinner and entertained us with his recent vacation stories.

9/12/03: I went in for the second phase of the lung radiation planning; it turned out to be x-rays. Plus I another brain radiation treatment. I got blood results from yesterday; the platelets are climbing slowly, but the WBC and RBC are looking good. The radiation oncologist thinks that some of my current symptoms [time passing, wobbliness] might be due to swelling in the brain caused by the radiation, so he increased my steroids. If it isn't better on Monday, I'll probably get more scans. We returned to the folks. Julie, Chia-ling, and Susanne are in for the weekend. Susanne brought cold cuts from her German butcher which we ate for most of the weekend. Chia-ling had flight connection problems and got in in the late afternoon instead of the early morning. We played "beauty parlor" (photos) and Julie and Susanne helped get the rest of the hair off that I hadn't pulled out, and then we played "doctor" since my pulse oximeter was delivered. (The pulse oximeter gives the pulse rate and the oxygen saturation.) Tom also trimmed the hair that didn't fall out; we tried for the Dr. Seuss haircut again, but I don't think it is working as well as the first time due to the shaved hair from the craniotomy. My brother Mark from PA came for the weekend.

September 2003

9/13/03: Someone organized a surprise party for Tom and I. (Tom's birthday is on Sept 15.) Lots of friends came, some having quite a drive (Hana from New Hampshire, Rich from Waltham, Mass, Fabian and Kher from Maryland, and many friends from New Jersey). I needed breakthru meds in the late evening.

9/15/03: Cliff gave Tom and I the DVDs for the first season of Alias, and I attempted to bike to the first episode but my laptop kept giving me problems. I still got a 45 minute ride in. Today is Tom's birthday. Unfortunately, going in for a 2 hour wait-a-thon at the radiation center probably wasn't how he would have wanted to spend it. I thought that I was going to get lung radiation, but they just took more x-rays. They said that the lung radiation will begin tomorrow... I'll believe it when I hear the zapping. The brain radiation went fine. I'm looking forward to having my platelets return to normal so that Tom can properly shave my head; I like the "clean look." The radiation oncologist wants me to talk to the neurosurgeon about the anti-seizure meds since I still am seeing auras. Tom and I came home, and will stay most of the week. Susanne brought dinner (Vietnamese food); she and I talked about my current treatment.

9/16/03: Tom and I left at 7, and were back in the area at 9:30. I finally got my lung radiation. They approached me from 3 angles; both the brain and the primary tumor radiation were only approached from 2 angles. The machine had "internal blocks" so there was little switching time between the different angles. (The brain radiation machine has two blocks to protect the eyes during the treatment.) A physicist had to be around for the first lung treatment. There was quite a bit of discussion on whether I had to change into a gown. With most of my tank tops, all of my tattoos are visible. And, I just feel more comfortable in not changing. I found out that the doctor ordered 14 lung treatments. Tom brought up my outside bike for the trainer; hopefully it will be the necessary motivation for me to be more regular with my biking. "Light exercise" is supposed to help with the radiation tiredness which many feel. We had breakfast with Susanne; got to see her apartment without the boxes from her recent move to Hoboken. We took a long nap (Tom didn't sleep well the night before). We had leftovers (curry chicken for me) for lunch; I plan to eat lots of curry since the nurses warned me that the esophagitis might start really soon. I biked for 45 minutes; it felt very nice, but it was very difficult getting me on the bike. I think it might have been that I was just too tired.

9/17/03: At the times that we are driving, it is only taking us 30 minutes to get to the hospital and 35 minutes to get back. (We are keeping track of the time since we both are rather tired, and we don't know if it is due to the treatment or the transportation hassles. We are taking 2-3 naps a day.) We would have been in and out in 20 minutes (that's how long the two radiation treatments took), but since today is Wednesday, I had to meet with the doctor, who didn't come in until 45 minutes after my treatments were done. When he walked into the room that I was in, he asked if I was still on oxygen, implying that the 2 lung treatments I had should have the wonderful result of getting me quickly off the oxygen. He mentioned, when I questioned, that I might need a chest tube to inflate the left lung if the treatment is successful. Of course, since he wanted to see my hands trembling (one of my symptoms), they weren't trembling. I found out about follow-up care; he plans to do scans a month or so after the radiation is finished to see if it was successful; it wasn't clear what he would do with the results of the scans. Casaundra and Ryan came for lunch. I biked for 45 minutes with Tom to Alias. Daniel and Juan Carlos came for dinner (beef stew) and a movie (The Blues Brothers). Julie wrote another tumor statement: Some of you are getting zapped again with radiation. An army of platelets, RBCs and WBCs were brought in last week to continue the battle. You will only get the time and attention from Liddy that is necessary for treatment. The rest of the day is Liddy's to do with as she pleases. This is her life and she will continue to live it even in your presence.

9/18/03: We left the house at 6:30 for radiation, and got back before 8:30. It seems that we should be able to make better time. My appetite has been really big lately; I'm pretty sure that it is a side effect of the steroids that I'm taking for brain swelling. I don't have the steroid face (a rounder face than normal), but don't doubt that I will get that soon. Yesterday, the radiation oncologist mentioned that we could "play with the steroid dosage" once I'm done adjusting the anti-seizure med. On the good side of things, my pulse seems to have settled down to closer to normal. While I was in the hospital, it was most frequently 120+, with my normal being 65. I have a shaved head again. Tom and I are still taking naps; it is kind of nice that he needs them too; stops me from feeling like I'm sleeping the day away. I biked for 45 minutes to Alias.

9/19/03: After radiation today, we drove to the folks to spend the weekend. Only 5 more brain treatments and 10 more lung ones. Uncle Rich (Mom's brother) is visiting, along with Erin and her baby Chad and Richie. We haven't seen them in a long time! We had a very nice dinner (beef and squash) and started a puzzle. I biked 50 minutes on the deck on a trainer.

9/20/03: I slept with oxygen on (I haven't been using it much at night recently) and think it improved my sleep. Tom and I experimented with a bike ride off the trainer for the first time in a really long time. The local sibs came for an early dinner to see the southern CA visitors; Joy and Loc and their two kids (Matthew and Noah) came up from staying in NYC for the previous day.

First Real Off-Rrainer Bike Ride (9/20/03)

Tom and I want to go on a fall colors trip, which to me, means bike rides. So, we wanted to verify that I could bike off a trainer. This really means verifying that I could either bike with the oxygen, or bike without it. After much discussion on where to go at breakfast, we decided on a segment of the Rails-to-Trails path that Dad was sure was pretty flat. We didn't bring Tom's bike, and only had my "trainer" bike here, so we borrowed the folk's bikes. They both own Cannondale hybrids. Dad's had toe clips, and Mom's just had flat pedals, so the first thing was to swap the pedals so that my bad foot would stay where we wanted it. This, plus other adjustments took quite a while. (Photo of us leaving the folks. You can see the portable oxygen cylinder that I use for short trips hanging from my shoulder.)

We then left for the path. Tom and I fought about the oxygen; it was mostly my fault. I thought that since I was already wearing the portable oxygen cylinder, that I should see if I could bike with it. But, no matter how Tom and I tried to rig it on my body, it would swing forward and get my balance off. Even taking off my hydration system, the cylinder wouldn't stay on my back. Finally, after some tears, I just took it off, handed it to Tom, and biked away. I assume the fact that I could "bike away" showed that I really don't need the oxygen to bike with. I should just have trusted my experience with the bike on the trainer where I take off the oxygen due to too much sweat on my face and not bothered trying to bike with it.

