Fear......

Been home just over a week "on the rebound" from the knock down beating I experienced.....most of my time has been spent simply sleeping....listening to my body and my spirit and doing what they are asking of me...
Finally off the antibiotics....was on high dose big guns and if you've ever been on antibiotics you know the GI "upset" side effects that come along with the treatment......I haven't been able to venture too far from a bathroom, especially during the first few days of being home......wasn't "Da Puke Monster" was his cousin "Shitty McShitster"......without going into too much graphic detail ...I will leave it to your imagination as to how I managed to lose 10 lbs in one week.
Finally started to feel some energy return by Friday and was able to for the first time in over 3 weeks get out for my morning sunrise walk.....didn't get so far...but got up and out. Needless to say it felt AMAZING!! Watching the sunrise, listening to the early morning sounds, looking at the light changing, breathing in the fresh air......reminded of how blessed I am to be surrounded by so much beauty and healing energy that is abundant in Hakipu'u.......if I am going to have to go through hell, how fortunate am I to live in heaven!!
Was up and out again Saturday morning but by the end of my walk was WIPED OUT! Had some banking/grocery/errands stuff to do....and you know how I like my independence so went out and got what needed to be done ....done.....guess I "over did it" a bit, by late afternoon was exhausted and started feeling the chills.....checked and temp was up over 99. F .....so had some flash backs of two weeks ago and got a little worried. Rode it out, couldn't take anything to prevent fever....because fever is sign of infection and if the infection is still hiding out in  my system somewhere it would be good to know before Chemo on Monday.  "De-stressed" a bit, took a nap and my temp came back down and stayed down through the night and has remained down through out today.
Biggest physical changes  I been experiencing ....the numbness and tingling in my lips and tip of my tongue that I first noticed when I got sick 2 weeks back, are pretty much there all the time now.....thought is that it's a form of chemo toxicity peripheral neuropathy ....same same as what happened to my finger tips.....it should all hopefully go away a few weeks after all the chemo infusions are done.
Today is the first time I am having a real hard time walking. Not my feet like what is expected with the peripheral neuropathy but my knees...I first noticed it Friday when on my morning walk, tried take a small kine step up the sand and my knees gave out and bam I was down in a kneeling position....got up and finished my walk, didn't pay it too much mind.
This morning I got up and my left knee is barely supporting my  weight....weird feeling...took me FOREVER to walk the "96 steps" across the yard to Terry and Nakoa's ....need my "Makai fix". Terry tried get me to take a driftwood cane to walk back home.....YEAH RIGHT?!?!?!?  me with a cane....you know that pic of me hobbling through the yard would have wound up on facebook in no time flat...I'll be fighting that happening!! So just been a quiet day cruising on sofa.....a nice long vicodin induced nap....getting things ready for tomorrow. Will have to see what the doc thinks about the "knees thing".....I can't figure it out.

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So here we are "Chemo-Eve".....the night before ROUND 6....what could potentially be the last time I have chemotherapy infused into my body...... wish I could say I was "excited".....to be honest for the first time through all of this I am SCARED SHIT LESS.
This is a level of FEAR I have never known before......and I have done stuff in my life that evoked some levels of fear (rightfully so)...nothing like this.
It's how sick I got 2 weeks ago......how fast and hard that came on ......the reality that I was closer to death than I have ever been before.....I thought I had already done plenty of re-evaluating, re-defining and fine tuning since all of this started.....that was kids play compared to the thoughts, feelings, emotions, realities I have gone through in the past 2 weeks.

This is the first time that I feel physically unprepared for chemo.....my mind and spirit are kinda almost there....but it's the fatigue, pain and weakness of my body that scares me most.
We knew this could happen....it's the cumulative effects of the chemo-therapies with the added assault of the infection 2 weeks ago.....my body is just beaten down.

Folks will want to "celebrate" the day of "final chemo".......although glad to be at this point, there can be no celebrating for me.....remember the full effects of the chemo don't hit until a week after the infusion......the term "ticking time bomb" comes to mind. Then there is the few weeks of lingering fatigue that I have been told to expect to be worse than where I am at  right now.
I keep saying - for sure lets plan for the worst, asking my doc to go through all the worst case scenarios, talk about what is "expected to happen"....hoping that in true form my body will do the complete opposite of what everyone "expects" it to do.....

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FEAR: 

(noun) a distressing emotion aroused by impending danger, evil, pain, etc., whether the threat is real or imagined; the feeling or condition of being afraid.

It is not a "fear of dying".....I am pretty sure I talked about that in my last blog.....the whole "dying thing" I am at peace with....if it is time for my "ticket to be pulled" so be it......I can move on ......no way do I mean I am ready to go.....there is still plenty I plan to do here.....but ultimately none of us have any control over "ticket pulling times"

The fear for me is the fear of the pain, the fear of the potential suffering, the fear of the abuse my already weak body will have to endure......sure some of it comes from having been in this situation with patients far too many times than I would like to remember......a lot of it is "fear of the unknown" , "fear of not being in control".........fear of everyone seeing me weak.......I know your thinking "that's a silly thought" ......but if you know me, you know the LAST THING I want anyone to think of me as is WEAK and the last thing I want anyone to see is me weak.

There are decisions that need to be made, thoughts that need to be worked out, a lot to process......

if things go into shitter real far do I want to be intubated/put on  a ventilator?? What type of life saving measures do I want if it comes to that?? Who's going to be there if the shit hits the fan again?? Should I clean the house real good before going in to chemo - just in case I don't come right home?? Am I really as strong as I like to think I convince everyone else I am???

Looks like that last one is really going to be put to the test (as if it hasn't already) How "strong" am I really??? I have had the strength to make it this far.......do I have the strength to make it through.....what is real strength???
What I have to go on is the memories of the little warriors I have shared times with, the kids I have taken care of they knew real strength.
I have the stories of the cancer survivors I know, so many who have gone through so much, found the strength and courage to make it to "the other side"....the side called SURVIVOR.

Was perfect timing to have a phone conversation with one of my oldest and closest friends today, Johnny. He is someone I have always felt blessed to have in my life, someone I always looked up to and admired. He's my buddy who taught me to sail and with who I spent hours and hours sailing with on Lake Michigan back in my Chicago days....so many great memories and good times.....we were part of a group of friends that is hard to describe if you never saw us in person.....no one outside of our group will admit to it but they know there were a few years where we were the "Kings of Boys Town"!!!!

Johnny has been where I am right now ......he is a SURVIVOR! I hadn't realized until our conversation today how similar our "situations" are.....same diagnosis all the way right down to matching scars placed at biopsy sites and port placement sites.......

He has always been an inspiration to me , for years and years before I was diagnosed....and once I was diagnosed I have carried with me the thoughts of his fight, his battle, his victory and from that I have gotten plenty of strength when I needed it most.
Makes me small kine crazy that there is so much distance that separates us and that we have allowed so much time to pass with out being in the same place at the same time....but this is one of those friends that no matter how far or how long, they are always close by and when you do talk it is like you were just sitting at Starbucks yesterday talking story and sharing the crosswords.....

One conversation and so much was put into perspective....definition of friendship, unconditional love, what is truly important in life......made me realize how much stress I have been putting on myself that is not necessary.

It is the kids and the survivors I know that have paved the way for me.....and it is my turn to walk that path so that in the future I can be there to help those that will follow behind me.....

FEAR.....yeah it's got a hold on me....and I have every right to be feeling it right now.....I have every right to be feeling anything I want right now.....I will acknowledge the fear BUT  I will NOT allow it the power to take over

It is not unrealistic to acknowledge the need now to ramp up for battle......the battle is here and it is realistic to acknowledge the next few weeks things are probably going to get a whole lot worse before they get better....

