Category Archives: Steve’s Odyssey

Surviving Cancer/Sustaining Self 4: Humor

My previous posts have described how mindfulness, physical activity, and a pro-active stance sustained me during my treatment for acute myeloid leukemia.  Alongside these strategies – and not to be underestimated – was maintaining my sense of humor.

To be sure, cancer is no laughing matter. Nothing about it is easy, and it’s certainly not funny. That is precisely why I found it essential to retain my sense of humor upon my diagnosis and throughout my treatment.

Doing so became an antidote to the somber reality of what I was facing. It was a quiet form of resistance that kept the cancer at arm’s length. In my mind, humor was a way of saying you may make me sick and may eventually kill me, but I’m still going to enjoy a good (or bad) joke along the way.

In my interactions with doctors, nurses and staff, I routinely used humor to break the ice and lighten the mood.  It was not a denial of my situation as much as a way of transcending it, and they seemed to appreciate the respite it provided from the gravity of my condition and the details of my treatment.

In my periodic, written reports to family and friends, I concluded each message with a joke. They weren’t necessarily great jokes. They weren’t necessarily new jokes. Some might even say that I favored quantity over quality. But the process of finding and composing them was a welcome diversion that elevated my spirits even on dark days.

For my readers, I suspect they lightened the impact of my often-dire news and let people know I was not losing hope.  And it let them know they could connect with me as the person I’ve always been and not just as a cancer patient.

The standard disclaimer in this series of posts still applies. I have no idea if my reliance on humor had any direct bearing on my successful outcome, but it certainly sustained my spirit over the long haul.

And so, in closing, I would just like to say:

An agnostic, dyslexic, insomniac walks into a bar.

The bartender serves him a drink and says, “Hey pal, you look really tired.”

The guy says, “Tell me about it. I lay awake every night wondering if there really is a Dog.”

Surviving Cancer/Sustaining Self 1: Mindfulness

Surviving Cancer/Sustaining Self 2: Physical Activity

Surviving Cancer/Sustaining Self 3: Being Proactive

steve bSteve Buechler is a recently retired sociology professor and cancer survivor.  In 2016, he was diagnosed with acute myeloid leukemia and successfully treated with chemotherapy, radiation, and a stem cell transplant. He has since become a big advocate of writing stories as a survival strategy in the face of life-threatening illness.  His own story is available in “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” his memoir from Written Dream Publishing.

 

 

 

 

 

 

 

Surviving Cancer/Sustaining Self 3: Being Proactive

My treatment for acute myeloid leukemia required four separate hospital stays.  They began with a 37-day stint for initial treatment and concluded with a 25-day stay for my actual transplant, with two, one-week stints in between to keep my disease under control until my transplant.

From my first days in the hospital, it was evident that there was very little I could control in my new circumstances. Rather than indulging in despair or frustration, I resolved to focus on my immediate environment and be as pro-active as possible in that small world.

Toward that end, I took charge of my room by making my bed every morning and fastidiously keeping everything neat and tidy throughout the day. I began the exercise routines and mindfulness practices described in previous posts.  I wrote regular reports to keep people informed about my status. It wasn’t much, but it still provided some sense of agency and control within my new “home.”

I also brought a pro-active attitude to my medical care. I looked forward to my daily consultations with the doctors whenever they happened to drop in.  I always had questions ready about my treatment, medications, and progress. Their willingness to entertain my questions and concerns felt very supportive, and our consultations came to feel like a synergistic collaboration.

For example, there were at least two occasions when I experienced unwelcome side effects from my medications. As they speculated on the causes, I would add my own observations about the dosing, timing and effects of various drugs.  Through these collaborative discussions, we successfully resolved some problems that had perplexed each of us individually.

My most frequent and prolonged interactions, however, were with my nurses. From the start, I sought to create some rapport as they tended to my needs.  This began as a conscious strategy on my part, but quickly evolved into a genuine appreciation for all they did and a grateful acknowledgement of their challenges throughout the day.

When time permitted, we would chat about relatives, crack some jokes, commiserate about politics, or share life stories. Each of these conversations reframed their clinical care-giving into a more human and personal interaction. The small efforts I made to establish rapport were repaid many times over in the care I received.

In all these ways, I sought to be an active subject in my care rather than a passive object receiving medical ministrations. Now for the standard disclaimer. I have no idea if my proactive stance had any direct bearing on my successful outcome, but it gave me a significant role in my medical drama that was rewarding in itself.

