I am officially in remission. there were no signs of any residual cancer anywhere in me and uh, really that’s all there is to that. I have to meet with a radiation oncologist to discuss radiation therapy if there is even any need at all, which I hope he says there is not.
So, you know…good news. I apologise for keeping this news to myself for so long, not having chemo and it’s side effects has made life…enjoyable for the first time in a long time and that’s most of what I’ve been doing.
I went for treatment number ten last tuesday and was informed that my counts had dropped severely from the day before and was given a shot and sent home, told to come back the following day.
The next day after waiting what seemed like forever to get in the back to get chemo, upon sitting in the chair, while I waited to be hooked up and what have you, the head nurse came in after receiving my lab work from a few minutes prior, that I could have received the treatment tuesday as they had gotten a bad draw and the numbers were not accurate, real smooth. I slept through it.
This was the easiest of all of them, the only real side effects of any degree that I noticed were that my throat hurt for a lot longer than usual and I can definitely tell that it is effecting my immune system overall more than previous ones, which is all that I understand is to be expected at this point.
I’ve had an incredibly terrible time with sleep since around that time, I have no idea why, I can never fall asleep when I want to and end up falling asleep when I don’t want to, without even realizing it, and continuing to perpetuate the cycle of not sleeping enough at the most awkward times.
So where it stands right now is that I have two treatments left, the first of which I will receive next Tuesday, and the next one, two tuesdays after that. I need to go around and gather my records and finish packing. Nineteen or Twenty days left of this. Thank God.
Every time that I consider something in the sense of being more than halfway through I am for some reason drawn back to a line from the terribly cheap film, “Falling Down,” the movie where Michael Douglas loses it and starts on some sort of ill-fated mission and fights back against all the bullshit that he sees in the world. I can’t say for sure that this battle has been anything near what the basis of that film at all, but the line where he describes the “point of no return” always comes to the forefront of my mind - “That’s the point in a journey where it’s longer to go back to the beginning.”
So - five more, five more, five more and then four more, three more, two more, one more. Oh it is starting to feel so much more real, I am starting to feel so much more towards the alive side of living, I am excited to get over this as quickly as possible. I was told that treatments number seven and eight were the worst and so far I have no reason to believe that that will be true for me. My hair is hanging in there, I thank the Italian genes in me for that.
Toughing it out, guys.
atta boy, ativan.
back again, baclofen?
vicodin, vicodon’t.
ambient ambien.
no pain, no gain, lidocaine!
the hilarious thing is that what is really the best cure for all of the things that they are prescribing me all of this garbage for is popsciles, so most of the time, i just eat a popsicle and my sore throat goes away, the pain in my neck and upper back, goes away.
if i could ever force myself to pack a bowl and deal with what would conventionally be considered the fun side effects of smoking pot, i would most definitely not be in much pain at all, i’d just be high and i hate being high. oh well, popsicles, right?
at any rate, listen, i’ve been very apathetic about posting here in the past few weeks, i had a cold and was in the hospital for 4 days about 2-3 weeks ago and that wasn’t the most fun or enlightening of experiences. i changed my clothes and rethreaded my IV in and out of the pump and re-programmed the pump when i was done, because i was so tired of the oversized gown and the gym pants. i keep asking for child gowns and i keep being denied. oh well, here’s hoping i never need to go back there again.
yesterday was the halfway point of treatment sessions, and hopefully i will be done by october 20th, and be able to be out of here by my deadline of november 1st and back in rhode island on november 5th. currently trying to figure out what thoughts need to be discussed between the new oncology office there and the insurance company and myself and what have you. adult problems.
i figure that for every strand of hair i lose, i lose a strand of mind, too. that’s a good way to look at it, right? i mean, those roots have to go somewhere and if not directly into my brain and eventually feeding into the brain stem and down my spine and distributed through out my body from there, then where, right? right.
i’ve decided that there is probably simply more information that i’d like to retain than there is time to retain all of it. given my current awkward state of mind i figure that now is a good time be reading all that i can about conspiracy theories, the supernatural, and about some completely out of this world religions. what better time to read the mind blowing stuff than when my mind is being blown by all the shit being injected into me every other week. yeah?
anyway. physically doing better with this most current chemo treatment than i have with all of the previous ones, i think that’s a good sign and i attribute a fair amount of that to my better diet the past few weeks, i’m fighting the garbage parts of the stuff that is fighting the garbage in me, that’s some bizarre form of progression.
in one final burst of exhausted delusional garble - julie london’s voice, yes. so good. if someone could have just put her and morrissey in a recording studio for a few minutes, think of what could be.
long of the short of it is, i am doing better - but things are just unavoidably and unfamiliarly strange.
oh, and zines, well…trying to compile everything in order. the idea is that one will be decently focused on the aspects of life with cancer and the other will be a sort of other mental wanderings and events leading up to/non-relevant events since. there’s just a lot to weed through, the cancer one will be able to be purchased individually, and you will be able to buy both together for a more convenient price with similar shipping to that of the purchase of just one.
