Unless you have a type of cancer that can be surgically removed or blasted into oblivion with chemotherapy or radiation therapy rendering a cure, having a chronic cancer like multiple myeloma robs you of a normal life. Learning to accept that fact is an adjustment.
I was diagnosed with multiple myeloma 2 years ago, when I was just 54. Although I’m happy that a stem cell transplant and a continuous maintenance regimen of lenalidomide (Revlimid) and dexamethasone have kept my cancer stable, I know that at some point, it will progress. I wish that I and other myeloma survivors could be permanently rid of this cancer, and maybe that will be possible in the future.
My oncologist believes myeloma will be cured over the next decade, and I’m hoping he is right. In the meantime, I try not to waste a moment of my day and make sure to pay attention to the important things in my life, like spending time with my wife, Christie, and attending every one of my 15-year-old son’s soccer games. Living with the feeling that the clock is ticking down also propelled me to enroll in a research study to make whatever contribution I can to ensure that my oncologist’s dream of curing myeloma in 10 years becomes a reality—if not for me, then for the thousands of people who will be diagnosed with the cancer over that time.
Participating in Research
Soon after my diagnosis, my oncologist told me about the CoMMpass (Relating Clinical Outcomes in Multiple Myeloma to Personal Assessment of Genetic Profile) study and asked me to join. CoMMpass was launched in 2011 by the Multiple Myeloma Research Foundation (themmrf.org) so researchers could gain access to myeloma patients’ genetic material at various stages of their cancer, including from before treatment begins to remission and relapse, to learn how patients respond to therapy over the history of their disease. I immediately said yes, because it seemed like the most logical thing to do. When you have cancer, you can get stuck in a place of feeling sorry for yourself, or you can move forward and become an active participant in your fate. I chose the latter.
Coping With Incurable Cancer
Getting a cancer diagnosis, of course, is overwhelming—and frightening. When the cancer is incurable, those feelings get ticked up a notch, because you have to remain persistently vigilant about monitoring any changes in your disease that signal disease progression and can never relax your guard. I have IgG kappa myeloma, and although maintenance therapy is succeeding in keeping me in near remission, I know my status can change at any time.
I was fortunate to find a leading expert in myeloma who is knowledgeable about the cutting-edge research being done in the disease, and I’m confident that he will do everything he can to ensure that I live many years, perhaps even decades, with this cancer.
A New Full-Time Job
For me, the most surprising—and challenging—aspect of coping with cancer is how much time it takes out of your daily life, especially when the cancer is chronic and requires frequent monitoring. Having cancer has become my new full-time job. I’m lucky because I’m self-employed and can take off when I need to for doctor visits or laboratory tests and then make up the time I’ve lost on nights and weekends; so I never get too far behind. Other survivors, I know, aren’t so fortunate.
The cost of having cancer is another unexpected burden, although having good health insurance coverage and a reduction in the price of some medications (thanks to drug manufacturer patient assistance programs) has helped keep me financially intact. Still, managing the treatment schedule and cost of having chronic cancer takes a lot of extra planning and discipline I wasn’t expecting.
The True Burden of Cancer
I’m grateful for the excellent medical care I receive from the members of my oncology team, but I wish that part of this care included information about the time and cost involved in having cancer. If I had had that conversation early in my diagnosis, it would have better prepared me for the many challenges cancer has presented over the past 2 years.
Explaining to patients how cancer will impact their lives financially as well as in time spent for treatment and long-term monitoring is just as important as explaining the details of the disease, treatment, and prognosis. ■
Roger Rawlings, 56, lives in Lakeville, Connecticut.
