August 11, 2003
Sarcoma For Life-My Sarcoma Journey Continues
When I wrote the article My Sarcoma Journey, I had no idea I would be writing an update and more thoughts only a short time later. However another surgery made me realize I wanted and needed to say more about long term survival.
I had a fifth surgery for low-grade liposarcoma in September 2002. Because of increasing pain, my oncology surgeon wanted to investigate what was happening in my abdomen. We knew I had a hernia causing some of the pain so she and a plastic surgeon got together and made a plan for hernia repair and exploration for tumors. A cat-scan the day before surgery showed no tumor present and I was ready to celebrate! The oncology surgeon still would be present for the surgery. What a wise doctor! It turned out two hernias were repaired and four tumors were removed. That was the good news. The bad news was a tumor was left behind. It involved my remaining kidney so it was better to leave it alone for now I was told. If I became symptomatic or had some big changes on my scans, it could be dealt with then. For the first time in my 15 year odyssey I had problems after surgery and had to be hospitalized twice. The first time was the day after I left the hospital. I had developed severe nausea, vomiting and weakness. After four more days in the hospital I left. About a week later I was back to be checked out and released by the plastic surgeon and he said my incision needed to be redone right away. Only a few hours later I was back in surgery and another two days in the hospital. Home looked so good! We left Houston with drains in place and lots of staples holding me closed.
Having a tumor left behind was a first for me. I have talked to many others, via my volunteer work as an www.ACOR.org list manager-owner, who have had this experience but usually with higher grade tumors. With low grade tumors like mine are, surgery is the only option at present. Even though I knew after 15 years, I would not be cured-unless some magic potion is discovered- it caused some dark times for me. Then I was able to stop taking pain medication that I had needed for years and the dark clouds lifted. It turned out knowing I would no longer have cancer free years was not the problem after all. It was stopping the medication. The surgeon had, in addition to tumor removal, taken care of adhesions and scar tissue from previous surgeries. The result after hernia repair, adhesion removal and scar tissue removal was very little pain. I had no reason to take these strong medications and I really wanted to stop. We need to take these medication but the side effects can be so sneaky. Do be careful! At present I am feeling better than I have in years and able to participate fully in life.
While I am very grateful to live a long life with cancer, I will never be someone who says I am glad I have it. I have had this thought - I had cancer - I still have it - I am meant to do all I can to help others by lending my support with information,caring,sharing and living with cancer. I have learned so much from others about bravery while they fight this rare cancer. Some research is being done but for sarcomas but not enough. There are some promising clinical trials going on and it is by talking to each other we can find the latest information and share it with other Sarcomates. I would urge anyone, whether newly diagnosed or long time patient to seek out information and find the specialists in this disease. There are some excellent doctors in this field but they need our help.
It is by working together we can help with research. We are the pioneers. We are in this for LIFE!!
Anyone whether, patient, family or friend, can contact me I will help if I can.
My Sarcoma Journey or I Have What?