Thursday, November 15, 2012


Almost a whole month gone by since the news of my remission (aka kicking Bob's ass!!)
Sorry I have not been more on top of this blog and keeping everyone "in the loop".
I apologize for the "cliff hanger" cardiologist appointment......
To be honest I have spent the majority of the past month ASLEEP
There have yet to be any big (or small) no need worry if anyone thinks they missed out on them.....
To be honest I am frikken EXHAUSTED.....
My days usually are...up by 7 - 8 am putter around and do the best I can not to be asleep again before noon. Once I do go down for a nap, I am usually "out" until sometime in the evening......get up, scrounge dinner......little mental masturbation in front of the TV......then to bed for the night.
I have had some "good days" where I get myself up and out of the house, see friends, go for a walk....but I usually wind up WIPED OUT for the next day or so.....
I am still in a good amount of pain, especially when trying to take a deep breath or lay down flat.....
At the cardiologist appointment he said he "wasn't surprised  by this and given the damage that was done to my heart he expects it could be up to "18 months" before the pains are "gone" and my heart is "back to normal".......he went on to say "one day you will laugh at a joke and just realize the pain is not there".......
You know this is NOT ACCEPTABLE in "my reality"......I am in remission .....isn't it supposed to be silver lined clouds, rainbows, unicorns and fucken skittles raining from the sky?????? 
It is not supposed to be me taking 5 hour naps through the day and wiped out after a trip to the grocery store
Closer look at my Angio CT (the catscan of just my heart) actually showed 4 of my arteries with "up to 50% stenonsis (blockage)" but my cardiologist didn't give this too much attention....he kinda sorta talked in circles around it....went on to talk about my cholesterol levels, which we never checked and turn out are now high (they have always been stellar in the past).....but given the fact that my cardiologist was leaving the country for 2 months he gave me a "just in case script" since he wouldn't be here, I would have the results sent to my house and if the levels were above a certain number I could start myself on the meds and I would see him some time in February.......
Maybe he is right.....we know my body went through hell and back in the past 10 months and I am sure it needs plenty of time to heal......but something just isn't sitting well with me about all of this as well as his "lackadaisical approach" to everything
Hundreds of times I have told the families of my patients...."just because a doctor says so, don't mean it IS SO.....if you ever have doubt or second guess or questions you feel unanswered find another doctor"
Time to follow my own advice....I know my body.....I know the pains I am feeling and the fact that the lethargy is far greater than it was even when I was on chemo......So I am going through the motions of finding a new cardiologist for a second opinion.
Will let you know how that goes.......
"Perk of being in remission".......I GOT MY PORT TAKEN OUT!!!!! 
I totally scored by having mine placed by a cardio-thoracic surgeon when they did my surgical biopsy back in the same doc to remove it 
Total SCORE!~!! This meant I got to go to the OR for the procedure.....and had an anesthesiologist.....who was kind enough to give me nice big fat doses of Fentanyl, Versed, and Propofol.......I don't remember a thing!!!!! 
Suck ass part of having the port removed was being banned from going in the water for the past 2 weeks.....small price to pay hindsight I wish I had gone to get some more ink work done on my back tat......
It is so time to get this baby finished!!!
I am still in a "battle" with the peripheral neuropathy, tried weaning myself off the anti-epileptic meds that are being used to treat it (was wondering if they were exacerbating my fatigue/sleepiness) but one missed dose and a few hours later my lips are numb and my finger tips get so numb its painful........once again we are back to "give it all time to heal".......
Have gotten myself off most of my other prescription medications......still needing the narcotics to help with the pain in my chest at night, been a long time since I have slept through the night.....
But one foot in front of the other.......soon I pray all of these daily pills will become a distant memory.

So there's the "facts" where I am at physically etc etc etc

Now lets talk REMISSION 
Just as I talked about it when Alan went into remission:
"REMISSION" of the trickiest words I have ever heard......when you hear it there is reason to celebrate  breathe a "sigh of relief"...the first thoughts for most are "CURE".......remission DOES NOT equal cure.
Remission means you have no evidence of disease activity.... for sure there is reason to celebrate, "no more chemo"..."no more radiation"....ports removed etc etc etc 
But for the person who enters into this new reality called "remission" there is the scans every 3 months for the first year to detect disease re-occurrence, then it becomes scans every 6 months and so on and so on....most medical professionals will not use the term "CURED" until 5 years has passed without any detectable active disease.....NOT being a "big downer".....just stating the facts and I think something important for folks to be educated about when they hear the term remission.

What the "reality of remission" has meant to me.....
Given the way I was feeling physically I not for one second walking into the oncologist office on October 22 expected to hear the word "REMISSION".....I had mentally prep'd myself for round #2 of Chemo.....played the "would I/wouldn't I do it" game.....knowing full well the wrath that would come down on me had I refused further treatment from all of you would leave me little choice but to push forward and fight through more treatments.....
The pure shock and it was PURE SHOCK , of hearing remission was equally as shocking as January 25 when I was told I had cancer.......
The difference is when you are told you are in remission you leave the oncologist office with a slip of paper reminding you of your 3 month follow up appointments.......
Unlike being diagnosed and being bombarded and overwhelmed with "support", "information", "how to ______ guides".......there is nothing to navigate you through remission......
One day I am Patrick with cancer....battling like a "warrior" in a life or death times looking death right in the face and beating it........Patrick with cancer = inspiring others......
Everyday looking forward to the saturation of love, support and attention......
Then BAM.......
I am "Patrick without Cancer"........
I wish I could say "Patrick Survivor of Cancer".....but I truly do not feel my battle is over yet.
Early on I wrote of this ride feeling much like a roller coaster......
It is only now that I realize the process of diagnosis....treatments.... leading up to remission, is just like the very start of every roller coaster 
It was like the slow moving up, always feeling like at any moment you were going to slip back a click or two (and in my case I sure did).......never thinking about what was lying in wait for you as you reached the very top and the ride really started
Screaming, laughing and wanting to blow chunks all at the same time....
That is what remission has been to me.....the exact moment the roller coaster car you are sitting in stalls at the highest get one second of quiet......looking out far its like you can see forever.....
And then the bottom falls out.......the speed increases....wind in your face....can not hear......its difficult to see the twists , the turns, the cork screws that lie ahead of you......
Just as you get your once again find yourself upside down, spinning out of control.
Everyone is happy, excited, ecstatic......."Its all over" ...."its all behind you know".....
I had an unexpected opportunity to spend a few days with the one person who has had the biggest effect on me and on my life and he asked
Now that I have been given this "reset button on life" who am I going to become......

