ALOHA!!!

WOW!!!! Has it really been since November that I have written in this blog????
I APOLOGIZE to everyone who felt I "left you hanging" and I want to THANK everyone for your ONGOING SUPPORT, CARING, LOVE AND GENEROSITY!!!

Where to begin this update........I have written and re-written this in my head a thousand times....not remembering what I had written in my last blog entry what I have been going over and over in my head to begin this is exactly what I had already written......amazing that I have no recollection of writing that last blog entry.....

So, I guess it's best to pick up where I "left off" and see where this all goes....

I truly wish I could say that a magic wand was waved and boom I was back to life...

Unfortunately that hasn't been the case.

Following my last blog entry I continued to be overwhelmed with constant EXHAUSTION....November through January found me most days sleeping 10-12 hours a night, waking in the morning for 2-4 hours before napping the day away, waking in the evening for dinner then back to bed a couple of hours later.

The sleeping so much brought on the questions about depression and I completely understood why I was being questioned about this. I was called out on it by close friends who were concerned as well as my Oncologist and my primary MD.

Although still denying to everyone I was "depressed" I did agree (much to my dislike) to go on anti-depressants per my primary MD request....as a "band-aid" to help get me "over the hump".

There was no change after starting the anti-depressants...that I was aware of....at the time of starting them like I said I still denied to everyone that I thought I was depressed, at the same time placating with an answer that "although I wasn't depressed, I could see how I was teetering on sliding down that dark hole"......

You know me, and you know many times in my past I have allowed my pride to get in my way. I am not sure what it was about the "stigma" of depression that made me think if I "owned up to it" it would be a sign of weakness.........

I WAS DEPRESSED

(there I said it)

NOT "suicidal" but in a state of mourning and feeling overwhelmed.

FRUSTRATED and ANGRY about not having the energy to get out and enjoy life the way I wanted too...

Sad when I looked in the mirror to see the effects the cancer and treatments had on my body.....years of being active, going to the gym etc etc etc and all that muscle wiped away....the "moon face" from the steroids, the gut, the skinny arms and legs.....I know all just vanity.....but you know I have always had a false sense of pride in  my physical appearance.

Frustrated that during treatments I had the energy to hike 6 miles out in the dark across the flowing lava fields of Kilauea - and show up the following day back on O'ahu for radiation. 

Being able to get on my SUP board and paddle.....being able to grab a tow line behind the boad and skurf on my longboard.....hell I lost the energy (and truth be told at times the will) to get up in the mornings and go for the sunrise walks that gave me so much clarity and strength during treatments.

Before I knew it Christmas was upon us and tickets were gotten, plans were made to join my family in Colorado for the holiday....I actually about 3 hours before my flight almost cancelled the trip.....mostly from the exhaustion I was experience, but in hindsight I realized I had what can best be described as a bit of a "panic attack".....like I said I had been feeling like shit, my chest was still hurting enough to be taking a narcotic pain killer at least once a day....I was "paralyzed with fear" that my remission was short lived......but also I realize now that the thought of being so far away from home caused a heightened level of anxiety ....my home had been the one constant safe place I had been able to maintain through out the year and I was scared shitless to be away from it....giving up the only thing I had "control over"

Luckily I had close friends at my side to support me, "talk me down" and get me on the plane.
Although I slept a lot of the time I was wonderful to be around family.

When I returned I was feeling more pressure and pain in my chest ....just constantly uncomfortable.....so made an appointment to go see my Oncologist earlier than scheduled in January.
That was an eventful appointment!!!
On checking it at the cancer center they checked my vital signs and when I looked over and saw my heart rate on the monitor was hovering between 190-200 beats a minute, in my true smart ass nature I told them their machine was malfunctioning.....further checking confirmed that was my heart rate and my blood pressure was 190's/100's.......yet I was completely asymptomatic ....calmly talking....completely unaware that this was happening......

I guess a "sane" or "normal" patient would have agreed to go to the ER ...but all I could think was NO WAY AM I GETTING ADMITTED TO THIS HOSPITAL AGAIN!!!! ( I hesitated to use the phrase "over my dead body" ha ha ha ha ha ha !!!!!)

Instead I grabbed on of my Nitroglycerin tabs...popped it under my tongue and crossed my fingers.......luckily it worked and my heart rate and B/P came down to "my normal".....I haven't seen "text book normal" in a LONG TIME!!!

