"Chemo Round #2".....



Chemo Round #2 Monday Feb 27,2012

Had my second round of Chemo this past Monday......Was a loooong 9 hour day. Par for the course, when we arrived there was a bunch of "stuff" that should have been done ahead of time that had to be done prior to chemo infusion......lil'things like checking my counts.......seeing the doctor....blah blah blah.....So actual infusion started about 2 hours late......no worries/no stress.....par for the course....!

Of course as luck would have it the "financial patient liaison" showed just prior to start of chemo infusion....this got my b/p upwards of 160's/110's.........grrrrr arrrrgggg......long story short my new and improved Medquest Application will be filed tomorrow and in something like 30-45 days??? I'll know if I am approved for March....be easy to say "of course I'll be covered now".....But we saw where that got us in February......

Icing on the "medquest cake" is I am scheduled for a CT tomorrow afternoon because of a constant headache and some dizzy spells I been having since last Friday.....small kine concerns about blocked vasculature (troubles with blood flow to and from the brain).....Radiology Department just called to verify appt.....asked what insurance I had and when told them it was still pending they informed me I would need to pay $1200.00 up front tomorrow before they would do me and then they would bill me the rest.....HA HA HA HA HA HA!!! .....funny right?!?!? I explained the situation with Medquest to them as well as why CT necessary ASAP......they called Doctor who's assistant called to inform me my Onco is currently on a plane and unavailable.....trying to get the covering MD to approve the "emergent" nature of the CT......waiting on call back now......

I THOUGHT I WAS SUPPOSED TO NOT BE STRESSING......??????

Seriously done fighting with these folks, "if can can, if no can no can".......I am over it. Everyone so quick to hop on the "things happen for a reason" when they have nothing else to go on...so lets just say the CT will happen when it does for a reason......all in agreement.....AYE!!!

So let's get back to "chemo Monday".......finally got the infusions up and going ....was given a bunch of pre meds.......these are things like tylenol, benadryl, steroids....meant to "ward off" of lessen degree of possible reaction to the Chemo......3 of the chemos run on the pump....funny thing is because (although losing plenty weight) I am still too "muscular for my port.......so if flexing, using my right arm for things ....pressures go up on the pump and it will stop infusing...this means gotta wait for the nurse to come re-set the pump......after scoldings I got while inpatient and reset my pump no way I am going do it in clinic!!!!! So I have gotten pretty good at hearing the first alarm and "assuming the position".........

Yup.....right hand on top of the head.....running joke is I am going have someone knit me a skull cap with a glove sewn into it that I can wear during chemo infusions!!!!  And YES I see it again too, this is like 3 rd pic where you really notice the 2 different colors of my eyes....its always been there sutler.....had to be pretty close looking into my eyes to notice (so obviously there have only been a few to witness - ha ha ha ha)......not sure what its all about......me morphing into my "Supah P" powers?????? I decided if I do get superhero powers out of all of this I WANT THE ABILITY TO STAY UNDERWATER WITH OUT HAVING TO BREATH.......was going to say I wanted gills but I always think of Kevin Costner in Waterworld walking around with the big vagina's on the side of his neck.....NO THANK YOU!!!

How's my "kool-aid chemo".......pretty much comes out the same color...just a little more diluted...don't worry I haven't taken a pic of the (yet)....ha ha ha ha!!

So Chemo all in.....no fuss no muss...was a long day, glad to have Kawika at my side all day to keep me company, and my visits from Malia ....especially when she dropped off a huge batch of homemade chicken soup......

Ono-liscious....broke da mouth soup!!!


Was the perfect post-chemo meal....and actually just finished a batch for lunch...its a chilly grey day here in Hakipu'u.....
Okie back to the chemo story...

So.....Chemo pau....first thing I noticed different this time than round #1 was the nausea hitting during the infusions....no biggie popped a phenergan and was all G......at end of it all just before headed out the door I hit the bathroom, knowing I had been socking the fluids all day and we had a bit of a drive home......on way out of br I stop to "check my bad ass bald self" in the mirror ......and notice a rash spreading out across top of my chest.......DAMN IT!!!!

Back in the stall (spot they put you in is like a horse stall..."CMH nurses think the alley" with thinner walls)  had to re-access my port and give a big fat dose of steroids.....rash gone in 15  minutes.....out the door as soon as de-accessed......time to get home !!!!

Stop on the way to pick up medication....waiting on scripts and next phase of "chemo side effects" hit.....that nasty all telling "gurgle down there"....crisis averted.....remembered the "every fart a potential game of Russian roulette" I learned round #1.....squeezed real tight and made it home...without incidence......

With round #1 I made it at least 24 hours before side effects kicking in.....and actually felt "good" first few days......Round #2 the not so lucky......

First to hit was the nasal congestion, runny nose, sneezing......lots and lots of sneezing......I missed reading about this "common side effect" of the Cytoxan when doing my chemo learning..... the constant sneezing while your about 10 PSI away from a major shart.....not the best situation one finds themselves in......

Nausea came back but I "caught it"with another phenergan then bumped right up to Zofran.....

Had the full on chills and flushing ...thank you Rituxan

And the the pooping started....no need go into details on that....it started and I thought it would never end......any Nurse knows you are quickly approaching rock bottom when you are layering your own bed with chucks and saying a prayer to St. Deficatious that no "accidents" happen while you sleep.

Slept came...thanks to the Valium ;)  got a whole 5 hours heavy sleep.......woke thinking I would be feeling better ...just like round one....but NOOOOOOO ....gotta go and switch things up...keep me guessing......bam hit the ground running....well hit the porcelain got running...now not sure to sit or bend over it first......whats going to hit first.........thought about just laying in the tub and letting it all take over........ponied up.......barfed, wiped mouth, brushed teeth........had a nice long "big boy" sit down........nuff said....time to get on with the day..........

