#thank god though I gave my manager that letter from my oncologist earlier this week

[interstate40]

welp.

my bowels actually started going off at work so I had to go home early to repeatedly shit for the rest of the night in peace

[braindamageforbeginners]

A New Doctor

Cycle 9, Day 10

So, I now have at least a half-dozen physicians on my case. If you believe the BMJ stat that “medical misadvenure” (which is a broad category that includes, but is not limited to, doctor error, nursing error, pharmacy screw-ups, misdiagnosis, accidental overdose/drug interactions, opportunistic infections - the list goes on) is the third-leading cause of death in America (according to the same study, heart disease is #1 and cancer is #2). So, for those for those of you setting odds on my life expectancy (and, frankly, I’d be disappointed if you didn’t), it’s been an odd, extended game of “Clue,” except I’m Mr. Body, to see if disease, side-effects, or my possibly-insane physicians will get to me first. I hate to say it, but I think I’ve finally figured the odds-on favorite in this one: my GP.

This isn’t a plea for help, or even a serious medical development on my part, it’s a warning for you, the readership, as insurance enrollment comes around. First of all, if you can’t pay, hospitals or physicians can throw you out on the street (this is something able-bodied people are so disbelieving of that took a poor black woman freezing to death on-camera in Baltimore). They are only required to treat you if you in an emergency situation, thanks to some federal laws called “EMTALA.”If you have a disease that drives you to the emergency room, the prognosis gets worse. People tend believe that just because it’s the healthcare industry, the health insurance industry isn’t a corrosive force that has a vested interest in denying care and killing you. Which is odd to me; you don’t get this anywhere else (or I haven’t experienced this sort of self-delusional attitude); you don’t see people defending McDonald’s or Nabisco or RJ Reynolds or Exxon as having their best interests at heart (and, to my friends who think they’re bullet-proof because of their health insurance, read the fine print, very, very carefully; you don’t want to get a nasty shock as you’re being rolled into the OR). So, thanks to my parent’s generosity/desire not to see me die, I rolled in last year with a very expensive PPO (there are a lot of acronyms to keep track of, but PPOs allow the patient to see anyone in a preferred provider network, which tend to be large and give the patient lots of choices, so you can directly get a referral to a neurologist if you hit your head). Unfortunately, because I have pre-existing conditions (and to my bullet-proof friends, read through the list of pre-existing conditions that’ll disqualify you, your jaw will drop)(also, it’s telling that Congressmen and Senators have the option to buy into a separate, federal employee health insurance option that’s not available to us serfs)(it’s also telling that the ACA required Congresscritters, for the first time ever, to tough it out and find health insurance like their constituents)(which is why I assume all the GOP higher-ups had melt-downs over the ACA - a slight removal of privilege to help sick constituents isn’t a part of Congressional ethos, let alone job description), my premiums went from “expensive” to “leasing a sports car” within a few months. I’m extraordinarily grateful to them for providing that financial backing, because it allowed me to continue getting treatment during the crucial 6-10 week GBM post-diagnosis period that might turn this from “Guaranteed doom” to “far too close for comfort.” So, this did give me some time to do my homework (in writing about this, I’m realizing I really should consider applying to law school, because I’ll know more about medical and insurance law and ethics than some lawyers before this is up)(Hell, I probably know more than some of them right now). Anyway, I found that all the specialists I see for cancer, do take medicaid (even the specialized pharmacy I use at the cancer center). Which is good for me, especially since being on disability in California is an automatic qualification for Medicaid. Now for the bad news; although all the specialists there take medicaid, the GPs don’t. AND the specialists only take medicaid if it’s done through an HMO carrier that the state sub-contracts with.

Great Kraken’s Balls.

There are a number of documentaries and documents (including an “Adam Ruins Everything” segment) on why HMO’s are unnecessary and lethally incompetent (like many other aspects of a for-profit medical system), but here’s the most basic deal: They act as a gate-keeper for the entire medical-industrial system. You can get your care at any of a dozen pre-approved hospitals, and nowhere else. Now, if an HMO or their doctors can’t treat you (or refuse to treat you - which is still the case for a lot of GBM patients), they are required to send you to a specialist who can. The economic incentive is to give less care, and keep all the patients in the system for as long as possible.

I suspect that delaying tactic is why heart disease and cancer are considered so deadly - you can’t sit long on either of those.