Tom was able to keep the oxygen on his back; he biked with it to make sure that I would have it if I needed it. Luckily, I didn't. I felt a bit out of breath, but no dizziness or light-headiness. I wanted to keep biking, but Tom thought that we should stop after 45 minutes or so. We didn't time how long we biked, and even looking at a map, we can't tell how many miles we biked (it seems like it might be 10-12 miles).

The quality of the Rails-to-Trails path wasn't good. It was no doubt due to the after effects of Isabel. But, it made Tom and I both comfortable that we weren't on our road bikes which would have slipped more and not handled the going over the tree branches as well. We plan to go back tomorrow, and see how many miles we can go. Hopefully, we'll be able to work it up to something reasonable (20-40 miles a day in 2 weeks we have before our planned trip).

9/21/03: Matt, Karen, Lukas, Tom and I went for a 2 hour ride today on the Rails-to-Trails path, we think we did almost 18 miles. It felt great with the exception of one section that winded me too much due to, I think, going up-hill. Again, Tom biked carrying an oxygen cylinder just in case I needed it. Joe (Tom's brother), Bethany, and Joseph dropped by for a visit. (Joseph was born a day later than Lukas.) Matt, Karen and Lukas came over and Lukas and Joseph played. Uncle Rich and Erin and Richie spent the day in NYC; we heard of their adventures when they returned around 10pm. I enjoyed the break of two days of not receiving radiation.

9/22/03: After radiation, Tom and I came home and probably stay for 2 weeks. There aren't any visitors at the folks planned for this upcoming weekend. I biked for an hour on my trainer; the outside weather just didn't look enticing enough to go out there. Tom and I went food shopping and bought some mums for our stoop.

9/23/03: In the middle of the night, I had ankle pain. First time in a long time; probably due to walking that I did yesterday. Mom and Dad came over today; Dad to work on my home network, and Mom to finish helping me sort thru my clothes. I now can say that I don't have any clothes from high school anymore! I biked an hour on the trainer (first to Alias, and then to some sit-com). Juan Carlos came to dinner (split pea soup).

9/24/03: We plan to continue to settle in. The folks, when they came yesterday, brought our bed back from their home. (It was important to me to have my futon at their home when I got there after the hospital to make it comfortable for me.) I'm starting to notice a sun tan on my chest from the lung radiation. I have a cream to apply, and, due to the way that it feels (very sticky and not very nice), am looking forward to being done with the radiation. Tom and I went for a 90 minute bike ride in Liberty State Park. I don't know the distance; I really have to find our bike computers. Tom's bike was out-of-whack ("My bike doesn't want to go!"), and it now in the bike shop for a tune-up.

9/25/03: One of the side effects of radiation that my medical oncologist was worried about was the fatigue. And, I might have had a bit in the beginning. But, the past few nights, I have been very wired. And, my naps, if I take them, are short. Wired is nicer then being tired, but it is another one of those "why am I so different" frustrations. I must have been dreaming last week when I thought that I didn't have the steroid face; it feels like it is getting fatter and fatter every day. I found out that once I'm off the steroids, it will take a month or so for my face to return to its standard roundness. And, the nurse also said that I will drop back to my normal weight in the month. I got the okay to decrease the amount of steroid by a pill a day; we'll see if any symptoms change. The one symptom that I have that bothers me (aside from the trembling in the hands and the weak voice) is this "sea legs" problem that I have. It feels to me that I rock back and forward (when sitting or standing) like I'm on a boat. The doctor thinks that maybe there is swelling in the cerebellum which is close to the tumor in the occipital lobe and this gives me the wobbles/sea legs. Planning continues on the bike trip to see fall colors; can't wait. I biked 70 minutes on my trainer; would have gone longer, but Tom was ready for dinner. A friend recently said "A biking Liddy is a happy Liddy."

9/26/03: Last brain radiation! I was given the mask that they used to keep my head still during the treatments. I can wear earrings again. I had to take them out each morning for brain radiation, and it just seemed easier not to wear them. I felt naked without earrings so putting in my studs was one of the first things that I did. Joy, Loc and their two kids visited us today. I showed them the backyard, which was very very overgrown. I probably should have taken a nap today; I fell asleep during their visit. No time for biking today.

9/27/03: It was raining off and on when we got up, so we had breakfast and packed the car (with the bikes) and drove to Long Island to visit Tom's mom, who I haven't seen in many months. We went garage saling today; it had to be one of the best garage sale experiences that we have ever had on Long Island. We found this park which had 20+ tables set up. There were lots of books, and not many toys, but we were able to make it worth our while. (I have been looking for toys for our frequent younger visitors.) Using the portable oxygen worked out well.

I think that there are a couple of correlations between my voice and other things. First, the ease of breathing at the beginning of my rides. Today, my voice was weaker than it normally seems to be, and the first 20 minutes of our ride just wasn't very fun for me. Second, I don't seem to be able to drink water at room temperature when the voice is weak.

Tom and I went for a 1.5 hour ride; we went 15 miles. (I found our bike computers.) The ride was going thru residential neighborhoods; it is surprising to me that we don't have a nice default ride to do out here like we do at my folks. I'm not wearing a helmet yet; my current ones aren't comfortable yet, and I don't want to have too much pressure where they just finished radiation.

I think I noticed taking the reduced Decadron; my appetite is a bit more reasonable. I noticed no new symptoms due to the reduced Decadron. [See Introspectives Along the Way page 11.]

9/28/03: We left Long Island soon after breakfast. The weather was agreeable enough for Daniel, Tom and I to spend 2 hours in the backyard cleaning up. We still have to build something for the blackberry bush, but we tamed the rest of it. We watched a movie with Daniel (Animatrix) and had dinner (catfish). I biked during the movie (1.5 hours, 15 miles).

9/29/03: Every morning on the drive to radiation, we get to see people biking along the Hudson River Park, on the bike path that goes along the Hudson River. Today, we joined them for a ride after radiation. We also did some shopping in Chinatown (I couldn't find any steamed pork buns, but I did find taro thingies). There was a recent NYTimes article which suggested the Mei Lai Wah Coffee House at 64 Bayard for steamed pork buns. We had our first oxygen delivery here in Jersey City; previous deliveries happened at the folk's house. Juan Carlos brought dinner (Caribbean from a local restaurant); I'm still having taste issues which will hopefully go away when the lung radiation is over.

Bike ride on the Hudson River Park Path (9/29/03)

For some reason or another, it seems that each new ride is something to be celebrated.

I jealously ogled the bike commuters and other users of the Hudson River Park Path as Tom and I drove in for radiation each morning. Not only does the early morning seem like a wonderful time for a ride, but, from experience, I knew how pleasant the ride could be on the path. I finally convinced Tom that we needed to try it out. So, we brought our bikes with us, and after radiation, about 8am, we found a parking spot on the street and took off. Actually, it wasn't that easy; any time we have the bikes on the car, both of our rear brakes get out of alignment. So, once we unloaded the bikes, I fussed with the rear brakes (unsuccessfully). I decided to just release the brakes (we wouldn't need them, right?) Then, we took off.

Where we started was basically the beginning of the multi-use path. There are roller bladers, joggers, and walkers. There were many fewer people then in the past, but that might have been because we mostly used it on the weekends. There were many conflicting signs (e.g., stop signs with green lights). The nice part of the path lasted 30 minutes or so. Our total ride was an hour and 45 minutes, and was 18 miles. It was a bit chilly for Tom, but I warmed up fine.

