"I've lost some weight recently, but that's a fitness goal, not cachexia."

This is me, quite recently, explaining my current health to my primary oncologist, Head Warlock in Charge, who noticed my blood pressure and pulse are high. The inherently ludicrous nature of this whole scene is not lost upon me - we’re both in surgical masks and staying as far apart as the confines of a medical examination room will allow, and I know for a fact that the information he has on MyChart lists me as two inches (five centimeters) shorter than I actually am (I gave up trying to fix that years ago, after the fourth or fifth fruitless attempt — gods forbid an NBA player get cancer). I also know something HWiC doesn’t - that I have a hyper-responsive cardiovascular system (my BP once measured something like 190/130 after a receptionist told me my insurance had been declined, and I spent 20 minutes screaming at an insurance agent). Fortunately, HWiC is no fool, and was quick to note that a single high reading isn’t cause for immediate concern, but this incident sheds light upon what I think will become the medical ethics issue of our time: physician/biomedical knowledge vs patient knowledge and experience. Physicians have access to scans, ongoing studies, training, and brand new pharmaceuticals that aren’t widely available - most of the time, this is a good thing. Medical practitioners need to be aware that patients have lived in our bodies for most of our lives, and have networking resources that aren’t available to physicians - other patients (in my experience, chronic disease patients are willing to open up to each other in a way we won’t in a formal physician-patient interview). None of which is to say one group’s experience outweighs the others, merely that the challenge of 21st century medicine will be reconciling and integrating the two. And be wary of your own prejudices - I promise you they exist, and they don’t always look like arguing that the useless feeders should be euthanized, it probably looks like patients getting defensive and prickly about their own health and health choices (the flip side of this whole episode is that my pulse was 71, which is normal but high; however, for someone whose resting pulse is in the high 40s to low 50s as anyone who spends an hour a week on a stationary bike would be, that’s approaching tachycardia).

The best part of my disabled life is reviewing my medications, because that always shows the cracks and frayed edges in the ableism that otherwise unites society. I am on quite a few medications, as one would expect a survivor of a life-limiting illness to be. Here's a secret though; very few of my medications are directly related to brain cancer or cancer. Most of my medications are psychiatric drugs. Quick question; how many of you tensed up at that admission? More than half, I'm guessing. That's a rough estimate based on the number of practitioners who comment upon it. Full admission; most of the meds I'm on are antidepressants or sleeping aids. Further question; how many of you tensed up at that one? A lot of you, because we have that classic image of rock stars in the 27 club (although Eddie Van Halen and Chadwick Boseman's deaths due to cancer should serve as a lesson in outdated phobias) and years of Nancy Reagan just saying no. And then we wonder why grandma is so non-compliant about taking her heart medications.

A further admission about my medications, although nothing I'm on has any direct anticancer properties (there's a bit of debate about RSO, but that's another topic) a lot of them are correlated better long-term outcomes (although, as occurs frequently in biology and medicine, science isn't exactly certain about why that is, and there's always a lot of room for causation/correlation error).

But that’s not the usual response. I’m usually met with remarks like, "You’re on a lot of sleep medications," "I bet you’re sleeping well." Which is like telling a man on crutches, "I bet your marathon training is going well!" Chronic insomnia is a good intersectional point between ableds and cripples, because most able-bodied people have a few restless nights in their experience. Imagine that, except it happens five nights a week. Nothing helps; not exercise, not warm milk, nothing. And then, one day, you discovered some magic pill that allowed you to sleep well, regularly. No more sleepless nights of dreading the hours after 10 pm. No more going to bed at 7 pm because you have to schedule a 12-hour block in order to get six or seven hours of sleep. This is especially critical for ABI folks like myself, because sleep deprivation is directly linked to clinically-detectable brain damage. Of course I take a ton of sleep aids; I know from experience just how deleterious the experience of sleep-walking through life is, and I would rather not do it if there’s a safe alternative. This is like ableds and pain killers - it’s tempting to condemn opiates and medical marijuana until you get a pinched nerve that starts infringing upon your ability to function. Then codeine or CBD starts looking friendlier.

The TLDR version of this whole thing is that practitioners should limit their assumptions on patients based on anything - your job is to coordinate and facilitate health (and, once that happens, stay out of the way), and keep in mind that your patients are probably your own best source of information about themselves. The message to all patients is that pharmaceuticals are like enriched uranium - neither good nor bad, but packed with potential for both. And you’ll have to adjust your attitudes and behaviors on an as-needed basis. And if you have a chronic condition, you need to treat your mental health and sleep hygiene as aggressively as you do your physical health - you don’t get points for overcoming a terminal condition and then succumbing a few years later because the stress and existential dread stopped you from getting to the gym or getting antiseizure refills.

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Science journalist, cancer survivor, biomedical consultant, the “Wednesday Addams of travel writers.”

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