I don't want and I don't need rainbows and sunshine shoved up my ass....this is the reality I have been dealt and it is a necessary process for me to face it , deal with it, battle with it so that I too will come out on the "other side" and join the ranks of "SURVIVOR"!

I do have and ARMY behind me supporting me, standing at my side and ready for get my back if needed....for that I am beyond grateful! The love, support, caring and generosity I have been shown over the last 4 months is astounding and words can not express the appreciation I have .....

I would truly be lost if not for all of the planning, physical/mental/emotional support, the talks, the notes, the phone calls, the emails, the generosity, the financial planning/advice, the meals, the checking in .......the list goes on and on......

Going to cut this one short....gotta get my "chemo-to-go bag" packed, Supah-P shirt and quilt my mom made me out and ready to go.....a good big glass of wine and some quiet time (this is me kidding myself that I am actually going to sleep tonight.....)
Tomorrow IS A BIG DAY.....and yes let's celebrate what will be the potentially final day Chemo gets put into my body......as my good friend Alan so wisely put it "FUCK BOB....ITS TIME TO MOVE ON"

A MILLION THANKS TO ALL OF YOU FOR YOUR CONTINUED CARING SUPPORT AND LOVE......IT WILL NEVER BE FORGOTTEN 

LOTS OF LOVE PEACE AND ALOHA TO YOU ALL~~P

One way to demystify something and make it less scary is to throw the curtain back and really look at it......It doesn't mean that you've given up. 

It is a gift to really look at death as a way to AWAKEN TO LIFE......

"Circling The Drain"......

At this point most of you are probably already aware of my being hospitalized this past weekend, been lots of questions about what went down....some of it's kinda "fuzzy memories" but going try give you and idea of what went down and give you a look into what can happen when someone on chemotherapy comes down with an infection.....again this is MY experience....not every cancer patient goes through the same....some never see anything like this.......some go through FAR WORSE.

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So......my last blog was about dealing with "Da Puke Monster"......sent him packing by late Thursday into Friday....then woke up Friday morning feeling a little shitty......scratchy throat, runny nose and run down.
Spent the day at home chilling....mostly sofa surfing. Watched my temperature close, it never got over 99.0F. I remember going to bed that nite feeling a little bit shittier...... took an "adult dose" of Benadryl...which being the pantie I am was too much and made me restless and tossing turning most of nite.
Woke of Saturday morning feeling like complete SHIT (or at least what I though complete SHIT felt like).....same thing runny nose, scratchy throat, small kine cough.....for sure battling some bug off...no more puking....and again watched my Temp's close ....... Temperature above 100.5F and I am supposed call doctor and head to ER......but again temps never got over 99.1F all morning.
Remember being crazy tired, so laid down on the sofa for a nap sometime late morning.........

Woke sometime after 1:00pm with a strong cough, bringing all kinds green stuff up out of my lungs, was having small kine troubles catching my breath, and my fever was 101.5
I called the Cancer Clinic and of course was told head directly to ER and the nurse would give the Oncologist on call a heads up that I was headed in.

When I was discharged from hospital back in February the nurses had told me if my fever ever went over 101.0 to make sure I brought my "overnite bag" to ER cause slim chance I wouldn't be admitted.
I called my friend Kolea, me and her work together in the PICU and lucky for me she lives right up the road....plan has always been she would be my "medical backup" person if needed.
I told her take her time coming down to get me, I needed to shower, prep the house and of course when I was first diagnosed and came home I had a pre-packed overnight /in case of emergency bag on standby for a situation like this.....yeah, um guess who went and unpacked that bag a few weeks ago with thoughts of being "superhuman" and "would never need to be admitted to hospital"

The decision to try do all of this stuff and tell Kolea to take her time was an

EPIC FAIL!!!

In the hour that went by my breathing was getting more and more labored, just couldn't get air into my lungs, couldn't stop coughing and my temperature had shot to over 103.F
Luckily Nakoa was here to keep me calm (make sure I didn't pass out) but from what Kolea told me I looked like when she arrived - I feel bad for putting Nakoa through that.
Yeah yeah ...your asking "why not just call the ambulance".......1.denial of how bad the situation was 2.high fever/hypoxia my brain was not functioning properly

3. if you've ever been to Hakipu'u you can imagine how long it would take for a ambulance to get here and then try convince them I had to go to Queens Hospital and not Castle which is closer.

Whatevah's......decision was made I got in car with Kolea and off to Queens ER we went.

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When we arrived at the ER things were getting plenty worse, I could breathe (Kolea described it as bobbing with each breath) , could barely walk and I was making no sense at all.

No need say but they obviously didn't waste any time grabbing me, bypassing triage and getting me right into the ER (sorry old Japanese dude that got booted from the room they put me in- I paid for it having to deal with the glaring and staring from your family for the next while)
Guess I was really making no sense, I told the doctor I had a Neuroblastoma.....then a little later when realized that wasn't rite I couldn't remember what kind cancer I had.....

Put on monitors, vitals done, STAT labs and blood gas drawn......
Temp still over 103, HR sustained above 120, normal to what is for me low B/P's

It was the blood work results that bumped me up to what they considered "Critial Status"
It showed I was hypoxic - meaning my blood was carrying very little oxygen through my body.

The big on was my serum  Lactate of 3.4 (text book normal Lactate is 0.5-2.2)......

Here comes the teaching..... aerobic metabolism which supplies appox 90% of the bodies energy needs requires oxygen....no oxygen and the body switches to anaerobic metabolism and  lactic acid is the byproduct of that.

A serum lactate level measures the amount of lactic acid in the blood and is an indicator of tissue hypoperfusion and hypoxia......meaning my there was not enough blood getting to my organs and through my body.

Most patients who develop lactic acidosis are considered critically ill. And along with the lab values I was showing most of the clinical signs and symptoms....altered mental status, pale, cold but diaphoretic.....hypotension, tachypnea and tachycardia.......

I know plenty folks thinking...."ewwww he shoulda went to hospital earlier in week when throwing up"....."why he always gotta try be superman".....blah blah blah

SUCK IT!!
I had not been puking for over 24 hours and my electrolytes on my lab work showed I WAS NOT DEHYDRATED....this buggah infection came on out of know where fast and hard.
So, bam IV's in both arms, at one point they were running 3 separate liter bags of IV fluids into me at same time.....Chest X-ray showed a left lower lobe pneumonia.....antibiotics started.......fluids and Tylenol into me started to feel "better".....for sure my brain stopped frying and things making more sense.....for sure was alert and oriented when the ER attending told me she was prolly going to have to admit me to "The UNIT".....I was all 'THE PICU????" so maybe wasn't totally with it.....but was like FUCK THAT I AM NOT GOING TO THE ICU.....and I guess that's when things started to sink in about how sick I really was.......

More time in ER, everything started to settle, I was more stable and all of sudden the transporters are there to "take me to my room"......I'm all "where am I going?" "WTF is going on".......ultimately was admitted to the cancer unit not the ICU.....knda woulda been nice if the ER attending gave me heads up about that so I wasn't still freaking about being a ICU patient...BIIIIAAATCH!!

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Back to the 7 Ewa unit I went.....flood of memories from being stuck there when this cancer shit storm started in January....but felt good to see familiar faces/friends - the nurses that work that unit are the Second Best in Hawai'i (sorry folks still gotta give #1 props to my PICU 'Ohana at Kapi'olani)

3 of them at my side, making sure I was ok, settling me in, seeing what I needed.....made me feel good and protected.
Not much memories of Saturday nite...I remember Kolea leaving around 9?? and that's about it.