So thought was that this could be potentially adding to my exhaustion....if my heart could be beating so fast without me knowing it and increasing my oxygen consumption this in turn could be adding to my fatigue.....

I did follow up with my cardiologist and seems we got a handle on my "cardiac issues" with the addition of 3 more pills a day to my already overwhelming daily pill intake......again the cardiologist reiterated  that his experience was that it would be 12- 18 months before my heart "repaired itself".

So back to the day of the Onco appointment in January, prior to the appointment I had gone in for a CT scan....the results showed I did still have 3 remaining masses in the center of my chest each of which had shrunk a bit from the previous scan and showed I continued to have "no evidence of active disease".

GOOD NEWS!!! (insert big sigh of relief!!)

My Oncologist at this point also voiced concerns about my "mental well being" and asked that I go see a psychiatrist .....I agreed to do so....

Funny, it took well over a month to get an appointment to see someone.....and no one found me amusing when I asked "if I say I have the rope around my neck right now, can I get an appointment sooner" ha ha ha ha ha!!!!!!

I went and saw the shrink and he felt I was not depressed and given my circumstances I was "dealing appropriatley".......END OF THAT!

At the same follow up with the Onco, I had my first (and so far only) scheduled appointment with the "Survivor Program Doctor".....I didn't even know they existed and was kinda amazed that the didn't schedule to see me until months after I was deemed in remission........

Craziest thing about talking with him and explaining how I had been feeling over the past few months was that he said  "it was all perfectly normal" and that I was in many ways "putting unfair expectations on my self" regarding where I should be physically. He felt that given everything my body had been put through, everything I was experiencing was not uncommon.

Would have been a hell of a lot easier had I been given an appointment with them when I went into remission - was given at least a glimpse into what might be expected.

I think I mentioned in my last entry that although I have spent so much time around my patients with cancer the whole "world of remission" is foreign territory for me.

I continue to be so grateful for the emails, letters and phone calls from all of you that have entered into this world of remission prior to me. Relaying your experiences to me makes me feel "less crazy" and gives me the strength and courage to continue to move forward.
It is interesting, in all of the conversations I have had and all of the reading I have done, how different folks use different terminologies to describe this time of being in "remission"........

Terms like "remission" "survivor" NED (no evidence of disease)" etc etc etc.
For each it is different, and as I have said many times in these blog entries I do not look to speak for all cancer patients...this is my story and all I can do it to relay my experiences to you.
"CURED" does not become reality until 5 years after entering into remission....so "SURVIVOR" has been a bit of a difficult term for me to wrap my head around.

Looking to find the right "label" for this period of what feel like limbo to me .....I came across a term Olivia Newton-John uses to describe herself as a post breast cancer patient awaiting the day she hears "CURED"

That term is "CANCER THRIVER"

For some reason this resonated in me upon first hearing it......

THRIVE: (verb) 1. to prosper, be fortunate or successful  ; 2. to grow or develop vigorously; flourish

I am opting to be a Cancer Thriver.....to take all the bad shit that has happened, learn and grow from it as well as focus on all the many blessings and good things I have seen or received and flourish in them and learn from them so that someday I will succeed at being CURED

Always continuing to payforward all of the blessings and lessons I have been so fortunate to have received.

Am I Superman - NO

Can I be a strong warrior going to battle everyday - NO

I am human

There are days when the tears flow that I think they will never stop.
There are days when the frustration of my physical limitations are overwhelming.

There are days when the fear of relapsing are paralyzing.

I am human....this is my reality.

BUT this does not and will not define me.

As time goes on the days are less and less

As time goes on the fear is less, the overwhelming feelings not lasting as long.

I have to own them, acknowledge them, learn from them and most of all move on from them.

I am human.

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There have been many many good times over the past months.

Holidays, birthdays, weddings, engagements, births, graduations etc etc - all of which hold so much more meaning than ever before.

There have been events I have had to miss out on due to just being exhausted and not having the energy that day to be a part of....I hope that my not being present has not hurt anyone's feelings - I am doing the best with what I got right now.

Other than Colorado for Xmas I have been able to take a trip with a wonderful friend to Kaua'i and spend my birthday celebrating with wonderful friends on The Big Island. So thankful for the experiences.

There have been great times of just being with friends and family for not other reason than to just enjoy each others company and form new wonderful memories.

LIFE GOES ON

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So, where am I at right now.........