Look in the mirror and looks like I been out in the sun......FLUSHED.....worried I had a fever.....SCORE....afebrile.......little more research....flushing is secondary to all the steroids I had taken the day before..........uh oh....overdue for my big daily dose of steroids......these I take for days 2-5 after chemo..... The steroid Predinsone has a crazy way of making you feel restless  and a false feeling of "well being"......I refuse to talk about the potential acne and moon face (it is NOT going to happen to me)........so for a few hours after taking I get the feeling that can only be compared to Bill Baxter turning into the Hulk....tons of nervous energy, can not focus, eating anything not locked down......15 activities at once......1500 thoughts racing through my head at once........

Believe me that is the LAST time I wait to take the dose in the afternoon......no matter how nauseous in morning gotta get some food in and get those pills down!!!!!

I have allotted 2 hours a day of "work" meaning 2 hours of phone calls/filling out papers/ faxing etc etc.....figure what better time to be "Hulking".......one of these days I will actually hold myself to the 2 hour limit....

I was impressed to get follow up call from my Chemo nurse to see how I had been doing....and felt better when she reassured me that everything I was "experiencing" was kinda to be expected.....just gotta stay strong and push through.....she was great at giving me little pointers and offering some care/support.

Actually had a good night sleep last night...only up once.....a record for the past month....was nice and chilly in Hakipu'u ....good sleeping weather....and now it's gotta be Enya playing all night to "pacify" me.......

Got up this morning......dressed, pills in, dark gray COLD!! But I promised myself (and actually had to sign a contract at chemo clinic) that I would walk at least 15 minutes everyday.... out the door......sitting down to get my VIBRAM FIVE FINGERS (product placement) on they do great protecting my feet from cuts crossing the water and walking the beach, while I still get sensation of being barefoot..........As I am sliding in my left foot my entire foot locks in pain, felt like some one shoved a pipe up the bottom of my foot......pain to wiggle my toes........." NOOOOOOO I thought I would go a few rounds if not my whole course without meeting up with the dreaded Vincristine side effects" ........"and what the hell happened to the early warning signs of numbness/tingling of fingers/toes before the full on cramping pains..........

Decided the "side effects" weren't getting the best of me today, too grey and chilly to not get out for at least a bit......so kinda half dragging my "stumpy foot" on my walk I went....crossing the water and the mud was a challenge......but slow going and realizing I had my new iPhone in my jacket prevented me from falling in.....on the beach and off I went......felt good to be out and gave me a great chance to decompress and rid my body of some of the excess salt water that its been holding onto........got to love those peri-orbital outflow valves yea?!?

Happily as day had gone on and I have kept myself moving.......the pain has lessened to more like a pins/needles - falling asleep feeling walking much easier.........not ready for the whole cane thang"....

So its just cruise time, sofa surfing, napping, day.........sorry not so full of quick whit/ humor ....yah get what I got to give ya!!! ha ha !!

Follow up phone call.....I need to go in to meet with the hospital financial services tomorrow BEFORE  we can progress with CT's and treatments..........I wonder if I should bring them a rock they can teach me to squeeze water from........upswing to that is they share office space with the folks who dropped the ball and got me declined benefits for February.......good times.....

Lots of Love and Aloha to you All

P





http://www.huffingtonpost.com/suleika-jaouad/cancer-advice_b_1290008.html?ref=impact&ir=Impact&fb_source=message

"My Lungs And Body May Need Air...But My Soul Breathes Better In The Ocean" -James Flynn

Day before Chemo Round #2.............

YUP YUP....feeling strong physically, mentally and spiritually......have so many folks to thank for helping me get to this point......I AM READY TO BATTLE!!

I have found a "common ground" with my Chemo and we are going to unite tomorrow as I give it permission to enter my body and together we will work to destroy and rid my body of the cancers that have taken root.

Bags are packed, special blankie and pillow ready to go.... "SUPAH P" shirt ready....comfy clothes....iPod loaded.....snacks packed (Lunch being delivered - Mahalo Shawna!!! woot woot!!)....blogging early so can relax this evening and get a good nite sleep  (ha ha ya rite like I going really sleep tonight!!)

They tell me infusion of all premeds and the 4 chemotheraputic agents will take approx 6 hours total to infuse......

I mean no offense to anyone who has been in the spot that I find myself in....I need to be honest about thoughts and feelings.......these are MY thoughts and feelings ......and this is MY experience....

I AM SCARED SHITLESS.......

For those not familiar with chemotherapy here are the Top Side Effects From Lymphoma Treatment

1.Chemotherapy Induced Nausea and Vomiting

2.Difficulty Swallowing During Radiation Therapy

(I already got some problems in that area, good thing my radiation isnt for months huh)

3. Hair Loss During Chemotherapy

(PAU)

4. Mouth Sores (Mucositis)

5. "Chemobrain"

6. Loss of Appetite

7. Bowel Troubles

8. Effects of Treatment on Your Skin

9. Effects on Your Sex Life

(My WHAT??? at least theres one thing I wont feel missing!!)

10. Potential development of neuromuscular side effects and possiblility of loss of deep–tendon reflexes, foot drop, ataxia, and paralysis all thanks to my new buddy Vincristine.

How many of these will I check off before my treatment is done...no one knows......is it "bad juju" to be focused on this now??? NO IT IS NOT...these are a reality....these are MY new reality.....some of these are already checked off on my list.....and for me you can add the whole "irritated diaphram after chemo administration that leads to hours of unrelenting hiccups........

Again....am I "focusing too much on the negatives"????? NO!!! I have seen all of these first hand, I have seen children battle against all of this.....fight all of this....sometimes win/sometimes lose....does that fuel me to fight hard...YES....can I fight harder than the "losers" ....THERE IS NO SUCH THING AS FIGHTING HARDER WHEN IT COMES TO CANCER......YOU EITHER FIGHT HARD OR DONT FIGHT AT ALL......if the cancer "won" it had nothing to do with the strength or the fight of the person it "beat".

I know many of you are thinking "Is it healthy for him to be focused on so much negatives right now????" YES....for ME it is.... I need to face all of this head on , deal with it, squash what I can, learn to live with what I can not squash.........If that makes YOU uncomfortable...that is on YOU!

