Will I ever be here again? (2019)

So I have this sense of dread. I am hiding. Normalcy is comfortable and comforting, like pulling the covers over your head. Yes, I know it is cold outside. But it is still warm where I am. Then I arrive for my next appointment at the Hematology/Oncology Outpatient Clinic on the seventh floor of the Shapiro Building at the Beth Israel Deaconess Medical Center.

I drive there thinking about life. Maybe my mother and my sisters and my brothers-in-law and any children not away at college coming for dinner on Saturday. And what I might cook. Maybe parent-teacher conferences scheduled for tomorrow. Which teachers I will talk to and how weird it will feel walking the halls wearing a mask and gloves. Maybe more snow predicted for next week. Whether the kids will have time to help shovel before they leave for school so I can make my appointment on time.

Life stops at the door of the clinic. I stand in line to register at the desk. The desk is a long counter with boxes of gloves, boxes of masks, and boxes of tissues stacked like cairns every four feet. Next to each stack stands a bottle of hand sanitizer. Sometimes two ladies wait behind the counter, and sometimes five, depending on how busy it is. Then a technician calls me into a room to check my vitals. She checks my weight. She also checks my height—every time I visit.

“Why do you check my height every time?” I once asked.

“I don’t really know,” the technician said. “In case it changes?”

You have to take your shoes off for your weight and height, and most people walk back to their seat in the waiting room carrying their shoes.

When I come back carrying my shoes, I am a member of a club that I never wanted to join. Alone in a hospital room, I only saw nurses and doctors, family and friends. I didn’t see the other patients and so found it easier to focus on my health rather than my illness. Here everyone I see is sick, and there is no hiding from the fact that I am sick as well. Some people are sick but clearly engaged and functioning—no hair, wearing a mask and gloves, but carrying an iPad or a laptop or a newspaper. Others come pushed into the clinic by sons or daughters and then doze in their wheelchairs. I often see a large woman wearing a bright red wig under a baseball cap who talks loudly about how her transplant failed and she will need to go through it for a second time. As I raise my head from tying my shoes, each person seems like some version of my present and future, as if my illness has been organized on a timeline.

One day, while waiting for my name to be called, an older woman comes up to the counter wearing a mask and pushing a wheelchair. She wears a black hat pulled down over her hairless head. She uses the wheelchair like a luggage cart. It holds her coat, which is also black. It holds an overnight bag, which is dark grey. She wears a black shirt, black pants, and black boots. I watch her park the wheelchair (which is also black) and then walk to the room where they take height, weight, and vitals. When she comes back, she carries her shoes. Her socks are hot pink and striped white like the socks a character might wear in a Dr. Seuss book.

“Mr. Smith? Douglas Smith?”

Each visit it seems like forever before they call my name.

Now I talk to a nurse or a doctor. “How are you feeling?” is always their first question. “Any pain? Any distress of any kind?”

I share my principal source of distress. “Well, the transplant process is currently scaring the shit out of me.”

They nod. Every one of them. Every time. “Yes.” They never tell me I shouldn’t worry. “It is a risky process.”

“It’s terrifying,” I say.

“Yes, it is pretty scary.”

Then I drive home thinking not about normalcy, not about my pleasure in everyday life, but about my illness. Although it is fun, that one day, to wonder about those hot pink and striped white socks. I keep picturing that woman, all dressed in black but still barefoot, selecting those socks from her dresser drawer. What did they mean to her? To me, they seem like her resistance, her defiant statement of joy.

I have had another biopsy by now and heard the results. I am in remission. But there is a hundred percent chance that the leukemia will return if I don’t get a stem cell transplant. As leukemia mutates and multiplies, it conceals itself from my immune system. It wears, as my lead doctor says, a cloak of invisibility. So when it starts to return, there is nothing to stop it. If I do get a stem cell transplant, the new immune system will recognize the leukemia and fight it. Unfortunately, the transplanted immune system can also recognize my organs as foreign and attack them. This is called Graft versus Host Disease, and doctors don’t understand it very well.

I see my lead doctor, Dr. Dreier, once or twice a week now, which is more often than I saw her in the hospital. “Some patients sail through the transplant process,” she says. “Others really struggle.” She doesn’t know which one I will be.

This isn’t what I want to hear. I want information that feels like a weather report before a hurricane or a blizzard. Couldn’t somebody at least act like they know what will happen? But there is only silence. Upturned palms spread wide. Shrugs and apologies and empathetic sighs. “We just don’t know.”

A nurse named Diane manages scheduling and planning for stem-cell transplants. I tell her, like I tell everyone else, how scared I am.

“It’s the unknowns,” she says, “that make the transplant so scary. Because everything is different for each individual, we can’t say how it is going to work out for you. So you have so much less knowledge going into it. And so much less control. And knowledge and control seem very important to you.”

“Yes.” I didn’t realize she understood me so well. “Those things do matter a lot to me.” 

She sighs empathetically. And shrugs. “I’m sorry. There isn’t much I can say honestly.”

“Okay. I appreciate that.”

“The most I can say is, This is what we do. We do these transplants all the time. And we are very good at them. I know that is not a guarantee. But it should be some comfort.”

And it is. For short stretches of time. Like the thirty minutes it takes to drive home. Diane gives me a book to read, Graft Versus Host Disease: Living with the Aftereffects of a Bone Marrow/Stem Cell Transplant. The cover has a picture of a wooden dock and a sunlit lake and a boat under sail that doesn’t seem to have anyone on it. I read it immediately, with a pen and sticky notes, as if I were back in school.

You think you want information, until you actually have it. I stare at this sentence and then mark it in several different ways, using my pen:

“Chronic Graft versus Host Disease (GVHD) can affect your skin, eyes, mouth, lungs, muscles, joints, liver, stomach, intestinal tract, and genitals.”

One patient might have more of these symptoms. Another patient might have fewer—or none. I imagine myself facing all of these challenges at once. Then I mark this sentence:

“Late effects of GVHD can include high blood pressure; diabetes; greater risk of heart problems; elevated lipids (a type of fat in your body); bone loss (osteoporosis); thyroid problems; lung problems; secondary cancers.”

The standard treatment for GVHD is steroids, to suppress the immune system. Once you start on steroids, you can remain on them for years, and steroids have side effects of their own:

“Long term steroid use can cause weigh gain, bone loss, weak muscles, high blood sugar (diabetes), mood swings, cataracts, increased risk of infection, high blood pressure, thinning of the skin.”

Each sentence reads like a sounding gong.

Throughout the book, I see quotations from patients struggling with GVHD. Each quotation is displayed in a special font. Each quotation addresses something I can’t imagine my life without:

“I can’t eat meat because I have a very dry mouth and I have no saliva to get meat down.”

“My GVHD is in my ankles and causes me to have skin ulcers and difficulty walking.”

“I love to read history books but it got to where I couldn’t read at all. I couldn’t even watch TV because of my ocular GVHD.”

Among these quotations lurk thoughtful, empathetic, and obviously wise advice that forces my eyes up from the page in a rage:

“It may help to think about post-transplant recovery not as resuming your old life, but instead creating a new life direction. This new life will deal with the discomforts and limits of GVHD—sometimes for many years.”

Be patient, they urge. Accept, they urge. But all that seems just like surrender:

“Be patient, and don’t give up. Be willing to accept that life may be different from what it was before. Enjoy every accomplishment, any progress, and every good day.”

This vision of measuring myself in increments of how tight my skin is or how dry my eyes feel when they move in my sockets, whether my joints and muscles allow me to walk or whether I produce enough saliva to enjoy my food—this vision of training myself not to compare how I lived mere months ago to how I will live in the future—obsesses me increasingly as I drive back and forth to the clinic.

“You read it?” Dr. Dreier asks the next time I see her. “You actually read it?” She works with a nurse practitioner named Bonnie, who is also in the room. They both laugh. “I mean,” she continues, “we’re glad you read it. We only sound surprised because almost none of our patients read it. I’m not kidding. I think you might be the first one of mine who did. And no one puts sticky notes on the pages where they want to ask questions.”

“Right now,” I say, “I’m wishing I hadn’t read it.”

“Yes. I can kind of look at your face and see that.”

I am sitting hunched over at the end of an examination table. My hands are in fists. My fists are trapped between my knees. “What are my other options?” I ask. “Beside a transplant.”

Dr. Dreier stops smiling. “What do you mean?”

Bonnie crosses her arms impatiently. She leans back against a counter and looks away, jutting her jaw as if biting her tongue.

“A transplant is the standard of care now,” I say. “Right?”

“Yes,” Dr. Dreier says.