I did have a fall due to the brake situation. I came to a red light and a car pulled out in front of me. I applied my back brakes, not remembering that I should use the front. A man helped me and my bike up so that I could get out of the street. (I might not need oxygen to bike, but I am definitely slower at moving around without it.) I skinned one of my knees. I decided not to clean up the knee at that time, but due the amount of blood that came out, my sock is probably ruined. It took quite a bit of effort to clean up my leg once we got home.

9/30/03: Bruce and Miles came to lunch today; he gave me some ideas on making a fence for the blackberry bush. I biked on my trainer to give Tom a break; I watched two Alias episodes; 1.5 hours, 16 miles. I stopped smiling a few weeks ago. The act of smiling seems weird now due to the nasal cannula tubing lying on my cheeks; the feedback isn't the same. I needed some id pictures take, and I was trying to smile, and I just couldn't. Even taking off the cannula; the cheeks were frozen.

10/1/03: Tom took some pictures of me on the table after radiation. Photo. Dr Sherr agreed to decreasing the steroid again! I'll go to 2 pills per day for 4 days, and then 1 pill per day. Of course, this decreasing will only be done if there are no negative side effects due to the decreasing. Tom and I both saw the optometrist to get new glasses. My last pair are from 3 years ago, and are quite scratched. I got a different type of frame; a bit of a rectangle. My friend Liz helped pick them out. I'm a bit worried that the new frames work well with my steroid face, but not with my normal one. We'll see in 2 weeks how they do. Liz and I went to the water front and chatted about what has been going on and what I have been spending my time doing. I mentioned my desire to work more on the family recipes. I was out of the car 4 hours, which is the amount of time that the big oxygen cylinder lasts. Tom had lunch with some of his work friends. Alan, my NYU advisor, visited in the afternoon and stayed for dinner.

10/2/03: Susanne and Kit came for lunch (salad and sandwiches). Kit stayed on for dinner (leftovers). Tom did an outdoor ride; I think I'm finally starting to feel the radiation fatigue so I took the time that he was out to lay down. I biked for 45 minutes on my trainer and packed for our trip. I discovered that we really don't have enough winter biking clothes so I made a Bike Nashbar order which will hopefully be delivered successfully to Rich's place before we head to Vermont. Due to the trip, Tom made a run for more small oxygen cylinders at the oxygen place; we think we need a little one and a big one per day of the trip. We made arrangements to exchange some in Vermont, but we think it will be easier to just have all that we think we will need. We received a care package from Chia-ling, celebrating the end of brain radiation!

10/3/03: Last day of lung radiation! Day 1 of Fall Foliage Trip (FFT). We were an hour late to radiation due to packing the car, etc. Afterwards, we dropped by the folks for a second breakfast and some borrowing of biking clothes. We then drove thru Connecticut to West Roxbury, Mass to visit Liz and Neal. We got to their place too late to see the kids awake. We stopped at some apple farms on the way; I couldn't find any tart apples. Neal helped find some local farms online which might have tart ones at this time.

10/4/03: Day 2. The weather was against us today. We rushed off from Liz and Neal's to try to go for a ride before it rained, but we ended up doing part of the Minuteman Trail during a downpour. It started off with a slight uphill (perhaps not enough that Rich or Tom noticed, but I did) which made it difficult for me. We biked for 55 minutes (6.8 miles) and then turned around. The total time was 1 hour and 35 minutes, 13.6 miles. Tom and I met Hillary, Rich's new girlfriend: very nice. Len and Inga came to dinner (enchiladas and apple crisp). Photo.

10/5/03: Day 3. After a nice breakfast of apple pancakes and fruit, we worked on our bikes. Tom and I adjusted the brakes (we have working brakes again!) and misc. other things. Then, we biked into Cambridge (55 minutes, 8.2 miles) and had lunch with Chris (Indian buffet). Most of the ride was on residential streets, with a small part in the Charles River Recreation Area. After lunch, Rich and Tom got a tour of Harvard from Hillary while Chris and I visited for another hour. Then, we went back to Chris's home and watched the twins play. I found the ride home (75 minutes) tougher due to still being too full from lunch, biking a bit uphill with the wind blowing at us and the sun in our eyes. Between Rich and Tom, I had 3 small cylinders of oxygen but needed only 2 for the visiting part of the trip. Dinner was leftover enchiladas.

October 2003

10/6/03: Day 4. Tom, Rich and I drove 2 hours to Cape Cod and biked along part of the Cape Cod Rail Trail (20 miles, 2 hours). It was mostly flat and very nice. (Thanks for the recommendation, Dave K.) On the way back, I wanted to stop at the Ocean Spray Cranberry World exhibit in Plymouth, but it doesn't exist anymore. We didn't find this out until we got to the address and it was an office building, and not a visitor center. Even tho we were very tired, we got in 1/2 hour of canoeing on the Charles River at the end of the day; canoeing is easier for me then walking. There were some trees with color that we saw on the river, but generally the area that we have been in is still green. Photos. Dinner was gumbo.

10/7/03: Day 5. We headed to Vermont today. We made two stops on the way: one to pick up a plant from Len at his office, and another to briefly visit with Tom C. at his Dartmouth office. It was the first time I saw Tom in many years. The drive to New Hampshire (Dartmouth) had some color, but it was a bit washed out, and the green trees still dominated by far. Once we reached Crystal's place (in East Montpelier, VT), we visited for a bit. (We had never met in person; I met Crystal thru her web site; I was seeking information on pedals and fund raising back in March.) We then drove to Montpelier for a short bike ride; we did 1 hour (8 miles), some on highway, and some in Montpelier itself. Dinner was the most wonderful light lasagna and peach pie. I finally figured out why I have been having a drippy nose during biking and eating; I lost my nose hairs. In the past, I noticed the losing process, but I didn't this time.

October 7, 2003: Update from Liddy's Parents

Liddy spent three weeks in the hospital and was discharged on 30 August 2003. She began a series of 15 whole brain radiation treatments on September 4th and, due to delays in the treatments caused by low blood counts, completed them on September 26th. She began a series of 14 radiation treatments to attack the large lung mass near her heart on September 16th. These treatments ended on October 3rd. She has made an amazing recovery so far and is feeling well and back on her bicycle again (which is, of course, a very good sign). Most of her symptoms have diminished somewhat (e.g., the frequent cough) and we are cautiously hopeful that the radiation treatments have done some real damage to both the metastases in her brain and the largest and most dangerous of the tumors in her lungs. She still uses oxygen (when not biking) and is on pain medications and an anti-seizer medication, which is standard after brain surgery. She will have the next set of CAT and MRI scans done on October 14th and we will meet with her oncologist on the 16th to learn how effective the radiation and her last chemotherapy treatments have been. We’ll explore what the possible next steps are after understanding the effectiveness of the radiation treatments. She and Tom left on the 3rd for a holiday to visit various friends in the New England area and to bike in Vermont. They are due back this Saturday. In the weeks after she was released from the hospital, we had a constant stream of relatives and friends come and visit her. We are so grateful that they could come and visit. Please pray for a successful outcome of the treatments and for our family.

10/8/03: Day 6: Our day started with blueberry oatmeal and zucchini bread. Tom, Crystal and I drove about 1.5 hours to the Lake Champlain Islands and biked on some of the islands. Our ride began a bit late due to us stopping at a number of visitor centers and picking up lots of pamphlets about Vermont. I borrowed Crystal's road bike mirror and now want one. (My birthday isn't too far away; PerformanceBike has them.) Crystal and I talked bike stuff the entire drive back; it was very nice to have the opportunity to bike stuff with another person, esp. a woman.

