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

This blog entry was meant to be about good things.....love , 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, dissapointments....my "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 movie....it 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 

This>>>

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 agitated......in 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 pass.....today 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 question....you 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.......

STRONG.....BRAVE......WARRIOR........

NONE apply today

SCARED.....QUITTER....WAVING THE WHITE FLAG......READY TO GIVE UP

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 ANGRY.......ANGRY AT ALL OF THIS.....I FUCKING HATE THIS.....I HAVE TRIED TO FOLLOW ALL THE RULES......DO WHAT EVERYONE ASKS OF ME.....AND IN THE END I FEEL LIKE AN ABUSED KID......EACH TIME I FIND THE COURAGE/ENERGY/WILL TO GET BACK UP .......I AM SMACKED RIGHT BACK DOWN AGAIN.

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

CANCER FUCKING SUCKS......LIFE WITH CANCER FUCKING SUCKS.....AND AT THE END OF DAY ALL OF US WITH CANCER ARE JUST PLAIN FUCKED.....

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 things.....as 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 DO....is 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 is....it 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

LOTS OF LOVE PEACE AND ALOHA TO YOU ALL

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