under dark of night the spirits took me

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.  

isn't she dead already?

i am getting dying fatigue.  i think i feel better today but i feel as if there is usually a time period for dying people that they rally and get all excited about not feeling so terrible and believe whatever the treatment, it must be doing it's job.  false hope? on the road to recovery?  whatever it may be, i've only had 4 painkillers today thus far instead of the requisite 6 by this time of day.  i was able to listen to doug stanhope's podcast and make myself some decent eggs, bacon and toast.  it has been awhile since i've been in the kitchen because i couldn't stand upright, and i was frickin' nauseous.  but today, so far so good.

try to imagine constant debillitating pain, that slowly seeps into your psyche like those red slugs in slither.  so now not only does your body hurt but your mind ain't too healthy either.  because your kinecitazoids are out of whack, sluggishly firing on chemotherapy, narcotics and cannabis and whatever you are able to eat.  which for me hasn't been too bad today.  hot water with lemon, cup of earl grey, eggs scrambled with red pepper and onions and cilantro, sour dough toast.  watched basketball at my pop's house with family and enjoyed one of his famous tacos, and tonight for dinner some leftovers of corned beef, cabbage and potatoes, and broth- a single bite of each was all i could manage.

i corned my own beef last year, for st paddy's day and made soda bread and had all the fixings for my favorite shot, the irish car bomb.  boy what a difference a year makes.

my husband went to trader joe's last week and returned with a pre-packaged/brined corned beef brisket, and i protested, because last year's meal was toot toot my own horn worthy, and i simply wanted to be able to prepare what has become a favorite nostalgic meal for me, because it reminds me of my grandma.

last year i started with a 4lb beef brisket off a bovine that finished magna cum laude in foraging top shelf alfalfa and regurgitating cud.  then i gathered spices and made a brine.  layed the brisket in the brine in the fridge for almost a week, turning and stirring the brisket every couple of days.  then i boiled some homemade chicken broth and put it and brine and brisket in the slow cooker for 4 hours. added parsnips, potatoes and cabbage wedges at the end.  while the soda bread was in the oven our friends the bush's arrived and we carefully assembled the fixings for irish car bombs.

irish car bomb fixings are jamesons, baileys and guinness.  take 2 shotglasses and fill one with jamesons, the other with baileys- stack the full shotglasses on top of the other inside a pint glass.  i prefer to have the baileys on top because it curdles otherwise when you pour the guinness.  open the guinness and carefully pour down the side of the pint glass avoiding pouring directly into the shots.  pour guinness until it almost reaches the top of the baileys shot.  the whiskey will have begun co-mingling with the guinness but don't worry.  now chug-a-lug.  my sister kate turned me onto this shot in a beautiful restaurant bar in bozeman, montana where she was cooking supporting my brother-in-law while he was working on his masters.  so we each shoot the car bomb (it was delicious) and i say "well what does a person do after an irish car bomb?"  kate says "another one".  so we did.  and then returned to their apartment where she had prepared corned beef and all the fixings.  she has always been into food and is really fucking good at it.  i have prepared a lot of her food from her food blog hola jalapeno check it out sometime as she is the real deal.

fast forward to st paddy's day 2016 and the only one doing an irish car bomb was my mom.  hilarious.  she knew it was my favorite drink and she wanted to try it.  so i assembled it and she kept saying "can  i just sip it?"  i poured half shots, which was plenty for her.  i have never seen anyone do a shot that slowly before.  but she did it.  and even though i didn't corn my own beef, my husband recognized both my love for corned beef and cabbage and my limitations these days, and we made it work.

i've been experiencing joy in my day to day lately, and it feels so good.  i've also been experiencing some peace, not just peace of mind but of my surroundings, and peace with those i am close with.  so no i ain't dead yet.  i think for awhile i felt like i wanted to be dead already, there is no particular compass or map to help navigate this end of life stuff.  but i've been working on it and towards it for awhile now, and i am so glad that i have as it is allowing for this time to be peaceful.  and i got to enjoy another leprechaun before sliding on that great rainbow in the sky.

