Wendy's Story

Wendy, Osteosarcoma Survivor

Wendy was 24 when she was diagnosed with osteosarcoma at the tibia in 2011. She had two lung surgeries, limb salvage surgery and chemotherapy.

My name is Wendy and I am a survivor of osteosarcoma. I was a normal, healthy 23-year-old who stayed active by taking walks and working out from time to time. I hung out with friends, went clubbing, worked full-time in an office, and did something fun once a year like going on a cruise or to a theme park.

In March of 2011 I had excruciating pain in my left leg one day. I limped around and thought maybe I had slept wrong or something. For the next couple of months I noticed my leg would ache sometimes and I wasn't sure why. I began taking Ibuprofen almost daily and thought I should finally see an orthopedic doctor. I thought it was just going to be tendonitis or something minor, but I was wrong.

The doctor noticed my left calf muscle was larger than the right one and he felt it and said there was something in there. His guess was either a hematoma or, at the absolute worst, osteosarcoma. I had an MRI a few days later, and the doctor called me up eight hours after the MRI and told me "the mass had a funny look to it" and he was sending me to an oncology specialist in Tampa. The word "mass" caught me off guard. I just kept calm and decided that I wasn't going to worry about it...I was just going to let my family, friends, and co-workers know so they would pray for me.

The oncology specialist reviewed my MRI films and told me it was cancer, possibly osteosarcoma or Ewing's sarcoma. He did a biopsy the next week and confirmed it was osteosarcoma, but sent the biopsy slides off to Mayo, then from Mayo they were sent to M.D. Anderson. While I was waiting for the final biopsy report to come in, I celebrated my 24th birthday.

I went to two orthopedic doctors, then to two different oncologists and finally ended up at Moffitt Cancer Center. They have a Sarcoma Clinic and they referred me to a local Children's Hospital where my parents and I met with a team of doctors, nurses, a social worker, and a psychologist. The next few days I had all my scans re-done, since it had almost been a month since the previous scans, and the new ones showed that the tumor had grown another 2-3 cm. It was a total of four inches long in my left calf muscle. The doctor said there was also a small 8 mm nodule in my left lung, though he wasn't sure if it was anything to worry about. He said he was going to keep an eye on it during my treatment. After my scans were re-done, I had surgery to insert my port and started chemo all in the same day.

Treatment

Chemo and Lung Surgery

I was on three different chemos at first: Adriamycin, Cisplatin, and Methotrexate. After a few months of being on those chemos, I had my scans re-done and the nodule in my lungs was unchanged. It was week 11 of treatment...surgery time. Since the nodule was still there, the doctor feared it was cancer and said most places wouldn't be concerned since it was under a centimeter in size, but he wanted it removed. I had a thoracotomy of my left lung on September 19, 2011. I had three small lumps removed and two of them were benign, but the one they suspected turned out to be cancerous. I had a chest tube for a couple of days and spent that time in the PICU.

Limb Sparing Surgery

Nine days after the thoracotomy, my mom and I headed up to Moffitt (a two-hour drive) and I had my limb salvage surgery on my left leg. In pre-op, I was told the most recent MRI scans showed the tumor involved two out of three of my major blood vessels from the knee down. They told me they were most likely removing both of those blood vessels which would leave me with the one, and they didn't think that'd be sufficient blood flow for my leg and foot. I signed a waiver for them to amputate my leg if necessary.

I was expecting to have no leg when I woke up, but it was still there...and hurting really bad! They ended up removing most of my tibia and replacing it with cadaver bone. There are metal brackets on either side of the bone that are screwed into what is left of my tibia to hold the cadaver bone in place. Fortunately, they did not have to do a knee replacement, but they have the metal right under my knee. They tested the tumor death rate after my surgery and I was expecting it to be significant--at least over 90%. It was only 20% dead when they removed it, which meant they were going to add 2 more chemos to my regimen and I was going to have to do more treatments.

More Chemotherapy

A month or so after my limb salvage surgery I started chemo again. The new chemos that were added were Etoposide and Ifosfamide. I spent 2-6 days in the hospital per chemo treatment, depending on what I was doing. I ended up having an exploratory thoracotomy on my right lung on 11-30-11, just two months after my other major surgeries. The surgeon found no lumps, thankfully.

I continued chemo treatments for the next several months and finally ended in July of 2012 after multiple blood and platelet transfusions, just over 20 treatments total, and a combined total of four months spent in the hospital. Moffitt assured me that I wouldn't be working at all through the horrible chemo treatments, but I managed to work a total of 320 hours throughout that year which is a total of two months of work time. I was on a few different nausea medications during treatments and only got sick a few times throughout the year. I ended up gaining 30 pounds during the year from the Decadron (Prednasone family steroid) and from being laid up for 10 months in a bed or recliner with very little exercise due to my leg surgery. I was taking close to 16 pills a day and absolutely hated it.