Sunday??? a blurr.....I know my friend Laurie came by and brought me CPK.....I think I ate it....I don't remember anyone else being around and think I fell asleep on Laurie and that was pretty much all I did all day.....THANK YOU LAURIE - you have been such an amazing friend and support through all of this....you have one of the biggest , caring , giving hearts of anyone I have ever known and lucky me....you love me??? <wink><wink>

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Sunday nite was PURE HELL......was still having plenty troubles breathing, felt my body shutting down on me and then the aches and pains set in...it took every ounce of energy I had to get myself upright just so I could take a piss.

It was during the nite, quiet, alone and miserable that I came to a sense of peace that I was ready "to go" if it was truly my time.....it was not "giving up" I was "coming to peace with".....I could feel my spirit trapped inside what felt like my dying body and that is something I have never wanted ,it was as if some inner light was still on inside of me but everything around it was shutting down and it had no where to go.......... my spirit deserves better.....I called out to who ever was listening....I use the term angels or angel guides....fill in the "blank" with what ever you choose ....

I asked them to show me the way to set my spirit free.....it deserved better than this....its been a wonderful life for me full of adventure, experience, ups downs all arounds, met some amazing folks, seen some amazing places and shared experiences with others in my life that are indescribable.....I was OK with setting my spirit free from my body, free from the pain......free from "this reality"

I just had nothing left to fight with....and at that point the fighting seemed useless....not sure where my spirit would go, but it had to be better than where it was.......

No one answered.......I laid there alone in the dark, cold, barely able to move , gasping for breathing and nothing....no one.....never felt that isolated before....the tears came which then led to some sort of sleep.

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Monday was continued misery and battling to just do basic things like breath, the coughing had gotten unrelenting.....my Onco who I hadn't seen yet since this all started came in early and I could see the look in his eyes of " oh he's fucked"......Concern at this point was the Monday was technically when I would be due to start my Nadir from Chemo Round #5 a week before......concern was my counts would drop and I would get plenty sicker.....nothing to do but wait for see......
My great friend/brother and rock through the past few months, Kawika showed up at my bedside, I remember we talked, tears flowed......the comfort of him holding my hand put me enough at ease to fall to sleep....pretty sure Monday was spent just sleeping.....

Monday nite was an active nite in my hospital room....my "241 Hui" that I called out to for help the previous nite showed up.....the details of the activity I'll keep to myself, but I was being comforted at first and then pushed/prodded to let me know it was time to start fighting back and getting myself through all of this.....amazing thing was that miles away the mom of one of my "241 Hui" was dreaming of exactly what her daughter was there doing.......

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So Tuesday morning still felt like shit, but my counts weren't dropping the way they were expecting and I knew it was time to get my mind/spirit/body connection back and get to work.....my temps would climb to almost febrile state and then bam my body would step up and drive them back down....my lungs had cleared, there was no more pneumonia showing on my chest xrays, infulenza tests came back negative, sputum cultures negative, blood cultures showing no growth.

Took it easy on Tuesday - spent some time with Kawika and Malia

THANK YOU Malia for being there at the very moment I needed my own personal "Shirley Maclaine".......

I had just woken up from a sleep, sat up at side of bed...was having plenty dizzy spells moving too fast, so knew to take it slow....and bam without warning.....PUKED all over the floor....dunno what caused it,  puked for a bit got some "no puke meds" - luckily one was a big fatty dose of IV Ativan which always lands this pantie on his ass!!!

Malia was ON IT, had the staff in there cleaning up and medicating me like I was the most important person in the world~~!!

Rest of Tuesday was just a chill day, quietly working with my body to heal.

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Wednesday morning was feeling small bit like myself again , counts still had not totally "bottomed out" my body was working OT and  was able to crack some jokes with my Onco (actually at my Onco) when he came in the morning.....good sign I was "on the mend" decided to transition from IV to oral antibiotics and see if my system would handle and if so, made him repeat the words "possible discharge tomorrow"

Spent time with Kawika in the morning, actually got up and out of the room for a "lap around the unit" while he was with me.....having him at my side for sure makes me feel protected and knew he wouldn't let me push myself too far.

Got to get "outside" on the unit lanai, feel some fresh air, the wind, sun on my face....was nice.

For sure was surprised when got on scale and realized it was saying I was 12 lbs lighter then when I went to hospital on Saturday...for sure some of the weight on the admit was the 4 liters of fluid the gave me...but damn that was a big loss after maintaining my weight through past few months.

Was spent so laid down to take a nap, woke up and there was this beautiful wahine sitting next to my bedside....at first couldn't focus for see who it was.....not sure if was just still sleepy or the light coming in the window...maybe both...then focused and realized it was Kehau (1)...still not clear how long she sat there at my side and let me sleep....but for sure was a wonderful suprise to wake up to her smiling face....didn't get a whole lot of time together because I had spent most of it asleep....but was a comfort for me to have her there.
Got to spend the late afternoon with an amazing kind generous Hawaiian that truly understands and lives Aloha...was flattered and honored when he offered to come by to visit me.....
We sat and talked story for hours, he comes from an amazing family that has had so much influence on Hawaiiana and so much history....was interesting that we found so much common ground and similarities to talk of......was a huge gift to me when he pulled out his guitar and played for me.......talk about bringing tears to my eyes....am looking forward to him performing at the Benefit next week.

After his visit and our talk I was left "re-charge" had plenty to think on and was "re-affirmed" that there is still PLENTY work for me to do on this planet after I pau kicking BOB's ASS!!

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Thursday I was up by 4:00 am...practically packing my bags in anticipation of going home.....cleaned and ready to go when Doc came in....and got the "thumbs up" for go home....reality was even though I was still plenty weak and feeling shitty, I was on oral antibiotics, no more puking, feeling more like myself, and because was in my nadir - the hospital one of the dirtiest environments and unsafest places for me to be. Made promise that I would call if anything changed and for sure would have folks checking in on me at home.

Wasn't sure how was going to get home since everyone so busy with their lives and most folks at work.....luckily my good friend Bianca was still on island, her last day before heading back home and she offered to come get me and take me home.
Was perfect, I been missing her since she left Hawai'i, got to spend my b-day morning with her, but because she pregnant I couldn't be around her after got Chemo on Monday......so gave us a little bit more time together before she had to leave island.
For sure was good to have her there to keep me calm when the pharmacist informed me that two of the new meds I was sent home on would not be covered by my state health insurance/medicaid....one of which the big time antibiotic I have to be on that there is no "cheaper" generic sub for......not sure how it went down, but somehow I managed to leave there with 7 out of the 10 pills I need...will deal with getting the other 3 on Monday when go in for my follow up appt.

Felt wonderful to be home, see my cats who were very well taken care of by Terry and Nakoa while I was gone.....for sure they missed me...haven't left my side since I got home.
You never appreciate taking a shower in your own home until you spend a few days in hospital...

Got a small kine scare when after my shower I was dressed looked at myself in the mirror and realized there was fluid collecting on my t-shirt at my port site.....freaked me out......closer look and realized my skin has become pretty paper thin and the removal of the dressing they had over my port while it was accessed, left my skin raw and blistered and one of the blisters had popped and was leaking.....NOT my port thankfully............
Popped my pain pills, big fatty slug of my cough syrup and climbed into the comfort of my own bed for the longest sleep I've seen in the last week.