Physically - after a few months of feeling stronger and on the mend the last few weeks I have found myself more and more fatigued again.

It's nothing for me to again be awake for 3-4 hours in the morning before my body just plain shuts down and I find myself napping on the sofa for 3-4 hours, then not having any problems going back to bed a few hours later and sleeping a full 10 hours.
Not sure what it is, best way to describe it is that I wake up most mornings lately feeling like I have a hangover and feeling that way through out the day....functional but stunted.

I have been off all of my narcotic pain killers for months now and have weaned myself off of my nighttime dose of Valium........was a rude awakening when I decided to stop the Valium "cold turkey" after being on it for a year.....only took 2 days before the withdrawing hit me and knocked me on my ass.....

I have done plenty of research on all of the meds I am currently taking to see if the fatigue I am experiencing now could be caused by any mixes of what I am taking - nothing shows this to be the case.

Here's what my daily regimen of "post -treatment meds" looks like:

That's a whole lot of pills for a guy who doesn't like to take any medications......

Working to get off of everything, researching natural alternatives, its a SLOW process!!!

I did return to working in the PICU this past month......WHEW.....talk about exhausting!!!! 

I was able to get through a 12 hour shift with out "crashing" and it felt WONDERFUL to be back in my scrubs and on the "other side" of the hospital bed......but one 12 hour shift and I was in bed asleep for 2 days.  So right now just "easing myself into it".

About 2 weeks ago I found myself choking on some chips that I had put in my chili.....scary for me as this was one of the first things I noticed prior to my being diagnosed. I continue to feel like my esophagus is narrowed and having some troubles swallowing (keep the jokes to a minimum)

I will be going in for a swallow study in the next week or so to try and figure out what is going on.

The pain in my chest with exertion or deep breaths is just "what it is"  - hasn't gotten any better or any worse....just learning to "live with it"

Oddly enough (but given my previous track record par for the course) the morning of my follow up with my Oncologist last week I did notice while showering what I thought to be an enlarged node on the right side of my neck. I had him examine it, he felt it, but did not seem overly concerned . We are "keeping and eye on it" and I have been downgraded from every 3 month follow ups back to once a month.

There's that "paralyzing fear of relapse" I mentioned. 

As of today......I think it may be a bit bigger than was a week ago, but not so much that I am going to push for earlier follow up.

Lets get the swallow study done first then move on from there.

Something that everyone including my Oncologist finds very "strange"......not sure if I mentioned it but at some point about a year prior to my diagnosis I began to develop patches in my beard where the hair started growing.....If I went 2-3 days without shaving it looked as if I had been trying to shave Polynesian designs into my beard. Researching it I found it is called "Alopecia  Barbarae" a not uncommon occurrence that is thought to be an auto immune disorder, no real treatment for it - other than some online gels for sale that all seemed like a scam to me. 

I had mentioned it to my Onco early on in my diagnosis/treatment but he claimed to have never heard of it a a "pre-curser" to lymphoma, nor did any of the research I did.

Well, a little over a month ago I realized the hair is growing again and the bald patches are no more.

Again, I can not find any research linking to two....but will always be suspicious of a possible link.

Just happy that I no longer am having to shave at least every 2 days!!!

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I still get exhausted pretty easily with physical exertion, but am just dealing with it and pushing through. Hoping I can get to a point when I can begin work outs to help shed some of the fat I have put on and regain some of the muscle mass that was lost (yes me being vain)

I still experience the neuropathy, especially when I am tired. I know my body is "shutting down" and its time to sleep when my hands and fingers start to feel like I have tingling gloves on (a lot like if you ever experienced your feet going to sleep) seems my hands go to sleep right before I need to.
I also found when I spend a lot of time in a hot shower my butt and lower back gets the same tingly feeling.....so I have refrained from trying to wean off the meds I am on to treat that.

My heart rate and blood pressures have been stable and I no longer experience the pain I was feeling in my heart since being on the meds the cardiologist put me on. My resting hear rate does stay higher than "normal" but no where near where it was.

Mentally, most days I do not feel depressed some days I am "sad" or rather frustrated by my continued fatigue and the need for naps.......most days its an overwhelming frustration continuing to battle with finances.

The hospital bills that were so easy to "laugh off" while I "had cancer" are now an overwhelming reality....how to pay off $100,000.00 in hospital bills??????