Surviving Cancer/Sustaining Self 1: Mindfulness

Surviving Cancer/Sustaining Self 2: Physical Activity

steve bSteve Buechler is a recently retired sociology professor and cancer survivor.  In 2016, he was diagnosed with acute myeloid leukemia and successfully treated with chemotherapy, radiation, and a stem cell transplant. He has since become a big advocate of writing stories as a survival strategy in the face of life-threatening illness.  His own story is available in “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” his memoir from Written Dream Publishing.

Surviving Cancer/Sustaining Self 2: Physical Activity

Alongside the practice of mindfulness described in my last post, I also coped with my prolonged treatment for acute myeloid leukemia by doing as much physical activity as possible.

My induction chemotherapy and initial recovery occurred during a 37-day hospital stay.  I arrived with no debilitating symptoms, so I was restless right from the start. I began doing some isometric exercises and stretching to go along with my evening yoga. My routine was enriched when physical therapists gave me additional exercises and some resistance bands to tone various muscle groups.

But my most valued activity was walking the halls.  I walked in the late morning, late afternoon, and before bedtime, pulling my IV pole alongside like a faithful companion.  I followed a serpentine path down the main hallway and every side corridor, repeating it three times on each outing.  They tell me I was walking about five miles a day, which is ironically more than I ever walked in my pre-cancer days.

When I was feeling adventurous, I would hop on the elevator and go down to the main floor and mingle with the civilians.  I would also go out a side door to visit a garden area and feel the sun on my face.  And sometimes I would march out the front door to drop a utility bill in the mailbox.  I was once playfully warned by a nurse that if I had taken one step further, it would have triggered a “code white,” meaning a runaway patient. But like a dog respecting an invisible fence, I never strayed beyond my permitted perimeter.

It felt great to move, but my walking also brought an unexpected benefit.  On my strolls, I would encounter nurses and staff all along the way.  They would often greet me, and we would chat for a minute if time allowed.  It gradually dawned on me that this was the most rewarding part of my walking routine: that I was seen, recognized, and acknowledged as a person and not just a patient.

When I moved to my transplant hospital for a 25-day stay, I was confined to my room for the duration to minimize the risk of infection during the transplant process. I did get a treadmill in my room as a poor substitute for my prior hall walking, but it never could match the social benefits I previously enjoyed roaming the halls.

Standard disclaimer: I have no idea if my physical activity had any direct bearing on my successful treatment outcome, but it sure maintained my spirits during a difficult time.

Surviving Cancer/Sustaining Self 1: Mindfulness

Steve Buechler is a recently retired sociology professor and cancer survivor.  In 2016, he was diagnosed with acute myeloid leukemia and successfully treated with chemotherapy, radiation, and a stem cell transplant. He has since become a big advocate of writing stories as a survival strategy in the face of life-threatening illness.  His own story is available in “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” his memoir from Written Dream Publishing.

Surviving Cancer/Sustaining Self 1: Mindfulness

During my lengthy and ultimately successful treatment for acute myeloid leukemia, there were several practices I deliberately engaged in to sustain myself throughout the ordeal.  These will be the subject of my next few posts.

The first thing that sustained me was mindfulness.  It helped me bring a rich, non-judgmental awareness to each moment as it occurred and realize that everything else – ruminating about the past or worrying about the future – is just noise that detracts from the present moment.

Throughout multiple hospitalizations, prolonged treatments, and gradual recovery, mindfulness reminded me that although I could not control what I was experiencing, I could control how I experienced and responded to it.

My hospital days thus followed a routine of mindful morning stretching and exercises, deep breathing and meditation during the day, evening yoga poses, and a bedtime body scan that led to a peaceful sleep interrupted only by the inevitable intrusions that punctuate every hospital night. The cumulative effect of these practices was a calm acceptance of my situation alongside a serene hope that all would work out for the best.

As I noted in a previous post, I will never know if there was a causal connection between my practice of mindfulness and my recovery and survival. But I do know that this awareness kept me grounded, preserved my identity, and sustained myself through some harrowing times. That in itself felt like a major accomplishment.

 

Steve Buechler is a recently retired sociology professor and cancer survivor.  In 2016, he was diagnosed with acute myeloid leukemia and successfully treated with chemotherapy, radiation, and a stem cell transplant. He has since become a big advocate of writing stories as a survival strategy in the face of life-threatening illness.  His own story is available in “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” his memoir from Written Dream Publishing.

Who Survives Cancer…. and Why?