Usually the cats, Kolohe especially is on me at 0500 to wake up start my day (ie:feed them and let them out) and this morning they were nice enough to stay cuddled up with me and we all slept past 0700.....unheard of in this house!!
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Woke up today feeling like what I think a 80 yr old feels like, took a while to roll out of bed, slow moving, but steady on my feet. TIRED TIRED TIRED.......headache wont pass and plenty of body aches and pains, which unfortunately has me back on a bunch of the pills I had gotten myself off of...the cycle of taking one pill to relieve one thing but then having to take another to counter the effects of the first, then a third because the second works to well....blah blah blah.....I do have to write down everything I take as soon as I take it....chemo brain leaves me wondering 5 minutes later if I took anything at all....recipe for some trouble!
Got some work done for the benefit, chose the photos of mine I am going to have put on canvas for the silent auction, then it was nap #1 time....was up from that for and hour or so before Nap#2 came on.
Physical activities today....walking to the mailbox......driving garbage cans up the driveway for pick up tomorrow and an evening walk out front to lounge chairs to watch the beautiful things that happen in Hakipu'u when the sun starts to set on the other side of the mountains.

Nap #3 ...then this blog........

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So....there ya have it....my experience of the past few days......thank you all for your calls, letters, texts, facebook posts ...everything you did to remind me I do for reals have AN ARMY BEHIND ME!!!

The prayers, good vibes, wishes and all were put to good use....I'm still plenty weak, battling with the cough, the fatigue  headaches and body aches..are pretty much to be expected after the cumulative effects of 5 rounds of chemo and the "beat down" my body took over the past few days...but I am feeling more and more myself......I am fighting hard as I can.

And am so thankful to all of your for all of your caring, love and support.....once again I am blown away and looking forward to when all of this shit is behind me and I can begin PAYING FORWARD the generosity, support and lessons I have learned these past few months.

LOTS OF PEACE LOVE AND ALOHA TO YOU ALL

P

“It scares me how hard it is to remember life before you. I can't even make the comparisons anymore, because my memories of that time have all the depth of a photograph. It seems foolish to play games of better and worse. It's simply a matter of is and is no longer.”
― David Levithan



The good, the bad and the ugly.....

So here's MY reality with chemotherapy.....It DOES get HARDER with each cycle....at least for me this is the case.
This is not always the case for everyone....but the thing about chemotherapy is while highly effective at killing cancer cells it can also damage rapidly dividing healthy cells through out the body. The potential toxic cumulative side effects are numerous....there's the whole risk for infection when counts drop, the risks of bleeding, the fatigue, the chemo brain, the potential risk for damage to other organs of the body.....and of course one of my all time favorites the risk of one of the chemo's I am on to cure my lymphoma can actually cause Leukemia.
Those are the facts.....and the cumulative effects of my treatment are beating my ass!!

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Had a nice quiet/reflective birthday and b-day weekend. Got to get in a good hike on Sunday with some friends - needed to be out and distracted as it was "Pre-chemo Sunday".....I had spent the majority of the previous week moving a lot slower and needing a lot more rest....I think in my previous blog I tried to blame it on a "bug" I thought I picked up .....looking back I think it was just my body telling me to "get ready" ......the fight was really coming my way.
Sunday nite was the first time since all of this started I actually slept through the nite before chemo.....I am sure a lot of it had to do with the physical tiredness of hiking all day......but there was also a comfort to my sleep that nite....I would later find out why....THANK YOU KATE!!
So went in Monday morning for my "pre -chemo" work up , labs looked good....I must have looked tired/fatigued.....talked with the onco and he explained how it wasn't uncommon for me to be feeling this way at this point, especially on the chemo regimen I am on. He said he wouldn't be surprised if it actually got worse between now and round 6 and that I could probably expect the fatigue to linger for weeks following round #6........not the first time I asked myself why am I putting myself through this, why am I doing this to my body....and sure it wouldn't be the last.

Last 2 rounds had some troubles with nausea and then vomiting during the infusion of one of the chemo's ......of course the one everyone says "shouldn't make me nauseated or cause me to throw up".......so staying true to my history my body does exactly what "the experts" say it won't do.
We did add a strong anti-emetic pre-med to my treatment plan, this one seems to be the one most have had the best luck with. So I was for sure happy to get it....
Chemo started infusing around 10 am.....I was knocked out!! Luckily because of my previous history of puking during chemo I was able to talk them into a double dose of Benadryl.....and thought okie..."I'll just sleep through all of this, wont even know if I get nauseous.....
BIG FAIL!!!! Woke by noon and the puking came on and came on strong.....puked for a few hours, got it under control just like round 4 and thought "phew....got through that"......
Was I WRONG!!! By 8:00 pm was home and "Da Puke Monster" showed up at my house, no warning, no polite knocking......not even a "I'll huff and I'll puff and I'll blow your house down".....nope was full on puking......
As Monday led to Tuesday I was not able to keep anything solid in my system and was even having troubles with liquids....luckily I know what needs to be done to keep myself hydrated and when talked to the docs office agreed on a plan and agreed that if things got "worse" I would head to the hospital (yeah right like I am going to go sit in the F'ing ER for 6 hours waiting for IV fluids ....NOT~~")

Lucky for me I have been getting spoiled by Aileen and Gramma Great with the best possible way to fight of dehydration.....

THE BEST COCONUT WATER ON THE MARKET..... I am a big fan of my coconut water fresh right from the coconut....if you can't get that this in my opinion is the next best thing !!!
When keeping this down got really rough I wound up freezing it and just sucking on the ice cubes to stay hydrated.

Wednesday had to be back at the office for my Neulasta shot, of course they wanted to "hook me up" and give me fluids.....got myself out of it.....swore again I would watch my PO intake and make sure I was making pee every 2 hours....they like to hear shit like that.....c'mon pee every 2 hours SERIOUSLY?!?!?! ha ha ha!!
Was a good thing I declined the "hook-up" as Wednesday was soon going to be one most challenging days yet.......was a long day spent at the hospital with a friend.....

Thursday morning was shocked when woke feeling even worse.....managed to keep my tea down and my morning pills.....but was beyond exhausted..... again finding all sorts of excuses for being tired ......other than just owning up to the facts.....my body is FUCKING TIRED......

"Da Puke Monster" was nice enough to move on by Thursday evening and fluids were going down and staying down ....woot woot !!
EXCEPT for the esophagitis that was caused by all of my vomiting.....basically the lining of my throat is torn up.... By this morning just swallowing my own spit was like swallowing razor blades...MANY MANY THANKS to my Great friend Gerelyn for coming through with the recipe to her " mucocitis cocktail" I was able to take semi-solids down today.

Still popping the anti-emetics around the clock.....just like ensure one more day of no puking before risking coming down off of them.
All this BEFORE my damn counts drop next week......I am sooo FUCKING OVER IT~~

Folks keep commenting  on "woo hoo" "congrats" your almost "finished"......almost finished with what???? The Chemo - yes I am almost finished with round #6 of my chemo.....then there is the few weeks of letting that round wreak its havoc/do its work ....then its the waiting game before the next Petscan to let us know how the cancer actually responded to the chemo.....just because round 6 goes in DOESN'T mean the cancer moves out......then after the Petscan and we can determine what cancer is left and where it is on to radiation treatments......and to be very honest at this point I am having serious second thoughts about putting my body through that.....will deal with that when we have the results of the Petscan and what the "recommendations" are....SORRY If I can't be getting more excited and celebratory with everyone about making it to round 6....
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So that's where I am at "dodged" the admit to hospital for fluids "bullet"..adapting to yet more changes .....FRUSTRATED, TIRED, ANGRY, AFRAID.........THANKFUL to all of you for your continued caring love and support.
The "ChipIn" site came to its 3 month expiration.....bat shit crazy to realize it's been 3 months of this already.....THANK YOU THANK YOU THANK YOU so very much for your generosity....I will forever be blown away and so grateful to everyone who stepped up to help me when I needed it most!!
I am in the process of getting in touch with each of you to acknowledge and thank you personally, it;s just taking more time than I imagined, but I know your out there and I will get to you!!
It's difficult that "THANK YOU" is all I can give right now....know the words carry a ton of weight with me......what I can promise is that once all of this is behind me the generosity, the love , the caring, the enormous hearts and support WILL BE PAYED FORWARD you have all inspired in me ways to make this a better place for others more than you can imagine, and it will be my pleasure to get to work on it in honor of all of you and the lessons of life, love and karma you have blessed me with.

