Saturday, March 31, 2012

no more NADIRS........

Holy Shit!!!! who was that sad pathetic hacker that got into my blog and put that last post up?!?!?!?!

Mahalos for all of your concerns......promised this would be a bumpy ride.....and well  thanks for sticking close by!
I am actually doing so much better, and was pretty much after getting all that out of my system and looking inside/out for what was causing those thoughts and feelings.
Yes, coming down off of the high dose steroids is a "mind bender" that has been leaving me with a good 24-48 hours of depression, add to that my coming down off a great week spent with my brother and missing him after he was gone......then the loss of sensation to my finger tips on top of everything.
I did talk with the nurse at the cancer clinic (didn't want scoldings when I show up for next chemo and they find out I never tell them!) The loss/dampening of sensation hasn't gotten any better or any worse, so for now we do nothing.....will make a decision about possible lowering the dose of my Vincristine (the chemo responsible for the peripheral neuropathy) just prior to round #4.
One positive thing that ultimately came from "the finger tip trip" was that after a loooong time, I finally got my ukulele out of his case and started practicing again.....
One of these days I am going to kanikapila with no shame!!!

The real "culprit" of my trip down the black rabbit hole I realized during the week is the whole NADIR concept......a concept that is truly subjective....
a quick "google search" will tell you:
 When used in reference to chemotherapy, it describes the point when blood cell counts are at their lowest after a chemotherapy treatment. It is commonly referred as the "nadir period" or simply "nadir" among healthcare workers and patients.
The word is also used figuratively to mean the lowest point of a person's spirits (according to Wikipedia)......Interesting huh?!?!?!

Basically what I have done since the start of all of this chemo therapies is focus A LOT  on my nadir....actually going so far as to "block off" the 7-10 days on my big dry erase calendar/scheduler - and it became a "symbol" of sorts to me of impending doom and gloom....
I don't negate the fact that there is a period of decreased blood counts days following chemo therapy, but they are not always 7-10 days after, that is a completely subjective, individual experience numbers.
This is the time when a chemo patient does need be "more cautious" about contracting infections, protecting self from injuries that would cause bleeding and feelings of fatigue/shortness of breath with the decreased RBC's.
Was a surprise to me right before my round #3 to find out my ANC never did recover after round #2 and I got that seed planted deep in my mind and fed/nurtured it with having had done too much "research into" folks reporting round 3 of R-CHOP (my chemo regimen) being the "worst experience of all the rounds".....because "they hadn't fully recovered from round #2 it made round #3 that much worse"......
YUP YUP.....I drank the "KoolAide"..... 
And my nadir came.....a SUCKFEST FOR SURE...but honestly #2 was WAY worse than #3......didn't take long for me to trade in my "KoolAide" for a big cup of "Hawaiian Punch".....a swift punch in my own head followed by a swift kick right in my own ass.....
I regained the balance of my mind/body/spirit and decided I wasn't going to give into the nadir, sure I'd watch for it and listen to my body and give it what it needed when it needed it, rest-nourishment-quiet times etc etc
Got myself back to my morning walks....worst day of low counts didn't get very far, but made it to my bench at my "secret spot"
and found some of the inspiration I was lacking....
Helped having my "241 Hui" reminding me they were around..

If you missed the whole "241 Hui" thing I'll need do a special blog describing that all.....lets just say I keep good company on my morning walks...
By Wednesday when I "should have been at my lowest point in my counts" I actually made the long morning walk all the way down to Kualoa Beach Park.....Felt GREAT....even if it was the closest I have ever come to having to call on Terry or Nakoa to come pick me up cause didn't think I had the "fuel" to make the walk back home.
My spirits were up, smile was back.....took a good long rest.....sitting and taking in the beauty I am so blessed to be surrounded by.....reminded myself of the blessings of all of you in my life...and made the decision of
Sure my counts will drop at some point after chemo, they may not even recover fully before next rounds.....WHATEVAHS!! I will trust and listen to my body from on now.
No more marking out the days on the calendar 7-10 post chemo as some sort of impending doom/sentence......again, going on faith and trust in my mind/body/spirit connection......honestly had it not been for that back in January I would not have been diagnosed when I was and finding out this week that the xray mid January was clear and 2 weeks later this shit was all up in my was moving fast, It was the listening to my body (well ok and the inability to breath) that got me in.....hard to fathom what could have been if I had waited longer.....

The new canoe, Ka'aumoana,  that Nakoa, La'a and Murph built is finished.
I was STOKED and so GRATEFUL when Nakoa came over the yard to check in on me, which prompted me to get off my ass (post nap) and I was out the door to see Ka'aumoana out in the air and sun for the the first time......for many many reasons it was a full on chicken skin - good kine tears spirits were soaring and that helped to re-energize my tapped out "batteries" and I was able to help Nakoa stage the canoe
"Staging" means this was the first time her ka'ele (hull), 'iakos (outrigger booms) and ama's (outrigger floats) were pieced together
What an amazing and beautiful site !!!
This particular wa'a represents and holds a lot of different importance and meaning for many of our 'ohana (family)  and hoaaloha (friends)
One huge thing Ka'aumoana represents for me is MY FUTURE.....what I have to look forward to .....
Once I kick the shit out of Neil and Bob and all this cancer stuff is behind me I will be back to work on the water.....sharing our sailing canoe culture with the "masses"......I am looking forward to getting back to hoʻopaʻa haʻawina (study), aʻo (learn) and hoʻomaikaʻi (appreciate) to reach my goal of qualified trusted ka mea ho'olele (steersman)