When people are diagnosed with cancer, the question “why me?” looms large.  For those fortunate enough to survive, the question arises again. While definitive answers to who gets sick and who gets better remain elusive, the questions remain.

In 2016, I was diagnosed with acute myeloid leukemia. I didn’t spend much time asking “why me” because it didn’t seem like a healthy road to go down. After being successfully treated and recovering, I have the luxury of pondering the second question.  Why did I survive while others did not?

In transplant support groups, I often hear people say that everything happens for a reason. I think that is true in a narrow, probabilistic sense. Personal medical history, comorbidities, environmental factors, and genetic abnormalities can dramatically alter the chances of getting and surviving cancer.

But when people say everything happens for a reason, they usually mean that there is a larger, metaphysical reason for the differential survival of patients. As a sociologist, I understand the quest for meaning in the face of life-threatening illness and I respect belief systems that provide comfort and reassurance.

But I just don’t buy it. I don’t think there is an overarching rhyme, reason, or plan that explains life’s most fateful outcomes, whether “miraculously” good or horrifically bad.  Despite our impulse to find larger meanings in such events and after acknowledging how medical interventions can improve our odds, I think there is an irreducible randomness when it comes to surviving a lethal illness.

These thoughts were triggered when people gave me “credit” for surviving my disease. I have always felt uncomfortable accepting such credit.  Part of my discomfort stems from the coupling of credit and blame and the unintended consequences of such thinking.  For example, does crediting survivors for their “positive thinking” imply that non-survivors just weren’t positive enough?

As a patient, there were several coping mechanisms I relied upon throughout my treatment. But I will never know if there was any causal connection between those practices and my positive outcome. What I do know is that they maintained my sanity and preserved my identity during the most challenging experience of my life.

While acknowledging that outcomes may be unpredictable and somewhat random, sustaining ourselves along the way is a worthy goal in itself.  And if it does enhance our odds of survival, so much the better. My own story of what I did to sustain my self will be the subject of posts to follow.

 

Steve Buechler is a recently retired sociology professor and cancer survivor.  In 2016, he was diagnosed with acute myeloid leukemia and successfully treated with chemotherapy, radiation, and a stem cell transplant. He has since become a big advocate of writing stories as a survival strategy in the face of life-threatening illness.  His own story is available in “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” his memoir from Written Dream Publishing.

Doctors as Detectives

During my prolonged treatment and recovery from acute myeloid leukemia, I spent many weeks in the hospital with a severely suppressed immune system as a side effect of chemotherapy. This condition is an open invitation to any infectious agents who happen to be in the neighborhood, and I had my share of them.  They included colitis, E-coli, the cytomegalovirus, and several others that were never definitively identified.

I was also on numerous medications, including prophylactic antibiotic, anti-viral, anti-fungal, and anti-rejection drugs as well as other drugs to blunt the side effects of these initial medications.  These drugs nonetheless produced some nasty side effects on their own or in interaction with each other.

The upshot was that on any given day, I would experience symptoms that included fevers, headaches, intestinal indignities, rashes, blurred vision, light-headedness, muscle aches, bone pain, and even persistent hiccups. It was on these occasions that I became acquainted with one of my now-favorite medical specialties known as infectious disease doctors.

I’d only known them as heroic figures in melodramatic movies about plagues threatening all humanity.  But on a more mundane and realistic level, they were also everyday heroes who often provided me relief from a myriad of infections and side-effects.

Their visits would be prompted by my report of unpleasant symptoms or obvious signs like spiking fevers. They would then begin looking for clues like detectives on the trail of a suspect.  They would consider all the medications I was taking as well as their doses and scheduling.  They would listen carefully to my recitation of symptoms. They would prioritize which medications were necessary and which could be eliminated or replaced with others. And they would order blood work, stool samples and other tests to nail down the culprits.

It would often take several days to grow and identify infectious critters in the lab, and sometimes a definitive diagnosis remained elusive.  Even so, their experience, their listening skills, and their hunches often led to solutions that relieved not only my symptoms but their underlying causes.

While it was unpleasant to weather so many infections and side-effects, I came to welcome visits from these doctor/detectives who so often cracked the case, identified the villain, and brought me relief so I could focus on healing and recovery.

Steve Buechler is a recently retired sociology professor and cancer survivor.  In 2016, he was diagnosed with acute myeloid leukemia and successfully treated with chemotherapy, radiation, and a stem cell transplant. He has since become a big advocate of writing stories as a survival strategy in the face of life-threatening illness.  His own story is available in “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” his memoir from Written Dream Publishing.

