big fucking cannonball of poop

as i opened my computer i realized today is my mom and husband's anniversary.  they used to tell me i was the only "kid" that tended to recognize them.  well probably not this year.

we had a great big blowout a few days ago, that is my mom's husband and i.  let's back up about a year and a half ago, so the summer of 2017.

in the summer of 2017 i mentioned that perhaps an online cognitive test was in order, i had heard about it from doing some research online about early signs of dementia, because it seemed that my mom was displaying some cognitive behaviors that seemed not like her.  apparently, a person takes the test online, prints out the answers and then that piece of paper is taken to the persons GP to be interpreted.  this was met with, "well are YOU going to take the test?", i said if that's what it takes i will.  which to me is like the equivalent of me having said 10 years ago pre-melanoma, 'well are YOU going to have YOUR mole biopsied?"

needless to say nothing happened.  so now it's 2019 and there have been more and more incidents albeit small, but in my mind telling.  but then there was this, i had a scan a few weeks back and got the results via phone later that day.  i shared the results, which were "stable" with my mom and we embraced and talked for a few minutes about it.  the very next evening she asks if i've gotten the results from the scan?  i had to brace myself and had learned from a dementia class not to betray that you've already discussed this matter previously, so i leaned against the wall and said yeah, yeah, it's good news it's stable.  you see what troubles me about this exchange regarding my cancer, is that my mom knows more about my cancer, my appointments than i do.

something is definetely happening.  and on top of this my family is fractured, this person isn't talking to this person and that person isn't talking with that person and i feel stuck in the middle and a victim of other people's shit because it means they and their kids don't come around for the holidays or barbecues etc.  and so this year, because of my mom's i don't know what to call it, cognitive slips, undiagnosed, i wanted to revive a family tradition of making lefsa which died for us whaen my grandma died 18 years ago.  we were in my mom's kitchen talking about how fun it was and how time consuming and how grandma did it herself for so many years.  whaen my mom's husband arrived in the kitchen things took a turn.

i asked him what his ideal christmas looked like? you'd think i asked him what it looked like when he mutilated that puppy (which didn't happen).  he said i don't know what does your ideal christmas look like?  i said one where the whole family is around and that i wanted to gather everyone.  he said i was to do no such thing.  i'm pretty sure i told him he sounded like an asshole.  then my mom left the room, and i took the opportunity to say, you know i'm doing all of this for mom, because i want her to have this before something drastic happens.  he said, "she only behaves like that when you're around" translation, i cause her to display symptoms of mild dementia.  this is not the first time he has said this to me.  so i asked him to repeat it, and he emphatically stated at no other times does she behave like she has mild dementia unless i am around.  so blames me for the behavior.  i told him to fuck off and he told me to grow up.

this is truly upsetting, on many levels, and now it seems that three of the four siblings have been alienated from our parental figures, some by their own hand and obstinance.  and others because too much time has passed and it feels like the new normal.  one of my siblings won't even answer my calls and i haven't done anything, just caught up in the cannonball of shit guilty by association.  and now me, perhaps i am alienating myself, but i certainly don't want to be around a guy so full of fear and denial that he blames me for what is an ungoddamndiagnosed disease.

merry fucking christmas.

i didn't want to bring any of this up to my mom, because i didn't want her to feel like she had to choose between me, her daughter, and her husband.  but guess who ran to her?  so she confronts me about why would i say things like her having dementia?  and that she takes those things very seriously because many of her friends etc are dealing with it, either have it or are caretakers of someone with it.  i brought up the scan results, and some other things, she said "it sounds like you're putting words in my mouth", which is when i realized this conversation is futile.  and then i told her what do i have to gain by bringing this up?and how upset i was with her husband and she agreed that he should've never said that.  it's been five days and not a peep from either one of them, well i did check in with my mom and told her i loved her because i am devastated by the prospect of her feeling bad about something she may or may not have control over.  but radio silence from her husband.  and christmas is around the corner, and it will take a fucking miracle to get this shit straightened before then.

but the good news is, i don't have cancer at the moment.  that's the takeaway miracle i guess.  so you win some and you lose some.   

is this how anne frank felt?

did anne frank feel as if she wasn't living her best self?  or did she just try to be in the moment, be mindful "i am a jew and i gotta be quiet, but quiet is good, quiet begets another day.  one day at a time, right mackenzie philips?  like aa.  "fuck", anne frank muttered under her breath "i could use a drink, or some gas".  cheap (the joke).  but i mean laughing gas. it's fucking 10 below zero outside.  all i'm craving is cheese.

i can give you 10 reasons not to like the dave matthews band , but does that make it true?  right?  maybe righteous, but not right.  so did anne frank live her best life?  what the fuck am i supposed to write?  she came, she saw, she left a diary, she gone.

is she a touchstone for me, for many?  on january 2nd 2018 she was for me, but as a butt of a joke.  do jews go to hell?  i'd give her a fuckin' hug.  you see for maybe 7 solid days it was subarctic temps and the outdoors was hostile.  held me hostage.  held my dog hostage.  he got into xmas eve pot roast garbage, which i'm thinking held onions, and had to go outside 5x in -10F to puke/poop.  and ace and i have our own apartment now, 2nd floor, on a busy street, so i must accompany him outside.  needless to say.  sucked.  thus my feeling sorry for myself after 7 consecutive days of confinement.  is this what democracy is all about?  wanting to be able to live your own life.  flesh this out but wanting to live your own life under the oppressive regime of cancer is similar.  and because i am alive in 2018, surviving cancer, am i living as my best self?

