Published on March 30, 2020
Alan Frost is 83 years old and living with Waldenstrom macroglobulinemia. When Alan first shared his story with Patient Power, it was prior to the COVID-19 outbreak. He recently sent us an update to share how life has changed for him. Here is Alan’s story, told in two parts.
Alan’s Story: February 2020
I am an 83-year-old man who was diagnosed with Waldenstrom macroglobulinemia about three years ago. I am writing this because I feel that my age has affected my attitude toward the disease and the treatment of it. My outlook on life at this point is, I think, a realistic but not morbid realization that the years remaining to me are not unlimited. This has colored every aspect from diagnosis to treatment.
Firstly, the diagnosis wasn’t that difficult to accept. For one thing, I had gone from being really active to lethargic. I was living a physically and mentally exhausted existence and didn’t understand why. The diagnosis provided me with a much-needed explanation, along with hope for relief from some of the symptoms.
What was difficult to accept, however, was the watch-and-wait regime that my specialist recommended. While she explained the reasons for this approach, at my age it seemed like watching a finite resource dwindling away unnecessarily. I suppose those who are younger will find this difficult to understand. Just think “bucket list” to time-remaining ratio.
One of the things that made the diagnosis difficult for everyone involved was trying to determine the difference between symptoms that were disease-related and those that could be attributed to the normal aging process. This was, quite often, an impossibility. The year or so that I spent living in this watch-and-wait limbo was, to say the least, discouraging and sometimes depressing.
Finally, the day arrived when treatment was offered and accepted with some enthusiasm. The description of the potential side effects from treatment did not dampen my optimism for a brighter future. “Hooray,” I thought, “a light at the end of the tunnel!”
The treatments I received—one every 28 days for six total—was the combination of bendamustine (Treanda) and rituximab (Rituxan). Naturally, I had a little trepidation initially, having been warned of the possible side effects. And, it was not, I confess, a totally positive experience—not so much with the treatment sessions (kudos to the great staff in the medical day unit where the infusions were administered) but for the 2 to 3 days following each session. Nausea was a part of the discomfort, but it was well-controlled with medications prescribed by my doctor.
By the end of the second week after treatment, I was able to hit the golf course and display my usual level of incompetence—medicine is not the answer to all problems.
The course of treatment is now finished, and my results are very satisfying. The follow-up blood tests and CT scan showed significant improvements in my blood analysis. I am now on a maintenance schedule—rituximab injected every three months for two years. My specialist had the good grace to laugh when I asked about the following 20 years.
I have tried to push my disease into the far reaches of my consciousness. I do not wish it to be the center of my being for however long my future. I do not read all of the research literature that is available, my aging mind is unable to absorb so much new data. My specialist, in whom I have great confidence, is much better equipped to assimilate and act on all of the new research than I am.
I hope that the forgoing gives some insight into the journey of a patient of advancing years in the battle against Waldenstrom macroglobulinemia. The light at the end of the tunnel turned out not to be a train, and next golf season may be my opportunity to score a hole-in-one.
Alan’s Story: One Month Later
I will attempt to outline how COVID-19 has thrown a monkey-wrench at my life. Mother Nature has just made the light at the end of the tunnel a little bit dimmer. Despite my efforts to make Waldenstrom macroglobulinemia as small a factor in my everyday life as possible, COVID-19 has made it more of a problem.
After much thought, and in discussion with my specialist, we have decided to delay my May chemotherapy treatment until August. She agreed with me that, under the present circumstances, the risk of suppressing my immune system further and exposing me to the hospital environment was not a good idea and not one with which I was comfortable. So I will wait.
It is really difficult to maintain the kind of social separation which we agreed is necessary. Our family has been very understanding by picking up our groceries and doing any other errands that are necessary. I am able to get some of my exercise by avoiding the elevator and walking up and down the stairs to our third floor apartment thus killing two birds with one stone. Fortunately, I am an avid reader, and that occupies a great deal of my time along with cooking and baking. My weight loss is no longer a problem.
As with all things, this too will pass, and hopefully we can look back on this episode and be even more appreciative of our blessings.
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