Who am I going to become?????? 
I could not answer the question , because to be honest I am just now in the process of realizing and acknowledging who I AM  at this point.......
What are my plans for "the rest of my life"?????
At this point I am still just taking things one day at a time foot in front of the other......
I am out of work until at least my follow up scans and appointments the end of January.....
Looking forward to spending the holidays with my family ....Thanksgiving here with my family in Hawaii and then Christmas with my family on the mainland.....

There is still the battle with social security........
The overwhelming hospital/doctor bills that come daily and are now being turned over to collection agencies.....

Biggest of all .....the battle to get my body back to a functional point, getting myself back to working, 
moving forward from this all......
Trying to figure out just what was the reason I went through all of this....what was the purpose....what do I learn from it and take with me as I move forward in my life.......
How (can I) continue to be an inspiration to others.......
Paying forward all of the LOVE, SUPPORT, CARING AND GENEROSITY...

I asked the question a while back "what is life after being told you are in remission" .....the REALITY other folks don't see.....
THANK YOU to a wonderful friend and support Beth for this response:

"To answer your question about worry and waiting for results of scans... I am 6 years out from treatment and 7 years from diagnosis and I am still paralyzed by the fear when it is time to schedule my scans...much less wait for the news of the scans! I want to puke and really can't function until my oncologist calls with the results!! I try to pretend it doesn't bother me but it consumes me!! Every pain or change in my body brings thoughts of cancer....I hope that some day I can say that it wont consume me but still does!! No one really understands this....and no one wants to talk about once again it is the unspoken reality we live in!"

Thank You Beth, not only for being a wonderful support and source of inspiration to me when I "needed it most"...but for your honesty and "raising the bar" for me........
Bob is GONE.......
WE ALL KICKED HIS ASS ( I truly could not have done it without all of you) 

But now it is time time to move on into life .....
The "cancer is gone"......Life goes on.....
You have been willing to follow me on the ride I took through hell....Hopefully you will be willing to stick by my side as this ride continues......
Hearing the word REMISSION does mean life goes on......but it is a different reality.
A reality that just as Beth pointed out folks don't talk about......
For most they hear you are in remission and they think "ahhhh.....its all over for you"
I am going to do my best to continue to take you all along on this "post-cancer"/Remission journey I am embarking on......I hope to continue to educate, inspire, entertain....most of all keep a dialogue going .....
I would like so that no one that has ever gone through cancer, gotten through treatment, heard the words "you are in remission"....ever has to feel like "No one really understands.....and no one wants to talk about once again it is the unspoken reality we live in!"
To those of you that are reading this and are cancer survivors I would LOVE to hear you stories of survival, anything you would like to share, please feel free to send you stories to me at
I will continue to "tell my story" as long as folks seem interested....
Tell my story of SURVIVAL.....
As I wrap my head around my new realities, the ups the downs the all arounds ......continue a dialogue 
Something I never realized.....a Cancer diagnosis does NOT go away with the word REMISSION...hopefully those of you that have accompanied on this journey will continue to follow the story as it unfolds.....I will continue to do my best to relay it to you, the good the bad the pretty the ugly.....

As always, a million mahalos to you all for your love, support, caring, encouragement and generosity

Living In The Moment.......

Tuesday, October 23, 2012

Next Phase.....REMISSION.......

Did he just say "intermission"?????? NO he said 


Yup Yup you heard of yesterday October 22, 2012 I have been officially declared "in remission"...
NO signs of active cancer showed up anywhere on my PetScan.....


Frikkah didn't know who he was dealing with when he picked this fight!!!! And wasn't just me being the Warrior....was all of you "MY ARMY" my my back....pushing me forward...cushioning the blows....picking me up when I fell down.


SHOCKED????....yes I still am today. Going into the appointment feeling as shitty as I have been feeling lately I was no way expecting to hear "remission" ......I had prepared myself for "chemo round 2" was running over an hour behind so the sit in the waiting room felt like weeks...luckily I had Alan there to "entertain me" ....keep me calm....
When my Oncologist smiled and said "we did it" ..."it's all gone" ...."you are in remission"
I think for a few moments everything inside of me shut down....
then came flooding back like a slap in the face WHAT DID HE JUST SAY?????
This can't be real????
It was when I looked over to Alan and saw his eyes "wet" that I realized I had heard correctly .....
Luckily no one wanted to be the biggest pantie in the room so we held back our tears.....good thing too cause I don't know if mines would have stopped once they started.

For those that don't know the story, I met Alan in the hospital shortly after I had been diagnosed in January. Alan was a close friend of a friend and had been diagnosed with Stage IV NonHodgkins Lymphoma 2 weeks prior to my diagnosis. (My diagnosis oddly enough came on Alan's Birthday)
A bit after being discharged we started spending time together and right away became good friends.
I think I talked a little about that in a previous post...what a blessing it was to have someone I could talk to that was "speaking my language" and going through the same SHIT STORM AS ME.
Through treatment we managed to get out hiking, go camping, sailing, even a 6 mile hike in the middle of the night to the flowing lava of Kilauea along with 2 other amazing friends Ken G and Moriah who stuck by our sides and are now stuck with my friendship for life.
I smoked him when it came to finishing Chemo first....but he did have the unfair advantage of having one extra type of chemo that had to be given separate and I cut him some slack and took on a few weeks of radiation to let him catch up.

I was HONORED and STOKED to be at his side when his oncologist gave him the news of his remission 
So was equally HONORED and STOKED when he was sitting next to me as I got my news

Shocked...... I think all I kept saying to him was 'WE DID IT!!!" "WE DID IT!!!!"

