Lessons From Living, Dying and Living Again
Chapter 4 (preceding chapters are posted below)
Neutropenia
It wasn’t only my blood levels that were skipping madly all over the place, my weight was on the move, too – down – indicating the cancer was now fully alive and awake. I’d always been a skinny boy back in the day when I could climb towering pines to the very top and sway in the wind or slip down a street sewer drain to retrieve a wayward baseball. (We lived in a hilly urban place and were always chasing balls down streets.) I grew to be 6’2” and weighed 177 pounds on my wedding day. I moved up from there, and I don’t mean in height. My waist bands tell the tale. As a basically oblivious chubby hubby who celebrated each noontime with a chili dog and fries at Duchess, I made it all the way up to 228 pounds, with a waist measurement of 40 inches on my trousers, before I was brought to my senses. It was at this point when, in a conversation about I don’t know what, my sister Laura said to me, “You’d probably make a really good gravy,” and instead of snapping back with something hurtful and untrue, I took her observation to heart and soon got down to around 205, where I stayed for a very long time. I had 38/32 pants in every color, fabric and style, flap-in-the-breeze wide or stovepipe narrow, pleated or not, cuffed or uncuffed. But now, in the fall of 2022, I found myself doing something brand new: losing weight without even trying. There are lots of different ways cancer, and its treatment, can cause weight loss, so I’m not sure what was at the root of mine, but I soon was down to 195 with many more stops to go, especially post-chemo and post-hospital, before I was to bottom out a year later at a skinny-guy-on-the-beach 156.
In any event, my weight loss was of interest to me but not a major concern as we mapped out a strategy that might come to the aid of my runaway white blood cells. According to Dr. Chang, the right move would be to put my myelofibrosis on the back burner for the moment and try to halt the leukemia aggression with a series of chemotherapy blasts. I didn’t know how possible this would be to pull off. Myelo did not seem to like being ignored or given back-row status. But the numbers were telling a story. Chemo seemed like a logical next move. It’s what everyone did once the cancer had gotten to a certain point. We took one last blood draw on October 4, just before the infusions were to begin. White blood was at an unsustainable 35.9, red blood at 2.69, hemoglobin 8.1 and platelets at 297.
Receiving chemo introduced me to yet another room full of beleaguered fellow travelers. During my many visits to Leever, I’d been aware of the chemo room. I’d seen patients make their way through the regular waiting room with their tote bags or books or knitting. They were set on spending more time on the premises than those of us who were there for a simple blood draw or check-up. On my first chemo day, also October 4, I was ushered into a long, narrow room with recliners lining each side wall and a space at the rear for the nurses. About half the recliners were occupied. Most of the occupants took their medicine without comment or conversation. I was in line for a major dose of bendamustine-ruxiumab with another, less powerful, course planned for the next day, and then a once-a-month schedule after that. My affection and admiration for the chemo nurses was immediate. I didn’t get to know any of them, my stay was too brief, but their ability to care for and even cheer up a room full of very sick people was extraordinary. I passed my time with reading and wandering around on my I-Pad. I may have dozed off for a while. As I did, the poison that makes you better silently entered my bloodstream and went to work, like a rattlesnake making its way up a downspout. Its job was to kill – to wipe out the bad cells and even the healthy ones that got in the way. If cancer could be cruel, so could the treatments for it. The idea was that the chemo would lay waste to the CLL and give the good cells a chance to take over again.
The problem was that the chemo almost laid me to waste. I felt a little out of it after the first two days, but by the end of October I wasn’t doing well. The swollen gland had returned to its normal size, but my blood counts on November 1 were shockingly at odds with my pre-chemo numbers. Now my white blood, which had been nearly 36, was 0.9, red blood 2.75, hemoglobin at 8.1 and a newly key indicator, absolute neutrophils, was at 0.3 when the normal should have been 1.5 to 7.0. The neutrophils are a component of white blood cells. They are most important in fending off infection. Unfortunately, they weren’t very good at fending off bendamustine-ruxiumab. My resistance was suddenly at near zero. I was what they call neutropenic. If I got a cold, nothing would stop it from turning into pneumonia. If I cut myself while peeling potatoes for Thanksgiving dinner (it was coming up), I might have to go to the emergency room. So I had to seriously isolate. I was the boy looking out his bedroom window while all his friends gathered for a baseball game. “Can Charley come outside to play?” “Sorry, Jimmy, he’s neutropenic.”
