everybody has their own shit to deal with on a daily basis. everybody has super frickin' sensitive issues that are exercised daily or stuffed down deep too sensitive to be seen or heard by the stuffer let alone those close to the stuffer. i'm going to call it grief. those who exercise their grief daily might be doing one of two things: getting healthy or ruminating over the shit.
i thought i had made strides towards dealing with my super sensitive shit, that up until 10 minutes ago i didn't recognize as grief, i thought my shit was just this miasma i was having a hard time pushing through, and the miasma has become such a constant in my life that it has literally morphed into an accessory i wear, as well as a self defeating mantra i repeat over and over to myself that i am not worthy. i've struggled with this for a long time, "this" being self-loathing and the certainty i am not good enough. then tack on a struggling marriage and a terminal illness and some of my days are spent in the fetal position. this is hard to admit, but it is a revelation i feel compelled to share because fuck, enough is enough. and there better be a fucking leprechaun at the end of this black and blue rainbow.
i find it quite difficult to listen to anything cancer related. i resist it because i do not have the capacity to take in anymore. does that make me a stuffer? maybe, which is news to me. and as i mentioned before, 10 minutes prior to beginning this post i had finished listening to a fresh air segment about this accomplished oncology doctor who has experienced cancer himself as well as watched his own son die after spending 8 years inside a bubble because his immune system was gonezo. now that was some relatable shit. this oncologist DeVita has his own book but he also mentioned that his daughter wrote a book about her brother dying and i immediately looked it up and read a synopsis of the book and promptly began to sob. the book is Empty Room: Understanding Sibling Loss by Elizabeth DeVita-Raeburn. apparently she talks about how she didn't know how to grieve, and interviews others who have lost siblings and they discuss their losses. my brothers and sister's faces flashed before my eyes and like i said i began to sob. i don't know what it is that specifically triggered the tears to my eyes, but i'm fairly certain it is grief about the potential for loss, leaving my siblings behind, but also enduring loss, which in my recent studies is one expression of grief.
and i do believe that my self-loathing and sense of unworthiness are manifestations of not recognizing grief and then grieving. instead i experienced loss, maybe talked a little about it then stuffed it and washed it down with glasses and glasses of wine. thus turning that loss into a self-defeating energy, that occludes the genesis of grief and becomes a boil that turns into a second head that looks just like you but gives really bad advice and helps you make really poor decisions, especially if you ply it with lots of alcohol.
kind of like in the movie "how to get ahead in advertising", except his boil was the better fella
perhaps this is why my marriage is struggling. my husband has said he doesn't know how to grieve and he is most definetely a stuffer. but the revelation that i too may be a stuffer and that i have not recognized loss in my life, has led to the debilitating miasma that is my so called life. by not grieving i have made my life terrifically sad, does that make sense?
then i blame. i blame my husband. i blame cancer. i blame side effects. what if an easier path is to grieve and then learn to live with grief? recognize that what i'm feeling is as a result of unrecognized loss and not because my husband left crumbs on the counter. i mean seriously that sends me over the edge, not grieving may be the reason i get so fucking pissed in the car. yes i'm pissed because i'm dying but come on. i feel as if i've kind of come to terms with my death from melanoma, and in that understanding there is grief, wow, it is a multi-layered grief. and i thought it was healthy. but today i realize that grieving for your own death whilst not grieving for things you've lost in life is like counting on a cake shaped by a house of cards with icing on it to sustain you. there's nothing to eat, nothing to lean on.
fuck i feel better. i've got some new accessories i will add to my wardrobe, and will hopefully shed the old time sucker all too familiar self-loathing that's been disguised as a pearl choker. it ain't gonna be easy, but i'm ready to allow myself to grieve. actually i will insist.
i had a deliriously simple and wonderful five minutes yesterday late afternoon. i sliced a pear, carved off a few blobs of blue earth cheese, poured myself a glass of a dry white wine and took in the last rays of the gloaming and i gotta tell you, it made being alive seem like a worthy endeavor.
i believe i've mentioned that i've been reading the book "die wise", well in it jenkinson posits that with advances in medicine and palliative care people who should be dead are living. which means that the more time you extend your life the more time you spend dying and that the human brain has a really hard time wrapping its proverbial arms around that concept. so a person with a terminal illness, like me for example, i have stage iv melanoma that at times has rapidly metastisized like bigotry at a trump rally. but due to these "magic bullet" drugs (as my friend eric called them) i have more time living, but also more time dying.
which you would think would pave the way for mary tyler moore moments, spinning in circles, smiling and throwing my beret in the air. but my life has zero semblance to that sequence. each day i get up later and later. i am riddled with anxiety and i am really fucking angry. i am angry with people i love and care about. i am angry with neighbors i don't even know because their dog is in the middle of the street and might teach my dog a bad lesson. even though i love my husband i'm pissed that i got married because the institution of marriage sucks. i get so angry when i drive, i imagine swerving into people's cars who are talking on the phone, i yell cunt just three blocks after leaving my driveway. i am angry with myself for not having written the novel i have in mind.
so somedays i wish i was dead already. and i can't help but think being dead might just be easier for everyone. but what is that feeling? i know i'm not the only one in the world who has a terminal illness, and i'm fairly certain i'm not the only one who has these thoughts terminal illness or not. i mean how do people survive life? well simply put you don't. none of us does. but not everyone lives with this dark shadow of death draped over their daily lives, but maybe that's just it. the real magic bullet is to invite death over for a home cooked meal, and make a space for it instead of dodging it like i dodge bill collectors. but that seems too easy of a solution. because in my reality i have zero capacity for the daily shit life throws at you, which is why i yell cunt so easily. which is why i had a panic attack inside the MRI tube and had to abort the procedure after one horrible minute. and why was i having an MRI? to rule out any brain tumors that may be responsible for some dizziness i've been experiencing. but there's no room at the inn for that type of information. to potentially have to add brain tumors to the list is fucking overwhelming.
my mom has basically said that i oughta pull up my bootstraps and fake it 'til i make it. uh, ok. that's really helpful. then she always says that i should join a support group. which one:
so you've got cancer, now what?
driving with anger in your passenger seat, the jack nicholson therapy
it's 9am and you want a glass of wine, how to get to 10am
how not to rip people to shreds when they ask how you feel
how to roundhouse kick cancer pity faces right off their face
how to not lose it when asked to list all of your surgeries everytime you have a new procedure aka electronic medical records, have you heard of them?
terminal illness a trump card or keep it to yourself
five minutes. that five minutes yesterday was incredible. i've been having small moments of smiles lately, and believe you me, they have not gone unnoticed. here's to 10 minutes.
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".
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.
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.
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: