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'.