I have heard talk of being able to claim medical bankruptcy but have yet to investigate how to do that if it is a reality, as my energies are still focused on my battle with the federal government and receiving my Social Security Disability Benefits.......the guidelines say as taxpayers paying into Social Security that we are eligible for this if disabled from work for a year or more. 

It has been over a year since I filed, I did receive a denial about 9 months ago, as everyone told me I would. At which time an appeal was filed for me on behalf of Legal Aid Society Of Hawaii.....and folks at Social Security continue to not approve me.....continuing to send me page after page of questionnaires about my physical wellness, my current treatments, my fatigue etc etc etc......at one point saying they couldn't "move forward" as they were "unable to get my medical records from the hospital".....when my lawyer and I pointed out that the denial I received, according to them was based on my  medical records they were pretty quick to "back track" and poof my they were "allowed access to my records" .

The newest "hoop" I had to "jump through" was SSDI sending me to see a shrink!! 

I wasn't claiming disability because I was crazy or depressed or had any mental issues.....

I HAD CANCER YOU FUCKTARDS!!!!
My lawyer again said this was just more crap they would send at me in hopes I would just give up on my claim.
The shrink even questioned why they had me see him.

Shittiest thing of that is guess who pays the bill for the shrink visit......THE TAX PAYERS......bullshit waste of financial resources the government claims they are short on.

I am tired and frustrated having to play this game...but I WILL NOT GIVE UP!!

I guess myself naive all these years thinking that we pay into "the system" so that should something happen that same "system" is there as a safety net to assist when we need it.......foolish me!!!

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So hopefully I have been able to catch you all up on what has been going on and where I am at right now.

Again I apologize for taking so long to get to this blog......the question of whats going on had gotten so much that it kept me thinking of that loud ass '80s song What's Going On by 4 Non Blondes!!!

I beyond appreciative for all of the concern as well as the continued support, love and humbling generosity.

I continue to try get thank you messages out to everyone, if you haven't received yours yet, I have not forgotten you!!!! The list is LONG (that is a good thing) - it is important to me for you all to know how thankful I am for all you have done for me over the past year!!

I didn't know what this blog was going to be when it started.....I still don't even recall starting it. 

Other than skimming the past entry I have never read what I have written......It all just spews out of me and onto here......someday (I think at my 5 year mark) I will go to the beginning and read it.
Again, I never intended for this to serve as a platform for me to be any kind of voice for everyone who experiences cancer......this is just my story.....in many ways this has been a therapeutic way for me to get through the past year.
I have been very surprised and yet again humbled by so many folks that have come to me with compliments on what I have done here. Telling me it helped them in some way with their own personal battle with cancer, or for some who said they gained some insight into what a loved one is or was going through in their battle.
If anything I have written over the past year has touched or helped even one person, it was never my intent, but I will forever be grateful and feel blessed that my rants and ramblings could accomplish that.

HAPPY NATIONAL CANCER SURVIVORS DAY!!!

As always:

WISHING YOU ALL A LIFETIME OF PEACE, LOVE & ALOHA

LIFE IN REMISSION.......

WOW! 

Almost a whole month gone by since the news of my remission (aka kicking Bob's ass!!)

Sorry I have not been more on top of this blog and keeping everyone "in the loop".

I apologize for the "cliff hanger" cardiologist appointment......

To be honest I have spent the majority of the past month ASLEEP

There have yet to be any big (or small) celebrations......so no need worry if anyone thinks they missed out on them.....

To be honest I am frikken EXHAUSTED.....

My days usually are...up by 7 - 8 am putter around and do the best I can not to be asleep again before noon. Once I do go down for a nap, I am usually "out" until sometime in the evening......get up, scrounge dinner......little mental masturbation in front of the TV......then to bed for the night.

I have had some "good days" where I get myself up and out of the house, see friends, go for a walk....but I usually wind up WIPED OUT for the next day or so.....

I am still in a good amount of pain, especially when trying to take a deep breath or lay down flat.....

At the cardiologist appointment he said he "wasn't surprised  by this and given the damage that was done to my heart he expects it could be up to "18 months" before the pains are "gone" and my heart is "back to normal".......he went on to say "one day you will laugh at a joke and just realize the pain is not there".......

SERIOUSLY??????WTF?????

You know this is NOT ACCEPTABLE in "my reality"......I am in remission .....isn't it supposed to be silver lined clouds, rainbows, unicorns and fucken skittles raining from the sky?????? 

