Living With Cancer Survivorship Guilt

As a 20-year survivor of multiple myeloma, I question why I’m still here when so many others have died.


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Although I was officially diagnosed with multiple myeloma in 1997, the first sign of the cancer was evident 2 years earlier, when a single lesion (a plasmacytoma) was found in a bone in my lower back. The bone was replaced with two thin stainless steel rods, and after a course of radiation therapy, my medical oncologist said I had a 50/50 chance of developing multiple myeloma. When I was later diagnosed with the cancer, he admitted my odds all along were closer to 80/20, but he hadn’t wanted to worry me. Although I was a little angry that he had not been completely straight with me, I was grateful to have a brief respite from having to come to terms with such an unpredictable and menacing cancer as multiple myeloma.


As far as I know, there is only one other myeloma survivor who has consistently been on lenalidomide longer than me.
— Phil Falkowitz

Twenty years ago, treatment of multiple myeloma was mostly limited to a combination high-dose chemotherapy regimen of vincristine, doxorubicin, and dexamethasone (VAD) followed by stem cell transplantation, none of which was likely to cure the disease and at best would extend my life by 2 to 5 years. At just 47, and with young children to raise, I couldn’t imagine having a hard endpoint like that and was determined to do what I could to live as long as possible and made plans to proceed with the transplant.

But the cancer was progressing so rapidly, my vertebrae collapsed before I could get the transplant. I spent the next year mostly bedridden following emergency surgery to piece back my myeloma-riddled bones. In the summer of 1998, I received four cycles of VAD induction therapy and had an autologous stem cell transplant.

By early fall, I was feeling so well I began to think about returning to work, but just 2 months later, I had a relapse and was prescribed a chemotherapy regimen that included interferon alfa and later dexamethasone, which bought me about 1 year before the cancer started advancing again. Although I was able to go back to work, the side effects from the interferon were difficult to manage. By 2000, I was back on VAD, and my vertebrae were in danger of further collapse. I feared I would spend the rest of my life—however long that might be—in a wheelchair.

Advances in Myeloma Saved My Life

Lenalidomide (Revlimid) in combination with dexamethasone finally gave me the control over myeloma I needed to get my life back, and it has allowed me to manage my cancer for nearly 2 decades. As far as I know, there is only one other myeloma survivor who has consistently been on lenalidomide longer than me.

During that time, I was able to return to work, raise my family, and make a contribution to the myeloma community as a patient advocate.

Giving Back to the Myeloma Community

Multiple myeloma is such a rare blood cancer—with only about 30,000 new cases each year in the United States1—that when I was first diagnosed in the late 1990s, my wife, Barbara, and I didn’t know any other patients with the disease. We knew we weren’t the only family coping with the cancer and wanted to do what we could to help others facing the same ordeal.

I contacted the International Myeloma Foundation to learn more about this cancer. With the Foundation’s help, Barbara and I started a patient support group in our house. Over the years, the group has grown so large—we now have 150 members—we’ve moved our monthly meetings to the Ralston House in Philadelphia, where experts in myeloma—from oncologists to nurse practitioners and even dentists—come to talk with us about the incredible advances being made in myeloma and what we can do to stay a step ahead of this disease until a cure is found.

Questioning the Uncertainty of Life

Despite the progress being made in the treatment of multiple myeloma, the average life expectancy for patients remains stubbornly low, at about 5 years, although new therapies are extending that timeline to over 10 years for some survivors, and for survivors like me, 20 years and longer. Over these 2 decades, I have lost many peers to this cancer and wonder why I’m still alive. I’ve watched many people in our support group become hobbled by bone pain and bone fractures, incapacitated when their kidneys and other organs started to fail as their disease progressed uncontrollably, and I wonder why I’m still here.

What is so different about my myeloma that has enabled me to live for all these years while so many others have died? I don’t know the answer to that question and have tremendous survivor’s guilt that I have been able to live so long when others have not been so fortunate. I assuage that guilt by advocating for patients’ rights, counseling patients on new treatment options, and fundraising for myeloma research.

I know I’m lucky to still be alive, but myeloma leaves no one completely unscathed. The constant back pain and peripheral neuropathy in my feet have limited my lifestyle and are constant reminders that I have a fatal disease. I know I can never let down my guard or take my life for granted, and I’m in perpetual vigilance to stay ahead of this cancer.

Whatever happens in the future, I am comforted by the fact that I have not wasted the time I’ve been given. I’ve been a good husband, father, and citizen in my community. And like everyone else, I continue to strive to live the best life I can for as long as I can. ■

Mr. Falkowitz lives in Langhorne, Pennsylvania.

REFERENCE

1. American Cancer Society: What Are the Key Statistics About Multiple Myeloma? Available from https://www.cancer.org/cancer/multiple-myeloma/about/key-statistics.html. Accessed July 7, 2017.


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