I had my fifth treatment of chemo today, first in the new port, second through a port overall. I currently feel like I am constantly at the, “uh oh” part of the process of vomiting. It went a lot better than I thought it would, actually - and my levels are way way way up from where they were. I think my doctor may be changing my over to neulasta instead of neupogen - because of the pain that I get from the neupogen.
I read a lot more of Journey To The End Of The Night during the session, which took a little longer than usual because they were really busy - I’ve spent way too long on this book and I’m ready to move on to more of the books that I got from the library instead of this. Can’t read anymore Celine until I have finished this, nope, can not, will not. I later took a nap using the book as a pillow because I didn’t get a pillow in my chair.
I was also pretty reasonably sure that Anna Karina was in chemo across from me today. She was a little too American, though and kind of dressed a little less than what I’d imagine Karina would dress.
Anyway, 7 more to go and I’ve noticed that the attitudes of the staff, specifically my oncologist, have changed from this “uphill battle” type of attitude to an extremely optimistic, “you are ALMOST done” type of attitude. I will not feel like I am almost done until the ratio of completed and yet to be completed sessions has more in column A than it does in column B.
That being said, my hair is falling out at a more rapid pace, though other than the thick layer of it all over everything that I encounter - it is hardly noticable. I was under the impression that having used T-Gel had helped a little bit, but now I’m not so sure. Would just like to get things a little more evened out, get this over with, and get back to Rhode Island. I have zero to negative interest in how much that could potentially rub anyone the wrong way and/or “mess up my life” - tell that to the cancer.
seven more sessions.
three and a half more months.
fourteen more weeks.
ninety-eight more days.
My picc line stopped working a few weeks ago - my last chemo treatment was taken through a peripheral IV. I will be having a new port placed by a surgeon in an operating room on Tuesday (as opposed to previously when it was done by a radiologist in a radiology room that was not a fully sterile environment.) I have chemo that Thursday and I pretty much expect to be out of functioning commission til the start of the following business week.
I had a lot to do this week and have had a lot of trouble sleeping so I’ve pretty much stayed in bed a lot and away from the computer - unfortunately this sets me back a little bit on the zine production. However, I will be working on these when I return to normality after the procedure and chemo.
I have received all of your e-mails and the one random donation. I will respond soon with complete details and will be mailing out zines as soon as I can get them completed. Having seen a lot of zines and having previously self-published one small run myself a few years ago; I have compiled in my head a lot of things that will hopefully make these really nice and worth what you pay for them in production quality - I apologise that I can not say the same for the quality of the words that will be printed on them.
The benefit show is tomorrow at the Skatepark of Tampa at 6 PM. If it is relevant to your musical tastes and you can make it out, it will be a really great event. There will be some oreo cupcakes, some adult beverages, and at least one good band is playing - when the show is over Ybor City is only a stones throw away and you can go party at any number of your favorite clubs or restaurants ( I will not be, because I can’t and don’t want to. ) Can you think of a better way to spend a Saturday night? I will be speaking very breifly before Until The End plays their first show in 4 years and first ever show in Tampa.
That’s all I’ve got, need to get to sleep - I am only accidentally awake right now.
As much as I try not to - I find myself standing alone, staring at various things, the stars, the moon, clouds, trees, plants, rusted spots on rusted things, cracks in concrete, all…particles of everything - and I ask myself, “Why me?”
Act and be kind.
For the purposes of this world, believe
For the purposes of the next, the only, the Vast and All world, believe.
For the purposes of All, be you God.
If you understand this, you are God; if you do not understand this, you are God; if you are not God, you dont exist; if you dont exist, nothing eixsts; if nothing exists, all, everything exists anyhow; it makes no difference whether I, or noeither of us, exist; it makes no difference to say “God exists” or “God doesnt exist”; it makes no difference whether this is understood or not; it makes no difference whether you are, or are not he who is God; whether God is or isnt; whether he is all, or not all; whether he is all, or nothing at all; it makes no difference, difference, and the make of difference. For the purposes of this world, it makes no difference whether you believe in All or do not believe in God, all; in Truth, Death; it will happen anyway, but only as a vision, and it will only seem to happen, and it wont really happen, because you, it, and all things, and all conceptions of you, it, and all things, are but a visionary flower in the air. Since it’s all in the mind, all in the emptiness of all, that it will or will not happen, that you will recognize yourself as God, or not.
