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.
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-
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:
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'.
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.
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'.
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.
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.