I've said all along through this journey that there have been so many blessings that have come my far one of the biggest is the gift of this friendship.....
a bond unlike any other.....
(someday I will write our "whole story"'s got major hit movie all over it.....just waiting to find a #6)
So phone calls were made, small kine tears were shed, texts sent, facebook updated .........lunch and dinner celebrations with great friends had.
it was a crazy whirlwind......I crashed hard last night.....slept long and hard......
Today oddly enough felt very similar to that day after I was diagnosed.......
I have been NUMB all day....walking around I think still in a state of shock....just kinda going through the motions.....
Had an appointment with the surgeon who put in my port....arranging an OR time to remove my port  in the coming weeks.

Wandered around the grocery store....not really sure what I was doing there (but stoked to run into my great friend Malia - on of all days her birthday.....I got one of those hugs that kinda brings you back to reality)

REMISSION REMISSION REMISSION.......I just keep going over it in my head......seriously>> ??? NO jokes??? I really beat cancer????
It is almost as shocking as being told you have cancer, but WAAAAAY BETTER shocking!!!!!

I have been floored (once again) by the response to the news and the outpouring of love and support.....came close to crying.....still haven't done it yet.....need to .....
but this cry will be unlike any other cry of my life......this will be the most cleansing cry I have ever had...feel it in my core that I need to be in the ocean to do it......
guess where I will be at sunrise tomorrow.
So I am still feeling pretty "beat up" and fatigued.....My oncologist says he's not shocked ....body has been through A LOT going to need time to heal......but unless anything out of the ordinary pops up I will not see him again for 3 months at which point he will re-evaluate me for potential return to work.
As for "the heart issues"......I "got" a copy of the report from my ECHO and the CT of my heart......I don't see my cardiologist till Tuesday, but to hell if I was gonna wait!!!
Seems the CT shows about a 50% blockage of my right coronary artery....with calcifications that make accurate percentages hard to decipher.......the pericardial effusion is still present , but per the ECHO it is has decreased markedly.

Sooooo a half blocked coronary artery......could it be that getting cancer , kicking cancers ass led me to a point where we detected this early , preventing me from having massive heart problems down the road?!?!?!?!
Weird how things work......will not focus too much on it.......or try ask too many "medical friends"
Will wait for Cardiologist on Tuesday and see where we go be honest with you this whole adult patient treatment thing is so far out in left field for me......and the last thing I want to do is become a "medical google nut"!!

For now I would like to just spend the next few days taking in this "new reality" this "new phase of my life"

Was funny how everything I saw through my eyes changed when I was diagnosed and then yesterday sitting with friends I realized it happened again......."remission" changed the way I see the world......

Going to cut this blog short.....TIRED!!! 
Promise to update here soon!!!
going to for sure be a lot of thoughts I am going to need get out there.......


The "celebration" of my remission has been bittersweet ......Can I ask you to please keep my "bestie" Terry in your thoughts.....Terry is with her folks on the mainland and yesterday just a few hours after I was able to share my good news with  she and her mom , her dad who had been admitted to hospital last week, suddenly passed away. David too was a WARRIOR beat the shit outta his cancer and was 8 years past his battle.


Monday, October 22, 2012

T'was the night before..........

WOW!!  "The night before" came fast.....tomorrow is the "big day"
Not going to rehash all the questions that have been following me around bogging me down....rather spend tonight reminiscing on the good things that have happened over the past 10 months.
I have talked about it before and will talk about it again and again and again......the blessings I have been receiving the past 10 months are mind blowing.
From the very moment this all started......January 25, 2012 folks were right my my back.
The overwhelming amount of love and support that enveloped me around my time of diagnosis blew me much LOVE.....and in so many ways without the cancer diagnosis what a waste it would have been to go through this life never realizing the impact and changes I have made....again I will matter what .....if my "time here is done" at least I know I left my mark in this world and am so happy and so thankful to all of you that reached out to me to let me know that I have in fact made a difference and that this world truly has been made a little bit of a better place because I was in it.

From the start with so many stepping up and being BEYOND GENEROUS with the chipin account, and the other generous gifts that took the burden of worry about losing my place to live , losing my independence.....losing everything......I AM SO VERY THANKFUL TO YOU ALL ( and I still have yet to finish sending my gratitude to each of you personally - your head would explode if you saw how long the list is!!)
The generosity and support continued through out. Emails, Facebook messages, cards and packages in the mail. 
So blessed to not only meet new and amazing folks in my life ......for sure one of the best friends I will ever know and who without him by my side, my fellow warrior, my sometimes inspiration, my sometimes the push I need to hold my head up...... I would have been like a fish out of water these past months....THANK YOU ALAN!
But, also to be re- connected with so many wonderful friends from my past, friendships that span our globe.
And to be so blessed to have the bonds of family and friendship of those in my life strengthened beyond anything I could ever imagine.

One of the most amazing things of all of this was the benefit/fundraiser my friends and family threw for me on August do I even begin to describe that night.

So much love contained in one place....
 I  was overwhelmed by the group that took on the task of putting the entire event together
A HUGE MAHALO TO Noelle, Rudy, Stephanie, Marita, Allison, Shawna, Deroy, Kolea, Simon, Moana, Mali and everyone else not in the pic that worked so hard to make the night a success!!

I know everyone who worked so hard putting everything together as well as myself were absolutely blown away by the amount of folks that showed up at the event.
Folks I would have never imagined, folks I had never met and folks that I knew without a doubt would be there to support me no matter what.

I guess I can let the pics help tell the story of the night.
MAHALO  to Noelle my wonderful friend and owner of "It's A Wild Life Photography" ( for all of the amazing photos and the constant love and support !
Need and amazing photographer for a family sesh or event check Noelle out , yesterday she did an amazing job photographing my hanai brother Dustin's marriage to Asia.

MAHALO  to THE VENUE for giving us the perfect spot to have the event!!!

MAHALO  to my brother Koa Johnson and his beautiful life partner Ann Marie for decorating the spot with their impeccable floral arrangements from The Flower Farm ( Seriously anyone on O'ahu looking for flowers for any event check them out, you will NOT be let down!


The silent auction was a HUGE SUCCESS!!!! And YES in the coming week I will let everyone that was interested in participating but couldnt be there how they can get one of my canvas prints delivered right to your front door......trick is your going to have to match the highest bidder!!

MAHALO Deroy for filling in as "DA BEST EMCEE EVER"!!!

