Lost in the Wilderness of the Body

I haven’t written anything for Being Fully Human for some time. I have been on an odyssey, a continuing journey, through the inner reaches of the body and the outer halls of academic medicine. You see, I have been lost in the wilderness of the body.

I was diagnosed with nevoid melanoma last year. Nevoid means mole-like, similar to the common nevus (mole). It did not look like a typical melanoma with irregular borders, asymmetry, or coloration. It looked like a regular mole. However, this was not a common mole, but a malignant cancer that had spread to two of the lymph nodes in my axilla (armpit), making it a Stage IIIa cancer.

My oncologist recommended adjuvant immunotherapy to prevent any recurrence. Immunotherapy is a relatively new treatment for cancer over the past decade or so. Nivolumab is a monoclonal antibody (-mab) that “switches on” the body’s own immune system in a way that over-rides the immune-blocking properties of cancer. The risk, however, is that one’s activated immune system can turn against the self, causing various autoimmune conditions anywhere in the body.

Numbers mean Everything & Numbers mean Nothing

The decision to start this medication was difficult for me. With roughly a 10% chance of potentially permanent side effects, this is a serious medicine. The decision was even more challenging because I was considered “cancer-free,” nothing was visible on any of the scans or blood tests. However, my oncologist thought there was a 10-20% chance that I could have a recurrence of melanoma without treatment.

The decision involved flailing back and forth between the numbers about recurrence and the numbers about serious side effects. I was intellectually trying to make the “right” decision. In oncology, treatment protocols are all about numbers – numbers are everything. For me, however, an individual, not a population statistic, I realized that numbers could also mean nothing. No matter what the statistics, what happened to me would happen to me. When my oncologist said that he thought my risk of recurrence might be closer to 20% and immunotherapy could cut that risk in half, I decided to go on the year-long course of monthly IV infusions.

Still in Training

When I first was diagnosed with melanoma, my friend, co-author, and teacher, Joseph Rael (Beautiful Painted Arrow) asked me why I thought I had gotten cancer. I sputtered out a couple of things and he interrupted and simply said, “Because you are still in training.”

This attitude could actually apply to all of life. When anything goes the way we don’t want it to, we could say, well, this is a good training exercise – what can I learn from it, how can I grow? To approach life as a student, rather than a victim, is the road less traveled, the pathway of transformation.

The first infusion of Nivolumab was uneventful. I felt a little tired after, but nothing dramatic. However, about two weeks later my right foot hurt every time I took a step. This lasted about three days and then the pain resolved but I had tingling paresthesia of neuropathy. When I told my oncologist, he said somewhat incredulously and dismissively that this medication had a less than one percent chance of causing neuropathy, other medications could cause it more commonly. He seemed suspicious of my symptom and then referred me to another doctor, a neurologist. That appointment was three months out.

Two weeks after the third infusion the neuropathy symptoms intensified and began to move up my legs – tingling, electric jolts, burning sensations, aches, and cramping pains.

Like A Brush Fire

Over two weeks the neuropathy picked up speed, reaching my chest (which led to an emergency room visit to evaluate chest pressure and cramping that later seemed to be related to the spread of the neuropathy). I was alarmed at the rapidity of the upward spread – like a brush fire – and I began reviewing different kinds of rapidly ascending neuropathies.

During my neurology rotation in my medical education I had met an unconscious neurologist who had developed Guillain-Barré that paralyzed his breathing muscles and he was on a ventilator. This was one of my concerns given that rapid spread and for a time it seemed like the neuropathy might also be involving my heart. I underwent another series of tests: brain and spinal MRI, chest CT, EMG, autonomic testing, nerve biopsy and lab test after lab test.

Drowing in Quicksand

I felt like my team was always a couple steps behind the rapidly evolving symptoms and that they lacked imagination to think beyond reductionistic symptoms to encompass the overall pattern of what was happening. The image came to me of sinking in quick sand and the medical team watching me from the solid ground, telling me they wouldn’t toss me the life preserver until they determined what kind of sand I was drowning in. I imagined them requesting a geology consult that would take three months to arrive and then the geologist would send samples of the sand to the lab for analysis while I slowly drowned right in front of them. It was a strange and unsettling feeling of being seen and not being seen, as if they were more interested in the composition of the sand than they were in my own life and well-being.

