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: