Tagged leukemia

When the Cancer Doctor Leaves

Doctors

When the Cancer Doctor Leaves

I knew how difficult it would be to tell my colleagues I was leaving for a new job. I didn’t anticipate how hard it would be to tell my patients.

Credit…Aaron Josefczyk/Reuters

  • Jan. 14, 2021, 5:00 a.m. ET

“I’ve known you since 2003,” my patient reminded me, after I had entered the examination room and took my usual seat a few feet away from her. She was sitting next to her husband, just as she had been at her first visit 17 years earlier, and both wore winter jackets to withstand the sleet that Cleveland had decided to dump on us in late October. “That was when I first learned I had leukemia,” she added. He nodded dutifully, remembering the day.

I was freshly out of my fellowship training in hematology-oncology back then, and still nervous every time I wrote a prescription for chemotherapy on my own, without an attending’s co-signature. In her case, it was for the drug imatinib, which had been on the market only a couple of years.

At the time, a study had just reported that 95 percent of patients who had her type of leukemia and who were treated with the drug imatinib achieved a remission. But on average, patients in that study had been followed for just a year and a half, so I couldn’t predict for her how long the drug might work in her case.

Seventeen years later, she was still in a remission. During that time, she had retired from her job as a nurse, undergone a couple of knee replacements, and had a cardiac procedure to treat her atrial fibrillation.

“You had a toddler at home,” she reminded me. That son was now in college. “And then your daughter was born the next year. And you had another boy, right?”

I nodded, and in turn reminded her of the grandchildren she had welcomed into the world during the same time. We had grown older together. Then we sat quietly, staring at each other and enjoying the shared memories.

“I can’t believe you’re leaving me,” she said softly.

When I decided to take a new job in Miami, I knew how difficult it would be to tell the other doctors, nurses, pharmacists and social workers I work with, the team from whom I had learned so much and relied upon so heavily for years.

I didn’t anticipate how hard it would be to tell my patients.

For some with longstanding, chronic cancers, it was like saying goodbye to a beloved friend or a comrade-in-arms, as if we were reflecting on having faced down an unforgiving foe together, and had lived to tell about it.

For others, still receiving therapy for a leukemia that had not yet receded, I felt as if I were betraying them in medias res. I spent a lot of time reviewing their treatment plans and reinforcing how I would transition their care to another doctor, probably more to reassure myself than my patients, that they would be OK.

A few were angry. Unbeknownst to me, my hospital, ever efficient, had sent out a letter informing patients of my departure and offering the option to choose any one of eight other doctors who could assume their care — even before I had a chance to tell some of them in person. How were they expected to choose, and why hadn’t I told them I was leaving, they demanded indignantly.

I felt the same way as my patients, and quickly sent out my own follow-up letter offering to select a specialist for their specific types of cancer, and telling my patients I would miss them.

I then spent weeks apologizing, in person, for the first letter.

And though I always tell my patients the best gift I could ever hope for is their good health, many brought presents or cards.

One man in his 60s had just received another round of chemotherapy for a leukemia that kept coming back. I think we both knew that the next time the leukemia returned, it would be here to stay. When I entered his examination room, he greeted me where my other patient had left off.

“I can’t believe you’re leaving me.”

Before I could even take a seat, he handed me a plain brown bag with some white tissue paper poking out of the top and urged me to remove its contents.

Inside was a drawing of the steel truss arches of Cleveland’s I-90 Innerbelt bridge, with the city skyline rising above it.

“It’s beautiful,” I told him. “I don’t know what to say.”

“You can hang this on your office wall in Miami,” he suggested, starting to cry. “So you’ll always remember Cleveland.” And then, Covid-19 precautions be damned, he walked over and gave me a huge bear hug. After a few seconds we separated.

“No,” I said, tearing up. “I’ll hang up the picture and always remember you.”

Mikkael Sekeres (@mikkaelsekeres), formerly the director of the leukemia program at the Cleveland Clinic, is the chief of the Division of Hematology, Sylvester Comprehensive Cancer Center at the University of Miami Miller School of Medicine and author of When Blood Breaks Down: Life Lessons From Leukemia.”

The Covid Balancing Act for Doctors

Doctors

The Covid Balancing Act

At the start of the pandemic, I was “Dr. No” to my in-laws and cancer patients, but my conversations have become more nuanced.

Credit…Getty Images

  • Jan. 7, 2021, 5:00 a.m. ET

My wife’s parents have led a relatively monastic existence since about mid-March.

Both are in their 80s and live independently in rural Pennsylvania, maintaining a three-acre property by themselves. My father-in-law, the older of the two, has skirted major medical problems despite a decades-long indiscriminate diet, a testimony to the triumph of genetics over lifestyle choices. My mother-in-law, on the other hand, has been ravaged by lupus, which flares regularly and requires medications that suppress her immune system.

So when Covid-19 hit, we feared for their health, given their ages and her compromised immunity, and begged that they place themselves on lockdown, so we wouldn’t lose them to the pandemic.

And they did.

Where they used to buy groceries at their local Giant Eagle supermarket (which they call the “Big Bird,”) they turned instead to Instacart for home delivery, shrugging off the random items their shopper would get wrong with good humor.

Where they used to attend church in person every Sunday, they caught the video highlights online when they became available on Monday morning.

We arranged weekly Zoom calls with them, to replace our frequent visits.

We used to say that their social life rivaled ours, as they got together with friends they have known since kindergarten (kindergarten!) several times each week for dinner, drinks or shows. Instead, during the pandemic, they’ve replaced those social events with going cruising together in their blue ’55 Chevy Bel Air, satisfying themselves with the feel of a car they first drove in their teens, the beautiful countryside and a wave at their friends, who sat at a safe distance on their front porches.

Our whole family has been proud of them to the point of bursting. But in September, after six months of this, my father-in-law got antsy and did the unthinkable: He went to the hardware store, ostensibly for a tool, but really to see his friends who tend to congregate there.

He caught hell for his modest indiscretion, first from his wife, and then from mine. They explained to him that he could have ordered the piece online. They reminded him that his actions can affect my mother-in-law, and her frail health, too. Finally, he had enough.

“I’m 85 years old,” he said. “Eighty-five! I’m careful, I wore a mask. What do you expect me to do, spend the rest of my days here in prison?”

That gave me pause — my wife, too. At 85, he had done the math. Despite his lucky genetics, he probably didn’t have many years left on this earth, and he didn’t want to spend one or two of them in isolation.

Understanding the risks and consequences of his actions, shouldn’t he be allowed to see his buddies at the hardware store, and maybe buy a tool while he’s there?

I thought about it from the perspective of my patients, many of whom also don’t have much time left on this earth, and the conversations we had been having in clinic.

At the beginning of the pandemic, I was “Dr. No,” prohibiting my patients, most of whom have devastated immune systems, from engaging in their usual social activities. Where much of what we had all been hearing from government authorities about Covid-19 transmission had often been contradictory, I wanted to give concrete advice.

Attending a family gathering to celebrate a birthday? No.

How about a high school graduation party for a granddaughter? No.

Visiting elderly parents in another state? Not safe for you or them.

A road trip to Montana with a friend (this from a man in his 80s with leukemia): Are you kidding me?

At the risk of sounding paternalistic, I feared for my patients’ health, as I did for my in-laws’ health, and wanted to protect them.

But perhaps because our understanding of Covid-19’s epidemiology has gotten better over time; or with our recognition that we may have to live with the pandemic for many months more; or given my father-in-law’s perspective that people at the end of life should make their own risk-benefit calculations, my conversations have now become more nuanced.

I’m more open to my patients not missing important life events, when there may not be much life for them left, provided they take precautions to avoid endangering themselves or those around them, particularly amid the most recent surge in Covid-19 cases.

One woman with leukemia was receiving chemotherapy early in 2020 when her daughter had a miscarriage. Now that her daughter is eight months pregnant again, can she hold the baby when it is born? Absolutely, let’s talk about how to do it safely.

Another patient’s mother died. Can she attend the funeral? Yes, with appropriate distancing, limited numbers, and personal protective equipment. But skip the reception.

The road trip to Montana? I still wasn’t comfortable with that, but my patient and his friend went anyway, took their own food, slept in their truck, and he returned without Covid-19.

And my father-in-law? He gets out of the house a little bit more than he used to, but not as much as he’d like. The rare times that he does nowadays, he is always masked and stays outdoors, and both he and my mother-in-law remain Covid-19-free.

