Some four years ago, at the age of 70, my wife and I pulled up stakes and left Iowa, where we had resided for 32 years, to move to the State College area in Pennsylvania. This would allow us to be more active participants in the lives of our two grandchildren. As well, it would put us a little closer to some help from family in case any was needed. A few months after my arrival, I got some rather jarring news – my new primary care physician (PCP) had decided that some of the anomalies in my blood counts called for a referral to a hematologist.
I was formally diagnosed with WM on November 3, 2015. I am not sure if I am unique or typical in having preserved the precise date, but it did seem to me a watershed moment, and nothing since then has occurred to change my mind.
The hunt to discover why I was experiencing low red blood cell counts took almost a year. In a cycle no doubt familiar to other Waldenström’s patients, I went through several colonoscopies, an endoscopy, and other fruitless investigations looking for possible sources of anemia. Thinking back on my health history, I had some early hints of problems when I resided in Iowa. I had been a blood donor for over twenty years, and never had any issues qualifying for donation. In early 2012, however, my red blood counts were occasionally turning up low. My Iowa PCP and I discussed a recent report that long-term blood donors occasionally developed anemia symptoms. However, since I had been almost exclusively a platelet and plasma donor, he did not feel that this was an avenue to pursue. After my numbers appeared to rebound, he suggested it was too early to investigate and I agreed. Apart from an otherwise unremarkable case of hypertension, my health had been excellent my entire life.
Finally, in the fall of 2015, I had a bone marrow biopsy, and the suspicion was confirmed. I was now on that journey so familiar to all of us — the hunt for a course of treatment that would match up with the unique parameters of our individual case of Waldenström’s and would prove effective in driving activity of the lymphoma down to a manageable level. Although I live far from any major metropolitan area, it was my good fortune to find a hematologist in my locality who was familiar with Waldenström’s and well-informed on the latest treatments. In addition, Dr. Wolfe (since retired) was the perfect mix of sympathy, candor and good humor. He did not minimize the gravity of the diagnosis, but he was certain we could deal with the beast, and his optimism was irresistible.
Like many patients with a rare or unusual disorder, I have taken some pains to try to understand just what is ailing me, though in my case I confess I am no expert in matters of biology and medical science. Nonetheless, based on my reading and other study, I suspect I have been fortunate and have contracted only a moderate version of the disorder. The high point of my blood viscosity was 4.1 and my highest IgM was 6020. I have experienced some minor neuropathy, but aside from continuing problems with fatigue, I have had no instances of the more debilitating WM symptoms. And I had just one serious episode of anemia, which was addressed with iron infusions.
I imagine many of my fellow patients have experienced the same feelings as I during treatment: a suspicion the whole process is some sort of science experiment in which we get to be the rat. As we all understand, until the recent introduction of the oral drug Imbruvica, most treatment of WM took the form of chemotherapy. In either case, it cannot be denied that there is an element of trial and error. In December of 2015 I first tried Velcade (bortezomib). It did not work, and that therapy was dropped after two months of administration. Then I was put on Imbruvica, and presto!, things started to improve immediately, though I do confess the monthly hit on my finances was a real eye-opener. I could afford what was potentially life-saving therapy because I was a prosperous retiree with Medicare and a decent Part D insurance plan. What about that large number of people my age trying to get by on just their Social Security?
I remained on the Imbruvica regimen for the next year and a half. My doctor and I tried a one-month hiatus. My numbers shot up immediately, so I went back on the pill. By the fall of 2017, my IGM was 2062, my blood viscosity was normal, and I was feeling as well as I had in some time. At that point I got a rude awakening in the form of a diagnosis of atrial fibrillation. I had gone to a walk-in clinic on a Saturday with a terrible cold. The next thing I knew, I was in the hospital. It was then determined by my cardiologist and my new oncologist that there was too much chance my a-fib was a side effect of Imbruvica, and it was immediately discontinued.
There I was, back at square one. First, we tried two months of Rituxan but that led to no improvement. Currently, I am on a six-month course of Rituxan combined with bendamustine. My IgM is down to 2782, so it appears that we may be on the right track. I will say that I have been spoiled up to this point by the rather benign experiences with my treatments. By contrast, the side effects of bendamustine, while not debilitating, have been marked and unpleasant, including GI upset, fatigue and skin rashes. I can’t deny I found it discouraging to give up an apparently effective therapy only to start the search over for a new one.