October 2003

10/9/03: Day 7. Our day started with blueberry oatmeal. Yum. Tom visiting the 3 Montpelier, VT bookstores and bought the best yoga book ever, while Crystal and I were in the local bike shop, mostly looking at full-finger biking gloves and hats. (I misplaced my favorite hat last winter, and, with the current state of my head, I needed another.) We then drove to Stowe, VT to do some touristy things; we went on the Ben and Jerry's factory tour and went to the Cold Hollow Cider Mill and saw cider being made. We also did a short ride (5.3 miles) in Stowe on the Stowe Recreation Path, which it seems that both Crystal and I made the wrong call on. I had problems with the ride due to the ups and downs, and we thought that it was going to be more difficult to return. Tom, who thought that it would be easier to return (and he was right), went and got the car and picked us up. We then returned home, and swapped cars to drive to Crystal's sister's for a visit with her mother and a horse ride. Both Tom and I got on the horse; first time for both of us. I needed extra help getting on and off due to my bad leg not supporting weight. Tom liked it so much, he got on again. When we got home, the moon was this wonderful orange. Dinner was pizza from a very good local place. My middle-of-the-night snack was peach pie as it had been the previous few nights; details.

October 2003

10/10/03: Day 8: It was very foggy when we woke up. Crystal and I had blueberry oatmeal again for breakfast. We drove 1.5 hours to Vergennes, VT and biked the Rebel's Retreat, a 42.5 mile loop along Lake Champlain. We stopped at Yankee Kingdom Orchard and Bakery (where we bought wonderful day-old peanut-butter cookies with chocolate chips) and Vermont's Own Products (where we finally found the cycling map we had been looking for and I was given a Liberty apple, which was the best I have tasted on the trip). Crystal and I stopped at mile 40 due to it was too dark for me to continue to bike safely. Tom finished the last 2 hills (which I wouldn't have been able to do anyway) and picked us up in the car. The ride was very nice. Dinner was an amazing stuffed eggplant dish. My middle-of-the-night snack was peach pie again. Photos.

October 2003

10/11/03: Last vacation day! Breakfast was Dutch apple pancake. In searching for liberty apples, I found a farm which was on the way home advertising having liberty apples (Liberty Orchard in Brookfield, VT). Tom and I picked 2 bushels of liberty apples. Since the town is also home to a floating bridge, we went and saw it. It was a one-lane bridge which has you (and your car) down at the water level; aside from that, it seemed like a normal bridge. We drove to Ossining, NY to celebrate Dad's 63rd birthday and see Mark and Sharon and family along with the rest of the sibs. Carly, Sharon, and I were able to spend some time together beading. Photos. More photos. (Password to be added soon for photos.)

10/12/03: Breakfast was Dutch apple pancake which Carly, Mom, and I made using some of our apples. Mark and Sharon and family left soon after breakfast. We left the folk's soon after lunch to go home. So, our trip is really over now; it's time to start planning the next trip. Hopefully it will have the important elements of this trip: great weather, good biking and good visits with friends and family. Tom suggested that, due to his biking and how his body feels (his knees hurt), he should perhaps take a week off biking. I'm back to changing my pain patches every 72 hours instead of every 60 hours, so I assume I have less pain. I know that I still have some pain on the left side, at the bottom of the lung area.

10/13/03: Juan Carlos came for breakfast. Tom finally mailed the Bose system in, so hopefully, we'll soon be able to listen to CDs in the living room again. Michelle and I went out for lunch (Indian; just like we used to at Bell Labs). After lunch, we baked Rock Cakes (with adding nuts and chocolate chips). Even tho they are nice, they aren't what I had in mind; I'm looking for a dense scone/rock cake, and these are light. I needed a nap in the late afternoon. I biked a hour on the trainer (11 miles).

10/14/03: I biked 50 minutes (9+ miles) on the trainer; without the Bose system, DVD watching just isn't the same. Tom and I made a quick trip to Brooklyn to get our new glasses, and then up to Columbia for my brain MRI and my CTs of my chest, abdomen, and pelvis. Results will be gotten on Thrusday. I spoke to my radiation oncologist; just another 6 days before I stop the steroid completely (assuming no symptoms)!

10/15/03: Susanne came for breakfast, Casaundra and Ryan for lunch, and Wee Teck and Ms Yan for dinner. I signed Tom and I up for the Tour de Bronx, a 40-mile ride on Sunday in the Bronx; we did it a few years ago. I had major fatigue problems even tho I took a number of naps. Perhaps I have the "2 week after radiation fatigue" that I heard hits some people? I ended up biking for only 30 minutes (it was so hard to do that much). I did some looking around at possible chemos which I want to talk to Dr K about tomorrow, and didn't come up with anything new.

10/16/03: Scan results day! And, first the time, we got good news! And, my oncologist smiled at us! Starting with the brain... the growths are smaller or have disappeared. Brain radiation was successful! Moving to the biggest in the left lung which also received lung radiation; it is a bit smaller. In the rest of the lung mets, only two grew a bit, so the rate of growth seems to be slowing down. Might be due to the last cycle of chemo. Unfortunately, there is another growth (out of the lung) near the diaphragm and growing towards the left kidney which is growing. Dr K had a quick conversation with the radiation oncologist, and he thinks he can irradiate that one (and maybe also the two in the lung that are growing). Dr K also had lots of blood drawn for the continued research work that they are able to do on the cell lines that they were able to grow with samples from my brain; the end result might be a vaccine for me quite a bit down the road. Dr K also heard better lung sounds in the left lung and suggested that I try wean myself off of the oxygen. Tom and I used the oxygen saturation monitor that we have and found that my oxygen saturation differs by 4 (from 97% when sitting to 93% when walking). The reason for me being on the oxygen was the fact that I had a difference of 8-9 (from 97% to the high 80s) weeks ago. Since we returned from the doctor's appointment, I haven't used the oxygen; climbing the stairs was tough but the rest was okay. Fatigue was a bit better today, but I didn't bike.

October 16, 2003: Update from Liddy's Parents

Anyone reading this page will recall how bleak things looked just six short weeks ago before Liddy began her two different radiation treatments (i.e., whole brain and the radiation targeted at the largest tumor in her lungs). We learned today the results of the first scans that she has had since completing her radiation treatments: the radiation actually had a significant impact! We also happen to believe that the prayers and good wishes that you have been offering on behalf of Liddy and our family have also made an impact. The tumor near her occipital lobe has shrunk by 20% and the two lesions in her frontal lobes and various small cortical lesions are "no longer apparent." There was no evidence of new lesions or abnormal enhancements in the brain. Similarly, the large tumor in her left lung also appears to have stopped growing. We certainly hope these are permanent effects. However, the scans showed there are additional problem areas. The two larger lesions in her right lung, both of which had shrunk prior to her brain surgery, have now re-grown to their original size. Also, a lesion, which was first noticed in June located outside the lung near the diaphragm, is growing toward her left kidney. It is now quite large (approximately 10 cm). She will be meeting with the radiation oncologist on 27 October to determine if targeted radiation can be used for this tumor (and perhaps the other two in the lung as well). Additionally, her oncologist will decide whether or not she will recommend that Liddy have chemotherapy in conjunction with the radiation treatments (if they can be done). Again, we seek your prayers for Liddy and our family and we thank you for all of your efforts in the past. We are cautiously optimistic and hopeful.

10/17/03: John from HP Labs is visiting for the weekend. I had a visit from a respiratory therapist to see if I could use a Helio system, which is a liquid oxygen system (portable, base unit). I can. The portable system is so light, and so cute! We will get ours delivered on Monday. I biked for an hour on my trainer.