We don’t have many family traditions, but the one I like the most is the gathering at our house for Thanksgiving. It’s always been my favorite holiday. It’s major, non-denominational, celebrated by all, often a four-day weekend, but it’s simple, too: giving thanks for whatever it is we have, or whoever we love, and who loves us. No presents, no overspending, no elves, no choking commercialism, no worries about having been bad, no novelty songs. And of course the meal, in all its simple glory, is front and center, and football is not invisible. For Thanksgiving 2022 we were to have a full, and fully masked, house – children, spouses, grandchildren, for now there were two, Claire and Peter’s son James O’Hanlon having entered the fray in late August. Also on hand – a tradition in and of itself – would be our old family friend Mike Meserole. Mike had been a great pal since we’d been high school classmates, and he the catcher and me the pitcher on our baseball team. He was John’s godfather, had attended hundreds of our kids’ games and events, babysat, tended to several household emergencies (usually involving a cat) and now, 58 years after we first met, here he still was, showing up at the front door with wine for Marcia and half-gallon of vanilla ice cream to augment the pies. It was a great day, but not everyone was able to be there. Penner, now 2, was showing what sports reports like to call “flulike symptoms” and had to stay home with her Mom, so as not to infect good old Pa (the name she’d given me).
And then began the long forced march to Christmas, and the hope at Leever that my blood numbers would slowly, on their own, make their way back to normal, or at least acceptable, levels. They didn’t. They continued to keep me inside and away from crowds. I could favor my inner introvert – no holiday concerts, no parties, no get-togethers of any kind. But at the same time, I thought there must be something else we could be doing – or not doing. Doctor Chang was maybe used to seeing the numbers recover reliably after giving chemo to patients who only had leukemia, but how about someone who also had myelofibrosis? Could the still very active myelo be hindering my chemo recovery? It was time once again to call in an experienced myelo hand. Paging Dr. Hoffman.
I was back at Mount Sinai on Dec. 14, a little over 13 years since my first, brief and only other visit. I was interviewed by a nurse practitioner named Madonna, who was pregnant, with Christmas coming, all of which I took to be very hopeful signs. Next, Ronald Hoffman came into the examination room, looked at me, and said, absurdly, “Oh yeah, I remember you!” It was good for an opening laugh and a feeling of familiarity, even though, unlike our first visit, everyone – patients, doctors, medical staff – was wearing a mask. The mask-wearing was tricky. I’ve always thought that so much can be learned in a medical conversation between doctor and patient by the reading of faces, on both sides. Now it was down to reading eyes and vocal inflections, maybe a little body language, too – an interesting new challenge.
Our conversation covered family matters (important in his sizing up of a patient) and football Sundays, then turned quickly to the matter at hand. My counts on that morning’s Mount Sinai blood draw were even worse than Leever’s (although as time went on, we learned there was an actual small variation in the machines at both places; Lever’s were always a bit more in my favor. We’ve never figured out which was the accurate one.). Doctor Hoffman said he’d want to consult with others in his department, but the time was probably at hand to deal directly with the myelofibrosis, which was worsening. My spleen was larger than ever (normal length is 12cm, mine was 25 cm), the pain was more noticeable, all the Magic 8 Ball signs were pointing to danger. The real fear was that at some point, getting closer, the myelo would somehow spawn the deadly acute myeloid leukemia and that would be it for me. And then for the first time Dr. Hoffman mentioned the possibility of stem-cell replacement. He defined the procedure as the only real cure for what I had, although not without the potential for calamity along the way. I’d read about it and heard about it almost in passing over the years. I knew it was out there as a solution and that it promised much if successful. I certainly had some Googling to do when I got back home. Doctor Hoffman said I should come back early in the new year for a real conversation and a decision.
I celebrated this fascinating turn of events in early January by getting COVID. Where it came from, we didn’t know, since I’d been isolating quite religiously. One Sunday morning I woke up with a ticklish throat and a slight temperature, and Marcia marched me off to the nearby walk-in clinic. They tested me, the results were positive, and, given my neutropenic state, they promptly fixed me up with a dose of Paxlovid. I went back home, spent a couple of days coughing, moping around and watching tsunami videos on YouTube in what had once been our guest bedroom – and that, to my great relief, was it for me and COVID. A bullet dodged. Had being fully vaccinated helped? I certainly thought so. Better a cough than a coffin they carry you off in, as I overheard someone say long, long ago. And maybe I’d be lucky and never get it again.
When Marcia and I returned to Mount Sinai later in January, a pitch was made more formally for me to consider stem-cell replacement, my condition’s only known cure. I was on the old side but fit enough to withstand the rigors, they thought. That made me feel kind of good. I had a solid built-in support system – family and friends – that would help me through. That made me feel very good, although I wasn’t sure how the doctors already knew that. They thought I had a sunny attitude – not true but I could probably fake it. The medicine, the technology, the skills at Mount Sinai were second to none. This wasn’t stated as such, but it was very evident to anyone who was paying attention: they were good at this. Not that the other treatment options for myelofibrosis listed in the hospital’s Allogeneic Transplant Consent Form were especially tempting:
– standard chemotherapy
– supportive measures
– no therapy to treat your cancer
– comfort care
– no supportive measures
In other words, poison and/or hand-holding. In comparison, the thought of stem-cell replacement was appealing to me. It was risky, but it was a yes-or-no solution rather than a bleary, drug-addled prolonging of my days. I will say that my confidence in the procedure got a healthy boost as soon as Dr. Hoffman introduced Dr. Alla Keyzner into the picture. As he made the hand-off, it was clear that Dr. Hoffman had stepped back into a sort of emeritus role and was leaving the day-to-day in the hands of others on his team. It was Dr. Keyzner who went over the fine details of what was to come for Marcia and me. She radiated intelligence, confidence, enthusiasm and an utter familiarity with my condition and the proposed solution. Her Belarus accent added a note of intrigue to the plan. Her lavish use of her hands as she described intricate cellular maneuvering was endearing. I felt that if anyone could steer me through this thing, it was she. I put myself fully under her care without hesitation.
We tentatively set the date for June. The first order of business was to shrink my spleen down to a size that wouldn’t interfere with all that was needed to be done. For that, I was in April to start on a chemo pill called Jakafi (aka ruxolitinib). I would have to get clearance from my cardiologist and dentist that my heart and teeth could withstand the coming assault. And of vital importance was that we had to determine who my stem-cell donor would be. A major stumbling point during our interview with Dr. Keyzner came when Marcia could not accept that one of our children might be selected for this job. Part of this was an instinctive protective maternal reaction. Part was not quite understanding the transplant process, which had become vastly simpler over the years. The old way was to basically perform an operation on the donor, digging into the bone marrow for cells. The new way was not much more complex than an extended blood draw. Marcia relented when one of the kids a bit later told her that any one of them would be honored to be chosen as the donor. First, though, a match was sought on the National Marrow Donor Program. Among 41 million potential donors, nothing turned up, certainly no 100% matches. Next came a look at family members. My siblings, including brother Michael and sisters Parthy and Laura, although younger than I, were considered too old to be viable donors. Sister Susie, at 61, the baby of our generation, was a possibility. But younger is always better when it comes to bone marrow and stem cells, so John, Matt and Claire were tested next and each came in at 50%, same as Susie. And because same sex is preferred and youth is also favored, Matt, 18 months younger than John, was the lucky choice. He would get to save Dad and never have to buy him another birthday or Christmas present.
As all this was going on, however, my mother’s health was seriously failing. Rosemary Brady Monagan had been born in Bayonne, N.J., in 1926 and was now approaching her 97th birthday. She was an extraordinary woman of many parts. She was an accomplished singer and actor, an archeologist, an organizer, a very vocal and active Democrat (and for 14 years a congressional wife), an avid reader, a good plain cook, a devoted daughter, sister, aunt, wife, mother, grandmother and great-grandmother, and a true and loyal friend. She loved the stars and planets, the oceans, the mysteries of math and science (mysterious to me, not to her), and all creatures great and small, even microscopically small. She never met an infant who wasn’t beautiful, and who wouldn’t grow up to make the world a better place.
Her long life had taken her through much, beginning with the Depression and World War II, both of which ignited her lifelong interest in politics and also in saving tin foil. Within her own family, she was to be remembered for her fair-mindedness and patience, her love of travel, camping, gardening, Bach, difficult puzzles and good books, and also for her remarkable knitted sweaters and sewn dresses (including her own wedding dress), and memory for song lyrics, especially big-band music from the 1940s. Her 10 grandchildren will never forget the trips Baba took with them when they turned 12, to wherever they wanted to go in America—and which came to include Yellowstone Park, Wrigley Field, the X Games, Epcot and Mount St. Helen’s, to name a few.
Now she was getting ready to leave the beautiful blue sphere she’d loved so much. After my father’s death at 93 in 2005, she’d moved from a Georgetown townhouse into an apartment across the street from the National Cathedral and then to a retirement community called Ingleside at Rock Creek, in Northwest Washington. She’d started out in the independent-living wing, but recently had moved into the assisted-living quarters. From that new little home she monitored her vital signs and doctors’ reports with the heightened diligence of a NASA engineer. She grew certain that her doctors were missing important, obvious developments. Maybe they were, but in truth her heart was failing, and after a rough few final weeks she passed away on Feb. 23, 2023. By then, I was under strict “no traveling, no mingling, no shaking hands, no hugging” rules and thus could not attend the memorial service for my own dear mother except via a Zoom hook-up. It was terrible not to be there.