Lori's Story

In May of 2000, everything I thought I knew about my life changed. I had just come home from a trip to New York to visit my grandparents. It was a very normal day, and while showering I noticed a pain in my right kidney area. "Great," I thought, "I’ve got a kidney infection." I went to my GYN, as he was my closest physician and the easiest place to get a urine test done. There was no infection, as it turned out, but I did have blood in my urine for no reason. He admitted me to run some tests.

He scanned, x-rayed, scoped…you name it, he did it. On the very last day, he opted to run a bone scan to see if he could pinpoint the reason for my now phantom (as in gone) pain. Because the machine was not working correctly, the tech had to scan my body in sections. She was only supposed to scan from the pelvic area up, but she did my entire body - and probably saved my life. During the bone scan, my tumor was found. Of course the x-ray tech couldn’t tell me that, she simply told me to get it checked because the scan wasn't normal. As a side note: no cause was ever found for the original kidney pain.

Off to the orthopedist I went…after all, I thought I had a knee problem. He said, "You have to go to M.D. Anderson." I was in utter disbelief! For what? I thought this was just arthritis. He send me for an MRI to confirm his diagnosis of bone cancer and, sure enough, it showed a golf ball sized tumor in my right distal femur (before this I didn't even know you called that part of your leg the "distal femur").

Dr. Fain paved the way for me to get in to M.D. Anderson, where my case was picked up by the Chief of the Sarcoma Clinic, Dr. Robert Benjamin. I’ve come to truly love this man. But, I digress. This is when the tests really started. Every cancer patient out there knows about the tests. I'm going to glow in the dark & poop in technicolor for the rest of my life! All of the tests came back negative except the bone biopsy. It was not specific. They could only tell that it was a spindle cell sarcoma, not the actual "make & model."

Treatment

Chemo started on June 30, 2000, and my hair was gone three weeks later, mostly because I shaved my head before it could fall out on its own. The thought of that just seemed too depressing. Many rounds of chemo ensued (doxyrubicin & ifosfomide in combo for three rounds & methotrexate for a couple rounds as well) until, in September 2000, I was scheduled for surgery. My tumor was only 50% necrotic.

Dr. Kristi Weber is a great doctor, an excellent surgeon & the best cheerleader there is! She performed an allograft reconstruction on my right femur. So now I have a little over five inches of someone else’s femur bone in my body. She was able to remove the tumor with clean margins - albeit, very thin clean margins on the distal end, but clean nonetheless. I was then to be completely non-weight bearing until the two bone grafts healed. This ended up being 13 months…

In November 2000, during my monthly appointment, Dr. Benjamin came into my exam room and smiled at me. For the first time since I’d been his patient, he was smiling. I started to cry, thinking, "Maybe I’m going to live through this after all." He told me they had been able to identify my cancer -  my tumor was MFH (I’ve have lots of words that fit those initials – can’t put any of them here though!). I was told this type of cancer in the bone in someone my age is very rare. Woo-hoo, lucky me! He told me there would be more chemo, inpatient & outpatient. And that 2001 would probably suck, but 2002 would be great! 2002!!! Up till this point, no thoughts had strayed that far ahead.

The new, tougher chemo regimen started (more methotrexate & two inpatient rounds of cisplatin) and he was right, it still sucked…until, in April 2001, my bone marrow dictated that there was to be no more chemo. My body was simply unable to recover from the chemo. The other thing that had been dictated was that I had to have another surgery. Despite being a model patient and following all the rules, the bone graft had not healed at the top juncture. This time, my fibula was transplanted to my femur along with a blood source. The original metal brace was removed, and a longer one was put in…along with 13 screws. On an x-ray, I look bionic, but I still have my leg. Since there was no chemo to interfere, the leg finally healed. Five months later, my gift for my 45th birthday was that I was allowed to walk on both legs!

Life Now

I have been given the ongoing gift of still being here, and I am writing this for all of you. It is now July, 2012, and as I update this story, I am 11 years, 3 months & 6 days off chemo. I’ve had no recurrences.  I got to see my son graduate high school & then college. I live everyday as well as I can. I celebrate the small things as well as the big ones. I revel in my friends and loved ones.  I am forever, truly grateful for all the people who loved me thru this grueling experience called cancer. 

I have come to believe in Guardian Spirits (remember that phantom pain?) and the people at M.D. Anderson. Dr. Weber has moved on to Johns Hopkins and I truly miss seeing her. There’s just something about the people who save your life that you never get over.

Now, every time I go in for my yearly tests, I wear a t-shirt that proudly declares: "I'm Not Dead Yet"!

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Copyright © October 2012 Liddy Shriver Sarcoma Initiative.