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.