The Journey of Robert Seder
by Bob Seder and Jean Churchill

Six years ago Robert Seder finished To The Marrow, a narrative of his first bone marrow transplant; he died two years later of complications from his second transplant. I am his widow. Reprinted below are two chapters from his memoir, published this year by CavanKerry Press in their LaurelBooks Literature of Illness imprint, featuring poetry and prose that explore the many issues associated with confronting serious physical and/or psychological illness.

My husband was 44 when he was diagnosed with an aggressive form of lymphoma. The best course of treatment at the time was a bone marrow transplant that would require six weeks of forced isolation at the Dana Farber Cancer Institute in Boston, hours away from friends and family in New York. He was told that he would be a year in recovering and that the success rate of the procedure was only 50 percent.

Last April, CavanKerry Press and I brought his memoir to life in front of two groups of young medical students. Because I am a dance professional, I am familiar with the raw and unpredictable power of art. However, as I spoke my husband's words about his battle to beat cancer, I was unexpectedly moved by an extraordinary weaving of the realities of cancer care and the creative arts.

My first reading was followed by a detailed discussion, led by a prominent oncologist, about the prospects of current Lymphoma treatment options. We learned a little about what Robert might have faced if he had been diagnosed in 2006, rather than 1993. The medical students' comments moved from Robert's extremely specific narrative to the broader picture and politics of bone marrow transplantation (and back to reflections on what could have saved my husband's life). It has been four years since I lost him, but learning that they might have been able to save his life, "if only . . . ," took me acutely near the chasm of grief beside which many of us live. The future doctors and I experienced a poignant juxtaposition of highly medical, technical, oncological details with the raw experience of one man who very much wanted to beat cancer.

At a different medical school, on the same day, our reading enabled a different discussion about "humanities" and medicine: What does it mean for a doctor to be "humane"? I had chosen to read about the gruff, matter-of-fact nurse, with an abysmal bedside manner, who infused my husband with the drugs supposed to eradicate his cancer. The description of that nurse, and her IV tubes of poison, prompted a very personal response from a third-year medical student who is observing the inevitable toughening process that may or may not be essential to her survival as a doctor. She is afraid she will come to lose her grasp of her humanity, as had that chemotherapy nurse. How can an extremely busy doctor keep in mind, always, that each patient's encounter with a doctor is unique and very intense?

While few medical students spoke up during this discussion, it seemed that they were speechless not from apathy, but because they truly had no answers. The questions were very difficult. We faced, together, hard realities about being a doctor. What is the best way for medical schools to prepare each doctor to be a first-rate scientist and also a sensitive human being? What does it mean to be a "good doctor"?

After the microphone had been turned off, a young woman approached me. Through some shy tears, she described that her own husband may be facing a bone marrow transplant. I became, instantly, no longer a reader of a text. I put my inadequate arms around this young wife, said something inarticulate, and "Please stay in touch with me." We remain in contact through email. She and her husband may have to endure years like the ones Robert and I lived through. The enormity of our 10 years of fighting cancer was returned to me, another unexpected blast from a furnace. Here, before me, is another one who may be taken down to the gates of hell.

Cancer is among us, but so is the art of writing. Robert Seder lives his memoir To the Marrow. Because of CavanKerry's mission and with my help he also exists in real-time, real-life settings, with other human beings. I have received another farewell gift from my husband. His newest gifts to me are these opportunities to address the art of care-giving with future medical professionals. I have been thrilled to discover, in a way I never had before, an unusual conjunction of poetry, pedagogy, the abstract, and the painfully concrete. I have been extremely fortunate to try to "make flesh" the complicated miracles of medicine and of art.

—Jean Churchill

Day Zero
(Bob was admitted to Dana Farber on a snowy winter day. After he met his nurses, was taught the routines of living in a strictly sterile room, he was given three intense doses of "TBI" (Total Body Irradiation) and had pumped into is arm many bags of powerful chemotherapy drugs. The idea was to kill as many cancer cells as possible without actually killing him. "Day Zero" was the day that some of his own bone marrow, that had been treated and stored elsewhere in the hospital, was to be returned to him. —J.C.)

All morning I waited anxiously for my marrow. I did the yoga, bathed, Sandy changed the dressing on my Hickman site. Jean took Clare to day care and came straight to the hospital to be here when the marrow arrived. When it did, the attending physician, the fellow, the intern, and Sandy came with it. The intern tacked a plastic bag with a syringe in it onto the bulletin board at the foot of my bed, and in the pass-through appeared a breathing bag.

