the proverbial cherry being a fucking "lesion on my cerebellum" said the physician assistant over the phone yesterday morning. we had visited the university of iowa specialist the day before and what i thought would be a routine consult about how to possibly better steer this vessel of melanoma (of which we discussed, quite theatrically) came down to "i've got to see your brain first, can you stay and have an mri in an hour?"
so they gave me a valium and i happily slid into the chute listening to '70's rock which was not a great choice, because it wasn't the faces or the stones it was kansas etc but valium makes kansas tolerable.
valium may help make all of this a little more palatable. i had to be poked three fucking times before they found a vein to draw labs from and inject contrast dye. mo, as in mohammad milhem melanoma specialist, ordered labs to determine if my adrenal, pituitary and thyroid were even functioning and they are not. i am severely hypo-thyroid due to scorch and burn chemo. what i thought were severe side effects of chemo were also effects of these glands not being able to do their job like: thyroid- regulating internal body temperature; adrenal glands sending steroids in to help cope with stress- the fight or flight in house coping hormone is missing, and i cannot handle any stress physical, emotional or otherwise because the chemo wiped it out. so i've been prescribed hormone replacement therapy.
i don't know if there is any hormone replacement therapy that makes it any easier to swallow the words "you have a brain tumor" but i am willing to give it a go, atleast to fucking level my shit out.
this morning i am heading back to iowa city to see a man about stereotactic radiation surgery on my brain. then a second consult with mo. he has yet to hear my proposal for organizing a taco trial. then at the end of the day today the real cherry on top is we have tickets to see david cross. i need a good laugh.
for the proverbial walk. wtf does that mean? well it means that for the past 8 days and night i have been spelunking in a cave full of chemotherapy replete with nausea, vomiting, super high temperatures which led to hallucinations and one night my husband found me walking in circles, but i thought i was in the woods and i asked him how he knew to find me. he sat me down on the porch and gathered ice bags and then bathed me in ice in our bedroom to cut the fever. fuck me.
so i had a scan yesterday and the decision to discontinue with this course of "immunotherapy" was made a little easier when we discovered that one of the tumors in play is actually bigger than before. but the one in my lung which was "maybe inflammation" has responded. off to iowa city where they got a new fancy noma doc. i'm really hoping to participate in a clinical trial where stage 4 metastatic melanoma patients just eat tacos al pastor, cured - drop the mic.
i cannot imagine going through chemotherapy and being a single parent. i cannot imagine going through chemotherapy and not having a support network. i have a very good friend that has been a cancer patient herself, and she knows this young man who lost his parents and is if i recall correctly also living with aspergers, so he doesn't have a lot of friends and was just recently diagnosed with stage 4 lung cancer and did one of the drugs i'm on "opdivo" and vomited so violently that he tore the stomach lining from his own stomach. but he didn't phone rendy up for him, he needed help with his dog, and care for her. rendy being a champion of quadrupeds and underdogs helped. but who's cleaning that guys bathroom? or holding his hand? what kind of irresponsible oncologist prescribes some pretty nasty shit to combat cancer but neglects to prescribe medical marijuana to help with the nausea?
cannabis saved my stomach lining from being ripped from the tummy, and i don't live in a medical marijuana state. i live in a state where the 99% white 73% male dominated legislature is waiting to see how the colorado "experiment" is working, before passing any medical marijuana legislation. meanwhile people languish or have friends and family that do what they can to help, illegally. so when the insurance industry i mean iowa legislature finally decides that medical marijuana wont nip at profits from pharmaceutical companies making billions poisoning you, why don't you show some mercy and see that allowing a terminally ill patient access to the relief that hemp, cannabanoids, thc has to offer is a symbiotic solution. and a compassionate solution. and until enough money is funneled into research and development for alternatives to slash and burn treatments like chemotherapies, immunotherapies the only solution. but it's a few stalwarts that need to be voted OUT and this ship turns around. wake up.
my husband and i are spitballin' ideas about what's next. my first thought was hop in a car and do a farewell roadtrip, destination friends and family along the way, prepare and share a delicious home cooked meal with them, laugh, cry, go for walks, say goodbye. then point the car towards a right to die state. kind of intense to think about, talk about. but just look at it this way, i'm sure you have a road trip or vacation planned, the difference is you probably didn't cry when you thought about yours. it takes my breath away sometimes. but then it seems like an extraordinary opportunity. and having come out the other side of where i've been for the past two weeks i have brief moments of euphoria. when i awoke saturday morning and was able to move and everything was/is budding or in bloom and it is 75 degrees and my palate is alive and so am i and i can walk my dog, i am needless to say fucking elated.
this morning when i turned my laptop on barry white's "it's ectasy when you lay down next to me" was playing. nothing wrong with a little barry white in the morning. in fact i used to give rim jobs along the south rim of the grand canyon, and i would occasionally catch a ride with my co-worker glenn a black man who drove a white cadillac and he worshipped at the altar of barry and we'd drive 15 minutes through the kaibab forest cranking barry. fun memory.
