Jumping (2019)
It is Monday March 12, 2018. I have been home for a few days more than a week. I expect to return to the hospital next Friday, March 23 and start the transplant. First, they will destroy my immune system. For four days, they will pump into my bloodstream a cocktail of powerful chemotherapy agents. Next, they will replace my immune system with my sister Mandy’s. A medication will cause her to overproduce stem cells, which will spill into her blood stream. They will harvest her stem cells and give them to me, just as they would a bag of blood, and then her stem cells will migrate into my bone marrow and start rebuilding my immune system. Finally, they will monitor me while I recover. Bacterial and viral infections are an obvious concern. There are also funguses in dust, soil, and plants that I have resisted without any effort the rest of my life but could cause serious infection after the transplant. I will be in the hospital for at least a month. I will be in isolation the entire time—solitary confinement with no option to walk the halls.
But that date for it all to start—next Friday—isn’t final. My doctors are still evaluating the risks. Right now they are worried not about infections I could catch in the future but infections I might already have. Hidden in my body, these infections might “blossom” (their word) when chemotherapy wipes out my immune system. An infectious disease specialist named Dr. Alvarez examines me. She asks a range of extremely detailed questions about where I have lived, where I have traveled, and what I do for hobbies. And then she orders blood tests.
“Damn,” says the phlebotomist the next time I have my blood drawn. She is holding a thick stack of lab orders and flipping to the last page to find the name of the doctor. “Dr. Alvarez,” she sighs, as if she has known it all along. “That woman always orders so many tests.” Then she looks at me. “You better drink some water because you are about to give up a lot of blood.” She draws thirteen vials of blood to check for various bacterial, viral, and fungal infections, as well as biomarkers for a range of other problems.
Organ failure is another risk. The team also evaluates the health of my major organs, particularly my heart and lungs, to make sure they can withstand another round of chemotherapy. I have a pulmonary function test, where I sit in a little glass box, on a spinning white stool, and blow into a tube. I pass that test, but a chest x-ray shows some inflammation in my lungs, and a CT scan confirms it. A number of doctors speculate about the source of that inflammation. “This could be a concern,” the infectious disease specialist writes, “specifically with regards to invasive fungal infection.” Do I need a bronchoalveolar lavage? A lung biopsy? Any test has several other tests waiting behind it. And every test raises the possibility of other pathologies in what I recently considered my healthy body.
On Wednesday, March 14, I have an echocardiogram, which is basically an ultrasound of my heart—same wand, same screen they use to look at a fetus in the womb. Then I drive home. I am taking off my coat in our living room when my phone rings. Suzanne is lying on the couch.
It is Bonnie, the nurse practitioner who works with Dr. Dreier. “I have some bad news,” she says. “The echocardiogram found a mass on your heart.”
I walk into the kitchen, away from Suzanne, and sit at the counter. “What?”
“The echocardiogram you just had done. This morning? Remember?”
“Yes. I remember.” It ended an hour ago.
“When the radiologist looked at the pictures, he identified a mass on your heart.” She speaks abruptly and never shares everything I need to know.
I always have to ask. “What does that mean?”
“The mass could be an infection. It could be a benign or malignant tumor. There are like a million things it could be. We are scheduling you for a—” And then she says the name of another test that I can’t spell or pronounce on my own, and I let her hang up without insisting that she explain it.
I walk back into the living room. Suzanne is lying face down on the couch. Her back hurts.
“That was Bonnie.”
“You don’t like her.” She is staring ahead at the arm of the couch, as if swimming toward the end of a pool. “I can tell.”
“She called to say that the echocardiogram—”
“—The test you just did?” Her head moves up and down when she talks because her chin rests on the cushions.
“Yes. It showed a shadow on my heart. Which could be an infection or a tumor.”
“What?” Suzanne asks, just as I did.
There is a footstool next to our couch. I sit on the footstool. “I might have—” My voice chokes. “—a tumor on my heart.” I start crying. “That I guess they never found? In all the tests they did before?”
Suzanne shouts into the cushions. “You’ve got to be kidding me!”
“Or it could be an infection. Or it could be—” My voice is now angry and grim. “—‘like a million other things,’ as Bonnie said.”
Suzanne’s forehead is resting on the cushion and she isn’t moving. I lay my hand between her shoulder blades. We are both silent for a long time.
“Your transplant,” Bonnie tells me the next day, “will buy you two to five years.”
We face each other in an examination room. I have to sign a consent form for the transplant, as for any surgical procedure. I expected to review it with Dr. Dreier, but I am reviewing it first with her. The marked copy I have only just now pulled out of my bag.