All that medical stuff is much a part of the Waldenström’s effect. We become students of this malady and historians of the ups and downs we have encountered in trying to deal with an illness that is going to stick with us for the rest of our lives, and for which the only solution is that unsatisfying answer, “manageable”. It would be nice if there were a chance of slaying the dragon instead of having to settle for keeping it at bay. Of course, when we reflect, that should not seem so odd. We all understand that we cannot accomplish a life in any sort of finished, complete manner. We manage through it the best we can, day by day.
I am not entirely sure how to explain the impact that WM has had on my life outside the doctor’s office. My hematologist encouraged me not to take the news too dramatically and instead, to think about how we were going to work together to solve this problem. He spoke optimistically about the fact that the tool kit for dealing with this disease was a lot better than it had been just a decade or two earlier. Still, as we all know, “cancer” is a very sobering word, bringing to mind Dr. Johnson’s famous dictum, “depend upon it, sir, when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully.”
So, at such a point, convention says there are two options: 1) the infamous bucket list; and 2) the inspiration and insight that accrues from learning that one has contracted a serious illness. I confess I don’t put too much stock in the first, and I have mixed feelings about the second. My advanced age and the fortunate circumstances of my life conspire to mean that there’s not a lot left I feel I need to do. Would I like to continue enjoying my family, my friends, and my interests? Of course I would. However, I am not burning for a safari in Kenya or a trek to the North Pole.
As to the second point, I can’t say that I feel any wiser or blessed because of this experience. That said, I will tell anyone that I am much more conscious of how indebted I am to so many people. My gratitude would fill a catalog. My wife has been a steadfast support, my daughter is a great help and support in all sorts of ways, my son and daughter-in-law have stayed in close touch from their home in Minnesota and taken pains to keep me positive, my brother has continued his role as life-long friend and cheerleader, and my grandchildren have touched me with their concern and their continuous efforts to keep me cheered up. My friends have been unfailingly helpful and concerned, especially my fellow writers.
And it is the same with my professional medical support. My care team at Geisinger – the specialists, my PCP, and the nurses – has been knowledgeable, attentive and encouraging. I would especially like to salute the nurses who staff the oncology center, whose dedication creates an environment of compassion, hope, and concern. It could not be clearer to me – nor could I be more grateful – that I have an entire team of people helping me find my way.
There have been some changes in my life that I regret. Mostly I regret that I always seem to be tired now. I can’t do the sort of sustained work in the yard that I once enjoyed. I have learned to temper my ambitions, to divide chores into small slices, and to take a break between activities. I once was an enthusiastic hiker, another activity I simply cannot manage, so I content myself with shorter distances multiple times a day. My dog has been glad to help me out; that too is a blessing.
Though I spent a career in business (almost 34 years at IBM), I have always been a bookish fellow and I have been writing as a hobby for over thirty years. Somewhere along the line I got the poetry virus, and writing poetry became my principal interest. In the past five years or so, things have taken a distinct turn. Writing has changed from something I do when I feel inspired, to something I do as a matter of course every day.
From my earliest days I yearned to be an author. After years of indecision, in 2016 I published my first book (a collection of my poetry), and followed up with a second selection a year later. With the encouragement and assistance of my brother, I am wrapping up a memoir of our growing-up years, which I plan to publish in the next year. Various other writing activities continue to keep me fully occupied, and I can see the outlines of at least three more books in my head. In the long run, I don’t think it will matter a lot to me if I don’t complete these projects, but it would seem inconceivable not to have them in mind.
State College, like most university towns, is full of stimulating and interesting activities for those of us in our later years. I volunteer at the local public library and my church library, lead two writing groups, and teach a poetry course for the Penn State outreach program. I am also an active and committed member of the Pennsylvania Poetry Society, and regularly contribute to its monthly electronic journal of poetry.
I don’t know quite how to explain all this resilience. I can’t say with any confidence that it’s despite WM or because of it. I have always enjoyed being busy, useful and productive. Maybe I do have more incentive to stay busy these days. But what I do know is that staying active and engaged is the way that I want to live, and I am enormously thankful that I can continue along interesting paths with interesting destinations in sight.