chemo and james taylor

i spent three hours today at the hospital being poked with needles and filled with poison to combat the melanoma tumors that i can feel still growing despite this being my second treatment.  go fuck yourself melanoma.

i recall cavalierly writing awhile back that i didn't wish to do chemo.  but i wish to be alive.  but the downside of life with cancer and chemo is that the life i have is quite a departure from the life i'm willing to subject myself to in order to stay alive.  and i have to reconcile that i am trading death for feeling queasy, peeing out my ass, fatigued and mostly bummed.  fair trade?  i guess.  for now.

i barely slept last night, i laid awake thinking about how sad it must be for my family to accompany me to the hospital.  and then i got sad.

but then i thought about how nice it is spending time with my family.  we've had conversations that are more honest than i probably would've ever had if i hadn't been diagnosed with cancer.  family members' that would never dine together due to break ups and divorce all gather at my table like we are all one great big family.  it's kind of nice.

and i consider my friends as family.  wow.  my friends have been generous with their time, their concern, their humor and their pocketbooks.  and i am humbled by you.  it makes me feel like maybe i'm not such a douche after all.  but i don't know how to repay your kindness other than to simply say thank you.

thank you.

today my dad accompanied me to treatment.  he drives a different route than my mom does when she accompanies me.  my dad just gets us there.  my mom acts like she forgets how to get there, everytime.  we've been going to the same hospital since 2009.

so my dad and i goto breakfast after treatment and i am able to choke down a little bit of food when a james taylor song comes over the loudspeaker.  and i leaned in and said to my dad, "if james taylor were here right now i'd stab him in the cheek with my fork, i fucking hate james taylor" and i pretended to stab myself in the cheek with my fork.

my dad looked at me, smiled and said "i wonder if that's genetic?  because i can't stand james taylor either."

 

it's a good day to be alive.

cum on ilene

new years day i awoke to that insipid ear worm of a shit song.  and again today groundhog's day.

2016 should be good as it started on a friday.  but so far it is fairly shitty.

scan in december showed good results results.  then a few weeks later i felt another tumor.  "we will have to amputate the left side of your torso but good news you don't really need your left side to live a rich and fulfilling life, you just need a side" said ben carson.

the chemo is fatiguing.  and edibles aren't notorious as a stimulant.  i need mama's lil' helper, i feel the need

so i've made it to caucus time in iowa.  jesus who to caucus for?  i'd rather caucus for potato ole's to be president and the shitty cheese sauce as vp than this lot of ego maniacs.  but i will caucus god dammit.  i upped my chemo because another tumor is on the rise.  what is also on the rise are crazy candidate ads vyying for votes.  huckabee's latest ad is nuts and left me speechless, huckabee actually took this ad down but other entities had already reported on it so here is an abbreviated version, it is a gem:

if i were to vote based on commercials it would be huckabee.  but i think we disagree on a lot of things.  but the truth of the matter in this primary season is the presidential race is bs.  local and state races matter more.  but less voters participate.  and now because of all the dark money allowable by law, we get a bunch of corporate schills and a bonus adult baby billionaire vyying for our vote.

and yet through all this i gotta deal with melanoma.  it used to be about once a year i'd have a scare and subsequent surgery.  now surgery is off the table as six weeks past my last surgery a tumor surfaced in the exact fucking spot where the surgeon operated.  so now i'm onto chemo and immunotherapy.  well the chemo worked for a minute until it didn't and now what felt like a marble last week is a racquetball in my groin which is affecting my gait and my non-existent sex life and i have bruising all over my inner thigh and i'm in pain and back on shitty painkillers.

i have a scan scheduled for today and of course i feel like it will see its' shadow, but aside from that there is a blizzard warning and the radioactive goo comes from omaha and due to weather the scan may not happen so i may have to be patient and wait another day or two.  fucking blows.

caucused last night.  kind of fun.  i caucused for baby boy bilionaire bloviator.  no i didn't.  i caucused for the candidate that has the potential to put an end to the testicle festival.  there have been 44 men who have occupied the oval office, that's 88 ball sacs.  sick of sacs.  also i will be 45 march 2nd, and well this election will decide who will be the 45th prez......so the lady won my vote, and my particular caucus.

i'm less and less involved with politics due to being more and more disillusioned by all the dark money in it.  i used to get off on it, not to mention i was kind of good at it.  in fact i was part of a piece on nbc back when i first got involved.  toot toot.  not that big of a deal but thought it was the appropriate time to share.

so consider doing something civic minded today:  help an old lady across the street, shovel your neighbors walk, or tea-bag an old man's ball sac.  so many options, so little time.

i don't work

so i don't got a case o' the mondays.  in case you do, this might put a little showpony in your step:

then later at home watch "town meeting" with a cocktail and a friend who likes to laugh with you.  i cried laughing when the skunk showed up.

thanks kit for sharing gayle with me.  she's the new badger.

this was hard to admit

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.

5 minutes, i will take it

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.

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.