Mohawks.....Face to Face with post Chemo "Puke Monster" ...going home...

So, Round #1 of my Chemo infused without incident....slept through the last half of it actually.....woke up the next morning feeling like "Supah Man"!!!! Was wizzing around cleaning/organizing, eating anything that wasn't nailed down.........this was all part of those high dose IV steroids......was in shower when things slowed down a bit, and had to back off on my pace pretty quick.
Was starting to get stoked....folks were actually throwing around the discharge to home words......I really wanted out of that hospital, to be home in my own place, surrounded by my stuff, my noises, my smells, my Hakipu'u.......then there was the part of me that began to be little scared of going home, not having the support system of the nurses and doctors, not having the strong dose IV medications right there if I needed them........but most of all........"going home" meant bringing the cancers home with me....further solidifying this new reality......getting more real everyday.....infusing into every single part of my life.....barriers up.....denials in place.........eventually they are knocked down, fall down or hopefully I can realize things more better if I just take them down.........the time had come to move forward and blend my "Pre-Patrick with cancer" life with my "Patrick with cancer life"............always moving forward to "Patrick Survivor of Cancer" life......I dont think any other 4 words have had so much meaning and weight as those do, even know just typing it I'm hit with the salt water leakage from the eyes thing again.......
"SURVIVOR" will I be? I know many, they did it!  I know many that didn't survive, they fought hard....they were kids .....they deserved to survive......I have had an amazing full and happy life full of love, adventures, laughs and beauty........can't I trade places with one of them now....let them have there lifes that were just begining back.........
Nathan...Alyssa....Twan.....Caroline.....Kelly.....Junior.....Laura..... I could go on and on  and on with the list of children I have known that lost there fights, never gave up, LOST.......WHY?
Fate? Destiny?...........I can not go back and change anything for them now....what I can and will do is move forward with my destiny and in honor of them I WILL FIGHT....they have all, each and everyone of them given me some different tool, some different strength to handle this and beat this and to somehow use this shit experience to make a difference in the world as I do...... I LOVE ALL OF LIDS YOU SO MUCH.....and yes since the bombshell on the 25th I have been aware of each of you coming around for a visit......I wish for a split second all the folks around me could catch a glimpse of my "Cancer Okole Kicking Hui"...your beautiful smiles, rascal ways, different personalities and your strengths ......how blessed am I to have you all surrounding me now that I NEED ALL OF YOU.

Alright back to getting this story caught up...... CHEMO in ...no real biggie....going home? Have to wait for 24 hours after infusion ....just in case....so cruise for Saturday and see what happens........
Say HELLO to the HICCUPS......
Apparently........ hiccups are also associated with chemo therapy, something to do with the chemo irritating the diaphram , found to have greater prevalance in men, and have an inverse relationship with nausea and vomiting (more hiccups = less nausea/vomiting and vice versa).
I know what your thinking and believe me I thought it too........."WELL SHIT...I'll take hiccups over puking ANYDAY"...............My thought processed changed after the first hour of non-stop hiccups....Sure it starts off all funny, and I'm thinking "but of course...I'm going to be the one freak who gets hiccups as chemo side effects.....the laughter and jokes passed with time.....after a certain point of non-stop hiccuping it just becomes PAINFUL.....I was able a couple of times to fend them off by drinking ginger ale upside down...sorry no one got a pic of that move! A good friend forwarded a study about treating the "chemo-hiccups" I haven't had a chance to get into it yet, but will before going in for chemo round #2.

Other than that the Saturday was pretty uneventful....plenty of visitors....and ummmmmm a little "rite of passage" ........the shaving of the head post-first chemo infusion.......My whole life I wanted to rock a mohawk, but jobs would never allow it...........so figured time to give it a go.......

pre buzz



rocking "da hawk" almost 2 weeks post chemo...no hair loss yet

So there you have it my first mohawk........and at post-chemo day 16 still no hair loss....

Rest of Saturday was quiet...uneventful.

Good nite sleep until.........the PUKE MONSTER showed up Sunday early morning....

I can't really recall time of day, but I think was very early morning??? I woke up as a huge wave of nausea hit me......I tried ride it out, asked the nurse for some oral anti-emetics (no puke pills) thinking I didn't want to do the IV stuff because I wasn't going have that at home and needed to learn how to deal with it...........few minutes of fighting the nausea....getting myself all anxious and worked up......there was no holding back.....tear ass into bathroom......face over toilet and out it came.......

I've never been a good puker....this one was the worse, because once again it was a "right of passage" even further solidifying me into this new reality.....I was pissed, sad, freightened.....Luckily Amy was there with me, which always helps!

I knew I had to somehow get ahold of myself and get through this....found myself thinking what would I say to one of my patients to talk them down and get them through this....found myself talking to myself like I would to a patient.......and you know what it worked.....I had to verbally remind myself to breath, remind myself that this was only temporary, remind myself to stop fighting in and just get it over with.......IT WORKED......I soon found myself on the backside of my first (and so far ONLY) visit from the "Puke Monster"

I can't recall who pointed out to me the reminder of how most of the kids at the hospital deal with their puking......who ever it was put it into perfect perspective and I will carry it with me through this journey.....

"remember when ever the kids in the hospital got sick, the just walk in to bathroom, puke it up, rinse mouth, wiped the face and ask to go back to the playroom"

One of my top goals is to deal with the "Puke  Monster" just like that should he show his face around here again.........

So discharged to HOME on Super Bowl Sunday....acompanied by Amy and Kehau (1)

I have always loved the drive to Hakipu'u......today the drive was more meaningful than ever...

the drive home to Hakipu'u

some sweet sweet overdue kitty lovin'....

So home Sunday afternoon, was nice to just be there.....unpacked, had dinner with Amy...nothing better than homecooked meal made with plenty of love.......needless to say we were pretty spent and it was for sure an early to bed nite......

Woke up Monday morning grabbed out coffees and went to sit on the dock and talk story a bit before Amy had to get prep'd to head back to her home , kids and husband in Prescott.....

Bitter sweet time to have to say a hui hou......

