I’m going back back into the hospital again, this time as an outpatient. I’m having ECP, i.e., extra-corporeal photopheresis, a routine treatment to degrade my Graft-versus-Host Disease (GVHD)* [1][2] by neutralizing the hostile T-cells generated by my new immune system, cells which still seem to be intent on attacking the rest of my body. It’s the treatment that, I gather, saved my life: I remember the day when Dr. Siddiqi came in to tell me that they wanted to try it, a new idea, an experiment to try and curtail the civil war raging inside me. It had been a last-ditch effort to fish me out of the drain I had been circling for a while, and had, it seems, already begun to go down. Now it’s just another early-morning appointment for me to keep. I am also, significantly, walking here on my own. I’m still visually impaired, having had my corneas scratched up by the case of acute graft-versus-host-disease that nearly killed me six months ago, but I have regained enough vision and strength to be able to walk the mile or so from our house to the West entrance of the hospital. I have made it, with my white cane leading me on, both as a prop to let others know my vision is still worse than normal and a probe to detect obstacles.
Given how far I’ve come from my brush with death in the transplant unit, I should be feeling triumphant, but I’m not. Yesterday I got a phone call from my BMTU nurse coordinator, Sally. As soon as she started to speak, I got a bad feeling.
“Hi Brad, it’s Sally.” By now, I had a private little motto: “if it’s Sally, it’s serious.”
This was even more serious than usual. Sally told me that I have contracted a second kind of blood cancer: B-cell lymphoma, as a result of the Epstein-Barr virus. My stem cell transplant has left me vulnerable to a virus that most people have lying dormant in their bodies, but which in my case has been awakened by my immune-suppressed state. It seems that the T-cells that would normally keep the virus at bay have been killed off by the very same photopheresis treatment I am going in for this morning.
The usually competent, all-knowing Sally had not received a directive about whether I should even be getting photopheresis anymore, and she advised me to show up this morning while she tried to reach my oncologists. She sounded so sad and fatalistic that I didn’t press her for an answer, and so in the absence of a clear medical opinion, I am keeping my appointment. It’s what I do, even against my better judgement.
At least I have poetry for consolation; the many poems I memorized when I was teaching have offered me some solace during the past two years of so, when cancer gradually took over my life. For some reason, I have W.H. Auden on the brain this morning, in particular his poem “Musée des Beaux Arts”:
About suffering they were never wrong, the Old Masters;
How well they understood its human position…
How it takes place while someone else is eating,
Or opening a window, or just walking dully along.
Why am I reciting this to myself? Maybe it was seeing the vague shadows of two people as I walked in this morning. I could tell they were old by their voices and gait. They were like strangers from another planet, who didn’t belong on mine, a planet where people die in middle age.
How, when the aged are reverently, passionately waiting
For the miraculous birth, there must always be
Children who did not specially want it to happen…
I think of my own parents, who don’t yet know my catastrophic news. My situation is at cross-purposes with Auden’s generalities, but his words have their own seductive logic that I might as well follow:
Skating on a pond at the edge of the wood.
They never forgot the dreadful martyrdom must run its course
Maybe I’m like the dreadful martyr in Auden’s poem, though I don’t know what spiritual belief I am dying for.
I arrive at the apheresis room. They weigh me, take my pulse and temperature, and we go over my arm-long list of medications. We’re going through the motions of this treatment, apparently. We even discuss my alleged allergies which, for reasons that pass all understanding, still include an alleged allergy to sodium chloride.
“I’m not allergic to salt,” I say, for what seems like the hundredth time. “I don’t know how that got into my permanent medical record. Someone needs to delete it.”
“Yes,” my nurse agrees, though we both know that nobody will bother. It will linger, uncorrected, in the hard wiring that entangles me every time I step back into the hospital. Well, I won’t have to be annoyed by that much longer.
In Breughel’s “Icarus,” for instance, how everything turns away
Quite leisurely from the disaster…
I tell my nurse about the confusion regarding my treatment. I know the medication they use for photopheresis is expensive, and I don’t want them to waste it if the treatment is inadvisable. I ask her to call my oncologist before we start.
She agrees, but since we need to do some labs, she accesses my double port. The port lies under the skin, and so she numbs the area with an injection of Lidocaine. The injection stings, and I try to distract myself from the momentary, intrusive pain by pressing the tips of my thumbs sideways into my fingernails, producing a parallel discomfort whose intensity I can control.
The ploughman may have heard the splash,
The forsaken cry, but for him it was not an important failure
After the Lidocaine come the big needles required for photopheresis. These must be inserted forcibly into the plastic lump that bulges slightly under my right collarbone, and so I brace for the pressure.
“Take a deep breath.” My nurse gives her orders in an encouraging, friendly voice, as if to a nervous child. “Hold it.”
I don’t know why this breathing protocol is necessary, but I comply.
The sun shone, as it had to on the white legs
Disappearing into the green water…
I retain the air in my lungs successfully; the left lung—the one that was once drowning in blood, fluid and toxic cells from the cancerous tumor that announced my cancer was real—now holds its fill comfortably enough.
“Breathe out.”
I wait for a beat before I exhale, just to show that I am in control of this small part of my physical being. Yes, I can still hold my breath.
And the expensive, delicate ship
That must have seen something amazing…
She draws my labs, filling little tubes for the endless, countless tests that need to be run on my once-more corrupted blood. The expensive, delicate machine beside me has started its loud, preparatory invisible movements. It has to warm up for quite a while before the treatment can begin.
