Jane is a ten-year survivor of a very rare form of cancer Myelodysplastic Syndrome. She has enjoyed several exciting careers including a librarian, counselor, teacher, and writer. She loves to write about surviving cancer, overcoming hearing loss, and her hearing ear service dog, Sita.
By cancer standards, 104 months is a long time, but for me, it flew by. As my oncologist has said about all of her patients, it is never long enough. I always want to write more, do more, travel more and live life more.
I have always known there was an average timeline on my kind of cancer. By cancer standards, 104 months is a long time, but for me, it flew by. As my oncologist has said about all of her patients, it is never long enough. I always want to write more, do more, travel more and live life more. I told myself that I would not worry about it until the time came and then deal with it. Maybe this was denial, but it worked for me.
I came up against that timeline sooner than I ever dreamed. It seems I just finished grand celebrations for my 60th birthday, and now I am two years short of my 70th. So I just kept galloping along.
Until my blood work got funky.
I had tried a couple of different types of chemo. I felt weak and was concerned. I told my doctor before my latest bone marrow biopsy that I had a bad feeling. With my type of blood cancer, the only way to know if I am better or worse is this test. My oncologist also had some reservations. She mentioned the benchmark we were both aware of, that dreaded 104 months, and that I had lived longer than any patient she ever had with this disease. Everything in the literature on MDS shared the same benchmark from places that had done a lot of research from all over the world.
I had the bone marrow biopsy, and the results did not come for three weeks because of special laboratory testing. I became despondent and worried. I told myself I would not be negative, but I was. I talked to my minister and to my close friends and family. I worried and stewed and carried on for three long weeks. I got myself so down physically and mentally that I got bronchitis on top of everything else. And I have not had bronchitis for many years!
By the time I reached the doctor for the results, my blood pressure was up to over 180. I fell apart. She told me that the bone marrow was exactly the same as six months ago. In fact, she was taking me off the present chemo I had been on for two years. The Vidaza shots were administered in the stomach for five days every month. She felt I could go back to three weeks on followed by one week off of oral chemo. Not only was this much less painful, but gave me freedom to go out and enjoy life more instead of having the shots and coming home to bed for a solid week.
I asked her why this miracle happened. Her answer was simple. “You have not been a typical patient from the beginning. You have tolerated chemo longer than many patients. We are getting rid of that benchmark.”
I believe in visualization techniques and am picturing throwing the whole thing out the window never to return.
What my doctor, who is now my friend, also knew was that I am in the middle of publishing two books, have taken several cruises and am planning more, and I have a fantastic support system. My church has prayed constantly along with other family and friends.
Yes, I read and follow the experts from all over the world on this very rare disease and respect them. But every one of them would admit that each of us is different. When I dwelled on the average, I just got sicker and the blood pressure was soaring which is definitely not healthy!
I also still have work to do. I don’t believe that some people live longer because they were chosen to. I don’t think God is pulling strings like a puppet and deciding that one person is living longer than another, because you have more or less importance in the world. That is not a loving and forgiving God. And I have lost loved ones a few months after a cancer diagnosis, and still grieve for them.
However, the cells in our bodies react differently for everyone. This is why the experts cannot predict for sure. Add many other factors such as medical care, age other health problems and it is impossible to predict the same results or timeline for each person. We are unique and that is awesome. There is no one else in the world like us!
What I do believe is somehow I have been given a gift. Maybe only for six months until the next biopsy. Maybe for longer so I reach my seventieth birthday. But I can accept the gift of life. Not question or ruminate or wonder why. Just take what is given to me and enjoy it. So I am off planning my next cruise — anyone want to join me?