Mahalo nui to all of my hanai 'ohana here on O'ahu for opening up yourselves to Amy and making her comfortable and able to be the "eyes, ears" for my family .....she was able to return to the states and report that I was being very well taken care of, well loved, protected and that Hakipu'u is right where I should be to get through this battle.

Soooooo.....that's pretty much the end to the loooong narative of pre diagnosis, finding out I had cancer, hospitalization, first chemo.......first lots of things, then making my way home.
I am still learning so much on a daily basis....I have a week of "nothingness" to prepare and get strong, find a good balance between my mind/body/spirit so I can go into Chemo Round 2 ready.

Not sure what direction this blog will go now, sure will be plenty of narratives, funny stories, great memories etc etc....but I am also feeling there is plenty I need to "get off my chest' (no pun intended) and just state things the way I see them and the way I am experiencing them......

Thanks again for coming along on this ride......I've got a bit of ways to go through this hell I have been thrust into..I will do my best to go with head held high and a smile on my face, I know that will not be my reality 100% of the time.......so makes me more thankful to know you all are at my side and should I start to falter there will always be someone there to catch me.....
Lots of Love and Aloha to you All

P

(p.s. I don't go back and re-read what I write here and don't use spell check, so sorry if come across any typos or odd run ons that dont make a whole lot of sense)

"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!!



Bone Marrow Biopsies and Shirley McClaine moments.......

Aloha  - welcome back. Sorry to have missed yesterday blogging.....yesterday was the worst of worst so far, but that is behind me and today was a better day. Thing about cancer and chemo treatments, you just don't know whats in store each day, just take 'em as they come.......celebrate and go large on the "good days".......relax and try not to fight it on the "bad days"......here's to hoping the number of good days far exceeds the number of bad days when I get to the end of this ride.

Alrighty then.....let's get back to our story.......Tuesday Jan 31 2012 ....I got nothing for ya.....so doped up on post op pain meds.....only thing I can recall is someone saying I looked like a hunchback when I was trying to walk my laps around the unit.....not even sure who visited, what we talked about.....nadda...going have to check with those folks.......
So lets just FORWARD to Wednsday February 1......I wake up (still in dead end room) around 6:30 am and realize I am crying, full on tears running down my face, sobbing, crying....I guess I had been doing it in my sleep and it followed me to my waking up??? Never experienced anything like it.   As I wipe my eyes and start to focus and look around the room I zero in on the dry erase board......this is where they write the name of your nurse, the date, plans for the day, blah blah blah....I zone right in on "WEDNSDAY"....and am now fully overcome with grief when I realize it has been 1 week and at this point I am still in the dark as to what the hell is going on , all I know is I have cancer, no idea what kind, no idea what plans are, no idea if I am just going to be sent home to die.....which truth be told by this point I would have been happy to be told that, just so I could get out of that stinking hospital and enjoy what ever time I had left......brain starts play crazy games when you been on "lock down" and hopped up on meds......in walks my nite nurse, who I had quickly become fast friends with a few nites earlier.....she finds me crying and is fully suppportive, lets me cry some, lets me talk, listens, talks with me and makes me feel so much better....that my friends is a NURSE!!! We said goodbye as it was end of her shift, I got up and started to prep myself for "bone marrow biopsy day" ....sitting up in chair, still few tears falling, pulled myself together....in walks day nurse....she gets half into my room , realizes I have been crying and BAM she goes complete standstill.....(at this point I shoulda know the day I was in for) it is painfully apparent that she can not deal with my crying and I can see her physically teeter as she seemed to be wondering if she could just back up and escape the room without having to acknowledge my crying....but she realizes I see her.....few seconds go by....she leans in and says "can I call you a social worker??"........that my friends is a JUNK nurse.....especially an onco nurse!!! I assure her I am fine, pull myself together. She does take the time to inform me that I will have to give up my "dead end room" because it is a special lead lined room for radiation patients, I completely understand, ask when and am told "oh later this morning" well after your bone marrow biopsy....... and in walks the Oncologist tray full of shiny silvery torture tools.
Now I have been at the side of countless children when they have had this done, luckily I can not recall one that was not sedated to some point of comfort for the procedure, So I kinda know what to expect, dont need to see it, I've seen it plenty lets just get it done......I am quick to find out at this particular institution  they don't sedate/medicate or do anything except for a little bit of lidocaine around the insertion site when doing bone marrow biopsies........me not wanting to be a "big pantie" is all OK whatevahs.....rolls on my stomach and says get it over with.
First its the needles inserted just below the skin right around the area where your butt cheek meets your hip, little pin pricks....no biggie.....then they go a little deeper, get the lidocaine into the deeper tissue.....all G, I'm not feeling much of anything ....I'm thinking "easy squeezy lemon breezy"......then come out the biposy needle (think BIG FAT MEAT THERMOMETOR looking needle).....in it goes....all G......then I am aware of it coming into contact with bone....I am not sure if he is in the bone yet or working his way in, but there is some funky little nerve sitting in the way and as he pushes it feel as if some on just shoved a spear from top of my but cheek straight down to my foot, my leg locks and then I do a backward donkey kick, almost connecting with the onco.....who's all "dont move" and I'm all "DUDE!!! I didn't move -YOU made my body do that like some freaky puppet master!!!!!!
He does a bit of "re-alignment" ....once again I am aware of tip of thick neddle on bone and then ......in it goes......pressure? pain? nausea? PRESSURE> PAIN> NAUSEA.......hard to describe it other than to day it felt like he was in my core.......like a volcano....he tapped into my lava.....and I guess thats pretty much what he infact did......I'm chewing on the pillow, aware of the cracking sounds coming from the bedside rail....thinking NOW I KNOW WHAT A 10 IS on that 0-10 pain scale we always asking patients about.....
Needle sliding out, odd shift of pressure..... dressing applied.....I get to roll on my back.......they pack up....take my "lava" with them and off they go......
Following a bone marrow biopsy you do need to lay flat for a bit .....I am told by my doctor exactley when I am allowed up.......this becomes a bit of a debate with Nurse Nervous Nellie........I say 9:15, she says 10:30 .....I'm all ok whatever I'll be a "good boy" give her 15 and stay flat till 9:30
9:25 Nurse Nervous Nellie (Nurse NN for rest of this tale) walks in with 5 other women (random nurses aides and houskeepers) and announces its all saccarin fake cheerful "Time to move you to your new room...... you just lay flat and we'll do all the work".......
Now granted I had A LOT of stuff in my room, and it really did look like the gift shop......all of a sudden I am aware of these women (strangers) with their hands all over my belongings......one has my laptop, ones grabbing my wallet and papers, another is taking down pictures, one is dropping soda bottle and flowers on the floor.........my belonging are being shoved into bags, put on carts, its like a crazy frantic human tornado in my room.......I FREAK OUT.....get up out of bed and scream "STOP DAMNIT....EVERYBODY FUCKING STOP TOUCHING MY STUFF....PUT IT DOWN!!!"......everyone does stop, there  is silence.......no movement....then in walks auntie #6 ....big smile on her face....looks around and sqeals........"ooooooooo   eeeeetssss soooooo ehxsiiiiiit'ing you soooooo lucky youuuuuu going hoooooooome!!!!!!!!"..........instead of going more "shirley mcclaine (- young kids watch Terms of Endearment if dont get the Shirley remarks).....I apologize for my freak out, calmly ask everyone to put my belongings down, and give me 10  minutes to pack my own belongings and I will call them when I am ready to move rooms........
I do just that calm down, pack my stuff.....it's ready to go, most on the bed, call the nurse  "all ready to go now".....they come to take me and my stuff to the new room......as we are walking past the nurses station, conversations stop, they take one look at me and look the other way, head in book, grab phone......whatevah, no eye contact!!! It's laughable and at this point Im all puff chest looking like "what???whatchu gonna do"...........at least in my own mind thats what I look like....actuality I prolly look like some deflated douche bag........
The new room is right across the hall from the nurses station.......I am convinced I am being punished and moved there so they can keep a closer eye on me........ha ha ha ha !!! I settle in , arrange all my stuff and were back in the gift shop....;)

