I am home. After one hundred and eleven days in New York City for medical treatment, I am home.
Aura and I had no problem deciding to leave home. We had done the research. New York City was clearly our best option for my stem cell transplant. It even felt exciting. A chance to live in New York City. I've never wanted to move there. An extended stay, on the other hand, felt right.
So what is it like to live in New York City after an allogeneic stem cell transplant?
If you ignore the first-rate medical care, it is quite possibly the dumbest place you could find yourself. The best place for a mutiny of immunity. After transplant, one is supposed to avoid crowds due to a less than infant-esque immune system. When I was discharged I met more people on my way from Sloan-Kettering Cancer Center to the Hope Lodge than I did in my first eighteen years of life in Montana. Hope Lodge neighbors Penn Station, one of city's busiest and homeliest transportation hubs, and Times Square, God's obverse to the Garden of Eden. My new home for three months of healing was basically the equivalent of a Holiday Inn inspired, immune system bomb shelter with visiting hours.
Inside our beige bunker we tried to make a home, but the industrial strength smells of cleaning products, pungent odors of my pharmaceutical creams and ointments, and the nightly hum of generators from the rehabilitation of Madison Square Garden, continually impeded our homemaking. Our room featured a sporadically functioning television, an obligatory floral painting, a plastic-y pelvis cracking armchair, a desk, a closet, a bathroom, an errant air conditioner, and -- our biggest frenemy -- a king-size bed. This wonder bed would serve "octamerously" as the bedroom, living room, den, office, clothesline, closet, and, on illegal occasion (food and drink were not allowed outside of the community kitchen), as a breakfast nook/dining room. Our backs paid the price for the misuse of this monstrosity, but at least we could turn over and rest them on it.
To wander into our floor's community kitchen was to find that other cancer riddled saps had been convinced to summer with us in this beige bunker, each with their assigned caretaker -- a wife, a mother, a sibling or a friend. As we nervously observed each other's deformities, silently submitting our guesses as to which cancer was to blame and, in some cases, guessing which person had the cancer, we microwaved our frozen entrees, dined on partially melted plastic tablecloths, and occasionally got to know each other, for better or worse. We dutifully exchanged stories of cancer doom and gloom, sprinkling in the occasional bloom. Where else would we begin? "I see your eyeball is missing, soooo... Why are yooouuu here?" We were drawn towards each other's stories until we were suddenly and dramatically repelled, left to return to isolation in our bunkers in search of solace and shitty cable. The bloom was so often dampened by the doom.
To wander from the lodge, one must merge blindly and bravely into the merciless commuter crawl of 32nd street. To the building side of these corporate hoards: the smokers, the homeless, the aimless, the tour-less and the scaffolding; and to the street side, New York City's least heralded tourist attraction -- heaping, stinking piles of garbage just begging for an alleyway. These sideshows accidentally forming something of a pedestrian expressway with unofficial rules for changing lanes, limited on and off ramps, a toll system (monitored by the homeless), cell phone usage zones and an oasis every block anchored by a Starbucks and/or a Duane Reade Pharmacy. I couldn't find a blade of grass, but I could see three H&M stores from my front door.
This was our temporary home, and for a while it seemed like we might not have the stamina to make it through Sloan Kettering's required minimum stay of one hundred days after transplant. Our actual home was as far away as my ambition, and the road to restored health was littered with treatment, taxis and tourists. No matter where I wanted to go, this road always passed by H&M and ended on the Upper East Side at Memorial Sloan-Kettering. No rest stops. Construction as far as the eye could see. It is in these moments, when you rear end New York City's cold shoulder, that you remember you were warned as often as you were enticed. Growing up, my mom, my grandma or my aunts -- or my mom, my grandma AND my aunts -- had this "country craft" saying on their walls: "Home Is Where the Heart Is." More than a month out from transplant, I could find neither home or heart.
Then something amazing happened. Saliva met Prednisone. It was teen love, and it finally granted me a license to drive. Moisture returned to my mouth, and ungodly energy returned to my body. I began to eat again. I began to walk again. I had the strength to hold my phone again. I gathered my sense of humor again. I wanted to watch another episode again. My heart was beating through my chest again. I was filing bills again. And I was devastating bag after bag of pistachios for what felt like the first time, every time.
So I put on my mask and gloves, and we wandered out and over that cold shoulder. So what if my immune system would keep us away from museums, galleries, restaurants and bars? As long as I stayed healthy we had two months to dedicate to a kind of slow outdoor tourism one could never enjoy with a job. What we found was a New York City brimming with unprecedented life. People and parks, art and architecture, history and mystery -- all punctuated by time with friends and family. I was waking up at 7am, heart fluttering. So, I offered my shaking, Tacrolimus riddled hands to the production of egg sandwich after egg sandwich. I abandoned my sweats and slippers, in favor of the bennies of tenny... runners. We walked and gawked and talked, and suddenly -- subtly -- I began to heal. I began to feel at home.
There is a song by the band Wilco entitled Radio Cure. Aura happened to play it tonight. And I'm struck by it, again. Its lyrics are somewhat obtuse, but tonight they are hitting at the right angle, speaking to something of our time in New York:
honey I hope you can
there is something wrong with me
my mind is filled with silvery stuff
honey kisses clouds of fluff
shoulders shrugging off
honey I hope you can
there is something wrong with me
my mind is filled with radio cures
electronic surgical words
picking apples for the kings and queens of things I've
distance has no way of making love
Jeff Tweedy might as well sing, "Distance has no way of making home understandable." After all, home is where the heart is. I've been sick, picking apples for the kings and queens of things I've never seen, and will -- almost certainly -- never understand. Still, with the right synthesis of saliva, Prednisone, Aura and New York City -- I stumbled once again on gratitude.
I remember where home really is, because I still know what love is, even though I don't understand it.
I am home. Back in Chicago. Gathering my wind from the Windy City. A second chance from the Second City. After one hundred and eleven days in New York City for medical treatment, I am home. I love it here. And I'll make my home wherever my love is.
*The opportunity to stay at the American Cancer Society's Hope Lodge was an incredible gift to Aura and me. Without their provision of one hundred percent subsidized housing for patients whose best hope for effective treatment is in another city, We would have been severely financially ill equipped for transplant in New York City.
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