I think I’ve managed to post the actual recording here:
As part of my preparations for facilitating the upcoming aforementioned writing workshop, and for doing readings from my forthcoming book of poems, I’m experimenting with making MP3s of individual poems I’ve written about my illness and recovery. I’ve posted one to YouTube, and hoping this link will work:
Please let me know if you can access the link and hear the poem. It’s written in the style of Emily Dickinson, in case that’s not already obvious. It’s not in the book that will be coming out in February, but I’m thinking of including it in the readings I’ll be doing when the book does come out, since it resonates with many of the other poems (some of which also borrow Dickinson’s verse form). I’d love to get some feedback on this one; I’m still wondering exactly what it really means to write about myself in the voice of another poet, but in any case Dickinson has offered me one way of answering the question of how I survived what was a very bad medical situation.
I’m going to be co-facilitating a free writing workshop (for people dealing with illness, disability and recovery) that will meet every other Wednesday evening at 6:30 PM in the UC Davis Cancer Center (2279 45th Street, in Sacramento) starting Sept 12. If you are interested in attending, please send me an email at firstname.lastname@example.org for further information. I’m excited about this opportunity to help people who may be going through what i’ve gone through.
Just a quick post to let people know that my book of cancer-related poems, “The Scars, Aligned,” has been accepted for publication from Finishing Line Press, a literary publisher in Georgetown, Kentucky! You can check the press out at https://www.finishinglinepress.com
I am overjoyed, of course, but also a bit daunted by the work that lies ahead to make sure the book is in its best possible shape. Thanks to all who have helped and supported me over the past 3+ years both in person and through media like this one. I hope to have more news on this score soon, but for the time being I simply want to make this announcement, by way of making it all seem more real. It’s hard to believe that, after all I’ve been through, that I am still around to experience the joy of having a book accepted at all, let alone by such a professional outfit.
It’s about time for a quick update on my medical situation, which I hope will be my last for a long while. I had been planning to have a second corneal transplant (in my right eye this time) in October, but some low white blood cell counts made that inadvisable; it would have been elective surgery, in any event, and my eye doctor felt it would be better to wait till my immune system was more robust, which probably pushes the earliest date for this procedure into 2018. More worrying was the fact that my white blood cell counts had been steadily declining for a few months, and thus my oncologist wanted to see if there was an obvious reason for that phenomenon. I therefore had yet another PET scan (we’ve lost count, but reckon it was my tenth) and another bone marrow biopsy (my second, and I hope my last, since they really hurt). Neither showed any signs of recurrent lymphoma (B-cell or T-cell), nor any other indications of something sinister brewing. They ruled out lymphoma after the scan, and the biopsy revealed nothing resembling leukemia, which was certainly good news. There was no clear indication of what caused the dip in my WBC counts, which may have contributed to the very bad stomach upset on Hallowe’en (it felt like food poisoning to me) that sent me to the hospital for a couple of nights. After some neupogen (a drug which, when injected, boosts white blood cell production), my WBC counts have stabilized somewhat, though they remain a little below normal, and it seems that there is no cause for concern for the time being. Needless to say, I am relieved that this episode seems to be over; I have been lying low in recent weeks, in part to minimize risk to my immune system, and in part to brace for potentially very bad news that, thankfully, never came. I am eager to resume normal activities, such as they are in my very different post-transplant life, and am looking forward to a reasonably calm and pleasant holiday season. So Happy Thanksgiving, everyone; in case of scarcity, you can add an extra dose of gratitude to the mix on my behalf.
Here’s an update on my current condition. As most of you know, I’ve suffered two types of lymphoma over the past two years. I’m now happily in remission from both, but the ongoing effects are considerable.I suffered acute graft-versus-host disease after the stem cell transplant I had in January 2016, with severe complications in my gut and (most surprisingly) a complete loss of vision thanks to corneal scarring. My vision has gradually improved since then, and in June of this year I had a corneal transplant in my left eye, which has improved my vision to the point that I can read and write again, though it’s not easy. I continue to take a lot of medications and undergo treatment twice a month to control my chronic graft-versus-host disease, which causes ongoing gut discomfort and low energy.
I have taken disability retirement from Sac State and have no plans to return, preferring to focus on my roles as husband and father, as well as to explore a variety of short- and long-term writing projects. I have good days and not-so-good days, physically and otherwise, but the former are outnumbering the latter by a widening margin. My levels of strength and energy are vastly improved from a year ago, though not by any means back to pre-cancer levels. Most importantly, I am very glad, very grateful, and very lucky to be alive.
Note to Day +17 self: what kind of hubristic statement was that? It turned out that I had a lot to worry about on Day +18: a seemingly interminable bout of gastrointestinal GVHD that left me completely exhausted and desperate. It had seemed so obvious that I had GVHD much earlier, but the one doctor who mattered was still saying no; is this new symptom really going to convince her? I told my nurses, and one of the junior attending oncology fellows, my tale of woe with what I’m sure seemed like pathetic self pity, but they listened respectfully and promised me that they’d advocate for me when the oncology team met.
And here, in this moment of intense discomfort, I had one of the more bizarre and intense of my very recent experiences with painkillers (and the effect of withdrawal from them), since some have asked me about that. Normally, the worst they do is make you tired, so it’s hard to focus on anything. Yesterday morning, however, when I was no longer under any drug’s influence, be it painkiller or sedative, and instead was in the grips of and endless rush from bed to toilet, something in my own obsessive literary education took over my thoughts, so that I found myself being lectured by what seemed like the ghost of Ted Hughes, the talented, charming, but rather violently obsessive poet who married Sylvia Plath (who ended up committing suicide, as did his second wife). Anyway, this ghostly Hughes really had a lot to say about many of his best early poems, criticized the way I’d been teaching them, and then went on to lecture me about the role of brotherly love in Norse Mythology, as if my failure to address these mythological narratives in my blog or poetry were somehow a personal offence to him. This kind of thing doesn’t happen to me in periods when I’m not taking painkillers on a regular basis, and clearly my body was angry with me for not giving it the “fix” it wanted; these drugs can jump you even when you’re in withdrawal from them.
Anyway, as these nightmares were going on, well into the morning nurse changeover, a nurse popped her head in and announced that I’d be starting on steroids for my GVHD, just like that. Instead of feeling fearful at the confirmation that I had GVHD, I felt like shouting my vindication to the skies; very much the same way I felt when I was finally diagnosed with lymphoma, after months of private certainty on my part, and official hemming and hawing from my first oncologist. I wasn’t just inventing scenarios to gratify my fatalism; I had educated myself enough to know, in all probability, what my symptoms meant, and now the medical establishment had committed to working with me to address them. As numerous doctors and nurses have said to me since, I’m evidently the leading expert on my (admittedly unusual) type of lymphoma.
Anyway, what it boils down to right now is that I am already feeling much better, both physically and mentally, now that they are actually treating my condition. Nobody is sure when the tummy troubles will go away (I can assure you they’re still around), but a discharge on Tuesday or Wednesday could still be on the cards. As long as no new GVHD flare-ups. As my nurse said today, all the types of GVHD that I’ve had are curable and reversible. However, the list of non-acute GVHD manifestations is a short one, and I have pretty much exhausted it; if we can stop them in their tracks here, the fact that I have had them at all will actually be strong indicator that my new immune system is behaving rightly: like a well-trained guard dog, it is willing to attack anything it perceives as an intruder (including lymphoma). The more acute types of GVHD (more stubborn gastro problems, damage to liver or kidneys) do not have any upside of the “what doesn’t kill you make you stronger” type; like an abused or incorrectly trained pit bull, they are just bad news, pure and simple.