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AML Patient Story: I Know What It’s Like

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Published on October 9, 2020

Sharing My Experience as an Acute Myeloid Leukemia Patient

Acute myeloid leukemia (AML) is an often-aggressive form of blood cancer, and each individual’s experience with the disease can differ vastly. Listen to an AML survivor’s first-hand story of his journey with AML, including a detailed account of his diagnosis, treatment path and recovery. Steve Buechler, author and former Professor of Sociology, will share why he chose to undergo a stem cell transplant, what he learned throughout his “cancer odyssey,” and his practical advice for other AML patients.

My Cancer Odyssey

In June of 2016, I was anticipating one more year of teaching sociology before a carefree retirement. Life was good in every way. But a routine physical revealed dangerously low white blood cell counts. My doctor referred me to a hematologist, who recommended a bone marrow biopsy, that ultimately detected acute myeloid leukemia. Within 48 hours, I was hospitalized and began a week-long, 24/7 chemotherapy cocktail.

My hospitalization continued for the next 35 days. After chemotherapy, I became severely immunosuppressed and battled a number of predictable side effects. By my fourth week, things improved, and a repeat biopsy revealed no evidence of leukemia.

When I was first told to expect a five-week hospital stay, I was dumbfounded. I realized I needed ways to cope with how my world had suddenly become very small and quite precarious. Over the ensuing weeks, I cultivated several strategies that carried me through my treatment and recovery.

I practiced mindfulness, meditation, and yoga. They helped me banish thoughts about the past and anxieties about the future, and to nonjudgmentally accept and live in each moment as it unfolded. I did as much physical exercise as my circumstances allowed, including stretching, isometric exercises, and hall walking. I did it mindfully, and these routines increased my energy and lifted my spirits.

I was a pro-active patient. I made my bed, organized my hospital room, and structured my days with new routines of meditation, exercise, and writing. I actively collaborated with my medical team in managing my care. Being in charge of these activities gave me a sense of purpose.

I maintained my sense of humor. Sharing jokes and witty banter with my medical providers broke the ice and humanized our consults. It also gave friends and family a way to relate to me as the person I’d always been rather than the patient I’d recently become.

I relied on a supportive belief system. For some, that’s religion. For me, it was a secular worldview based on my social science background. It encouraged me to learn about my illness and treatment, and it fostered a practical, problem-solving approach to the challenges they posed. 

Finally, I wrote my story. I emailed detailed reports about my status and reflections to a large group of correspondents. Writing for others helped me understand my odyssey so I could articulate it for them. This writing was a psychic survival mechanism.

When I learned my cancer had an “intermediate risk” of relapse, I faced a difficult decision between more chemotherapy or a stem cell transplant. After researching my options and getting second opinions, I chose the transplant. My logic was that if I had more chemotherapy and it didn’t work out, I would regret not pursuing the transplant. If I had the transplant and it didn’t work out, at least I would feel as if I gave it my best shot.

In October of 2016, I received a double cord blood stem cell transplant. It was preceded by high dose chemotherapy and full-body radiation to gradually destroy my compromised immune system. It was followed by two and a half weeks of recuperation before hospital discharge.

Engraftment happened surprisingly quickly. I had playfully named my baby donors “Ralph” and “Gwen.” Three weeks after the transplant, another biopsy revealed that "Ralph" was 99% engrafted. We’ve been getting along ever since.

After a month of extreme fatigue, bone aches, and lingering nausea, several milestones followed. One month out, my daily clinic visits became less frequent. Three months out, I began tapering my antirejection medications. Six months out, I stopped those and a dozen other medications. At that point, I was able to accept and embrace the reality that I had survived my disease and treatment and was actually cured.

In retrospect, I hit the treatment trifecta. I got into remission on the first try. "Ralph" fully engrafted in three weeks. And I’ve had no graft-vs.-host-disease. In the sweet words of my transplant oncologist, “this is as good as it gets.”

I benefitted from a combination of excellent medical care, a strong social support system, some good luck, and my pro-active coping strategies. I’ll never know if these strategies contributed to my physical survival, but I’ll always know they preserved my sanity and sustained my identity during one of the most harrowing periods of my life.

I’m left with unbounded gratitude toward those who saved my life. I can’t ever repay that “debt,” but I am paying it forward with my memoir, talks, blog posts, webcasts, and being a peer volunteer visiting with current patients. I’ve witnessed incredible resilience across a wide spectrum of patients, and firmly believe that finding your inner strength can help all patients become survivors.

See more about my cancer odyssey at http://www.stevebuechlerauthor.com/.

By Steve Buechler

Transcript | AML Patient Story: I Know What It’s Like

Steve Buechler: I waited for those test results for weeks and weeks, and when they finally back, I figured, "I'm going to know, low, I do chemo, high, I get a transplant." And they said, "You're in an intermediate risk category." So, I threw up my hands and said, "Well, what does that mean?"

What is Acute Myeloid Leukemia?

My diagnosis was called acute myeloid leukemia (AML). It's a form of leukemia, which is a cancer of the blood, and so the cancer cells literally circulate all throughout your body in the bloodstream. And there's lots of types of leukemia, and myeloid just refers to the part of the bone marrow that's affected. But the most important word is probably acute, which means this is a very aggressive, fast-moving cancer.

I had one oncologist tell me, "Once it's diagnosed, life expectancy can be measured in days or weeks, months if you're lucky." So, that's how fast it moves. They don't stage it, like if you're stage one, two, three, four. By the time it's detected, it's essentially at stage four. It's all throughout your body and your bloodstream. So, it's a pretty aggressive, pretty dangerous disease. It needs immediate treatment.

One of the unusual parts of that, of course, is that with no tumor, I really had no pain. And nurses would routinely come into my hospital room and say, "Where are you on the pain scale today, from zero to 10?" And I would say, "I don't have any pain." It's just not a part of how it works. In fact, I never had any symptoms that I could directly attribute to the leukemia itself. Everything that made me feel bad, I could attribute to chemotherapy or radiation, the treatment itself. So, not only didn't I know had the disease before diagnosis, it was almost hard to believe I had it after diagnosis.

Why Did You Decide to Have a Stem Cell Transplant?

I decided to go for the transplant. And this is now four months after my initial diagnosis and treatment. In fact, that amount of time is getting a little risky, so they said, "We're going to do one round of what they call consolidation chemotherapy. We're going to give you some more chemo to keep this thing in remission until you can get the transplant." So, my focus wasn't so much on how will this change my life when it's over, as it was on what's happening this week, what's happening next week, what's happening after that.

In some ways, from the outside, if you looked at me, you would say, "It's not evident that you ever had this cancer, it's not inhibiting or limiting your activities in any way." I'm very grateful for that. On the inside, subjectively, it's had a profound impact on me, and it really has to do with an overwhelming sense of gratitude and just a very different perspective on virtually every aspect of life.

I've gone through what you're going through, and I can tell you my story. It doesn't mean your story is going to be the same, but I can give you a personal account of what it's like to have this disease and to survive this disease. Because as a patient, you're just inundated with all kinds of technical information and glossy brochures and big three-ring binders and all this generic information.

It's overwhelming. It's frightening, because they feel obligated, morally and ethically and legally, to inform you of all the things that could happen. So, that's a little overwhelming, and I really wished I could have had someone like the person I'm trying to be for new patients now.

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