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

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