MAHALO to a wonderful friend and someone who has seen me through some of the roughest times the past  months, Eric Keawa performing with his daughter Pomaika'i and his other performing 'ohana
MAHALO TO Mailani, her 'Ohana and performers

Huge MAHALO to performers John Yamasato and Darin Leong (sorry can not find pics of you guys performing)
 LOVING my Feeney 'Ohana!!

 Two amazing and very special ladies in my life!!

 Nice my bookends huh??\


 My Ocean Paddler TV boys

 receiving the love from my sister Arna

Huge LOVE from my "honu 'Ohana"

PICU 'Ohana
Never going to be a serious pic of the 3 of us!
So much love , so much support....sooooo many pics 
Here is the link to an amazing video Noelle put together of all some of the pics for those that haven't seen it

I wish you all could have been there......trips me out to think that if you ALL were to show up we would probably have to rent out Aloha Stadium...and the LOVE still woulda spilled over
how the hell did I ever get so lucky to be on the receiving end of so much love!!!

I wish you all knew how much your generosity and support has had a direct impact on the past 10 months....the hospital bills are still mounting and climbing...still in the battle to receive my Social Security Disability Benefits.....state decides I can live on $10.00 a day ( NO SHIT) for food - HUGE MAHALOS  to the "Mangia Mangia Club" for helping with that!! 
and $300 a month to pay bills.......I have to keep asking myself WHY have I paid into the system since I was 16???
But thankfully for me KARMA is not a "bitch" 
Apparently along the trip that has been my life I have put enough good out there that KARMA  has turned around and blessed me with the support and generosity  I have received from all of you.
I am ecstatic that I have been able to pay the rent on my house and keep the bills paid.....none of which would have been possible without all of your generosity and support


So it's past midnight here in Hawai'i.....should try to get some rest for tomorrows big appointment
.....nothing I can do now to change the results that I am going to here....but will be nice to get some kind of answers and ideas.
Wish I could say I was going to go in standing strong, ready to take on what ever they want to throw my way this time.....but truth be told .....I am EXHAUSTED  and SCARED SHITLESS and just want this to all BE OVER.....
Frick....just planning Thanksgiving and Christmas this year will be nice.!!


Special Prayers out to Terry Marmie and David....wish I could be with you......

Lisa you are in my thoughts all the time and wish I could be with you in the coming weeks.....


"Why did you do all this for me?" Wilbur asked. "I don't deserve it. I've never done anything for you"

"You Have been my friend," replied Charlotte. "That in itself is a tremendous thing"

--E.B. White, Charlotte's Web

Friday, October 19, 2012


"I must say a word about fear. It is life's only true opponent. Only fear can defeat life. It is a clever, treacherous adversary, how well I know. It has no decency, respects no law or convention, shows no mercy. It goes for your weakest spot, which it finds with unerring ease. It begins in your mind, always. One moment you are feeling calm, self-possessed, happy. Then fear, disguised in the garb of mild-mannered doubt, slips into your mind like a spy. Doubt meets disbelief and disbelief tries to push it out. But disbelief is a poorly armed foot soldier. Doubt  does away with it with little trouble. You become anxious. Reason comes to do battle for you. You are reassured. Reason is fully equipped with the latest weapons technology. But, to your amazement, despite superior tactics and a number of undeniable victories, reason is laid low. You feel yourself  weakening, wavering. Your anxiety becomes dread.
Fear next turns fully to your body, which is already aware that something terribly wrong is going on. Already your lungs have flown away like a bird and your guts have slithered away like a snake. Now your tongue drops dead like an opossum, while your jaw begins to gallop on the spot, Your ears go deaf. Your muscles begin to shiver as if they had malaria and your knees to shake as though they were dancing. Your heart strains too hard, while your sphincter relaxes too much. And so with the rest of your body. Every part of you, in the manner most suited to it, falls apart. Only your eyes work well. They always pay proper attention to fear.
Quickly you make rash decisions. You dismiss your last allies: hope and trust. There, you've defeated yourself. Fear, which is but an impression, has triumphed over you.
The matter is difficult to put into words. For fear, real fear, such as shakes you to your foundation, such as you feel when you are brought face to face with your mortal end, nestles in your memory like a gangrene: it seeks to rot everything, even the words with which to speak of it. So you must fight hard to express it. You must fight hared to shine the light of words upon it. Because if you don't if your fear becomes a wordless darkness that you avoid, perhaps even manage to forget, you open yourself to further attacks of fear because you never truly fought the opponent who defeated you."
- Yann Martel, the novel Life of Pi

Stuck in limbo....

So I this entry I am just going to "cut to the chase" as they say...(ever wonder who the hell "they" are when folks use that "as they say line"??)
"Test" are done....funny you think test in high school were the "most important tests of your life"......then there are the pre college exams.....blows those baby high school tests right out of the water.....then there are the actual college tests which made the pre admissions tests seem like childs play......yet everyone of these tests is designed to be a mile stone.....a "stepping stone" so to speak, each designed to prepare you for what lies ahead of you......pass = great move forward, fail = sucks but can try again till you get it right.
NOTHING in my life has ever prepared me for the testing that I have gone through since this past Friday and worse than that no one has ever given me the lessons or tools that would help keep my sanity while I await the result.....if there is a purgatory I imagine it is something like this state of limbo I feel like I am caught in.
These are no longer Pass/Fail tests.....there was no studying in the world that could have prepared me for them and yet 
Would like to think that if something was "terribly wrong" I would have received a phone call (you know like they show in the movies) truth be told, by doctors probably haven't even looked at my results and probably wont until just before I head in for the results on Monday.......and besides what are they going to do call to tell me "you have cancer".....that was so "last season"
Been feeling a lot like that lately , like a TV series that went on hiatus, things got quiet, some of the actors have left the show all together, some have moved from supporting roles to main character roles and there have even been some new additions......"fans" got quiet and now all my "fans" are eager for the "season premiere"......
The episode called "THE BIG NEWS....."

