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Unlikely serenity

"The greatest wealth is contentment with a little."
-Unknown

I did not want to go to work today. More than usual, I did not want to go to work today. I had been up late doing paperwork, asleep as soon as horizontal, then awake again, barely, in about 3 seconds, a warm cat under my arm, the alarm on my cell phone reading 5:06am, dreading the day. On her way to work, my wife dropped me off at the office. Lately, I just haven't been able to make myself get on the bike. My routine is, I first go look at my route for the day, scheduled the previous afternoon by office administrators. Then I grab my charts, all 40-80lbs of them, and head off to a quiet conference room to meditate for 10 or 15 minutes. This morning, staying awake as I breathed in and out with the aim of emptying my head was a challenge. I use a technique that I learned in a Shambhala meditation center, keeping my eyes open, focusing on a spot a few feet in front of me, concentrating on the breath. All I wanted to do was put my head down on the table and drift off. If I can stop the chatter in my brain for three breaths in a row, that's a huge success. When I'm through, I start making my way through the charts, filling out what I can before the day begins, reviewing what happened during the last visit, anticipating the next. Today, among 13 others, I would be seeing John Mayberry. John is a tough case.

John has been in bed for years. After a car accident left him paraplegic, he has spent nearly all of his time in a room the size of a walk in closet. The room is in what was probably once a storage space in the basement of an Englewood 3-flat.. There are no windows. The air is close. Only one person at a time can be in there with him. His bed takes up about 80% of the space. There is a small shelving unit at his feet with a 12" TV atop. His toes fall outward. He lies there in his underwear and a half buttoned shirt, with an ashtray somewhere within reach. A short, twisting corridor leads to a kitchen even smaller than the bedroom that barely holds a table and two chairs. Whenever I visit, either his daughter or his son wait for me by the stove as I talk to John about how he is doing. Today, I notice that urine collection bag has a little blood in it. The visiting nurse who comes once a week had just changed his catheter so the blood isn't terribly surprising and will probably clear up in another day or two. I look at his left knee which we have X rayed here in his room since the last visit. It is less swollen and not painful, though he says that a spot on the leg below the knee has been bothering him a bit, but only when he has to turn to be washed, or to have bedclothes changed. The X ray showed only arthritis, but I had also shot films of his lumbar spine, and these bones had a ragged appearance. Though it has never been demonstrated definitively, I am sure that John has metastatic prostate cancer. His PSA, the chemical produced in quantity by cancer cells, is sky-high. Years ago, when the elevated PSA was first noticed, he had not one but two biopsies but both had been negative. Over the last six months, the flesh has melted off of him. He is visibly weaker, has developed an early bedsore over his hip, and now this bone pain. Without a positive biopsy, I have been unable to get urology to start treatment for the cancer, though this treatment would have been temporizing at best. John is dying of a cruel disease. However, given a touch of dementia, his mind is not able to hold onto this reality. And despite this heavy, very limited existence, his outlook is surprising.

John is seemingly one of the most content patients I work with. Whenever asked, he always feels fine. He smiles and says he is happy, he has no interest in moving anywhere else. Even when I paint too rosy a picture of a supportive care facility where he could socialize with other residents and tool around in a powerchair. coming and going as he pleased, he claims to have no interest in being anywhere else. He enjoys the meals his family makes him and he likes watching TV. In all the time I have been coming, I have never seen him angry or despondent or scared. In fact, the time I think he seemed most unhappy was when I visited him in the hospital, in a room much cleaner, brighter, airier, and larger than the one to which he is accustomed. In a way, he strikes me as an creature who has grown used to his tiny cage. "Institutionalized" is the word coined in the Shawshank Redemption for people who have become dependent upon their prison cells. I want to take him away from this place and see him living in a building with nurses, bathrooms, showers, where he could peer out his window and see birds. But is this fair? John has taken the situation given him and made peace with it. According to his children, even before his injury, and long before he moved underground, he was content; his outlook uncomplicated. And yet, finding him accepting of a situation that I find unimaginable, I want to believe him damaged. I find it far more believable that in telling me he prefers this place, he is actually expressing his fear of the unknown. Perhaps in this alternative environment that I offer him, his children will never come visit. It will be clean and the walls will lie more than three feet away, but no one will listen to him. They will tell him what he wants rather than asking. Behind his smile, he is terrified. This is what makes the most sense to me. And if I could take you to this place that he lives, maybe this would be what makes sense to you. And if I am wrong, and he is content rather than paralyzed by the thought of change, is there anything that I can learn from him? Or is this just the way he is and has always been, while I am how I am and have always been and will ever be?