10/18/03: I haven't been having pain problems due to the patch that I'm on, but last night was pretty bad. John and looked at each other's pictures in the am, and I took a nap after lunch. The nap enabled me to make it thru dinner and beyond!

Details on Pain: Over the last few days, I have had some low-grade pain. Last night, it increased to full-blown pain. At 3am, we put another patch on, and applied the the heating pad, and I "rested" for a number of hours. I wasn't quite asleep, but I wasn't all there either. Once 7am rolled around, I still didn't feel like moving too much (the main pain is on the left side at the bottom of the rib cage, both in the front and the back). Tom gave me one of the "breakthru meds" (hydromorphone) and I got up. The hydromorphone makes me feel dopey a bit, which greatly decreased my desire to leave the house.

Details on Fatigue: The fatigue that I have been feeling I thought had to be commented on. Normally, at the beginning of dinner, I start to feel that I'm on a boat/ship and that the world is moving. Half way thru dinner, I have problems concentrating on conversation because all I really want to do is lie down. By the end of dinner, I'm having problems eating due to my lack of interest in it. Tom says that my eyes get droopy, I get spacey-looking, and I stop talking. And, I am so tired that I need help to change out of my clothes. Within minutes of lying down, I'm asleep. Of course, due to Decadron, I'm awake within 3 hours, feeling very wired.

Details on Sleeping: I don't remember if I have mentioned it explicitly in my journal, but the Decadron gives me a wired feeling and since getting out of the hospital, I have been awake 3-4 hours in the middle of the night. In fact, that is when I have been handling most of my email and writing in my journal. This wired feeling wasn't a side effect that was mentioned; we only learned that it was one due to someone in Mom's support group. I would wake up, having to go to the toilet. In getting back into bed, after 10 minutes or so, I would be convinced that I wasn't going back to sleep anytime soon. So, I would always start with, "So, what do I want to think about now?" and quickly move to the "Where is my laptop?" phase since the lack of sleepiness has a strong "Let's conquer the world" component.

10/19/03: Due to the current state of my fatigue, I'm not comfortable with the idea of doing a longer "scheduled" bike ride, so we won't be doing the Tour de Bronx. But, we do recommend it to others. Instead, we drove down to see Bruce and Sarah at their NJ shore house. Jeff, Leanne, and Zack arrived for a couple of days, starting with dinner this evening.

10/20/03: Fatigue. Nap after breakfast. Nap before lunch. Desire to fall asleep even when I'm in the car just to go to the Salvation Army which is 5 minutes away. (Leanne wanted to look at tops; Jeff wanted to go for a walk with Zack, and I'm always into thrift-store shopping. Part of the liquid oxygen system was delivered; they didn't have one of the parts, so we don't have a working system yet. Nap while dinner is cooking. Dinner was gumbo. I hope the fatigue lifts some while Tom and I are in PA visiting Mark and Sharon and family. We planned on going kayaking, biking, and other activities, but it might be hanging out in bed for me. I slept thru the night (no Decadron-wired-up-in-the-middle of the night).

10/21/03: We left for PA in the morning soon after dropping Jeff, Leanne and Zack at the airport. The drive took longer than we thought it would. We got to Mark's place with a bit of time before dinner, long enough for Carly and I to compare beads and Tom and Evan to build weird flying things with Legos. Dinner was Indian; Mark had been cooking since 1. I slept thru the night except for the toilet.

10/22/03: Tom thinks that some of the fatigue might be me needing oxygen, so I'm back to being on oxygen around the house. We'll see of the fatigue decreases. Too cold for biking (high of 43 degrees). We had a slow morning, with me visiting first with Sharon, and then with Mark (while he was on the exercise bike) after the kids left for school. Then, Mark, Tom and I did a bit of shopping. We dropped Mark off, and went to a bike store. I was asking about price of changing my bike's double crank to a triple crank, which will allow me to bike on slightly steeper hills. $500+ in parts; $50 in labor. The bike store guys presented another solution; swap out the rear cog set with a mountain bike rear cog set; Crystal already suggested this. $125 in parts; $35 in labor. We returned home for lunch and nap. Sharon and the kids got home in the middle of the nap; once I got up, Carly and I beaded for a while. Then, we enjoyed Evan's fencing lesson. Home for dinner of left-over gumbo and a wonderfully juicy peach crisp. I slept thru the night.

10/23/03: Another day which is too cold (with the clothes that I packed) for us to go biking. It's a day off of school for the kids, so we had lunch while watching the movie Holes. Sharon, Carly, and I went to a craft store, where we looked at the bead section. Sharon and I went to Carly's violin lesson. Dinner was home macaroni and cheese and pumpkin pie. Seems like I will continue to sleep thru the night, so I won't comment on it anymore.

10/24/03: Mark, Tom and I went on a tour of the Cannondale factory in Bedford; the virtual tour captures a lot of what we saw. Our tour started with the painted, welded frames. The sun is out a bit, so Tom and Mark went for a ride. I was too tired, and napped instead. Once they got home, I rode Mark's recumbent bike for 45 minutes. It's not like a normal bike; I needed oxygen. Korean take-out for dinner and ice-cream for dessert. Movie: The Italian Job. Additional articles have recently been published on the efforts of us during the Danish Bike Tour.

10/25/03: We drove home today; we left Mark's at 10:30am and got home at 9:30pm. We stopped for lunch, at a Performance bike store where we bought a new bike rack which holds the bikes in particular places so that they don't bang on each other, and at my friend's Tom's house where we visited with him and his family for an hour or so.

October 2003

10/26/03: Barbara, a suitemate from undergrad, came for lunch today; I made beans and rice, which is the dish that she said that I lived on the year that we lived together (my last year at SUNY Stony Brook). Photo. The rest of the day was filled with naps, washing clothes, and a short ride on my trainer (25 minutes). I found the ride depressing due to needing oxygen. Aside from the last ride that I did on Mark's exercise bike, this was the first ride on my trainer for which I needed oxygen. Tom and I had an honest conversation about the amount of pain I have been in the past week; it has been increasing to the point that I have constant pain with 2 patches if I'm not in a good physical position (e.g., sitting at an angle is bad).

10/27/03: We saw the radiation oncologist. He looked at the CT films (with us) and said that he can use the 3D conformal mapping to irradiate the mass by the left kidney (the upper left abdomen). Since we got to see the films, we also found that we were wrong in what we thought the shape of the mass is: it is approximately 6x8x8cm. There is no organ involvement, but the mass has pushed the left kidney over a number of cm out of the way, and my spleen is now on along my back instead of in the front of my body. I got part of the simulation out of the way; another mold was made for my head and arms, x-rays were taken, and I had the planning CT. I also spoke with my medical oncologist to see what she suggests wrt the pain: put another patch on. She wants to find out from the planning CT if the right lobe growths are growing; if they have grown quickly, then she will encourage us to start chemo again sooner verses later.

10/28/03: 3 patches is better than 2. But, I still have to be careful about my posture; the pain will start up quickly if I'm not sitting or lying a certain way. I processed some paperwork today, spoke with the insurance company many times, and biked for an hour. I still needed oxygen while biking, but the ride felt much better than yesterday's ride did. Tom and I tested my oxygen saturation again; there was a 10 point difference between biking and resting with no supplemental oxygen. (In the past, there was no difference; wish I knew what changed.) My fatigue level seems to have improved a bit.

10/29/03: 4 patches must be better than 3! (I still had pain with 3.) The two oncologists talked and decided that due to the possible side effects the radiation might cause (vomiting, nausea, constipation, loose stools), we should hold off on chemo until I'm done with the radiation. I biked for 40 minutes. Juan Carlos came to dinner; baked chicken.