Eventually they started Prednisone to shut off the immune activation. This was a high dose of steroids, up to 100 mg and then a slow taper down. It pushed the neuropathy symptoms mostly back down below my waist, but I was still having active symptoms in my lower body. During the taper, at about 60 mg the symptoms began spreading into my chest again, but at a slower speed. At around 20 mg the neuropathy symptoms moved into my neck, face, forehead and scalp.

Now, off prednisone, I continue to have head-to-toe neuropathy symptoms. I have continuous aches and cramps in my limbs – from shoulder to hands and hips to feet. We still don’t have a definitive diagnosis for the neuropathy, although the neurologists suspect small fiber neuropathy. The results of the nerve biopsy, which may confirm the diagnosis, are still pending after six weeks.

In addition to the paresthesia, tingling, burning, aching, cramping symptoms, I also developed a heavy feeling in my legs, difficulty standing straight (but walking ok), leg tremor, low back pain, and balance problems. After describing my unsteadiness to two oncologists and three neurologists, a practical ER resident suggested I get a cane so I didn’t fall. That was quite helpful if I had to stand for a while when I was out walking or going to the clinic for an appointment, I could use the cane as a prop or kickstand to steady my legs. This obvious recommendation was overlooked in the mania of medical/technological medicine.

Despite my detailed descriptions, and even the doctors own objective findings on physical exam, I haven’t felt that any of the doctors have adequately explained the balance symptoms and instead have focused on trying to determine what kind of neuropathy I have.

I’ve been off work for two and a half months and just returned to work part-time this week. I still have head-to-toe neuropathy symptoms. I don’t have to use a cane for short walks, or prop myself up with the counter if cooking or doing dishes. I do still feel off-balance and use my hands to steady myself as I walk through the house, as if I was on a ship rolling at sea.

Modern-Day Alchemy

If I seem embittered toward the medical system – I am. I have had some very compassionate nurses, and a couple physicians who were not part of my immediate specialty care team. My primary care doctor is great, but I’ve been lost in the wilderness of medical specialties, medical technology and evaluations, and twice been to the emergency department. On the one hand, medical technology surgically removed the cancer and identified the two metastatic lymph nodes, and as far as we can tell, removed all visible signs of the cancer. On the other hand, I can’t help but think of immunotherapy as contemporary alchemy, with my young oncologist as a kind of modern-day alchemist, playing around with mercury and other arcane substances to try to create the philosopher’s stone that will be the panacea to cure all cancer.

Pharmakon: Poison & Cure

The ancient Greeks had a word for medicine – pharmakon. They also had a word for poison – pharmakon. These modern-day alchemists, in their zeal to cure, may be causing a whole panoply of iatrogenic diseases. The dual nature of pharmakon – a poison and a cure – should engender humility, caution, and a sense of awe at the mysterium tremendum et fascinans of life – the terrible yet fascinating mystery of health, life, illness, and death. The hubris of modern-day alchemy is that we reduce people to numbers and then we can plug those numbers into protocols, and we make the numbers go up or down. Doctors can lose a sense of personal responsibility and accountability because they are just “following orders” of the protocol. Health and illness are the great mysteries of life and we need to have a healthy appreciation of the mystery and uncertainty of life.

Please don’t mistake my personal narrative as medical advice. If I had advanced metastatic cancer, the trade-off of my ongoing symptoms for being cancer-free would be a different calculation. However, for me, I didn’t feel sick until I received the treatment to make me “healthy.” I’m not sure the trade-off, from a cost-benefit analysis was worth it.

Iatrogenic Soul Loss

I also feel like I have been hood-winked by contemporary medical, technological science again! When I was in medical school, I felt like I was losing an important part of my humanity as I grew in skill as a medical technician. I felt I was losing my soul and I developed the idea of a counter-curriculum of re-humanization – a kind of soul retrieval through meditation, reading, poetry, the arts, and creative practices. Now, as a patient, I feel another loss of my soul and humanity as I’ve been processed through the medical system. I’ve been continually frustrated as I’ve laid open my soul to these young doctors who are always attending to the demands of their computers. I’ve wondered if the problem is me – maybe I’m documenting in too much detail, or recounting too many symptoms. I’ve spent hours editing down my updates, trying to capture the complexity and evolution of my symptoms while simplifying it so that the briskly busy, multi-tasking young physicians can take in the information I am providing. Our medical system has no problem spending hundreds of thousands of dollars on pharmaceuticals and technology, but it is almost impossible to have a doctor sit down, person to person, and spend the time needed to understand what the patient is going through, let alone properly understand a complex system pattern.

