This isn’t your life. (2019)

It is Day 20. A Monday. I am on the phone with Suzanne, talking about going home next week. We are still counting down to Day 28, as if that date has been promised to us.

“Day 28 is next Tuesday?” she asks. “Isn’t it?”

“I don’t know if I will get out exactly that day. It might be that Wednesday or Thursday.”

“I work on Wednesdays. Remember? I won’t be able to pick you up until after six. And if you get out on Thursday, I have group until seven. I don’t have a co-leader that night so it is hard to cancel.”

“We’ll figure it out,” I say.

“You really want to wait until eight or nine to go home?”

“Maybe someone else can drive me.”

“Like who?”

We talk about the people who might be available. I picture our driveway, the back door, and our kitchen. “It will be nice to be home.”

“Your dog will be so glad to see you,” Suzanne says.

“But not you?”

“No. Not me. I see you often enough at the hospital.”

My mother’s birthday is the Friday following Day 28. My sisters and I usually spend this weekend at the farm with her and our families. We play or work in the snow all day and cook dinner after dark in her crowded kitchen—boots piled at the door, dogs underfoot. Then we squeeze into her tiny dining room, which is filled with the baronial furniture from the Chicago townhouse where she had those terrific arguments, up and down the central staircase, about marrying my father immediately. Even out of the hospital, I can’t go there this year. Too many animals. Too much mold. So my mother is coming to Boston for her birthday weekend, and we will have her party in Mandy’s larger and more comfortable dining room.

“I can’t promise I’ll be at Mandy’s,” I tell my mother. “I may still be in the hospital.”

“I know,” she says. “I understand.” Then she talks about dinner as if I will be there.

“You really think you’ll be there?” Emily asks, sitting with me at the table by the window.

“I’m hoping to be out by Thursday or Friday.”

Mandy calls wanting to know what kind of food I can eat. “And won’t you have to wear a mask? The girls are both sick right now. I don’t want you catching their cold.”

“Yes,” I say. “I will definitely have to wear a mask.”

“How will you eat with a mask on?”

“I don’t know. I hadn’t thought about that.”

“Neither had I.”

Mandy lives north of the hospital. We live south of the hospital. “If I don’t get out until Saturday,” I tell Suzanne, “maybe you can pick me up on the way to Mandy’s.”

But Caleb has a concert next Saturday. He isn’t done until 4:00. And Suzanne has a haircut scheduled. She starts trying to coordinate all this. Will I be released in the morning? Or the afternoon? Do I have any idea? I don’t. Whenever I ask my nurses questions like this, they shrug or roll their eyes or look uncomfortable.

On Tuesday Day 21, a week before we expect all this to happen, I have another bone marrow biopsy. I lie on my stomach, still in my room, and they drill into a bone on my back called the posterior iliac crest. The goal is to extract a sample and examine it in a lab. If they find no leukemia, I can go home for a few weeks, before coming back to continue treatment. If they find leukemia, I have to stay. I can’t go home.

The intern, whose name is Richa, asks if I want a sedative for the procedure.

“No,” I say, lifting my face from the pillow. “I don’t need a sedative for the biopsy, but I will need to be sedated while we wait for the results.”

Richa laughs.

Dr. Dolan does the biopsy. As they clean up afterward, he tells me that we will know what we need to know within forty-eight hours. “We can tell whether the leukemia is gone just by looking at a slide under a microscope. It’s pretty simple, and it should only take two days.”

Every morning at about 7:30 Richa stops by my room alone. She examines me and answers any questions. On Thursday, two days later, this is the answer she has: “The results aren’t back.” On Friday, when I ask her about the results, she tells me the slides are inconclusive.

“What does that mean?” I ask.

“I’m not the best person to explain that. Let’s bring it up during rounds.”

At rounds later that morning, I hear almost the same answer. “The lab looked at the slides once,” the attending says. “Now they need to re-examine them.”

I struggle to formulate a follow-up question, but I get tangled in the ambiguity. Are the results pending? Or are the results confusing? Three or four doctors stare at me, hands clasped below their waists, waiting. “Never mind,” I say. “When will we have a definite answer?”

“Tomorrow or Monday.”

At 7:30 Saturday morning I ask Richa, “Can I expect to hear on Monday?”

“I hope you’ll hear today on rounds.”