_____________________________________________________
Moving forward....realize it's been over a week since I took my sunrise walk and no matter what, no matter how tired...tomorrow I WILL GET UP AND DO IT.
Disappointed that I won't make it to Maui for the OluKai Ho'olaule'a this year....
was looking forward to another round in the helicopter...

More so going to miss the laughs and antics with my OPTV 'Ohana and seeing friends....

Just things have gotten to where I need to be "responsible" and can't be going and tryin to do this stuff and just turn out to be "dead weight" ( no pun intended) and needing folks to worry or care for me............

I do  have the planning of the Fundraiser/Benefit to look forward to ...which is fast becoming a big job for everyone involved!!!...goal tomorrow is to make final cuts on the photography I will be putting into the silent auction....hard to pick.....and this will really be the first time my work is on "display" for  a group of this size.......Stoked to be getting calls everyday with more and more donors to the silent auction.
Will be a good time and will be good to see a lot of folks I haven't seen in a while. Well that's it folks, wind is outta my sail for now....just wanted to get you all a quickie update and hopefully answer some of your questions and concerns about this past week.

LOTS OF PEACE LOVE AND ALOHA TO YOU ALL!!

“Well I got to keep it going keep it going full steam/ Too sweet to be sour too nice to be mean/ On the tough guy style I'm not too keen/ To try to change the world I will plot and scheme.”
R.I.P.  MCA

The Birthday Blog....

"Another year older"......Thankful to have made it another year older.....crazy when I look back this past year of my life was for sure the BIGGEST LIFE CHANGER.
Just when I thought "everything was on track" and I had finally "come into my own".......I had actually just began to grasp onto the future of me as things were all coming together and the "stars were aligning".....and then as soon as I seemingly had it in my grasp it was all torn away from me.....

CANCER.....

yup 43 years old... in the "prime of my life"....."living life to its fullest"....trying "not to take anything for granted"........or so I thought....

January 25, 2011......"YOU HAVE CANCER".....

EVERYTHING changed....my life was being threatened, my independence was stolen from me, the "reality" I knew, would be no more....

CANCER......

How? Why? When? Why?Why? Why?

"It couldn't be happening to me"......" I am the one who takes care of everyone else"......"I have gone through so much to get to where I am, to be who I was, to be living the life I was blessed with"....

CANCER.....

Last week of January into the first week of February a blurr....doctors, catscans, needles, surgeries, pain, disbelief, anger, FEAR, unknowns, diagnosis, re-diagnosis......

A new reality....darkness....death....dying....FEAR....

A shining light in the darkness....FAMILY, FRIENDS.....LOVE, CARING, SUPPORT.....

Immediate support at my side, phone calls, emails, cards......from all over the world in no time...

A bright light....showing me in spite of the darkness that had enveloped me there would be lessons learned in this new reality.......

A realization of how BLESSED I am and how wonderful and amazing my life had been.
When I sat for the week knowing I had cancer....but everyone unable to tell me what kind it was stalling treatments....tests tests more tests......
I was force to take a good look at my past 43 years and realized how truly amazing they had been. The things I had seen and experienced, the places I had travelled to , the jobs I had worked, the friends and family I met along the way.......BLESSED
I had gotten to a true sense of peace of letting go of this "reality" this "life" this "world......peace at the prospect of moving on...
Realizing that if in fact it were my time to "go" , I could go will the knowledge that I had made and impact in this world, had positive influence on others lives, a knowledge that was becoming so clear to me that in some ways I was leaving this world just a little bit better than it was when I arrived.....at least for some.

It wasn't giving up, or giving in.....it was facing the potential reality and for the first time in my life truly knowing a sense of PEACE in myself.

Diagnosis comes.....new reality.....I have been given a fighting chance....

Life was not over, there was a whole lot more for me to do......a whole lot more lessons for me to learn.....chances to meet new people that would impact me and that I could impact on.

A chance to now move from a place of PEACE to having to truly find out how strong I am...

Some have said "courageous"

COURAGE

 the quality of mind or spirit that enables a person to face difficulty, danger, pain, etc., without fear; bravery.

Nothing courageous about this  the levels of FEAR  are debilitating at times.

STRENGTH

 the quality or state of being strong; bodily or muscular power

Physically my body would show me a strength I never new it had, mentally my mind would show me a strength I never new I had, spiritually.......an OVERHAUL!!

FEAR

a distressing emotion aroused by impending danger, evil, pain, etc., whether the threat is real or imagined; the feeling or condition of being afraid.

Levels of fear I have never known before......

SURVIVOR

 a person who continues to function or prosper in spite of opposition, hardship, or setbacks.

I WILL BE A SURVIVOR and despite all my fears I will find the courage and the strength to beat this....

CANCER

An immediate lesson I learned was about

GENEROSITY

readiness or liberality in giving, freedom from meanness or smallness of mind or character

I have come to know a level of generosity from family friends and strangers that has humbled me....

The outpouring of love caring and support from so many different folks, from so many different places, from so many different times in my life.
Levels of LOVE AND FRIENDSHIP I wasn't aware of....I know I have said it before but for real , at times like being at my own memorial service.
The memories shared, the stories of the effects I had on other peoples lives......
The good the bad the ugly.......all laid out there.....no smoke machines, no mirrors, no holding back

Truth......HONESTY

else I have been doing to battle this, is working.......then its on to Radiation Therapy....

The generosity I have been shown financially has floored me.
The rate and level that folks have stepped up to in order to help me has been a life changer ....the levels of stress alleviated by your generous donations is hard to describe.
Knowing that for the present time I can maintain some of my independence, I can stay in my home, I can focus on healing......I can on a daily basis be blown away by generosity of others.
The ChipIn account that was started expires tomorrow......I vaguely recall the discussion of what the "goal" should be.......what the potential reality of donors would be......my mind was somewhere else when these discussions were had.......All I was hearing at the time was CANCER...

Now 3 months after it started and it hit 80% to the goal.....
SPEECHLESS.....(yes ME...speechless)
At this time all I can say is "THANK YOU"......hardly seems enough....but that's what I have.

I also have the chance now to be a WARRIOR, fight this with strength, pride and dignity.

Then once I am given the title of SURVIVOR, I will go on spending the rest of my days

PAYING FORWARD your generosities.

The medical bills are there and will be there.....was funny having a conversation the other day and realizing how absurd it is that I will have to go to war to fight this thing, survive it, just so I can spend the rest of my life working to make the money necessary to pay off what it took in order to save me.... ODD huh?!?!

But in surviving this and moving on in my life I will be given the chance to show the world that infact we are surrounded by goodness, kindness, compassion......NOT THE CRAP they bombard us with in the media......there are good people out there!!!You have all taught me that.
I will also go on to be a testament that "Karma is NOT a bitch" .....I think my story speaks volumes about what you put out there will someday come back to you .......

So now I am on to the next year in my life......surrounded by blessings........"lucky"??? not such a huge fan of that word......"lucky" in the sense that it can be as bad as the last year was.....you can only be given your first cancer diagnosis once!! right?

This, the next year of my life, starts off with still 2 more rounds of chemo to go.....then the looming Petscan that will hopefully answer some questions and show that the chemotherapy and everything Feeling "lucky"......mmmmmm......not so much

Feeling "blessed" YES, blessed to be surrounded by and supported by family and friends, blessed to be having all this new learning experiences and opportunities to view life in a different way.
BLESSED......that I actually LIKE THE PERSON I am becoming.
So yes looking forward to the coming year, its for sure going to be a challenge.....but look at what is in store for me once I meet and take on each of those challenges....just imaging what I will be blogging about a year from now!!!