So many questions going through my head and not wanting to let my "weaknesses" show.....gotta be tough superhero me right?????    Sorry folks  even a "superhero" needs a good cry........its easy to go on and on about being positive and saying all the things folks want to hear and want to believe......and YES YES YES I do BELIEVE that positive thoughts can help with successful outcomes........but I need to get out there the other thoughts that are going through my head right now....BUCKLE UP THIS IS GOING BE A BUMPY RIDE.......anyone who cares sit this one out ...I completely understand......my filters are gone....I will not hold back in fear of making someone else uncomfortable.....

THE THOUGHTS THAT ARE RAGING THROUGH MY HEAD AT THIS MOMENT

"What if none of this works"........"what did I ever do to deserve this"...... "will I ever get to set up another chrismas tree"......"how did I end up being single at 43?"........"what am I going to do if the Puke Monster shows up in the middle of the nite"......."when will I transform from being new handsome bald me to gray sickly skeletor me"........"will I ever know the feeling of another first kiss"...."will I lose my eyebrows"......"what did I do to deserve this"...... "it is so dark the place I am walking into, when I get half way will I see a light at the other end"..........."why can't anyone give me a goddam crystal ball so I can know just how bad, bad is going to be for me"......."eat everything in the house TONIGHT"....... "why can't I stop crying"........."what if I just said NO to treatment....could I stay the way I am right now for a while longer, would that be better than the me I am going to become with each round of chemo"......."some say I may lose my mojo....how many times is too many when it comes to taking care of business on my own"......" in another 2 weeks I'll be a size 32 waist again - WOOT WOOT"......."in another 4 weeks I'll be a size 30 waist...thats nastie"......"can you hire hookers for cancer patients"........"when I come back I want gills god damn it"......."if one more person tells me this is their gods way of testing me or quote some shit like that which does not kill you only makes you stronger - I will probably pull pages from that book you are trying to bash over my head and hand feed you pages of it till you stop talking"........"I DO NOT BELIEVE IN A GOD THAT GIVES GOOD PEOPLE AND INNOCENT CHILDREN INCURABLE DISEASES AS A MEANS OF TESTING THEIR STRENGTH AND FAITH!!!!!!"........"besides since I am a big HOMO your god doesn't care about me anyway, isnt that what they teach in your church?"......."I am not sure what will be more fun, playing the cancer card or playing the chemo-brain card"......."there is so much I need to say to YOU, and YOU, and YOU and YOU and YOU"........"I need to apologize to YOU and YOU and YOU"........"good thing I didn't start drinking wine before started this blog"......"because I dont have medical coverage is it really effecting my therapies"......."how did I get so lucky to be so loved"....."what did I ever do to deserve this"........"pity the poor mental health therapist they pair my ass with"......"money. bills.money.bills.money.bills"........"thankfully I do not have kids"........"will I never know the joy of being a father"........"what if none of this works"........"what is it that makes the sky blue and the grass green"......"I need to find someone to teach my properly to play my ukulele"....."I wish we went to karaoke more often"....."there are so many great people I have come across in my life.....how do I make sure each one knows it"......."I don't want mouth sores"........"I want fresh fruit"......."am I strong enough to truly handle this......or am I weak and just putting on a show to make everyone else more comfortable".........."would death really be that bad"........

EXHAUSTING ISNT IT????? TRY BEING ME!!!!!!

So, there is some insight into what is happening in the mind of one person learning to deal with his cancer as he prepares to move forward with his next chemo treatment.....chemo treatment #1 was honestly done while pretty high on pain meds.....and avoiding dealing with reality......

This is MY REALITY .......

I am NOT looking for sympathy, pity or anything like that......it is just important for me that as I go through this process I do it honestly and openly......and YES those that didnt approve that did mean divulging my present financial standing.......THIS IS MY REALITY

WHAT AM I???

I am ANGRY

I am SCARED

I feel ALONE

I am STRONG

I am NOT ALONE

I am ABLE TO BEAT THIS

I AM SCARED........

WHOA  big sigh of relief ....getting all that off my chest/out of my head......there I said what I wanted to say......it is MY BLOG  after all.....if anyone was made uncomfortable....I DO NOT APOLOGIZE....this is MY REALITY.......these are MY thoughts......I appreciate you staying by my side as alot of my strength these days comes from those around me.......NEVER will we ALL see "eye to eye" on some issues, but that is what makes each of us individual, special and our differences can be what unite us......

AGAIN, I do not want to give the impression that I am going into chemo tomorrow feeling negaitve and like "giving up"......I truly am feeling STRONG, POWERFUL, BACKED UP, READY TO FIGHT...... what this blog was about was for me to exorcise some demons that I have been carrying around and have found difficult to talk about/vocalize because of others discomfort ...........I have not given up, I am ready to fight, I know I WILL BEAT THIS, I have not come this far scrapping my way through life to finally be living the life I deserve to have....just to have it all taken away from me.....I WILL NOT GIVE CANCER THE STRENGTH OR POWER TO DO THAT TO ME!!!

I HAVE SO MUCH LOVE AND ALOHA FOR ALL OF YOU......

P

MAHALO to ma braddah James Flynn for the quote to this blog entry.....one day soon you an me going do that SUP run around Mokoli'i ....I am thinking a full moon run way to go!!!!!



"Because of all of you........"

Mahalo to Terry for giving you all an idea of how I start my days...

So.....let's get right to one of the most frequently asked questions I have gotten since this all started....

"WHAT????? How the hell do you NOT have health insurance?!?!?!?!"

Let's go back to last year, I stopped doing home care for Kamakana, was picking up more hours as a per diem nurse in the PICU.....and made the decision not to take a benefited position because as per diem I was freed up to start doing more of some the other things in life in wanted to be doing. Getting more involved in my photography, trying get that business up and running, doing stuff for Ocean Paddler TV, crewing more on the sailing canoe, summer sailing canoe races......my "plate was full" and I was having the time of my life!!!