Quiet day......as if I haven't been through enough I decide its time to deal with the fact I haven't had a doo doo in about 10 days.......no shit......no I mean really I'm not kidding not a pellet, not a turtle head, just a whole lotta toxic gases..........

OK -this is the point where we go deep and honest holding nothing back.....if can't handle get out know, if stay don't say I didn't warn you!!!!

I had been on heavy dose narcotics pretty much around the clock and that has a huge constipating effect as it slows everything down......on top of that for some reason right after I was admitted I becan pacifying my self by eating poi.......you know like the chick on the sofa with the icecream cause she can not handle what ever.......that was me with my poi......4lbs in 3 days........this realization after the night befores horror stories from Shawna and Kolea about their post op no doo doo experiences that led to full on impactions that weren't realized till they were home.......lets just say those two have husbands that love them on a deeper level than I have ever known......and I will never be able to shake either of those dudes hands the same way again......going have to be the knuckle bump.....keep your fingers to yourselves fellahs!!!!!

So I ask Nurse NN if I can have a suppository.....it's time to get this baby out.......no joke she comes back in room with it and asks me if I would like to do it myself or if I would like her to "insert it".........SERIOUSLY?!!??!

"No thank you......I can do it myself"......she puts it down , lays a pair of gloves and a tube o lube next to it.......without thinking my smart ass mouth opens and out flows
"oh I wear extra large gloves and for sure dont need any lubricant".........blank clueless stare from Nurse NN????

So skip to , the "magic bullet" is where it needs go, I am sitting having conversation with Kolea when realize, magic bullets melt and will ooze.......hmmmmmmm.....something feels weird......stand up turn around......"Kolea do I have a snail trail???"........her response is uncontrollable laughter and something about havign to buy me panty liners.......

Pants changed, roll of TP tucked to avoid snail trail-age............talking talking then the rumble in my opu starts.......sounds like Harry Potter is on Hogwarts pulling full speed into the station.......I ask Kolea and Kawika if they wouldnt mind leaving the room........c'mon I'm not that nastie!!!
So how do I describe what occurs next.........there is an explosion......it's all gas.......I'm all WTF?!?!?! that it?/? then it HITS......it begins to depart my body like the spirit in the exorcist .......the room is spinning......feels like no oxygen to my brain......."omg I am going pass out".....look over at the string on wall attached to the "NEED NURSES HELP" button........no way can not pull that and have Nurse NN walk in to find me passed out on bathroom floor birthing this 4lb baby poi..........
I get through wave ~1 think its over, all up and tough and manly.........welcome wave 2.....thes sequal IS bigger, faster,  stronger........thinking "can not pass out, can NOT pass out".........

SLAM !!!! both feet up on bathroom door.......panting breathing like they do in the movies when having a baby~~~~

This gets me through waves 2,3,4,5.........done deal........2.5kg weight loss....now you know why so few photos with this entry....sorry not telling the hemorrhoid horror story....it shoulda stayed between me and Kolea.....but wound up sharing that one with some of the ladies I work the PICU with (If you work with them you prolly already herd it.....if not tell 'em I say its ok to share.......If you dont work with them your gonna have to wait for the movie)........I will not re-live it by telling it now!!!!!! ha ha ha !!!

Next entry will be THURSDAY: Pathology results day..........FRIDAY 1st chemo day.....SATURDAY the post chemo ride


Sorry folks outta gas.....going crash.....aiming to have this story caught up to present time by end of weekend.....thanks for sticking by!!!
Seriously Thank You all for reading this blog and giving me feedback.....its a crazy world I have always found myself living in and why should that be any different now?!?!?! For me this blogging is cathartic, get it all out........but it has also become somewhat of a goal, to continue on , Honoring all that have gone before me by being honest, open and very public about cancer......many many many folks are very public being the faces of cancer.........I guess I would like to be very publicly the face of  cancer and the story of the survivor behind the face......
Lots of Love and Aloha, hope you all have big plans for good fun this long weekend.

P



The weekend spent down the "Dead End"

OK, lets get right to it tonight.........





