DENIAL......

Denial :

 in psychiatry , a defense mechanism in which the existence of unpleasant internal or external realities is kept out of conscious awareness......

WOW...hard to believe it has been since SO LONG since my last blog entry.....was all geared up for radiation, had my army at my back, was putting on a good "front"....appearing to be strong for everyone ...

truth be told I didn't handle any of it real well, I kinda chose the "denial route"

I honestly thought this whole "cancer mess" was going to be a minor "blip" in my life.....get diagnosed, deal with it, go through chemo....deal with it and then be told "ALL CLEAR"........"time to move on with your life"

I did everything I was "supposed to"..... was a "good boy".....followed "the rules"......SO WHY THE FUCK DID MY CANCER NOT RESPOND AND GO AWAY ONCE CHEMO WAS OVER????

I honestly was blindsided by the Petscan results.....to be told not only was there still tumor present, but that it was "ACTIVE"........c'mon gotta be pulling my leg ....right?!?!??!

NOPE....this was more shitty "Cancer Reality"......
So kept my head high and marched into radiation treatments like the "Warrior" I have claimed to be....

I have never been less of a warrior.....Treatment Day #1 luckily Alan was there at my side....I think that was the one thing that helped me fight back the tears....there is nothing like having a good friend stand beside you(well at least until the zapping started)  at one of the very worst moments in your life to alleviate some of the distress.....

Yup thats a pic of "the table".....every morning for  5 weeks Monday thru Friday (they were nice enough to give weekends off).....I woke at 5:00 am got myself ready and drove over to the other side of the island for my treatment ......45 minute one way drive for what was usually a 10-15 minute treatment........
I think for me it was the having to get up by alarm every morning and EVERY MORNING  being reminded as soon as I was awake that I HAVE CANCER.....no few seconds to wake up thinking all of this has just been a "bad dream"...or fighting to stay in that nice dream I was just in...NOPE every morning it was "GET UP YOU HAVE CANCER AND YOU HAVE TO GO GET RADIATION".........
Radiation....you know the same shit everyone was afraid of following 3 Mile Island Melt Down.....The Fukishima Nuclear Plant Disaster in Japan following the quake......yeah I was voluntarily going in on a daily basis to subject myself to radiation....voluntarily.....

The staff at The Queens Radiation Center was AWESOME.....and made a shit situation much more bearable.....

They got to know me well pretty fast when it was less than 24 that I "rubbed off" one of my "temporary radiation markers" and was promptly given 4 permanent tattoo markings....

So every morning half asleep sitting in the waiting area I would see the same patients waiting for their radiation as well...I think most were envious that I didn't have to put on the hospital gown and "special white radiation robe"......I had no shame in taking my shirt off anywhere anytime not to have to put that costume on!!! Was nice to "make friends" with a few other "warriors in the trenches"....

0700 the doors open and I was always the first called in.....into the radiation room I'd go, strip from the waist up, hop up on the table and "assume the position"....

For me this was arms up, hands over head grasping two handle bar like thingies.....

The tech's would move me around....calling out  numbers and settings till I was right where I was "supposed" to be...

This is what I would stare into....the radiation would come out of this machine and blast away at me....

Once I was all set in "position" I would heard the tech tell me we was "good to go" and then they would haul ass out of that room......

ALONE.....completely absolutely ALONE......

Always with the good kine Hawaiian music station playing......but wasn't long till that was drowned out by the unsettling large buzzing alarm sound that would signal "RADIATION IN SESSION"......everyone stay clear....well except for the poor dude stuck on the table....

ALONE......ALONE........ALONE.......

The first few treatments the tears flowed freely and hard......not going to shit you I was a emotional mess....

Felt like being "slapped back to January 25"........"why me"....."what did I do to deserve all of this"......"this isn't really happening"......"I think I'd rather be dead"......

BUUUUUUZZZZZZZZZZZZZZ........quiet stillness as the "radiator" spun around to zap me from behind......try focus on the good tunes playing.....go to my happy place....almost there....not quite ready

BUUUUUUUUZZZZZZZZZZZ........zapped from behind.

Pau...tech's come in , get dressed, crack a joke or two , shoots.....see you in the morning.
First few rounds the fatigue KICKED MY ASS and I spent most of my days asleep in bed after getting back home from treatment.....but I think it was more mental...certainly there was the physical part of already residual fatigue from my chemo, the getting up at 0500 to drive the 20 miles then the 20 miles drive home ( I really didn't need a driver....and I had plenty of offers....It goes back to my need to feel some independence in all of this)....but mentally I was beating myself up....
About a week into treatments I was able to get myself on the table, get into position and before I even heard the techs say "we good to go"......I mentally removed myself from that room.....always aware in the back of my head of the BUZZZZZ'ing and what it signified .....but somehow stop getting overcome with emotion and the feeling of being so horribly ALONE.

BAM....all of a sudden before I knew it the techs were back in the room pulling me out and sending me home.......