Thank you all so much for all the Birthday wishes and love that I was showered with!!!

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So.....this Monday is Chemo #5.....am I ready for it??? I guess ready as I will ever be....

Was  some suckage following round #4 in that usually once I get past the 2 weeks after infusion I usually have one week of feeling strong before the next infusion.....not the case this time>
This past week I have been completely exhausted....thought I was battling a bit of a bug early in the week, but realizing by weeks end...I just never got my "mojo" back on this past week.

It has been a week of pretty much sleep, wake, sleep, wake.....
The peripheral neuropathy is still there....the hands are unchanged and now its the muscle cramping, charley horse feeling to my calves and feet....not sure why but this likes to sneak up on me in my sleep...the other night I am pretty sure I levitated right into a rigid standing position in my sleep.

I can feel the changes to my body, some good I think in relation to the change in my eating habits ....I am becoming a MASTER JUICER!!
Some of the changes, due to the chemo ....not so good....but "they" say the fatigue, the pain, the this , the that, is all part of it.....blessed that I had the 4 good runs......only 2 more to go.

Mentally my bodies "inabilities" are starting to take a toll....but again it goes back to having to find that mind/body/spirit connection and keep forward momentum.

Today just plain sucked and left me angry and sad....today was my niece Lucie's Bat Mitzvah....she is in Phoenix so the risk of being on a plane right now plus trying to get back in time and be well rested and ready for Chemo Monday prevented me from going....this morning I got up and regretted not being there....another once in a life time opportunity that this FUCKING CANCER HAS STOLEN FROM ME!!It's a reminder that I need to keep planning things to look forward to, maybe make some small modifications to my "pillow list".

So tomorrow "Chemo Eve" I'm going to head out with a buddy of mine to do a hike somewhere on island I have never hiked before....
Spend the day outside, breathing, feeling, seeing , experiencing....LIVING....
Then be ready for round #5......

After that I have the planning and work to do that I can to help out with the Fundraiser/Benefit my friends have put together for me at the end of May.
Little known secret I'll share......the benefit will be the night after what will hopefully be my last ever chemotherapy infusion!!!! There's something to celebrate ...huh?!?!

Will be a great night, have plenty of live performers to entertain, plenty fun things for kids to do and a huge silent auction.....which will be in a lot of ways the first time I have ever really put my photography out there to the public....

It was important to me to do what I could to make most of the silent auction pieces my photography, not sure if it makes sense, but it will be one way I can "repay" folks for their generosity....does that make sense??? They can leave the fundraiser that's being thrown on my behalf with a part of me....
And hell if I die you know what those photos going to be worth then!!!

ha ha ha ha ( I know ...I just put a dollar in the "douche jar")

So that's about it for now...thought I would have more insightful, "heavy shit" to lay down for you....but my brain just plain hurts....

THANK YOU ALL AGAIN FOR ALL THE BIRTHDAY WISHES AND LOVE .....

I LOVE and MISS so many of you that are not close by....but have loved the reminiscing we have done the last few weeks/days and so looking forward to seeing everyone again sometime soon....(on my world wide "post cancer" book signing tour???)

LOTS OF LOVE AND ALOHA TO YOU ALL

“Every day, think as you wake up, today I am fortunate to be alive, I have a precious human life, I am not going to waste it. I am going to use all my energies to develop myself, to expand my heart out to others; to achieve enlightenment for the benefit of all beings. I am going to have kind thoughts towards others, I am not going to get angry or think badly about others. I am going to benefit others as much as I can.”
― Dalai Lama XIV

"Chemo Brain".....

CHEMO BRAIN

For years cancer survivors have worried about, joked about, and been frustrated with the mental cloudiness they sometimes notice before, during, and after chemotherapy. Even though its exact cause isn’t always known, this mental fog is commonly called “chemo brain.” Patients have been aware of chemo brain for some time, but only recently have studies been done that could start to explain it.
Doctors have known for years that radiation treatment to the brain could cause problems with thinking and memory. Recently, they have found that chemo is linked to some of the same kinds of problems. Research has begun to show that some cancer drugs can cause certain kinds of changes in the brain. But it’s also showing that chemo is not the only thing that can cause problems with thinking and memory for people with cancer.
Though the brain usually recovers over time, the sometimes vague yet distressing mental changes cancer patients notice are real, not imagined. They might last a short time, or they might go on for years. These changes can make people unable to go back to their school, work, or social activities, or make it so that it takes a lot of mental effort to do so. They affect everyday life for many people, and more research is needed to help prevent and cope with them.
Here are just a few examples of what patients call chemo brain:

• Forgetting things that they usually have no trouble recalling (memory lapses)
• Trouble concentrating (they can’t focus on what they’re doing, have a short attention span, may “space out”)
• Trouble remembering details like names, dates, and sometimes larger events
• Trouble multi-tasking, like answering the phone while cooking, without losing track of one task (they are less able to do more than one thing at a time)
• Taking longer to finish things (disorganized, slower thinking and processing)
• Trouble remembering common words (unable to find the right words to finish a sentence)

Doctors and researchers call chemo brain “mild cognitive impairment.” Most define it as being unable to remember certain things and having trouble finishing tasks or learning new skills. But some doctors call it chemo brain only if it doesn’t go away or get better over time. How long it lasts is a major factor in how much it affects a person’s life.
For most people, chemo brain effects happen quickly and only last a short time. Others have long-term mental changes. Usually the changes that patients notice are very subtle, and others around them may not even notice any changes at all. Still, the people who are having problems are well aware of the differences in their thinking. Many people do not tell their cancer care team about this problem until it affects their everyday life.
For someone who has lost some brain function, even short-term problems with thinking and memory can be scary. Some people may have trouble remembering simple things, like closing doors or turning off lights. Others may notice that their brain doesn’t work as quickly as it used to. These kinds of brain problems can cause trouble at work and at home. People who notice problems with their thinking may feel even more upset if their doctors blame it on aging or act like it’s nothing to worry about. It is distressing to wonder if you’ll ever be able to do your job again, or if you will get lost on the way to a place you’ve been to dozens of times.

Mahalo to the American Cancer Society for the above information....

I also just now learned per

http://en.wikipedia.org/wiki/Post-chemotherapy_cognitive_impairment

It's called PCCI.....

So, yeah......cancer brain.....it's REAL folks.....not all of "us" get it, not all of "us" acknowledge it...

I unfortunately am experiencing it and am very aware of it's "presence".....sure it's good fun at times and I for sure have joked about it...

My experience, so far, is for sure having periods where it is difficult to remained focus. I have found myself rite in the middle of a conversation and BAM....I completely forget what the conversation was about....I know we were talking, but all of a sudden I am clueless as to what we were talking about.

I can remained focused and involved in a conversation but then shortly after its over I completely forget what was said....I usually know what we were talking about, but then forget the details. I now, if having  a "important" talk, write everything down as we go......like make bullet points during the talk, so afterwards I can remember what I am supposed to do, where to be, when to be etc etc......

This I think is getting a little frustrating for folks when I have to ask them three or four times the information they gave me during a conversation a few days ago.

For sure it is only the short term memory that seems to be affected ......my long term memories are PERFECT and have loved the reminiscing I been doing lately with friends and family....so many great memories.

For me, chemo brain has made it for sure difficult to "multi-task"....If I am doing something, I have to focus on that one thing....most times if I walk away or shift my focus I forget the one thing I was doing and start something completely different.

There have been times when I come to a realization that I have 4-5 different things started and going at the same time, none completed.