10/30/03: Even with 4 patches, I still have to be careful with my body positioning or I have pain. My appetite is gone; it might be due to the pain meds that I have been taking. I welcome it; I was uncomfortable with the increased steroid hunger that I had for the previous 2 months. Maybe I can lose some of the 8+ steroid pounds. Tom took me on my first 2 outings with the Helio unit; it is much easier to carry than the small oxygen tank. We went shopping for picture frames and we met Susanne for dinner at Amanda's Restaurant in Hoboken. After an hour, I got to be really uncomfortable.

10/31/03: A couple of friends asked about the different oxygen systems; here's my current comparison. There are a number of differences between the two systems. The following is the list that I have learned as on 10/31/03.

  • Due to the weight of the base unit when full (170+ lb), we keep it in the garage. Which means, if I want to use the Helio in the house, 2-3 times a day, someone (i.e., Tom) has to go to the garage to fill the tank. Filling it takes less than a minute tho.
  • Due to the weight of the portable unit, I have a much easier time getting in and out of the car.
  • Unfortunately, the portable Helio unit drains in 8-10 hours even if you don't use it.
  • There doesn't seem to be a way to hook up water to the Helio unit. But, after using it for a couple of days, it is not clear that I will need water.
  • The Helio is louder to me, yet quieter than the non-liquid base station to others.
  • If the nose becomes stuffed up, the Helio unit stops working if it was working with the nostril that is stuffed up. (The Helio only gives oxygen to one nostril at a time, and it is hard-wired.)

I had an afternoon appointment back at the radiation center for x-rays. They had to give me new tattoos since I have lost water weight (due to stopping the steroid weeks ago) since they tattooed them on Monday. I will have 14-15 treatments.

11/1/03: Juan Carlos came to breakfast; my appetite still hadn't returned, so I mostly visited while he and Tom ate. It was a sleepy sort of day: I would be up for a few hours, and then down for a few hours.

11/2/03: I think I feel a bit less pain with the current 100 mg patch. Jon and his friend Tim will be staying with us for a few day while Jon shows Tim NYC. The 4 of us went out for breakfast; everyone else took too long eating. The back pain kicks in when we lingered at the table. So, I was a bit concerned about our afternoon plans which was for Daniel, Tom, and I to go to Ms. Yan's. Ms. Yan and I were going to visit while Tom and Daniel played pool. And, we were going to make a cake from a box since Ms. Yan thought she was doing something wrong. Luckily, Tom packed my heating pad, so not only was I comfortable, but I even took an unplanned nap. Tom baked the cake with Ms. Yan. A very nice visit.

11/3/03: Another set of x-rays and my first abdomen treatment. I wore a sports bra, and didn't have to change into a gown. My tattoos are in the mid rib area, so my mid-section is what the techs have to see. Since I missed my early morning nap and early afternoon nap, my afternoon nap was 3+ hours. And, the evening hours after that felt that it was the middle of the night.

11/4/03: My radiation appointment was at 7am; we were home by 8:30. Tom worked in the basement apartment in the am while I napped. I napped in the early afternoon. Hein came by to visit at 6pm; we ordered pizza for dinner. I also napped during his visit.

11/5/03: Jon and Tim left; we didn't visit much due to their meal/friend schedule and my sleeping schedule. Since it is Wed, I have my weekly appointment with the radiation oncologist. He thinks the increased pain is due to the tumor swelling as the radiation works. He suggested trying out 4 or 8 mg of Decadron for 3-4 days to see if that helps. I would need to be on it for only a week or so; after that, there should be shrinking, and not swelling. He felt that my continued fatigue (which began around Oct 13) is probably part of the delayed fatigue due to the whole brain radiation, which is normally over within 3-4 weeks. He doesn't want me to use the heating pad (which I have been using 10+ hours per day) since the area that I would want to use it on would is where he is irradiating, and the skin is sensitive. Bruce and I went to a Bach Concert at Avery Fisher Hall in the Lincoln Center. Very enjoyable.

11/6/03: My radiation appointment is at 7am, so hopefully, we'll be in and out. Tom will be painting in the basement apartment. Peter W. from Bell Labs visited in the early afternoon. Mom came also and helped me will pack for the Chicago weekend; I leave tomorrow right after radiation. Plus, we processed 18-20 of my wonderful Liberty apples, preparing them for the freezer. Another tumor statement from Julie. Dear Tumors in Liddy's body: Since the co-existence continues to be; it is requested that your presence will not be felt starting on 11/7-11/15. Your cooperation is greatly appreciated with this latest request!

11/7/03: Susanne dropped me off for radiation, and the folks picked me up. We still make it to the airport more than 1.5 hours ahead of time and caught a much earlier flight. I flew without oxygen since the airline wanted $100 per segment to supply oxygen, and I wasn't allowed to bring my own. Flying without oxygen wasn't that bad; from the airplane, I immediately got on a wheelchair, so I didn't have to walk by myself. We had a nice tasting lunch of two different soups that Aunt Donna made, and a nice dinner of enchiladas made by Kim. We got to see Brandon, Kim, and their kids, and Kim, Patrick, and their kids. Apple pie for dessert.

11/8/03: Mary Jo and her two daughters came to visit for a couple of hours. Two naps later... A party of 9 of us met for an early dinner at a Cuban restaurant of a friend of Aunt Donna's.

11/9/03: Kim came to visit for a couple of hours while Will, Aunt Donna, Mom and Dad went to mass. One nap later... many of us met up at Mary Jo's where Bill fried breaded fresh lake perch. Another nap later, and I had Happy Birthday being song to me. I visited with Mary Jo until my oxygen ran out on me. Photos to appear soon.

11/10/03: Kim came to say goodbye at 6:30am this morning. We made it on an earlier flight than planned. I had a princess-with-the-pea moment where something very small was causing a large discomfort in my back. I was able to receive an earlier radiation treatment and make it home by 2:30pm. Tom made a nice dinner of Black Beans and Rice.

11/11/03: I'm still having princess moments; I think that there is a pea in my radiation brace/support. I felt pain the majority of yesterday... not a very nice day. Tom and I ate our meals in bed.

11/12/03: It's my birthday today. The radiation oncologist wants me to up the Decadron again to see if this helps the pain (assuming the pain is due to tumor swelling). Or, another option would be that the tumor isn't responding to the radiation, and it is growing. Or, it is just taking a long time to respond to the treatment; perhaps I'm a little slow? Or, the 4th option, we will have to handle the pain using the standard pain meds. I spoke with my medical oncologist, and she feels the right approach is standard pain meds. So, I have doubled the patch again. (It feels a bit weird, not having an idea on whether my current dose is a high dose or not.) I had a support group meeting this evening; Juan Carlos took us out for burgers afterwards.

11/13/03: Everyday this week, I got this pea sensation right after radiation treatment which wouldn't go away. Today, I was able to sleep it away!

11/15/03: Julie's and my birthday party day! Using many metrics, the party was a success! I mostly talked to friends and family in my bedroom due to back pain; hopefully, others were comfortable with that. (I'm used to entertaining in my bedroom now.) Towards the end of the evening, there were still too many people with whom I hadn't spoken to, so I had one of my pain med lollipops and went into the living room to visit with more people. It seemed to work well.

11/17/03: No pea!! This is the first day in over a week that I didn't have a pea sensation after radiation. My theory is that we have a big enough patch dosage now. I biked (for the first time in a long time) for 45 minutes on my trainer. Mom came for dinner and will stay a few days. Juan Carlos came for dinner.