Everybody was quiet and seemed pretty relaxed as Sandy hung the bag of marrow and attached it to the IV pump. Such a big deal, months spent trying to decide the best treatment and choose the hospital, but here this morning, it all came to a head in about 40 uneventful minutes. The reinfusion of the marrow is just like a blood transfusion.

Myth has it that the marrow circulates through the blood stream and finds its way back inside the bones where it belongs. I was Hansel and Gretel looking for a way out of the forest, and the 500cc of yellow pudding-looking stuff in the IV bag was my bread crumbs. I took a deep breath. Find your way home. Come back to me. I am home.

I sat in the only comfortable chair. Everybody else stood and watched, nonchalantly chatting but all the while watching me. A patient can have a sudden and violent reaction, though for most the process is as benign as it was for me. Just one more bag of fluid—this one the most expensive bag you can imagine. I tasted something funny and that was it. They say that you can tell a patient who has just gotten his bone marrow because the room smells of garlic from something in the preservative used in storing the marrow. I couldn't smell it. They could.

I tried to muster some appropriate enthusiasm for the fact of the event—this is the end of cancer treatment, the beginning of a life without cancer—but the reality of the moment, a simple infusion, lacked drama. Until the bag was running down to empty. Then I felt a lightness, a tingling in the chest. And the assembled company felt something too because their chatter turned genuinely lighthearted. I sat up straighter. I felt in my chest the lightness of laughter. If I were going to stop breathing, I would have done that by now. Tick off another step to health. I joined in their lightness as best I could. Yes, oh yes.

More difficulty is to come. The most dangerous period, when my blood counts will drop to nothing, is still ahead. There is a lag between the treatment and when the circulating blood cells all die. By early next week I should have no counts left. There's another lag between the infusion of the marrow and when it begins to produce blood cells. We were by no means out of the woods, perhaps even deeper into it. But I could smell the bread crumbs, and right this moment I had my marrow back, and right this moment I faced no more treatment, and right this moment I felt light enough to float to the ceiling. Not giddy or high, but light. Well, I'd been puking my guts out, shitting buckets, losing weight, losing every hair, no wonder I felt light.

When the last of my marrow was on its way back to where it belonged, and I was still breathing and my heart was still pumping, they left Jean and me to ourselves.

Surely they had warned her in graphic and specific terms what might have happened. The syringe on the bulletin board was filled with epinephrine. They probably told her that if I stopped breathing they'd have to shove her out of the room and that she should go fast when told. But none of that happened.

We smiled, hugged, and sighed a long well-at-least-that's over-and-done-with sigh. Then I threw up.

Month Seven
(After Bob's transplant, his weeks of isolation, the many very slow weeks of recovery, he returned home. His life had become utterly transformed after the transplant. —J.C.)

My tale of woe, measured in bulk of pages, will never amount to much of a stack compared to the pile of bills. The battle has been joined for months and there is no end in sight. If at all possible, the health insurance company will screw up. I have come to believe that these are not mistakes; rejection is what they are in business to do. Strictly speaking, health insurance is a misnomer; we have none in this country. What we have is sickness insurance. Health, no. The auto insurance company does not insure you against safe driving, but against accidents. The so-called health insurance company is not in the business of delivering health care or of making health care affordable or even of making sickness care affordable. They are in the business of making money. They charge you premiums, and when you want some health care back, they are loathe to part with your money. We live under the illusion that they are taking a risk. It is not so much a risk as a bet. They take our money betting that we will stay healthy, and the only way we can cash in on the bet is to get sick. No sane person would call this health insurance. And the kicker is that when we prove to them that under their contract we are indeed sick, and they have to pay these hospital bills, and they do pay, they turn around and raise the premiums, up the ante. So much for risk taking.

I sound ungrateful. I am not. Our family is not in an HMO and in time the company is paying the bills, most of them. But I am sick. Why when I am weak and vulnerable do I also have to take on the enormous task of keeping the insurance company honest? I work two part-time jobs here: one is staying out of the hospital, and the other staying on the phone to the insurance company. On paper I am making a small fortune at my work, but the family doesn't see a dime in cash.

