Friday, March 9, 2012

Pushing a 900lb boulder uphill......

It has turned out to be a LOOOONG week......reality is I lost track of all of it.....wasn't even really sure what day of the week it was when I woke this morning.
It has been storming here almost non-stop all week with NO END IN SIGHT......last time I was able to go out for an early morning walk was Wednesday, walked further than I have since home from the hospital......was "promised" morning sunshine from the weather a few miles from home and caught in some major weather.
Wet, cold, tired.... a couple mile walk back to house......and felt ALIVE!!!
At one point took my hood down, my beanie off and let the rains fall on my bolo head, run down my face and mix with the salt water leaking from my bilateral orbital socket ducts.......(they were "good kine tears")
Before I go into how SHITTY I felt on Thursday lets clear something CAN NOT GET SICK FROM BEING OUT IN THE RAIN......the rain DOES NOT carry the flu virus, you will NOT "catch a cold" from being in the cold!!!!
You need to come into contact with viruses or bacterias to get sick.......most common place to encounter these is another HUMAN BEING!!!
What I am trying say is when the "crash and burn" hit on Wednesday it was my counts dropping...NO MORE LECTURES on "your going get sick being out in the rain"  (please)

By Wednesday evening things were awful, I had become so tired just getting off the couch felt like pushing a boulder off of me in order to just sit up, breathing more labored and pain EVERYWHERE...worse by bedtime was so chilly here I couldn't get warm.
Thought "OKIE.... I'm at the NADIR 9 day mark...this is worse as it gets...can handle.....just listen to my body shut down and sleep......not the first time in the past month or so I have cried myself to sleep.....

I barely slept Wednesday nite into Thursday morning, not sure why but was up every 2 hours for bathroom runs......when I did "wake" and decide to get up and start my day Thursday, first thing I noticed was the pain in my joints and cramping in my legs.....not like charlie horse cramp.....just this dull constant cramping......attempted to roll over and get up and that's when I realized it felt as if someone had come in during the night and filled my entire body with beach sand......the heaviness of everything can only be described like was hard to raise my arms......breathing kind of labored.... wanted to cough but couldn't because of the headache (which hasn't really left since 2 weeks ago).......took a few minutes of prep work and I did get myself out of bed.......
Made the bed.....was headed for the shower and said FUCK IT!!! Crawled right onto the couch......there would be no bathing......then I remembered the risk I am at for developing mouth sores and forced myself up to do my oral care.....(c'mon onco nurses gotta give me props for that one!!)
ORAL CARE you ask?????........
Chemotherapy attacks rapidly dividing cells, such as blood cells, bone marrow cells, and cells of the mucous membranes that line the digestive system - this includes the mouth, esophagus, stomach, intestines, and the rectum to the anus. Chemotherapy may damage and even destroy some of those mucous membrane cells.

Oral Mucositis (in the mouth) - patients more commonly experience symptoms in their mouth.

If symptoms do appear, they will usually do so about 7 to 10 days after treatment starts. The inside of the mouth may feel like sunburn; some people say it feels as if the area had been scalded. Ulcers often appear on the lining of the mouth, the tongue, and sometimes around the lips. The severity of symptoms is closely linked to the strength of the chemotherapy dose.

Some may find it painful when they eat, drink, or even talk. If the ulcers bleed there is a risk of infection.
 Written by Christian Nordqvist
Copyright: Medical News Today theres your medical lesson for this blog entry.....

To avoid oral mucositis my treatment team recommends a mixture of salt/baking soda/ water - I mix a fresh batch every day and use it to gargle/rinse every morning/night and after every time I eat.......I have seen patients with wicked nasty oral lesions and I DO NOT WANT TO DEAL WITH THAT!
So, prolly overdoing it but basically every time I pass by the bottle I rinse......can't hurt right?!?!

I also like to think my mouth rinse has "extra special healing powers" .....mine is mixed with....
Salt from Kalaupapa....Kehau(1) and I were each gifted a container of this last year when we were blessed to spend a day in Kalaupapa doing some monkseal research and visiting with some of the remaining Hansens Patients......I don't know that I have ever been in a place so beautiful and full of so much energy and mana as Kalaupapa.

Gotta be plenty mana in that pa'akai!!!

Being in truly was one of the absolute highlights of my life! Beyond blessed to be there as an invited guest.....not stuck on a donkey or in a bus with groups of tourists.....tops  my list of places to return to once I kick this cancer shit (hopefully the invitation is still open)
It is hard for me to wrap my head around the fact that this Sunday will be the 1 yr anniversary of that life changing day.......
Crazy to think I was able to manage the 26 switchbacks covering just over 3 miles and 1664 vertical feet climb out of there in just over an hour - too close to missing my flight not to do it....

Fast forward one year later and my "daily exercise" past 2 days is going to mailbox and that leaves me winded........

