Kaye’s Story

Ewing’s sarcoma at the tibia
Age at Diagnosis: 32
Date of Diagnosis: December 2005
Location: San Antonio, Texas
Team: Drs. Drengler and Williams at the Cancer Therapy Research Center

Diagnosis: The first question everyone asks when I tell them that this is primarily a kids cancer is “How did you find out you have it?” I literally woke up one morning and fell out of bed. I went to bed, and the next morning tried to stand up, and fell. I went to my primary doc, and he told me that I sprained my calf. I refused to take that for an answer, and requested a sonogram for a blood clot. You know there is a major problem when the radiation tech gasps and then says hold on. That was October 28, 2005. After many sonograms, CT’s, MRI’s, and being sent to the wrong doctors, I finally received my biopsy in November (right after I turned 32). Two weeks after my biopsy, I had to call the doc to check up. He explained to me that it took so long for the results because they had to send them to a pediatric hospital for confirmation. I was at work when he told me, and I think I fainted. Not too sure. That was December 1 2005. Ewing’s sarcoma/PNET completely localized, no mets, about the size of a large egg in my calf.

Treatment: The next 10 days included more tests, and having my port inserted, and paperwork for my job. I started chemo on December 12, which consisted of vincristin, epirubicin, and ifosfomide/mesna. The CTRC is an outpatient clinic, so I had to take this backpack home for 24 hour treatment. These were Monday-Thursday, half-treatment on Friday with a disconnect. Took a week break and then started again. From what I have seen on the papers, I was taking the “dose-density?” which was 2-2.5 times the “typical” adult treatment. Merry Christmas to me, my hair fell out 2 days before and I was neutropenic. I did this 4 times out of 6, and was cut short from my body being exhausted. I had surgery on March 9th, my tumor shrank 90% and was completely dead. All they did was remove a long muscle, carve my tibia out (imagine a lincoln log), remove some nerves, and totally restructure my tendons and all. Took a month break, and then had 6 sessions of chemo the same way, but every 3 weeks instead. I was considered the oncologists dream patient, because I was only terribly sick one time, landing me in the hospital for 3 days. Other than that, I had virtually no nausea and only lost 25 pounds.

Recovery: Since my tibia was so cut up, I was never given P.T. I have a beautiful scar that is about 9 inches long on the inside of my leg. The only things I can’t do are things that require me to be on my feet for a long time, or things that will stress the muscles. However, I am still having some pain management issues, which from what I have been told are not uncommon for the amount of bone that was removed. My moon boot is my best friend now, but I need to find a way to wash it!

Life now: I returned to work in July 2006, and have been fortunate enough to stay on even during a massive layoff. I make sure every day to remind them that I still have some unknown side effects, like my vision being crappy or chemo-brain. (That’s my excuse…what is theirs?) My boyfriend has got to be the most patient man in the world, he has never complained to me during the whole process. I feel for our friends! It’s nice to know that I seem so normal that people forget that I was sick.

One thing I realized is that you have to learn to work “the system”. Ask human resources about a leave-bank, or medical leave before you take FMLA. Take advantage of your company’s assistance programs, if they have any. If anyone offers to help, TAKE IT!

Thoughts and Hints for Patients: Take the pain meds and all of the anti-nausea meds, they give them to you for a reason. If something doesn’t feel right, question it. That’s what the doctors and nurses are getting paid for. Get involved in your treatment, be persistent and always have someone else with you in the appointments. You are your only advocate.

Most of the information I found about my cancer is so negative, and there is such a thing as information overload. I have trained myself to stay positive, because it is so easy to let this consume who you are. I also trained myself to allow myself to have a “pity-party” day. But most of all, it has made me realize that this is a day by day battle. If this is the worst that can happen to me in my lifetime, that’s fine. That means it’s one less child that has this terrible cancer. Bills are only money, credit can be repaired, and work will always be there, but I only have one lifetime to enjoy, so I better get busy! By the way, since this is a pediatric cancer, when do I get my lollipops and gameboy?