i'm doing my medium effort best self.  still married, but have my own place to spread my lungs and breathe.  got a job.  in therapy and on lifejuice which is probably why i can fucking blog, but is this it?  am i living my best life?  i mean it is check, check, check, but ?

i got into a car accident on jan 4 2018.  not my vehicle as mine was towed away by make a wish foundation thanksgiving 2017.  no this was a loaner, from a dear friend.  which makes it worse.  my mother after much sympathy says "well you should feel bad".  sums up my adolesence.  so yeah, fuck, i feel terrible.  now squared.  oh anne.  atleast i can get out every once and awhile and fuck shit up.  and go to the store.  and walk my dog.  and scoop processed goop out of a PLASTIC trash bag into individual 16 ounce PLASTIC "food" SCOOPS

did anne frank ever get a three day reprieve?  siesta?  did she get to go to a spa?  the grocery store?  a matinee?  fucking outside?  i dunno.  i should probably read her diary.  but it's her diary, like that's private.  i fucking hate the fuckface in chief.

i have the windows open and can hear birds chirping.  even though it's twenty something degrees outside, yes my windows are open.  it is a welcome sound.  jesus fucking christ.

you know how you're not aiming for a high, but you get high.  but then when you are aiming for a high, focused, and you geet high?  it's nice.

i haven't been high like this in a long time.  i've aimed, but not accomplished until now.

i awoke 540 am.  took my thyroid and hydrocodone.  an hour later i made a board, a fruit and cheese board.  opened a bottle of cabernet and queued up longmire.  i had the day off.

wow.  i just may eke out an existence in the short story section of society.  a lot is jammed in those 46 years i suppose.  but i for the first time am considering a future.  ish.  "oh baby it would mean so much to me. oh baby to buy you all the things you need for free.  when we're dreamin'.  for free.  need money.  every night before i sleep i find a ticket and win the lottery.  dollar bills swirreling around my head.  when we're dreaming.  let's do it.  you do it for free.  need money need money need money.  say my name free."  patti smith

yeah so ive been imbibing and being.  and i wanna be doing this, so this is an exercise.  i love my new office.  dad's buffet in the corner of my unicorn of an abode.

my husband and therefore my marriage has made navigating stage 4 melanoma a picnic.  like i can do this, it's way easier than being married.  i work at hyvee.  i collect $800/month disability.  i live in the unicorn of apartments.  my husband still provides me benefits, but that is not likely to last.  this blows?

i'm getting reacquainted with myself.  and she's good, she's good at the core.  but lost.  but also found.  simultaneously strong and weak.  i know i'm not the only one in the world or des moines, iowa that feels like this, where you wanna curl up in the fetal position and then take it to the streets, marching for the right to abort a fetus.

now it's guns.  and i am in the midst of more than separating from my husband.  and i'm still on lifejuice and dependent on my husband's insurance.  and i dunno what's next and i'm fucking scared.  i've done the hard work of getting my own place, getting a part-time job, all in the vein of working on myself and i thought my husband was doing the same.  but he wasn't.  he lied.

what would anne frank do?  what should i do?

my birthday is in one week.  i missed my quarterly scan because i felt it was going to bring bad news, and on top of everything else going on in my life, just this week, i couldn't face it.  makes me feel like a coward.  i'm just tired, and scared if i'm honest.  it's too much.  today feels less overwhelming than yesterday.  and i'm rescheduled.  but the last time i saw mo the specialist, he feared the cancer was in my brain, lying in wait.  so this week i couldn't take any more bad news.

i feel alive otherwise, but am i living my best self?  no.  i'm just living.  and am interested in more.

cancer is easier

cancer is easier than life.  cancer is easier because it provides focus.  demands focus.  provides a purpose, for everyone around you even if the person is clueless as to how to proceed with you with cancer, there is this underlying tug at your intentions informing you to do something, act in a certain way.

cancer is easier than life.  perhaps that's just how i feel.  i sincerely feel that way and cancer is/was a bitch.  A BITCH.  i think i'm struggling with some ptsd, and my marriage still has some tepid water in the bathtub but has basically all but swirled down the drain.  and i do not know how to proceed.  my insurance is with my husband, he is the primary provider of everything, food, shelter, health insurance and misery.

i began writing this post 6 months ago.  and life hasn't gotten any easier.  an update is i am facing scans tomorrow, which is always hard.  my marriage as far as i am concerned is over.  i used to think that maybe a little time apart would provide some space that might allow for my husband to see me as a human being and thereby have empathy for me as not only a human being but as a spouse.  but he inflicts harm and then says it is my fault for allowing it to happen.  well you see i believed him when he said he loved me and it is that love i thought he was displaying when i was really sick, and that love became the ether i was running on, so of course i've been hurt by the person who portended to love me.  but he set me straight.  he told me a week ago august 7th that he never loved me.  he thought it was the responsible thing to do, marry me and pretend.  that admission caused me great distress.  then 12 hours later he said it wasn't true and that he loved me.

he has nuked our marriage and then came back to the village and torched it.

all the while i'm trying to get my sea legs back to get on with my life.  i am shaken and freaked out and trying to make sense of this thing called life, and with the recent events in charlottesville and what looks like a potential civil war as well as a potential world war i am depressed.  i haven't left the house in three days.  there is a spot on my head where i had brain surgery last year that is sore and itchy.  scares the fuck out of me.  wanted to tell my husband, but he doesn't care.  and i fear that i have become a person that nobody wants to be around, because there is always something of a downer going on.  that or it is because my husband seemingly can't stand me, so i assume i am burdensome on others which is why i haven't shared in a long time.

