Tammy’s Story

Ewing’s Sarcoma at the ribs
Age at Diagnosis: 12
Date of Diagnosis: March 1986
Location: Texas

Diagnosis: I broke my arm due to a calcium cyst in 1985. At the start of 1986, I was having back pains. As the pain increased I started running a fever at the same time I had the pain. My mother was a nurse, so she instantly took me to a doctor when she found out. The doctors told her it was getting used to using my arm, however luckily for me my mother did not believe them and insisted they test more then just x-rays. When a bone scan was done, “hot spots” were found on my ribs on the left side of my back where the pain was. This was all happening to me the month before my 13th birthday. I don’t remember anyone ever mentioning the word “cancer” to me, but that is what it turned out to be, Ewing’s Sarcoma.

Treatment: I had surgery at the local hospital in the beginning of March in ‘86 to remove parts of 3 ribs from my back. This meant cutting the nerves and muscles by the shoulder blade on the left side. [I am left handed.] After the surgery my case was taken to a meeting of doctors at Syracuse University. Again luckily for me, my great uncle is a retired doctor and was able to go and sit in on the meeting. It was decided that it was cancer and that I should go to a cancer hospital and receive what treatment they deemed appropriate. March 26th, 1986, I received my first treatment of chemotherapy. Two of the chemotherapies I received were Vincristine and Adrimycin. I did 18 months of chemo and about 6 weeks of external radiation and an internal shot of radiation. My hospital, Roswell Park Memorial Institute, was wonderful and so were all the people I dealt with from the floor, the clinic, and the house were I stayed (Kevin House) when I had to get radiation everyday. I still keep in touch with some of the wonderful people there on a personal basis. The shot was given to me at Dana Farber in Boston. I even have pictures from my visits at Roswell and remember the people fondly, right down to my vampires, as I called my hematologists.

Recovery: My last treatment was October of 1987. I even had a party at home that some people from Roswell came to be at. Unfortunately I was still recovering from the last chemo. I am now 32 years old and have been lucky enough to not have any recurrences of any cancer. I have been clean on every check up. Since I have moved to different states I have had different doctors, but they all have kept my original doctor up to date on how I am doing and what is happening to me. I have even learned that I had one of the TOP docs to give me my treatments, something I didn’t know and now feel more pride and respect for him, Doctor Daniel Green. Due to my treatments and surgery, my left lung is 2/3 dead and my left back side is numb. However I am slowly over the years regaining feeling in my back. I do also have to be careful with my arm due to my muscles are a bit weak and sometimes are not able to hold my shoulder blade into place. Exercises help with that however. Finally, just in the last couple of years, a side effect of the chemo has been found. I now have cardiomyopathy, slight damage to my heart. One section of my heart does not compress as strongly as it should. I am taking a blood pressure medicine (Lisinopril) everyday now for it to help keep it from getting worse and in hope that some damage can be repaired. I try to keep positive and my family and friends over the many years help a great deal and the whole situation has given me my own belief in God and the effect of God in my life. Sometimes it is hard, but with other survivors I hope to meet and hear from, I hope that will make it even better.

Life now: Like I mentioned I have been clean from any cancer since my treatments. Had a few scares over the years though. I have been at the same company for 8 years working different jobs. It surprises people when they find out about my cancer and my surgery. When I change stores, a department store, I always have to let management know about my health problems in case I have problems breathing or if I am unable to do a job task. They have always been great about understanding and 99.8% of the time my health does not effect what I do at work. I don’t have my own family yet because I just can’t find Mr. Right for me. I have dated and never had problems with their understanding about my condition. Now if I can only find the right guy for me. *grin* Over the years I have learned what my limits are and go by them. Sometimes I push it a bit further just to see. Over all I am the same as everyone else. Second head of hair going through my childhood I missed, still a big kid at heart, with a loud mouth known for talking someone’s ear off. No one ever believes for a few minutes that I had cancer. They are even more stunned when I show off my scar and tell them what all was done. I am proud of my scar and always have been, from the top of my neck down my back and around on my side under my arm. That scar is my badge of honor and strength. Someone even described me using the word “courage.” I have yet to figure that one out. I just dealt with what came day by day. What else could I do? I have met, so far, one other Ewing’s survivor: the country singer Kevin Sharp. He signed his autograph for my and gave me a hug when I told him what we had in common. He was really wonderful, and even today I tear up when I think about it. Meeting him, another Ewing’s survivor, means the world to me beyond measure. I look forward to meeting many more.

Thoughts and hints for new patients: Ask questions when you don’t understand something. Don’t be afraid to speak up if something feels wrong to you. Admit to being scared so someone can help you. Be glad you are alive and fighting; I have met many who have not survived. Be thankful for every win of the fight against your cancer. Be thankful for all your friends and family and all the little things they do to help you, from getting you something to eat to reading you a book or just holding your head when you had treatment and are now throwing up. Read about other people who have had cancer and their experiences, and if you are lucky share with them and take back what they share with you. Learn what you believe in deep in your own heart, and hold on to that faith tightly so no one can take it away. It will give you the strength to get by one more day everyday. Try to find something to smile, laugh, and think good thoughts about. Maybe write down how you feel so later you can look back at it and learn about yourself.

One final thing. The Cancer Society passed out a book back when I was having treatments. I have read and reread it many times. It means a lot to me, especially one certain part I would like to share with you.

“Another incident of friendship involved a young camp counselor who found herself in the woods with two very small, very homesick boys who missed their mothers and were afraid of night noises. She suggested they both crawl in her sleeping bag where she hugged them and alleviated their fears. Toward morning the bag started to feel warm and very wet. Her reaction? “Isn’t this great! They feel so at ease and safe with me that one of the boys didn’t bother to get up and go potty.” – Erma Bombeck, I Want to Grow Hair, I Want to Grow UP, I Want to Go to Boise,” page 82.

To me this is amusing and it is just one small amusement in the book. I recommend this book to everyone, but us cancer survivors or anyone dealing with cancer will truly understand it. I hope this gives others as much laughter as I get from it still today.