We left off with my transfer to the oncology unit on Friday where I would wait over the weekend for surgical biopsy on Monday...... The room I was admitted to was in the back of the unit no other patient rooms past mine, just a short hall that lead to doors that went out to an open air lanai/balcony.
Of course my (twisted) thought process went right to the thought that maybe an oncology unit was the last place you would want an lanai 7 stories up with no covering......You know what I am getting at!!! But later as a wise friend pointed out - if you had cancer and were at a point of "jumping" you probably wouldn't be in there seeking treatment.  The lanai actually became a big saving of my sanity....in that it allowed me the opportunity to remove myself from the smell, sound, feel of being in the hospital, could smell fresh air (as fresh as Honolulu air can smell), wind, sun, rain on my face....just an opportunity to escape this new "reality" that had been thrust on me. Looking up mauka wanting so bad to be home in Hakipu'u.
Because of the location of my room and my difficulty remembering its number I took to referring to it as  the "dead end room", when I would ask for something at the nurses station and they asked what room I was in I would respond "the dead end room". As I walked around the unit and met the staff, talked story a bit and they asked same....my response was same...."you know the dead end room..... the room down where the hallway ends"......it finally got to the point that one of the nurses pointed out that perhaps referring to a room on the Oncology Unit as the "Dead End Room" was probably not the greatest descriptor. So I agreed it would from then on be referred to as the room down the "cul-da-sac".....(It will ALWAYS be the "dead end room" to me).
It wasn't long before the deliveries started and quickly the dead end room filled with life....flowers, cards, drawings from my nieces and nephews, stuffed animals.........as one nurses aide said upon entering "this room looks better than the gift shop"!!!!

I had asked for familiar things from home as I had only packed enough for a brief visit....and this was becoming very apparent was NOT going to be anything brief about it!!! Terry,who along with Nakoa were keeping things in check back home and taking such great care of my cats,  packed the clothes I asked for, my special quilts -one made by my mom, the other a special friend made....just needed to feel something familiar......when the bag was delivered to me, sorry but I my memories get a little fuzzy - (they were giving me percocet like was candies)......I'm pretty sure was Stephanie, Rudy and Brooke who were kind enough to deliver it to me.....thanks guys!!!! (If it was someone else....SORRY).......I know your thinking hey potagee....focus and tell the damn story!!!!!
As I opened the bag to pull my stuff out I realized Terry had collected a bunch of special photographs from around my house, and now my "dead end room" was full of the faces and smiles of so much family and friends.
So yeah I nested ..........

On Saturday morning I met with the Cardio-Thoracic Surgeon to discuss my upcoming surgical biopsy, and for the first time I was given the opportunity to view my intital CT scans.

I am no radologist by any means but I have viewed my fair share of xrays, CT's and MRI's in my day......for sure enough to know that when I looked and saw that HUGE UGLY FUCKING MASS in the center of my chest .......a whole different sense of reality came crashing down on me.....it was at that very moment sitting next to the surgeon viewing the images that I uttered the words....."It's good to finally meet you Bob".....of course the surgeon looked at me like I was a little more off than I usually seem....I snapped back to reality said "that is one big ugly bastard.....I gotta name him Bob".......now I have nothing against any Bob's, Roberts, Robbies, Bobby's etc etc....Never "been done wrong" by a Bob.... I honestly do not know where the name came from but at that moment I had full realization of what I was up against (6 centimeters dont sound so big till you see it sitting in the middle of your chest, hunkered down and trying take up residence).......for me it was NECESSARY that I give my ENEMY a name/identifier .....greet him/show my aloha and then get ready to kick his ass back to the portal of hell he had crawled out of.
We moved on to the little tumors/blebs spread around my upper chest/neck.... most are located on Left side....I think at this point still only one node lit up on the right side. I was BLOWN AWAY when I saw these guys just like small rocks blocking off my vasculature (blocking blood flow) there was complete interruption of blood flow and you could see where the contrast had just flowed to dead ends (again with the dead ends.....hmmmmm hopefully not a theme in the rest of this story), but I was encouraged to see all the little veins that stepped up grew fast to become big boy and big girl veins to make sure my blood was getting to and getting out of where it needed to.
So the plan was the surgeon would go into a node just below my left clavicle and take out what he thought would be enough specimen for a good biopsy/pathology.....he would pass off the specimen to the pathologist who would be in the OR waiting to receive it (I never did find out if it was "Bad Blind Date Pathologist") and everything would go at a standstill until there was confirmation of enough specimen and then the surgeon would close me up.
So like any normal person would do (well actually like only a nurse would do) I asked "since your going be standing around waiting could you just pop my port-a-cath in"??? (thats the implanted IV access that will be used to deliver my chemo...I'll leave a later blog entry for talk about what a port is.

Doc looks at me and says hmmmmm thats a really good idea, not sure why I didnt think of that, and for the ump-teenth time in my life I had to drop the "well you know it takes a great nurse to make an excellent doctor"............So plans were set for Monday, the rest of weekend was for cruising.

My level of comfort in my care team was greatly increase when my oncologist did his bedside rounds Saturday in boardshorts, t-shirt and slippahs.........no hididng -full on local boy going surf!!! For sure "my kine doc"!!!  I did however point out the "inhumane" treatment  he would be putting me through by putting me on "lockdown" in the hospital all weekend and it was fully apparent to me where he was going......I did try to snake a "therapeutic surf sesh- day pass" outta him, but was pretty clear he was not getting on the water with the "cancer dude who had a deviated trachea/esophagus and potentially interupted blood flow too and from my brain"........we shared a  good laugh and I was for sure making a new friend.