Best way to describe it....would be like if I got up and walked away from laptop rite now like to go toilet or something like that, in a little while I'll be in the other room folding laundry, then later I'll come in the office see the laptop on , middle of blogging rite there and then I will remember I was on the laptop before going to bathroom.....it's like the amount of time it took in the bathroom the thought of being on the laptop just a minute or two before is just gone...and I come out of the bathroom with a clean slate....there's no standing around scratching my head wonder what it was I was doing......I just come out and go about doing my "stuff"not realizing there was a task I was doing before going in bathroom.

Does that make sense????

This has gotten to be a big challenge for some reason with my using the stove............there's been a few times when I have started cooking or heating the tea pot and walk away, get distracted and completely forget the stove is on.....luckily I can usually here the soups bubble over or smell food burning.....had a issue with my tea pot, didn't realize the whistler wasn't working.....put tea pot on stove set at high, forgot it was on....all the water evaporated and there it was a metal tea pot empty getting HOT sitting on the stove burner set at high. Luckily I went to do something at the sink and felt the heat coming off of it, turned the stove off and when it cooled off threw that teapot in the rubbish...mahalos for the new tea pot Laurie!!

Recently it was turning the stove on to heat up the teapot (I drink A LOT  of tea these days) never realizing I turned the wrong burner on, cause was doing something else at same time...went into the office, no worries cause the whistle going to blow when ready....the I hear a SMASH

The burner I turned on was the one that the "drip dish" was sitting on.......thing got HOT nuff to shatter the dish

YES I have agreed that now when the stove is on I am focused on what I am cooking, conscious to stay right near it and FOCUS!

Sure it gets frustrating.....like getting "everything ready to go"......which means when I leave the house, have to remember to have the to-go hand sanitizer, wallet, phone, long pants, long sleeve shirt, sweat shirt and beanie...if not already wearing it have to have it for backup, never know when going to get chilly and back up drinking water/coconut waters/tea..... and its not until I am in the car leaving or already on the road before realize I left something or all of it home....

I have tried to have a to-go bag ready but when I do remember to bring it, I get home put it somewhere to refill what I used...forget to then its just a empty bag that gets unpacked later or put away....and I tell myself to triple check that I have everything I need, but usually space it out somewhere between reminders 2 and 3.

I am aware of this all and am very conscious of it when I am driving....now a days I sometimes don't even turn the radio on just to make sure I stay focus......

Hard to describe, its not like I drive somewhere "snap out of it" in a parking lot all "how the fuck did I get here".....you know like Hollywood style....its more going past where I was meant to go, being in the wrong lane stuff......there was a little incident of a "space out" while turning and the wheels of jeep wound up on curb when I think I spaced out........YES YES, I have sworn to if there is another incident like that I WILL let someone know and "turn in my keys"........

I can sit and watch a movie no problem....but if pick up the phone to check emails or fb or something....a whole lotta time can go by that I forget the movie is on.....plenty rewinding if not focused.

This blog is in NO WAY meant to be a "pity party".....my reason for blogging this is not because I need anyone feeling bad for me....it's because this stuff needs to be out there and talked about....I knew nothing about it, no one "warned" me about it when they went through the list of possible chemo side effects.......Approximately 20–30% of people who undergo chemotherapy experience some level of post-chemotherapy cognitive impairment and no one warns you about it???

WTF

I luckily am aware of it and am "adapting" things as necessary......NO I don't need post-it notes saying "fork" "spoon" "toothbrush"........again stop with that Hollywood image you just had in your head!!!!

I just need to periodically remind myself to focus, make myself aware of being distracted/called away from a task.......stop, breathe, focus....not get frustrated......realize that in my case my "chemo brain" does get worse when I get myself tired/run down....

Just like everything else .....I am learning to adapt

Just like everything else.....praying that this is all gone soon!!!



So again thanks for sticking by me as I navigate this new reality of mine, thank you for all of your kind words and support about this blog thing.....

LOTS OF LOVE ALOHA AND PEACE TO YOU ALL!!!



thought it was interesting and not sure if you can see it.....but that "blue dot" that looks like some kind of jewelry or something at my sternal notch....is some sort of blue light....a "reflection" of something ....a weird photo lighting thing......what is WEIRD  to me is this is the exact spot where the swelling started back in January that was my sign from my body something was wrong....and it was the swelling going on right at that spot that eventually got my ass to the emergency room and.....well...the rest you pretty much know by now....

just thought this was interesting and worth sharing....

P



Blessings around every bend......

Aloha Kakou!

Lets get the "boring stuff" out of the way first....

Medical Update: feeling like SHIT at the one week after round #4...nothing I can't handle and will push through it one foot infront of the other.
Despite cutting the Vincristine dose in half at round #4 the peripheral neuropathy is getting little worse. It has spread from not just my fingers but now my entire hands......feels now like I have icy fingers and really TIGHT gloves on......am dealing by "training myself" to use my eyes when using my fingers and making sure I grip things with my hands not just fingers....biggest lesson was making sure I double check after I do up my button fly jeans!!!!

Started to feel small kine tingle/neuropathy on tip of my tongue and lips.....so guess a conversation with the Onco is in order....and I'll continue to do what I need to do for ho'oma'a the physical changes.

Pain following the last Neulasta shot started the night after getting it and only lasted about 24 hours.....when the pain woke me in the middle of nite all I could think of is the scene from X-Men when Wolverine gets the metal injected into his bones.......that is what it felt like......but luckily short lived.

Appetite is still good, haven't lost any more weight.....been juicing like a mad scientist....

amazing how "good" my body feels drinking these concoctions.....some have tasted far better than others......with the "budget" have for food if a batch come out tasting nasty or smelling foul...still gotta DOWN IT~! No wasting good food!!

And now instead of my "daily Jägermeister shot" its become a daily shot of juice olena/olive oil/black pepper......times are a changing......

One of my all time favorites is the homemade soups I keep getting that go into the freezer and are the perfect meals at the end of the day when I'm full on tapped out and got no energies for make anything...out of the freezer, into the pot and BAM a nutritious meal FULL OF LOVE!!

(Mahalo Malia for my latest batch...the matzo balls are like the prizes in a Cracker Jacks box!!)

So that's it with the medical/physical update stuffs.......YAWN!!! RIGHT????

Financial stuffs: I am still blown away by the outpouring of generosity from folks all around our planet......again I am humbled and left with nothing but a HUGE MAHALO~~!!
(I am still working on getting a thank you out to each of you.....if you haven't gotten on ITS ON ITS WAY....just know how much I appreciate all of it)

I got my approval for SNAP (supplemental nutrition assistance program)......our states name for foodstamps......I am the lucky recipient of $285.00 a month (was $300 but already get cut backs before even receive it) so basically the state says I should be able to survive on $71.25/week for food.........HAVE YOU SEEN ME EAT??????

Whatevah's~~!!! Just thankful to receive anything at this point....wish I could spend it at the farmers market for the good/inexpensive stuffs......but that would make too much sense, yeah?

The $$ comes on a card that looks like a credit/debit card.....crazy bat shit thing is I still have not been able to use mine.....I am having a super hard time overcoming the "stigma" attached to being on food stamps.....I know the support is supposed to be there for folks in need.....I guess its just so many years of watching folks that know how to "milk the system" use the support as a way of life.....somewhere in me I am feeling shame for having to use it......

I gotta get over that fast though....the ice box is emptying fast.

Tried all "avenues" with my SSDI application.....but the "standard" process is to have to wait 3-6 months before the application is reviewed and the feds decide whether or not I qualify as "disabled"......FUCK I'll be pau treatments and back to work before they even take a look at my shit!!

Again WHATEVAH'S~~~!!!!