Which strikes me as about the right balance.

Mikkael Sekeres (@mikkaelsekeres) is the chief of the Division of Hematology, Sylvester Comprehensive Cancer Center at the University of Miami Miller School of Medicine and author of When Blood Breaks Down: Life Lessons from Leukemia.”

Wondering What Caused the Cancer

Photo

Credit Stuart Bradford

“But what caused it?” my patient asked, referring to the failure of her bone marrow to make the blood cells the rest of her organs craved. She was profoundly anemic and seemed to tire from even asking the question.

Dozens of my patients have asked the same thing. Even a dozen dozen.

I think the question reflects a human desire to revisit events that occurred over a lifetime, and speculate whether a change in course could have avoided an untoward outcome.

In truth, though, except in very rare cases, it is almost impossible to say that a specific environmental exposure triggered a given person’s cancer. The majority of cancers arise randomly, as if thumbing their nose at our collective need to find a cause.

But that doesn’t stop me from trying, during the part of the clinic visit when it’s my turn to ask the questions. And sometimes, I even convince myself that I have uncovered that nugget of truth that explains disease.

One patient, a man in his 70s, told me he served in the military.

“Which branch?” I inquired.

“Navy,” he said proudly.

“Did you see any action?” I asked.

He glanced at his wife briefly, as if checking in with her that it was all right to tell this story she had probably heard hundreds of times before. She nodded slightly, giving her permission.

“I was on one of the ships that was active during the Cuban Missile Crisis,” he said.

“Wow!” I said, incredulous. “What was that like?”

“Hot,” he answered, laughing. “And humid. It was like a living hell.”

I shook my head in disbelief, not saying anything, encouraging him to go on.

“Yeah, in fact, the only way my buddy and I could escape the heat was at night. Instead of lying in our bunks, we put a mattress on the ground in the hull, in between these two metal cases. The metal was cool at night. They kept the nuclear weapons in those cases.”

A nuclear arsenal a foot from his bone marrow. Perhaps, more than 50 years ago, that was the culprit. Though I’ll never really know for sure.

Another patient, a few years ago, told me she used to live in Nevada.

“Any exposures to chemicals or radiation you’re aware of?” I asked her, as I ask all of my patients.

“Not that I can think of,” she answered, and then chewed on her lip as she thought about it. I stayed quiet.

“Well,” she started chuckling to herself. “I used to live in Nevada in the 1950s. And I remember a couple of times that fliers would be posted on the telephone poles inviting the entire town outside to watch the huge mushroom cloud that would follow the nuclear bomb testing nearby. So we’d all stand outside and watch, and then the hot winds from the explosion would pass through the town, almost knocking us over.”

I pictured the radioactive breeze, encircling her impressionable bone marrow stem cells when she was just a girl.

I’ve had patients who describe working in shoe stores where they would take an X-ray of a customer’s foot as a gimmick to measure them for the perfect-fitting shoe, without a lead vest for protection. Or of being employed by a tire manufacturer and soaking, day in and day out, in a vat of benzene, a chemical we now know to be a potent carcinogen. Even my uncle once revealed to me that the acne on his back was treated with radiation in the late 1940s. He died of leukemia a few years ago.

Is it possible that these exposures, which occurred decades earlier, could have initiated the cancer that reared its head in my septuagenarians and octogenarians?

Investigators at the Atomic Bomb Disease Institute, established in 1962 in Nagasaki, Japan, have followed survivors of the bomb we dropped in 1945 to study late effects of radiation on the human body. They even have information on precisely where each person was, in relation to the bomb’s epicenter, to measure how much radiation that person was exposed to. In one study, they examined the incidence of myelodysplastic syndrome, a type of bone marrow cancer, in people given the diagnosis between 1985 and 2004. Those who were closest to the explosion, who received higher doses of radiation and who were younger when the bombs were dropped were at highest risk of developing the cancer. The median age at the time of exposure to radiation was 9, and at the time of the myelodysplastic syndrome diagnosis was 71.

It isn’t entirely crazy, then, to think that toxic events that occurred when my patients were young could have induced damage to their bone marrow that remained quiescent until they were well past retirement age.

Or maybe I’m being just as eager as my patients in grasping for any etiology for their cancer other than “dumb luck.” As if identifying a cause would enable me somehow to control it better.

