i lost weight!

and the tumors shrunk.  my friend megan said this is the one time when shrinkage is a good thing.  but let me share with ye how i got here.  it ain't pretty.  at one of the lower points of my six days of being severely sick, i was on the couch and my sweet husband was working a second job roofing, and had left me with anything i might've needed within arms length.

it looked like a beautiful autumnlike saturday, and as mentioned i am in the supine position on the couch under three heavy blankets in the throes of a teeth chattering chill whose icy grasp i was a slave.  so i'm freezing and shaking and the doorbell rings.  i yell "who is it?" and ace is barking, the front door is open so the screendoor is the door this person is ringing, and is not answering me.  doorbell rings again.  ace barking, i know it's a stranger cuz ace is barking so "who the fuck is it?" i yell.  doorbell rings again and i scream "get the fuck outta here".

the cold snaps were followed by hot flashes.  i had big red spots covering my arms and legs that were deep tissue bruises.  i threw up so hard that i peed my pants, when i told my husband what had happened he said "i don't think you should beat yourself up for it", i said "i'm not this is just a public service announcement, there are some soiled pants in the bano".  each day i was sick there was some surprise symptom that would rear its ugly head, like one day i had shooting pain in my ears, then ringing in my ears for hours.  but my favorite was hallucination day.  i could see all of my veins and my blood was the color of fuschia.  i saw a lizard and walls would move closer.  oh yeah then i had some awful auditory hallucinations that sounded like a beast, it sounded like the poison my oncologist prescribed me, if it could talk.

my oncologist took me off the $18,000.00 meds for a week due to the severe side effects but wants to visit tomorrow about going back on one of them as a process of elimination to discover which one is responsible for the side effects, lower the dosage, then continue.  i have no interest in feeling like i felt for the past week even for 5 minutes.  what am i a lab rat?  the fact it did its job but nearly killed me in the process blows.  because i want to live, and it would seem that the cancer doesn't thrive under the influence of these drugs.  but then again neither do i.

i have continued with herbal supplements and fungi, been doing astragalus to boost immunity, zeolites to pull shitty toxins out of my system, milk thistle helps to clean out the liver, black cohosh for lady changes and siberian chaga mushrooms for super-human powers and trametes versicolor aka turkey-tail mushrooms they specifically target cancer cells and in some incidences reduce tumors.  so i'm hoping for a middle ground approach and less scorched earth, something that is less toxic and in combination with some complementary and alternative medicines will allow me to walk on this earth for a few more days. 

i want to say some thank yous. 

to my husband, you are strong, courageous and thoughtful and i cannot imagine surviving this past week without you.  i am so very grateful for you.  i am also grateful for my family and friends each lending your support in beautiful ways.  the edibles from colorado were a lifesaver last week, thanks ellie and hans.  and thanks lora for a clean house. and david thank you for the produce, and your time and the too spicy soup.  winking butternut squash crab slinging hot peppers in its claw emoji.  and to my wickedly funny sister kate, she sent me this text: "meds ugh, can't live with them can't live without them JK".  

good day

today is another good day.  the good days started yesterday.  why?  i think it may have something to do with the fact the insurance company approved my request for lifesaving meds last thursday and because i have great friends who pushed me to scream at the folks in charge of distributing the meds so i was able to commence taking them saturday instead of waiting until yesterday (wednesday).

it is an ugly story, in that bureaucracy and people who don't have your back are in charge of your fate, ugly story.  which included my oncology nurse and a pharmacy tech from flint, michigan.  that is unless you kick them in the crotch or clang your cowbell in their ear while they sleep, which is what my friend rendy suggested or rather demanded i do.  which pissed me off because i had done all i thought i could do, i got the insurance to cover the meds for a $30 co-pay but because of labor day the delivery was going to be delayed one week.  i guess i was so happy that the expensive meds were covered and that i had already talked twice with the pharmacy regarding speeding up delivery but to no avail that i was somewhat ok with the delay.  but my body wasn't ok with the delay.  the cancer was metastisizing rapidly and i felt as if i was turning into a marble statue.

so i call rendy to tell her the mixed bag of good news but she wasn't havin' it, in fact she asked me who was advocating on my behalf because she knew i was in pain and exhausted and needed help, she knew i needed those meds and i needed help getting them.  so because of her and a previously planned trip to chicago (and the fact that the mail order pharmacy has a store in chicago) i made a tear-filled phone call to the pharmacy, i was able to begin taking my $18,571.00/month meds last saturday.  and i haven't felt this good in months.  fuckin' a charo.  

it's 3am thurs do you know where my copy of "die wise" is?

jesus.

oncologist thinks it could be an infection (per visit wed.).  which is what i had hoped was true last time, but was instead a fistful of cancer.  things i've never done:  been fisted,  robbed a bank, eaten at red lobster, spawned, read "one hundred years of solitude" in spanish, floated in the mediterranean, bought watering willy, had a coffee enema,  been party to a cleveland steamer, etc, etc......i'm straight trippin' boo.  i can't sleep past 3am, and when i go to sleep i've been hearing myself make this sound as i drift off and i can't shake it.  is it my death rattle?

it's 420pm where's my fucking pipe?

been home for a few hours post oncology consult after a morning scan and guess what?  yep the mel and me chronicle continues.  blows.  i knew it, but god dammit i want off this ride.

when i was a little girl about 10 or 11 my grandma on my mom's side started taking me on the double ferris wheel at the fair.  nobody else would go with her, because it's kinda scary, exhileratingly scary which is why i think she liked it.  i liked it because it was something only she and i shared.  she would rock the seat when we were stuck on the top wheel waiting for other fair goers to load and unload and that always made me white knuckle the safety bar and she would laugh.  sounds sadistic and it was, but it was also part of the fun.

after my grandma died of cancer, my mom and i were at the fair and she wanted to honor the tradition by accompanying me on the double ferris wheel.  i've never heard a human make those noises before.  my mom sounded like an opossum that was being cornered by animal control outside a chipotle at the mall.  it was all i could do to get the carny's attention.  we were on the part of the ride where the double ferris wheel is behaving like it is one big wheel, so we are sweeping past the carny where kggo is blasting and i'm leaning over the side of the basket waving my hand saying "excuse me" then whoosh up we go, more groaning, we arc then back down, "hello, excuse me", whoosh up arc then back down and as we are about to sweep past the carny i yell "help!" while making the international sign for your dead by sliding my index finger across my throat.  that got his attention.

it wasn't easy but i got us off the ride.  i don't think i'm getting off this ride of melanoma.  i can feel tumors growing inside of me, it is painful and scary as fuck.  we are still awaiting clearance from insurance for melanoma drugs.  and in the meantime i feel the weight of everyones concern, and the sadness in my father's voice was like a gut punch.  it has to be easier to have your child fall accidentally into the grand canyon than watch them die of cancer?  maybe why i'm saying that is....let's play the game would you rather.  would you rather die a slow death from a terminal disease OR trip and fall to your death from the north rim of the grand canyon?  um alex i will take grand canyon for $1000.

wastin' time

i received an e-mail yesterday asking me to sign a petition supporting the sale of ugly fruit.  apparently u.s. grocers throw out 25% of the fruit they receive because it is u g l y it ain't got no alibi, it ugly.  yeah yeah it ugly.  i signed it.  but it made me think about time and how i've wasted about 25% of my time on this planet.  wasted it on booze, boys, bloviating, tv, self loathing, hating james taylor, microsoft office excel, dead end jobs, pinterest, anger, and sweatin' the small stuff.  sweatin' the small stuff is such a time sucker.  my husband and i have spent too much time battling over small stuff that i am slightly embarrassed to admit that we have fought over kitchen mats, whether or not to see the movie lincoln, fan on or off at night, routes from a to b, what station to listen to in the car, how to chop an onion, whether or not my complimenting the salad meant i hated the tuna sitting next to the salad, ad infinitum ad nauseum.

