Jane Biehl is a 12-year survivor of a very rare form of blood cancer, known as myelodysplastic syndrome (MDS). She has enjoyed several exciting careers including a librarian, counselor, teacher, and writer. She loves to write about surviving cancer, overcoming hearing loss and the wonderful benefits of having a hearing-ear service dog.
Cancer is a dangerous disease that comes with many difficult decisions, making me constantly feel like I’m living on the edge.
I think most cancer survivors feel like they are living on the edge. Thrill-seekers love to live dangerously and attempt dangerous stunts.However, those of us with cancer didn’t ask for this.
Sometimes, cancer survivors are told that we have no evidence of disease or NED. We may even be told we are cured. Some of us are termed in partial remission. Others are given estimates of how long we might live. And tragically, too many of us end up with a shortened life.
I was told immediately after being diagnosed that I had an average of 104 months to live.I was stunned, but later found out this is a long time to live with almost any type of cancer. After the initial shock I set about making a life for myself and going on cruises all over from Scandinavia to Alaska to Barcelona.
Because of great research and new cancer treatments coming out, I lived well past that deadline. First, I was on an oral Revlimid (lenalidomide) for five years until my bone marrow biopsy showed that my disease was progressing to leukemia. Next, I had Vidaza (azacitidine) shots for two years. I then went back to the Revlimid for a couple more years.
My fantastic oncologist decided to order shots weekly to keep up my red and white blood cells, which I did all through COVID-19 lockdowns and afterward. I remember being the only one in the hallways of this once-busy hospital when everything was shut down. I watched the dedicated and exhausted nurses and medical staff battling this horrible COVID-19 and saw the National Guard deployed to help with the long emergency room waits of over 20 hours.
I knew I was fortunate, and as 145 months after diagnosis whizzed by, I was grateful. Some days I almost forgot I had cancer. Almost, but not quite.
Then I went back to living on the edge again. A bone marrow biopsy showed some very dangerous variants, and clinicians at the Cleveland Clinic told me that the only chance for a cure was a bone marrow transplant. I spent a long month consulting with different doctors, gathering information, and being told about this procedure. The doctors guesstimated I had approximately one to three years left. They also said the bone marrow transplant had a 35% to 50% chance of working, and my immune disorder made the procedure even more dangerous.
I told them honestly life is a crapshoot and decided not to have it. Instead, I started a new miracle drug just approved in 2020 called Reblozyl (luspatercept). So far it has worked very well, and I am moving along with luck and gratitude.
However, every day I feel like I am living on the edge. I think all of us do. Will this drug work, will we get out of remission, and will the next dangerous variant or new recurrence “get us?” It is a tough way to live, but I can only say I am thankful that so far, I am living on the positive edge. That is all I can hope for right now.
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