So, what's been happening during "hiatus".....not a whole lot. 
The physical pain has become a constant battle, just the physical act of lying down or getting up from a lying position can cause pain enough to make me cry out....I try to get up and out of the house, but most days I just sleep the day away......seriously up between 6-8 AM then back to sleep on the sofa by 10-11am and I usually wake around 4pm.
I have found that days out, like Monday and Tuesday back to back testing left me more tired and in a whole lot more pain by Wednesday than usual.
The crazy thing is I just can not figure out what the hell is going on.......It is like there is a constant fire burning in my chest then at times there is a sword being stuck right through the center of me.
and of course being the ICU nurse I want answers and I want them NOW !!

Is it the lymphoma taking up more space in my chest??? Is it the damage that was done to my heart worsening?? Is the lymphoma gone...but now this is how I am going to be left thanks to "what cured" me?? Was I misdiagnosed......did we miss something.....should we be testing for this.....what about that....should I risk what money I have to "survive" on for "alternative treatments" that in the end may give me survival.....
Who am I any more.....
I think its understandable and probably to be expected that this is all taking a bit of a toll on me mentally.
Depressed.....yeah I think so. Suicidal NO WAY....but wondering if death would be a better route than living with all of this pain, sidelined - unable to do the things I love......watching everyone else move on.....
I have been "living"  on Google trying to figure this all out. Hate to admit it but spending more time crying than laughing

Waiting for test results that can potentially affect you life expectancy or the possibility of more torturous treatments meant to prolong your life (irregardless of what they do to the quality of it) can take a toll on you.

And for those of you that like to remind me that there are others out there there that have had or have it worse than me, that like to tell others I should really just "suck it up" and "stop my whining" 
That is your shit, so don't put it off on me.....
this is MY LIFE and my life has been turned upside down and inside out in the past 10 months.
This is about one person ......ME and MY battle to the death...either the death of my cancer or the death of me.
Sorry, I am realizing I really don't have a whole lot to say in this entry......I keep writing and deleting.....writing and rather than "force it out" I will chalk it up to just being exhausted - physically and mentally.
Wanted to at least give you all the heads up that testing is done....results will be in Monday....I will need some time to talk to folks in person/on the phone so will relay the results here on Tuesday.....

One day at a time, one foot in front of the other...

As always THANK YOU for all of your constant caring, support and generosity. I truly can not image what the past ten months would have been like had it not been for ALL OF YOU!!


A message from my great friend Jill relaying something my little 9yo buddy/her son had to say:
"At dinner tonight Joey said he thinks he discovered the cure for cancer. I said what is it? And he said LOVE"

Wednesday, October 3, 2012

What's going on........

Hard to believe almost an entire month has gone by since my last blog.......I apologize to my "fan club" (thanks Carrie ) and to everyone who has been wondering what has been going on.

That seems to be the theme of the past month for me....."WHAT IS GOING ON"......I guess I should have never started whining about "what I was going to do with myself for the 3 months between the last radiation and my follow up scans"......the time passing has been anything but uneventful......
Last blog entry was all about the new onset "cardiac issues" I have been facing......
I continued feeling beyond fatigued, sleeping up to 18 hours some days.....usually after putting on my "healthy face" and heading to an outing or meeting up with friends......
Had my follow up visits with my radiation oncologist....she tried to assure me that the radiation, although causing the burns to the linings of my lungs did not do anything to my heart. Me with my oncologist the same day....once again we sat staring at each other scratching our heads in wonderment over just what the hell my body was doing......typically if there is going to be damage to the heart secondary to chemo, is "typically" shows up sooner rather than later......
I am still pretty sure there was damage done by the chemo that was exacerbated by the radiation....but I guess we will just never we said "add it to my atypical list that started day 1 and seems to continue to be growing.
I was remaining "stable" with lower blood pressures and increased heart rates and the pain continued.....actually got worse.
By September 25 I could barely take a semi deep breath without feeling as if someone had just "Pulled A Buffy" (how I decided to describe the pain when asked) and stuck a stake in my chest like a I was a vampire. 
Luckily this was the same day I had a follow up appointment with my cardiologist, we opted for a challenge/test for lack of better description and did a one week high dose steroid pulse in hopes of decreasing some of the inflammation which would hopefully help with the pain ....meaning I started out on oral steroids at a high dose for 2 days, cut the dose in half for next 2 days and continued like that for 8 days.
In 24 hours the pain went from being almost unbearable and me popping oxycodone like they were candy, to far more bearable and almost unnoticeable except with a lot of exertion.....what a RELIEF !
I was feeling like "myself" again...had the added bonus of the "false feelings of wellness and increased energy" high dose steroids will give you....was up with the sun for my walks again....things were looking up.
By just about the end of the steroid pulse the pain was starting to return........I found myself in bed the past few days trying to decipher was the pain emanating from my heart, the burns in my lungs or could the tumors in my chest be growing at a rapid rate like they did in January........ described as a TOTAL MIND FUCK!!!!
What the hell is happening inside of me?!?!?!
Today I am back to feeling like someone "Pulled A Buffy" with each deep breath, not up until about 8 am then struggling to stay awake and not nap by noon.....(I usually fail and the napping usually takes over)
Had a follow up with the cardiologist yesterday.....he brought up the possibility of staying on continuous steroids.....something I am TOTALLY AGAINST...for many reasons ....and I am pretty sure my oncologist will agree.....we will discuss at our next follow up appointment.
Do not want to keep trying to manage the pain with NSAID's and wind up with my stomach all tore for now I guess it will be rest and my good friend  oxycodone.......
I keep getting "advice" from folks about how taking so much can be so "bad"......
Am I becoming "dependent" on them......HELL YEAH....I am in pain and they make the pain better ...
Am I addicted?? HELL NO!!!! I love having a day go by and realizing I didn't take any narcotics....
There are other means on anti-inflamatory herbal treatments I am also taking....was religious with my juiced olena, but my source ran out now switched to turmeric either in tea form or pill/powder form.
One day at a foot in front of the other........
So September was the month of what the hell is going end of October questions should hopefully be answered.
At last onco appointment we opted not to wait until November to do my follow up between that and my cardiac tests October is going to be a busy month....
Oct 9: CT Angiogram with Calcium score to check my heart for coronary artery disease
Oct 12: Follow up Echocardiogram -show us how well my heart is functioning and what the status of my pericardial effusion is
Oct 16: Full Body PETscan and CT scan to see how the cancer responded to the radiation.