I handled the first six months of treatment pretty well - I was being as strong as possible and stayed positive. I had God, my family, and my friends. I was in a relationship also, and my partner helped me so much. It was long distance, so it was hard. As time progressed it was harder to be the cheerful, silly, upbeat person that I was and I began feeling depressed. I didn't want to really talk to anyone, not even my partner. I really did handle everything well as I went through the treatments and surgeries, but you get to a point towards the end where you just want it to be over. I broke down a lot with my parents and found myself extremely lonely in the hospital when they would leave or when my partner would leave after spending the weekend with me there. It was very lonely spending week days in the hospital since everyone had to work, but most of my treatments were during the weekend. I did my best to use my faith and humor to cope with everything that was going on, but I had my bad days. My mood and lack of communication lost me my relationship with my partner, though there were more factors involved. My true friends stuck by my side, and my family was always there for me through the good days and the bad. I was extremely blessed to have the love of all of those people through my horrible year.

Recovery

I was able to use a walker right after surgery, but I had to start out small with weight bearing exercise and eventually worked my way up to full weight bearing after several months of physical therapy. About a year after my surgery, I was finally able to walk on my own, something I never thought I'd be able to do again. I was able to walk around my office and home, but I couldn't go too far.

I have experienced a lot of pain since my biopsy, but mainly after my limb salvage surgery. My knee and ankle are the two key areas that hurt. I think the muscles, tendons, blood vessels, nerves, and everything else affected by the limb salvage surgery are trying to make up for what was removed. I have been using a shower chair every day since my limb salvage surgery - I still don't trust myself enough to stand in the shower on my own.

I have been cancer-free for six months now and get CT scans of my lungs and left leg every three months. I began working full-time about a month after I finished chemo, and I had a really hard time mentally adjusting to the real world. I found myself feeling very irritable, unable to focus, depressed, and angry. My psychologist told me I had "adjustment disorder." I never knew that existed, but it made sense. Slowly, I have been feeling better mentally. I still hurt every day physically though.

Life Now

Life Now! Wendy in Hawaii on her 'End of Chemo Trip'My pain is not as bad as it was after surgery or while on chemo, but it is still constant and bad. I was taking three 20 mg Oxycontin/day for several months after surgery until I finished chemo. Once I was done with chemo, I immediately weened down to one 20 mg Oxycontin/day thinking that my pain would calm down some. Since I have been able to walk on my own, I have taken my pain pill and four Ibuprofen every morning and by 1 or 2 pm I take four more Ibuprofen. My leg swells up every day (mainly my ankle) since I only have the one blood vessel. I'm about to see a pain management specialist to see what other options I have besides medicine--maybe a tens unit or nerve block. I'll try anything at this point.

Other than the pain in my leg and my physical changes, (scars, stretch marks, weight gain, etc) I'd say my life is mostly back to "normal," though I don't think you ever really have a normal after something like this happens to you. I work full-time, hang out with friends from time to time, and sleep. I still feel tired, mainly in the mornings. I wake up feeling like I have way too much to do and not enough energy, but I just make myself get up and go to work, then I start to feel better.

I feel great that I'm able to walk on my own again, but it is at the cost of hurting, so I don't go too far. I have been trying to exercise more, but it has been hard just to go for a simple walk...anything over 1/2 a mile and I'm ready to die. I'm eating pretty good for the most part and working on losing weight. I lost all of the water weight from the fluids I was on during chemo and my face has thinned out. My short, spikey hair is back and I love it. I have eyebrows again.

I have gone swimming once since surgery...it was very different. I can't swim very well at all anymore; I barely doggy paddle. I definitely can't jump in a pool, or jump at all for that matter. I'm unable to tip toe around too. All those muscles are gone. I have been able to ride a recumbent style stationary bike in therapy and look forward to the day where I can ride a real bike again.

My sister had a baby girl a month and a half after my limb salvage surgery, and I was unable to stand and hold her or walk around with her until she turned 9 months old. It was an amazing feeling being able to carry her in my arms.

I'm extremely proud of the things I have been able to accomplish this past year, and I'm looking forward to being able to do even more! I'm trying not to let cancer define me as a person, but I have to say that it is a big part of who I am now. I am a survivor and I'm proud of it. When people see my leg and ask me what happened, I tell them "I had cancer," and though they look at me with sadness and tell me they're sorry, I tell them that I'm a survivor and they say, "You're such a strong person," like they know me. LOL. If only they knew the half of it!

