Having cancer is hard enough. It has robbed me of the possibility of many productive and pleasurable years ahead of me. It shouldn’t also rob me of having a dignified life.— David Neises
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In the spring of 2011, I was feeling so fatigued I needed to rest after walking just a few steps to the kitchen and not doing anything more strenuous than making a cup of coffee. Fortunately, I have a wonderful primary care physician who takes me seriously when I have a complaint about my health, and when I told her I felt something was very wrong with me, she immediately ran a series of laboratory tests. When her office called with the results, I was told that my hemoglobin level was so low, 5.6 g/dL, I needed to go immediately to the emergency room for blood transfusions and further tests. Once in the hospital, a blood test measuring my creatinine level found it was so high, I was nearly in kidney failure. Additional tests finally determined I have multiple myeloma. Since then, my journey with cancer has been a struggle.
Later that year, I underwent four cycles of a high-dose induction chemotherapy regimen of lenalidomide (Revlimid), bortezomib (Velcade), and dexamethasone to reduce the amount of myeloma cells in my blood, followed by an autologous stem cell transplant, which gave me a partial remission from the cancer. To give me a greater shot at a prolonged event-free survival, my oncologist recommended I have a second transplant, and we made sure to bank enough of my harvested stem cells for future use. In the meantime, I was put on lenalidomide maintenance to keep the cancer from progressing, which had only limited success, and since then I’ve been on a series of therapies, including pomalidomide (Pomalyst), which caused an allergic reaction, and carfilzomib (Kyprolis), which also only provided a temporary reprieve from the advancing cancer.
Physical and Financial Distress
After 5 years of living with myeloma, the toll on my life both physically and financially has been substantial. When I was diagnosed at age 62, I was working as a computer programmer and retirement was still years away. I later realized I couldn’t stop working, even if I wanted to, because the cost of the treatment was so incredibly high and my health insurance covered just a portion of it.
I now find myself in a catch-22 predicament: I can’t afford to live and pay for my cancer treatment without working, but the side effects from all the therapies, including neuropathy in my hands and feet, and the complications from the myeloma itself, such as bone pain and weakness, make it impossible for me to continue working as I did before.
I now rely on my Social Security and Medicare benefits to cover my living and health-care expenses, but they aren’t nearly enough to keep up with my soaring medical bills. When I was taking pomalidomide, the cost of the drug was $14,000 for a 30-day supply, and my copay was $2,000, which I couldn’t afford, and had to ask for assistance from a charity to cover the cost of the bill. I’ve worked hard all my life and saved what I could to ensure a secure future. I never imagined I would be in such a precarious financial position at this age.
Losing Quality of Life
But most distressing of all is how much cancer has altered my quality of life. Once able to ride my bike 25 to 30 miles a day, I’m lucky if I can get in 15 miles before I become so exhausted I have to stop. Another one of my great pleasures is flying small planes, but I can’t get my pilot’s license renewed because I can’t pass the medical requirements. And I love traveling around the country in my RV and used to be able to drive 24 hours straight without a break, and now I have to stop and rest after just 4 or 5 hours on the road. I still enjoy my life, but every aspect of it has been degraded.
The Indignity of Cancer
Currently, my myeloma is stable, and I’m not on any treatment, but I know this pause in disease progression will be short-lived, and I’m hoping to undergo a second stem cell transplant in January. Before that can happen, however, I need to buy Medicare supplemental insurance to cover the cost of the therapy, and I’m not sure how I’ll be able to afford the additional cost each month.
Having cancer is hard enough. It has robbed me of the possibility of many productive and pleasurable years ahead of me. It shouldn’t also rob me of having a dignified life. ■
Mr. Neises lives in Overland Park, Kansas.