Thursday, September 24, 2015

i lost weight!

and the tumors shrunk.  my friend megan said this is the one time when shrinkage is a good thing.  but let me share with ye how i got here.  it ain't pretty.  at one of the lower points of my six days of being severely sick, i was on the couch and my sweet husband was working a second job roofing, and had left me with anything i might've needed within arms length.

it looked like a beautiful autumnlike saturday, and as mentioned i am in the supine position on the couch under three heavy blankets in the throes of a teeth chattering chill whose icy grasp i was a slave.  so i'm freezing and shaking and the doorbell rings.  i yell "who is it?" and ace is barking, the front door is open so the screendoor is the door this person is ringing, and is not answering me.  doorbell rings again.  ace barking, i know it's a stranger cuz ace is barking so "who the fuck is it?" i yell.  doorbell rings again and i scream "get the fuck outta here".



the cold snaps were followed by hot flashes.  i had big red spots covering my arms and legs that were deep tissue bruises.  i threw up so hard that i peed my pants, when i told my husband what had happened he said "i don't think you should beat yourself up for it", i said "i'm not this is just a public service announcement, there are some soiled pants in the bano".  each day i was sick there was some surprise symptom that would rear its ugly head, like one day i had shooting pain in my ears, then ringing in my ears for hours.  but my favorite was hallucination day.  i could see all of my veins and my blood was the color of fuschia.  i saw a lizard and walls would move closer.  oh yeah then i had some awful auditory hallucinations that sounded like a beast, it sounded like the poison my oncologist prescribed me, if it could talk.

my oncologist took me off the $18,000.00 meds for a week due to the severe side effects but wants to visit tomorrow about going back on one of them as a process of elimination to discover which one is responsible for the side effects, lower the dosage, then continue.  i have no interest in feeling like i felt for the past week even for 5 minutes.  what am i a lab rat?  the fact it did its job but nearly killed me in the process blows.  because i want to live, and it would seem that the cancer doesn't thrive under the influence of these drugs.  but then again neither do i.

i have continued with herbal supplements and fungi, been doing astragalus to boost immunity, zeolites to pull shitty toxins out of my system, milk thistle helps to clean out the liver, black cohosh for lady changes and siberian chaga mushrooms for super-human powers and trametes versicolor aka turkey-tail mushrooms they specifically target cancer cells and in some incidences reduce tumors.  so i'm hoping for a middle ground approach and less scorched earth, something that is less toxic and in combination with some complementary and alternative medicines will allow me to walk on this earth for a few more days. 

i want to say some thank yous. 

to my husband, you are strong, courageous and thoughtful and i cannot imagine surviving this past week without you.  i am so very grateful for you.  i am also grateful for my family and friends each lending your support in beautiful ways.  the edibles from colorado were a lifesaver last week, thanks ellie and hans.  and thanks lora for a clean house. and david thank you for the produce, and your time and the too spicy soup.  winking butternut squash crab slinging hot peppers in its claw emoji.  and to my wickedly funny sister kate, she sent me this text: "meds ugh, can't live with them can't live without them JK".  



Thursday, September 10, 2015

good day

today is another good day.  the good days started yesterday.  why?  i think it may have something to do with the fact the insurance company approved my request for lifesaving meds last thursday and because i have great friends who pushed me to scream at the folks in charge of distributing the meds so i was able to commence taking them saturday instead of waiting until yesterday (wednesday).

it is an ugly story, in that bureaucracy and people who don't have your back are in charge of your fate, ugly story.  which included my oncology nurse and a pharmacy tech from flint, michigan.  that is unless you kick them in the crotch or clang your cowbell in their ear while they sleep, which is what my friend rendy suggested or rather demanded i do.  which pissed me off because i had done all i thought i could do, i got the insurance to cover the meds for a $30 co-pay but because of labor day the delivery was going to be delayed one week.  i guess i was so happy that the expensive meds were covered and that i had already talked twice with the pharmacy regarding speeding up delivery but to no avail that i was somewhat ok with the delay.  but my body wasn't ok with the delay.  the cancer was metastisizing rapidly and i felt as if i was turning into a marble statue.

so i call rendy to tell her the mixed bag of good news but she wasn't havin' it, in fact she asked me who was advocating on my behalf because she knew i was in pain and exhausted and needed help, she knew i needed those meds and i needed help getting them.  so because of her and a previously planned trip to chicago (and the fact that the mail order pharmacy has a store in chicago) i made a tear-filled phone call to the pharmacy, i was able to begin taking my $18,571.00/month meds last saturday.  and i haven't felt this good in months.  fuckin' a charo.