So, based on the financial folks at the cancer center, I picked one, and promptly forgot about it; because I’m already in the system there (the receptionists and pharmacy staff recognize me on sight)(which is comforting, until you realize it’s a cancer center, and then the panic briefly cuts in until you remember you’ve gone eight months without regowth or metastastis). I only remembered it when I got a call from the medicaid HMO telling me I should schedule an appointment with one of their physicians. This isn’t a big deal, I just need them to sign-off on any further black magic-based treatments with the Warlocks or Radiation Oncologist.

Now, before I go further, let’s talk about the people who go into medicine. Like anything in healthcare, we tend to give assume that an entire industry is moral, and just; when people go in for a variety reasons (as recently as 20 years ago, the vast majority of medical students said it was for money), and it’s worth noting that cuts across a vast majority of demographics and motives. And, for better or worse, that cuts across vast swathes of competence - for far too many folks, it’s a job - a rewarding job, but just a job. My father recently inquired about board exams and recertification as a way of guaranteeing some basic level of competence from everyone. He’s right, but the key word there is “basic.” Again, “basic” is fine for first aid and most major medical issues; it’s unacceptable if you have a disease with a 90% fiver-year mortality rate.

I bring this up because I think I chronicled my first appointment with my insurance-appointed GP five or six weeks ago and seemed perfectly satisfactory to my ongoing addiction to experimental chemotherapy. I’m certain it was within that time frame, because I had schedule a six-week follow-up. Which, sadly lands on my “week off” chemo. So, yesterday, after infusion #2 for this cycle (for those of you wondering what I’m doing to stay busy during infusions these days, well, rewriting Christmas carols for cancer patients)(”On the first day of chemo, the nurses gave to me, zofran in an IV”). I also convinced dear old Dad to take me out to lunch, because, again, when the Marizomib side effects hit, you do not fee like eating. This was in the neighborhood of the latest addition to my collection of medical people, so I thought I’d reschedule then. And was told by the receptionist to wait for everyone behind me to check in lest they be late for appointments. That would be fine, but it seems a fundamental misunderstanding of how queus work. And, any time post five-ish hours on infusion day, even though zofran might keep me from puking, it does give me an odd, oily, queasy sensation. I think I deserve some sort of gold star for not puking on this woman right away (again, if you have unconventional problems, feel free to start with an unconventional approach)(my next writing project will be titled, “Life Lessons from Necromancers”). I eventually - using the traditional method of looking down the reception counter, noticed someone not otherwise occupied, and manage to get an appointment more amenable to my schedule. For a physical.

Again, I’d love to use some four-letter words here, but even Finnish fails to meet the requirement. Now, it should be noted that, even though I’m well-aware that I’m physically Adonis-like; I am in chemo and recovering from radiation treatment, Radiation Oncologist implied a few months ago that, even though my scan was clean and looked good for someone with brain cancer, anyone unfamiliar with my case would probably freak out about them. Same thing with my abnormal, uh, “lab sample” I wrote about recently - the nurses agreed, a single abnormal test is hardly unexpected toward the end of chemo, especially since I’m now on a diet consisting mostly of protein, fiber, cafeine, and dangerous, experimental substances. However, I’d prefer not to have to point all that out to a new medical person who has the power to yank the plug on me (sadly, my original GP will be on vacation that week. (I’ll also be on Temodar, so there’s a solid chance my brains will be thoroughly scrambled and incapable of comprehension).

ANYWAY… WEIGHT: 198 lb CONCENTRATION: Pretty good, APPETITE: Normal (but this is 24 hours post-infusion. ACTIVITY LEVEL: Not great; the fatigue side effect definitely caught up with me and chewed me up last night. SLEEP QUALITY: Okay. although I’ve noticed that I definitely thrash around on chemo days. COORDINATION/DEXTERITY: Lousy. Thank Gods I don’t need the walker, and I don’t even think I need my magic ankle support, but my left leg is definitely unreliable today. MEMORY: Not bad, although I did forget my sheets were in the wash earlier today (although I recall stripping the bed and tossing them into the washer). PHYSICAL: Tired and kind of wobbly, but still a lot better than this time a year ago.. EMOTIONAL: Okay. It might just be that I spent yesterday next to my zofran-and-CDB salt-lick, but I’m starting to think I might make it through all this somewhat intact. Hang on. Am I really starting to believe my own bullshit? SIDE EFFECTS: Tired, somewhat sore (either chemo or increasing the difficulty of that stupid elliptical), and in the wrong time-zone, but, other than that, not much.  CURRENTLY READING (For Donna): Gonzo Girl, and The Explorer’s Guild (A Passage to Tshamballah)