But I am not included in rounds that day. The only doctor I see is Richa again when she stops by late Saturday afternoon. She pulls a chair out of a corner to sit near me, which she often does. Tomorrow is her only day off. I ask about her plans. She and her husband are hiking in the Berkshires, near my mother’s. We talk about exactly where, and the weather. She is only five or six years older than Isabelle. I am not much younger than her father. We have had some good conversations and some good laughs together, but I am too frustrated now.

“Richa, I know you guys aren’t telling me something.”

“That isn’t true, Doug.” She stands up suddenly and puts her chair back in the corner.

“Then why aren’t I hearing the results?”

“Because they aren’t ready.”

“I thought they were inconclusive.”

“Whatever we know, we have already told you.” She leaves almost immediately afterward.

“I have been a manager long enough,” I say to Suzanne, “to know when people aren’t telling me something.”

Saturday night is very cold. The furnace for the first floor apartment in our house stops working. A plumber comes. It is an old furnace—almost twenty five years old. I worry about the burner and whether it needs to be replaced and how much that will cost. I keep texting Suzanne to find out what is happening. Could he relight the pilot? No, something is wrong with the burner. Can he fix whatever’s wrong? He’s working on it. He’s fixed it. It needed a part he had on his truck.  And then I want to know how much it cost. I lie in bed thinking about money as I keep asking my nurses why I can’t speak to a doctor. “Is there no one here who can tell me about my biopsy results?”

“Sundays are pretty quiet, Doug. I’m sure you know that by now. We aren’t going to have an answer for you before tomorrow.”

“I know it is bad news.” Suzanne and I are on the phone again. It is late Sunday night. “I am sure it is bad news.” I am sitting propped up in bed. “And they don’t have the courtesy—the respect—just to come out and tell me.”

I hear Rosalind in the background. She is talking about an assignment due tomorrow. Then I hear her bedroom door close. “What happens,” Suzanne asks softly, “if the leukemia is still there?

“I don’t know.” We fall silent for a few minutes. Rosalind’s door opens again and she has another question. “It means my leukemia,” I finally say, “is harder to treat.”

“They did tell us—right?—that your mutations were aggressive. And I remember a doctor telling us that sometimes they just have to do chemo all over again.”

“And what if that doesn’t work?” I almost shout. “What if it doesn’t work the second time? What does that mean about my chances?”

My rage continues rising until 7:30 Monday morning when Richa opens my door. She doesn’t sit down. “I’m sure you are impatient to see the results.”

“Dr. Dolan said two days. It’s been five days. Why would you guys have such bad data on how long it takes to get the results?”

“I can see you are frustrated.”

A long silence follows. Finally I say, “Yes. I am.”

“Dr. Duggan is the new attending this week. Have you met her?”

“No.” I am looking away from her, into a corner where the wall meets the floor.

“She will come by on rounds today and speak with you about the results.”

“So you actually have results?” My voice sounds shaky and hollow.

“As I understand it, yes.” And she leaves without examining me.

If it were good news, Richa would have just told me. The leukemia must still be there. And I believe, as my father did, that my anger is in fact anger about not being informed—and not anger about illness and death, seeking an object. I have been sweating more at night. When will I start feeling worse? When will my fevers come back?

Before my door opens and rounds begin, the doctors hold a long conference about me in the hall. Half of this is certainly about my medical condition but the other half must have been about the intensity of my frustration because when Dr. Duggan opens the door she has decided that I am a problem only her authority can solve. She picks up Richa’s chair and sets it down facing me, while the other doctors array themselves behind her. 

“Do you have the results?” I ask.

“We aren’t going to start there,” she declares. “We are going to start with our goal. Which is to get you into remission. Now, to get you into remission, you need one or two thwacks with a big hammer. With chemo. Probably fifteen to twenty percent of patients need two thwacks. So it’s not a rare event, but if you can do it with one thwack that is better than—”

I interrupt her. “But do I need two?”

She snorts and jerks both hands off the arms of the chair. “I am going to tell you—” She says this loudly, as if a train or an ambulance were passing outside the window. “—the whole story from beginning to end.” Now she pauses and watches me for a moment. “I don’t know if you need two.” She speaks less loudly now. “But I am going to tell you how we’re going to figure that out. Okay?”

“Well—go ahead. You do your thing and then I will—”

Now she has to interrupt me. “Yes. It would be good for me to do my thing so I understand that you know what I know. When we do a bone marrow biopsy at this point in your treatment, it is to assess what chemo accomplished. For some patients when we do these biopsies, their marrows are filled—not one or two cells—but filled with persistent leukemia. And those patients, if they are physically able to tolerate it, we give them a second thwack of chemo immediately. Boom. Right then and there. But for the majority of patients, a Day 21 biopsy doesn’t really provide a clear picture. We see some leukemia cells. But we can’t tell whether these cells are in the process of dying or whether they are active and will continue to propagate. So what the Day 21 biopsy shows doesn’t matter.”