Another great turn that accompanied the staging was it prompted me to get my "new camera"out...I had just gotten a brand new Canon 7D just before my diagnosis....never really used it much...last photos I took were of the rainbow over the hospital the day of the E Pule Kakou.... I still have never downloaded those images and hadn't taken the camera out of the bag since.....the Ka'aumoana sat there posing and begging to be photographed....busting what ever was blocking me from my photography wide open.

There not only is so much to look forward to when the cancer shit is behind me there is also SO MUCH TO LOOK FORWARD TO EVERY SINGLE DAY.....goes back to the saying
"Cancer is a word......NOT a sentence"
It's a suck-fest and I wish I wasn't in the middle of it, but the reality is that I am....the other reality is life moves forward and I can either chose "door #1" to continue on with the ride as much as I can ....or  "door #2"I can sit my ass on the sofa all day feeling bad for myself and my situation......
can you guess which door I chose???

Many many mahalos to all of you for again for your love, support and generosity - ESPECIALLY when I am feeling the chips are down....if near or far your words of encouragement are priceless and carry a lot of weight and influence on me.....I will forever be grateful.!!!!
Will this be my last trip down the "black rabbit hole".....I hope so , but honestly can not make promises....I do know if/when I visit that place again it will be short lived and I have ALL OF YOU TO COUNT ON  to reach down, grab me by the ear and yank me back out.

Damn...."241 Hui" had me up again tonight and wouldn't let me back to sleep....maybe was to get this blog out....its 5:30 am in Hawai'i Nei.....time to get the day started.....maybe I'll finally take the good camera out for a sunrise sesh...


"Life is one big road with lots of signs. So when you riding through the ruts, don't complicate your mind. Flee from hate, mischief and jealousy. Don't bury your thoughts, put your vision to reality. Wake Up and PLAY UKULELE!!! "
~Bob Marley

Tuesday, March 27, 2012

Nadir #3......

Two things to get off my chest from the start:
#1. What the fuck is "the good cancer"???? YES.........for the second time I have been told how "fortunate" I am to have "the good cancer".......SERIOUSLY?!?!?!?!  Do folks truly believed there are good and bad cancers??? How the hell do you decipher the good from the bad?!?!?!?!
#2. STOP comparing my cancer and my situation to others that you have known.....I DO NOT WANT TO HEAR "HOW BAD THEIR SITUATION WAS" ....I am well aware of the blessings in my life.....STOP TELLING ME "HOW LUCKY I AM - to not be going through what so and so went through"........


I am trying to get myself out of this "anger place" I have landed into the past few days.....not having a whole lot of luck.
Had and amazing time with my brother while he was on island, so thankful and blessed that he was here during a "good week".....I was full of energy, spirits were up and was really able to enjoy the time we had together.
He left Saturday.....then like a reaper hiding in the shadows my nadir came sneaking in.........riding on the heels of the diminishing pain that followed my Neulasta injection.....
Was off the high dose steroids Friday, so by Saturday could feel my mood slipping, by Sunday morning I could feel the "crash" and depression coming.....the hardest part is the moments of  feeling hopeless and the tears that come out of no where......might try talk to the doc about putting me on a steroid taper next time instead of the abrupt stop.....heard some folks on the same chemo protocol I am on get it done that way.
Got up yesterday (Sunday - gotta jog my "chemo-brain")....for my sunrise walk, was feeling "good" could tell the fatigue from the oncoming nadir was there, but made it a good distance and spent plenty time soaking up the early morning sunshine...for sure helps my home still not feeling too bad, ready to start the day ......hopped in the shower and about halfway through lost the feeling in my finger tips.........This is a not to uncommon side effect of the Vincristine.......
I  just wish someone had explained it would come on all at once without warning...for some reason I deluded myself into thinking it would be gradual.
It is hard to explain the feeling....everyone keeps using the term "pins and needles"'s not like started like a sore feeling where my thumbs meet my hands ...I realize now I was aware of this on my morning walk...then BAM  the tips of all 10 fingers shut they just feel "asleep" ....I truly don't know the words to describe it.....I am still able to use my fingers, although texting and typing are a far my feet and toes doing some of the cramping in legs/calves but had that when nadir round 1 and 2........
Had my first burn...went to take a pizza out of the oven and thought I had the towel covering all my fingers but apparently one finger was exposed and tip went onto hot pizza did that's gotta be a good sign right?!?!? Now its just a blister that doesnt feel like nothing.
I was just one more of those "solidifying" moments....when I was made aware that I have entered the next level of this hell I am being forced to walk through........I cried.....I cried HARD....but then I got angry, really really ANGRY....and still have yet to find a way to let go of the anger.......
Then for what ever reason...I think it happened rite before my second nadir??? I had about 3 hours sitting on the toilet......WTF?!?!?!? Was worried I was going all dehydrated, but luckily I have cases and cases of "my special coconut water" that I was tanking to make up for everything coming out......
Debated calling the doc....but was worried with the onset of signs of vincristine neuropathy, the diarrhea and my Nadir moving in......all on a Sunday nite , I would wind up buying myself a trip to the ER and an admission to the hospital......and you know my top 3 goals through all of this....#1 BEAT IT.....#2 NO INFECTIONS.......#3 NO HOSPITALIZATIONS!!!! Truly I kept a close eye on all of it and for sure if I thought at any point it was really necessary I would have gone to the ER .....I PROMISE ;)
Last night was a mostly sleepless night.....primarily because of the pain, everything on my body - I even went so far as to pop 2 percocet, something I haven't done in a while and really didn't want to do...I did manage about 3 hours of consistent sleep.
Woke this morning with that feeling of fatigue taking me over, but still got my ass up and went for my walk.....was a short beach walk to my "special quiet spot" and spent couple hours being quiet and drinking in the beauty around me and the feel of the sun.
Got out and did some "errands" (Thanks Len!!) MAJOR SUCKAGE FACTOR...when just walking from the parking lot to the store is enough to wind me....but again knew this was all part of the nadir that was coming.
And I did make the "agreement" that if we did chemo every 3 weeks instead every 2 weeks ...I would be willing to endure "pure hell" for a few days to have that "extra week" of feeling good.......
I can at this very moment feel the nadir coming down on me.......I kinda "shuffling" now  and feeling like an old old man......sore/stiff, headaches, shortness of breath comes easier and my "chemo-brain" playing all kine crazy tricks on me......
So hopefully this blog answers the questions of how am I doing .... and helps shed light on why I couldn't be more "elated" last Monday after round #3 of chemo infused and I kept hearing the term "halfway there".......I have actually come to realize...."halfway there" doesn't exist in this situation.....sure technically 3 out of 6 is "half way".....but what most folks don't realize is that with each round the body becomes weaker, the fighting gets harder.......THIS IS NOT ME BEING "NEGATIVE" WITH MY is just the reality of this suck ass situation........