Bonnie waits for me to react to what she just said. Did she just tell me that I will be dead in five years? She did. Whatever she has to say, she almost never fails to make me upset. And the way she said this was so obviously uninformed and imprecise.
I am sitting beside a desk. I put the consent form face down on the desk. “Am I going to see Dr. Dreier today?”
“Why?” Bonnie bristles at any suggestion that a doctor might know more than she does.
And I realize this. “I have some questions for her.”
“Try me.”
“No,” I say. “I’ll wait and discuss this form with her.”
She stares at me for a moment and then stares angrily out the window. I remain silent until she leaves.
“Of the people with your mutations who undergo a transplant,” Dr. Dreier tells me, “about fifty percent are still alive five years later.”
My chances for survival I have been trying to understand since January. I have asked time and again and always heard that there was no answer. Outcomes vary so widely between individuals. Five year survival rates don’t reflect the advances in treatment. Numbers aren’t typically broken out by age and other health issues. But now the person who told me that there was no answer actually has an answer. The answer is a more precise, more empathetic, and better informed version of what Bonnie tossed at me earlier. Five years isn’t the longest I will live, but my chances of living longer than that are like flipping heads or tails.
“You look surprised,” Dr. Dreier says. “I’ve told you this before.”
But she hasn’t. I would remember.
The AML patient I know in Minnesota has survived three years since his transplant. In the last few weeks, they increased his immune suppressants to address the complications of Graft versus Host Disease (GVHD). This weakened his immune system, and a viral infection sent him back into the hospital. Every time they tried to address the viral infection, the GVHD got worse. Every time they tried to address the GVHD, the viral infection got worse. In his pain and confusion, he started whispering, as doctors leaned over him, “I just want to be done.” They asked him if this meant he wanted to stop treatment. Did this mean he wanted to die? Sometimes he would say no. Other times it would seem like he couldn’t bring himself to say yes. Already bleeding from his gastrointestinal tract, he started coughing up clotted blood. The GVHD was now also attacking his lungs. Then it became clear that he did just want to be done, and he moved to hospice, where he died the day after my conversation with Bonnie and Dr. Dreier.
Suzanne and I don’t talk about my heart. We try not to think about it. The shadow could be a tumor or an infection, but what Bonnie didn’t tell me, which I only learned later, was that it could also be a mistake. Echocardiograms read your heart through your rib cage and your lungs. Results vary widely, depending on the operator, and a shadow is often misinterpreted as a mass. On Friday, March 16, with a week left to go, I have another test. This time, they run a camera down my esophagus so they can see my heart from inside my rib cage. There is no mass.
But they are still worried about my lungs. At the end of the day Monday, with four days left, I have another CT scan of my lungs. If I do have a lung infection, they will postpone the transplant for two or three weeks. As my donor, Mandy has gone through a battery of tests herself. The tests have a thirty-day shelf life. If the process doesn’t start on Friday, we will pass the expiration date and she will have to do the tests all over again. On Tuesday they find me an appointment with a lung specialist. But first I have to spend the morning at the dentist. I need a full workup in case I am carrying any infections in my teeth. The dentist appointment runs longer than expected. I come rushing into the lung specialist’s office almost an hour late, but he sees me right away. He finds nothing that should prevent us from starting the transplant. But the final decision rests with Dr. Dreier. The next morning, Wednesday morning, she makes the decision. I will return to the hospital on Friday, and start chemo for the transplant as scheduled.
“It’s like the end of a Western,” I say to my cousin Joe on Thursday. We are talking on the phone. “I am standing at the edge of a cliff, a river below, and I can see the posse riding toward me. Like the cloud of dust in the distance? And it’s jump or die. I can stand here and die, or I can jump into the river.”
“But your jump is going to happen,” Joe points out, “inside a world-class hospital.”
I have to admit that is true. It doesn’t break my black, grim mood.
After missing them so much for so long, and knowing how I will miss them again soon, I have been fighting with my children—or at least the two that are home.
Earlier in the week, I fought with Caleb. Suzanne and I were talking in the living room. He didn’t wait for a pause in the conversation or even call our names. He just started talking from the other room as if all he heard from us was silence. His friends wanted to go rollerblading at an indoor rink.
“Where is it?” Suzanne asked.
“Who’s driving?” I asked.
He is sixteen. Most of his friends are sixteen. If a sixteen year old has had their license for less than six months, state law prohibits them from driving other kids without an adult in the car. Laws like this have greatly reduced teen auto fatalities.
He texted back to find out where the rink was. By the time he got an answer, Suzanne and I had started talking again. Again, he just started talking over us.
