So many people in my life have been affected by cancer. My Great grandmother, born in the late 1800’s was born in Germany, moved to Russia, then immigrated to the United States in the early 1900. She had colon cancer and had a colostomy. She died young.
My father died of Spindle Cell Sarcoma at C2 in his neck. The tumor pressed on his spinal cord and turned him into a quad. He was a very tough guy. Lots of surgeries. Tumor removed 4 times. Muscle transplants to close unhealing wound due to radiated skin…a 14 hour surgery. My dad had been dead for 14 years and technology has improved tremendously.
What I found most amazing about my dad’s cancer battle was the number of people who spoke up one to one. A nurse asked, “Why are you going to this Dr.” My parents said that’s just who the local docs sent us to. The nurse said that she thought they should change drs. because she liked my parents so much. Amazing things happened all the time.
Unfortunately his cancer was fairly rare. It is difficult to have a rare cancer. Nobody knows much. I called MD Anderson several years after he died to ask about heredity of this cancer. They did not know. They only saw about 100 people a year with that kind of cancer.
Last March I was diagnosed with Anal Cancer. This has been a difficult journey, but am so grateful to my local docs, who had never dealt with anal cancer, but got me connected to people. Even my oncologist only sees about 1 patient a year.
This is frustrating in a way because it would be nice to have someone know my kind of cancer like the back of their hand. The internet has brought new ways of learning though. I have joined an anal cancer support group. Their experiences have given me information about all questions anal cancer. The cancer fighters at the Cancer Society’s blog have been through more than I have and I have learned much from them about daily living.
What is still amazing is that we are all on a cusp of learning. Friends have had anal cancer spread to really strange places, like the brain. (It usually metastasizes to the liver and lung.) MD Anderson Anal Cancer experts have said they don’t know about the spread to strange places because anal cancer patients have never lived this long.
I believe this is true of many cancers and we need to keep pushing forward to the next big steps. Thank you for what you are doing.