There had been plenty discussions (lectures) about my not having health insurance. I had actually looked into purchasing my own, started the application process a few times...blah blah blah.....again had too much going on to pay a lot of attention to that.....besides I was "strong like bull"!!!! I could handle a half year or whatever with no health insurance....."what's the worse that could happen"........famous last words huh?!?!?!

With the amount of hours I had been putting in at the hospital, helping out while so much staff was out on maternity leaves and family leave.....I truly thought that once I went over the number of hours needed to qualify for benefits, certainly I would get some coverage.......long story short ....NOPE.....SHUT DOWN......actually in December as I approached the required number of hours needed for benefits, I was informed by the "powers that be" I would need  to stop working for  the last2 (+) weeks of the financial quarter, because they would not be giving me any benefits.......No need get all worked up - yah I know suckage....but the reality is that I knew as a per diem they were very not likely to give me benefits.........no need go on about what could have, should have, would have.......

I TOOK THE RISK

when I made the decision to take on non-benefited positions to "free myself up" and then never got my own insurance......Ultimately at this point it is neither here nor there.....what insurance I would have had would be almost tapped out at this point and I'd be right in this boat I find myself in with the State of Hawai'i Healthcare System.......

Honestly dealing with all of this has brought more stress down on me that the cancer....I have promised not to get myself worked up about financial stuff, bills, etc etc etc.......was even a threat by some to put a lock on my mailbox to prevent me from witnessing the daily onslaught of hospital bills.........so I will do my best to not get too "worked up" as I try relay the SHIT we have gone through to get me to where I am today......

Here in Hawai'i the larger hospitals have outsourced to a private company to provide "patient liaisons" to help folks navigate the health insurance, financial world.....basically their job is to make sure folks are covered and the hospital is going to get paid........ they at this point have proven, in my case, to be glorified paper pushers that have no idea how the system really works.....but since it is IMPOSSIBLE to actually get to speak to a human being at Medquest (Hawai'i State medical coverage)..........

When I showed up at Castle Hospital on January 25......at the same time I was being told I had cancer , I was being handed a 18 page application for Medquest coverage, I filled it out, informed the "patient liaison" that I was at that very moment out of work and would have no sick/vacation time, no more income and no assets.....except for the cash in my checking account.

NOW THIS STORY WOULD BE ALL TIED UP IN A LITTLE RED BOW IF AT ANY POINT SOMEONE TOLD ME I NEED TO START "WORKING THE SYSTEM" AND EMPTY MY CHECKING ACCOUNTS PRONTO!!!!!

Instead, in between cancer diagnosis, surgeries, wondering, laying in hospital drugged up on pain meds etc etc etc with NO help from patient liaison's, social workers or discharge planners,,,,oh they were all called and showed up at my bedside basically to tell me there was nothing really they could do, but here were numbers I could call for stuff, and what paperwork they did need I would have to figure out how to get it all while being stuck in the hospital......what they asked for they got, and along with this and my application numerous times they were given from my attending docs the forms required to make mine and "Emergency Application"

Before leaving the hospital I was told (no I can not recall by who) that "I WAS COVERED FOR JANUARY, AND FEBRUARY SHOULD BE NO PROBLEM"........PHEW load off huh?!?!

Fast forward to day of discharge when I am informed that actually I had been denied all coverage for the month of January ....seems the maximum benefits one can have is $2,000.00 and I had exactly $2787.23 in assets ....and would be responsible for paying the bills......oh and they were "gonna need cash for pharmacy to release my discharge meds to me"............so I was all "WHATEVAHS.....tell me where to sign at the X , so that I can go home!!!!"

Nothing I could do about it, and needed to focus more on me NOT bills......

"for sure February would be covered no doubt"

Hell, with my income ceasing as of January 25, and having racking up over $80,000.00 in the 10 days I was in hospital for sure I would qualify for some assistance right?!?!?!

All the while thinking these "patient liaisons" were handling and doing their job...no brainer just tell me when I am covered......I was starting to get more stressed as their was talk of holding my chemo or my having to pay for it upfront ($13,000.00 just for chemo itself - EACH ROUND)

Move to February 14.....the day of "my financial melt down" .........folks dream of  romantic love making on Valentines Day......this year I got FUCKED.....no warning, no dinner, no drinks just a big BAM......when I realized these "patient liaison" douches hadn't been doing their jobs and the necessary paper works hadn't all been collected, and what I was supplying to the one worker who I thought was in charge of my case , was basically faxing my faxes to another dude in anther office and he was the one who ultimately was "in charge of my case".....a NIGHTMARE.....I was coming more and more unglued....it was the same day I opened this piece of mail:

This is when things truly just became laughable.....and far too much for me to handle....luckily my amazing friends Keahau(1) and Kawika were at my side to "pick up the pieces" as I crumbled......

It is not the bills that stress me out....at this point they mean nothing...."You can not get water from stone"......just put em in the folder with the rest of them........someday they all go to the bankruptcy attorney.........what stresses me out is folks not doing the jobs they are hired to do and not being held responsible when they in fact DO NOT DO THEIR JOB.......(and don't get me started on the folks that have milked the system for years)

So at this point I very gladly handed over the  "reigns" and agreed not to speak to these folks as every conversation left me grabbing for more pain meds or a big dose of valium, I also agreed to stop looking at the hospital bills when they come in (truth be told I still peek at them before they go in the "file"...its funny like reading the daily comics back small kid days)

It was time to "relax"......."let it all go"......"focus on what's important"......after all benefits were a "sure thing for February".......cut to  Friday February 17 when word came through....." benefits for February have been ....(wait for it)....(feel it)....(you know whats coming).............