but there is a glimmer of sunlight.  it is the realization that i am not alone.  i have some of the greatest friends and family.  even my husband remarked one time at a gathering, "you have some really great friends".  i do.  and i almost wrote i don't deserve them.  but that's not true.  what i've come to realize recently is that we are mirrors to eachother, and that most of the time good begets good.  and that i have been a good friend to most to receive such an outpouring of generosity and love back from my friends.  to you my dear friends, thank you.  i think it is part of why i am still here.  i have more to give you and to life.  i must be doing something right, because i am receiving that stranger love like no other, you know what i mean?  strangers that don't even know your story or even your name but are willing to go out of their way to help you.  i've had it in spades this week alone.  and it couldn't come at a better time.  a time of great uncertainty for me personally and for all of us collectively.

i am writing this because it makes me feel less alone and less overwhelmed, by seemingly putting things into perspective.  there's a lot of discord out there, but there is also a lot of love.  and i've seen and felt both lately.  now is not the time to insulate, or isolate and i am doing my damndest not to.  it is the reason for this post.  i had to get this out otherwise my fears would become reality, and i am stronger than that.  no more unnecessary suffering.  

so what if i have another brain tumor?  sigh.  i sure as shit hope not.

please takeaway from this the knowledge that i am slowly sculpting a new life for myself.  even though i feel like a toddler with adult problems, that include but are not limited to the following: a proclivity for too much drink and like of drugs; jobless; homeless, and a wicked case of adult onset post traumatic stress of cancer and husband attention defecit disorder.  here's a visual for you- picture a drunken peter dinklage pinballing off the walls.  except he'd probably get an oscar for it.

death is easier

i'm having a tough time.  i don't know if it is the realization that i could get off of this rollercoaster and walk around and check out other rides and maybe choose to get on one.  one that spins and makes you giggle.  but one you can get off, even if you have to get the carny's attention and it takes a few more go arounds before he understands that you want off the ride, you will eventually get off the ride.

it makes me think of benicio del toro's character laszlo from the movie based on hunter s. thompson's fear and loathing in las vegas, where laszlo is trippin' balls and he is on a merry go round in the hotel bar and he is trying to unload himself from it and he's hanging onto the bars and sticking his leg out feeling for solid ground.  that's how i feel.

i've had the hardest time writing about this, this no woman's land i'm in.  which the doctors would say you are living, and i'm guessing most people would agree, and i can see that, and i feel it and i'm fucking grateful.  i am.  but you see, i didn't make a secret pac with my god that if you let me live i will blobbity blah.  i faced death as an inevitability, as the only outcome of my cancer diagnosis.  but i am still here.  in fact my doctors have called me a miracle.  one of them said, not mo, my local oncologist that he has never seen a turnaround quite like it.  brings tears to my eyes.  i just don't quite know what to do with the news, with life.

my marriage seems to be the grand compromise.  my husband said something very important recently, that maybe he has cancer fatigue.  maybe he does.  maybe he gave me all that he had and how could i ask for more?  as my neurologist says after giving me brain news "does that make sense"?  i may just walk away from this ride, but something has to die and it may be my marriage.  you don't just get fingerbanged by the grim reaper and and walk away unscathed.  there's blood and pus and tears and scars and bills and neglect.  but goddammit there has to be more.  like a life.  a second chance at life.  and i want to do it a bit differently.

"crap your crap fuck your thoughts it's party time"- the mattoid

winter 2017

                                     

                                           lost planet

i dig winter.  i especially dig being out in it, i don't know if it is the landscape aesthetic i find appealing or the fact that noone else seems to be out in it, and i have the forests and rivers to myself.  i can call to the wild and laugh and slip and spin on the ice.  i feel alive in winter, always have.  but i've really felt alive this winter.  as if the bony hand of the grim reaper tugged at the mummified cloth i'd been swaddled in and like opening a shade on the window to greet the morning, zip i was suddenly unrolled-unzipped and all that was left was me naked and raw with mega scars outside and in.  but i also had this unbridled love for those near and dear to me.  especially for my mom and my husband whose love keeps me warm.

river coon

in fact i was so in love with my husband that i asked him if he would like to renew our vows on our 5th anniversary which is friday january 20.  i said that i'd really like to have his kids, walt and emma there as they've always expressed disappointment at not being at our small wedding.  i asked him this in november.  he clenched his teeth and sucked air through them and indicated doubt.  i was devastated.  it made me feel like he cared for me out of a sense of duty rather than love.  and i had fallen for my caretaker husband, not my husband.  but he didn't explain himself so i mistakenly took it as he was maybe hoping i wouldn't survive and he could be done with all this.

but he says that's not it, yet i'm still unclear as to what it is.  i can't help but think he's had his fill and wants a life unencumbered by disease and fear and the financial struggles that go along with this.  as i stated in my previous post i am just now getting a sense of the toll this has taken on those close to me, and for him especially it was devastating.

and this no evidence of disease or ned is brand fucking new, and maybe he needs sometime to let it soak in or shake it off?  i don't know.  i am really trying to be patient but feeling that good and in love, and then to be halted at the entrance gate to what i thought was the next chapter with all those feelings-SUCKED.  do you know how long it has been since i felt that good and in love?  maybe never.

