SEPTEMBER 6, 2022 – (Cont.) At the outset of my current expedition, marathon, trip across the ocean, I’d formed four mental linear graphs by which to mark my progress: 14-days; 20-days; 30-days; and 100-days. Others exist beyond, of course—180-days, a year out, two years, and so on. But for now, in the midst of the “hardest part” of the ordeal, I’m focused on the four shorter terms.
Today I get to “color in” the first graph. The significance of this graph is that it depicts the average duration of the “crappy period” of post-transplant life; the “week to 10 days of feeling miserable.” And here I am, having felt miserable at one time or another, but nothing, apparently, that I wasn’t able to endure.
The 14-day duration is a function of the time it typically takes for white blood cells—aided by “grow factor”—to begin regeneration in sufficient volume for the body to repair itself from the horrific onslaught of the “dirty” nuclear bomb blast. The regeneration was kick-started by the 82nd Airborne’s deployment of previously harvested stem cells. This is all a great, miraculous operation to me, and however much it extends my life beyond what it would otherwise have been is a blessed gift, to be celebrated every step of my way henceforth.
Nurse Kaylen took a blood draw this morning at 3:30. I asked her to predict the WBC and ANC counts. She said “1.2 and 0.8,” respectively. I guessed “1.0 and 0.8.” It turned out we were both a bit too Scandinavian: the actuals were 1.3 and 1.1—up from 0.6 and 0.5 the previous day. Hemoglobin is up from 6.9 to 7.8—sufficient to sustain my walk of 14 laps around the floor later today without doing myself in.
But the 14-days is not definitive. As I’m discovering, the setting of the sun on the 14th day does not open wide the gates into promised land. More steps are required; more grit, more strain . . . more patience.
A dry, nettlesome cough continues, despite a panel of respiratory tests that came back negative, an x-ray, similarly negative, and the report of one nurse after P.A after doctor listening carefully through a stethoscope and reporting, “All’s clear.”
The rash: still god-awful to look at. Twice a day, a nurse covers it head to toe with a steroidal cream that’s supposed to alleviate the worse of it, but thus far, I see no improvement. More accurately, I see no improvement because I can’t stand to look at, so any near-term improvement will go unnoticed by me. Since my built-in Halloween costume doesn’t itch or hurt, I must rely on the Doctor’s assurance that it will soon fade, then vanish. While I wait, I’ll have to avoid all public appearances . . . Wait. I already have that drill down.
Which brings up the biggest downer of the day: the doctor’s caution again much interaction with people—by Beth or me—for many months to come. This sounded inconsistent with prior advice and left us wondering exactly how strict we’ll need to be, not only over the course of the next two bars of my bar chart—20-day, 30-day—but the longer haul: 180 days and one year. The prospect of living in lock-down mode for that period is a serious blow to the psyche, especially after three years of Covid-isolation.
It’s a bit like approaching Heartbreak Hill and hearing in the headwind, murmurings that after reaching the Pru, I’ll have to walk 10 miles in the rain to retrieve my gear, shelter, and a ride.
But that’s for then. What’s for now is closing down mile 14—post-transplant Day 14—and looking ahead to continued progress along the course. (Cont.)
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© 2022 by Eric Nilsson
4 Comments
These ups and downs can be so tough! Your’e doing BEAUTIFULLY. Hang in there and try to focus on what’s in front of you. That is succeeding wildly. Sending love…
Thank you so much, Gretchen. — Eric
It’s the journey and what each of us learns from it that matters.
My own 18 day journey at Fairview Southdale on Jan. 1, 2021 began with me “presenting” to an ER doctor as a then-71 year-old who thought Ronald Reagan was still President. The ER doc (who I could not identify or even tell you if they were male or female) probably thought I was suffering from a stroke, just plain demented or experiencing one of many other cognitive-related illnesses. They of course tested me for every possibility, mostly by analyzing my blood – all negative. I very vaguely recall being given a standard Montreal cognitive test (top score 30) on which I first scored a 5. I was sent for an MRI early on – a brain tumor was a possibility – and I experienced what I’m sure was a hallucination. As I was wheeled down what looked like the basement of an old building – cobwebs everywhere – by a fellow that looked for all the world like the janitor, I finally climbed into a bizarre machine and was given an MRI. I then remember being wheeled back and mid-stream, hopping off the gurney and hurling for all I was worth.
Long story shorter, I did improve with treatment (IV steroids, plasma pheresis). My “goal” to get released was scoring at least 26 on at least one of the Montreal tests that were administered during the 18 days of my stay. Sometimes it was a neurologist, sometimes someone with occupational therapy, but I was given a Montreal at least every day and slowly climbed the mountain. Sometimes the questions were the same as a previous one – still I was stumped on a given day, but finally I got a 27, then a perfect 30 on day 18 and was released to my apprehensive spouse Suzanne. Susie had not been allowed to see me during my admittance – it was the height of COVID – and she was worried about my condition and her ability to care for me. A few rough spots, but I was cured.
The experience in the hospital was something I wouldn’t trade away for anything. I got to meet and learn about such an amazing group of professionals that any misgivings I had were washed away. And I got over (totally) my fear of needles and “procedures”.
Paul, thanks so much for sharing this remarkable story. You had to be in the worst grip of fear and despair life could’ve dealt you. Who would’ve thought–in the course of all those meetings of our title standards committee, in which you were so cheerfully sharp and “with it”–that such misfortune would fall up on you! Your story is a huge inspiration to me and I’m sure, to the followers of this blog. You’ve always been such a vital, alert, positive person. Thanks again, Paul, for sharing. — Eric
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