the day after yesterday, which is today aka yesterday update

this morning i popped pain pills and shuffled into the tv room to get the latest on richard simmons.  apparently he has not been seen in public for two years and some well respected investigative journalists (matt lauer) found him at home and talked to him via phone.  no skyped show-pony simms.  just his voice denying his house keeper is not holding him against his will blah blah.  which led me to ponder the reason for his absence (i didn't even know he was gone) but i think he got fat, and a giant tank top covered in bedazzles could blind a person- so he stays put.  and if you are known as a fitness guru and you fat, you do phone interviews.

my mom on her own decided to end her vacation and is en route home.  which makes me feel better.  i guess we all want our mommy sometimes.  

i don't think i am getting better.  hard to tell.  but i can share this much with you, that it feels best when i'm not moving.  perhaps simms would like to come and hang out with me on the couch?  

been watching movies to occasionally escape.  yesterday my husband and his daughter and my dad watched slither:

slither is so fucking disgusting and funny.  in the scene above the blob is actually a woman and she says to the folks that just found her "something is wrong with me".  so great.  never been a particular fan of the hooror genre, but horror that is funny......i guess i'm a fan.  i found it on apple-tv btw just in case you are interested.

i just realized i wrote whore phonetically when i meant horror.  one plus i'm still able to make myself laugh.

yesterday

seriously, what do you do with a day that greets you with paralyzing pain and you are fairly certain the treatment you are on to keep you around for a bit longer doesn't seem to be working?  do you gobble pain killers and shuffle into the tv room and see what that wacky al roker is up to?  or do you cry out of fear and pain and sadness until you pass out?  or do you crumple into your spouse's arms and scare the shit out of him and he stays home from work to take care of you?

mostly you just want the pain to go away, so you manage the pain.  as soon as the pain of the prevailing winds of cancer are calmed, now you can see straight, and perhaps even think straight. for now.  you are left with the fact that this is probably how it is going to go down, and i've known about it, hell i've written about it, i've talked about it.  but i'm probably just like a lot of people who have said to me "you actually think you are going to die?" because they doubted my sincerity, or thought i was crying wolf or most likely wish to be spared from talk like that.

even though i've been talking about my own death for awhile it is still a topic both my parents have a hard time finding the right vocabulary for.  they both responded to me yesterday like they had a bad connection on the phone, and were having difficulty hearing me.  i had to tell my mom that our trip to central america will not be happening, and she said "well if it isn't central america we will find another place to go."  which doesn't fit the conversation.  then my mom said, " should i come home?"  she's out of town, and apparently wont be returning for another two weeks, unless i say i need her.

i don't know how i'm supposed to say it more clearly but i just shared with her that i didn't think the treatment was working and that the pain is excruciating and that i could barely walk.  now on top of all that i'm supposed to say "mom cut your vacation short because i'm dying"?  hasn't that been implied?  see what i mean by a bad connection.

i don't really need her here.  it just confirms my belief that if you live in denial then you have a hard time recognizing reality when it surfaces.

but to be honest even though i have been talking about dying from cancer, it doesn't exclude me from the next week club- death is nigh, but not until next week.  shit i've been living with this since 2009, and i've known in my gut it will get me, but when it knocked at my door yesterday i got really scared.

but the good news is i think the chemo/treatment may be working?  a little?  i'm scheduled for every three weeks a cocktail of opdiva/yervoy administered via iv.  so maybe a little more time.  to spend with my mom.  wink wink.

chemo and james taylor

i spent three hours today at the hospital being poked with needles and filled with poison to combat the melanoma tumors that i can feel still growing despite this being my second treatment.  go fuck yourself melanoma.

i recall cavalierly writing awhile back that i didn't wish to do chemo.  but i wish to be alive.  but the downside of life with cancer and chemo is that the life i have is quite a departure from the life i'm willing to subject myself to in order to stay alive.  and i have to reconcile that i am trading death for feeling queasy, peeing out my ass, fatigued and mostly bummed.  fair trade?  i guess.  for now.

i barely slept last night, i laid awake thinking about how sad it must be for my family to accompany me to the hospital.  and then i got sad.