Will talk with the oncologist tomorrow about the neuropathy....seems from what I can tell 2 choices are to either delay treatment to see if it subsides or to cut the dosage of the Vincristine.....either one does not thrill me..... I want the max, I want it now and I want all of this over with..............

And yes your right I am tired , I am pissed off and I have a right to be.
I am also doing my best to stay positive, I realize everyday the blessing that are around me, I am so appreciative to have so much love and support from you all. Will face this nadir head what I gotta do to get through it day to day until I am on the other side of it......


Friday, March 23, 2012

"Half way there.......??????"

So Chemo Round #3 is behind me...... was all set to go, had my "Supah -P" shirt, My "Supah -P" cape (actually my quilt my mom made me years ago).....spirits were up and I was feeling good........
Then .....not really sure why during my Rituxan infusion (the first of the 4 chemotherapies I get)....the nausea/puke monster hit.....Timing was odd because I had receivied all of my pre-meds before starting the chemo's......and from what I researched the Rituxan doesn't usually cause nausea/vomitting while infusing.....but as usual, why would I do anything by the book......

So.......following a big dose of Ativan and still feeling puking the rest of my day looked little something like this....
NOT the way I like to roll!!!!........Was of course blessed to have Kawika at my side for my infusions, although there was little talking ....more was a comfort knowing he was there.
By the end of my infusions (about 7 hours).....I was up and feeling myself again.....NO I DID NOT BRING ANY SPECIAL MEDS FROM HOME!!!

So....that was round chemo round 3 of 6......I have gotten a lot of congratulations about being "HALF WAY THERE".......I know what that means, thankful for the love and support, the excitement, the hope.......BUT unfortunetly FOR ME  - my "halfway point" will not be until I get past my nadir next week.....the infusions pretty much easy, the week following infusions usually really good (again the high dose steroids help) its the period of nadir when I lose my counts somewhere around 7-10 days that at least after round #2 was a pure forgive me for not being able to "kick up my heels" at this time.....once I get through the worst of round 3
(and hopefully after round 6 done completely)


For sure one something that had me perked up at the end of my infusions was the arrival of my brother Scott. He got in from Colorado pretty much just as my infusions were pau and arrived at the Cancer Clinic just about same time as I was being discharged.

Was a long day for both of us, so we headed home and I was able to introduce him to Hakipu'u.....I think if it weren't for the wife and kids back home he wouldn't be leaving!!!
Was a good evening talk story, catch up, enjoy each others company....
Then in the morning we were up and GOING!!!
I got him up and out on my morning walk with me....thankfully I was feeling great and we made it all the way down to Kualoa Park.....was a beautiful sunny morning.... first time I had a companion on this walk with me......and thankful to share the experience with him.
I was pounding the anti-emetics so was stoked when able to take him to Uncle Bobo's BBQ for grindz and I actually kept mines down!!!
We followed lunch up with  SUP'ing around Hakipu'u with Terry and a friend of hers.