OCT 22: "DA BIG DAY"....follow up appointments to review results of all my scans....

So much for worrying about being "bored" huh????

So yeah that is what's been happening physically .......
Mentally it has been a roller coaster.....somedays the depression is overwhelming.....a song, a picture, a quote can send me in to a loooong bought of crying. There are those days where I do want to just "throw in the towel" ...."wave my white flag"....say "enough is enough".......
Luckily those days/moments are short lived and I can usually pull myself up...or there is someone around to give me the swift kick in the ass I need......

The past month hasn't been all "DOOM AND GLOOM"
There have been plenty of highlights and good news.....
One of the biggest highlights for me was Sept 11 when Alan was told the his scans show he is in remission, there is no detectable cancer in his body
Alan and me making our "suck it cancer" toast...

"REMISSION" of the trickiest words I have ever heard......when you hear it there is reason to celebrate  breathe a "sigh of relief"...the first thoughts for most are "CURE".......remission DOES NOT equal cure.
Remission means you have no evidence of disease activity.... for sure there is reason to celebrate, "no more chemo"..."no more radiation"....ports removed etc etc etc 
But for the person who enters into this new reality called "remission" there is the scans every 3 months for the first year to detect disease re-occurrence, then it becomes scans every 6 months and so on and so on....most medical professionals will not use the term "CURED" until 5 years has passed without any detectable active disease.....NOTbeing a "big downer".....just stating the facts and I think something important for folks to be educated about when they hear the term remission.

Was I completely STOKED when I heard the doctors tell Alan he was in remission HELL YEAH!!! I was holding back the tears like a big pantie....HELL YEAH!!!!
Am I looking forward to hearing the word remission on October 22 at my follow up.....HELL YEAH!!!!
But again remember "remission" is a tricky word and for those of us for whom it becomes reality.....I think the "cancer reality" is ever present, lurking in the shadows.....
Does the feeIing of the "grim reaper hiding in the shadows" during treatment get replaced by "cancer lurking in the shadows" during remission????? I would love to talk to some long term survivors to hear how long the feelings are there.....does it get easier with each negative scan??? 

Another highlight of September was the Honolulu Cure Search Walk To Benefit Children's Cancer Research 

I was honored and humbled to give a testimonial at the walk......took a long time to get the words out and on paper in some sort of make sense be honest I was rewriting the whole thing in a panic sitting in the parking lot the morning of the walk......I think most have seen it but in case you missed it and are interested here is the link to the testimonial......
Thank you Rudy for capturing it on video (NO I have NOT watched it myself!!)

Was a day of very mixed emotions that day and in the weeks leading up to it. Writing the testimonial and deciding what to talk about took  me to many places and many memories I haven't visited in a long time....the going down the list of patients I have known that are dead, the list of patients I have known that are living ....both lists inspiring me did my life get here???
I used to go and listen to kids and parents give testimonials.....never imagined I would be giving one as someone with cancer myself......
LOVED seeing so many of my good friends there to show support for the walk and give me the little bit of added  courage needed to get up and speak to the crowd..

(Mahalo to Stephanie, Natalie and Dianne for the pics)

A few days after the walk was another bonus of good times in September when my great friend Nick, who I haven't seen in almost 20 years arrived in Hawai'i for a visit

and AFTER.....

Had a great time catching up.....plenty of laughs reliving memories of long time ago!!! 
Got to take him to most every corner of O'ahu...even if I was running on low battery "old man status" hiking, no surfing, no sup'ing .....but still plenty of fun.

October = Breast Cancer Awareness Month
Bittersweet that a week ago my dear sweet beautiful friend Lisa was diagnosed with breast cancer.......I can't even type it with out the tears flowing and the anger taking over me........I can not say it enough or loud enough how FUCKING SICK AND TIRED I AM OF ALL THIS CANCER !!!
A fellow nurse who has dedicated her life to caring for others. Our paths have crisscrossed over the years, Chicago, Aspen and then Hawai'i......Although no longer in Hawai'i YOU ARE NEVER FAR FROM MY THOUGHTS LISA.


So that's been the ups and downs and all arounds for the past month.......
"can someone stop this ride I wanna get OFF!!!!"

I promise the next blog will be all about the benefit/fundraiser and trying to share the moments and crazy amounts of love that went on at that event...for sure deserves a blog entry of its own!!!
For those that asked we have figured out a way to make the canvas prints of my photography that were in the silent auction, available to you.
Also, there are still Patrick>Bob T-shirts left in most sizes, but going fast. You can still order them by clicking on the link to the right of this blog ....please enter the size(s) you would like in the comments/directions section when ordering.

I know I am also still very far behind on acknowledgements  mahalos, thank yous and phone calls!!! I will at some point get to all of you!!!
I continued to be blown away and as always thankful for  all for your continued love, caring, support and generosity!!


(ps if you don't comment I won't know you were here)

Sunday, September 16, 2012

Testimonial given at the Honolulu CureSearch for Pediatric Cancer Walk

Sorry never explained you can click on the orange link to see the testimonial....sorry to be confusing!!

Wednesday, September 5, 2012

Cant judge a book by its cover.....

This blog entry was meant to be about good , laughter, memories...wanted to tell you about the magic that happened on the evening of the Benefit/Fundraiser.
But it will not....instead this one is about new hurt, anger, fears, "newest reality"......