A boy falling out of the sky,
Had somewhere to get to and sailed calmly on.
So that’s me, just another little Icarus plunging to my death from a great height, my wings melted by the sun’s life-giving rays. And, as Breughel and Auden agree, nobody gives a crap.
I turn my phone back on and start listening to the title track from Dire Straits’s Brothers in Arms. The understated, mournful guitar and hushed voice seem to suit my mood.
I think of my brother James, whose arm was pierced to harvest the millions of stem cell I needed to survive even this long. He did not desert me, but here I am again, dying once more of blood cancer. I think of his sadness, his disappointment in realizing that his generosity, his sacrifice wasn’t enough to save me.
Now nothing seems to makes sense, nothing matters, there’s nothing to be done. We might as well proceed with this possibly counterproductive treatment. At least I might get a nap in.
We are just about to get going on the photopheresis when my nurse’s Vocera alerts her. My oncologist is calling. They talk briefly, just out of my earshot.
“You were right,” my nurse clucks. “Dr. Romano agrees. No point in doing photopheresis today. He wants to see you tomorrow.
“I figured.” I act as though this verdict, which to me only confirms the death sentence I am under, was a sort of victory. “I’m going to need all the T-cells I can get, to try and fight off the B-cell lymphoma. Why kill any more of them off?”
“Yeah,” my nurse agrees. She detaches me from my formerly life-saving device and shakes her head. “Things can get pretty weird sometimes.”
They sure can. Former enemies become friends, allies against a new, more threatening foe. Such are the fortunes of my ongoing war with cancer. It’s a war I know I can never actually win, in which a queasy truce is the best I can hope for.
As I listen to the Dire Straits song on my walk home, one line strikes me, gently but overwhelmingly:
So many different worlds…
No kidding, I say to myself. No kidding. My world is totally different from my nurse’s, my doctor’s, my wife’s, my daughters’, and even my brother’s. Blood-brothers in every sense, we cannot face our separate destinies together. I am alone here in this poisoned carcass-to-be, trapped inside a collapsing cubicle of air. When I fall, there won’t even be a satisfying splash.
I want to write a poem with this as a first line. I want to protest against the bystanders’ indifference that Auden’s “Musée des Beaux Arts” dramatizes. I stop on the bench by the light rail station, take out my pad of paper and black sharpie. I write in a dark, massive, blocky scrawl that I hope to be able to decipher afterwards, with some help from the graduate student assistant I pay to come and help me once a week with my writing and email.
So many different worlds
I cast about for a second line to fit the first, but find nothing. So maybe I need to contradict it instead? Let’s see how this sounds:
So many different worlds
Have no right to coexist
This angry objection, however, goes too far. I don’t want to annihilate the nice old people I saw on my walk in, do I? They have a right to coexist with my world of undeserved suffering and premature mortality. But screw it, what’s written is written. I’m just glad to be writing something resembling poetry again. So I go on to contradict myself yet again, Walt Whitman-style.
But their collisions are atrocious
Yes, this is true enough. Wars, where the boundaries of different worlds get worked out when diplomatic negotiations break down, are horrible. Likewise, violently intruding into others’ private lives as I walk past them in the street would be messy, wasteful, and probably injurious to my own health. Let the human traffic go on as it must; I will stumble on my heartbroken, sick-assed way back home alone and disconsolate.
I am not ready to call my parents, not yet. I want there to to be a plan for treatment, however hopeless it may be, before I share my latest terminal diagnosis. It’s easier to keep the news to myself for now. Besides, I need to work on my poem some more.
Before I can berate my muse for its sluggishness, the last line of my quatrain presents itself as an obvious statement of fact:
Most prefer to die in peace.
I write it down. I’m at the bottom of the page already, so if I want to write any more I’ll need to turn to a fresh one. I sit for a few more minutes, wondering if any new phrases will come. I silently mouth the four lines I have just written.
So many different worlds
Have no right to coexist,
But their collisions are atrocious;
Most prefer to die in peace.
I don’t seem to have any more to say on the subject. These four lines form a perfect, self-enclosed thought, and I am suddenly too tired to want any more. This is enough.
So many different worlds
Have no right to coexist,
But their collisions are atrocious;
Most prefer to die in peace.
I suspect that even this truncated, giant-lettered text is illegible, but it doesn’t matter. I have already memorized my latest epitaph.
___
Note: * Graft-versus-host disease (GVHD) is a potentially serious complication of allogeneic stem cell transplantation and reduced-intensity allogeneic stem cell transplantation. It occurs when the donor’s T-cells (known as the graft) view the patient’s healthy cells (known as the host) as foreign. While GVHD can be mild, moderate or severe (in some cases it can be life-threatening), there is no standard regimen for the prevention of GVHD. Patients are generally treated with increased immunosuppression steroid medicines. However, if steroids are unsuccessful or are not appropriate to use, other treatment options are available.
Reference
[1] Ramachandran V, Kolli SS, Strowd LC. Review of Graft-Versus-Host Disease. Dermatol Clin. 2019 Oct;37(4):569-582. doi: 10.1016/j.det.2019.05.014. Epub 2019 Jul 10. PMID: 31466596.
[2] Moreno DF, Cid J. Graft-versus-host disease. Med Clin (Barc). 2019 Jan 4;152(1):22-28. English, Spanish. doi: 10.1016/j.medcli.2018.07.012. Epub 2018 Oct 9. PMID: 30309668.
Featured image: Doctor supporting patient. Photo courtesy: © 2016 – 2023. Fotolia/Adobe. Used with permission.
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