“But a transplant is a high risk process. First, I have to withstand a whole lot of chemo. Then there’s all the risk of infection after the chemo. And after the transplant there’s GVHD and the complexities of my body trying to manage someone else’s immune system.” I am speaking to the floor just past my knees. “The whole process might eradicate the leukemia but leave me with a range of other very serious health problems.”

“Yes,” she says.

I raise my eyes. “So what else can I do?”

“Other than a transplant?” Her face sags. She blinks rapidly and looks for a moment like she might start to cry. “There are no other options. Not for you.”

“What if I said no?” I demand. I sound angry, and not at all grateful for modern medicine. “What if I refused the treatment? What would you do instead?”

Bonnie lurches off the counter as if about to intervene, but Dr. Dreier is already speaking. “I am not sure,” she says softly, “you want to hear the answer to that question.”

“I do.”

“There aren’t other options. More chemo. But the leukemia will find a way around the chemo. And then palliative care. We would do what we could to keep you comfortable—”

I finished her sentence. “—while I died.”

She doesn’t respond.

And I am silent. I think Bonnie is tapping her foot but when I look both her feet are still. “If that is true,” I finally say, “I want to understand why a transplant is my only option.”

“We talked about this before.”

“I know. I’m sorry. I just have to hear it again.”

“It’s like I said. With your mutations, leukemia will come back if you don’t have a transplant. Chemo alone will never be enough to keep you in remission.”

“We know what we’re doing,” Bonnie blurts out, as if I am doubting their professional skill. “All of these risks—we know how to look for them, how to catch them early, and how to treat them.”

“And your sister is a perfect match!” Dr. Dreier says sweetly. “This is the silver lining for you. The closer the match, the less likelihood of GVHD.” She pauses and glances at Bonnie. “Have we connected you with a patient who has gone through a transplant before?”

“Yes,” I say. “I have talked to a few people. It hasn’t made me feel any better.”

I have spoken to one transplant patient who is a veteran and a nurse anesthetist from Minnesota. He had been very active—running, walking, riding a bike—until he developed Acute Myeloid Leukemia. His donor was his brother, a perfect sibling match, and he did well the first hundred days after the transplant. For a few months he even returned to some of his old activities. He walked. He split wood. He and his wife put in a new flower garden behind their house. Then he developed GVHD, which his medical team tried to control with steroids.

Three years after his transplant, the GVHD has only intensified and so have the side effects from the steroids. He suffers lower abdominal cramping, gastrointestinal bleeding, frequent diarrhea, and problems with his bladder function. His hip joins are deteriorating and his tendons are detaching from the bone. His hand shake so badly that he can’t sign his name and has to wear a bib during meals. In November, despite his tremors, discomfort, and pain, he could still stand in the cold and advise his daughter and her husband on how to replace a door. But then he suddenly took a turn for the worse. Now he needs help standing up, and he has to use a walker. His speech is slurred and he can’t remember words, which might be caused by a tumor or a stroke or an infection in his brain. And a new problem seem to emerge every week.

Snow falls overnight the second week I am home, and at eight in the morning I have an outpatient appointment. I decide not to wake up the kids. I will shovel myself out of the driveway, because I always could do that in the past. And I can still do it, though just barely and only because we didn’t get that much snow. The driveway is clear. The last of the snow falls slowly, twisting and swirling, and dusts what I have just shoveled. I hear other shovels in the neighborhood. A snow blower stutters and stalls. A plow passes on the street behind us.

Tired but perfectly calm, I stick my shovel in a snowbank so the kids can do the sidewalks and the porches later. I start the car. I look for the ice scraper. I can’t find it. It isn’t behind the driver’s seat, where I usually leave it in the winter. And I am suddenly furious, even though I know it must be in the trunk. Which is three steps from the door I am holding open, red faced and swearing. Three steps around the car. Close the door and walk three steps. That’s all. But that feels like an insult and an enormous effort, and I am angry with my entire family, still asleep inside the house, because they left me to shovel the driveway by myself.

That isn’t why I am angry, though. I am not angry because I did all this. I am angry because I might never do it again. Car running, defroster still blasting cold air on the windshield, I sweep off the roof with my arms, jamming snow up the cuffs of my jacket and down the ends of my gloves. Then walking around the car to get the scraper and scraping the ice off each window, a question keeps coming to my mind. Will I ever be here again?