river coon

just two days prior to my latest scan results of ned, i was with my husband in omaha participating in last rites over his dying aunt marge.  can you imagine?  i honestly thought well soon there will be a gathering around me where people will hopefully be telling jokes and not absolving me of my sins, as i thought i was a goner.

but here i am, rockin' like a hurricane, with a husband who may or may not wish to continue on life's journey with me.  which saddens me of course.  he doesn't owe me anything.  i just wanted the opportunity to participate in life with him sans side-effects or cancer and not have to rely so much on him.  i want the opportunity to care for him.

we all have our stuff.  my husband marty isn't baggage free, and my disease possibly exacerbated some of his ills around his baggage, or the bags got heavier due to neglect, because i was the focus.  whatever it is, it is being looked at.  and he is focusing on himself right now.  we are on a diet/fast which is a lot of no's-no caffeine, alcohol, sugar, dairy, wheat, eggs and news.  mostly a vegan diet for the month of january plus marty just completed a 3 day fast over this past holiday weekend, and i think it was very powerful for him, and i am very proud of him.

'big bottom talk about mud flaps my dog's got 'em'

what does this all mean?  it means my pants are falling off of me; and i will continue with this diet and exercise and meditating and journaling.  it means i'm gonna keep on keepin' on.  i'm going to participate in the women's march this saturday, not in dc but in dsm.  continue to go on long walks with this big dog, who by the way asked me if this picture made his butt look big?  i said yep, cuz da truf will set you free.  and i will do my best to keep beatin' my feet on the path of love.

trouble

i awoke to this song in my head.  my dreams the previous night provided the pathway for the song to kickstart my day.  simultaneously beautiful and sad and scary.  nothing new of course but considering my new circumstance, troubling.

i don't know who i am anymore.  i'm a bit lost and found.  i'm old and new.  i'm very fucking sensitive.  i'm happy and sad.  i'm a walking contradiction with a diploma in hand that says you can graduate if you just finish that one project.  just complete your thesis on immunotherapy and the diploma is yours as is your future.

but i never finished anything.  i have loads of big ideas but minimal follow through and my dream last night was that both my mom and husband had replaced me.  my mom had a new daughter she liked better, that seemed to impress her more and my husband had a new partner.  but all this was because i was supposed to be dead, but they didn't get the memo i was still alive and already traded me in.

i got into a physical fight with my mom, where i was threatening bodily harm.  it was completely upsetting to awaken from.  and my day has been colored by the dream.

eleven years ago i was helping my father care for his dying mother, my grandmother.  i stayed with her and tended to her as well as an amateur hospice granddaughter could.  i dipped the minty sponge lollipop in fresh water and swabbed her dry mouth with it.  i rubbed lotion into her dry skin.  i sat with her.  i talked with her and then to her.  this went on for weeks.  and as happens when the focus is on tending to the health of a loved one, your needs get ignored and suddenly there's no food or drink in the fridge to help sustain you while you are helping to sustain another.

i had no car at the time and it was lunchtime and i was hungry.  and i figured i would be gone 20 minutes tops.  so i hopped on my bike and got two tacos to go.  i was zip back in 20 minutes.  i walked in the house glanced into my grandma's room to check on her before heading to the kitchen.  she was dead.  i walked to the side of her bed cupped her hand and said "grandma".  she didn't respond.  i think her eyes were shut and the only sound was the oxygen pump mindlessly breathing life into a dead person's lungs.

i threw the tacos into the garbage, called my dad who was with clients and for some reason couldn't get away for another hour.  i call the number on the hospice business card, they too said it might be an hour before a crew could get to the house.

i returned to the room where my grandma's body was and sat next to her in the bed for awhile holding her hand.  then i opened all the windows in the house and poured myself a glass of wine and returned to her again and sat with her body singing the white stripes version of the burt bacharach song "i just don't know what to do with myself".  because it was all about me.

but it's not.  it's not all about me.

i'm just beginning to get a measure of the toll the past seven years has taken on everyone close to me. and fuck, it is overwhelming.  and because i'm in it do i have an objective perspective?  uh doubtful.

i came away from NED with this overwhelming love and gratitude towards my husband marty.  for all of his caretaking and the fact he married me knowing that the past two years could and did happen and yet he chose to be there by my side.  he is extremely good at it.  and my heart after the news exploded with love for him.  i can't recall ever feeling that way before, that in love.  it is the best i've ever felt in my lifetime.

i'm having the same gush of love and gratitude this morning for all my people.  the support from far and near.  it is overwhelming what i've/we've been through.  and i think i thought that i would 'POOF' go back to life as usual.  but what the fuck is that?  i know what it looked like before cancer, what my body looked like before edward scissorhands left scars big and small all over my torso, what it felt like to have jobs that i was passionate about, what it felt like to be independent.  what it felt like to not be in fight or flight mode.

so i'm just trying to make sense of it all.  chart a path.  but it is harder than i anticipated.

one day at a time.

know a good dentist?

yesterday was scan day with mo in iowa city.