Rickets?

My job brings me into a lot of strange houses. This one has to be one of the strangest. What I knew going in was that the patient was self-pay, that is he did not have Medicare, the only form of insurance that The Company accepts. And he was having trouble coming up with enough of a cash payment to make the administrators think it was worth their while to send a physician out. Glancing at his chart, I saw that the patient had what the doctor who saw him before me termed "familial rickets." That is, two of his daughters have rickets as well.

You don't hear too much about rickets anymore. In fact the word itself seems antique. It comes from an Old English word 'wrickken,' meaning to twist because the legs of those with rickets bow inward. Their bones are soft and prone to fractures and their teeth fail to mineralize properly. The most common form of the disease is due to a lack of the active form of vitamin D, either because of deficiencies in the diet or lack of sunlight or both; for a while it was quite common but now we have all but eradicated in this country. But there is another form of the disease that is very rare and inherited. The mutation causing the disease resides on the X chromosome, meaning that fathers give it to their daughters. I reviewed all of this during a lit search on my iPhone as we drove out to see our patient.

There was no heavy ornately barred security door found on most of the nearby homes. In fact there was no storm door at all. There was no doorbell. When we knocked, a boy of about 11 with a challenging expression and no shirt answered. We asked for Henry and he led us through a dingy, sparsely furnished living room, past another slightly older shirtless boy, and into a back bedroom. Our patient was a man of 46, obese, short in stature, with bowed legs, also shirtless, lying on a dirty mattress. He invited us in.

Self pay patients are unusual. And because no one from The Company had visited him in over a year, I figured he had a specific reason for wanting to see us, so I asked him straight out. He gave a direct answer. He was due in court on Monday for a child support hearing and needed a physician's note stating that he was bed-bound and unable to attend. Apparently, as he had grown heavier, he developed back pain, and now in addition to being unable to walk he could no longer tolerate sitting except for short periods. He had not even tried to sit up for the last 8 months. Despite this, he was a fairly cheerful fellow, well-spoken, happily conversant. He seemed to understand how bizarre all of this was. When a third shirtless boy came in asking to use the computer, he breezily said not now, Darnell. The kid kept at it so Henry put an end to the pleading with: "Leave! Goodbye." though his the tone of his dismissal was somehow affectionate, familiar. I almost cracked up.

In order to examine Henry's back, my medical assistant and I had to physically roll him onto his side, not an easy task for a man shaped like a Weeble. Henry walked us through it, so to speak. Apparently, whenever he needs to leave the bed, which isn't often, he calls a couple of larger sons to help pick him up. I had some stationary with me and wrote him a letter on the spot. I could easily testify to his rather lump-like status, and I felt for him. But what I wanted to ask, but avoided doing because we had just met, is what's with all these kids? He has eight! This man who had been on SSI for over 30 years, who had never walked, who was poor as a church mouse, just kept on making babies. And most disturbing, not one but two of his daughters inherited his crippling disease, an outcome that should have been entirely predictable. I can believe that he was never properly educated about his disease. I can even buy this despite the fact that his sister, who also has rickets, passed the disease on to one of her sons. But what I find nearly impossible to fathom is that he never considered slowing down on the baby-making after his first daughter developed the same crippling condition. And while not all of his children live with him, as demonstrated by the child-support suit, both of his daughters do live in his small house. I would imagine this is a way to consolidate SSI checks, about $650/month each, to the point that they can support a household.

Despite what I may think of his choices, the man needed better medical care than he was getting. At this point, though there is probably not a lot to be done about his major diagnosis, he also had untreated hypertension. And if I could help apply for Medicare, which he should be eligible for, we could probably get him a bed with a trapeze set-up that allows him to sit up, along with physical therapy that may help address his back pain. Until we can put all of this in place, I told him that I would come back for free in about a month to check on his blood pressure and see how he was doing.

Diabetics give the best presents

One of the real perks of my job: the rare gift of food. Quite often, diabetics are diabetic for a reason. It's because the stuff they eat is sooooo gooooood! My second to the last patient of the day kept us a bit late but it was well worth our time. A pound cake was just coming out of the oven. She had made it for us, Rose and me, and sent us away with four huge hunks each. It is a little disturbing how naturally our conversation about  techniques for insulin titration was so easily interrupted by mouthfuls of heaven. Hypocrisy? Maybe...