Also found out that the Medquest (state healthcare) is NOT the coverage I should be on.....I should have been applied for and put on something called Medquest QeXA.....it's what your apparently supposed to be on if "disabled" and my inability to work for the year I am in treatment deems me "disabled"....it covers more and there is more state financial support that comes with it......so  the "drowning in paperwork" starts all over again.....

Thanks to Kehau (1) for the title of one of my upcoming books

"IF THE CANCER DON'T KILL YOU......THE PAPERWORK WILL"

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Okie nuff with the boring shit....let's get to this past weekend!
Saturday was the annual Kualoa/Hakipu'u Canoe Festival.....we were so blessed to have Hōkūle'a back in the place of her birth after she spent so much time in dry dock getting her necessary and well deserved "tune up"....

It was at the canoe festival that the newest canoe Ka'aumoana received her blessing...

The blessing of Ka'aumoana had different meanings for different folks and those meanings can not be put to words.......each of us will carry our own meanings with us....I'll let the photos do the "talking" now....

My favorite photo of the day....'Ohana on Ka'aumoana....Nakoa who built her, steering and holding Makai, the future of Hawaiian Sailing Canoe. His wife and my bestie Terry. Nakoa's mom, Kaau's mom and the all the rest of us blessed to be part of this 'ohana and have the chance to share this special moment together.......

(mahalo Stephanie for the pic)

end of the day......riding my future home.....

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Sooooo if that wasn't enuff excitement (and exhaustion) for one weekend......my blessings didn't end there.......thanks to my good friend Jennifer I was blessed with a ticket to be in the audience to hear/see his holiness the Dalai Lama speak......

Jen I don't know how to begin to thank you!!!

How's my "lucky fakah" seat!!!!

How to even put this life experience into words......I worked hard to make sure my "chemo-brain" took in every moment, every word, every emotion.....

His holiness was here to speak on Public Talk, "Advancing Peace through the Power of Aloha."

Was interesting when His Holiness said "that prior to being explained the deeper meaning of Aloha he did not have much understanding of the concept. He said although the term appeared simple the challenge was in implementing the real meaning of the concept."

This completely struck home to my core as this is something I strive to accomplish in my life.....implementing the real meaning and spirit of the Hawaiian concept of ALOHA in my daily life.......

As His Holiness shared his thoughts on "world peace must come through inner peace",  it completely hit me again in my core as he  added "that at the individual level, a healthy body was very much linked to a healthy mind." His Holiness recalled a meeting with an American scientist a few years in Stockholm, Sweden who told him that when we develop anger, the object of anger appears very negative. The scientist had added that actually, 90 percent of that negativeness is mental projection. His Holiness said "that Buddhism also talked about a similar state".

His Holiness said  "people should try to develop proper mental attitude through training of the mind. And any decision under strong emotion often becomes wrong as much emotion is actually biased."

His Holiness continued his talk about peace saying "the real basis of inner peace was warm-heartedness. Once we develop warm-heartedness, that kind of attitude, automatically develops respect. He said "fear brings about distrust and that love and compassion help dispel distrust.  Once anxiety is reduced and distrust reduced, one develops more compassionate feeling toward others."

He said "love, compassion, affection are at two levels. One level is biological and is biased. That type of compassion could be taken as the seed and then utilizing human intelligence, using our common sense, and most important, through scientific findings, one can work on inner peace. That is realistic compassion and is unbiased, and also brings good health. This can begin at the family level and then at the level of the community."

I was blown away as he acknowledge "despite claiming to be believers of a certain faith/religion, many people essentially are non-believers, and  therefore we need a universal way to approach this universal value of peace. If we rely on a particular religious faith, it will never be universal".

I have waited my WHOLE LIFE to hear some "leader" acknowledge that we are all given the right to our own belief systems but it is UNREALISTIC to think that if we do not let go and all come together as human beings putting aside the "right and wrong" beliefs that come with religions.....then true PEACE will never be found on this planet.....

There was so much more he spoke on in what seemed a very very brief time.....and struck me personally on so many levels.....still processing it all and really working to weave it into the frame work that makes "me".

One thing I found interesting is that His Holiness is actually a TRUE KOLOHE!!!! Giggling at times.....cracking jokes.....and best of all when asked by an audience question about how in photos and in public His Holiness is always smiling....is he always smiling like this behind the scenes and "could anyone truly be so happy".....apparently His Holiness found the question as ridiculous as I did, as his response was to talk about smiling while sitting on the toilet taking a SHIT!!!!

No he didn't use the word "SHIT" but he was full on talking about taking a dump with a smile on his face.....never in a million years would I think the Dalai Lama would have me full on belly laughing like I was at a comedy show!!!

It was truly a life changing experience to be in that audience and I will forever be thankful and grateful to the folks that made it happen for me...

On Monday the Dalai Lama was in Hakipu'u to bless Hōkūle'a......unfortunetly my "the name that will not be spoken" (after watching the entire Harry Potter movies start to finish I decided my Nadir is Voldemort) showed up and "pulled the rug out from under me".....so I was not able to witness the event....from what I heard about the security around it I would have prolly been locked up by da popo for "sneaking" around in the bushes with my camera.......

I had "my time" on Sunday and that was more than enough to be thankful for!

As the Dalai Lama and Hōkūle'a departed Hakipu'u/Kualoa yesterday afternoon it sure felt like some of the "magic" was gone with them.......I awoke this morning feeling the full effects of "that which will not be named".....but put cranked up my motivation/theme song

http://www.youtube.com/watch?v=Fq13o6KOuuY&feature=related

Listen close to the words if you never hear this already......

I was weak, feeling betrayed by my own body.....tears flowed again this morning.... but out I went....Marchin on.....I made it to my "secret spot"

Sat on "my bench" fighting off feeling of defeat....acknowledging that this is all part of this SHIT FUKAH CANCER process......then I look out and what do I see????

a honu right infront of me coming up for breath....... some of you already know how I got the nickname "Da Honu Dude".....for those that don't......mmmmmm guess gotta wait for another blog or the book.......

It was my reminder of the Hawaiian belief of Hā–(Breath of Life )

The ancient Hawaiians knew that breath was the key to good health. The Hawaiian word for breath is ha, but ha has many other meanings. It means exhale. And since the old Hawaiians were deeply aware that without breath there is no life, ha also means life. (Pukui & Elbert) Because ha was so important, breathing was revered and often done with conscious intention.

Breath was sacred, but the Hawaiians of old also had fun with it. Children played a game to see who could exhale the longest. (Handy & Pukui) During the Makahiki festival, warriors held breath-holding contests. (Pogue)

To release stress, you too can play with your breath. Most people, when told to focus on breathing, try to take a deep inhale, straining to get more air in. The way to truly get a deep breath is to first let the old air out.

Low oxygen levels in cells may be a fundamental cause of cancer. There are several reasons cells become poorly oxygenated. An overload of toxins clogging up the cells, poor quality cell walls that don't allow nutrients into the cells, the lack of nutrients needed for respiration, poor circulation and perhaps even low levels of oxygen in the air we breathe.

Cancer cells produce excess lactic acid as they ferment energy. Lactic acid is toxic, and tends to prevent the transport of oxygen into neighboring normal cells. Over time as these cells replicate, the cancer may spread if not destroyed by the immune system.

So there it was right in front of me the reminder to JUST BREATHE!!!!

I wont bullshit you , it was a TOUGH day....most of it spent sleeping.....but to be honest now at 9:00pm I do feel like I am on the tail end of "that who's name will not be spoken"....energy levels are up......less difficulties breathing.... mood is improved.......

Just pau another hot bowl of Malia's ono-liscious chicken soup......I think the blogging helps....

"WHATEVAH'S"......looking forward to a good nite sleep and another tomorrow....

LOTS OF LOVE ALOHA AND PEACE TO YOU ALL

Going to let my favorite pic of the past weekend speak for itself...