Scott was a natural and we had a blast....of course for me to be out on the water one day after chemo.....just call it BLESSINGS....
So blessed to be surrounded by so much love and support and to have opportunities at "normalcy" no matter how long they last.
Said it before and will repeat it over and over......

The "Hiccup Monster" did show up the day after chemo.....luckily a few weeks back a good friend shared a study with me that was done on patients who experience post-chemo hiccups....I thought we were a "rare group" but some reasearch showed American Cancer Society reports that 30 percent of chemotherapy patients suffer from hiccups as a side effect of treatment.
Again the 1st hour of the hiccups, little funny, plenty hour 2 leads to hour 3 not so much fun as the pain and fatigue set in....Luckily I had talked with my onco the morning before my chemo and got a script and was "armed" with some Baclofen just in case...I am doing what I can to limit the amount of meds I take........
Seems to be a losing battle....but we are strong at work at changing this and moving into some more naturopathic, naturally occuring alternatives as an adjunct to my chemotherapies.

So I did the "hiccup game" for about an 2 hours....the upside down drinking trick didn't work so well,,,,but I also wasn't prep'd with bad!
So took my pill and sure enough it worked, I had about 3 hours hiccup free....then they were back...and this time with a VENGANCE.... I didn't know you could have "doubled up hiccups" before the first one passes another one it on you.....again first few funny...after that its torture....down the hatch with another pill and lil'sumptin to help me sleep and the "hiccup gremlin" was satisfied and I was able to get a good nite sleep.

My blood tests on Monday showed that my ANC never really recovered after round 2 of Chemo....

Absolute neutrophil count (ANC) is a measure of the number of neutrophil granulocytes also known as polymorphonuclear cells, PMN's, polys, granulocytes, segmented neutrophils or segs) present in the blood. Neutrophils are a type of white blood cell that fights against infection.
The ANC is calculated from measurements of the total number of white blood cells (WBC), usually based on the combined percentage of mature neutrophils (sometimes called "segs," or segmented cells) and bands, which are immature neutrophils.

Break it this "lesson" down a little further :
What are white cells? Blood contains three main elements. The red cells which carry oxygen around the body from the lungs, platelets which stop us bleeding when we are cut, and white cells which help our immunity and protect us from infection. There are a number of different types of white cells but one of the most important types, are called neutrophils or granulocytes. These protect us from bacteria, which are the most likely source of infection during chemotherapy.
How does chemotherapy effect your white cells? Chemotherapy affects the rapidly dividing cells within the body. The cells (stem cells) which make white cells are found within the bone marrow, also grow fairly rapidly and hence are often damaged by chemotherapy. Hopefully the most rapidly dividing cells of all are those within the tumour. This is one of the reasons that chemotherapy is given in cycles, to allow the white cells to recover before the next injection. Hopefully less normal cells are killed at each cycle than tumour cells and more normal cells recover than tumour cells before the next cycle.
How does Neulasta work? Neulasta is similar to a naturally occurring protein which stimulates the colonies of white stem cells within the bone marrow causing the level of neutrophils in the blood to rise (Granulocyte Colony Stimulating Factor - GCSF). Increasing the levels of neutrophils in the blood stream reduces the risk and severity of infection. Several well conducted international studies, have proven the effectiveness of Neulasta over no medicationpreviously commonly used white cell booster Neupogen.

.....So decision was made to start me on a shot of Neulasta 2 days after my nex 4 chemo's
Neulasta to the clinic we went Wednsday morning for my shot...come to find out because of the co$t of the shot, I can not do it myself at home......seems odd that its more cost effective to make the patient schedule and appointment in a busy clinic, drive to the hospital and have to have a nurse administer the injection (but thats just my inner nurse talking).
Following my shot we were off so I could show off some of "My Hawai'i" to Scott.

Was a one of the best days I have had in a LONG TIME......needed this time spent together!!
Hit up Eastside...blowhole look out, Sandy's, Makapu'u, Nalo, Lanikai, Kailua....
WORN OUT BY THE END OF THE DAY.... (Good Kine Wornout)

Wednsday evening I was feeling a bit achy ....having some bone and joint pain.....Thursday morning when I woke, I layed in bed never before so aware of my skeletal system and my joints....pain was so prominent.....
Pushed through the pain ...did a few hours of MORE financial paperwork - got it filed witht he state and then was blessed to have an afternoon of quiet up Luluku with Kehau (#2) a good friend Mark and his 'ohana.

Looking forward to getting an OKIE from my doc's to get back to work in the lo' has been far too long!! Was amazing how being up there helped balance my mind/body/spirit........
Was glad Scott got to experience and see some of what few here do.

Back to the "Neulasta Lesson"

#1 listed side effect per manufacturer.....Spleen Rupture. Your spleen may become enlarged and can rupture while taking Neulasta. A ruptured spleen can cause death......
NICE basically I just just gotta stay on look out for left abdominal pain/left shoulder pain.

#2 listed side effect: it is common to have aching bones and joints for 2-3 days duration starting 1-2 days after the start of the injections. This is usually mild and is caused by the bone marrow working harder to produce more white cells. Occasionally it is more troublesome and pain killers are required.

I had been "warned" about this by my injection nurse...she said it is more prominent in younger patients whose bone marrows are more likely to ramp up harder and faster.....I have seen this in the pediatric population and they have pretty much all decribed it as pretty awful and for some the worst of everything.......

THEY WERE NOT LYING....  this is a whole brand new level of pain/discomfort....hard to describe....I have been up most of the night experiencing experience moderate to at times severe bone/joint pain, mostly in the legs, and pain in the back and neck....even my hydrocodone has hardly helped.....but I am also not willing to go back on that crap 2 pills every 4-6 hours....remember the constipation stories......NO THANKS!!
They pain I guess should pass in about 4 days....I have seen a lot of blogs talking about the use of Claritin to help in this situation, because it hasn't been tested or approved by the can not be "officially prescribed or recommended"....but seems plenty patients are stating getting good relief...or at least lessened symptoms....only thing is supposed to start taking it the day before injection...then 4 days after.....guess I am a little "behind the ball" on this one.......there's always next time.

Got to remember things could always be worse!!! I am up and moving.....I think a good long walk will help loosen me up. Got Scott here till tomorrow evening so gotta make the most of time we have together....planning to head westside (please let the sun be shining) so can get him out on the sailing canoe and let him experience first hand what has become so much a part of me and my life.

Put one foot in front of the other
And soon you’ll be walking cross the floor
Put one foot in front of the other
And soon you’ll be walking out the door

You never will get where you’re going
If you never get up on your feet
Come on, there’s a good tail wind blowing
A fast walking man is hard to beat

Put one foot in front of the other
And soon you’ll be walking cross the floor
Put one foot in front of the other
And soon you’ll be walking out the door

If you want to change your direction
If your time of life is at hand
Well don’t be the rule be the exception
A good way to start is to stand

Put one foot in front of the other
And soon you’ll be walking cross the floor
Put one foot in front of the other
And soon you’ll be walking out the door

If I want to change the reflection
I see in the mirror each morn
You mean that it's just my election
To vote for a chance to be reborn
-Bass, Jules


Monday, March 19, 2012

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

T'was the night before chemo and I am blessed to have a very clean house.
Neither of my "creatures" are stirring, because I gave them both a catnip laced mouse.
My "Supah P" shirt is out and ready to wear.
My day bag is packed with my blankie, jolly ranchers, barf bags and clean underwear.
I have high hopes that I will return home tomorrow evening wearing my original pair.
Soon I'll be all nestled and snug in my bed...while visions of being cancer free dance in my head.

Tomorrow morning I'll rise and cross the Ko'olau Mountain I'll go, headed for the Cancer Clinic, I have front row tickets for the Chemo Show.
Blood will be drawn, labs will be checked. Doctor will examine and I'm sure I'll figure out a way to be a pain in the neck.
My port will be accessed and the chemos will flow......
all the while I'll be repeating


The days since my last blog entry have been GOOD!!
I have been very aware of the increased fatigue following round 2.....I guess they say it just continues to worsen a bit with each round.
Had a short lived bout of mucositis....not too awful. Weight is being maintained, appetite is good. Spirits are up.
Felt real good when got up Wednesday morning and hopped in my jeep headed for the Westside....was a well kept secret....think it was a pleasant surprise for Nakoa and Terry when they arrived and found me setting up the canoe...
Had a special friend on island, visiting with a group of surfing wahine's from East coast of the states.
Was of course great to be back on the canoe and have 2 hours of the "best medicine" for my spirit and my mind...felt like FOREVER since cruised the Westside with Captain Nakoa......damn I miss it!

Wish I could last longer than 2 hours......

Thursday was "errands day".....Made it townside to try "save" the laptop at BestBuy, luckily they were able to!! Made it to Home Depot and got some cushions for yard chairs....had total "chemo brain" moment forgetting everything else I needed, then topped it off with a "portagee moment" of forgetting I had the list on my iPhone......
Was EXHAUSTED anyways and headed home....amazed how quick the batteries tap out these days.
Stoked to have the cushions that night though, been a long time since sat out under the stars with a good bottle of wine and great company, just talk story....

Friday, morning visit with a great friend .....inspired me to spend 4 1/2 hours that afternoon doing my online Social Security Disability forms/applications......YES I said 4 and 1/2 hours .....and I still need print stuff out and hand deliver to the offices......unreal how twisted the system is.....

Shawna, Deroy, baby Sophia and Kolea showed up in morning, cooked me breakfast of Crepe's, Frittata's and Mimosas....was great to spend time talking story, sharing memories laughing and loving.
Introduced baby Sophia to baby Makai.....was love at first site...

I got even more spoiled when got to spend afternoon with Makai while Terry mowed the yard!!


The spoiling continued well into Saturday when I got a special delivery......Much MAHALOS to Jo, Len, Brandon, Kehau and the rest of my Egdamin 'Ohana....

They gifted me with a futon,  so now when my brother Scott arrives (or any one else who like have sleep over) they can have a room and bed to themselves!!!
So BLESSED to be so well taken care of .