Soc

Someone from AA asked me to help teach his class. More specifically, he asked me to lead a session of his intro to sociology class devoted to health care. He is trying to get his kids to consider societies various institutions from a perspective of inequality. Health care and inequality is big topic and he has given me a lot of latitude in what to present. But as interested as I am in how inequality manifests itself in health care and how health care succeeds or fails in addressing these, I find that I am far more interested in considering the broader question: what is health care? Is it really an institution? What is health? What is a health care provider? With respect to our bodies, aren't we all health care providers? This is a bit slippery, I guess. But perhaps the class and I will get at how, as an institution, health care is different than, say, the auto industry, or the restaurant industry. In a sense, even if we don't go to a clinic or a hospital, or buy vitamins or medications, we all engage in health care. The final outcome isn't a car or a meal, it's us; how long and how well we live. In the end, whether we are paid or unpaid practitioners, that's what we are engaged in: trying to help each other live better and longer.

One of the incredibly illuminating and often frustrating aspects of working in health care is encountering differing belief systems around health. They teach you about this in medical school, and most students were probably something like me, shrugging the topic off and preferring to focus on what I considered to be the meat of medicine: physiology, pharmacology, immunology, etc, etc. And I was, and still am, a pretty progressive, open-minded and patient guy--I like to think. And also a vegetarian, so maybe my meat analogy isn't terribly apt. Anyway, a problem arises when the person across from the table has vastly different tastes, if you will. There are plenty of people out there who do not believe in physiology and pharmacology and immunology. They don't know what they are, and possessing a worldview that works perfectly well for them, have little interest in learning about or working within a system that requires them to accept a mysterious and foreign set of principles. Obviously, this doesn't apply to everyone. Some people, like the perfect little patients on Gray's Anatomy are only to happy to put their full faith in every word that issues forth from MD's mouth. But there are plenty that do not, and there are those that say they do when treatment strategies are discussed, but when the doctor is gone, go and do their own thing. And then there are those who are half in and half out. One of my favorite examples of this is my patient, Martin. I have been seeing Martin for osteoarthritis and chronic pain related to a horrendous injury he suffered years ago, along with hypertension, and a positive TB test that required prophylactic antibiotics. It was very difficult to get him to take medication for the blood pressure though he readily accepted pain medication. Pain is right there in his face and it is clear to him that certain medications do a good job at helping with that. Blood pressure is something else entirely. When we first started working together, we didn't talk a lot about what he thought. I prescribed, he accepted. How often he took the medicine is uncertain. Sometimes his blood pressure was great and other times it wasn't. Finally, wondering if and when he was actually taking it, I asked him: do you believe in high blood pressure? "Yeah, doc. I believe in it?" I asked him why he believed in it. He answered because his mom had it and she had heart problems. So then comes the money question: do you think that you have it? "No. Not really." Why? "Because I feel normal. I don't feel like there is anything wrong." We had been over the whole silent killer thing before, and I think in his particular case, the obstacle is as much denial as it is an alternate belief system. Medicine is wonderful that way. Not only are many people predisposed not to believe in things like cancer you can't see and blockages in vessel deep within their bodies, they don't want to believe in that stuff either. There are plenty of times, like when I am sitting down to dinner, that I don't either. Though I have no real proof either way, I suspect that Martin took the anti-hypertensives and antibiotics (I hope) in order to placate the doctor so he could continue to get the pain medications. Clinical relationships are often about compromise. A more interesting and controversial question would be: "If you don't think that you have high blood pressure, what do you think we are doing when we take those readings off the dial and write them down? Are we screwing up the measurement? Or is it all just a scam designed to make us and the drug companies money?" I think I did ask him that once and he chuckled and deflected and moved onto another topic.