NED.  no evidence of disease is what came out of mo's mouth yesterday.  my sister exclaimed "shut your face up!" from ventura, california when she heard the news.  and i had said "shut the front door" to mo in iowa city, iowa when i first heard the news.  and then as per usual i asked him to repeat it.  he did.  then he said there is about a 40% chance of late stage melanoma patients living disease free for 5 + years after beginning immunotherapy.  compared to 5% just two years ago pre-immunotherapy drugs getting the nod from the fda.

i feel like i'm in a dream.  and at an oncology oscar ceremony wearing a hospital gown and fran drescher calls my name so i'm up at the podium holding my golden statue of NED which is shaped like patrick swayze in dirty dancing where he is on his knees and his arms are in front of his body, but his palms are up giving the double bird.  and at the base of the award it reads "i fucked cancer and all i got was this lousy statue".  then i begin to give my speech which is cut short by kanye west jumping up on stage and saying kim kardashian should be receiving the award and not me.  i protest "she doesn't even have cancer kanye" then the orchestra starts playing cuz they gotta shut crazy down and it is live tv, so the only other words i'm able to get out are "i'd like to thank bristol meyer squibb" cut to the commercial for opdivo.

yes thank you giant pharmaceutical company for advancing your empires so that i get to stick around and watch ugly (in mind body and spirit) old white men represent what they believe is good for the good ol' us of yay!  i recommend that you don't watch.  i stopped watching the shit show about 9 months ago and gave birth to NED, so i highly recommend going on a media fast.  

it is just about 12 hours now since i heard the ned news, and it still hasn't fully sunk in.  i awoke at 4am full of ideas for the future.  i haven't allowed myself to do that in years.

but it isn't just the opdivo that got me here.  it is my tribe.  and since it is that time of year when indians- feather not dot should be grateful that they have anything at all and white men and women gorging themselves on turkey legs that never functioned as such because the turkey was too heavy to stand up, let alone run gobbling for their lives from the turkey cafo, are supposed to be grateful about things, i want you to know i too am grateful.

but it has nothing to do with the time of year.  at this time words cannot convey how humbled i am by the graciousness and beauty i've witnessed from my tribe over the years.  i intend to reinvent myself.  thus the 4am wake up call.  "paging nicole, nicole mcluen, get the fuck out of bed and go get you some life girl".

first thing on the agenda i gotta go to the dentist.  cuz when you're dying you don't go to the dentist. at least i chose not to.  second item.......???

oh btw i think the following is a conteneder for music to be played at my funeral.  i mean i still will have a funeral someday, just maybe not tomorrow.  i've had this album for 10 years and since leonard cohen died a few weeks ago it has been on heavy rotation in my head (cuz my cd is scratched to hell cuz i played the hell out of it).  it's actually how i came to know leonard cohen's repertoire.  i highly recommend the 2006 album it's leonard cohen -i'm your man, the documentary kind of sucks because i can't look at or listen to bono or the edge.  but the artists that sing his poetry are spectacular and the musicians backing them, wowzers.  if we ever drank together at my old apartment on 26th st. i bet we listened to it, and danced some.  it is a reminder of where i've been, and where i thought i was going and now i need some time to sit with that.

for marge, marty's aunt who is today in the process of dying.

my dystopia: farewell tour postponed

not many people have lived to tell their first-hand apocalyptic survivors tale.  some do, like malala.  that girl, just thinking about her makes me feel like i just had an adjustment at the chiropractor.  she just wants to go to school and i just want to stay alive long enough to see woody allen's first tv series on amazon starring miley cyrus.  i've turned into a toddler.

you know toddler behavior, it is what i picture ADD looks like, and for that matter feels like.  and that's what i thought i was experiencing- ADD.  i can't even pay attention to this long enough to dash off a whole post.  either i am benjamin buttoning waning to pupae phase or have busted the shackles of organizing my day with a to do list.  the latest version of me, the most recent edition doesn't have a to do list to tick off.  i have an intention list and find myself at the end of the day having gotten to most of it, but with no idea of how to explain this new process.  because i don't know myself anymore.  i had prepped for death.  i began a farewell journey,  i was steeling myself for death.  i bought stationery for fucksake.  i'm serious.

but now i'm alive.  i'm alive for now.  i feel like the girl who told the principal the grim reaper tried to finger-bang me in home ec.  that doesn't even make sense, but i am trying to illustrate a 15th century concept with a 20th century example of the boy who cried wolf.

i don't know if i necessarily feel that way 100%, but a little bit, enough to examine it here for a few paragraphs. you see i'm not supposed to be here.  but i am.  until i'm not.  this is the new normal.  immunotherapy bi-weekly "indefinetely" and all the trimmings that come with manipulating one's immune system.  which gratefully for the most part i am able to tolerate.  my dystopia.  except this is not an imaginary realm i live in, this is my reality my new normal.  i am a soldier on leave from the battles of the melanomas, but cannot leave because my body is the battlefield.  and like most survivors of high stakes stress, i am finding it difficult to reassimilate and make sense of it all.

but don't cry for me argentina just because i am a toddler who has baggage.  i just might live long enough to see the tv premiere of a writer, director and actor who married his toddler step-daughter, here's a sneak peek:

farewell tour part one: california

let's first begin with i've been here before.  good news followed by not so good news.  or shall i say one step forward two steps back.  and on and on and so on.  it is fucking exhausting.  so after my "i am a miracle" appointment with my oncologist mo, at the next visit i brought to his attention some new growths i had recently discovered at ground zero.  "trial" was brought up again and a ct scan was scheduled for two weeks from that day.  some of you may be asking why the hell not have a ct scan that very moment?  well there is a protocol and accuracy of the scan so close to treatment is ill advised.  just for sake of supporting that point is that i was sent to mo because a scan done within weeks of a treatment showed that the tumors weren't shrinking, they seemed to be gobbling the poison like miss pacman gobbling those dots and chasing those ghosts and instead of gaining points, my tumors seemingly gained in girth.  that's where mo enters into my life and my rickety carnival ride with stage 4 metastatic melanoma continues.  the kind of cancer that if you've been following this blog "i should be dead" from.

