Author Archives: Simi K. Rao

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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.

Holidays Past and Present

Holidays past and present.

Celebration has taken on a new definition since recovery:

In my using days I approached the holidays with a frenetic search for the wildest parties; where the flow of free booze was bountiful, the company raucous, and the music deafening.  Was I seeking fun and companionship?  Hell, no.  When I was sober, I was extremely uncomfortable in those surroundings, I didn’t particularly like the people, the boring conversations, or the atmosphere.  So why did I bust my ass to be part of that scenario?   Because during the holidays I deduced that I could drink twice as much as I usually did, and it would be socially acceptable.  That reasoning even spilled over into our family gatherings.  During the Holidays we all trekked to the liquor store to stock up on the fancier pleasures:  Attractively decorated bottles of Vermouth, Brandy, Creme DeMint, and good wines were, after all, a step up from the beer and bourbon which was our usual fare.  It mattered little that the irresponsible consumption by some of us would become the portal to heated arguments and the ruination of relationships.  The true meaning of the designated holiday was lost in the shuffle.

In early recovery, the Holidays can be extremely difficult.  A multitude of triggers are just lying in wait to coax the addict and alcoholic back out where their misery will be quickly refunded. Family functions rarely change because one member no longer imbibes. Christmas parties carry on.  Temptation stocks the shelves of drug stores and grocery stores.  Alluring advertisements of the bubbly stuff blare their invitations a few decibels louder from your T.V.  And tantalizing, large as life figures offer you a few sips from towering billboards. There seems to be nowhere to hide.  Below are a few proven tips that might alleviate the constant bombardment.

  1. Pick and choose which functions you are comfortable attending
  2. The same rule of thumb applies to both family gatherings and parties.  If you must go, take a recovering friend with you and make sure you are parked where you can make an early exit.
  3. Avoid the aisles that display the alcohol.
  4. Leave the room or mute the commercials.  Take that time to make yourself a cup of coffee with a favorite creamer or savor a cup of tea with spiced mullings.
  5. Keep your eyes on the road and avoid the temptation to fixate on the billboard splashing the booze from a crystal glass.
  6. Volunteer, and do something kind for someone less fortunate than you.
  7. And last but not least, think about the true meaning of the holiday, and send up a prayer for the opportunity to redefine your definition of the word Holiday.

Dallas H lives in a small city in the Northern Panhandle of West Virginia. In addition to being a recovering alcoholic, she is also a part-time employee at a local bank and a poet. Dallas considers herself to be just another run-of-the-mill alcoholic and refuses to allow that aspect of her makeup to define her. In 2018, Dallas celebrated 31 years of continuous sobriety.

The White Room (A Poem About Dementia)

The White Room

I lie on the bed

in the white room

They sit around me

These strangers with familiar voices

I think we are waiting for something

or someone.

These strangers, they look at me

They mutter words I don’t understand

A man in a white coat walks in

He stands next to my bed.

He speaks not to me,

but to these strangers

They are talking about me, I know.

About what, I don’t understand.

Irritated, I kick off the covers.

Mother! They chide me and pull them back.

About the poem: This is a poem about dementia, the hallmark of the disease being loss of memory. I write about a scene I came across during my rounds in the hospital—an elderly woman in the advanced stages of dementia is lying on the bed surrounded by her caring relatives. It’s difficult to know what’s going on in the poor woman’s mind because she has lost the ability to speak, even comprehend. Yet it’s apparent she’s unaware of her ailment. She doesn’t even know where she is or who she is with.

Dementia is a syndrome that results in gradual and progressive decline of previously acquired mental abilities that results in a loss of social and occupational functioning and ultimately to loss of independence. It is imperative to distinguish this from normal aging- normal aging never results in loss of independence. For the diagnosis of dementia there should be impairment in at least 2 of the following– memory/learning new information, executive function (ability to perform usual tasks such as handle finances that one was able to do before), perception (recognize people, hallucinations) and motor abilities (ability to write, draw, walk, coordination), language, social cognition. Alzheimer disease is the most common type (60-80%) followed by vascular dementia (in those who have suffered strokes). Other types such as Lewy body, Parkinson’s dementia, frontotemporal dementia are less common. Aging is the major risk factor. For vascular dementia risk factors are diabetes, HTN, heart disease, smoking and obesity (same as for heart disease). Other risk factors include history of head injury, APOE e4 allele, mid-late life depression, alcohol abuse, HIV infection. On the other hand, higher education and occupational advancement can lead to reduced risk or delayed onset of dementia. Dementia also results in reduced life expectancy–an average of 4 yrs for vascular and 8 yrs for Alzheimer’s and Lewy body dementia.

