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Saturday, February 18, 2012

"Diagnosis Day"

GOOD MORNING FROM HAKIPU'U



OKIE....had a good nite sleep.....coffee is flowing......SERIOUSLY folks is there anything better than a fresh ground fresh brewed cup of 100% Kona Coffee???  I have plenty to share...

So lets get going with this story........ Thursday February 2.......DIAGNOSIS DAY
So anyone that has known me through life knows I have never done anything the way I was "expected too", always had to do things "my way" , "live outside" the box, "make up the rules as I went along".....I never did any of this with malice, ill will or trying to break laws or stuff like that....
Just like setting the bar a little higher for myself and seperating myself from "the pack" and living a life full of adventures.....turned out not so bad - HUH?!?!
The person who can help describe this from my small kid days is my friend Dawn....we go back to like 5 yrs old....what a blessing to have a friend in life for so long, through lifes journeys you lose track once in a while, but then paths cross again and you can pick up right where you left off....I am so fortunate to have a life FULL of friends and experiences like that!!!!
....SORRY....back to the story........
So I had "warned" the doctors at the start of all of this, when they couldnt figure things out with the needle biopsy, my clinical picture/labs/tests (except that pesky CT) were all normal......that I would probably turn out to be a "special case" and they  could all get famous off of me!!
So in walks Oncologist with "The News".....no shit he has a little grin on his face and a chuckle as he's trying to tell me.....we laugh and I'm all "OKIE...lemme have it..." and he's all...."You have TWO DIFFERENT TYPES OF CANCERS IN YOUR CHEST....." yah yah time shoulda "stood still", they lights shoulda burned brighter, I don't know what.....instead we all had a good laugh.
The pathology came back to show that the 6cm mass mediastinal mass is Hodgkins Lymphoma and the "lil guys/gals" scattered around my chest are Diffuse Large B Cell Lymphomas...........FRICKEN WERID HUH?!?!?  We would later find out that there have only been something like 20-30 folks ever presented like this, and those were very old folks and late stage AIDS patients....I am not "THAT OLD" and am HIV(-)......so everyones left scratching there heads..........
My response to the news "see I told you so!!!! " .........look over at the residents and I'm all "ooohhh aren't you folks STOKED to be on this case!!!....all your little resident friends must be soooo jealous...tell 'em I take cash they can join this case!!".......attention back to Oncologist and make my point clear......."OK so go for it and look forward to getting published, you can get your big face all over next years "Top Doctors of Honolulu Magazine".......but be CLEAR.....if this is something new, that has never been seen before I GET TO NAME IT!!!!......if you guys name it , I will purposefully dropped dead on your assess so that you get nothing!!!!"   HA HA HA HA!! I think he got the point, which really was - We have to LAUGH through all of this.....as much as possible!!!
I wish I had recorded the calls that were made the rest of the day.......the responses to my delivering the "HORRIBLE NEWS" of my 2 cancers was 100% across the board met with responses of laughter and instant comments of "why you always gotta top everyone else"......"way to raise the bar"....."for just this one time couldn't you just make things simple".........
There is no other way I could have imagined dealing with the news. It was instant that I knew and vowed "NOT ONLY WILL I BEAT ONE CANCER.....I AM GOING TO BEAT TWO CANCERS AT THE SAME TIME.......AND I AM GOING TO DO IT IN RECORD TIME!!"

GAME ON!!!!!
"I got too much going on in my life to be spending all this time on this cancer non-sense"

"Sooner we go to battle....the sooner I kick this things ass and can move on with life"

So after the doctors held their special "Tumor Board Meeting"......of course I asked to attend but was shut down .....ha ha ha !!!!! Following that plans were made to move forward with treatment ASAP.....mind you these bastards in my chest were growing while we waited the week to get a diagnosis and I was looking funnier and funnier with my adams apple pushed over to the right side of my neck ;)
Treatment would be a modified version of the "CHOP protocol" called "CHOP-R"........

The chemotherapy protocol CHOP is one of the most commonly used regimens to treat non-Hodgkin lymphomas, according to the American Cancer Society. Recently, the drug rituximab has been added, making it CHOP-R, but that is up to the discretion of the physician and the individual situation. Drugs in the CHOP regimen include cyclophosphamide (Cytoxan), doxorubicin (Adriamycin), vincristine (Oncovin) and prednisone.

Read more: http://www.livestrong.com/article/54058-side-effects-chop-chemotherapy-protocol/#ixzz1mlIIl2jm

This choice was made because the B-cell Lympoma (little guys and gals scattered in my chest - that would later be named "Neil") is the Non-Hodkins Lymphoma and the more aggressive of the two....hopes are we are going to get both the fakkahs at same time.

Of course the them "CHOP-R" for me means only one thing.....
One of the highlight of my life....being in the "chopper" with Alex shooting the 2011 OluKai Ho'olaule'a for Ocean Paddler TV.

The day that lead to me capturing this shot that landed on the cover of Standup Paddle Magazine.......how friggin' amazing is that!!!!! One of my BEST DAYS EVER!!


OKIE....back to the cancer/chemo crap....... so we kinda know what we are up against and have a plan.....finally....now it's time to  HIT THE GROUND RUNNING AND ATTACK !!! Chemo would start the next day.......BAM.......I am shoved further into this "New Cancer Reality"......this is really happening......."holy shit!!! I'm a little scared".........
Truth be told, I am fortunate that I have spent so much time around chemo and radiation in my days....I think for plenty folks newly diagnosed with cancer and hear they will be receiving chemo/radiation have a certain level of anxiety they need to get past......what they know of it is just the words (bad words...words you never want to hear) ...for me I know what it looks like, I know what to expect, I have seen worse case scenarios.....that level of  anxiety that I think most must go through as they step foot at the front door of this living hell they are about to enter is non-existant for me....fear yes, but anxiety of unknown luckily not an issue for me.
I have stood by, supported, walked with hand in hand some of the STRONGEST -BIGGEST- LITTLE- WARRIORS you will ever come across. I am not saying I know the exact hell each person must endure but I have seen how the kids handle it and am commited to honoring all of them and going through it the way they did/do.......honest,strong, honest, weak,honest, happy,honest, sad....always honest....never worried about hurting someones feelings (not in a mean spirit way)....honest....honest....honest.....honest..... and LAUGHING/PLAYING WHEN EVER POSSIBLE.

FRIDAY February 3....Chemo Day.....better than that my sister and best freind in the world arrives in Hawai'i...... Shawna and Deroy plan to meet her at the airport and pick  her up......wish I could insert a pic of Deroy here.....BIG SOLE BRADDAH......I ask him to keep his sunglasses on and speak little when he picks her up...try be "all scary guy".....it never works....reality is he is one of the sweetest biggest kindest teddy bears you'd ever meet (just dont't piss him off or be a threat to his family or friends)........Amy  arrives at my hospital room and instantley I a huge sense of calm and peace comes over  me...I am not sure how, but she has always had a way to have that special effect on me. Right away its kissing, hugging, laughing......Shortly after her arrival Kawika and his beautiful daughters Julie and Jane arrive and present Amy with a traditional proper Hawaiian lei greeting acompanied by the appropriate chant......these two young ladies are so beautiful, so talented, full of TRUE ALOHA.
This is a memory I and (I think I can speak for Amy) will cherish and carry with me for life.

So everything is set.....time to start chemo.......prior to infusion we pause, Kawika leads us in pule...and then its game time.........ummmm .....hmmmmm .....port is not really flushing.....hmmmmm....try flush with little more pressure.....its going but sluggish......WHOOSH....
Simultaneously the nurse says "there it goes" and I say "did you hear that!!!!"
No shit I heard the WHOOSH/POP.....I've been known to be a small kine drama king every once in a while....and probably would have thought thats all this was if she didn't say it all of a suddened flushed easily when I heard the whoosh pop.....long story short.....after going to imaging and confirming placement and function......the quote from the nurse was......."Your too  muscular for your port".....(sounds like we need a remake of "I'm too sexy for my shirt")  everytime I moved/flexed the pressures go up on the pump and it wont infuse......was good fun striking poses to prove this.....been a long time since someone asked me to "flex for them".......
So while all this was happening chemo infusion got pushed back later and later.....what a blessing that would turn out to be......
Before the "poison" would enter my body and my life would be further altered forever...before the real battle would begin.....I was given a bit of a reprise....which gave Amy and I the chance to quietly enjoy the last sunset, before everything really started to change......
A few years back I was fortunate to participate in the American Cancer Society Relay for Life...the concept of this is, the "relay" begins at sundown - this timing denotes the "diagnosis of cancer" the time when darkness sets in. Teams continue to walk through the night...the dark quietness of nite time denotes....darkest times of treatments/therapies....chemo radiation etc etc etc.......sunrise/day break denotes the end of treatments/the end of "living with cancer" the begining of "living as a cancer survivor". I have greatly simplified this ....feel free to check them out at Relay For Life......(oh and anyone who's interested in heading up "Team Patrick for this years Relay here on O'ahu, let me know......we going rock the 2013 Relay for Life!!!!!!!!

So we were able to enjoy the sunset (although we both would have preffered sitting on the beach , sand between our toes and not having to see it from behind glass...7 stories up.....the special moment shared was significant and timing couldn't have been better.

Some time after 8:00 pm the chemotherapy started flowing......first up was the Rituxan.....this is the one that has most potential for reaction during the initial/1st infusion. So infusion is started slow, then after specific periods of time have passed, if no adverse reactions the rates can be increased.  I made it through with out incidence and was up at max infusion rates with in a few hours .......C'MON ....SERIOUSLY?!?!?! ........DID YOU HAVE DOUBTS I WOULDN'T FLY THROUGH?!?!?!?
All the anti-anxiety, sedating, mind altering meds that then can offer in the hopsital would never work as well as lying there in the dark of night while the infusion were happening, listening to the sound of my best freind soundly asleep in the pull out bed at my side (the time change/jet lag got her). I was so blessed that she could be at my side holding my hand, calming me, strengthening me, loving me in that unconditional way she always has, arriving just in time to take the first few steps into the door way of HELL at my side.

By about 2:00 AM, the events of the day had worn me out, my focusing on the chemo drip drip drip into my body started to get old....sleep was coming and coming fast.....
I took this sometime around 2:30 am .....chemo infusing with out problems, tired but feeling strong and determined to meet this thing head on with a smile on my face.......that was the best few hours  sleep I had gotten in over a week.

OKIE...good time to take a pause in this story.........will try get back to you all this evening....moving closer to goal of gettting this thing at real time...looking forward to the cathartic benefits of getting all the shit thats rattling around in my head out....seems like sending it out through my finger tips onto this blog is great therapy......

Next up: coming face to face with the post chemo "Puke Monster"......discharge and transition to home......thanks for keeping up with me on this and all your wonderful comments and feedback!!
One of my all time favorite shots of my sister- best friend Amy, one of the most amazing, strong, loving, caring, intelligent women I have ever know.......Mother, wife, daughter, sister, friend.....the real proof of how folks can be truly as beautiful on the inside as they are on the outside.
I LOVE YOU AMY, AND  WOULD BE LOST WITHOUT YOU RIGHT NOW!!



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