And the biggest nut, the Dana-Farber inpatient bill, I simply don't worry about. The day before the harvest, a nice woman from Farber called and asked for all our insurance information that I had long ago given another financial officer. Somehow or other my case had "snuck up" on her and she had to get me OK'd by the insurance company in very short order. Trying to help, I gave her the name of the insurance doctor who I was told was supposed to approve the procedure. Him she didn't need, she had her own contacts. "does this mean I might not be transplanted?"

"Oh, no no no. Don't worry. It just means I have to do some fancy footwork."

She must have danced up a storm because the in-patient bill, nearly six figures of it, has been paid. All but 75 dollars for Hickman dressing kits I took hom. "Should I have to pay for them?"

"Claims for medical equipment used at home should be submitted as outpatient claims, sir."

"Aye, Aye. I'll have my assistant get right on it." Rule one: never pay a bill just because someone asks you to. Appeal.

But claims for other services have not been so simple. Take the ambulance. Remember the six trips across the street to Brigham and Women's for TBI? That bill didn't go to the insurance company but came to me. I was floored. The total was almost three grand. With no credible explanation, the insurance company decided they should pay only about half. They thought that it was OK to ride an ambulance to the hospital six times in three days, but a patient ought to be able to snag his own ride home. I called the ambulance company for the appropriate codes and the insurance company to make sure they understood why I had to ride so often. The insurance company came up with another big check covering most of the total. The explanation of benefits was so convoluted it took me a day to figure it out, but I had no intention of paying the ambulance company more than my insurance company thought was proper. (See how I shift allegiances when it suits me. Rule two: go with the better deal. Remember Goneril and Regan?)

The insurance company balked at paying a $25 per ride mileage charge. Mileage? The distance traveled for all 12 trips could not have been more than one and a half miles, total. I couldn't fault the insurance company on this one and made my case against outrageous overcharging to the ambulance company. They stopped charging me late fees, stopped dunning me, stopped sending me bills altogether. I got no reply, I just never heard from them again. What burns me up is why I, with an insurance company and a hospital finance department, have in the end to take lonely guerilla action against America's rising health costs. It's a nasty job but someone has to do it, and considering where I would be without these services, I'm happy to shoulder the burden.

Not happy, exactly, but I do get a charge out of the struggle. I work hard to get good medical care. I try to be understanding and personal with my caregivers. But with the insurance company it's no holds barred, full battle stations, attack with any means necessary. Shoot first, ask questions later. Whatever it takes. I am not for a minute above hauling out my long sob story in desperate anger. "Look lady (Why are all the customer service reps women?), I just had a bone marrow transplant, OK? That's what this sea of claims is for. Now if you think you can go through this procedure without psychotherapy, be my guest. But if you think I have the energy for this petty "usual and customary" business... this is ridiculous. I am a sick man."

"You sound fairly energetic to me, sir."

"Yeah, and along with everything else this insurance company is doing to me, I heartily resent spending my one good hour a day on the phone to you. Not you. I'm sure at home you are a lovely person, and I hope you have someone waiting for you there who will listen sympathetically when you complain about this raving bone marrow guy you had to deal with today. But in the meantime, get the company to cover these charges in full."

Of course we reached what they call the stop loss, the point at which you've paid so much that the company starts paying in full. Sort of. They still hit us with "usual and customary," and they still make "mistakes" with the deductible, with my name, Jean's name, her social security number, the address, what they cover, and what they don't cover.

Like the home care. The nurse had to draw blood from the Hickman every third day to track whether the antibiotic was doing its job. The Hickman has two ports, so each time she drew blood there were two identical tests. The insurance company is treating these as duplicate charges for the same test. The lab is trying to help convince them, but in the meantime, they have dunned me.

Who needs this? Sick people? The well are busy working when the ladies of the phone bank come on duty. I sound as if I feel entitled to care. I do, don't y ou? But I'm doing my job here. I took my medicine, and now I'm following the trail of bills wherever it leads, conscientiously, immediately, and as energetically as I can. So they should stop giving me a hard time.

They also give me, I have to admit, a guilt free opportunity to vent. I grab it with both fists and a shrill whine. But don't tell them. I'm sure they'll figure out some way to bill me for it.

The two chapters reprinted above are taken from To the Marrow, by Robert Seder, published by CavanKerry Press. The book is available from local book stores or can be ordered directly from University Press of New England, 603-448-1533, ext. 255.