It is not supposed to be me taking 5 hour naps through the day and wiped out after a trip to the grocery store

BEYOND NOT FAIR!!!!!

Closer look at my Angio CT (the catscan of just my heart) actually showed 4 of my arteries with "up to 50% stenonsis (blockage)" but my cardiologist didn't give this too much attention....he kinda sorta talked in circles around it....went on to talk about my cholesterol levels, which we never checked and turn out are now high (they have always been stellar in the past).....but given the fact that my cardiologist was leaving the country for 2 months he gave me a "just in case script" since he wouldn't be here, I would have the results sent to my house and if the levels were above a certain number I could start myself on the meds and I would see him some time in February.......

Maybe he is right.....we know my body went through hell and back in the past 10 months and I am sure it needs plenty of time to heal......but something just isn't sitting well with me about all of this as well as his "lackadaisical approach" to everything

Hundreds of times I have told the families of my patients...."just because a doctor says so, don't mean it IS SO.....if you ever have doubt or second guess or questions you feel unanswered find another doctor"

Time to follow my own advice....I know my body.....I know the pains I am feeling and the fact that the lethargy is far greater than it was even when I was on chemo......So I am going through the motions of finding a new cardiologist for a second opinion.

Will let you know how that goes.......

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"Perk of being in remission".......I GOT MY PORT TAKEN OUT!!!!! 

HATED THAT THING!!!!!

I totally scored by having mine placed by a cardio-thoracic surgeon when they did my surgical biopsy back in January....got the same doc to remove it 

Total SCORE!~!! This meant I got to go to the OR for the procedure.....and had an anesthesiologist.....who was kind enough to give me nice big fat doses of Fentanyl, Versed, and Propofol.......I don't remember a thing!!!!! 

Suck ass part of having the port removed was being banned from going in the water for the past 2 weeks.....small price to pay .....in hindsight I wish I had gone to get some more ink work done on my back tat......

It is so time to get this baby finished!!!

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I am still in a "battle" with the peripheral neuropathy, tried weaning myself off the anti-epileptic meds that are being used to treat it (was wondering if they were exacerbating my fatigue/sleepiness) but one missed dose and a few hours later my lips are numb and my finger tips get so numb its painful........once again we are back to "give it all time to heal".......

Have gotten myself off most of my other prescription medications......still needing the narcotics to help with the pain in my chest at night, been a long time since I have slept through the night.....

But one foot in front of the other.......soon I pray all of these daily pills will become a distant memory.

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So there's the "facts" where I am at physically etc etc etc

Now lets talk REMISSION 

Just as I talked about it when Alan went into remission:

"REMISSION"......one of the trickiest words I have ever heard......when you hear it there is reason to celebrate  breathe a "sigh of relief"...the first thoughts for most are "CURE".......remission DOES NOT equal cure.

Remission means you have no evidence of disease activity.... for sure there is reason to celebrate, "no more chemo"..."no more radiation"....ports removed etc etc etc 

But for the person who enters into this new reality called "remission" there is the scans every 3 months for the first year to detect disease re-occurrence, then it becomes scans every 6 months and so on and so on....most medical professionals will not use the term "CURED" until 5 years has passed without any detectable active disease.....NOT being a "big downer".....just stating the facts and I think something important for folks to be educated about when they hear the term remission.

What the "reality of remission" has meant to me.....

Given the way I was feeling physically I not for one second walking into the oncologist office on October 22 expected to hear the word "REMISSION".....I had mentally prep'd myself for round #2 of Chemo.....played the "would I/wouldn't I do it" game.....knowing full well the wrath that would come down on me had I refused further treatment from all of you would leave me little choice but to push forward and fight through more treatments.....

The pure shock and it was PURE SHOCK , of hearing remission was equally as shocking as January 25 when I was told I had cancer.......

The difference is when you are told you are in remission you leave the oncologist office with a slip of paper reminding you of your 3 month follow up appointments.......

Unlike being diagnosed and being bombarded and overwhelmed with "support", "information", "how to ______ guides".......there is nothing to navigate you through remission......

One day I am Patrick with cancer....battling like a "warrior" in a life or death war.......at times looking death right in the face and beating it........Patrick with cancer = inspiring others......

Everyday looking forward to the saturation of love, support and attention......

Then BAM.......

I am "Patrick without Cancer"........

