There’s a hole in my neck. It’s healing. I’m fine, but I’ve been needing to write about this matter for some time. Tonight’s the night. There’s enough distance between me and the event… so…..
In the beginning there was a mole. On my neck, right behind my right ear grew a suspicious mole. It was small. It continued to grow. Irregular, undefined edges, a steady stream of people taking notice over a number of years: “Hey, what’s that?” “Have you had that looked at?” “Oh, I thought that was a tatoo for a second.” etc, etc. I had it biopsied three years ago and nothing. They didn’t cut it out mind you – they took a little sliver out with a knife. I never heard back about the results. I never checked on it. Flash forward to this summer. I saw a physician for the first time in over a year and just briefly discussing it we both agreed it should be removed. Feeling positive about the entire matter I saw a dermatologist about a month ago. She takes one look at the mole and we decide together to take it out – right then. Another instance of unified agreement between doctor and patient – success. She and her nurse laid me on the table and she cut the mole out and stitched me up. The entire procedure took no more than 20 mins and done. The cut was clean, the stitches looked good, minimal swelling and little pain/discomfort. The skin felt a bit tight for a week. I remember walking out of the hospital feeling relieved and content that I made a good decision – done deed.
Now, this is where things start turning. I get a phone call from the doctor (nurse practitioner) about a week later informing me that the mole they cut out of me was in fact melanoma – the worst and most deadly type of skin cancer. I grant that she did her best (mildly unskillful) to navigate the sensitivity of the issue and impress on me the importance of having another procedure to do what’s called a secondary or wide excision taking out a larger margin around the melanoma site. I immediately found myself critical of the idea. I told her that sounded excessive. She let me know that she had indeed cleared the margins of the mole by 1mm and that she was 99% certain she got it all. But, she insisted, because of the seriousness of the cancer it was standard best practice to cut a wider margin. She continued informing me that evidence based research concluded that after secondary excision the chances of successful removal, with non-recurrence increased to 96%. Yes, Yes. I understood. She told me that she had gone ahead and scheduled the procedure for me. Ok. Wow. When I got off the phone I found myself feeling violated and a bit angry. The way our conversation went it was like I was supposed to feel scared, blindly accepting her recommendation and the further skin removal. Whose body? It was like an entire new spirit of fear had started to inform and direct the negotiation of my body. Fear, and this is what upset me: after I said that it sounded excessive the doctor’s reaction was to tell me that the melanoma could end up in my brain! It was almost laughable. Yeah, I get it. Melanoma has ended up in people’s brains – that’s a possibility – but REALLY? That’s what your going with? It will eat my brains? It was like talking to a child wanting her way and she started telling me these horrendous tells of death that could happen unless I agreed to another surgery. I understood that the mole was bad and it needed to be removed and it was, successfully. The difficulty I was feeling was the cognitive dissonance between what she was saying and my…intuition is it? Or perhaps the experience of the first procedure flowing so smoothy or…what was it exactly that was off about this?
The first procedure flowed, each part’s (doctor/patient) input and interactions solid, confident, and professional. But I immediately found this notion that they “didn’t get it all” or “we can achieve a better ‘margin’ of certainty” to be bound up in fear rather than “best practice,” hubris rather than care, and further, a proprietary notion of certainty. If you (the doctor) and I (the patient) agree to a 99% probability that the first surgery was successful then upon what basis are we discussing another? The basis, “best practices, evidence based medical research,” I understand as absolutely valid when taken as a general rule. But its the political economy that constitutes the general rule that disturbs me, and the underlying assumptions about the unquestioned authority of institutional medicine. These ‘general’ practices are put into place after an increasing number of first surgeries failed at preventing melanoma recurrence. The ‘general practice’ further protect the margins of error, the prevention of law suits, security of continued dependence model of medicine, and victim centered patients, the standardized practices are thought to be beyond doubt – authoritative, even lawful – doctors cut twice when they find melanoma. And this is where the contemporary standard of care fails – right as it approaches the power of certainty. Indeed, here we have highlighted the plight of all modernity. For failing to understand the power of the individuals autonomy in treatment, for failing to have a clear diagnosis of my body as a psycho/somatic phenomenon and instead interpreting my body as a mechanism, ripped from every context except the measurable physicality, the separation of mind/body, subject/object, patient/doctor. I would even submit I could have lived the remainder of my life with the mole, never dying from melanoma. An accurate diagnosis would have understood the connections between my brief history of addiction/depression and the growth of the mole. They would have correctly understood the cancer to have corresponded with the toxic growth of my dependency issues and would have understood that the power of my recovery, the turning of my spirit into light, not to mention my age, skin tone, general health practices, positive attitude, social value (light) made the possibility of recurrence almost zero after the first cut.