11/18/03: Mom brought me in for radiation, but the "computer was down" so I was told to come back the next day. It was really difficult finding foods that I was interested in eating and that didn't burn after swallowing them. (Even water bothered me.) Mom cleaned a bit of my house while I slept and Tom worked on a house project.

11/19/03: Mom brought me in for radiation; I also had my weekly meeting with the radiation oncologist. He had a theory as to why I have pain when drinking/eating: thrush in the lower part of the throat. Of course, it is pretty rare to only get thrush only in the lower part. My pea came back in the afternoon. Mom left for home during my mid-morning nap.

11/20/03: 2nd-to-last radiation treatment! It went okay, but my pea came back. So, I spent the day in bed, reading the classified ads. I'm looking for hybrids for Matt and Liz, and a light-weight cycle-cross for me. Anyone else out there interested in me finding "good" ads for used bikes? Lisa came over and cooked Unstuffed Cabbage for us. (Recipe to be added soon.) I got email from my oncologist, stating that I will probably have fatigue for a number of additional weeks. So, my entries might become more dull as my waking part of the day is shorter.

11/21/03: Last radiation treatment. [See Introspectives Along the Way page 11.]

11/22/03: Wee Teck and Ms Yan visited; they brought dim sum. Wonderful. We watched the Michigan football game (Ms Yan and I napped during most of it) and a movie (Shipping News). My cold is now a week old, and doesn't show any signs of lightening. (Being able to watch a movie is a new thing.)

11/23/03: Quiet day. I worked on the family recipes. We watched a movie (The Mothman Prophecies).

11/24/03: A quiet day. I am still having pea problems, but the amount of pain doesn't seem enough to want to take more pain meds until I am less fatigued.

11/25/03: It is Tom's and my wedding anniversary. We completely forgot; Mom and Dad reminded us with a call this am and an offer to sing for us. Kit came for a visit and stayed on for dinner and a movie. Hein and Daniel came for dinner and a movie. We watched Finding Nemo. I lost all of my dinner; this is the 2nd or 3rd time that I have lost a meal soon after eating it in the last 5 days; it is esp. bothersome since I don't have my appetite back and every spoonful that crosses my lips is forced. I added photos of the party to the web page.

11/27/03: We had Thanksgiving dinner with Bruce and Sarah. Tom then went into his mother's and I went home with my folks. We thought that it would be better if we delayed my visit to his mom's until we have my pain back under control. It hurts on the right side of my body for the first time.

11/28/03: Tom and his mom fought the crowds by doing a bit of shopping on the day after Thanksgiving; he got to the folks at 4:30. Liz B. came to visit for a few hours around noon. Karen and Matt and Lukas came to dinner (at the folks; Cajun-stuffed chicken, roasted potatoes, and asparagus) and we watched a movie (Whale Rider).

October 2003

11/29/03: Mom and I processed the pictures from our trip to Chicago a few weeks ago. Tom and I drove back home.

11/30/03: Tom finished fixing the skylight; I worked more on the Liddy Shriver Sarcoma Iniative web set.

12/1/03: I had the brain MRI and CT scans done today. Tiring morning. I spoke with my doctor; we are increasing the pain meds again and going back on Decadron to help with the vomiting. Juan Carlos came for dinner. We have fewer and fewer leftovers in the frig.

12/2/03: I had a pretty good day. Awake most of it. No vomiting; first time I can say that in over a week.

12/3/03: I had a long day. While Tom and Dad straightened their garage, Liddy and Mom did some on-line window shopping. The holidays are at the wrong time this year.

12/4/03: We met with my oncologist to learn the news of my latest scans. The results were not good. (I wasn't surprised due to my increased pain.) Dad can say it much better than I can. The drugs that I'm now taking are Keppra (anti-seizure), Decadron (for nausea, vomiting, and brain swelling), Avian (complements the Decadron), Fentanyl Patch (for pain management), Colace (to encourage loose stools). The pain management specialist recommended Provigil to make me more awake, but Dr. K. thought this wasn't needed at this time.

December 5, 2003: News from Liddy's Dad

We (Liddy, Tom, Bev and I) met with Liddy’s oncologist yesterday to learn the news of her latest scans. The results were not good. In fact, the results were much worse that anything we expected. Given how the whole brain radiation had an initial effect on the tumors in her brain and how the lung radiation had an initial effect on the large tumor in her left lung, we had high hopes that it would have an effect on the tumor external to her lungs in her abdomen. Unfortunately, it did not. Moreover, our use of the phrase "initial effect" is important because we learned that the effect was not long lasting. She now has more tumors in her lungs, some of which have grown dramatically in the past 4-weeks. She now has more tumors in her brain, all of which are growing. The tumor outside of her lungs is growing. This disease is relentless as it aggressively claims more of her body and mind. She has been extremely fatigued the last several weeks and has been in a lot of pain whenever she moves. She is on pain medications in an attempt to control the pain. She finds it difficult to walk and sit comfortably. She spends almost all of her time in her bed. Her daily vomiting seems to be under control due to the steroids she is taking to reduce the edema around the largest of the tumors in the occipital region of the brain. She is once again having problems finding words and putting sentences together and the shakiness in her writing has reappeared. Please keep her and our family in your prayers. We need them now more than ever.

12/6/03: I am also taking methadone (for pain management, which also has a sedating effect). Dad bought me 10 tulips. Lots of snow too.

12/8/03: Tom and I will be staying at the folks for awhile. I'm finding verbal communication more difficult. I'm also finding typing more difficult so my responses to any e-mails might be shorter and slower. Mom is helping me with my typing. Bruce and Isabel came for a visit today. Tomorrow is Isabel's 5th birthday. Matt spent the afternoon and evening with us yesterday. I have been walking up stairs slowly lately and the folk's house has lots of stairs. I feel like Mile's, my oldest brother's, child who still walks on his knees when there are stairs.

12/9/03: The social worker and home hospice nurse came. We signed up. Unless something else comes up treatment wise, I will die soon; the cancer is too aggressive and fast. The one possible option seems not that good of an option anymore.

12/11/03: Modified ninth introspective. [See Introspectives Along the Way page 12.]. But, there isn't much pain. 6 on the 10-point scale normally. And, my appetite has mostly returned.

12/12/03: I feel so unorganized now. I don't know why; perhaps it is that I'm am trying to get the holiday stuff together (I have my large recipe project which I seem to spend more time thinking about the binders and not inputting recipes), and feeling a bit out of touch with not being home. The holidays are soon, and I'm not ready... I feel like I want to do all of these things (make cookies, mail cards, go shopping) but there is no time. No time. A few days ago, I was seeing hallucinations (mostly cats that didn't exist as they walk by), but nothing lately.

12/13/03: Think things are starting to be a little settled now... I'm ready to communicate with friends now, etc. Juan Carlos and Susanne came for brunch. The conversations with JC were light enough to be comfortable, but I managed to get upset with some of the others. Aunt Donna Lee is in for the weekend. We watched a movie (Shine). I found the movie troublesome/bothersome, perhaps due to what I am going thru myself.

On the practical side, I have a walker to help with things like brushing my teeth so that I don't have to hold onto the bathroom sink, but I haven't tried it yet. The wobbliness that was bothering me isn't there as much, so the fear of falling is reduced.

I still feel very tired, but there is a fear of not being able to sleep... unrelated, we spoke with Mark and found out that he and his family plan to come for a weekend visit before xmas. This will hopefully mean xmas eve dessert twice!

12/15/03: Liz came to visit; we had a nice time beading, having dinner and discussing anxiety. I have been having some anxiety problems, and being able to talk about them and get ideas about them was nice. For example, Liz groups the states of the US in some order. Or she concentrates on her breathing.

