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'.