I wish I could say "Patrick Survivor of Cancer".....but I truly do not feel my battle is over yet.

Early on I wrote of this ride feeling much like a roller coaster......

It is only now that I realize the process of diagnosis....treatments.... leading up to remission, is just like the very start of every roller coaster 

It was like the slow click.....click.....click....click.... moving up, always feeling like at any moment you were going to slip back a click or two (and in my case I sure did).......never thinking about what was lying in wait for you as you reached the very top and the ride really started

HANDS IN THE AIR, SCREAMING YOUR HEAD OFF.....

Screaming, laughing and wanting to blow chunks all at the same time....

That is what remission has been to me.....the exact moment the roller coaster car you are sitting in stalls at the highest point.....you get one second of quiet......looking out ....so far its like you can see forever.....

And then the bottom falls out.......the speed increases....wind in your face....can not hear......its difficult to see the twists , the turns, the cork screws that lie ahead of you......

Just as you get your bearing.....you once again find yourself upside down, spinning out of control.

Everyone is happy, excited, ecstatic......."Its all over" ...."its all behind you know".....

I had an unexpected opportunity to spend a few days with the one person who has had the biggest effect on me and on my life and he asked

Now that I have been given this "reset button on life" who am I going to become......

Who am I going to become?????? 

I could not answer the question , because to be honest I am just now in the process of realizing and acknowledging who I AM  at this point.......

What are my plans for "the rest of my life"?????

At this point I am still just taking things one day at a time .....one foot in front of the other......

I am out of work until at least my follow up scans and appointments the end of January.....

Looking forward to spending the holidays with my family ....Thanksgiving here with my family in Hawaii and then Christmas with my family on the mainland.....

There is still the battle with social security........

The overwhelming hospital/doctor bills that come daily and are now being turned over to collection agencies.....

Biggest of all .....the battle to get my body back to a functional point, getting myself back to working, 

moving forward from this all......

Trying to figure out just what was the reason I went through all of this....what was the purpose....what do I learn from it and take with me as I move forward in my life.......

How (can I) continue to be an inspiration to others.......

Paying forward all of the LOVE, SUPPORT, CARING AND GENEROSITY...

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I asked the question a while back "what is life after being told you are in remission" .....the REALITY other folks don't see.....

THANK YOU to a wonderful friend and support Beth for this response:

"To answer your question about worry and waiting for results of scans... I am 6 years out from treatment and 7 years from diagnosis and I am still paralyzed by the fear when it is time to schedule my scans...much less wait for the news of the scans! I want to puke and really can't function until my oncologist calls with the results!! I try to pretend it doesn't bother me but it consumes me!! Every pain or change in my body brings thoughts of cancer....I hope that some day I can say that it wont consume me but still does!! No one really understands this....and no one wants to talk about it.....so once again it is the unspoken reality we live in!"

Thank You Beth, not only for being a wonderful support and source of inspiration to me when I "needed it most"...but for your honesty and "raising the bar" for me........

Bob is GONE.......

WE ALL KICKED HIS ASS ( I truly could not have done it without all of you) 

But now it is time time to move on into life .....

The "cancer is gone"......Life goes on.....

You have been willing to follow me on the ride I took through hell....Hopefully you will be willing to stick by my side as this ride continues......

Hearing the word REMISSION does mean life goes on......but it is a different reality.

A reality that just as Beth pointed out folks don't talk about......

For most they hear you are in remission and they think "ahhhh.....its all over for you"

I am going to do my best to continue to take you all along on this "post-cancer"/Remission journey I am embarking on......I hope to continue to educate, inspire, entertain....most of all keep a dialogue going .....

I would like so that no one that has ever gone through cancer, gotten through treatment, heard the words "you are in remission"....ever has to feel like "No one really understands.....and no one wants to talk about it....so once again it is the unspoken reality we live in!"

To those of you that are reading this and are cancer survivors I would LOVE to hear you stories of survival, anything you would like to share, please feel free to send you stories to me at kanekolohe1@gmail.com

I will continue to "tell my story" as long as folks seem interested....

Tell my story of SURVIVAL.....

As I wrap my head around my new realities, the ups the downs the all arounds ......continue a dialogue 

Something I never realized.....a Cancer diagnosis does NOT go away with the word REMISSION...hopefully those of you that have accompanied on this journey will continue to follow the story as it unfolds.....I will continue to do my best to relay it to you, the good the bad the pretty the ugly.....

