The December appointment with my oncologist occurred almost exactly one year after the initial diagnosis: multiple myeloma, an incurable cancer of the marrow and blood cells that can be treated and beaten back at intervals but, jack-in-the-box-style, never shut down completely. During the previous twelve months I’d had the pleasure of: two fractured lower vertebrae; constant bone pain centering in but not restricted to my lower back and ribs; anemia and chronic fatigue; chest infections; epic nosebleeds (low platelet counts, very cinematic); significant weight loss; an addiction to prescription painkillers, plus severe side effects from the medications (thalidomide, high-dose steroids) used to treat the disease, including but not limited to: mummification of the brain, especially upon awakening, which dwindled over the course of the day to a persistent mental distraction; impotence, and not of the figurative kind; epic constipation and/or diarrhea, depending it would seem upon the cycle of the drugs and the moon; peripheral neuropathy (a continuous pins-and-needles sensation in the hands and feet progressing, as months passed, in intensity and range along through the arms and legs, remaining in some patients as a permanent condition even after medication is halted), and let’s not forget the mood disorders associated with those steroid doses: rage, depression, manic insomnia. All this in way of prologue to the most intensive treatment of all: a stem-cell transplant. Sometimes still misleadingly called a “bone marrow transplant,” this procedure involves filtering embryonic, and presumably cancer-free, blood cells from the patient’s circulatory system through a painless but tiresome process known as apheresis, storing those cells in deep-freeze before treating the patient to a single high-dose of chemotherapy (usually melphalan), calculated to annihilate all blood cells and do all but the same to the patient, at which point those stored cells are thawed and reintroduced to the patient by IV and allowed (one hopes) to flourish and grow and re-build the patient’s bloodstream cleanly, this all done under strict hospital supervision of course as the patient’s immune system is, for a period, non-existent and at great risk of severe and even fatal infection, as I had to learn the hardest way when friendly neighborhood bacteria ran amok in my gut, prompting hallucinatory fevers, GI blockages, three days of my intestines being slowly suctioned clean through a tube in my nose, red-green goop doing a conga-line in front of my morphined eyes.
’Tis but a scratch! The whole crazy thing actually kind of worked. When I was finally wheelchaired out of the hospital in July, patchy-bald and nearly translucent, initial tests proved me myeloma-free. But for how long, was the question. Per a flip of the coin, I received no follow-up (“maintenance”) therapy over the next six months, and enjoyed a drug-free waiting period. Slowly I began to feel like my old self, just regular-lousy. It was great! But always the wait for the other shoe. That’s what all the literature says: like Dr. Moreau’s stubborn beast-flesh, the myeloma cells inevitably creep back, only a matter of time. So how much had I bought myself? Six months? Ten years? None?
I was supposed to have gotten a clue at my appointment that December afternoon, but lab results from blood drawn days before were not yet available. Still, the doctor and I were not worried, general indications were very good overall. Afterward I caught the subway and emerged at City Hall, several stations ahead of my usual stop, just to walk south down Broad Street into rush hour as evening began, wanting to stretch my legs, put some of my returned energy to use, admire the lamp posts and display windows draped with holiday lights and decorations. My phone chimed before I’d gone very far. It was the doctor’s office, his chief nurse-practitioner, the results had just come in (“We didn’t want you to wait until tomorrow”): no trace of myeloma proteins. Clean blood. Clean urine. I was, six months post-transplant, officially in remission.
I was only on Broad Street in Philadelphia, not the Champs-Élysées, not Park Avenue, but for once it was the greatest street in the world. I went into a clothing store and bought the most expensive suit I could find. I called relations and friends. Then I continued to walk the rest of the way home, breaking into a little hop-skippy dance when I imagined no one was looking. Something of a recurring theme in these parts.
This was December 2005 – December 2006.
I’d been sent by my employers to a two-day conference in Baltimore: Technology in Education or some such, mid-winter, a total bore, but of course I didn’t have to pay for it, not the good dinners, not my room in a nice hotel by the Inner Harbor, I’d only had to keep myself from falling asleep in public. Now on the last morning as I began to pack for check-out came word of a major blizzard advancing up the coast, I was caught in the middle. The snow was already descending in force as my cab took me to Penn Station, the giant Male/Female sculpture out front almost lost in gusts, but Amtrak was still running, and my train north left without any particular delay, even as the storm increased in power.