12/16/03: Michelle and PJ came for lunch and stayed for dinner. Modified ninth introspective. [See Introspectives Along the Way page 12.]

Me, Mom and my Auntie (Eva Mae, my Mom's sister)

12/19-20/03: Mark and his family arrived today for a quick visit. Daniel got in by ferry. Tom and I, due to being tired and the kid noise level, missed the gift opening, but we will get to see the smaller kids (Bruce's and Matt's) opening gifts at xmas time, and that will be nice.

12/21/03: No visitors today. I'm feeling somewhat good. I'm rather tired during the days, but there is less pain.

12/22/03: Joe and Bethany and Joseph visited today. We are looking forward to seeing Joseph; hopefully, he won't be too shy with playing with the toys that Mom has gathered together for this function.

12/26/03: Many of you who read this journal have written me asking me how I feel. This is something that I seem to have problems with ("this" = questions). I want you to know that the meds (usually) have everything under control and I’m not in much pain. Just as importantly, I want you to know that I am at peace. My Dad has posted an update today; please see it (below).

December 26, 2003: Update from Liddy's Parents

Liddy is taking several medications. Some are for pain caused by the tumors growing in and external to her lungs. Some are to reduce the swelling of the tumors in her brain and thus the side effects these tumors can cause. Some are to make her less anxious. In case the pain becomes quite intense, she also takes a "break through" medication. Unfortunately, this happened on the 23rd and it took hours to adjust her medications to get her back "on top of the pain." She gets apprehensive and anxious from time to time and doesn’t like to be left alone. During these times, she likes someone to read to her. The sound of someone’s voice seems to calm her and make her more relaxed. She finds it relaxing to work with her "beading," making necklaces and such for family and friends and she also finds it relaxing to have soothing music playing softly in the background. She is having trouble finding words and making completely formulated sentences; even answering simple questions—whether they are from a visitor, via e-mail, or on the phone—becomes a source of frustration. If you call or write to her, please don’t ask questions like, "How are you feeling" or "What is your next project?" or "Where are you going on your next bike ride?" Use declarative sentences, rather than questions. In your own words, say something like, "Liddy, I’m so glad to talk with you. I enjoy your company and I’m here to be with you. I’d like to read something to you." Don’t be disappointed if she says, "Not right now." She knows you wanted to show her some special love and attention. But, just knowing you wanted to do this is sufficient. She is often very sensitive to touch, particularly on her back. She can be sensitive to movement, particularly the movement of her mattress and/or bed. And, sometimes she finds it difficult to deal normal household noise, such as people engaged in conversation around the dinner table. The shakiness in her writing has reappeared as has the low volume level of her speech. It takes her a while each morning to become acclimated to her surrounding and to find a position to get comfortable. She started hospice care in our home about two weeks ago. The social worker, the visiting nurse, and the lay minister have each, in their own way, been of help to all of us with their sensitive, caring visits. Because Liddy has bounced back so many times from such perilous places in this journey with her cancer and because, when she feels up to it, she is still actively involved in conversation, asking questions, working on projects (such as her recipe book project), we hope and pray that all of this will pass. But, right now, we need your prayers for her, Tom, and our family. We are in your debt for these prayers. We take each day, for what it is, a gift.

12/27/03: Today was a very good day. I don't understand why I some days are good days and others can be so bad. Rich, Daniel, Wee Teck, and Ms. Yan visited us at the folks. Rich brought enchiladas and Wee Teck brought Chinatown favorites. We watched a movie (T3).

12/30/03: Liz visited. Very nice. She read to me some Harry Potter from the second book.

1/1/04: I watched a number of Alias episodes (Alias, Season 1). I was so inspired that I got on the exercise bike for a while. I'm not sure how long; I will time it next time. This was the first time since the bad scan results. Matt and Karen and Lukas came to dinner.

1/2/04: Mom and Dad are both feeling under the weather. Auntie and Tom are going to have to take care of all of us, Grandma Connell included.

Me and Dr. Keohan, my oncologist, on my bed on Sunday the 4th

1/8/04: I’ve had quite a bit of fluid in my lungs recently and sometimes it has been very difficult for me to breath. Friday, Saturday and Sunday were not very good days. I had difficulty breathing and bringing up mucus. This made me both apprehensive and afraid. I needed someone to be with me during these times. Dr. Keohan visited Sunday evening and gave me a prescription to reduce the fluid and she suggested I start Nebulizer treatments, this is where I inhale a spray made from a couple of drugs for about 20-minutes. I’m feeling a bit better, but am very tired and can’t move about easily, so I’ve tried to find a few comfortable positions in my bed, where I spend most of the time. I’ve found it relaxing to listen to soft music in the background and to do some beading. For a while I wasn’t eating very much at all, but now I am taking in some fluids and things that I like—for example cold peaches and Greek Lemon Soup. I don’t know where I am on this journey with Ewing’s, but I know I am not at the end. [Liddy asked me to make an entry on her journal page for her. As I composed it, I read it to her so she could edit it. She nodded her agreement to what you have just read when it was completed. Bruce, Liddy's dad.]

January 14, 2004: Update from Liddy's Parents

Liddy and Tom have been living with us since shortly after Thanksgiving. Those of you who read this journal know that she is in hospice care now. Over the past several days, she has become less and less active, sleeping a great deal and only taking in some crushed ice ships and pureed peaches. She has stopped responding to us, except for some very few words each day. We believe she is entering the last stage of her journey with this disease. We’re making her as comfortable as we can, talking to her, stroking her, and telling her (among other things) how much she is loved and admired.

January 15, 2004: Update from Liddy's Family

Liddy took her final steps on her journey with Ewing’s sarcoma today at 11:15 AM. No more pain. No more labored breathing. No more trembling hands and wobbliness. No more auras. She is at rest and at peace. A copy of the obituary that will be printed in the local newspaper follows:

Elizabeth Anne Marie Shriver, known to her family and friends as "Liddy," died on Jan. 15, 2004 after a 22-month battle with Ewing’s sarcoma.

She was born November 12, 1966 in East Los Angeles, CA to Bruce and Beverly Shriver, who live in Ossining, NY. Liddy is survived by her husband Tom Swartz, her parents, and her three brothers Bruce, Jr., Mark, Matthew and their families. Liddy resided with Tom in Jersey City, NJ.

She was a graduate of SUNY/Stony Brook (BS), Brown University (MS) and NYU (PhD). She worked at Lucent’s Bell Labs in New Jersey after graduating from NYU. Liddy was an avid cyclist and during her bout with cancer she inspired many patients and caregivers with her online journal and her bike tours.

Visiting will be on Sunday (Jan. 18) from 2-4 PM and from 6-9 PM at the Edward Carter Funeral Home, 41 Grand St, Croton-on-Hudson, NY (914) 737-0900. A Funeral Mass will be held at 10:30 AM on Monday (Jan. 19) at Holy Name of Mary Church, 110 Grand Street, Croton-on-Hudson, NY. Later this spring, a graveside ceremony will be held at St. Augustine Cemetery in Ossining, NY and a memorial service will take place at Liberty State Park in New Jersey, where Liddy and Tom frequently biked.

In lieu of flowers, the family requests that you make a donation to the Liddy Shriver Sarcoma Initiative, a non-profit charitable entity for those dealing with sarcoma. Your check must be made out to "FJC" and the memo line must read "Liddy Shriver Sarcoma Initiative." Please send the check to FJC, 520 Eight Avenue, 20th Floor, New York, NY 10018.

Bruce, Bev and Tom