Dr. Mikkael Sekeres is director of the leukemia program at the Cleveland Clinic. Follow him on Twitter @MikkaelSekeres.

When Cancer Treatment Offers Hope More Than Cure

We joked that she had nine lives.

And like a cat, over the years, no matter the adversity — the extreme toxicities that resulted from her many rounds of chemotherapy, the bowel perforation that left her with an ostomy, the trips to the intensive care unit — she always landed on her feet, the wattage of her personality undimmed.

With the most recent return of her leukemia in the fall, I asked her, not for the first time, if she had been through enough, and would like to forgo any more treatment.

Photo

Mikkael Sekeres, M.D.

Mikkael Sekeres, M.D.Credit

“I’m not ready to give up yet,” she told me. “I still got a whole lot of living yet to do.”

Her partner of 45 years was sitting next to her, his arms crossed over his Cleveland Browns shirt, his hoary beard making his reaction to her comment somewhat inscrutable, other than his nodding. He came to every appointment, and always deferred to her, offering his opinions on the woeful state of Cleveland sports teams, but on nothing having to do with her medical condition. He just quietly supported her decisions. Though I had learned his name when I first met them years ago, I had since forgotten it in favor of what she called him – Boo. I referred to him as “Mr. Boo.”

Whenever her leukemia returned, she never asked about the likelihood that chemotherapy would work. Even if she had, my response would have been, by necessity, vague. No studies of patients who have had multiple relapses of leukemia have compared one treatment approach to another, and those that report outcomes in such patients suffer from what is called “confounding by indication.” In other words, people who are healthier are more likely to be offered chemotherapy, and thus more likely to live longer regardless of what they received. My patient was just such a person.

She entered the hospital to receive more chemotherapy, and as before became profoundly ill, narrowly skirting death yet again. Five weeks later, her blood counts had returned to normal, indicating that the leukemia had receded one more time, and she was back in clinic. I walked into her room to give her the good news.

She was a shadow of her former self.

Slumped in a wheelchair, she sat listing to one side, clutching a tissue in one hand. Mr. Boo sat close by, his arms crossed over a Cleveland Cavaliers shirt. I nodded to him and then asked her how she was doing.

“I’m tired, Lord have mercy I am tired,” she answered. Mr. Boo said nothing. I moved a chair next to hers and held her hand as she cried quietly, the three of us absorbed in her emotions, enveloped by the silence in the room.

“This one was tough,” I said eventually, stating the obvious. She nodded. I turned to her partner. “How’s she doing at home, Mr. Boo?”

“Oh, she’s doing,” he said, rearranging himself to sit up in his chair a little straighter. “It’s hard, though. She spends most of her time on the couch, and gets from there to the bathroom and back. But that’s about it.”

I turned back to my patient, still holding her hand. “How about we take a little break from the treatment?”

She nodded, and we sat in silence again. After a while, she asked “When we gonna get started on chemo again?”

I looked uncertainly at her and then at Mr. Boo. He looked back at me, awaiting my reply. This time, I rearranged myself to sit up a little straighter in my chair.

“Well, I have to wonder if giving you more chemotherapy is the right thing to do, with all that you’ve been through. I’m wondering if we should be talking about bringing more care into your home, to assist both you and Mr. Boo. Maybe even hospice.”

I had said the word.

Though I explained to her the many benefits of hospice, how their providers could help her at home in a way I couldn’t in relieving her symptoms, and in making her more comfortable, she didn’t meet me in the eyes for the rest of the appointment, almost as if I had betrayed her.

She hadn’t been eating or drinking much at home, so I admitted her to the hospital for a few days for hydration and she perked up, rising like Lazarus yet again, and returned to my clinic the following week.

She was smiling, laughing, had been doing well with physical therapy, and even was able to get out of her wheelchair to the exam table.

And she wanted to discuss the next round of chemotherapy.

For my patient, I came to see, treatment was inextricably linked to hope, and I suspected that it was her hope, much more than the chemotherapy, that had kept her going years beyond what I would have predicted.

But I was the one who had to keep writing orders for the chemotherapy, albeit in low doses, that was keeping her hope, and thus her, alive.

Was that so wrong?

Dr. Mikkael Sekeres is director of the leukemia program at the Cleveland Clinic.

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