This was the most pleasant train ride of my life. There was nothing more beautiful than being carried along the rails in that blizzard, in a comfortable seat, letting the worry rest upon someone else’s shoulders (there seemed no reason to worry at all), frozen marshland shuttling past, stretches of bay, rusted bridges, malls with lots scoured empty by the snow, everything transfigured beneath the fierce but (from my protected view) silent billows of white, as if these were all a procession of landscapes from various master painters. I was not on any medication, my joy was entirely natural. Or if there was any enhancement it came through my iPod, my love/hate relationship with that device now tipped decisively towards the former as I absorbed the soundtrack of this movie I was now featured in, what do I recall: Miles, Zappa, L. Cohen, Aphex Twin, Mozart, all sounding never better.
I’m not sure about much after the train ride, what conditions were like in Philadelphia, or how I got from 30th Street Station to my apartment. I only remember that I was privileged to see beauty in a storm, entirely divorced from harm.
This was January 17, 2008, you can Google the storm yourself.
Relapse was signaled by the return of severe back pain, co-workers fidgeting outside my office door while I howled in a crouch at my desk. Tests initially showed no evidence of the myeloma protein but my body knew better. Visits to the oncologist increased, once a month now instead of once every six. And the payoff came eventually, numbers rising like the curtain on Act II: the M-spike, the IGG level, the stubborn beast-flesh monster-mashing me up again. All that math I’d tried so hard to forget. Three years without meds, I’d been lucky. There was nothing to do but prepare myself for the renewal of treatment: drugs old (the rage-making steroids) and new (Revlimid, a thalidomide-derivative concocted specially for myeloma). Seemed like old times: venipunctures with the familiar butterfly needle, blood counts, the days-long wait for non-reassuring results.
After several weeks, in mid-November, a three-day bellyache led me to the ER, where the smart trauma surgeon on call understood that my intestines had ruptured, and got me under the knife pronto. For the next eight months I was the proud parent of a colostomy bag, tending it as one would a papoose, until the summer day when the same surgeon got me patched back up internally.
Of course, I still had the myeloma, still had to continue the meds that may well have been what blew up my colon like a stressed-out party balloon. And the constant ache in my bones earned me a renewal of my painkiller prescription. Percocet, Oxies….did I sometimes abuse these? You bet. I knew it was wrong and I did it deliberately. Those first weeks after intestinal surgery were the lowest of my life, never worse, and the pills were what kept me going. I’d take two or three 5-milligrammers at a time, I even dug up an officially expired bottle from my very first period of treatment, about two dozen 20-mg pills, the time-release jobbers, the all-day suckers as I liked to call them, I knew I’d been right to hang onto those. With one of the capsules dissolving lovingly inside of me, everything bad dwindled to a point and vanished: no worries, no cares.
Come on, judge me, I dare you. Judge us, the myelomaniacs, me and my myelomie-homies, with our gingerbread bones and Slurpee-fied blood. I’ve got the pills under control now, and a new drug, Kyprolis, seems to be doing what it was made for, beating my bad-protein numbers down almost to remission (never mind the new set of side effects), and I’m able to travel again, but let me tell you, when those opiates kicked in, I bobbed my head in recognition to every addict who ever lived. Of course you give up everything for this pleasure, this ultrasexual glow: there’s actual shit oozing from a hole in your side, your incurable cancer has returned, but the pills fix it so that you do not care, it even comes to seem pretty damn fascinating. That’s why they call it a fix. On the nod, on the sofa, with the iPod on shuffle, or a Tarkovsky movie unwinding its gorgeous long-take scenery on the flatscreen, at times it seemed to me that I had never been happier.
Autumn 2009 until the present moment
"Never Happier" is an excerpt from Joshua Roberts' forthcoming memoir, MARROW ME, detailing the incidents in Roberts' life after being diagnosed with myeloma, an incurable cancer of the blood. Joshua Roberts' fiction has appeared in AGNI, PHILLY FICTION, and other publications; his poetry most recently in ALABAMA LITERARY REVIEW. For more information, please visit joshuaroberts.com.