Going to have to take you back to Wednesday August 22.....Was up for my early morning walk, had been feeling a little "funky" starting Tuesday nite remember mentioning it to Shawna - but just thought is was the esophagus burns from the radiation still wreaking their havoc.....
Wednesday morning I get a call from my good friend Donna that she had an extra ticket to go visit the Doris Duke Estate - Shangi La.....this had been on my "to do list" for many many years......
Needless to say it was an amazing afternoon spent in the company of three beautiful wome, touring one of the most beautiful homes I have ever seen.......I was still feeling little "junk"....but you know me ....I ignored it, brushed it off and life goes on right????
According to everyone "you look fabulous" "you don't look sick" "are you sure your really sick" "the worst must be behind you".......and you know me.....I never like to let folks down.......that evening we all went to Mo's for a little house warming celebration for her and a birthday celebration for Donna.
Was a great time!!!!!
I'll be honest, at the party the pain in my chest was becoming bad enough that I was popping  my oxycodones like candy and following them with glasses of wine....I thought for sure I was just being a big pantie about my internal radiation burns and this would "knock the pain out" .........c'mon you truly believe I have never mixed my pain pills with a glass or two of wine????.....I'm a nurse for christ sake be glad I haven't been delving deeper!!!!......And anyone who would like to give me the lecture on "alcohol  being bad for the cancer patient" can SUCK IT~!!!!
If it's "OK" for "them" to inject poison in my veins and subject my body to radiation a few drinks here and there a'int gonna kill me!!!
Luckily that night Alan decided to accompany me back to Hakipu'u ( ie make sure I got home alright).....I will forever be thankful that he was there with me , forever regretful that I put him through what I did......
Wasn't long after we got home that the pain became a searing hot pain in my chest....felt like someone had shoved a red hot pipe down my throat into the center of my chest....felt like I was aware of every single spot that had received radiation and that all of those areas were red hot like lava.
Outwardly I am pretty sure it looked like one of those scenes out of a werewolf sure felt that way....I was writhing on the kitchen floor, couldn't lay back or lay flat because the pain would only intensify, was having trouble getting deep breaths in ......but I was fully aware of my decision NOT to call an ambulance and go to the ER in the middle of the nite.....was I think around 3:00 am when I finally nodded off...managed to prop the pillows up just right so I could lean a bit to the side and knock out...this would last 10-15 minutes before I would unintentionally shift and BAM felt like someone was shoving a hot poker through the middle of my chest.
I have to own up to the fact (and I will forever carry guilt and remorse for doing it to Alan) ...But I once again found myself in a position of begging to die....I just wanted OUT......NO ONE should ever have to endure something like that....I wasn't strong enough......I am too weak.....once again my body betrayed me.......
But then I started to think about the benefit/fundraiser my family/friends through for me.....I thought of the hundreds of folks near and far that were supporting me with love, caring and generosity.....I remember that room resonating with love......I couldn't very well let all those folks down.......If I willingly accepted the "warrior" tag a while back, I was going to have to be just that.......
This is exactly what I mean when I say that I get so much of my strength and comfort from all of you out there "the ARMY" that's got my back......near or far at times like these I call on memories of all of you to get me through, I tap into all of YOUR strengths to gather up my own courage......
Woke late the next morning, still barely able to move  without that feeling of someone sticking a red hot poker into the middle of my chest.......called my radiation Oncologist because all of this felt like it was emanating from internal radiation hot spots......she was "CERTAIN" this "COULD NOT BE SIDE EFFECTS OF THE RADIATION"
But asked me to head to the ER for at least a X-ray......
 the 7 hours spent in the ER makes things a bit fuzzy to remember. Same old same old to start......chest pain....move to front of line.....cancer in the chest.....gets you a room STAT......while waiting for my "room" in the ER they did an EKG in the hallway.....the look of panic on the techs face when the reading came out was classic FEAR and probably not something anyone other than another healthcare professional would picl up on.....I asked what she saw, but she mumbled something and walked around the curtain.......what is it about those damn curtains that make us healthcare workers think magically that patients can not hear us talking when they are just 2 feet on the other side.
I heard her say "this needs to be called in STAT".....when she came back around I "explained" that I am a PICU nurse , have many many years of reading EKG's (hell she was still getting her ass wiped by her momma when I first learned to read an EKG) so I "lightly suggested" she hand the print out over to me......
YUP.... I will admit it....I too was SHOCKED when I realized it showed an Acute MI......sure I had pain radiating down my left arm and across my lower jaw line....but c'mon NO E'FFING way I was having a heart attack.....I calmly and quietly asked her to run another EKG
Although not "normal" this one did not show signs of an MI (myocardial infartion/heart attack) but I was throwing a funky rhythm and had sustained tachycardia (high heart rate) accompanied by hypotension (low B/P's) 
This was new for me.......I am used to being a little "anxious" when going to the ER and that explains the high HR, but I never get the lower b/p's until they start spanking me with the Morphine or Dilauded......
So......was off to yet another CT........and the realization that in just a few short weeks 

Turned into this.......

They did a STAT CT of my chest which revealed that my pericardial sac/pericardium (the sac of fibrous tissue that surrounds the heart and roots the great blood vessesls) was showing signs of damage and the inner linings of my lungs were showing signs of radiation burns......The "damage" to my pericardium was causing fluid to collect in the sac....this is known as a pericardial effusion....
A pericardial effusion is an abnormal collection of fluid in the pericardial cavity. Because of the limited amount of space in the pericardial cavity, fluid accumulation leads to increased intrapericardial pressure which can negatively affect heart function. Also known as cardiac tamponade.
BAM -----ANOTHER admission to the hospital......but at that point I was too tired (and scared) to put up a fight about it......
I guess my "fears" were pretty evident to Alan .....he got a cot brought to my room and stayed the night with me......I will forever be thankful for that .......I don't care who they are, how strong they are, how much they deny needing anyone there.........ANYONE you know that says they don't mind being alone in the hospital over night IS FULL OF SHIT!!!!! I would almost be willing to go out on a limb here and say if your friend, family, loved one is spending the night at a hospital DO NOT give them the option of a "sleep over" just let them know "THIS IS HOW IT IS GOING TO BE!!!"
Someday I will go into more detail of how Alan and I met in this crazy fucked up cancer world we live in, The "cancer Bro-mance" we got going on and what a blessing and gift his friendship has been to me.....That's going to be a whole big blog in itself and probably deserving of it's own screen play in the end (kinda like 50/50 meets Dude Where's My Car - for sure no bullshit Beaches action here!!)......wonder who they would cast as me???