so why the fuck should i waste any more time writing about how i regret wasting time?  how the fuck is that gonna help me?  it wont get me that time back.  god dammit whatta waste.  some advice from a dying gal, quit wasting your fucking time.

if there is any part of your day that you just tolerate then i highly recommend you do something to change that because that part of your day will one day become intolerable which turns into something else which morphs into a half-fucked fox in a forest fire of resentment and sometimes self-loathing becomes your companion and then you die from cancer.

i'm still reading the book "die wise" by stephen jenkinson and i just read the following on dying:

     "If you wrestle death, your labor makes a proper place for it.  If you fight death, there is no place    

      for it.  Death is defeat, the end of life.  Demonize death and you turn life into a factory-farm

      canola field: flat, hollowless, no place for mysterious things of substance to gather.  But come

      to your death as an angel to wrestle instead of an executioner to fight or flee from and you turn

      your dying into a question instead of an edict:  What shall my life mean?  What shall my time of

      dying be for?  What is it going to be like in that cottage of darkness?  If you work hard in your dying 

      days, the answer could be "Not like anything you've known."  Dying turns into something you

      live.  The trick here is that to be able to ask questions like that you have to know somewhere in

      your bones, that you will die.  When the time comes you have to know that you are dying.  That

      shift from the future tense to the present is a chasm that many people these days never cross, 

      never even see."

i'm writing this because i am in a fair amount of pain and am fairly certain that the cancer is back and not slow growing like i wrote about last month, but metastisizing rapidly in the same area it always has called home.  i have an oncology appointment today but it would be ridiculous for me to say that this is anything else but cancer, and that i am wrestling with death.  now where the fuck is my singlet?

if i didn't have a sense of humor while dying then it would be tough to reconcile my life with death.

yesterday was dave chappelle's birthday and someone compiled a list of chappelle's show sketches that are still relevant today and this one had me laughing and i certainly would never call watching a chappelle's show skit a waste of time:

"did you fall down and hit your head"?

i believe that the bullshit coming out of trump's mouth about women and the bullshit coming out of the mouths of all the love the fetus hate the child ilk and their spins and lies about planned parenthood  positions hillary perfectly to become all those haters worst nightmare- president.

i didn't want to vote for her, and have been lookin' at bernie sanders, but i have fucking had it with the anti-women vitriole that is so pervasive in the world.  had it.  stick a fork in me i'm done had it.  will consider voting for a presidential candidate just because she is pro-choice and has meat curtains, had it.

let's sit briefly with the idea of dying

my husband and i received a mixed bag of news from the oncologist last week.  melanoma has invaded another lymph node, but instead of recommending surgery there are drugs that in combination can halt the march of disease.  which i guess is good news?  the oncologist also said that i'm an anomaly because there were others diagnosed in 2009 with the same stage melanoma as me and they are dead and my melanoma thus far seems to be less aggressive (just like my libido and metabolism, ahem) and he said "i don't see you dying from this anytime soon".

which is good news.  great news.  fuckin' a.  some sort of smiley fuck-faced emoji.  especially because i thought death was imminent, a truly difficult pill to swallow and i wasn't sitting well with the accelerated inevitability of death.  but the shitty irony is that i have such an unhealthy relationship with death that i haven't been living, i've been paralyzed by my diagnosis and the slow march of the disease and each time i go under the knife my mind, body and soul is forever changed and thus my reality.  and i had zero coping skills, except with alcohol and drugs which is a form of palliative care.

but something shifted in me about two months ago, and i feel a tiny bit more comfortable in my skin.  couple that with the oncologist's words and i now have some breathing room.

inhale.  exhale.