Sunday was the day that  Koa had set up the "across the globe pule" that was scheduled for 7:08  am sunrise time in Hawai'i.    I of course was up a lot earlier than 7 and was doing my "laps" around the unit, searching out the other lanai's available to sit outside, thinking maybe one would be nicer that the "dead end lanai".....none were, "dead end lanai" had become "my spot"......there were plenty odd spiritual events that occured in the hours leading up to the pule, those are going to be kept private with me (any that involved other folks have already been shared in private).....it also seemed some folks around the world were having oddities involving me in their lives, according to what I saw posted on my facebook wall.
Let's just say that as I walked out on to that lanai just before 7:00 am I was NOT alone and those that were ushering/joining/supporting me had a presence that was one of the most comforting feelings I have ever felt in my life.
OK...picture it 7:05 seated in a chair I close my eyes, palms facing up ward, feet on the floor my entire "self" opened wide....everything emptied from my being....picturing myself as a vessel ready to receive what could be coming my way......not sure when it started but shortly after there was a burning that started in my chest.......no other way to explain it....I became painfully aware of the perimeters of "Bob" it was as if he were angy, under attack, trying take a tighter hold......at one point I imagined that scene from Alien and I though Bob would just tear right through my chest, hop out of my body and run off to find another "host" .......the burning beacame almost unbearable, but I could feel energy flowing into me and knew in my heart to sit still......this feeling lasted a few minutes then began to subside, as it subsided I felt an overwhelming sense of calm, cool, quiet exhaustion come over me......I felt the mist from the early morning rains that were coming from up mauka, opened my eyes and NO JOKE.....at 7:27 AM HST infront of me was this

Anyone who knows me well knows I am not a "religious man" .....to each his own with the religious stuff ....what ever gets you by....as long as you don't try force it on me we all good......however I am and always have been a very spiritual man......no matter what your beliefs, thoughts, whatever.....what happened that morning was POWERFUL ....skeptics will say "was in his head"...."it's what ever he wanted it to be"......say what you will.... I know what I felt, what I experienced and that was my entire self , being flooded with love, light and energy........later conversations would reveal that I was not the only on who felt what I was feeling.

To all of you that participated in the pule at that moment, for all of you that have prayed, sent wishes hopes, good vibes, strength, support all of it my way, I have received it all!!
As I have said to many of you already....it is all that you are sending me from  near and far (and damn some of you are far - I gotta get off this rock and see the world a little more when Bob is pau).....it is what you are sending me that is the fuel that I have been "tapping" into regularly everytime my tanks start to run low......please keep it all coming......I will put it to all to good use !!!

The rest of Sunday was a quiet calm day spent with friend at my bedside, phone calls, texts, emails, etc etc etc

Evening time arrived and I found myself actually happily ALONE in the "dead end room"......quiet, solice, me time..... that was until the night shift came on........full on local tita style each and everyone of them......we were all freinds fast! To that point that I think it was sometime after midnight I had to throw them out of my room where most had been cruising, talk story and eating all my food. I was NPO at midnight and had been sucking a bag of  poi like a baby on the teat.....never gave it up until 11:59...(it would be a few days later I would pay the price for "pacifying" myself with 4lbs poi in 3 days ontop of being on narcotics - but that is a whole blog experience of its own) I went to sleep feeling very well taken care of, full  and protected......and still very aware that  I was not truly "alone" in that room by any sense of the imagination.......

Monday came, cruising in the morning waiting for green light so could head to surgery.........
HOLD UP ON THIS STORY!!!
lets make clarification now ...from here on  Kehau Watson will be "Kehau #1" and Kehau Egdamin will be "Kehau #2"......has nothing to do with favorites....#1 is the elder(hee hee)

They are both very special women in my life and I wouldn't want anyone to confuse them in my story.......

OK BACK TO THE STORY NOW

Kehau (#1) was at my bedside when the surgeon walked in to take care of consents and say I was pretty much on my way to pre-op........NEVER in my life have I seen a grown, very well educated, experienced, professional woman.....turn in to a swooning 14yr old girl like what I was witnessing happen at that very moment. As the surgeon is discussing the risks (ie potential me dying) of surgery, what the plans were, blah blah blah......the "14yr old girl"is .....I shit you not -interrupting him with comments like (and I quote) "I really like you"......."you are soooooo funny (insert giggle)"......"I want surgery on something just so you will do it".........and the #1 all time best question asked of a doctor while he is trying to consent a patient minutes before surgery...........

"WILL YOU BE MY FACEBOOK FRIEND??????"

Oh yes she did folks!!!! I had on of my all time best belly laughs of my life, couldn't have been more entertained and less anxious about going into surgery.....that is a memory I will carry with me for the rest of my life as one of the all time favorite moments in life!!
Waiting for the 1:00PM transport to OR call , Kehau (#1) swapped out with Kawika......the polar opposite personality at that moment......ha ha ha ha ha  (love you guys - and truth be told I would have been lost in all of this at the very begining if it wasnt for the two of you) we sat quietly and waited.......I was"refusing" to put on the OR gown till the very last moment , and finally that moment had come.......

That's (hopefully) the last time you will ever see me in a hospital gown!!!!

So, down to the OR I went, sent of calmed after Kawika had stopped all motion, commotion, and we had and opportunity to pule prior to my getting on the gurney.
Huge MAHALO  to Kawiaka and Kehau on behalf of my  family back in the states, from what I have head you guys did and amazing job keeping everyone informed beginning middle and end.....I know it made them all feel better to know I had you at my side during a time that distance prevented them from being with me, priceless what you guys did for us that day.

You would think at this point.......the story would go pre-op, sedate, in the OR.......black out......wake up in recovery.

NOT gonna happen...... the antics of the day followed me to the pre-op waiting area.....we already established the surgeon had a very strong, funny, small kine tasmanina devil personality....I actually loved him as much as Kehau (#1) and had total faith......until he was standing over me doing my pre op surgical markings..... thats the thing they gotta do now where the use a marker to denote the operative sites, while being confirmed and witnessed, usually and in this case by the OR nurse.....as he was marking my right upper chest where my port was going to be placed he started writing and I heard him mutter "ohhhhh damn"........in true kolohe fashion there was NO WAY I was going let that go...this was the chance of a lifetime to give the big time surgeon some grief!!!
I was all "HO - HOLD UP"....."NURSE did you here that?!!?!"....."what you don't know your doing biopsy on the left and port on the right"...." what kind of dog and pony show you guys putting on here" ....he had already explained that he does surgery at 2 different hospitals and had started my marking process using the symbols for the other institution.......but I was being smart aleck and relentless thinking I was soooooo funny....