Today was all about getting the house in order, chores and errands done (mostly a good way to deny tomorrow is "chemo day")
Had a GREAT afternoon visit with some very special friends....My friend KenG who I have worked with at Ocean Paddler TV and his good friend Alan.
Ken introduced Alan and I while we were both inpatients on the Queens Cancer Unit....Alan is battling Lymphoma as well only  his battle makes mine look like child play....
Like me Alan was diagnosed in January.... we are both "newbies" at figuring out our way through our cancer mazes......
It was great to have a few moments of conversation with someone who can truly understand some of my thoughts, feelings etc etc without me having to explain......was a few times when I felt like we were speaking a language only we understood.......blessed to have made a new friend and someone I can truly stand shoulder to shoulder with as we battle our ways to "SURVIVOR STATUS"
Sorry no pics to share from our visit (hoping to get some copies from Alan's sis who took plenty)
Please check out Alan at


We are already planning plenty adventures so will have plenty pics to share with you folks in the future.

So now its a quiet, chilly peaceful night in Hakipu'u. The house is cleaned, everything packed and ready to go to Cancer Clinic in the morning, lab draw at 0830; appointment with Oncologist at 0900, Chemo scheduled to start at 0930 and if all goes well....the "420 minutes" they set aside for my infusions will go by without incidence.......I may even be able to get out in time to meet my brother Scott at the airport.....if not got my amazing friend, confidant, strong foundation Kawika who will once again be at my side during chemo and will grab my bro at the airport and deliver him to me at the hospital.   So looking forward to a week with my has been far too long!!
So.....what's it like the "night before chemo".......thoughts running through my head>>>>
OKIE #3 means we are HALF WAY TO THE FINISH.......I HATE not knowing what to expect.....PLEASE don't have a reaction like last time......PLEASE don't let "the Puke Monster" get a hold of me on this round......anyway that you could cut me some slack on the hiccups would be greatly appreciated.....HALF WAY TO PAU CHEMO.....positive response on CT after round 1 - this shit gotta be working....... What if this Shit not working.......Nadir after round 2 worse than round 1 , barely made it mentally after round 2, how am I going make it if round 3 lucky/fortunate/blessed to have so many to support me, lift me up and make sure I make it passed round 3 and will see me to the end of round 6.......really, really don't want to be a puking/sick mess while my brother is here.......even if all we do is sit on sofa for the week -being together will be a wonderful gift...... awwww FCUK its back to that steroid roller coaster.....ahhh damn I forgot to put the chucks down when I put clean sheets on the bed....

So, yah....basically the brain is going non much "what-ifs" and "un-knowns"
Time to focus on the "for sures" and the "knowns"
Those are..... that I am loved more than I ever imagined possible....the support system I have been blessed with is unimaginably strong....I am times when I am weak there IS someone at my side and if I start to fall there IS someone there to catch me/break my fall.
What ever is coming my way - I CAN AND WILL HANDLE

I decided on a small change of thought......always knew I am NOT "DYING OF CANCER"
Decided I no more like the label "LIVING WITH CANCER"
Rather than someone "living with cancer"  I am someone

OKIE - time to get some "sleep"....gotta be well rested and "beefed up" for tomorrow...


Tuesday, March 13, 2012

My "Pillow List"....

Thanks for the shirt Sam...I wear it with pride!!

So, the "bounce back" from Chemo Round #2 hasn't gone exactly as I had hoped for.....more of a big dose of reality. I am doing a lot better than I was middle of last week.....physically AND mentally....It's the constant FATIGUE that will not loosen its grasp on me.
I still have my "independence"....ADL's no problem, fun events for the week are trips to the grocery and the drugstore....The recent weather of course had a lot to do with all of that...clearing skies will give me a chance to at least just be outside doing something or truth be told just sitting around doing NOTHING. Actually I am sitting out in front of my home in the sun doing this blog right now.  I gotta get some sun on my WHITE BOLO HEAD!! I can no more take "those looks" from folks when I remove my beanie or hat and there is that "moment of realization" pity look....

Hard thing right now is apparently I "look so good" on the makes it harder to describe how I feel on the inside....
I just have to get myself out of bed in the mornings, assess the situation and move forward...finding I need to get things done early on before the batteries run low, then when they are depleted I have to accept more fighting it. I am doing my best to beef up my mind/body/spirit before Round#3 next Monday.
Been so blessed having so many folks step up and deliver meals to me.....not sure you all have any idea how great that is, that at the end of the day when I just got no more gas in the tank....a hot meal is dropped off or just needs be warmed up. MAHALO!!

It has been great on my "up days" to have visitors and be able to just sit, talk story, share memories, laugh, cry all of it. Sorry to some who were supposed to come visit and I just wasn't up for it....I can only make plans day to day at this point and please understand that texting as "not personal" as it seems, is on some days a save for me, when simply just do not have the energies to have a phone conversation.

Since the day the "C-word" became a part of my reality, numerous times the topic of "BUCKET LIST" has come up.......I have given this concept a pretty good amount of  thought and how I applies to ME and MY EXPERIENCES.....