literally in the midst of the shift in my thinking and the oncology appointment my husband had organized a trip to madison, wi to attend a talk by stephen jenkinson the founder of orphan wisdom and author of die wise.  a week before all this my husband sent me a link that said "i think this guy is right up your alley".  fuckin' a right.  may sound strange but it is the best gift i've ever gotten.

death changing.  i will write that again.  death changing.

so we traveled to wisconsin and stayed with friends in their beautiful home and made our way to madison where we sat in a hot unitarian church designed by frank lloyd wright, for three hours, endured five long songs sung acapella by women in comfortable shoes just to hear canada's willie nelson look alike talk dying.  (just to put this into perspective i walk out of movies for less).

jenkinson said almost right off the bat that grief is the antidote to depression and that in north america we put a finite time on grieving and if you grieve too long you are abnormal and how utterly fucked up that is.

he also said that in other cultures humans walk with death as their companions, some for decades some for years and in our culture we wait until a terminal diagnosis or a natural death to erupt and disrupt our lives and then we mostly go into a state of denial, some grieve, some medicate, then back to life as we know it without gleaning any sort of insight or education that could and would help us to live better more meaningful lives.

he discussed the root word of palliative which in latin is palliat, or cloaked.  and that the words palliative care, pall-bearer, and cast a pall over a crowd are all rooted in masking or cloaking the truth.  the truth being, you are fucking dying, there is a dead body in there, and don't be deceived.

i had a friend recently say to me that talking about death is too depressing.  so am i to face this alone?  pretend that it isn't happening?  stephen jenkinson compared the life altering experiences of death and birth, and that in our society we would never dream of telling a mother of a newborn to not alter her daily routine to accomodate the baby.  so why do we ask terminally ill humans to make like life is the same as before diagnosis?  that is part of what has been so fucked up for me.  i believe it is part of the reason why i've been paralyzed for the past two plus years.  i had no idea how to walk with death, let alone how to talk about death because i was supposed to continue on with my life as i knew it.  instead of grieving i was masking grief about dying with depression.

jenkinson said if the subject of death doesn't come up in daily conversation then that's what's abnormal.  i felt instant relief.  i've been given permission to look at this thing called death and talk about it, write about it, cry about it and just sit with it.  meanwhile it has breathed new life into me, and i feel forever changed.

i know i've just briefly touched on some of the more personally salient points from jenkinson's talk, and i hope to go more in depth in conversations with family and friends from here on out.  i am just 50 or so pages into his book die wise, and will likely continue to write about and talk about my life with death, not exclusively, but it is a part of me now.  i don't wish to die anytime soon.  but it's time to face the music, and talk the talk and walk the walk.  who fucking knows, maybe we can all learn something from this anomaly.

here's a band that my husband and i saw in kc this past spring.  she brought us both to tears as well as the dude i chatted with while waiting outside the bano for my husband at the end of the concert.  i said to the dude, "she is so powerful- i cried"  dude said, "i cried too", then my husband joined and he said "i teared up too".

thanks brittany from alabama shakes-

 

go suck it

steve king.

representative steve king (representative of what?  western iowa or a "big ball of hate" ?)  should be pimping trump this cycle, what with their shared rascist anti-immigration policy.

and now he's set his crosshairs on defending bigots' freedom to exercise their bigotry in the wake of the supreme courts ruling that gay marriage will be recognized nationally.  king ass says the ruling "unconstitutionally and indefensibly perverts the defintion of marriage" so he has proposed a resolution that businesses, religious institutions, cities and states and other close-minded like minded bigots should be "encouraged, empowered and protected to exercise their faith without fear of legal or government interference".

how in the world would selling a doughnut to a gay couple hurt the proprietor?  if it does isn't that more a perversion of capitalism than marriage?  if i'm around for the caucus in february i'm going to propose a resolution about steve king that i hope makes it to the state convention declaring steve king "king ass".