Category Archives: Steve’s Odyssey

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.

 

 

 

Facing Chemotherapy 3: Your Own Worst Enemy

Chemotherapy kills fast growing cells and hence can be effective against cancer.  But it does not discriminate between healthy and malignant cells.  Hence, the trade-off for killing cancer cells is killing fast-growing, healthy cells as well.

The most serious side effect may be chemotherapy’s impact on the immune system. It drives down white and red blood cell counts as well as platelets. Low platelets can lead to unusual bleeding and low red blood cell counts can bring fatigue. Perhaps most important, low white blood cell counts leave us vulnerable to infectious agents we might normally resist and never even notice.

To counter this heightened susceptibility to infection, patients receiving chemotherapy must take various precautions to minimize their exposure to infection. Wearing masks, washing hands, limiting contacts, and even isolation rooms are just some of the precautions that patients routinely take.

As important as these practices are, they rest on the premise that infections arise from external sources.  This was how I interpreted an E-coli infection I acquired several weeks after receiving induction chemotherapy for my leukemia. I blamed the hospital environment for my misfortune until my doctors offered an even more plausible explanation.

Much to my surprise, most of us have E-coli bacteria peacefully residing in our gut throughout our lifetimes.  With a healthy immune system, these bacteria are well controlled and produce no troublesome symptoms. It is only when we are immunosuppressed that these bacteria can morph into major infections requiring aggressive, antibiotic treatment.

The same dynamic played out after my transplant.  I was given anti-rejection medication to allow my transplanted stem cells to take root and construct a new immune system.  This also caused immunosuppression and opened the door to another critter known as the cytomegalovirus. It is a common virus that resides in many of us but is usually well controlled by a healthy immune system.  When that system is compromised by anti-rejection medication, the virus can break out and require proactive treatment with anti-viral medication.

My encounter with E-coli taught me to never scoff at adult diapers again.  But more importantly, I learned that for all our well-intentioned efforts to minimize exposure to external agents of infection, sometimes we turn out to be our own worst enemy as “auto-infections” arise from deep within us.

 

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.

Facing Chemotherapy 2:Wait for it

When I received my first round of chemotherapy, I anticipated some nasty side effects.  What I didn’t realize, however, is that they take a while to show up. This led to a false sense of confidence about how well I was weathering my treatment.

My stereotype about side effects was evident in a question to my nurse as I was about to receive my first chemo infusion. I asked if I couldn’t get to the bathroom on time, where do I throw up? She smiled and said that was unlikely due to the premeds they used to control nausea.  What she didn’t say is that such side effects would take some time to appear. When I still felt fine a week after my treatment concluded, I got a bit cocky and smugly thought “I’ve got this.”

It was another few days before the expected effects appeared: depressed blood cell and platelet counts, nausea, fatigue, hair loss, several unidentified infections, colitis, an E-coli infection, and a full body rash. My smug confidence was replaced by a humbling awareness that I was every bit as vulnerable as I first thought; it just took a little longer than I expected. While the timing surprised me, my doctors just nodded as if to say this is what we expected all along.

A couple months later, I received multiple infusions of high dose, consolidation chemotherapy to keep me in remission until I could have my transplant. Perhaps because of the higher dose, it took only one week for a low-grade fever to appear. More disconcerting was some rectal bleeding that convinced me to head to the emergency room.  There, my white blood cell count registered .3 (normal = 3.8-11) and my platelet count was 4 (normal = 140-450).  The ER doctor simply said “there’s nothing there” to fight infection or control bleeding. He booked me for a week-long hospital stay and multiple platelet transfusions to control the bleeding.

I consoled myself by thinking that with this response, they must have given me top shelf chemo that would also be effective in bridging me to transplant. But I learned never to be smug about these matters again.  When facing chemotherapy’s side-effects, don’t celebrate early.  Instead, just wait for it and weather it as best you can.

 

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.

 

Facing Chemotherapy I: This Stuff Could Kill You

Steve’s Odyssey continued:

 When I was diagnosed with acute myeloid leukemia, I received an initial round of “induction” chemotherapy to get my disease into temporary remission and buy time to consider my long-term treatment options.

I had no prior experience with cancer or chemotherapy. My first lesson about this treatment was when my nurse Jane approached me wearing the hospital equivalent of a hazmat suit, face shield, gloves, and mask.  She then placed a thick mat over my torso to protect me from any accidental spillage of the drug. All this vividly symbolized the toxicity of the medication I was about to receive. I realized that while it was intended to cure me, this could only happen by first poisoning me.

It was some time later that I came across an arresting footnote in Susan Sontag’s Illness as Metaphor. She describes an incident in World War II when an American ship carrying mustard gas was bombed, releasing the deadly chemical. Some soldiers died from burns and drowning, but most succumbed to bone marrow poisoning from the mustard gas.

When some creative doctors realized that this lethal agent might also kill cancer cells, they fashioned a closely related chemical compound known as nitrogen mustard to treat blood cancers like leukemia and lymphoma. As I proceeded to my stem cell transplant, I received a chemotherapy drug called Cytoxan that is derived from this lineage of chemical weapons. The goal was to kill off both cancer cells and my diseased immune system and it worked.  Unlike those unfortunate sailors, however, I received a carefully calibrated dose followed by a cord blood transplant of healthy stem cells that jump started a new immune system.

One of my oncologists captured the role of chemotherapy in transplants succinctly by saying “first we bring you to the brink of death, and then we try to bring you back again.” Needless to say, I’m happy the second part worked as well as the first. More on chemotherapy in 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.

On Being A Hospital Virgin

 

I’m told I was born in a hospital, though I have no memory of it.  I do, however, have a brief newspaper story identifying me upon my birth as the 100,000th registered patient at Madison General Hospital, so I guess it really happened.

For the next 63 years, I was in good health and had no reason to be hospitalized. Then, in 2015, I developed a nasty bladder infection that triggered a four-day hospitalization for IV fluids and antibiotics. I received excellent care, but it was a totally new and sometimes confounding experience for this hospital virgin.

My guide through this unfamiliar terrain was a wonderful nurse named Jane. We developed a nice rapport over numerous visits checking vital signs, drawing blood, administering medications, and chatting on a wide range of topics.  There was, however, one thing I had to learn the hard way.

I awoke in the middle of my second night with a strong urge to get to the bathroom.  With impeccable logic, I unclamped the IV line from my right arm so I could make my way across the room.

In no time, there was blood everywhere.  I pulled the emergency cord and Jane came running in.  Once she realized what had happened and remedied the situation, we had a good laugh over my mistake.  The guy who had to clean up after me, however, did not share our sense of humor.

Little did I know that the bond I formed with Jane would be rekindled a year later when I was hospitalized with acute myeloid leukemia. More on that frightening story later. For now, I’ll just say that having Jane as my nurse once again was very reassuring as she administered my first chemotherapy treatment and I lost my hospital virginity for good.

 

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 forthcoming memoir from Written Dream Publishing.