D-E-N-I-E-D

Yup you read that right.....seems the way our public healthcare system works is....Like I said I would need less than $2000.00 in assets.....what I was NEVER TOLD  was they only look at the bank statement on the 1st of the month.....and unfortunately for my ass, I was down to the wire sending in the rent check for February.....remember I was still in the hospital arranging check book deliveries, envelope/stamp deliveries....mail pick up from my hospital bed......MY rent WAS paid on time...but the check did not clear the account until Feb 3.......I was just a few dollars over the $2,000.00 minimum on Feb 1st.......and the reviewers do not take that into consideration, its what was there on the 1st, that's the rules, that's the way it goes, nothing you can do......bullshit.....bullshit....bullshit.....

What really chaps my ass is that SERIOUSLY....NONE OF THESE "LIASONS" COULD HAVE INFORMED ME TO MAKE SURE MY CHECKING ACCOUNT WAS TAPPED OUT BY THE 1ST??????

FUCKING FUCKIDY FUCK FUCK FUCK FUCERS FUCKIDY FUCK FUCK FUCK~~~~~whew feels good to get that out!!!!!

So that is where things stand at this point.....can't imagine being denied for March....but hell the way things have gone so far...........

This leads me to an OVERDUE ACKNOWLEDGEMENT and HUGE MAHALO -THANK YOU to every one that has stepped up to "chip in" ......I am truly blown away and humbled.....my whole life I have taken care of myself (sometimes better than others) so to be at a point to find myself relying on the charity of others is a very different and difficult position for me to be put it......

The words "thank you" are not enough........I have yet to find the right words.....to describe the how blessed I feel to be surrounded and supported by so much amazing family and friends......the financial assistance, the cooked meals, the rides here and there, the conversations, care packages, emails/cards/notes of love and support.......the kind beautiful words........

How can I ever repay you all??????

Actually I CAN ANSWER THAT.......

I am going to beat this cancer(s) and beat da fakkahs fast, beat da fakkahs hard!!!!

NONE  of this will happen in vain, there will be more goodness to come out of this, I have many times found myself fighting the system/bending rules for my patients....time to start doing it for myself and letting others in on it as I go.......when this is over I WILL  be the voice for others who come behind me and find themselves in the same perdiciment I have found myself if.

Again I take FULL RESPONSIBILITY for neglecting getting private health coverage......but we are past that at this point and at the point where......

The system I have worked and paid into since I was 16 years old, the system that we are told "will be there for us in time of need" the system of bullshit US healthcare that we are being force fed by both political parties.....this "SYSTEM"  my fiends is FLAWED MAJORLY and something need to change!!!

I have to battle NEIL AND BOB at this point, getting down off this political/social soapbox......but just to sit on it and take a rest for a while.....once Neil and Bob are sent back through the portal of hell they crawled from I will be back up on this soap box.....there needs to be a voice for the folks who dont have the backing like I do, the folks that lose everything, have no guidance, know nothing but hopelessness.

Without all of you ......my friends and family.....that is where I would be right now HOPELESS......sick....stressed...broke....preoccupied with living expenses....preoccupied with living vs dying.........

BECAUSE OF ALL OF YOU .....I know I can stay in my home while on treatment, I know if something happens that I must move, there WILL ALWAYS BE A ROOF OVER MY HEAD.

BECAUSE OF ALL OF YOU......I don't worry where my next meal will come from.....if I run out of $$$....THERE WILL ALWAYS BE FOOD IN MY ICE BOX....ALL OF IT MADE WITH LOVE.

BECAUSE OF ALL OF YOU ....I don't worry what will happen if I get too weak/sick to do my basic daily stuffs......THERE WILL ALWAYS BE SOMEONE HERE AT MY SIDE TO LEND A HAND.

BECAUSE OF ALL OF YOU......I know that during the dark, scary, painful, lonely times that lie ahead......THERE WILL ALWAYS BE SOMEONE I CAN CALL ON TO LEND AND EAR, A SHOULDER, A PLACE TO LAY MY HEAD, A HAND TO WIPE MY TEARS.

BECAUSE OF ALL OF YOU I FEEL LIKE THE LUCKIEST MAN ON THE PLANET.......I NEVER IN MY LIFETIME THOUGHT I COULD TRULY KNOW SO MUCH LOVE, SO MUCH SUPPORT, SO PALPABLE.....NO MATTER HOW FAR AWAY WE MIGHT BE.

BECAUSE OF ALL OF YOU......I WILL SURVIVE THIS AND THE WORLD WILL REMAIN A BETTER PLACE BECAUSE I AM IN IT........

IT IS BECAUSE OF YOU ALL THAT I WILL GO INTO ROUND 2 OF CHEMO ON MONDAY MORNING FEELING LIKE "SUPAH P"!!!

Strong, loved, supported.....ready to fight.......

Please if you take nothing else from my story take this........Live every day to the fullest, be kind with your words, try to avoid getting caught up in the negative bullshit smak talk and gossip........most of all  BE A GOOD PERSON, BE GOOD TO OTHERS........LET ME BE AN EXAMPLE ......YOU NEVER KNOW WHEN YOU CHIPS WILL BE DOWN AND THE WAY YOU LIVE YOUR LIFE TODAY WILL COME BACK AROUND AT SOME POINT.

PLEASE....DON'T GET ME WRONG!!! I do not mean to be all "preachy" I am NO ANGEL, I have done my fair share of "not nice things" luckily nothing too bad and luckily the way I have chosen to live my life has come back around to me to let me know GOOD GUYS DO NOT FINISH LAST!!!!!

Lots of Love and Aloha to you all....early to bed tonight.....I have the feeling going need a good dose of "water/ sailing canoe time" tomorrow........NO MORE FINANCIAL SPEAK!!!

a chance at just being ME!

WOW........where do I start...how to put deep feelings and emotions into words???? Going give it a try....

Was going to go on and on in today's blog about the lack of health coverage mess I landed in and what a crock of crap our state and federal programs are.......BUT today was too much of a blessing and gift to disrespect it by ending it writing about that crap....instead let's just talk about today....

The tears have been flowing strong....GOOD KINE TEARS!!! Completely overwhelmed with happiness today......started out like every other beautiful morning in Hakipu'u ......

this is the spot across the water from our property where I like to sit and do my visualization exercises....this is the image that will be in my head when the chemo starts flowing on Monday.....THANK YOU Krista for the tools you provided me with!!