Well I'll be damned if big time cardio-thoracic surgery dude didn't one up me and put my smart ass right in its place......with a devilish chuckle he promptly took the marker and in big letters wrote across  my right pec "P-O-R-T"  and across my left pec "B-I-O-P-S-Y"....

capped the pen, handed it to the nurse, said "do not let him pull his gown back up"......gave me a kolohe wink that rivals my own, smirked said "now you happy?" and walked out calling back, "see you in the OR!!!"

There I sat with the big purple letters written across my chest... laughing and know this doc too had my full faith....my only regret was that I didnt smuggle my iphone in my butt cheeks like I wanted too......full on missed Kodak moment.

Into the OR, skooch over onto OR table, folks around, everyone chuckling at the "grafitti" on my pecs....anesthesia being given..... no versed because I made mistake of telling them previous surgeries I became quite the exhibitionsit in recovery room......mask over face...crying......ceiling tiles....why is there a condom on the handle of the or light........familiar faces.....faces I haven't seen in a long time.....not alone.....fade to black..............

PAIN, lots of PAIN....... thoat sore......crying, really crying.....PAIN...

"meester Patrick its ok, you in recovery room".....sweet little nurse at my side...."you deeed soooo goood, awww poor t'ing no need cry"......."here pleeeese put gown back on"...."ohhhh hee hee hee, no dont take eeet off....you put back on!!!!" .....apparently it was never a side effect of versed that brought out my inner stripper.....he shows up following all my surgeries!!! (Margaret QUIET  about the 1984 "fashion show"!!!)
So I gather my wits , start doing the math in my head and ensure the recovery nurses are pumping me full of enough meds that I am teetering on the edge of wakefulness but feeling NO pain.
Truth be told, I dont recall much of anything else that day (Hollywood folks going need to interview my bedside companions for the screen play), back to the "dead end room", plenty swelling, plenty pain.....PLENTY MEDS!!!
I woke the next morning to........

Post op pic.....Jan 31, 2012

Hey I tried to smile and not look like a crybaby......bad job covering huh.....

Once again another "rite of passage" as I was being enveloped in my new reality....this time really permanent.....the first marks on my body that will remain long after Bob is gone..........self doubt....too weak to do this......I want to go back in time......I want to go home.......awwww two beans in a bucket , NURSE I NEED MORE PAIN MEDS........

Lots of Love and Aloha -P

Happy Valentine's Day

Happy Valentines Day!!! Was one hell of a day here, plenty challenges/stresses.....but by end of day plenty lessons learned...most of all the reminder I am not in this alone and am so blessed to have so many amazing, dynamic and different folks with different strengths and personalities that can and are willing to help me....(how's that run on sentence) and I need to let go of all the unnecessary  stressess and focus on  my physical, mental and spiritual self so that I am strong and ready to fight on the 23rd for chemo round #2, because after that one we are going fast hard and deep with the 4 following treatments and I gotta be in top shape for that battle. So that is my ONLY duty for the next 10 days!!

Let's see where did our story leave off.......So Terry and I are in the car headed over the Ko'olau Mountains, destination Queens Medical Center. Lucky for me I have a close friend who is a doctor there, and her advice go right to ER to get "my foot in the door". Place is packed, patients on gurneys in hallway because no more rooms. In walks this healthy looking(damn handsome) 43 yr old dude who says - "I am having trouble breathing"....points to obvious mass on top of chest, and while sitting calmly heart rate sustained 130's and blood pressures 180's/120's (not so calm on the inside 'eh)....needless to say, a room opened up and in we went!
In walks doctor and I'm all "Aloha, I'm Patrick. Yesterday I was diagnosed with cancer. Here are the official CT results, seems I have a 6cm mediastinal mass and some other "freinds" scattered around my chest. heres my chest xray report (ya I don't know how they said was normal either), and here are my blood work results (yah I know weird they are all within normal ranges too I know)  I'm small kine having troubles breathing, plenty pain in my chest - could you folks help me?"......."oh and did I mention I have no health insurance"............
Bam they truly hit the ground running and took excellent care of me. Oxygen on, IV in and 5MG Morphine STAT....I've given plenty Morphine in my career, never been on the receiving end of it....thats some MAJOR HEAVY SHIT!!! I went right to my happy place!

lefMy good friend Anna hooked me up with the right hospitalists to oversee my admission and get the ball rolling.  Was a few hours in the ER waiting for an inpatient room entertained/entertaining Terry. Plan was to do a needle biopsy of one left side node( in hindsight I should have asked if they were aware of how screwed my vascualture is on the left) - the CT shows complete blockage of alot of my veins, just like a big boulder in a stream and my left side jugular vein......um no more....complete block/shut down, that bulging vein on left side of my neck....thats all collateral flow.....so if you think of a major freeway, lets say H1 here on O'ahu having complete blockage all the traffic starts to flow around to the side surface streets to get around the blockage, luckily my "side streets" never got totally blocked like the roads do here on O'ahu.....my body has been "morphing" and doing what it needed to make sure I kept going..........

Call comes down, room available, off we go. We are actually met at the elevetor by the pathology folks that are going to do my needle biopsy......ok this is where shit gets seriously funny......(not going into full details - gotta save some for the screen play yea) .....elevator doors close....... I look over and......wait for it.......here it comes....... the one pathologist is someone I had a HORRIBLE SET UP/BLIND DATE WITH A YEAR OR SO AGO!!!!! No joke......I am dying to just bust out full on belly laughing, but dont want make an already uncomfortable situation any worse. I wish I had the words to describe just how bad the "date" was, but it'll be more better when you see it as one of those flash back moments in the movie they are going to make of all this when I am done.  

I sucked it up, we got to the room I put my head back and there they went jamming the needles into my neck just above my collar bone.......good thing I had a nurse who thinks like me and she showed up somewhere between needle #2 and 3 with a healthy dose of Morphine!!! I know if felt like hell (although I would know the true meaning of that statement a few days later when experienced my bone marrow biopsy) not sure how bad it looked but at some point I heard Terry say "Okie it's time for me to go to the car and get your bags" bless her for staying strong and making it that far....I can not imagine how it must have felt to just have to sit there and watch this.  So biopsy pau, everyone gone, Terry's back in room and I have the chance to share the "blind date/pathologist who just shoved needles in my lymph node" story and we had a damn good long laugh!!!    The message here kids.....no matter what always treat folks with kindness and when possible depart with a smile on your face.....you never know when fates are going to throw you an unexpected waterballoon to the head!!!! 

