Wednesday, April 30, 2014

life in the dual zone...

a social worker met with me yesterday to ostensibly discuss how i'm doing with the prognosis i've been given.. her first question was, "so, well how do you feel about the decision you took to pursue your 'naturopathic treatments' (her emphasis not mine) you know, and now find yourself in this condition in hospital?"

"well, if i'm not mistaken, every single one of the patients in this ward are here after dutifully following their doctor's advice to take chemo and radiation, have you asked them the same question? you know, how they feel after following standard of care and its promise of remission and greater quality of life, but find themselves in this condition in hospital?"
i had fantastic quality of life from diagnosis until i took a sharp turn last month. my blood panels are all, as they say, unremarkable, my constitutional health is vital and strong, which is why i'm proving such a quandary for the white coats, the odd combination of a healthy body grappling with an advanced and gratuitous cancer... and that's all down to the choices i made last year...

its interesting to me that i'm constantly treated like i'm faking an illness until the diagnostics come back to cross check on my behalf, because when you look at me i can still walk, my organs aren't broken down, my system hasn't been corrupted from months if not years of pharmacology, so no one quite knows what to do with me. . when the relapse hit i had to seek assistance with pain management because of the aggressive nature of the kind of cancer i have, but from the start i've always maintained that i keep my options open and be sensible about how i pursue treatment. allopathic medicine has its place but so far it hasn't had anything to offer in terms of treatment. pain management is another affair. you're not going to reach for essential oils if you've broken your leg. its interesting however that following doctor's orders on pain management to the extent a certain desperation and common sense guides me to, has left me only seeing the negative side-effects... of palliative radiation, of taking drugs to counterbalance side effects of other drugs, but none of the benefits, so, as i said to the social worker, "maybe you want to reframe your question a little and get back to me." :)

and that's the nib of it... my white coat team has been getting increasingly uncomfortable... after proclaiming the benefits of palliative radiation it seemed a good gamble (one i don't regret, i was delirious with pain so i won't judge myself, plus i'm also an investigator, i was interested to experiment and see if perhaps i honestly was missing out on something of benefit), my body's responded instead with an incredible surge and overgrowth of what i would call a topical lymphangitic cancer (it was only yesterday that an MD acknowledged that TNBC has a reputation for not only quickly getting into lung, bone and brain, but expressing in these wild topicals... of note, this was never trotted out for consideration for me when we were discussing pros and cons).

i think for these reasons they are reactively casting me in an adversarial role. almost every interaction sees a team member casting us as medical model antagonists, or that my body must be behaving so wildly because i explored alternative treatments, so i'm getting what i deserve. further, their only remedy time and again is more radiation which is where the limits of my credulity are willing to go. not only do they want to radiate the L breast since it's been so completely overtaken by the topical cancer, they want to CT my brain since i'm starting to present Sxs that might be signs of metastatic brain cancer... i'm reluctant just yet as i also think these symptoms could be side effects of the mucho drugs and the radiation itself... for example, i'm having trouble swallowing, particularly liquids. it was only last night that i had trouble getting solids down too. i knew this could happen when you apply radiation to the spine in the thoracic area as we did last week. their solution is to put me on more meds, which in turn will have their own side-effects, or more radiation, which has spin of its own.

thus far i've said let's wait for more clarity on the brain symptoms... yes i have blurred and double vision, and i have little seizures, but these started with the hydromorphone and until i see clear evidence to contrary, i'm going to let them stand... the double vision is new, and the seizures have become more dramatic, but they coincide with boluses which for me is cause for pause... in the literature they are called myoclonic spasms. in any case, the only treatment they would offer if a CT came back positive for mets, common with TNBC, is full brain radiation. i doubt i would make myself a candidate for this. have to research today what to expect if i leave metastatic brain cancer untreated versus what to expect after full brain radiation. the lady in the room next to me just completed a course of full brain radiation, she's doing everything the doctor's tell her as she has very young children and relatives adding to pressure. over the time i was roommate to her i saw her at the outset pretty ambulatory and with some spark in her eyes. after the radiation she was uncommunicative, never left bed, and looked pale, swollen, wan, and the spark was completely, i'm sorry to say, extinguished. when white team brought up full brain radiation yesterday, on the same day my roommate was sent home to either recover or deteriorate, it made sense to me that i'd been gifted this observational situ.

so yes. these are the decisions one has to face down, and i love being in the driver seat, i love not having to explain my choices, i love being in a contrary environment that requires that i take a 360 view into account and synthesize an approach that uniquely suits me but couriers in facts and reality, that i don't just do what i'm told and stew about it on the sidelines as if i have no power when dialoguing with a medical authority. if we're going to talk about evidence-based medicine, let's really.

as for the trouble swallowing, i've found an old-fashioned solution from an old-fashioned nurse that's working just fine, eating ice chips. i'll see how i do on food. the 'problems' that arise each day give me new direction for my guided energy work, my personal inventorying, and my movement practices. for example, i can only sit up comfortably for less than an hour before i have to take a break. i have significant pain in the R trapezius that i have to work on, it only comes up when i sit in a chair. so far no symptoms of lung encroachment, i'm doing a lot of pranayam and visualization to keep them strong, to keep me strong as well... onwards!

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