“Yes. But what were the results?”

“They don’t really mean anything. I mean, they don’t.”

“That doesn’t make any sense to me. And that is not how anybody else has described it to me. The bottom line is—”

“Richa—” She finds Richa standing behind her. “Can you bring me my iPad?”

“The bottom line is that you guys did a biopsy on Day 21 and I am supposed to hear the results. And I haven’t heard the results. And the challenge for me—the emotional challenge is—”

“Oh, I get it.”

“But you don’t. You can’t. This isn’t your life.” I am silent, watching her. She doesn’t start speaking. “And I have been waiting on an answer for a week. And here you are saying to me, ‘The answer doesn’t matter.’—”

“So that’s not—” She grunts in restrained impatience. “All right.”

“I am still not hearing any explanation that starts with what the results are.”

She has her iPad now. She is finding something. “So. Let me read you the exact wording here—I’m looking at the report.”

“You’ve had the report this whole time?” I ask, my voice rising in indignation.

“We just got it. Right before we came in your door.”

“Why didn’t you lead with that?”

“Here it is. This is it. Here is some information about how they found immature cells—which we call blasts—and how these immature cells look like leukemia but we don’t know for sure whether they are leukemia. And then here is the note. ‘Distinguishing between blasts representing regenerative marrow activity from residual acute myeloid leukemia may be difficult in some cases such as this case, and a follow-up biopsy may provide a less ambiguous answer.’” She shakes the iPad at me. “Now that is a signed out pathology report. And it says we don’t know.”

“But that is so much better than nothing.”

She looks astonished. “You are satisfied with that?”

“You are telling me that you looked at the results and decided that things might be okay, that things might not be okay, and that we need to do more testing. If that is what there is to know, I am glad to know it.”

“When I say the results don’t matter, that doesn’t mean they don’t matter. I mean that these results aren’t clear enough to direct treatment. I projected that this kind of answer wouldn’t be satisfactory to you.”

“From my point of view—that’s information. And that’s better than just ‘we are still waiting to hear,’ which is essentially all anyone has told me for the last week.”

But she still seems puzzled.

When I call my cousin Joe, his reaction is the same as his father’s would have been, or mine. “I’m angry, Doug,” he tells me. “Holding back information like that, despite its ambiguity, was wrong.”

“And I still feel there is something they aren’t telling me.”

“Like what?” he asks.

“I’m not sure. But maybe they were telling me and I wasn’t hearing them.”

Then we talk about my father’s experience, the lack of full disclosure, and I try to understand how that is shaping my emotions. “Maybe you want to tell them that story,” Joe suggests. “Think about it.”

I also call Nick and talk to him about what happened. “It isn’t clear to me,” he says, “that your medical team really understood what you were asking.”

“For full disclosure?”

“Yes. Did you tell them that story?” He is thinking about my father’s experience, and his. “If you were my patient and I heard that story, I would make very different decisions about what kind of information to share with you.”

So I do. When Richa braves my door, at 7:30 in the morning on Tuesday Day 28, I try the story out on her. She brings Dr. Duggan back to speak with me alone, before rounds. They both pull up chairs. And I tell the story again.

“I am glad you told me this,” Dr. Duggan says. “Your reaction yesterday was like, wow, pretty unusual.”

I struggle to understand what was unusual about wanting to know whether I still had cancer. But I struggle silently.

She puts her hands on both knees and stands up. “Richa and I will do another bone marrow biopsy later today. The results this time should be more conclusive.”

“I won’t be going home this week, will I?”

“No,” she says, as they put their chairs back where they found them. She turns to face me. “Any more questions?”

“I think there is something more that you aren’t telling me,” I say. “I think you suspect that I will need a second round of chemo.”

She looks directly at me. “Yes, I do. I don’t know for sure, but yes I do suspect that.”

And there it was. The last piece of missing information.

Dr. Duggan performs that additional biopsy, the Day 28 biopsy, with Richa’s help. Within forty-eight hours, I hear the initial results. They have found leukemia, less than before but still quite a lot. I need another induction, which means another round of chemo. A second thwack with a big hammer. Then the same plunge in my blood counts and a second month in the hospital.

There is dead silence on the phone when I tell Suzanne.