(Not going give one history lesson on Kalaupapa if like know more try google......or read one of my all time favorite books "No Footprints In The Sand" by Henry Nalaielua/Sally-Jo Bowman)

WOW.....that was a nice little trip down memory lane....and I'm sure you appreciated the break from me whining and carrying on about how shitty I feel.......but lets get back to reality.......
Yesterday I could not believe that it's only been 2 rounds of chemo and I was feeling as bad as I was.....I laid on the sofa, couldn't tolerate the TV being on or music playing.......was under piles of blankets , dressed in sweats and of course my beanie (I LIVE FOR COOL BEANIES THESE DAYS)
The physical weakness/pain took over my psychological state.....I laid there thinking "no way I can do 4 more rounds of this"....."no way I want to do 4 more rounds of this"......."I want to give up, throw in the towel"........"PAU"......"NO MORE"........
I'm surprised I didn't turn to dust and blow away I leaked so much salt water.......

Made me think of this picture I took the other day....I feel like I am still standing on those rocks (Chemo Round 2)....still facing entering the water (chemo round 3) more solid ground (chemo round 4).....sink or swim to make it to the islands in the distance (chemo rounds 5 and 6)......

Then a good slap of reality following a 3 hour conversation about literally NOTHING  with Terry yesterday evening (great distraction)......and as I laid my tired beaten down body in bed ....I whole life I have been a good swimmer......LOVE BEING IN THE WATER.....THE OCEAN RUNS THOUGH ME AND SUSTAINS ME......

I got little more than a week before Round #3 to get strong and back on my feet....ready for some more battling......It's ok for now to sit back and let my chemo buddies do the work for me, let my body take over......but gotta watch the brain and my thoughts!!!
After Round #3 I WILL TAKE THE PLUNGE HEAD ON.....into unknown waters- sure.....but I have what it takes to make the distance to get to the island of "No More Chemo"......and if I get tired, falter, start to sink......I have all of you my huge group of PFD's to support me....

So it's "ALOHA FRIDAY" started with the 5:00 AM "wake up call" of thunder, lightning, crazy winds, pouring rains, hail and flooding...... AND the realization that my energy levels ARE RETURNING......I'm hurting, I'm tired....but it is half as bad as it was yesterday, which means tomorrow I can look forward to it being lets say 75% better (not gonna get greedy for the 1000%)

The "cabin fever" is making me batshit crazy..... but although its still gray, stormy, cold and just plain ugly outside the sun is shining in my hale......


1. I got my MEDQUEST APPROVAL FOR MARCH. Which means I have health insurance coverage retro to March 1......gotta keep somethings quiet but it is thanks to the family members of a very special patient I took care of in PICU just before getting sick that had a "hand" in getting this approval done STAT ......
Again I am back to "preaching" the lessons of MY LIFE  - live your life pono, do what is right, do for others -NOT asking "what will I get out of this", not expecting anything in return. BE MYSELF, BE HONEST, RESPECT OTHERS, TRY NOT TO JUDGE OTHERS AND DO WHAT YOU CAN TO HELP SOMEONE ELSE IN NEED IF OPPORTUNITY PRESENTS ITSELF.
Let's make sure I follow this statement up with acknowledging I AM NO SAINT - never have been, never will be.....I would be full of shit if I told you I have lived every day of my life like this, full of shit if I said I never hurt anyone, full of shit to say I've never done wrong.......But lucky to say that for the most part of my existence I think I have done more good than harm ....and am now living proof that what goes around comes around - who would have thought that doing what I love to do and helping this patient and family in a bad point in their lives (and yea allowing them the opportunity for some laughter at my expense) that they would be here for me in my time of need.

2. I got a call today from the manufacturers of one of my Chemotherapies that due to my circumstances they are going to provide that particular chemo to me FREE OF CHARGE for the next year......basically the hospital gives it to me and then the company replenishes their supply free of charge......CRAZY RIGHT!!! I don't know the cost of that one chemo but I do know the total cost I was charged for my first two rounds was $13,000.00 for the 4 chemos (just the chemos - not including the other meds/nursing/charges for infusion room...blah blah blah....OH and guess what.....Now I have health insurance so hopefully majority of other 3 chemos going be covered now too.
How's that for my "guardian angels" working some behind the scenes OT!!!

3. I received and email flight itinerary of my BROTHER SCOTT'S FLIGHTS TO O'AHU!!
SOOOOO STOKED!!!  Since it falls right at spring break the flights to get here from Colorado were insanely expensive.....and I had given up hope that it would happen......but its happening.

He will be arriving on island just about the exact time the last bit of chemo round #3 is infused into me.....which is great timing.....hopefully there will be some consistency to my "feeling good" for the days after chemo....been a LONG time since we spent time together and hard to put into words how excited I am that we will be able to be together!

How's that for a blog entry full of GOOD STUFF!!

So even though its still stormy outside......there is still plenty of beauty around if you look close enough......although I'm still feeling shitty and beat up's better and more tolerable than it was.....may not get sunshining tomorrow....but I can guarentee the time will come when the sun will shine again!!!!

"Within you lies a power greater than what lies before you" - Anonymous

Lots of Love and Aloha to you ALL


  1. Patrick - I read every line of strength, hope and resiliency with admiration, and respect. You have lived your life Pono ~ and you are an amazing person! and your will persevere. The darker the night the nearer the dawn my friend. Never EVER lose that HOPE and resiliency. I look forward to that blog where you say "I have now been cancer free for over a year". You are truly an inspiration! Love you!