First of I do not and other than for a few brief moments of  darkness think of myself as "dying of cancer" I am LIVING WITH CANCER....what does that truly mean?? Fuck all if I know...I'm just living my life day to day at this point..... I do know I am NOT "kicking any bucket"
For me the concept of bucket list is for someone who is facing an end of life issue and realize they have lived a life they are not satisfied with....
Regrets, coulda...shoulda....woulda.... we ALL have them to some degree, right?
In my situation I have been fortunate to have lived a very full life see where I came from and follow the journey of my life to the point I am at right now....I have been BLESSED A THOUSAND TIMES OVER!!
I have travelled the world....experienced life surrounded by amazing family and friends..... I have been in love....have had my heart broken.....perhaps I may have broken a heart or two (?)....I have held a newborn infant (was in nursing school and the thing shot out "fresh from the vag" thus sealing my fate as NEVER being an L&D nurse!!)......I have held a child as they have passed from this reality we call "living".....I have been a part of saving a child from passing from this reality we call "living".... I realize now more than ever that I have had positive influence on many lives and if I were to die today I would in fact leave a legacy...I have learned different languages...learned to understand, appreciate and respect other cultures......laughed so hard I couldn't breathe....cried so hard I couldn't breathe ......have experienced things that more than once have taken my breath away... jumped from an airplane.... scaled tall buildings.... broken bones.... swam with turtles, dolphins, sharks, rays......heard whale song underwater with my own ears....the list goes on and on....
If I were to die today I WOULD BE OKIE WITH THAT.....if that were my fate, so be it, I could go IN PEACE....


There is A LOT  more living I have to do .....plenty more skills to learn...plenty more places to see...plenty more experiences to be had....plenty more friends to make.....maybe get lucky and get one nother chance at falling in love.....hopefully not break any ones heart....

But for me to sit here and compile a list of things I MUST do before I die, after looking back over my life me would just be plain SELFISH....and I think impossible....
I will continue to live my life, while I have cancer......continue to experience life, share life with family and friends, build new memories, learn new things......Sure there might be some limits while I am stifled physically.......but if you thought keeping up with me and my life was a challenge in the past ....just wait until I am no longer someone with cancer...but rather a SURVIVOR!!!

So for me rather than "BUCKET LIST"  I am going to have a
this will be MY list of things I would like to accomplish daily from when my head leaves the pillow till the point that I lay it back down on the pillow......ONE DAY AT A TIME....

You never know how strong you are, until being strong is the only choice you have.


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

Tuesday, March 6, 2012

No rainbows without rain....

Been raining for days on end....I'm not taking little rain here and there ....talking pouring, thunder, lightning, yard under 2 inches of water rain.....I been feeling pretty shitty and spending most time in bed or sofa surfing, so not too bad for me since I don't gotta be no where.  Suck thing is I gotta keep telling folks not to come visit because all the flooding....

My "expected" NADIR was yesterday (one week after Chemo Round #2).....this one showed up a little early.....felt it coming on strong Saturday night into Sunday.....had a few good days after chemo and a extra special day on Saturday......went down to Aina Haina and spent some time with the kids....
They were pretty stoked to see me....we had to keep it a surprise, never like get their hopes up and then I don't feel good or something comes up and I'm no show....

Micaiah  right away had to go put jeans on...I guess so could continue the history of my "mini me".......right away he grabbed the box of card games we always played and it was game on like old times......he seemed pretty unfazed by my bolo head....even made a few cracks about it (HE is the ONLY one with permission to make bolo head cracks!!)....

At one point telling me I looked like "Megamind, except I wasn't blue and I'm no bad guy"......funniest was him playing the eye spy game with his grandma and I hear him say "I spy something BALD!!!" LOVE that kid!!

Was for sure the perfect medicine spending the afternoon with them. These are my nephews Kamakana and Micaiah , my Niece Sarai.
Kamakana spent most of the afternoon napping, he wasn't feeling good. But, he was wide awake when time for me to leave (of course).....and I was thankful to have some of "our special moments" together. He was alert, focused right on me, mouth going (had his art-nose on so couldn't verbalize), breathing going......and listening to what I had to say.......I was extra thankful for this time with him as today, March 6, is the the day 5 years ago that we met in the PICU after his accident.
What an amazing 5 years it has been.....this boy has taught all of us so much....most of all BELIEVE!!
Along with him I was blessed with an amazing hanai 'ohana -brothers, sisters, nieces and nephews (seems like hundreds at this point) and of course "gramma great" I am thankful for all of them in so many different ways.
His coming into my life opened up so much of this world to me and it is in his honor that my photography business is named "KAMAKANA IMAGES"

Today family and friends will be gathering to celebrate Kamakana's Rebirthday....something we have done every year on the anniversary of his accident to celebrate his life rather than focus on the tragedy that almost took his life.......because of my "nadir situation" this I will not be able to be there in person but am there with my heart and spirit.