Therefore, if you are aware of someone who is missing appointments and arriving at the wrong time/date all the time, is not able to follow instructions, is losing weight, is failing to thrive, has new or worsening depression and or anxiety, is exhibiting changes in behavior, poor judgment, loss of initiative, he or she could have dementia and it is important get an evaluation. Though at present there is no specific pharmacologic treatment that can halt or reverse neurodegeneration there are a few drugs that have been shown to slow down the symptoms of dementia. What is most important is understanding what a loved one with dementia is going through and providing them support and a loving and safe environment.

Here is an excellent website that provides guidance for caregivers.

simi blog imageDr. Simi K. Rao, is a board certified internist and hospitalist currently practising in the Denver area. She has special interest in preventive medicine. She is also a published author of four novels. Her newest book of poems and short stories ‘Under the Shade of The Banyan Tree’ will be published in December ’18. You can learn more about her work at https://simikrao.com//

Treat the Child and the Parent

My first job as a physician assistant was with a pediatric practice in Maine. I began working in June, so I was well-acclimated by the time winter arrived. I’d gotten to know many of the young patients as well as their caring mothers and fathers by the time snow started flying.

Many of the mothers were experiencing motherhood for the first time, and they were as uncertain about all the pitfalls of raising a child as the child was about being manhandled by a stranger, albeit gently and kindly. My job as a PA had me treating the parent as much as the child, as it turned out. I always allowed time to answer questions asked by the parents in an effort to avoid having them go away confused and uncertain about their child’s situation and their treatment plan.

Since part of my responsibility was to be on call after regular office hours, my cell phone number was made available to all our patients. I could answer the phone in the comfort of my home and often solve the problem right then and there. If I determined that the child needed to be seen, I’d arrange to meet the mother or parent and child in the hospital emergency room, which was a twenty minute drive for me.

The winter in Maine is the time for colds, coughs, ear infections, strep throat and the dreaded croup.Croup affects young children far worse than it affects big children and adults, for the simple reason that small children have smaller, narrower airways than their older siblings and parents. Croup is usually a side effect of a cold. It is inflammation that settles in the throat, and in the case of young children it causes swelling and narrowing of the child’s airway. When it’s bad, the results are noticeable. The child struggles to draw in a breath and expel it,and it’s often accompanied by a crowing sound with each breath. You can imagine the effect it has on a young child’s parents, especially if it’s their firstchild. Panic often sets in.

When my cell phone rang and I answered it to hear a frantic parent, voice raised well above the normal decibel level, begging me to do something to save their child, my first words were, “Take a deep breath and tell me what’s going on.” That, together with my own calm voice, usually brought the panic level down a notch, maybe more. The conversation usually went something like this:

“My little Andy can’t breathe! He’s gasping and making horrible sounds with each breath!”

It sounds bad to the parent, but to me it meant Little Andy was holding his own, though he wasn’t having any fun at the time.

“It sounds like he has a touch of the croup, Mrs. Andy,” I’d begin.

“A touch of the croup! It sounds like he’s dying!”

“He’s going to be all right, Mrs. Andy. Here’s what I want you to do, okay? Go in the bathroom and turn on the shower, and when the water’s warm, have Andy stand under the shower stream and take long, slow breaths. Have him do it for a good ten minutes, and let’s see how he’s doing after that. Call me back when you’re done, and tell me how he is, okay?”

“Okay! Come on, Andy. Doctor Charlie wants you to take a shower!” Then she hung up.

I would stand by the phone and keep track of the time. If Mrs. Andy didn’t call back in ten minutes, I could be pretty sure that the simple treatment had worked. Past ten minutes, I usually got a call back from a much calmer Mrs. Andy saying that Andy was much better, thank you very much. The simple treatment of cool, moist air being breathed in almost always reversed the crowing sound and strained breathing.

Unfortunately for me, it didn’t always work out. One of the main reasons was because Mrs. Andy didn’t give Andy enough time in the shower, her own panic causing her to shorten Little Andy’s shower time and call me back with the news that it hadn’t worked and he wasn’t any better.

At times like those, action always spoke louder than words, although I could predict with 99 percent accuracy that Little Andy was going to be fine. As I said earlier, it’s important to treat the parents as well as the real patients.

“I’ll meet you and Little Andy at the Emergency Room of the hospital, Mrs. Andy. Bundle him up and head on over. It takes me twenty minutes to get there, so if you beat me there, I’ll be right along, okay?”