When is a Little Knowledge a Good Thing?

In the summer of 2016 in seemingly good health, I was diagnosed with acute myeloid leukemia through a routine blood test and subsequent bone marrow biopsy.  In 48 hours, I went from a carefree existence to a week-long, 24/7 chemotherapy drip and a 5 ½ week hospital stay.

Although my doctors described my treatment plan, in retrospect it’s remarkable how little I learned about my disease.  This cancer is not “staged,” because it is so unpredictable, and there were no discussions of long-term prognosis, survival rates, or other such matters.  For my part, I made a conscious decision not to surf the internet collecting all sorts of dubious, unverifiable information about my disease.

Instead, I simply trusted my doctors as we moved through my initial treatment one step at a time: induction chemotherapy, temporary remission, infection management, count recovery, and emerging molecular and cytogenic data on my cancer.  Throughout this period, my doctors’ calm, professional demeanor provided reassurance that my disease was a problem they could solve.

It wasn’t until I was contemplating a stem cell transplant that I heard the first hard numbers and survival rates for consolidation chemotherapy versus a transplant. Even the best-case scenarios looked pretty grim, and it dawned on me that I was fortunate to have survived up to that point.

I proceeded to transplant, recovery and survival.  As I got better, I gradually learned even more about the lethality of my disease. I now believe that it was for the best that I did not initially know all the dire things I eventually came to learn about AML. As it was, I could maintain a more hopeful outlook over my many months of treatment.

I don’t claim that this path is appropriate for every patient or disease.  But I was struck to learn of some research on AML patients that is consistent with my story. In the webcast “Coping with the Emotional Side Effects of AML” (available at patientpower.info), Dr. Thomas LeBlanc reports on interview data from AML patients. Among the more striking findings is that the more accurately patients understood the likely outcomes of their disease, the more emotional distress and sadness they experienced.

I would never advocate that ignorance is bliss. But my experience — backed up by this exploratory research — suggests that just a little knowledge can be a good thing when it comes to surviving AML.

 

steve bSteve Buechler is a recently retired sociology professor and cancer survivor.  In 2016, he was diagnosed with acute myeloid leukemia and successfully treated with chemotherapy, radiation, and a stem cell transplant. He has since become a big advocate of writing stories as a survival strategy in the face of life-threatening illness.  His own story is available in “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” his memoir from Written Dream Publishing.

 

 

On Patients and Emotional Labor

Given my recent posts on the emotional labor of doctors and nurses, it only seems fair to turn the lens on myself and ponder how I experienced and expressed a variety of emotions throughout my treatment for acute myeloid leukemia.

In the early stages of my care, I sought to be a “good patient” and cultivate positive relationships with my doctors and nurses.  I was seeking to transform routine, clinical encounters into more human and humane interactions. But it was also a strategic move on my part to insure I would receive the best possible care.  While patients’ demeanor should not affect their quality of care, nurses and doctors are also people with their own emotional states.  Getting on their good side seemed like a wise course.

In the later stages of my treatment, it became evident that I was on the road to recovery.  As it gradually dawned on me that my doctors had saved my life with their medical knowledge, treatment plan, and attentive care, I experienced a flood of powerful emotions: unbounded good will, heartfelt gratitude, and a deep appreciation for them and how they practiced their craft.

While I expressed this appreciation, I also felt a certain reticence about whether or how to convey the depth of these feelings.  After all, a famous sociologist once argued that professional role relationships like doctor—patient should be “affectively neutral” and that strong emotional sentiments should be reserved for family, lovers and friends.

I’m guessing that this famous sociologist was never successfully treated for a life-threatening disease. But my experience left me seeking some further outlet for the profound gratitude and deep affection that I felt toward my doctors upon my recovery and survival.  The best I could do was pay it forward through my volunteer work and peer counseling with blood cancer patients. In some small way, those activities help me feel like the benefits I received from my doctors and nurses live on in what I try to bring to current patients as they navigate their own medical destinies.

And just in case my doctors stumble across this entry, please know I cannot thank you enough.

Read the other posts in this series:-

On Doctors and Emotional Labor

On Nurses and Emotional Labor

 

steve bSteve Buechler is a recently retired sociology professor and cancer survivor.  In 2016, he was diagnosed with acute myeloid leukemia and successfully treated with chemotherapy, radiation, and a stem cell transplant. He has since become a big advocate of writing stories as a survival strategy in the face of life-threatening illness.  His own story is available in “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” his memoir from Written Dream Publishing.