so when the word "trial" was again brought up, i knew in my gut that i wasn't interested.  first of all it involves ultra sound guided needles as long as your arm going into my abdomen and injecting the various tumors directly followed by the toxic chemo cocktail i've already been sick on and at an even higher dosage.  and this is a 12 week trial, so once a week someone would have to drive me two hours to this "treatment", and then two hours back.  plus as part of the trial, you must submit to alot of testing.  like a lab rat.  and there is no guarantee.  fuck that.  i've been sick.  i've been there and done that.  i fucking had brain surgery.  i've had 5 surgeries, radiation, and chemo.  i've lost my thyroid in the process and gained 50lbs.  i actually was ashamed of my weight gain and subsequent big girl panties, so much so that i was giving myself a hard time about being too fat to die, just let me live long enough to lose 10lbs before i die.  i thought that.  that is a sad state of affairs.

but mo discovered my hypothyroid condition and has since corrected it and i've lost 35lbs and haven't felt this good in years, fucking years.  do you know how long that is to not feel well?  let me tell you from first hand experience, it is mind numbingly long.  it makes you crazy.  it is a feeling i do not wish to endure for one more minute.  and the idea of making myself sicker to buy time for the unknown future is not something i am willing to subject myself to.  and i've arrived at this definitive choice through a lot of soul searching, discussions about dying, discussions about living, reading various books about dying and living, a lot of gazing out the window and meditating on what is important in life.

and what is important in life for me is to be able to live life without pain and fear.  life for me is having the energy and stamina, hell the inclination to eat, drink, fuck my husband, travel, garden, walk our dog, love my friends and family by visiting them, not the other way around where folks visit and i am too sick to get off the blue lagoon, and through no fault of the visitor i feel as if i am an exhibit at the zoo and people come and gaze at me through the bars, those bars metaphorically being the barrier that separates life from death, and me being on the death side.  then unconsciously the visitor inevitably conveys the cancer pity face.  i can't take that face anymore.

this is where i've spent the past two years, and unlike brooke shields i am not frolicking in the surf and fruitfully fucking a sandy blonde boy who is a shitty actor.   nope my blue lagoon is a sofa.  and i want off and you know what?  i got off the couch.

when i heard the word trial again, i knew the jig was up.  i knew that i haven't felt this good in years and that i had two weeks to begin making my farewell rounds.  my husband heard me out and we went to california.  the main reason for the trip to the coast being that my sister and her family had just moved to ventura from valley city, north dakota.  ventura is just south of santa barbara.  it is known as the "riviera of the u.s."  quite the opposite of north dakota.   but i also got to see a couple of very old and dear friends too, and all the wonderful mini-me's they've created.

the time i got to spend with everyone was life affirming and the ocean, ahh the ocean, transformative. but i will get back to that.  after three days with my sister and her family it was time to say goodbye, and believe me i didn't want to.  but i did.  but not before i rode bikes with my niece to the beach to greet the morning:

we said goodbye and needless to say i was catatonic afterwards.  i am crying now remembering it.  marty just drove, we ended up in the hills in ojai at a county park.  we didn't speak.  we then found a room along the coast and the next morning i awoke to the fog horn sounding and dressed and took myself down to the beach.  i was transfixed by the sound and smell and feel of the ocean.  goddamn that sound and feel of the water is the best treatment i've had in years.  i've never  in recent memory felt better than i did next to the ocean.

we returned around midnight exactly one week after we left, and the next morning my dad picked me up to take me to iowa city to have a ct scan and consult with mo and chemo if it warranted.  i wanted to postpone the inevitable, deny that the tumors were unaffected by the current treatment so i wrestled with canceling the appointment.  i was travel weary physically and mentally.  i was steeling myself for the bad news and then prepared to say no to the trial.

what i was not prepared for was this: "your scan looks great, the tumors are shrinking, we will continue with chemo every two weeks, which you can do in des moines, just come back here for pictures in three months".

i was speechless.  except for "what about the new growths?"  he said those are old growths that we didn't pick up because they were lost in belly fat.  and we can tell that they've been there and are shrinking because of the scar tissue left behind after the tumor shrinks.  every tumor has shrunk by 50% since my last scan.  i said "so what i thought was a new tumor, and you thought was a new tumor too was in fact an old tumor but palpable because i had lost so much weight?" it was as if i had just seen my vagina for the first time after weight loss surgery.

are you fucking kidding me?  i was too fat to notice a tumor?  i shared with the docs that i had just returned from a farewell tour.  then i cried.  then my dad squeezed my knee and with tears in his eyes he said "this is such great news".  mo said i have more trips ahead of me and they are just trips, not farewell trips.

trips shmips.  i wanna move to the coast.  i want to be in a place that has the ocean, medical marijuana and is a right to die state.  and i think my husband is interested in helping us realize that goal.  this trip to the west coast to see friends and family offered up more than just seeing those that i love.  it granted me perspective on my life, which is i do not wish to die in my home in des moines.

the prospect of hospicing at our current address depresses me.  and it is because that is what i've already been doing for the past two years, i've been on the blue lagoon in my own hospice, and i've got to get the fuck out of here.  and so i will end this post where i began, i've been here before.  good news followed by bad news, and i know i am living with a terminal disease.  but the operative word here now is living.  and i wish to be able to start living a new chapter near an actual blue lagoon.  stay tuned.