but then i thought about how nice it is spending time with my family.  we've had conversations that are more honest than i probably would've ever had if i hadn't been diagnosed with cancer.  family members' that would never dine together due to break ups and divorce all gather at my table like we are all one great big family.  it's kind of nice.

and i consider my friends as family.  wow.  my friends have been generous with their time, their concern, their humor and their pocketbooks.  and i am humbled by you.  it makes me feel like maybe i'm not such a douche after all.  but i don't know how to repay your kindness other than to simply say thank you.

thank you.

today my dad accompanied me to treatment.  he drives a different route than my mom does when she accompanies me.  my dad just gets us there.  my mom acts like she forgets how to get there, everytime.  we've been going to the same hospital since 2009.

so my dad and i goto breakfast after treatment and i am able to choke down a little bit of food when a james taylor song comes over the loudspeaker.  and i leaned in and said to my dad, "if james taylor were here right now i'd stab him in the cheek with my fork, i fucking hate james taylor" and i pretended to stab myself in the cheek with my fork.

my dad looked at me, smiled and said "i wonder if that's genetic?  because i can't stand james taylor either."

 

it's a good day to be alive.

cum on ilene

new years day i awoke to that insipid ear worm of a shit song.  and again today groundhog's day.

2016 should be good as it started on a friday.  but so far it is fairly shitty.

scan in december showed good results results.  then a few weeks later i felt another tumor.  "we will have to amputate the left side of your torso but good news you don't really need your left side to live a rich and fulfilling life, you just need a side" said ben carson.

the chemo is fatiguing.  and edibles aren't notorious as a stimulant.  i need mama's lil' helper, i feel the need

so i've made it to caucus time in iowa.  jesus who to caucus for?  i'd rather caucus for potato ole's to be president and the shitty cheese sauce as vp than this lot of ego maniacs.  but i will caucus god dammit.  i upped my chemo because another tumor is on the rise.  what is also on the rise are crazy candidate ads vyying for votes.  huckabee's latest ad is nuts and left me speechless, huckabee actually took this ad down but other entities had already reported on it so here is an abbreviated version, it is a gem:

if i were to vote based on commercials it would be huckabee.  but i think we disagree on a lot of things.  but the truth of the matter in this primary season is the presidential race is bs.  local and state races matter more.  but less voters participate.  and now because of all the dark money allowable by law, we get a bunch of corporate schills and a bonus adult baby billionaire vyying for our vote.

and yet through all this i gotta deal with melanoma.  it used to be about once a year i'd have a scare and subsequent surgery.  now surgery is off the table as six weeks past my last surgery a tumor surfaced in the exact fucking spot where the surgeon operated.  so now i'm onto chemo and immunotherapy.  well the chemo worked for a minute until it didn't and now what felt like a marble last week is a racquetball in my groin which is affecting my gait and my non-existent sex life and i have bruising all over my inner thigh and i'm in pain and back on shitty painkillers.

i have a scan scheduled for today and of course i feel like it will see its' shadow, but aside from that there is a blizzard warning and the radioactive goo comes from omaha and due to weather the scan may not happen so i may have to be patient and wait another day or two.  fucking blows.

caucused last night.  kind of fun.  i caucused for baby boy bilionaire bloviator.  no i didn't.  i caucused for the candidate that has the potential to put an end to the testicle festival.  there have been 44 men who have occupied the oval office, that's 88 ball sacs.  sick of sacs.  also i will be 45 march 2nd, and well this election will decide who will be the 45th prez......so the lady won my vote, and my particular caucus.

i'm less and less involved with politics due to being more and more disillusioned by all the dark money in it.  i used to get off on it, not to mention i was kind of good at it.  in fact i was part of a piece on nbc back when i first got involved.  toot toot.  not that big of a deal but thought it was the appropriate time to share.

so consider doing something civic minded today:  help an old lady across the street, shovel your neighbors walk, or tea-bag an old man's ball sac.  so many options, so little time.

i don't work

so i don't got a case o' the mondays.  in case you do, this might put a little showpony in your step:

then later at home watch "town meeting" with a cocktail and a friend who likes to laugh with you.  i cried laughing when the skunk showed up.

thanks kit for sharing gayle with me.  she's the new badger.