 

On Nurses and Emotional Labor

My last post described how doctors appear to rely on a specific feeling norm in managing and displaying emotional states in relation to their patients. The pattern I saw in my own care was initial emotional distance from doctors that gave way to greater emotional availability only when my prognosis significantly improved. In this post, I offer some speculations about the differences between doctors and nurses when it comes to emotional labor.

Whereas doctors may be permitted an initial clinical detachment from their patients, nurses are socialized to be more explicitly caring in their interactions with patients.  This distinction between the emotional distance of doctors and emotional availability of nurses is furthered reinforced by the gender division of labor that leads to male predominance among doctors and female predominance among nurses.

For all these reasons, nurses face even bigger challenges than doctors in managing emotional involvement with patients. This difference in role expectations is reinforced by the daily reality that nurses typically spend much more time with patients across a broader range of interactions than doctors typically do.

The upshot is that whereas my doctors only became emotionally accessible late in the game, most of my nurses were friendly, nurturing and emotionally supportive from the beginning of my treatment and without regard for my prospects of survival. While this is beneficial for patients, it can be challenging for nurses when patients they have come to care about do not respond to life-saving treatments.

In extreme cases, this may lead to the suicidal behavior reported in an earlier post on this site.  But even absent such tragic outcomes, the challenge of managing emotional states looms large for nurses in general and some in particular.

As a final case in point, I recall a conversation about one of my nurses I’ll call Kelly.  Even compared to other nurses, Kelly was unusually warm, nurturing and supportive throughout my extended care. She became my “favorite” precisely because of the emotionally rich bond we formed right from the beginning.

It was only when I mentioned this to anther nurse that I learned of the downside of Kelly’s demeanor.  I was told that when Kelly’s patients did not survive, she was emotionally devastated and took a long time to psychologically recover.  Because my treatment went well, I did not witness this challenge.  But it stands to reason that while such emotional availability can be rewarding for both nurse and patient, it is also extremely stressful for nurses when their patients do not recover from their illness.

It may be that the most profound challenges of nursing lie not in technical mastery of clinical procedures, but in crafting a “feeling norm” that balances caring for others while also caring for self.

 

steve bSteve Buechler is a recently retired sociology professor and cancer survivor.  In 2016, he was diagnosed with acute myeloid leukemia and successfully treated with chemotherapy, radiation, and a stem cell transplant. He has since become a big advocate of writing stories as a survival strategy in the face of life-threatening illness.  His own story is available in “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” his memoir from Written Dream Publishing.

On Doctors and Emotional Labor

A recent post on this site about stress among health care providers reminded me of some recent work in my discipline on the sociology of emotions. Research in this area has shown how occupations often include “feeling norms” about how practitioners should manage and display appropriate emotional states as part of their job.

During my prolonged treatment for acute myeloid leukemia, I witnessed one such “feeling norm” on the part of several of my doctors.

In the early stages of my treatment, I received induction chemotherapy and was exploring my options for further treatment, including a stem cell transplant. During this time, I met with several oncologists. They were professional, clinical and informative in our interactions, but they also maintained emotional distance or neutrality.

This changed in the later stages of my treatment, after I had my transplant and it appeared I was on the road to recovery with no serious complications. Those same doctors became much more emotionally expressive, and our interactions had a warm, nurturing quality that had been notably absent before then.

My intuition is that this shift reflected an unspoken feeling norm about how doctors manage and display emotional states. Bluntly put, they were reluctant to make an emotional investment when their patient was still facing uncertain outcomes. Once my odds of survival had qualitatively improved, they allowed themselves to activate and convey a much stronger emotional bond with me.

It’s worth noting that these oncologists were also all women, so gender norms were certainly part of the dynamic. Nonetheless, this pattern of initial emotional neutrality giving way to subsequent emotional connection seems like a highly adaptive and relatively healthy way for doctors to deal with the unpredictable and sometimes tragic outcomes of cancer treatment.

This pattern was not as pronounced with my nurses, who displayed more emotional availability from the outset; that’s a subject for my next post.

 

steve bSteve Buechler is a recently retired sociology professor and cancer survivor.  In 2016, he was diagnosed with acute myeloid leukemia and successfully treated with chemotherapy, radiation, and a stem cell transplant. He has since become a big advocate of writing stories as a survival strategy in the face of life-threatening illness.  His own story is available in “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” his memoir from Written Dream Publishing.

 

 

 

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