“Okay, Doctor Charlie. Thank you!”

I’d throw on my coat and hatand pull on my gloves, and drive to the hospital. The car was icy cold, so I’dturn on the heater to take off the chill. I’d drive into the hospital parking lot and park, then walk to the Emergency Room. If Mrs. and Little Andy were there already, I’d eyeball Andy while greeting Mrs. Andy. “How are you feeling, Champ?” I’d ask him.

“I’m feeling good, Doctor Charlie. I think the shower worked,” he’d tell me, no sign of difficulty breathing as hespoke. He was alert and his skin color was normal.

Reassured, I’d turn to checkout Mrs. Andy. She, too, was calm and under control once more, a smile sealing the deal.

I would go through the motions of examining Little Andy to make sure there wasn’t something else going on. I’d look in his ears, look in his mouth and have him say ‘aaah!’, and feel his neck for enlarged lymph nodes. Then I’d listen with my stethoscope to his breathing and his heart. In most cases, it would be a nasty cold that triggered the croup.

When I’d finished, I’dtell  Mrs. Andy that he was going to be fine, and maybe prescribe some simple anti-inflammatory medication for him to take.

Then it was Mrs. Andy’s turn.“I don’t understand how he made such a dramatic recovery. He seemed so, so seriously sick to me.”

My turn.

“You did everything right, Mrs. Andy. His time in the shower may have been a little short, but when youtook him outside into this freezing cold night, the icy air did the rest. It cooled down his irritated throat and helped open his airway.”

“Just like that?”

“Just like that.”

“Thank you so much, Doctor Charlie. You’ve taught me so much tonight.”

“That’s what I’m here for, Mrs. Andy. I hope you and Little Andy have a good night.”

Working with young children taught me the importance of the combination of treatment and education. They go hand in hand.

—o—

 

 

Charles M. Dupoy has traveled the world, seen Africa as a Peace Corp volunteer, been a saleman and a farmer, and a magazine writer and editor, and an EMT. later he studied for and became a physician assistant which took him from pediatrics to geriatrics, and from Maine to the Santa Fe, New Mexico penitentiary where he worked in the maximum security unit. Retired now, he draws on his lifetime experiences while writing suspense novels. His first published novel, EASY KILL, is the first in the series, featuring his kick ass heroine, E.Z.Kelly. The second in the series is due for release in the Spring.

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.

 

About The Med Bag

 

A relationship like no other

The relationship I have with my medical provider is unique as it is based almost entirely on trust. I tell him/her the most intimate details of my life–that I don’t reveal even to my closest family members or significant other. He/she is not just my health care provider but also my confidant in some ways. But lately I’ve noticed a growing distance. I can no longer call and directly talk to my doctor. I have to leave a message. Nor can I always see him/her when I have a concern. I have to make do with a substitute. Then when I’m really sick and need to go to the hospital I see another bunch of strangers. I’m told my doctor is too busy to come to see me.

Yes, it’s true. The practice of medicine is changing. We providers are no longer able to provide exclusive care to their patients. Often, we have to delegate to others as we are placed under constant pressure to squeeze one more patient into that fifteen-minute window and waste time entering irrelevant information into the EMR (electronic medical record) and filling forms and paperwork. We begin to appear aloof, inattentive, sometimes even uninterested and dismissive when clearly we are not. Our patients feel they are another file in the cabinet rather than a thinking, feeling human being.

I started my career in primary care then changed my mind and moved to hospital-based medicine. I made the transition, so I can spend as much time as I need to with every one of my patients without restrictions. Of course, this comes with increased stress levels because I’m taking care of really sick individuals, but compromises have to be made. The hospital environment is different. People come, get better and leave. Though some keep coming back. Often because they are sick but sometimes due to other less well-understood reasons.

Over the years I’ve had some extraordinary encounters and met extraordinary people endowed with tremendous grit, endurance and courage. Some of them are etched in my mind; they’ve moved me, humbled me, exposed me to my vulnerability and changed me permanently; hopefully for the better.

The purpose of this website is to bring forth the human aspect of medicine that seems to be have got lost in this fast-paced world. We want to share insights and experiences from both sides of the aisle. Many of these are deeply personal and the authors are being very courageous by opening a part of their lives to the world. Now and then, my colleagues and I will also elaborate on some topics on health and medicine.

Sincerely,

Dr. Simi K. Rao (creator of The Med Bag) and The Med Bag Family.

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