I found a good balance of taking a nap for a few hours right after getting home from treatments and then being able to be up for 4 hours or so before another nap......
I had thought about writing this blog time and time again....and I apologize for not doing so...but in doing so it would have opened the lid on the box of denial I had put myself into...
Somewhere around week 2 the radiation burns started on my skin.....did real good with natural oils and frozen towels to help with the itching.....didn't realize till someone else applied the oils to my skin that because of the neuropathy and loss of feeling in my finger tips I was "rubbing /scratching" way too hard....hence the bleeding I was causing.
Truth told.....the compasion in the physical touch of someone else applying the lotion and "taking care" of me for even just a few minutes became a highlight for me!!!

This pic was taken sometime around half way point of therapy....the reddened area on my upper chest and neck that looks like a sunburn is the radiation burns....matches on the back....
This progressively got worse, to the point of blistering and to the point of my having to go on some medicated burn cream.....
THIS SUCKS!!!!!
Best way for me to describe how it felt to me.....imagine getting a sunburn at the beach one day...we all been there, but instead of that sunburn getting better the next day or two it just progressively gets a little worse each day for a 5 week period
I will say it again  THIS SUCKS!!!!!

But.....pushed through it and radiation was pau this past Wednesday....a huge HUGE MAHALO to everyone who was there to rub oil on, get aloe plants to me for plant in the yard, support me with notes, calls, messages. The daily countdowns on Facebook.
HUGE shout out to my 'ohana at 'Oiwi Ocean Gear for "sponsoring" me and getting me all kind of comfortable/breathable, light high quality cotton tees and for all my SPF sunblocking shirts!!!

One MAJOR HIGHLIGHT during "the radiation" weeks was a weekend trip to Big Island with Alan, KenG and Moriah to celebrate KenG's Birthday.

Camping at Makalawena Beach

and best of all was a semi-planned hike out to the flowing lava coming down from Kilauea Volcano -7 mile hike in = 7 mile hike OUT (not to mention we didn't start the hike till about 7:00pm).......stupid thing like cancer NOT going stop us!!!

So stoked and blessed to share this experience with the 3 of them.....was a nite we will NEVER forget ( and probably never do again!!) and I was so thankful to have my "Weekend of Denial" trip!!! <Mahalo's Lauire K for the tickets....told you I would use my b-day gift for some good fun!>

Treatments 21-25 were the most intensive, the "radiator" would spin around me like a clock stopping at the every ten minute mark to zap the shit outta Bob from all sides/angles......a PURE SUCKFEST!!

So there ya have it......summed up the past 5 weeks with out going on and on about radiation ....hope I was able to get an explanation and my point across.
Again THIS IS MY EXPERIENCE....I am not speaking on behalf of anyone else....I am not comparing myself to anyone else...I am sure there are plenty that have had it worse and plenty that have had it easier....this is MY EXPERIENCE!!

What's the plan moving forward..........

A 3 MONTH WAIT BEFORE DOING FOLLOW UP SCANS!!

Radiation doesn't kill the cancer cell on "impact" (yeah I thought it was just like the old Asteroids video game too) instead radiation therapy kills cancer cells by damaging their DNA  (the molecules inside the cell that carry genetic information and pass if from one generation to the next) Radiation therapy will either damage DNA directly or create charged particles (free radicals) within the cells that can in turn damage the DNA.

Cancer cells whose DNA is damaged beyond repair stop dividing or "die". When the damaged cells die they  are broken down and eliminated by the bodies natural processes.

I kinda like to think that over the next 3 months every time I TAKE A SHIT MORE OF BOB WILL BE LEAVING MY SYSTEM!!!

He wouldn't let them cut him out so I intend to SHIT HIM OUT!!! 

....my treatment team is all pretty much on the same page for waiting this long (what sounds like and eternity to me) so that they can be sure if we see cancer still present on the scans that the radiation had plenty time to do its job .....if there is still cancer present then it will be on to another 6 months of chemotherapy.......

For now it is 3 months for me to focus on regaining my strength, getting past the burns and fatigue. Trying for some "normalcy" ......although I have no idea what that really is anymore.

Have some wonderful friends that I haven't seen in a long time coming to visit...and thanks to another generous person in my life I have 2 more round trip interisland plane tix with my name on them.......I'm thinking a "disappearing trick" to Lana'i is in order.
The battles and drowning in paperwork are still going on.....battling with insurance carriers because they are refusing to pay my oncologist since I didn't have a recommendation from a PCP.....even though they didn't start covering me until I was 2 months into treatment.
TDI ran out in July, SSDI was denied, so for now I am on welfare......blessed to be keeping my "head above water" thanks to the generosity of family, friends and strangers.
Have an appointment with Legal Aid this week to deal with  the SSI applications/denials.
And battling with the newest healthcare coverage folks to try find a PCP before they start denying paying bills.

On the bright side of all of this....last week was the Patrick>Bob Benefit/Fundraiser my friends organized and through for me.......HUGE SUCCESS......CRAZY THE AMOUNT OF LOVE IN THAT PLACE!!!!
Pulling together the pics and memories and will devote my whole next blog to trying to put into words what that experience was like!

Here's a "sneak peek"
http://video214.com/play/xFWkg1FnaFhehkMri7mbcQ/s/dark

As always a MILLION THANKS to all of you NEAR and FAR for you continued caring, support and love 

LOTS OF PEACE LOVE AND ALOHA TO YOU ALL

P