I think being involved in the cancer world is a huge thing. It's like joining another family and I have created a website with all of the blogs I wrote while I was going through treatments and surgeries so I could share how I felt and what I was going through. I enjoy being able to help other people through my experiences and volunteer for different cancer events. To read everything I have gone through and experienced, here is a link to my public Facebook blog site: Please "like" and share with your friends!

Thoughts and Hints for New Patients

Wendy with Denver Bronco Rick Upchurch, a recent survivor of leukemiaThe most important thing is to find a good oncologist. If you have osteosarcoma, find a good pediatric oncologist, age doesn't seem to matter to them when you are diagnosed with this disease. Have your scans and biopsy done immediately, and get that final biopsy report ASAP so you can start chemo! If you don't have your results in a week, start calling the doctor's office and being a pest. Those results are important and vital for you to begin your treatment.

Get a port...it's the best thing you can do for yourself to save your arms from being pricked over and over again. Get a prescription for Emla numbing cream (for your port site) from your doctor if they don't automatically prescribe it for you. If you are nauseous, try eating crackers, toast, drinking Ginger Ale, or eating Ginger chews/hard candies. BE PREPARED TO PEE...A LOT! I was on constant fluids for several days at a time when I was admitted for chemo. I peed 1 liter every 2 hours! It was crazy...I never thought chemo=peeing your brains out. Basically they pump it through you quickly and they want to flush it out just as fast.

Tips

Bring baby wipes to the hospital to wipe your body with since you can't shower with a port in. Bird baths with a washcloth and bucket of soapy water are also helpful.

If the chemo causes you to have body aches where you feel like your skin is on fire or bruised, use a heating pad. It really does relieve the pain...trust me!

Get a massage when you are physically able to. Being in a hospital bed for days at a time sucks.

Bring your laptop, mp3 player, books, or anything else that will occupy your time while you are in the hospital. You will be bored...all the time.

Drink lots of fluids when you are on Methotrexate. It can help lower your blood levels so you can leave the hospital a day earlier sometimes.

Get plenty of rest during and after chemo...you won't have much choice anyway since you will barely make it out of bed some days.

HAVE PEOPLE THERE TO HELP YOU! This is a HUGE thing...you can't go through it alone. You'll need a support system and people to help you take a shower or even eat on the bad days.

Eat good foods to re-gain your strength. Beef stew and other hearty things, good meals, protein, fruits and vegetables, and lots of ice cream lol. Don't change your diet unless your doctor specifically tells you to.

There are a lot of "whack jobs" out there that will tell you to cut this and that out of your diet and that this causes cancer and this cures cancer. Don't listen to them...they have no idea what they are talking about, and they are crazy if they think there is a cure for cancer, but that there is a huge conspiracy to keep it a secret.

Be honest with people and tell them what you are going through. Secrets only lead to rumors and you have enough to deal with. The more people who know about what you are going through, the more people you have to support you and pray for you. If you don't want anyone to feel sorry for you, just tell them that. It's as simple as that.

Try to find other people with the same cancer as you to give you advice.

PRAY! This is the most important tip I can give you. I believe that God will take care of you, no matter what happens. God bless you!

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Melissa Monholen 11/08/2014 10:48 pm
Today, August 11, 2014, it is with great sadness that I tell you that Wendy has passed away. She was surrounded by her family. Please pray for them during this terrible time. Wendy is sitting in Heaven now, no more pain, no more cancer. She is now a beautiful Angel and will watch over us all from above! I have learned a great deal from Wendy about personal, inner strength. I have also learned that you should always tell your family and friends that you love them, because you never know what the next day will hold. I love you Wendy!!
Stampergirl 11/08/2014 09:59 pm
Wendy Kay Romeis 1987-2014.
Glynn 24/12/2013 07:16 am
Hey Wendy!