Truths be told, I was up around 5 am first thought on my mind...."going on the sailing canoe today...haven't been out on the water in 32 days" was like a kid on Xmas morning.....Up and ready to go.

Little history here....I was introduced to the sailing canoe and the sailing canoe community when I became friends with Terry and Nakoa......both have been very involved for a long time in all aspects of sailing canoe, from building, teaching, racing, perpetuating the culture.

I will never forget the first day I met Pomaika'i O Kapaekukui (PK)...hard to describe what passed between us but I was drawn to her mana and for sure she sat proud posing for my camera.

PK was built by Nakoa. First time I was on the water with her I was completly HOOKED!!! Felt like I was home....decided every chance I was going to get to be around the wa'a I was going to take it......so much to learn....so much life to live.....felt like HOME.....

Terry, Nakoa and I became fast friends after our first meeting and shortly after became 'ohana. So much of the blessings in my life came with them and unreal the amount of good times and memories we all share.......life full on fell into place.......eventually leading to Hakipu'u opening up to me and welcoming me in......a blessing I acknowledge every day!!!

So I began spending more and more time around the sailing canoes, did my best to Nānā ka maka; hoʻolohe ka pepeiao; paʻa ka waha.(Observe with the eyes; listen with the ears; shut the mouth.)

Last summer I had the opportunity to be a part of the Hawaiian Sailing Canoe Association race series. That is a series of races that are done from island to island from about April to August. Hawai'i (Big Island) to Maui to Moloka'i to O'ahu to Kaua'i.... race to one island, leave the sailing canoes.....head back to "life" return in a few weeks rig back up and race off to next island. My first chanel crossings in canoe....there really are no words to describe the experiences.

One great part of this is on each island we do community service, give back days offering rides on the sailing canoes to anyone interested.

The mission of the HSCA is "to learn, revive, educate and practice those ancient Hawaiian skills and values as they relate to sailing canoes and the Hawaiian culture".

Got to take Moki, one of my all time favorite patients and one of the strongest most courageous person I have ever met, out on the sailing canoe with his 'ohana while we were on Maui

Moloka'i to Kualoa...nothing beats finish line right in your own back yard!

In one race season surrounded by so many amazing folks I have been blessed with  friendships that will last a lifetime.....here's to hoping someones got the nutz to let the "cancer dude" on their wa'a for a few channel crossings this season.

First "Pickle" on the all wahine crew

'ohana HSCA

'Ohana HSCA

So following one of the most amazing summers of my life time......I was full on addicted to everything sailing caone!!

I began helping Nakoa with Hawaiian Ocean Adventures, crewing a few tours here and there that we would run from Kualoa. Then he got the gig running sailing canoe and SUP's (stand up paddle board) out at the new Disney Aulani Resort Ko Olina. 

Was a huge honor for me when he offered me a job as crew out there.......Unreal...to be learning more and more about sailing canoe from Captains Nakoa and La'a, working with an amazing crew that have also become 'ohana - Koni, Ryanson, Roxayne. Best is to be taking folks out on the sailing canoe for what is for most of them a once in a life time experience. Us having the chance to share the culture, talk story, and hear time and time again that being on the sailing canoe with us was the "best part of our trip to Hawai'i".......talk about being blessed  and what better balance to working in the PICU

So hopefully at this point you can understand my love and appreciation for this "sailing canoe reality" that has become my reality........this cancer shit has sucked the wind outta my sails (pun intended)

I went from being on the sailing canoe 3-4 days a week, working or playing... salt water running through ever part of me....to BAM you got cancer...get in the hospital...doesn't matter what you do or get enjoyment from..."cancer is going to STEAL ALL of it from you".......

After 32 days in "dry dock" I am suprised I didnt just become dust and blow away.......

BUT....after today I am here to tell cancer FUCK OFF......YOU WILL NOT STEAL EVERYTHING AWAY FROM ME.....your an uninvited guest who has taken up residence inside of me ...don't get comfortable because your stay will be short......and every day I have doing what I love in my life is a day I GROW STRONGER  and YOU GROW WEAKER!!!

Amazing thing that really made today a gift is that originally I was scheduled for round 2 of chemo today, had there not been a mix up at the cancer clinic I would never have had today.....Mahalo ke akua!!!

So thankful that my good friend Stephanie was there with her camera so that I can show you what today was for me:

What happened today was a BLESSING.....I actually went for periods of time....some as long as an hour....where I was "ME".....I was Patrick.....enjoying something I love to do.......I was NOT PATRICK WITH CANCER.....my mind/body/spirit were being filled with life.....It is hard to explain the past month...... diagnosed.....surgeries....chemotherapies.....real thoughts of life and death.....happiness.....sadness.....madness....anger....but every step of the way I was reminded constantly that about this cancer shit......today that got turned off,  if even for just a little while.

The exhaustion and nap that was necessary when I got off the water was a SMALL PRICE TO PAY for what I was given today......this made me stronger, recharged my soul and provided me more battle armour for "Round 2 Monday"

I have said it before and will repeat it time and time again until we are at the end of this "ride on the cancer bus".......GOTTA MAKE THE GOOD DAYS GREAT AND THE BAD DAYS SHORT!!!

I am praying that my chemo schedule will be able to be switched to every 3 weeks from every 2 weeks....I can and will take that week of pure hell following my chemo if I know I can have at least one day like today to look forward to  before next round.

Lots of Love and Aloha

P

Make the good days GREAT and the bad days SHORT......

Ya know what happens when you get back to back to back good days???? All of a sudden you realize you are having a GOOD WEEK!!! So far it has been just that! All the trauma of the instant hair loss aside, I am feeling strong, positive and like I am finally obtaining a good balance of Mind/Body/Spirit.

Have gone further and further on my sunrise walks.......so amazing the beauty I see each day, every morning is a different show......

