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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.
I’m happy to be alive and thankful for all that I have, but cancer and the COVID-19 pandemic has taken so much from me, physically, emotionally and financially.
I usually try to be upbeat in most of my writing but this time I am going to be brutally honest. I am at a stage in my cancer journey where I am frustrated, angry, having increasing difficulty in seeing the positive, but mostly feeling bad.
We all know that cancer sucks and the side effects can sometimes be worse than the disease. I also discovered that many of the side effects never go away. I — like many other cancer survivors — live in constant fear that cancer will either worsen or return. I am also tired: tired of constant doctor and chemo appointments; blood draws, tests, protocols; and having to make tough decisions about my health.
I dare to say every one of us is thankful to be alive and grateful for each day. We do know how lucky we are. But I can whine and say I am constantly upset with how much “the big C” has changed my life.
I think back wistfully to what life was like before that awful day when I was given the diagnosis. I could physically do almost anything I wanted, within reason. I went to the gym two or three times a week and did a good workout. Now I go to a trainer, I cannot walk far before resting and I am short of breath climbing staircases. I can no longer hike or take long walks with my dog.
My muscles ache all the time, sometimes down to the bone because of the chemo I am on. Getting up and down is very hard for me and I have had people ask me if I am all right when I reply,“it is the chemo.” I am constantly fatigued and have to limit what I can do in a single day.
Then, the awful pandemic finished it all off. I love sports, musical plays and indoor programs like listening to famous authors. I can no longer do this because of the danger of exposure and getting COVID-19. I have had an immune deficiency all my life, but cancer has made it worse. Even crowded restaurants are a potential problem.
I also love to travel, and took several great cruises. I tried flying once and got COVID, so my doctors do not want me to try again. I also lost a lot of my hearing from the chemo I was on. I am very social and outgoing but avoid crowds because I cannot hear and make a fool of myself. My life has changed drastically from an outgoing social person always on the go and flying all over the country to a stay-at-home person always being fearful of going out.
I have worked hard all my life, and like so many of us thought I was financially set. When I was forced to retire and hadpay thousands of dollars in medical bills, that all changed. Money is a huge worry for many of us. I am lucky to have my pension and Medicare, but the prescriptions and premiums often cost more than I can afford. We already do not feel well and are constantly worried about money!
Yes, I am frustrated; yes I know life isn’t fair, yes I know I am lucky to be alive. But admittedly there are times that frustration mounts and I just want to vent and scream. I somehow know other cancer survivors feel the same way I do. I trust my CURE family will understand. Please understand we are grateful for our blessings, but we do mourn all that is lost, physically, mentally financially and socially. Please allow us to do that and do not judge us.
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