I remember a much sadder case of denial. I was asked to come visit the sister of a patient I had already been seeing for a few months. She stayed in a room just off of the living room, though no one had mentioned her to me and I was not even aware of her existence. Her name was Debra. As soon as I met her, it was plain to me that she was dying. The medical word for her appearance is cachexia. She was wasting away, not simply skinny but weak. Several months prior she had been walking around the house. Now was unable to stand, barely able to lift her torso off of the bed. The family had hired a caretaker, because she needed one, but did not look further into what might be causing such a rapid decline. A little questioning revealed that she had been diagnosed with lung cancer two years prior. According to Debra and her daughter, the specialists had cured the cancer and there was no need to go back. After a few phone calls and faxes to her oncologist, I learned that at the time of diagnosis, the cancer was already in her brain. They gave her radiation, but she did not like the way it made her feel so missed a lot of appointments, and ultimately decided not to return. The doctor may have said that he could no longer see the cancer on imaging studies, or perhaps he even used the word remission. They had grabbed onto this life raft and turned it into a cure. But now after nearly two years, after she had grown ,sicker and sicker, when I asked her daughter if she thought that the cancer might have come back, I received a steadfast "No." They had taken good care of her and provided her with a good diet. She no longer smoked. There were no negative influences in her life so there was no reason for the cancer to have returned. Cause and effect. Game and match. It's the big question that people in medicine are perhaps the most ill-equipped to answer: why? Not how. How is complicated and in times of crisis goes way past everyone; and to those in the grip of disease, often irrelevant. Why? Why me? Where in my life did I go wrong? What did I do to deserve this?

Karl

Dementia is an amazing and horrendous disease in what it takes and what it leaves behind. We saw my patient, Karl, today. He has what some would term "moderate" dementia. He remembers who I am, though not my name, and does not recall the last time I visited. He cannot manage his medications, and despite having been a realtor and insurance salesman, can no longer do simple arithmetic. However, he holds onto languages, and being an immigrant from Lithuania, speaks six of them (English, German, Polish, Lithuanian, along with some French and Italian). He lives upstairs from his brother and his brother's wife. His apartment is dim, colored in shades of brown, is like something out of film noir, where the private detective lives in the back room of his offices. The air feels about a hundred years old. He sits behind a large desk and I sit on the other side like a client asking advice. Behind him are piled books that he can no longer understand. Among them is a binder labeled "medical," into which he has meticulously placed pages from his clinical history. He remembers none of the them. Not his high blood pressure, nor the stent placed in one of the arteries of his heart. None of it ever happened. He has the worried expression of a child who neglected to study for a final exam. But Karl has studied. He is constantly taking notes. When I excused myself to go the bathroom, I found the mirror over the sink covered in reminders, little rectangles scribbled in a trembling hand: therapist comes Fridays 1pm; meals delivered Monday, Thursday 11am; don't forget the mail. There are notes on that mirror dating back to 2008, testifying to a desperate attempt to maintain order in his life, leaving no room to view his reflection. Karl never married. There was no one to outlive. If his apartment is any indication, he made a life in business, filled with clients and files, and a brother downstairs. He is kind, and gentle, and shyly affectionate, and frightened. On my second visit he gave me the note below:

It makes me wonder. Emotions are so highly reactionary, if my own are any indication. When I things are going well and I am confident, my needs are few, and I am in search of adventure. But when times are uncertain, when I feel small, then I reach out for those around me. I look for solace and crave validation and love. This side of Karl. This affection and neediness: was it always there? Or now that parts of him are disappearing and life grows ever more daunting, has this loving, necessitous person emerged, surprising to those who knew him before? I guess this sounds mean. It is a little mean. I like Karl. He is a sweet man. I enjoy him and wish I had more time to spend before his desk. Each time I come he asks me for a business card and before today, I always forgot to carry one. But today I dig one out of my pocket and hand it over. He is pleased. He takes a pen and writes on it the day and date: Thursday, 3/24/2011.

It was a good day. Got up early, biked to work, saw all of my scheduled patients, got done at a reasonable time, biked to yoga, then biked to an AA meeting that I chaired. Boo-yah! That's a good day. A full day. A day worth feeling pleased about, to be sure. However, if I choose to, I can completely eviscerate the experience of any sense of satisfaction. For instance: I don't really like my job and most days I don't even feel that I am particularly good at it. I could have done so much more for my patients today if I would only spend  more of my free time studying. So why am I wasting my time with yoga when I could be learning how to be a better doctor? And just think about all the time I have wasted being a drunk and a drug addict and now with all of this recovery business, think of how much more time I'll be wasting in meetings and step work that I could spend doing any number of things, and on, and on, and on. The M.O. of the perpetually dissatisfied. For a long time I equated dissatisfaction with possessing high standards. I thought that berating myself for the things I had not accomplished was the way to ensure that I did more. But even if that messed-up strategy had merit, I could never berate my way out of being an addict. So despite the heaps of whiny I direct at my addicted self, the reality is that is my reality. Without meetings, step work, the recovery community, service work, whatever serenity I have achieved quickly evaporates, addiction creeps back in, even material achievements vanish, and I am left unhappy and unhoused. Acceptance is the only reasonable course.