......have I mentioned how blessed I feel to be living where I do...........

So quick update for last few days........ the hair loss came fast....small kine nubbins left on my head right now.....as far as can tell it is not recommended for me to be shaving my head with a razor.....not really sure where my platelet count is........the hair loss is the first time I have noticed myself making "bargains".....kinda went something like this...

"Dear god(dess) of hair follicle, Saint Alopecia....who ever is listening.....You've got the hair off my head, stole the hair off my kinipopo.....PLEASE LET ME HAVE MY EYEBROWS!!!!  I will offer you up the hair on my legs, the hair on my arms, the rest of the hair anywhere PLEASE LEAVE MY EYEBROWS INTACT!!!"

Ohhhhh and while I got your attention WTF is up with the hair up my nose and in my ears?!?!?! Not good enough for you??? Noticed you haven't gone anywhere near those spots!!!!

See I am coming to terms with my bolo head.....still not going out with out a hat on....building a big selection of skull caps.....not taking pics yet.........Hair today gone tomorrow...ha ha ha ....Whatevahs - I'm still friggin salty!!

I did receive an amazing t-shirt in the mail (been receiving all kinds amazing, fun, yummy gifts from post man).....it is my "Chemo infusion" costume....

"SUPAHMAN"....

(now I just need Kamakana's cape and I'm good for go)

Thank you Stacy....LOVE IT!!

Rest of the week I have been feeling stronger and stronger, spending more time meditating, doing visualization exercise and affirmations. Trying to ignore all the state health insurance bullshit....that's mostly cause my "pit bull" is down with the flu and I have vowed to have not conversation with those folks myself........5 minutes with them and I'm grabbing for percocets, valiums and supplemental oxygen.......

Looks like I will be getting some time on the water tomorrow.....for sure exactly what I need to bring things full circle and prep me for Monday....

Been 32 days since I have been out on one of the sailing canoes and every part of me down to the core is screaming for water time.......

Mahalo Nakoa....brother, friend, captain, mentor, teacher.....mahalo for trusting in me!!

Going have to make the most of the good days when they come right!!!!!

OKIE ......I know quit dawdling and lets get this friggin blog caught up to date:

Lets talk MEDICAL:   Last we talked my diagnosis was 6cm mediastinal mass= Hodgkins Lymphoma......little blebs/masses scattered around my chest = Non-Hodkins Lymphoma......

Confusing I know.....so my biopsy was sent off to Stanford for a "second opinion" on the pathology....NOW things get confusing, bear with me.....there is something called a CD15  marker that is a carbohydrate (not a protein) that is widely used for diagnosis of Hodgkin's lymphoma.

For pathologists/health care workers it is ● Membranous, diffuse cytoplasmic or Golgi staining of Reed-Sternberg cells in Hodgkin’s lymphoma; CD15 staining is used to confirm diagnosis, or to differentiate Hodgkin's lymphoma (CD15+) from anaplastic large cell lymphoma (usually CD15 negative)........still with me??

Specimen pathology according to Queens Hospital is CD15 POSITIVE

Specimen pathology according to Stanford is CD15 NEGATIVE

NO SHIT THEY WENT THROW A WRENCH INTO EVERYTHING.....

So after a long talk....it would make more sense that it tested CD15 (-) that means it is all Large Diffuse B-Cell (non-Hodkins Lymphoma) and that I do not have 2 cancers, but we just really don't know. At this point only way to know 100% would be to get a surgical biopsy of "Bob" (mediastinal mass)......but that would be a risky, painful long recovery surgery and at this point the benefits DO NOT out weigh the risks for me.

THIRD OPINION????? YA I went there rite away too.....basically the course of treatment that we agreed to with (CHOP-R) was picked to go after the non-hodgkins lymphoma first as it is the more aggressive of the 2 lymphomas with the hopes of it having some effects on the Hodkins Lymphoma as well.

So, getting another opinion at this point kinda pointless as none of the treatment plan has or will at this point change......I will be going in for CHOP-R Round 2 on Monday.....after that we will get a follow up PETSCAN and that will show us what effect the chemo is having on the cancer(s).....if need decisions (3rd opinions) can happen after we see the results.

So basically "COME ON CHEMOTHERAPY........ME AND YOU GOT A WHOLE LOT OF WORK TO DO ON MONDAY AND THE WEEKS FOLLOWING!!!!

The one potential change actually could be decision to go back to chemo every 3 weeks instead of every 2 weeks. this would allow my body the chance to recover a bit more before we kick it down again.......after how I am feeling this week I would welcome that change.....I can handle a week or so of pure straight up hell if I knew I could have a week or even a few days feeling like this before the next round..........

They said I would be the first to notice any changes in the cancer(s) sizes and growth........at this point my tracheal/esophageal deviation has not improved, the node that they biopsied just below my left clavicle seems to be growing rapidly, BOB hasn't seemed to do much of anything.......so again....gotta get my shit together team up with my chemo on Monday and kick the shit out of Neil and Bob....so when they do my PETSCAN they will see shrinkage and tell me everything I was feeling is just one more sign that I need a "SHRINK" ha ha ha ha!!!!

So that's the medical update........and the end of my blogging for today, going to enjoy a nice dinner, a movie and rest good tonight so I don't disappoint myself when time get out on the water tomorrow!!!

Lessons learned this week:

-I am beyond blessed to be loved, cared for, cared about, supported by so much wonderful family and friends.....truly one of the luckiest folks on this planet!!!!

-I no longer can eat out.....price to pay is  too high (and takes too much time out of my day) meals need be cooked at home.

-Meals prepared lovingly by other folks  taste way better and I am sure have more healing properties than anything I could fix for myself ;) Mahalo Kehau(2), Terry and Nakoa, Kolea!!!

-My body has no interest in over doing the adult beverages ....one to two glasses of wine or couple beers and I'm pau........SHOCKING I KNOW!!!!!

-Meditation, Guided Imagery, Affirmations will be of great use to me at this time in my life.

-I still react like a  yr old when the postman brings a package to the door.