So…I was angry (fearful) at the notion of getting a second surgery, but here’s another matter: I resisted in only in thought to having the second procedure – all the critiques went only as far as thought… because once I told even the first person of my circumstance and the doctor’s recommendation EVERYONE told me to have the surgery done. EVERYONE. Oh the power! Please remind me to bow before the safety of my community. My most wise council instructed me to be grateful for medical science. I followed the course of anger and resentment only briefly (ok, maybe I’m still as sore as my god-awful scar!) but I got the surgery done. The scar is horrendous, but healing. BUT, the notion that I’ll forget about it, as people suggested, will not be my course. BECAUSE, even though I can access gratitude for medical science, the power of healing, the amazing restorative powers of skin itself, the true care and expertise of the my doctor (who I very much like btw) the critique is still valid and so are my feelings. My circumstance only highlights the problem in a minor, obtuse way: The current medical model is built upon the power of research. But even more fundamentally authoritative is the unconscious cultural myth of progress founded upon the power of science and certainty. It’s such a powerful myth that no one sees it operating, secretly acting upon our very bodies. The power of the Christian mythos – eternal life through salvation – is desperately trying to be realized through science. Donna Haraway at UC Santa Cruz first clued me into this mythical motivation – a secular-Christian motivation attempting salvation through better science. Our bodies – now my body – is a marker of an age of medical science not-yet having arrived at its destination and mutating bodies along the way. YAY! See the book: The Spirit Catches You and You Fall Down for a cultural critique and just a fantastic read about other limits contemporary medicine is meeting in a global context.
So just a few more remarks about my experience here and I’ll be done:
There was a really interesting moment during my first interaction with the doctor. Right before her first cut she said something that raised a curious red flag. She was talking about the aesthetics of the scar and she said she wanted it to look good because, “It will be my signature.” I think if one were to see into my mind they would have seen me do a double-take. Did she just say… I repeated the phrase back to her to make sure I had heard her correct and to give myself a second to digest the notion. Her… ‘signature?’ like a piece of art? Or like, she owns it? Ok. “Yeah, I guess she’s about the cut the shit out of me,” I thought or said… I can’t remember. I do remember joking about how archaic the entire surgery would seem to our future selfs – the future of medicine: “Yeah, they would actually cut out the skin and use stitches – like piece of cloth! Isn’t that unbelievable!”
Another interesting moment was when the second doctor came in to perform the second surgery. At first she petted my head. It was both comforting and infantilizing/disturbing at the same time. The subtle gestures of power dynamics in the room between myself and the two female doctors. “Is she petting me? Yes.” I thanked her for this actually. She had traced a huge section of skin to be removed around the original site with a sharpie. OK. I did like how I was able to be a more active participant in the procedure and even marking out where the cut would be. I think this is reflective of gender as well. Working with two competent medical doctors who happened to be women was significant because I believe their perception and capacity as women offers a space that welcomes more participation. We went back and forth for a few about which type of cut to make and where exactly the cut should be… “Where was the mole again?!” My thoughts: “Holy shit, man… or woman.” She let me watch the surgery with a mirror which I found extremely engaging. I even took a few selfies and a brief recording of the surgery.
I was reflecting about this the other night after a long gaze of discontent over my healing scar. After my first surgery I came home confident. I was pleased and felt good about the entire matter. When I came home after the second surgery. I was an emotional basket-case. That night – alone in my room I wept so violently my wound oozed and bled bad. I was so deeply disturbed and upset. I’m still upset about it.
I remember being on a bus in San Francisco and there was a black woman setting across from me with a whole in her neck. It was from smoking. She had a band-aid over it that had fallen off so that the whole was exposed. She was panicked, out of mind, dirty, poor. I found a bandaid in my bag and put it on for her, covering her neck whole. She gave me a NY hoodie for my act of kindness… and thanked me over and over in front of a crowd of astonished onlookers.
I don’t know why I’m not that bad off. She… was in a bad way. I’m not dead. I don’t have cancer. I used to fight so many things. I’m learning not to fight. I’m learning to surrender, to practice acceptance, trust. And surrender is power… Surrender, even in the wrong – when I’m wronged. Perhaps, I was right and the doctors wrong. So what? What gifts do I bare so proudly that I earned? What price have I paid for the privilege to exist, to have access to health care, to have a father who drives me to the doctor? This woman on the bus had no one. I was her best gift and I was off the bus a few stops later. So there it is…
I’m still human.