So, like I said earlier my nadir showed a bit early this time....was expecting it Monday ...had the "rug pulled out from under me" Sunday.......
Every cancer patients  response/experience to their chemo is different.....there are the expected -hair loss- nausea-vomiting-diarrhea.....stuffs that seems we all far I have been LUCKY....
My "expected" side effects have been manageable and seemed to go hand in hand with my chemo infusion and for about 24 hrs after. (and YES I STILL HAVE MY EYEBROWS)......
I am going to do my best to share with you MY Post chemo round #2 some of you have called, emailed, messaged trying to get a better understanding....
For me when my nadir hit I again felt as if I had turned ancient on the inside.....some of this may have been coming down off the steroids.....the high dose steroids do give a "false feeling" of wellness.....for me they AMP me up.....lots of nervous energies.....brain racing with thoughts/hard to focus.....
Sunday I just started feeling tired and like I was trapped inside/dragging around a I listened to my body and slept the majority of the day....
Monday the fatigue was increasing and with it came the sore back, sore joints, headaches and just plain feeling like SHIT!!! Hard to describe the pain....its a pain that settles all the way into your bones, I am aware of every joint on my's the back pain that comes on like someone just hit me with a bat ( seems this is a common side effect of my chemo regimen, but at this point not one anyone can pinpoint a cause of....spoke with plenty other folks who experience(d) same thing)
I realized early on in this the importance of at least independently doing my ADL' no matter how shit I feel I get up in the morning make the bed, shower, exercise (although my sunrise walks have been stolen by mother nature this week) clean the house, make meals for the day.....amazing how the "trivial stuffs that I would never have given a second thought in the past have become major accomplishments now.
By today it's kinda all I can do to get up from the bed and move to the some of you probably seen on Facebook , I been occupying myself by going through pics and taking a fun trip down "memory lanes".....good for my spirit.
This afternoon "being tired" took on a whole new meaning for me when the simple task of changing the bed linens took me about 20 minutes and left me with labored breathing, nasty headache and room spinning.
Not sure if BOB is acting up because the Neils is "on da run" or if its just my chemo buddies going at him hard ....I am so aware of his presence in my chest and playing games with my trachea/esophagus....taking time to focus my energies on him to get my body in sync with the chemo as it is working OT right now....but still gotta keep some focus on the Neils make sure they go  and STAY GONE.....I know there were questions about what I blogged last time regarding the CT is the lymph nodes we were talking about that are shrinking/returning to normal.... 

Non-Hodgkin lymphoma, is cancer that originates in your lymphatic system, the disease-fighting network spread throughout your body. In non-Hodgkin's lymphoma, tumors develop from lymphocytes — a type of white blood cell. Lymphomas present as a solid tumor of lymphoid cells.
So what we see is my lymph nodes far as tumor response/shrinkage/ will be the Pet-Scan done following Chemo round #6 that will give us the answers on that.
I hope this helps clarify what I was relaying about the CT.....don't get me wrong...VERY REASSURING NEWS.....but there is still a lot of work to be done......and do it WE WILL!!
One of the hardest things so far with round #2 has been the mental/psychological effects.....the coming down off the steroid induce euphoria SUCKS ASS....I am not sure if I am really already experiencing "chemo brain" but I have noticed myself being a little more "forgetful" and my emotions change without warning or reason.....can be perfectly fine one minute then its full on anxiety the next, or I find myself just crying for no reason (yea I have plenty good reasons to cry and I set aside time for that) these are short little crying spurts.....other times I find myself so frustrated and angry for no reason.....I am sure a lot of this is just the process of dealing with doesn't help to be "trapped" inside because of the weather....wishing I was out doing the things I enjoy, having to avoid crowded places......for sure one of the hardest is watching Nakoa across the yard working so hard to get the new canoe "Kaau Moana" built and completed

.....this is the one I was all set to apprentice on and it FUCKING PISSES ME OFF THAT THE OPPORTUNITY WAS STOLEN FROM ME!!!
(ya ya I know there will be more opportunity.....for now let me just own being fucking pissed off).

For sure the weather has been tuff to deal with no walks on the beach, no sitting out in the sun for a little bit......afraid to even get close to the shoreline water cause of all the brown water shit floating around the island...but like everything else it'll all pass and the sun will be out again and SO WILL I.

I am so thankful to have so many folks checking in on me. I have never been much of a phone talker and theses days short conversations get me winded pretty I am so thankful for facebook, emails and all this new technology that allows me to stay in contact with everyone near and to see what everyone is up to via FB. Looking forward to the weather clearing so can spend time with some of you in person.

Big goal once I get past this nadir "hurdle" is to get out there with my camera....not sure what happened but since all this cancer crap showed on my front door I have lost my desire to photograph....not sure what it first it for sure was that the world just looked different and ugly to me.....I got passed that pretty quick (have you seen where I live??) I don't know whats blocking me but time is coming to grab the gear and get back out there......have seen a lot of different spots of most of the islands...but was having a conversation other day and realized still so much of O'ahu for me to explore.....

Alrighty time for my "pre dinner nap".....see you all soon

After the rain, things will be changed;
everything on earth seems to be new
and clean. With this  renewed scenario,
we should be:

- a more positive and courageous person
as indicated by the RED of the rainbow;

- a creative, thoughtful and joyful person
as indicated by the ORANGE of the rainbow;

- an intelligent, confident and logical person as
indicated by the YELLOW of the rainbow;

- a renewed, generous and practical person as
indicated by the GREEN of the rainbow;

- a peaceful, sincere and responsible person as
indicated by the BLUE of the rainbow;

- a relaxed, devoted and wise person as
indicated by the INDIGO of the rainbow;

and last but not least, a spiritual and idealistic
person as indicated by the VIOLET of the rainbow.