What You Can’t Do With Cancer: Talking About the Negatives

Jane Biehl is a 12-year survivor of a very rare form of blood cancer, known as myelodysplastic syndrome (MDS). Catch up on all of Jane’s blogs here!

I strive to stay positive when writing about cancer, but it is important to discuss the negatives too for honesty's sake. First, I am grateful for many things about my Myelodysplastic Syndrome and unusual blood cancer. I have lived much longer than ever anticipated when I was first diagnosed. Modern research and new treatments appear constantly on the horizon just when I need them. I have incredible doctors, nurses, and cancer centers both locally and at the Cleveland Clinic where they take excellent care of me and I feel like the nurses are family. My writing keeps me sane, and I can reach out and hopefully help other people with my insights and experiences.

But sometimes, just sometimes, I feel sorry for myself and have a “pity party.” I have an immune deficiency called IgA, which has been identified as a precursor to my cancer. This resulted in my being ill for my entire life with kidney and Upper Respiratory Infections or URIs. The cancer and the immune deficiency leave me susceptible to picking up any infection that flies by, which made COVID very scary for me.

I was born with a severe hearing loss which we think is due to my mother having the flu when she was pregnant with me. I learned from birth to adjust with lipreading and hearing aids and some assistive devices until an ototoxic drug, Revlimid, resulted in a profound hearing loss.

Now, every time I fly, I get an URIs and just recovered from one after five months of antibiotics. However, not flying means I cannot see my relatives who live out of state which is not happening. Cruises used to be a way to travel, which I love but now the dangers of getting sick are too great. I dislike driving but have adapted and done more of it to be able to travel.

During high school, I participated in extracurricular sports such as basketball, track and field, and softball. Currently, due to cancer obstructing normal blood flow to my extremities, I am unable to hike more than half a mile. Additionally, I must pause halfway when ascending the steps to my second-floor apartment because of this condition. After I conduct activities like errands and grocery shopping, I must rest when I get home rather than jump into more activities around the house.

As a child, I loved to swim, and my apartment complex has a beautiful pool which is the social center for all of us. My immune deficiency prevents me from being in the sun because of a predisposition to melanoma. Additionally, I am unable to wear my hearing aids and could not communicate with other swimmers and my neighbors anyway.

After my hearing loss took a serious dip, my social life was affected. I used to be able to go into restaurants and larger gatherings and comprehend most of what was being communicated with hearing aids and lipreading. If I do go out now, I try to be with only 3 or 4 people because I need to lip-read everyone. I do have a live transcription on my telephone I use constantly not only in restaurants but with church, plays, and other events.

I have severe arthritis in my shoulder and am in constant pain. The only cure is surgery, which is too dangerous with cancer, and my PCP will not allow it. Honestly, I never liked to clean anyway and have paid people for years. However, I cannot even do decluttering now, and my place needs it!

Due to the cancer affecting my gums, I had to have over a dozen teeth removed. My once beautiful straight teeth now have horrible gaps. Fortunately, my remarkable dentist devised an invention which should keep me from losing any more teeth, but the cosmetic damage cannot be changed.

I truly get upset about the movies and television shows that make it sound like once cancer is treated, it all goes away. Nothing is further from the truth. In summary, there are many things I am unable to do. Though some limitations may come with age, my friends and family are still enjoying long hikes and park visits, activities I wish I could participate in.

I write this not to be a complainer but to explain that cancer itself is hard enough, but there are residual side effects years later or sometimes permanently. I have fought this cancer for 15 years. Someone may ask what I am able to do. I am fortunate too. I love to read, write, and communicate. I often go out with a few friends at a time. I take short half-mile walks with my little hearing-ear dog. My writing has expanded exponentially. I belong to a book club and enjoy the company of others who love reading. I love my church and the people there who accept me for who I am. There are still some things I can do. I love life and cherish the things that are most important, which includes friends and family and a purpose in my writing. It is all I can do, and it has to be enough!

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