-This blog spot has spell check

-THE DEVIL IS IN CHARGE OF STATE MEDICAL INSURANCE PROGRAMS.......more about where that is all at in tomorrows blog.....

Lets end  this one on a positive note sharing a bit of the amazing beauty I was blessed to be a part of this morning:

Affirmation that stuck today: "I thank my body for teaching me to always remember the beauty of my own being. More and more I know that when I can LOVE and APPRECIATE myself. Take time to CARE for myself.......I am fortifying my immune system and giving my body a powerful message to be well."

LOTS OF LOVE AND ALOHA TO YOU ALL

P

"Reality Bites".....

Had a great start to the day....up with the sunrise, walk on the the beach......time to listen to some great meditation/visualization exercises......that will hopefully help alter my perception of my Chemo....was a great tip I got from a great friend/survivor (Thanks Krista).....By going into my chemo treatments with the thoughts that chemo is poison and also an enemy is going to do me no good........I need to come to terms with the fact that it is the chemo that is going to save my life and I need to re-establish our relationship to one of welcoming into my body, working together to destroy the cancer........
Sure I have gotten all the emails, posts, letters telling me how if I want to cure my cancer I need to ...."find YOUR God"......"drink the magic juices from the whooptie whooptie berry tree that only grows in the desolate areas of africa"...."drink the blood of a virgin guinea pig indigineous to Idaho"......"Lick the balls of the nene 15 times in a circular pattern 5 to the right, 5 to the left"......
All tips reviewed and under consideration........however at this point I am battling against time...my lungs fight for space in my chest if I need a deep breath, swallowing and breathing can be difficult because of my deviated esophagus/trachea...........It is the CHEMO working together with ME that is going to war against the cancer(s).........I am all for all kinds of alternative therapies, already benefiting from Reiki, hoping I can afford accupunture while I am getting my chemo, receiving LOVE, LIGHT, STRENGTH, SUPPORT from all of you.......yes when you pule (pray) I am well aware, and thankful.
But before next Monday I need to find balance of my MIND/BODY/SPIRIT and be prepared to become one with the chemotherapies as they enter into my blood stream.............

I am so beyond blessed to be living in Hakipu'u for so many different reasons.......I have been trying to get up each morning, wade across the water and take a walk down the beach......I had not ever noticed this litte bench set up, simple 2 cement blocks and a plank.....I usually walk until I start getting short of breath, then turn back home......get to "my bench" and here I can sit for however long I need, meditation, listening to the guided imagry and affirmation exercises.....cry.....laugh.......be angry (although its a little hard for be angry when sitting here) ......BLESSED.......


So this was the start to my blog entry this morning and I had planned on giving you all the latest medical updates so we could get all caught up..........was taking a sip of my coffee, ran my hand through my mohawk and all of a sudden my coffee cup was full of hair........

SERIOUSLY......THIS PULLED THE RUG OUT FROM UNDER ME MORE THAN ANYTHING ELSE SO FAR IN THIS JOURNEY.........knew it was coming, thought since I was past the "2 week" point when most chemo patients lose their hair, I would be a lucky one that held onto it maybe till round 2 ........or win the lotto and keep my hair the whole time........no such luck.
It just came from out of no where and once again I was forced further into this reality that has become my life........my sense of humor was gone....nothing funny about this......If you know me, you know I can a little vain when it comes to my hair,this was not about vanity (well not totally).......this was more......
For me this was not....."ohhh good the chemo is doing its work"......this was not about being "one step closer to recovery"..........this was about being forced to take the next step in to HELL whose doors opened to me on January 25, 2012.......difference with todays step forward.......the door SLAMMED SHUT AND LOCKED BEHIND ME......I am in it......just starting.....there is no "light at the end of my tunnel" I can see right now.......I am not alone, but need to remind myself of that frequently......this is not the worst of it, this is just the begining......do we know how bad its going to be NO....no one can ever predict......is it going to be "no big deal"......mmmmmm.....round 1 has already given enough hints that is is going to be somewhat of a "big deal"........I just need to be prepared for  it and hopefully preparing for the worst will only make things seem the best they could be.......this is my 'REALITY" and sometimes "REALITY BITES"..........
My affirmation today:

"I know the more I can acknowledge and accept what I truly feel without criticism or blame the more I assist my bodies natural tendency to be well....."

So I cried......wanted to cry out loud/scream.....but again the lack of space to fully inflate my lungs and the deviated trachea wouldnt allow it.......so it was a qiuet cry, an angry cry, a cathartic cry.......a damn messy face cry!!!

Been a long time since I cried myself to sleep.....felt good...worke up feeling better, ready get some house chores done......did good today.......then found my sense of humor again this eveing......of all odd places it had been hiding in the shower.......

I shaved the rest of my head this afternoon so now from the neck up I look like a old man.......after nice long 'au'au this evening I now look like a prepubescent boy from the waist down......damn no one told me the hair would fall out this fast.........seeing the drain full of hair and my shiny white hairless......ummmm.....what's the right word ........________________(you fill in your own blank)

I actually was in hysterical laughter at the site of it......ummmm not hysterical laughter because it looks different or "small" or anything.......ummmm.....ahhh forget it, change the subject.

So I actually hadn't planned on doing a blog today, too much reality for one day.....but now that its out I feel better......can have a good dinner.....maybe veg infront the tv....hele a hiamoe  early (always looking forward to 2:41 am - now that I know what thats all about!!!! ;) Mahalo Steve)

So all in all  today wasnt "bad" those are still lurking along the path I am being force to walk.....it wasn't "good" by any stretch of the imagination.....it just was........best part it is almost pau....and there is tomorrow to look forward to ......

Best way to end this day is to share this amazing shot my great friend Noelle captured at Laniakea Beach and shared with me.......have to share it with all of you.......

I'm looking forward to getting back up there and visiting with our honu 'ohana and all our amazing volunteers at Malama na Honu......I am so proud of all the work they do and proud to be a part of such and amazing group of folks!!