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...

Pau Chemo Round #4

Aloha.....sorry to be gone so long from this blog.....thanks for sticking with me and the questions on how I am doing and when next entry will be...

Well its 2:00am and I find myself sleepless in Hakipu'u....was woken up about 2 hours back when the deep bone pain secondary to the Neulasta shot I got this morning....good news is the first Neulasta shot following round #3 worked and my counts were up before Round #4 so no need for delay treatment.

This is also the first night since the start of all of this that "Da Puke Monster" is lingering VERY CLOSE BY!! So since no sleep why not blog....

Here we go....

Chemo Round #4 was this past Monday ......as far as the actual infusions go this one was the WORST!

I started feeling nauseated again during the Rituxan infusion, the one chemo that should be least likely to cause nausea during infusion (according to the "experts") ...well this time the nausea led right into full on puking......puked through almost the entire second half of the infusion ...about 2 hours...nothing they gave me to stop the puking seemed to want to work....just had to push through it.

By the time all my chemo's were pau and time to go home I was feeling good ...was a looong day!

Since Monday's infusion I have felt closer to the edge of puking than I have with previous infusions.....

Tonight is actually the first night I set up the "puke kit" next to the bed.....nothing worse than not making it all the way to the toilet!!! Sipping my ginger tea and hoping my phenergan kicks in...

Luckily no hiccups post chemo this round!!

Physically I have been doing ok between rounds 3 and 4....for sure the fatigue sets in faster, knocks me down a bit harder and lasts a whole lot longer.

Lately the fatigue is accompanied difficulty catching  my breath, and the raspy voice that hasn't been around since the beginning of all of this.

Did a chest x-ray Monday prior to starting my chemo -nothing showed that looked "new" and thoughts are that the dyspnea and raspy voice are just counter parts of the fatigue.
Basically my Oncologist congratulated me for "finally being a normal cancer patient" meaning this is the "normal' kind stuff we go through.... (he also called me a "pantie" after seeing my xray - LOVE that guy!!)

We discussed the neuropathy side effect of the Vincristine toxicity....the loss of feeling in my finger tips I mentioned in previous post.....it hasn't gotten any worse or any better....although I would like to be "Supah P" and stick it out, full dose - on time - get through all of this.....the concern of the neuropathy being permanent got us to agree to 1/2 the dosage I am getting and "wait and see".
According to the Oncologist, "if any one of my chemos needed to be discontinued this is the one that would be safest to stop"........I am more than half way through - I DON'T WANT ANYTHING STOPPED!!

I have been doing more and more research and trying different natural sources of alleviating some of the side effects of all of this and help my body fight and mend....gotten into juicing - that's a whole new world.....haven't quited gotten the mix of ingredients down but still at it daily.

Reading alot of dietary/cancer treatment books...realizing there is NO ONE MAGIC BULLET  out there that is going to cure me on its own....but rather finding the adjunct "therapies" that will work along with the chemotherapies......and in the end completely change my eating habits which can only benefit me in the end.
I have been able to maintain my weight after the initial loss at start of all of this......all of the home cooking that gets dropped off for me full of healthy ingredients and LOVE - is for sure keeping me fed well and taken care of.

MENTALLY/SPIRITUALLY

I feel like I am doing better.....for sure the things that work best for me is the just having something to look forward to, helping out with the new canoe, being out on the canoe, have picked up my camera again and been working on my photography. Spending time with friends, reading and mostly just enjoying seeing life through a different set of eyes......

Still get plenty challenges with "the stresses".....completed the application for Social Security Disability ...you know "the program we all pay into that is supposed to be there in our time of need"...did my phone interview and at the end of it was told my file would now be turned over to the "Disability Decision Department" who would review my case and I could expect to hear back from them in 3-6 MONTHS

Seriously , no jokes.......I was STUNNED.....I have been out of work, no income since January 25 how the hell do they expect me to survive another 3-6 months .....makes no sense...I was told its" just the way it is".....we will see about that!! Hopefully I will have better news in next blog...I am not giving up that easily.
I mentioned that as of March 1 did receive my state health benefits....leaving me with just over $100,000 in bills from Jan/Feb.....thankful to finally have something...until this past weekend when for the first time I went to use my HMSA/QUEST card to pick up a prescription refill and was told that my coverage DOES NOT COVER THAT MEDICATION!!!

Blew my mind, and pulled the rug right out from under me.....had my full on crying in the pharmacy....was  just the feeling of being beaten down once again by the system, feeling completely helpless.....Paid for my meds and got out of there (much mahalos to everyone who stepped right up and offered to get my meds for me!!! Best hui I could ask for!)
Come to find out that the QUEST (state healthcare) that I was instructed to apply for and now have is NOT the one that is best suited to my needs....there is a whole nother level called QEXA which is the program coverage for folks considered "disabled".....since as of now it appears I will be out of work for at least one year...this is the plan I should have been on .......

SOOOOOOO......the drowning in paperwork that I thought pau, has restarted.....telling you if the cancer don't kill me all the stress from this shit will.
STILL waiting to hear final word/approval for my food stamps....not sure why taking so long...I made the 5 trips personally each time they said there was "another bit of paperwork needed".... hoping that answer is just a phone call away....but of course that phone call means - I call them in the morning, leave my name and case number then have to be by the phone all day, sometimes until the next day till I receive a call back......good times 'eh?!?!

Once again I have to say how thankful and fortunate I am to be blessed with so many generous folks in my life.....if it weren't for the chipin site and all of the financial gifts I have received I would have been out of my home already.....losing more of my independence is one of the things that frightens me more than the rest......that chipin site has been a blessing....hoping can reach the goal by months end deadline  if it starts to feel as if I am BEGGING  it is because I pretty much AM!! Been getting a fast tutoring in begging thanks to the state and federal government agencies- all of the money being raised on that is going to pay rent, electric (had to bite the bullet and cancelled the cable tv/dvr) food and living expenses.

The medical bills will have to wait... 

working hard on securing a site to host a benefit/fundraiser....been hard at work going through my photography and getting pics ready for the silent auction....am looking forward to being able to "give something of myself" back in thanks for folks generosity.....once the spot and date are set we will get the word out.

Had a wonderful Hakipu'u 'Ohana Easter.....full of love, laughter and memories.
So much fun having all the kids around for the massive Easter egg hunt....and just being surrounded by so much love....
For sure highlight was getting Ka'aumoana on the water for the first time....

This wa'a in particular holds a lot of different meaning for plenty different folks and for plenty different reasons......for me personally Ka'aumoana is a reminder of my FUTURE, after being blessed this coming weekend at the Kualoa/Hakipu'u Canoe Festival and sharing the waters with Hōkūle'a this is the canoe that will be moved over to the Disney Aulani Resort and once I am able to be back at work this is the canoe I will be working on I CAN NOT WAIT!!!

So that is pretty much a quickie "catch up sesh" - am getting sleepy and should ride the wave.....one day at a time......one foot infront of the other....I am marchin on.....

LOTS OF LOVE ALOHA AND PEACE TO YOU ALL