“How much money do you need?” Suzanne asked. “I don’t know how much cash we have in the house.”
“And who’s driving?” I asked.
His friend said ten dollars but he didn’t believe him. He probably needed more money than that. Didn’t he need more money than that? We have started talking again.
“You can’t go,” I said, “until you find out who is driving.”
But he didn’t tell me and then he kept interrupting us as he tried to put together the cash until all my anxiety and all my anger erupted. “We are talking!” I snarl between my gritted teeth. “Do you hear us talking? Do you? Answer me!” I made him answer me. “And it never occurs to you to say ‘excuse me’? Or to acknowledge in any way that you are interrupting? We are not sitting here in silence, Caleb, waiting to find out what we can do for you next. You are not leaving the house if we don’t know who’s driving.”
His friend Anna was driving. She is sixteen. She has had her license for a month, and there was snow and ice on the roads. I offered to drive him myself, but by that time he was so angry at me that he no longer wanted to go.
“I understand why you were frustrated,” Suzanne says later, “but that was way too intense.”
The next night, I fought with Rosalind. She has taken photographs of our walks at the farm. I want to print them and frame them and hang them in my office. I also want to take them with me to the hospital. I want them hanging near my bed so I can remember being in the woods with my children when I was healthy. But I also want them in the hospital so I can imagine hanging them in my office one day. I know exactly where they will go. I will finish putting them up and sit down in my chair, maybe with the hammer still in my hand, and remember myself remembering these walks when I was sick.
But Rosalind needed to give me the files. I also needed her help—for maybe twenty minutes—making sure they were the right size and the right resolution and deciding exactly how to have them printed. I told her this two weeks ago, when I first came home, but she kept making excuses, and this was the last possible day when I could get it all done before Friday. I chased her all afternoon, but she wouldn’t do it. Finally after dinner I sat down next to her on the couch and opened my computer. We talked for a few minutes. Then she stood up as if she were coming right back and just went into her room and closed the door.
Her latch clicked. “Goddammit!” I bellowed. Her door is maybe six or seven strides from the couch. I leapt up from the couch, crashed through her door, and started yelling with my hand on the knob. She was sitting on her bed. “Why should it take so much effort to get you to help me?” I was practically spitting in anger. “I am about to go back into the hospital, Rosalind. Do you remember that? Do you? And I am asking for help. I have asked repeatedly, over and over, for days on end, and I still can’t get you to do what I need you to do. Have I ever once stopped helping you? Ever?” I yell. “But you won’t help me. You won’t spend twenty minutes downloading some files and giving me some advice.” Then I thought it. I knew I shouldn’t say it. But I said it anyway. “I am so disappointed in you.”
Rosalind did what I asked that night. But I was still angry at her the next day, and she was still angry at me.
And then it is midday on Friday, and I am standing in a hospital room, next door to the room where I spent so much of January and February, looking out at the same static view—rooftops and blank windows, flagpoles and bare branches. I am still wearing street clothes. I am surrounded by bags and boxes. I haven’t eaten since dinner last night because I am scheduled for a minor surgical procedure. They will install a port in my chest today so they can start the chemotherapy tonight.
The chemo regimen that will destroy my immune system is a cocktail of fludarabine and busulfan that the staff calls “FluBu.” The first bag of busulfan they hang at midnight on Friday. The nurses work in pairs as before. One standing at the computer. One holding my wrist and reading my bracelet and then reading the label on the bag. They hang my second bag of busulfan at 6:00 the next morning and the fludarabine at 900 and the busulfan again every six hours. When I ask whether the experience will be better or worse than the chemotherapy I have already received, I get different answers. The doctors say it will be about the same. The nurses say it will be harder. I tend to believe the nurses.
As the chemo ramps up, I lie in bed and stare at Rosalind’s photographs of our walks, which somehow represent what I stand to lose and what I stand to regain. We might start on the road, passing the barn and the fields. I feel the heat of the summer and the cool of the shade.
Then we walk out of the valley, up the side of one hill or the other. In the first picture, we are walking in the late spring. In the second picture, we are walking in the early fall, along an old ridge road that used to run from Boston to Albany.
The first week after the leaves come out is one of my favorite times in the woods. I love that bright, light, tentative green and the purple surface of the vernal pools.
Every walk is a circle. We come down the side of one hill or the other, back into the valley. I know where Rosalind took this picture of our dog, just by the lay the ground and the shadow of the maple tree above it. And the walk might end on the other side of the barn from the house, along the edge of what was once a field but is now a collection of beaver dams and a marsh.