I got excited about the new science and technology of immunotherapy for cancer treatment. I got caught up in the medical dream of curing cancer. But personally, I’m living out the dark side of pharmakon – feeling like I was a perfectly healthy human being (other than the surgically-removed melanoma) who now has a potentially permanent disability, that is still evolving, from the pharmaceutical tha was supposed to make me more healthy.

iatrogenic (adj.)
“induced by a physician,” 1920, from iatro- + -genic.
word-forming element meaning “a physician; medicine; healing,” from Greek iatros “healer, physician” (see -iatric)
word-forming element meaning “producing, pertaining to generation;” see -gen + -ic

The Greek word for physician or healer is iatros. The Greek word for soul is psyche. As a psychiatrist – or psyche-iatros – I’ve viewed my calling and role as reminding medical professionals that we should be striving for a balance of our roles as technicians and our roles as healers. As we seek to modulate the inner workings of the body with technology, we should balance this with the role of the healer who works with our psyches – our souls – as well as with our bodies.

To treat the body without the psyche or the psyche without the mind is to be at least partially insane. Human reality is psyche-soma, mind-body. To ignore this holism is to ignore and blind ourselves to half of reality, which means we are voluntarily insane – if by insane we mean someone who ignores or is unaware of reality.

Lost in the Wilderness of the Body

I’ve been lost in the wilderness of the body – but to say it this way is really not quite true. This illness experience has shown me that my psyche and soma, my mind and body are one. I have been exploring the inner reaches of the territories of my being. This is not looking at the body from outside, trying to manipulate it into health, but rather exploring a vast wilderness of the unknown within myself. What we do not know at first appears dark until we bring the illumination of consciousness into that dark realm.

Rather than wail and gnash my teeth or rail at the contemporary medical technology system, I try to remember the words of Beautiful Painted Arrow, “You are still in training.” Then I ask myself, “What can I learn here, in this dark wilderness of the body, what treasures might lurk in the abyss, what vistas might be found over that mountain ridge?” Rather than trying to negate or eliminate sickness, or try to run out of this wilderness back into the light of the remembered memory of who I used to be in some sunny meadow outside of this dark wood, I will go deeper into the unknown realms of the body.

We need to explore ourselves, our inner natures as well as our outer natures. We need what Nietzsche called the great health:

…a new health that is stronger, craftier, tougher, bolder, and more cheerful than any previous health. Anyone whose soul thirsts to experience the whole range of previous values and aspirations, to sail around all the coasts of this ‘inland sea’ (Mittelmeer) of ideals, anyone who wants to know from the adventures of his own experience how it feels to be the discoverer or conqueror of an ideal, or to be an artist, a saint, a lawmaker, a sage, a pious man, a soothsayer, an old-style divine loner – any such person needs one thing above all – the great health, a health that one doesn’t only have, but also acquires continually and must acquire because one gives it up again and again, and must give it up!. . .And now, after being on our way in this manner for a long time, we argonauts of the ideal – braver, perhaps, than is prudent and often suffering shipwreck and damage but, to repeat, healthier than one would like to admit, dangerously healthy; ever again healthy – it seems to us as if, in reward, we face an as yet undiscovered land the boundaries of which no one has yet surveyed, beyond all the lands and corners of the ideal heretofore, a world so over-rich in what is beautiful, strange, questionable, terrible, and divine that our curiosity and our thirst to possess it have veered beyond control – alas, so that nothing will sate us anymore![1]

[1] Nietzsche, Friedrich. Nietzsche: The Gay Science: With a Prelude in German Rhymes and an Appendix of Songs (Cambridge Texts in the History of Philosophy) (pp. 246-247). Cambridge University Press. Kindle Edition.