I hope this finds you doing super! I was inspired when I read your story. My son is 22 currently and being treated at MD Anderson for Osteosarcoma. His story is very similar to yours. When he was 18 he complained about his left leg hurting, around his knee. After 2 months of it getting worse we took him to his doctor who fixed his broken leg when he was 12. They said it was a pulled muscle. After another 3 weeks, it started having a slight bit of swelling. At that point the dr. indicated we needed to go see a orthopedic surgeon. He did all the tests and found it was Osteosarcoma at the tibula. About a 2-3 inch tumor. They immediately started him on a chemo plan that would last 4 months and then he would have limb salvaging surgery and then 4 more rounds of chemo. He got Adriamycin, Cisplatin in the hospital for 4 days and then we had to go back the next week every day for blood tests, drugs to keep his cell count up. You name it he got it. This was horrible. I pray God's blessing on the dr.'s and researchers looking into cancer treatments that they find alternative successful treatments better than these chemo drugs! The surgery to remove the tumor was successful and they felt they got it all. He still had to take the 4 months of chemo as we were told the success is poor without the treatments. His tumor showed 95+% cell death and this was a really good thing per his doctors. He had the metal device in his leg break 2 times over the next 18 months and more surgery to fix the limb saving device inside his leg. He had checkup every 3 months for over 2 years and then he went to scans every 4 months. All were clean. During a PET/CAT scan about 3 1/2 years later they found a tumor (golf ball size)on the surface of his right lower lobe of his lung. He had a successful surgery to remove it and all margins were clear. Scans every 3 months were the suggested treatment by his doctor. (His former Oncologist later told us she would have had chemo done right after surgery to get the cancer in check. His new dr. didn't go that route. After 6 months another tumor was found on his left lung( about the size of a small orange). He had surgery to remove that tumor and again all margins were clear. He still had a small nodule on his rt. lung about 1/8" to 1/4". At this point I called his former Oncologist to get her evualation of what we should do next. She immediately directed us to MD Anderson in Houston TX. He has been there with his Mom since this Oct. 2013 getting Methotrexate every 2 weeks on one 5 hour infusion and then he has to drink water like a fish and have his blood checked daily for a week. He's off a week and it starts all over again. The dr. wanted to do 6 rounds of this regime(3 months) do the PET and CAT scans to see where we stand. Praise God the tumor hasn't had any change and is considered stable. He will have 10 more treatments until March 2014. The best advice I can tell anyone 1. Don't read all the stuff about cancer on the net! His former dr. said I was barred from looking at the net! It will drive you crazy and get you in a dark place. His dr. did give us a MD Anderson site that was helpful. 2. Your faith in God will be tested. God didn't give my son this illness nor did he make you have any sickness, but I believe this is a test of our faith and that of my family's faith in the creator of this planet. He has my son in his arms every day and there is a greater plan for his life. 3. Talk to others that have dealt with this situation. That's been the greatest "good" I've gotten out of this illness. I have meet some new friends that have a strong faith in Christ as I have and they have really supported my wife, son and I through this journey. Sorry to have been so "long winded" but I will keep you in my prayers and wish you God's richest blessing on your life. I pray for a complete healing in your body and wish you and your family the greatest holiday season.
David 19/07/2013 09:56 pm
Hi Wendy,
I was looking up bone transplantation when I came upon your site. I am happy for you that you have overcome this horrible disease. I've had a very similar situation as you and have been going to MD Anderson since 1981. I had osteo-sarcoma in my left leg when I was 11 and it was amputated. I also had to go through chemo for a few years...same ones as you did...Adriamycin, Cisplatin, and Methotrexate as well as Vincristine. I was cancer free for years until my early thirties when it came back in my right lung and I had to have a lobectomy. Later, they discovered that I also had a tumor on my right proximal tibia and I had the limb sparing surgery done with a total knee replacement. 2 and a half years later, it came back in my left shoulder blade and I had to have it removed as well. At that point, they decided to start chemotherapy again, but this time I was given a different one since I'd had a lifetime dosage of the others. I can't remember the name at the moment but I remember being told it was a derivative of mustard gas. This one didn't make me sick like the others, but it did make my hair fall out again. Since then, I've been cancer free, but have had problems with the knee replacement. The tibial rod snapped in 2011 and I saw a local orthopedic surgeon to repair it. Unfortunately, I also got a terrible staph infection and the wound opened back up, exposing the bone and I developed osteo myolitus. I decided to go back to MD Anderson since they originally did the TKR and thanks to my wonderful doctors, they were able to get the infection out after removing the infected implant and giving me an antibacterial rod for 8 weeks, then cleaning everything out again and implanting a new knee joint. Since the osteo myolitus had spread so much, I lost most of my tibia except for a few inches just above my ankle joint. I received a new type of TKR, one which relies on a compression fitting instead of being cemented in. In fact, I was just given the green light to start bending my new knee again for the first time in 3 months! It's funny how we take simple things like that for granted until we lose the ability! :) So when I read your story, I saw we had much in common as far as the ordeal with cancer. I'm so happy for you that you (like myself) have overcome cancer and I know what kind of strength it takes to endure what you have gone through. I think what you are doing to raise funds for cancer research is wonderful and I know it will help many people. Having people to talk to who know what it is to have gone through this and having the support of family and friends makes all the difference in the world. Thank you for taking the time to create this page, keep your chin up and take care! Oh, and feel free to add me to facebook anytime:)
michele 30/04/2013 02:31 pm
Hi Wendy;
Thank you so much for your inspiring story. My son was 14 when he went through an almost identical journey with his osteosarcoma. He is now 28 and is doing tremendously, although he is very reluctant to share his journey. I thank you for sharing yours. My thoughts and prayers are with you.

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