So I am settled in to my room (on the transition unit) no room on the Oncology Unit yet, all can do is wait for pathology/biopsy results the next day......then the "innapropriate douche bag cancer comments" start.......hey we all have our own ways of coping.....and I had plenty of them saved up that I've had the kids use on me (or I've encouraged them to use on others) over the years.

First is the battle with the nurse as to why I can not wear my own clothes and "must wear a hopsital shirt and patient shorts"......the patient shorts, well there wasn't too much of a battle once I pointed to the large prominent hole that does not close in the front of them and explained to here that when I said "I go commando" I wasn't making threats to blow the place up........she gave in, but wasnt going to give in on me wearing my own tshirt.....so yeah I went there.....the first few dollars were place in the "douche bag jar"after I heard myself say......."I am going to wear my own shirt and do you want to know why? BECAUSE I WAS JUST DIAGNOSED WITH CANCER" ......yea yea ....no need say it I got all the lectures when shared the story next day........but I did go to bed that nite in my own t-shirt!!!





Sleepless nite due to many factors, brain wouldnt shut off, noisest night staff nurses of all time on the unit and the roommate I got at 1:30 AM......not at peak perfomance the next day....waiting and waiting for results......I meet my Oncologist - super cool local boy and we hit it off instantly (not going to rat out who gave him the nickname "Dr. Mc Hottie Hawaiian")....I think we waited most of the day to find out the pathology on the biopsy was "inconclusive" and it would be necessary to do a surgical biopsy .....and what with it being late on Friday the surgery wouldnt be possible till Monday. WHAT? you didn't know folks aren't sick and in need of the same care on Sat/Sun they need Mon-Fri......I always wondered if the hospital administration thought we dischared patients late Friday nights and re admitted the real early Monday mornings........lets just be thankful we weren't right in the middle of the holidays....I might sitll be laying in the hospital!!!

Luckily they found me a room on the Oncology unit and there I would sit and wait till Monday. I know at this point alot of folks were thinking same thing you might be thinking now......why not get on a plane and head to States for care at one of the "premiere cancer treatment centers" FIRST- I had the utmost trust and faith that I was where I was meant to be......SECOND - because of the pesky little problems of the little "tumors" blocking my blood flow and the "big one" at this point having successfully deviated (moved) my trachea/esophagus about an inch to the right ( picture looking at me and when I swallow you see my adams appled sliding up and down about and inch from the center of my neck......get it?) I was the last one anyone was going to want to be on a plane with crossing the Pacific Ocean.......If I am going in a box boots up -LAST  place I had better wind up is LA!!!!

So I became an official "oncology patient" it was over the next 24-48 hours that I realized the blessing that was going to become apparent and stay with me as I go on this wild/crazy cancer ride....that was the outpouring of LOVE, care, concern, support, prayers, positive vibes etc etc etc that came my way from all over the world....

Was sucky to have to get cancer to get me to slow down long enough and re-connect, make stronger connections with amazing wonderful people I have been blessed to share life with.

It didn't take me long to realize that what should have been a complete shit experience and situation (dont get me wrong being diagnosed with cancer is as shitty as it comes) was turning out to be one of the most beautiful experiences of my life, making me aware, unlike at any other time in my life, about not only how many amazing folks I had in my life, but also how many folks who's lifes I had effects on ..........was a heavy heavy trip......found myself referring to it as "being alive at my own funeral" the verbal and non-verbal exchanges that were happening were beyond beautiful and meaningful and I was quick to realize/question - why is it we ALL do not live out lives like this everyday.....being sure to show appreciation, affection, love to others....I am not just talking significant others, kids, family, close friends......but EVERY PERSON we encounter as we navigate through this maze called "LIFE"......

Why does it seem like it is so much easier to say something negative about or to someone, "go off"on so and so because he/she did something "I" didnt like.........BUT we make it seem soooo DIFFICULT to take the time to say a kind word, give that random person a compliment, smile and acknowledge our fellow human beings........

How lucky that in this time of "darkness" so much light could be shed on what truly matters in my life!

So, my tale will take a pause at this point......been aong day ....my tail is screaming for its spot on the sofa!!! And the monster in my opu is reminding me time for kaukau!! (theres your google assignment Ang).....

closing todays blog with the shot of how today started for me.......Hope you all had an amazing Valentines Day and were surrounded with LOVE and ALOHA

be sure stay tuned......next up ....the weekend hospital boredom antics, the wooing of the nursing staff, the power of pule and best of all the immediate crush Keahu developed on my surgeon, and surgery day....I promise will get us caught up to present day as quick as can......

Aloha e na hoa......

