prune juice in the parking lot

i have done things, and have had things done to me in the past 9 years that even surprise me.  i have had six surgeries to cut cancer out of my body, one of those surgeries being second only to open heart surgery.

i have been on andre the giant size portions of opiods to combat the pain of surgeries and to quell the pain of tumors growing like kudzu in my body.

i have endured three different combinations of chemotherapy when the surgery was no longer working, which also coincided with new advancements in the field of study of melanoma, but far more toxic than going under the knife.

i have done all of this while simultaneously attempting to live as quasi a normal life as possible and readying and steadying myself for death.  but none of this is out of the ordinary to me, or to any person dealing with a terminal diagnosis.  so none of what i just wrote has been too extraordinary.

what was surprising was having my local oncologist basically say he didn't know what else to do with me, that the disease seemed to be taking a turn for the worse and recommended a new specialist the university of iowa had hired.  so my oncologist gave up on me and pawned me off.

two weeks ago i found myself in iowa city at what i thought was going to be a routine consult with this brand new doc who wants to just be called "mo" (short for mohammad) and the next thing i know i am having an mri, and the next morning at 7:59 am exactly i see the 319 area code pop up on my phone and i know it is mo and i know it isn't good news.

one week later i am having brain surgery, and go home an hour later like all i had done was scraped a knee and the school nurse cleaned it up and placed a band-aid on the wound.  then i was offered one option as far as treatment goes, to join a trial.

this trial of course being spearheaded by mo, it combines traditional chemotherapy with an injectable directly into the tumor, once a week for 7 to 13 weeks all in iowa city.  uh none of this sounds appealing, i would be only the 4th person in the world to have this procedure done and "it looks very promising, and isn't it exciting to be on the cutting edge of what may potentially save lives?"  what the fuck are you supposed to say to that?  so i said give me a few days to think about it.

so my husband and i take a few days to visit some friends in northern iowa and wisconsin, where we ate morels, hunted morels and sat by a bonfire and hit up a spa for a night where i treated myself to a skin cleanse/swaddle/7 head shower head rinse that was so delightful and womb-like i am surprised the massage therapist didn't catch me sucking my thumb after.  oh it was so nice.

as we were leaving wisconsin my head was heavy in thought about what to do with regards to my health, but my colon was also heavy and i asked my husband to stop at the piggly wiggly where we actually debated in the juice aisle whether or not to buy the prune juice because it wasn't organic.  i know, i know.  the cap was off before i reached the car and i chugged half the bottle.  relief wasn't long after the chugfest.

so yesterday just 2 weeks out from my initial visit with mo was the big decision day.  my mom and i drove to iowa city and i was 50/50 about participating in the trial.  i had emailed mo all of my questions and concerns and he came prepared, i thought he would be all about the hard sell of being on the cutting edge, and to "trust me" which he had said more than once in two previous meetings with him.  but he was and he wasn't all about the trial, he was all about what was best for me.  he said do a ct scan and if things look differently than before maybe we do a different course of treatment.  so i said i could live with that.

i have the ct scan and 20 minutes later we are back in the cancer ward in mo's office and he said "your tumors have shrunk, some by more than 50%, your treatment is working- i want to keep you on the same treatment for just two more cycles, but dial it down a few notches so that it is not so toxic and because we discovered you basically had a thyroidectomy (due to toxic levels of chemo) and are on hormone replacement therapy you should better weather the treatment".  say what?  i asked him to repeat what he said, then i hugged him and he hugged me back.  then i said well what about the trial and what if i miss out on this potential miracle drug combo?  he said "you no longer qualify for the trial, your body is responding as it should to your immunotherapy and i believe with a few adjustments we can get you into remission".

those words were like magic.  those words were the equivalent to the relief i felt after chugging prune juice in the parking lot of a piggly wiggly.  those words strung together in that sentence have been life changing.  i am so stunned by what transpired yesterday that tears are rolling down my cheeks as i write this.  i still don't think i've fully taken in what all this means.  i am still a bit skeptical, maybe cautiously optimistic, and am going to take one day at a time and be as present as i can be in each moment, and every other fucking cliche dying people hold onto.  but god dammit i haven't had good news to share in years.  i cannot express in words how much better i can breathe today.

fuckin' A.

brain surgery today, what should i wear?

i just envisioned a clown suit.  picture a clown in full makeup and colorful satin shirt, giant polka dot tie, striped pants and giant shoes sitting in the only chair in the room, a dentist/medical chair smack dab center stage and the only light an overhead spotlight revealing a rubber chicken waddle peaking out of the lapel of my shirt.  on cue the room becomes pitch black then a labyrinth of red beams of light coming from behind me converge into one fukushima laser at the base of my skull for 20 long minutes.  when the lasers are finished with their cremation the overhead spotlight returns and i stand start honking my big horn and swinging the rubber chicken over my head.

brain tumor shmame moomer.  that's what the docs made it sound like.  easy peasy.  fuck me runnin'.

cherry on top

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.

hello daddy, hello mom

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.