So there we were back inpatient, luckily on the 7th Floor Diamondhead Tower ......the place where everyone knows us, and are always confused when they walk into the room and see Alan and I and try figure out which one is the patient this time...... Was also STOKED to get my FAVORITE nurses on that unit taking care of me......even more STOKED that this time they put me on a Morphine PCA (patient controlled analgesia) which meant if I was having pain I didnt need to call for pain meds I just had to push my own button....I pushed it as little as possible thinking that would speed up my discharge.
Met my new Cardiologist the next morning...right after my Onco came in and told me he didn't see anything out of the ordinary cardiac wise and left me confused and walks Cardio guy, who once he realized I was a PICU nurse cut through all the bullshit facade and told me straight up what was going on.
He believes that my pericardium was initially damaged from the chemotherapy.....there is still some question as to a ECHO that was done that may/may not have shown and effusion starting a few months back, that was reported to me as being "normal".
He went on to say he believed the radiation further damaged the percardium, exacerbating the conditions till we get to where we are.
His way of "breaking it down" to describe it was to say "its like going to the beach in jeans, getting all sandy and wet , then walking a distance like that.......the rubbing that makes your skin raw..... that's what the sac around my heard was looking like, add to that the internal burns in my lungs and its the perfect recipe for the new found hell I am living "
So plan was.....monitor......start new meds...... monitor....get off IV pain meds and get pain controlled by oral meds.....and GET THE FUCK OUTTA THAT PLACE~!!!!
Thought I would be going home fast....but then along comes "Mister Nasty Rash" to screw up all of my plans.
(here comes some of that graphic reality kiddos)

Day 1 .....see those little bubbles under the clear tape that is over my port.....NOT supposed to be there....Woulda checked it off to allergy to the tapes, but then there are those little "bubbles" popping up just to the left side in the pic....where there is not tape.....hmmmmmmmm

Day 2 the rash starts looking more like a burn WTF??? (mom and dad WTF means What The Fuck)

Folks are talking shingles.....NOPE
Reaction because of radiation burns....NOPE (wrong side dipshit)
Allergy to tapes/adhesives from the cardiac leads......Hmmmmm good idea, but how come only happened on my right side and not at all the lead placement sites....
Finally decision.....check it off on Patricks Freak Factor Box....just another one of those "unexplained Patrick things".......Luckily at this point there does not look like there will be any permanent scarring.
OH and for you "close lookers" *ie: nurses.....NO I do not shave that pattern into my beard it is spots in my beard where the hair stopped growing about 6  months before my diagnosis.....another "unexplained Patrick phenomenon"

So got discharged to home Monday the 27th of August...lucky to have Alan at my side and stay with me for the 2 days after discharge. 
My hear HURTS ALL THE TIME....get's worse when I lay flat or try to lay on my left side (of course the side I love to sleep on)....been plenty of sleepless nights....physical pain and mental "pains"....was the shits trying to take a deep breathe and bending over - standing up too quick put me right in to a vagal response and sends everything spinnning.......
Been TIRED AS SHIT.....just plain worn out and always feel like I am trying to catch my breathe.....
Thought for sure this would all was my follow up with the cardiologist
and without being a "drama king" one of the worst days of my life.....
He feels the damage is very significant and "life threatening".......I am now on major physical limitations ...the way he put it "walking in deep sand is TOO MUCH EXERTION for me right now"

Everyone keeps asking the same first would think it would be "how are you dealing with it all"......but instead it is "how long do they think\ it will last"......"is it permanent"......unfortunetly  like everything else the past 8 months....there is no way to tell what is permanent or what will pass.....I am stuck in this HELL having to take it one day at a time.......
NONE apply today
Those are the words to describe Patrick today.......exactly what I feared most is now my reality......The fear of being sidelined from doing everything I love.....the having to sit back and watch everyone else enjoy their lives.
I am sorry if you don't understand this , but there is NO enjoyment in MY life without being physically active and doing the things I enjoy.....
There is nothing anyone can say right now to make it better.....this is the way it is right now and there is no promise of it getting better......
The tears flowed heavy today.....The ANGER still coursing through me

I am scheduled to give a speech at the CuresSearch Walk in a couple of weeks.....this is a group that raises money for pediatric cancer research.......I have been deemed an "honorary kid" in this years walk and a "key note speaker" (is that what you call it??)
What the hell am I supposed to say ?????? I was working on a "I been on both sides of this cancer thing....blah blah blah" and today all I can think is
Probably not the speech they are looking for.....luckily I have nothing but time on my hands now to sit around like a old man .....that should hopefully give me some insight into things, get a better handle on time passes I will find the strength to pick myself up and move on
I owe it to my Nathan, my Alyssa, my Dusty ,my Tuan, my Carolyn, my Dre, my Kelly.....the "my list just goes on and on"........I owe it to all of these kids to keep fighting......or do I owe it to myself to remember the lesson some of they taught me about dying with dignity....
There is no letting anyone else down if you die....thats other folks selfish bullshit that they need to deal with on there own....we are all dying...some faster than others......I WILL NOT be one of those folks that leaves this world all sickly, weak, unable to do for myself.....I DO NOT AND WILL NOT  be remembered that way !!!!
Do I still have fight left in me....YES I there still a lot more I want to do and see in this life....yes there is.....what I wouldnt give right now to experience a true first kiss just one more time......

I continually say I am speaking for myself here and not on behalf of any other folks facing cancer.....for each of us the journey is similar but very very different
What I would like you to remember is that for ALL cancer patients once the chemotherapy is pau, once the radiation is pau.......everything is NOT rainbows and unicorns...there is a potential life long effects of all of it.....damage to other organs, the risk of developing cancers secondary to the treatments given, even when told "in remisission " there are still those every few month check ups, blood draws, fear of what's waiting around the corner next.
I deluded myself in the beginning of all of this when I talked about this all being a hell I was opening the door too and would have to walk the hall to make it to the "light at the end"
Reality for me just doesnt work that way......everytime I think I get to a point where it can stop and "take a breather" a trap door opens and I am sucked into some new living hell I never imagined possible.....I CAN NOT BE THE ONLY ONE 

I wish I had more "uplifting" stuff to blog about.......I apologize for letting you all down....I will shift my focus in the coming days to the amazing benfit/fundraiser.....the generosity from family/friends and strangers......that at least for now gives me the
breathing space of  knowing I am not at risk at this moment of losing my home
Thank you to all of you that donated for a  Patrick>Bob Tee
The first shipment went out last week , I hope you are all enjoying them and know how much I appreciated your generosity and how far the donation for one tee shirt goes in helping get through the financial nightmare of all of this


Thank you for this Christy..... I will LOVE YOU FOREVER AND A DAY!!