Aloha e na hoa - Welcome friends
Bear with me as I am dragged from the "stone age" into this new world of technology, this is my first ever blogger experience......I am a horrible speller and even worse with ......um whats the word for periods, commas, exclamation points.....yea what ever that word is. I was once told in school I was "King of run on sentences"......
Hmmmmmm.....so where do we start??? I guess you wanna here how I got to this "dude battling 2 cancers" place in life......
So life was going great, just spent my first year living life in Hakipu'u, was still working perdiem as a PICU nurse at Kapi'olani Medical Center, and crewing on Sailing Canoe for Hawaiian Ocean Adventures. Photography was really picking up, was doing more work with Ocean Paddler TV, had my first magazine cover as a photographer. Continued trying fill my role as President of Malama na Honu.
Had just come off one of the most amazing years of my life, did my first chanel crossings racing sailing canoes, got to travel to some of the most remote spots on most of the main island chain - Highlight was for sure Kalaupapa. Had been meeting so many new and interesting folks, old friendships growing stronger.....was for sure the happiest I think I have ever been (I know cue the duhn duhn duhn duhn music)
Got through the 2011-2012 holiday season things were CRAZY busy, I was working a nutz schedule between crewing on the sailing canoe and working at the hospital. So when I was completely wiped out when I got to a day off , I thought nothing of sleeping a whole day away.......first of the red flags?!?! nah not really I'll fill you in on those in another post.
So was right around the first week of January when one morning I swallowed my handful of vitamins and had a feeling in my throat that one never went down, looked and throat was clear so shrugged it off and thought "ah great getting sore throat" .
As the days went by the little scratchy feel started to feel more and more like a weird pressure, kinda like if someone put their hand around your throat and was squeezing a bit......then I started to notice a weird swelling just at my supraclavicular notch. There was this weird little sac like thing that seemed to be growing.
Being a nurse to the core, I of course self diagnosed and "convinced" myself it was a goiter (although it would have been off by an inch or so from my thyroid) and was "too busy" "too many folks depending on me" had to push on and push through, you know "I'll deal with it later"
By January 11 I knew I had to address the issue, went and got some lab work done as well as a chest xray. All results were normal, blood work all within normal ranges, no thyroid issuse, and (odd now that we know what we do) my chest xray was CLEAR ( ya we going deal with that soon enough)
I was of course relieved, still not sure what was going on , convinced it was just some kind weird infection, asked the docs for a weeks worth antibiotics and went on about life.
While "going on through life" this thing continued to grow, I could feel it putting more pressure on my airway, would wake in middle of night coughing like someone choking me and began to notice I was getting winded easier and easier. But of course things had to get done, I was a busy many, living an amazing life and getting stoked for things that were coming in the future......deal with the sick stuff later right.
This was for sure the point I was in my deepest state of denial. Somehow I knew what was going on in my body, the signs were there, asking folks for what oncologists treated their loved ones. "Bumping into" folks/kids who have already left this reality we call life....all kind weird stuff like that.
To be honest it wasnt until Tuesday January 24 after watching the movie 50/50 that I knew I was going into the ER the next morning and it was time to deal with this. (If you havent seen the movie do see it....so NOT what you expect)
Wed January 25 I show up at the ER doors Castle Hospital and as I walked in I had come to peace with the knowledge that life would never be the same, there was no going back.......
Didn't take more than one look at me and listen to my breathing I was rushed pronto into the ER, no waiting room for me.
The staff was amazing, the attending doc got me right into the CT (after I had to prove to the IV tech I could start my own IV).......CT with contrast of neck done.......sitting in room waiting......doc comes in and informs me they "saw something questionable".....but were going need to do a second CT of my whole chest....this one would also require contrast....thats when I knew I was FCUCK'D!!!
Having been around the medical world long enough to know you never give a patient two rounds of contrast in short period of time unless absolutely HAVE TO......lucky for me they knew enough to give me a few liters of iv fluids to flush my kidneys before slamming me with the second batch of contrast......I can thank my beautiful, healthy functioning kidneys to them!!
So just like you see in the movies, sitting in the room (size of a closet) waiting waiting waiting.......but never "making the deals" you know "Please  (fill in your own  blank) if you  get me through this I promise to be......to do......to stop......to start......."  Never really was my style - well except small kid days worshiping the porcelin god after too much adult beverages!!
The attending walks in......and no joke he got tears already forming in his eyes.....so I immedietley stop him in his tracks, ask "what they never teach you about that in doctor school" - get a laugh out of him and then I tell him its ok to tell me I have cancer.......and that he does.
"You have  a 6cm mediastenal mass and there are other nodules spread around your chest"........everything goes silent.....slow motion........world stops spinning......turns upside down.....I'm floating away........the SLAM I am back in my own body, everything is louder, brighter, smellier........and the tears come......
Pulled my self together, talked options of being admitted to Castle Hopsital on the spot, but explained I need to get home and get "things in order" ...promised to check into the hospital in the morning and they knew I meant The Queens Medical Center......If you have cancer in Hawai'i thats where you go.....oh and I made sure I got a script for some Valium!!!
Had a good long talk with the nurse, got my stuff together and off I went. When I hit the mat and the auto doors opened I was hit in the face by that warm breeze and had confirmed that reality had been forever changed.
First phone call....my sister and best friend Amy......that is the hardest phone call I have ever had to make. Her calming energy and spririt immedietly calmed me. Explanined and asked her to start breaking news to family. Was too much for me to handle at the time. Of course she took care of it.
Second call to two of my besties at home, leting them know what the outcome was and that I was on my way home.
Calm quiet, reflective drive home.....I think they call it a state of shock?!?!
Stoppped for my Valium on way and as was pulling out of lot recognized the beautiful warm smile of a close friend I don't get to see as often as I would like. There she was, the perfect calming prescence I needed at just that moment.....I am not sure how I dropped the news, I think I just flat out said it.....got the hug I needed so badly spent time talking little bit story, then I was headed home to Hakipu'u.
Once home I am not sure what flowed faster the tears or the Jaegermeister....... phone calls to family, close friends, texting, talking. More laughing crying with the besties......reality was setting in.....

Sleep that night, not too much.....up early cleaning house, packing a bag, making phone calls, facebooking, cleaning more, orgainizing, paying bills.......anything to put off going to the hospital......my last ditch effort at denial.
Terry came and got me and off we went one of the most beautiful drives on O'ahu headed for the last place I wanted to be going..............

OK.....cliff hanger time (thats how I get you folks keep coming back right).....there is plenty more to come but its late, my body and brain are tired, and some of this "stroll down memory lane" not so much fun!
I will do my best to get the story told quick and get us up to present day as I move forward on this my lifes next adventure.
I have said it before and will say it again and agian........I am so blessed to have so many on my side, behind my back, caring , supporting, loving......
I will do my best with this blog,  like my new reality some days are going be good, some not so great, some total shit and other pure excellence.....but you know me, I am going to be honest, open and forthcoming through all of this......I have been "trained" by too many kids that I have battled along side for their lives to let them down by not being honest.
After all, If we all truly lived a life of honesty would this world be a very very different place.
Lots of Love and Aloha to you all!!
P

 The cure for anything is salt water - sweat....tears....or the sea. - Isak Dinesen