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Wednesday, June 20, 2012

Tic-tock......tic-tock.......

Quickie update...to get us all to present day......
Been doing real good handling/dealing with the pains associated with the chemo toxicity. No more on narcotics....still on the anti-seizure meds that are working to help keep the neuro pains down a bit....tweaked all the other meds and am now pretty much just taking what I need, when I need it.
Funny thing, right before the pains in my lower back and legs get real bad I get a "heads-up" warning with my tongue going numb and for sure more aware of the neuropathy to my fingers and lips.

"Chemo-Brain" has been giving me some big kine ass whoopings.....seems its the short term stuffs still that I have so much trouble with. Can not remember names of folks I meet  even a few minutes after I ask for a reminder. 
I know TWICE I saw a commercial for a movie I was interested in seeing, but for the life of me I can not remember the title, who is in it, or even what it's about.....I just know there is some movie out there I want to see........
You should see me at the bank trying to deal with transactions....
I am being taught to play chess.....that's comical !!!
Thankfully most folks around me have been patient with me and haven't seemed too annoyed by my repeated questions.

One day at a time......One foot in front of the other.....
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Had a great time camping at Kahana Bay last weekend with Alan, KenG and Moriah.



Was great to "escape" everything for a few days......days spent on the SUP boards cruising up the river, home made camping meals, bonfires on the beach at night. Great conversations, plenty of laughs and new memories........What LIFE is supposed to be about!!!

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Cruised at the hospital with Alan for a bit the Tuesday after camping then it was almost a WHOLE WEEK of NO doctors, NO nurses, NO hospitals, NO lab draws, NO..........well I wish I could say 
"NO CANCER"
Thing about having cancer is...... the shit is there first thing when you wake up in the morning and its right there when you lay your head down at night.....no matter what you do to "run from it" ......"ignore it" ....."have a day without it".....you CAN NOT
When packing for camping, make sure you pack your meds
When you pick up that heavy rock your going to use for the campfire don't forget about your port before you rest it on your chest (oh yah that buggah hurt!!)
The cuts on your feet and hands....ohhhhh better watch those close.
Hair seems to be growing back on the head, but still get plenty bald spots in the beard....and whens the goddam hair on my balls going start growing back????
The PAIN.....

But somehow I am learning to get past it, and the periods of not having a "constant reminder" get longer and longer..........
Had a great visit at the house near end of week from some of my favorite little folks Micaiah and Sarai



After my week of "no new medical interventions"......Monday was my Pet Scan/Cat Scan day....

These are being done now to see how the cancers responded to the chemotherapy....
How to put this experience to words.......
Even though I had one of the best friends I will ever know sitting at my side in the waiting area, once your name is called and your headed in your on your own.....for me it was bam right back to 
January 25, 2012.....
standing alone outside the emergency room doors to Castle Hospital ER....knowing that the moment I walked through those doors life would never be the same and feeling so very very alone......
You enter into the COLD room full of a bunch of strangers, smiling, doing their job.....your just another patient passing through (I been on that side of all of this - no biggie)
For the Pet Scan you are injected with a radioactive substance that will target the cancer cells and "light them up" on the scan

The biggest suck ass part of the PET Scan is the pre-scan diet.....at 1:00pm the day before I could eat nothing but protein.....so basically just meat with some salt/pepper and nothing to drink but water....the radioactive shit is attracted to the sugars.....
Thankfully I had Alan, KenG and Moriah over for dinner and they were great distractions for me - although there were a few times where I was ready to say "screw it all" and down a handful of Mike and Ikes followed by a big glass of red wine......I didn't.......
Could not have anything to eat after 9:00 pm, just water to drink .....comical at 8:45 when I realize the instructions said I could eat nuts.....horked handfuls and handfuls of almonds in the "final 15 minutes"

Okie...back to the scans.....first its the injection of the radioactive "juice"......kinda messed up that in order to see the cancer that is inside you that have to juice you with a cocktail that makes you "hazardous" to pregnant women for 24-48 hrs.......
You lie still, let the "juice" circulate the system....then its into the ice cold room, put on the table, strapped down like a mummy (good thing I had brought some of my own meds from home to make this all more tolerable) thumbs up from the tech and the table you are lying on slides into that tight tube.....stay in there for about 45 minutes, sliding in and out, wondering why it seems at times to be stopping over certain areas more than others????
"What are you doing down at my pelvis?????? the cancer is in my chest...focus you piece of shit machine"......"did it detect something in my pelvis???" ......"stop looking so long at my head......there's nothing to see, move on"..........and that is how it goes.
Alone, cold, mind racing......
January 25, 2012 the question was "DO I HAVE CANCER"
June 18, 2012 the question "HOW MUCH CANCER DO I STILL HAVE"

CT scan was done.....easy easy had plenty of those in the past five months......and at that point my "morning meds" really kicked in and I cruised right through.

Suck ass thing was that back in January it only took an hour or so for the doctor to walk in and say " You have cancer".......this time around I have to wait three days to get my results.....
Going batshit crazy....yea small kine.....doing what I can to distract myself from all the thoughts.....

"could it all be gone after 6 rounds of chemo"
"the last round of CT's showed it was still there, shrinking but still there...no way it's gone"
"Why did that specialist I spoke with during my last hospitalization have to say....the good thing is that it is showing signs of shrinking ......just no one knows why its shrinking so slow" (yeah that one has stayed with me the past 2 weeks)
"What is radiation going to be like"
"if radiation doesn't finish it off, can I really handle another 6 rounds of chemo"
"who's fucking life is this"
"NO MORE....NO MORE.....NO MORE....."

then there's the flip side
"Whatevah's...I just pushed through 6 rounds of chemo I can handle anything"
"I seen kids with worse than this, pony up push through and come out on top"
"I get so much strength and inspiration from daily messages by survivors that are in my life"
"I asked to die when I was in with my septic pneumonia and it wasn't the right time....so I guess going have to stick around and see how this all plays out."
" I am STRONG....I gotta be a WARRIOR.....gotta do what gotta do"
"one foot in-front of the other"

Thursday will be the "Big Day" another one of those....your life will never be the same after this talk kinda mornings...prepared for it??? how the fuck do I prepare for it....I'd like to drink a bottle of Jaeger and smoke a big fatty......but I won't......

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SORRY - thought for sure this entry would be longer, more full of insight and humor....something....but to be honest right about now I don't have a whole lot....it's been a hell of a 5 months gone by.....I THANK YOU ALL for all of your continued LOVE, CARING, SUPPORT and GENEROSITY.
I would be lost without all of you.....THANK YOU for the re-living past moments in memories that has put huge smiles on my face and given me full on belly laughs, thank you for allowing me to cry when I need to.....
Sorry I can not be more entertaining this evening
I will for sure let you all know what the results are after I get them on Thursday.

LOTS OF PEACE LOVE AND ALOHA TO YOU ALL

But friendship is precious, not only in the shade, but in the sunshine of life, and thanks to a benevolent arrangement the greater part of life is sunshine.
Thomas Jefferson


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