that's my husband, muy guapo for soon to be 54 years old..............

vodkasodaburg

did they say "i went home with a mulatto?"

please give these ladies a look, made me smile and the second time around i was able to follow it a bit closer.  i don't know it felt very familiar to me, like i could've written similar lyrics.

this is from their bio on birdcloudamerica.com

Birdcloud is Jasmin Kaset and Makenzie Green, a pair who met in a place called  Murfreesboro and who, since 2009, have used things like booze and sacrilege to make very modern country music. The duo write songs about what Sarah Palin deemed “the real America,” that unsung republic of countrified interstices stretching from coast to coast between cities. Kaset and Green’s America is a nation of indulgent reprobates and boastful imbeciles, laughing maniacs and horny high school dropouts— the desperate, absurd place we all inhabit in one way or another. The band’s music is the ravenous id of today’s commercial country sound, and in place of the pandering and polished banality of Nashville’s Music Row is a savagely honest depiction of “real Americans,” where a teenage evangelical designates her vagina (alone among her orifices) to Christ; a Desert Storm veteran dispenses ancient wisdom while driving drunk and toppling birdbaths in the suburbs; a coked up blackout drunk on a spree fellates a rodeo clown and tells her friend’s children that Santa doesn’t exist. These characters are characters in both senses of the word: 1) eccentrics with notoriously outsized personalities, as well as 2) complexly three-dimensional literary creations. The complicated sensation of listening to Birdcloud’s music—the simultaneous urge to laugh, vomit, and maybe break down and cry a little at how familiar and sad and true it all is—has won the band fans across the lower 48, stupefying and sickening audiences in equal measure.

thanks doug stanhope for turning me onto this band- ladies and gentlemen Birdcloud-

and then there's this one called "problems"

my kind of ladies.

bob seger, mowing the lawn and miracles

frickin' seger got me.  got me in the car driving with my windows down and trying to find a hit i could sing along to, and frickin seger's night moves comes on and fuck me runnin' if i didn't get nostalgic.

not for the song or seger but just for the feeling of running wild and free.  when all you had to do was make sure you had a clean shirt for work the next day.  oh night moves.  i started this post days ago, sick with side effects from my last immunotherapy, plus suffering withdrawal from oxy that i thought i had properly tapered down, but knew something was amiss when the ONLY comfortable position i could find relief was to be in a push-up position with my hands on the ground, shoulder width apart and my feet on a yoga ball.  talk about night fuckin' moves, you simply cannot sleep in that position.  so i had my husband dress up like a zoo keeper or a game warden in an animal sanctuary and put me down- shoot me with a tranquilizer dart of 10mg of valium and an edible at 3am after zero sleep because i was so fucking  sick and uncomfortable.  i awoke to him kissing me goodbye at 7am on his way to work- i was curled up on the front porch swing where i had finally just passed out.

i had an appointment with mo for a consult and more poison in two days.  he said "nope" to poison and instead pumped me full of saline to get me back on track and put me back on the killerz aka oxy but a much lower dosage.  then he made me return two days later for an mri of my brain and then a consult.

i make the trip solo for the mri, take a valium prior to the scan, the tech asks me if there is any particular music i'd like to listen to, i say nina simone please, she asks if i would like a warmed blanket and a towel over my eyes, i say yes.  20 minutes later i am in mo's office.

he says "the mri looks great"

i say "that's good to hear, the surgery worked then"

mo says "yes, in conjunction with the immunotherapy it would seem so.  you should be dead."

i say, "you mean because i would be dead if we hadn't found the brain tumor"

mo says "no, melanoma metastasis to the brain usually means certain death"

i say "wait, what?"

he repeated, "melanoma metastasis to the brain usually means certain death but your body is responding to the immunotherapy and you are in no man's land, you are in uncharted territory, you my dear are a miracle."

i'm just guessing my face conveyed confusion, and i say "i'm a miracle?"

mo said "say it again"

i said "i am a miracle?"

mo said "say it again"

i say "i am a miracle"

he walked over to me, i stood up we shook hands and half hugged and smiled at eachother.

i sat back down and the room was silent and i said "fuckin' A"

and mo smiled and said "i like you"

and i said "i like you too"

so i left the exam room with this information and made it to the restroom just before the big ugly oncology waiting room, and i cried and cried.  tears of complete shock and joy.  i'm sure those in the waiting room thought i had just been given terrible news, but au contraire.  so i made a few phone calls and lit out for a pre-arranged jaunt through the countryside to see some of my favorite people.  i stopped and had a beautiful afternoon with a dear friend of mine in cedar bluffs where we dipped our toes into the cedar river from her dock and ate cherries and drank a lovely bottle of rose.

  

i then shimmy-shammed further north towards the woods falcon farm where i've done nothing but soak up the sounds of the countryside; basked in the rays of the moon which is waxing like i thought my tumors were.  here is a pic of the moon at gloaming and a little garden nymph:

i've delighted in the lightening bugs dance in the fields; eaten good food; laughed; slept like a baby;  saw my first ever humingbird nest:

if you make a fist that's about the size of it, the nest is to the right and center in the above pic.  and last night for the first time in months, well probably more like years i went to bed looking forward to today.  because today i am going to pick cherries and make my pops and pete something for fathers' day tomorrow:

i am actually pleased i have more to do than just make sure i have a clean shirt to go to work in today. and as far as night moves go, if i recall correctly, i recall sitting on the can the morning after and replaying the night's before moves in my fuzzy head and it was more often than not cringe-worthy.  so thanks but no thanks seger.

but i do wish to say thanks to all my friends and family who mean more to me than words can convey.  may you have a wonderful weekend, and i hope you can get out and enjoy tthe delights of nature.  the pictures of the morning glory and hollyhock were taken in our garden last week.  and i suppose i should leave you with one last pic that has a little more spunk to it, a selfie i took the day after i was pumped full of saline and feeling good, i call it melanoma mows the lawn- dig it:

identity and shapeshifting

i started to think about this blog, well not only this fucking blog, but thinking about my life- and in terms of this blog now that i have some breathing room, who am i if i'm not the youngish woman preparing to die?  and what do i have to write about?

do i write about how i made my husband laugh while we were riding bikes side by side yesterday and i was briefly thinking about the race for the white house and i said to marty "what type of dumbass would want to be the leader of a bunch of dumbasses?"

there have been moments in the past couple of weeks that have made me wonder is this all there is?  it's usually when i'm doing dishes, and it feels endless, and i'm thinking is this why i'm so grateful that life has been breathed back into me and i now have the opportunity to live just like every other living folk?  i get to do dishes and scrub the toilet and stand in line at the grocery store and yell "cunt" in traffic and mow the fucking lawn and listen to all the other neighbors insipid leaf blowers and mowers and fold laundry and fight over the remote?  i mean is that all there is?

of course there is more to life?  right?  i mean you just have to do the daily dread, well daily and then for about two weeks out of every year there are moments that are transformative, like driving into yosemite national park for the first time and for two minutes you get to pretend you are the first human to ever lay eyes on such a wonder and then like clockwork a tourist bus passes by blocking your view and belches diesel exhaust into your face.  but boy that was some two minutes.  i've hung onto that feeling.  i guess that's what you have to do.  you have to hang onto those moments otherwise you get bogged down in the minutae of the bullshit of the daily dread.

i also hang onto moments like i had with my new doc mo.  but it has been so strange because i know that he shared with me the possibility of remission, but i am back on chemo and some of the usual side effects got me late in the day yesterday, memorial day, and so it is easy to forget the good news, easy to slip back into the old skin of fear and the sadness that seems to be fear's travel companion.  i am on this pendulum swinging back and forth between dying and death and life and breath.  and it is fucking extreme.  a complete mind fuck and it is taking a toll.  but that's life, sings frank and don't pay the ferryman, don't even fix a price...... until he gets you to the other side says de burgh.

  

so i must be vigilant about what i will allow to take me down, because if i've been battling stage 4 cancer since forever then why in the fuck would i allow the minutiae of life to take me down?  i mean come on, snap the fuck out of it.  so what if there are crumbs on the counter?  right?  donald trump could be king ass of all the dumbasses or the pantsuit could be queen of dumbasses from sea to oil slick sea and i could die of melanoma yesterday.  that's why i gotta get my house in order which is my mind-body and soul cleaned up and spit-shined and ready for all the big and little things that sometimes happen to everyone, but on occasion are uniquely mine.

i mentioned earlier that marty and i were on bikes yesterday, we were riding to a picnic we had been invited to and it was being held by our friends' amy and dan whom we don't see a lot but when we do i sure dig them.  anyway amy is one of the reasons i am posting this morning.  she was showing us her art studio and talking about a show she had called "Shapeshifter-  The Art of Family Tragedy and How to be Awesome Anyway" and showing us pieces from the show, and they are so cool.  she does collage and had some of the pieces to share and they are needless to say powerful and spectacular.  

one of the pieces is a letter from her grandmother layered over amy in a bikini and what look like black frye biker boots and amy is tattooed and it is framed in an old beer sign so it is backlit and the letter from her grandma (and i am paraphrasing and sharing from memory which is not what it once was these days) is telling amy that only an insecure young lady would ink herself up and color her hair and by not conforming to societal expectations amy couldn't and shouldn't expect to be valued by others, let alone make much of a contribution to life.  i mean a really shitty letter that amy didn't allow to get to her, in fact i believe she said it made her laugh, and instead made art from it.  She superimposed a picture of herself over those words meant to tear her down essentially chokeholding the life out of what could've been a shitty mantra she might've told herself day in and day out for the rest of her life- that she would never amount to anything if she continued being the person she is, and instead became this beautiful person who is many things a mother, an artist, a wife and a truly interesting human being.

but that's not all there is peggy lee, she then gave me a framed piece from that same show, it felt like she knew i was going to be there and that she had that piece in mind for me.  that due to my circumstances the theme of that particular suited the piece she gifted me.  

so i intend to keep writing, to continue to explore life and stop and look up, smell that flower, kiss my husband, squeeze my dog, share my shiz on this blog, try to be as good a friend as my friends have been to me, and to be a decent, compassionate human being and yes hopefully less of a dumbass, and figure out "how to be awesome anyway" despite my cancer and despite all the daily dread and minutiae.  because there has to be more than just that, cancer and minutiae.  and i do know that there is, but i just wish i didn't have to slog through so much dumbass to just to catch glimpses of the beauty and power of life.  but i will, i will keep on sloggin'.

if you are interested this is a short about amy's work for that show "Shapeshifter- The Art of Family Tragedy and How to be Awesome Anyway"  .

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.