UNFILTERED.... UNCENSORED

As always, a million mahalos to you all for your love, support, caring, encouragement and generosity

WISHING YOU ALL A LIFE TIME OF PEACE LOVE AND ALOHA
Living In The Moment.......

http://www.youtube.com/watch?v=MecbDYcTxYg

Next Phase.....REMISSION.......

Did he just say "intermission"?????? NO he said 

REMISSION!!!!!!!

Yup Yup you heard it......as of yesterday October 22, 2012 I have been officially declared "in remission"...

NO signs of active cancer showed up anywhere on my PetScan.....

I KICKED BOB'S ASS RIGHT BACK DOWN THE PORTAL OF HELL HE CRAWLED OUT OF!!!!!

Frikkah didn't know who he was dealing with when he picked this fight!!!! And wasn't just me being the Warrior....was all of you "MY ARMY" ....at my side....at my back....pushing me forward...cushioning the blows....picking me up when I fell down.

I WILL FOREVER BE GRATEFUL AND WILL NEVER FORGET EVERYTHING YOU ALL DID FOR ME THESE PAST 10 MONTHS.

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SHOCKED????....yes I still am today. Going into the appointment feeling as shitty as I have been feeling lately I was no way expecting to hear "remission" ......I had prepared myself for "chemo round 2".....doctor was running over an hour behind so the sit in the waiting room felt like weeks...luckily I had Alan there to "entertain me" ....keep me calm....

When my Oncologist smiled and said "we did it" ..."it's all gone" ...."you are in remission"

I think for a few moments everything inside of me shut down....

then came flooding back like a slap in the face WHAT DID HE JUST SAY?????

This can't be real????

It was when I looked over to Alan and saw his eyes "wet" that I realized I had heard correctly .....

I BEAT BOB!!!

Luckily no one wanted to be the biggest pantie in the room so we held back our tears.....good thing too cause I don't know if mines would have stopped once they started.

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For those that don't know the story, I met Alan in the hospital shortly after I had been diagnosed in January. Alan was a close friend of a friend and had been diagnosed with Stage IV NonHodgkins Lymphoma 2 weeks prior to my diagnosis. (My diagnosis oddly enough came on Alan's Birthday)

A bit after being discharged we started spending time together and right away became good friends.

I think I talked a little about that in a previous post...what a blessing it was to have someone I could talk to that was "speaking my language" and going through the same SHIT STORM AS ME.

Through treatment we managed to get out hiking, go camping, sailing, even a 6 mile hike in the middle of the night to the flowing lava of Kilauea along with 2 other amazing friends Ken G and Moriah who stuck by our sides and are now stuck with my friendship for life.

I smoked him when it came to finishing Chemo first....but he did have the unfair advantage of having one extra type of chemo that had to be given separate and inpatient......so I cut him some slack and took on a few weeks of radiation to let him catch up.

I was HONORED and STOKED to be at his side when his oncologist gave him the news of his remission 

So was equally HONORED and STOKED when he was sitting next to me as I got my news

Shocked...... I think all I kept saying to him was 'WE DID IT!!!" "WE DID IT!!!!"

"WE FUCKING BEAT CANCER BOTH OF US"

I've said all along through this journey that there have been so many blessings that have come my way....by far one of the biggest is the gift of this friendship.....

a bond unlike any other.....

(someday I will write our "whole story"......it's got major hit movie all over it.....just waiting to find a #6)

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So phone calls were made, small kine tears were shed, texts sent, facebook updated .........lunch and dinner celebrations with great friends had.

it was a crazy whirlwind......I crashed hard last night.....slept long and hard......

Today oddly enough felt very similar to that day after I was diagnosed.......

I have been NUMB all day....walking around I think still in a state of shock....just kinda going through the motions.....

Had an appointment with the surgeon who put in my port....arranging an OR time to remove my port  in the coming weeks.

Wandered around the grocery store....not really sure what I was doing there (but stoked to run into my great friend Malia - on of all days her birthday.....I got one of those hugs that kinda brings you back to reality)

REMISSION REMISSION REMISSION.......I just keep going over it in my head......seriously>> ??? NO jokes??? I really beat cancer????

It is almost as shocking as being told you have cancer, but WAAAAAY BETTER shocking!!!!!

I have been floored (once again) by the response to the news and the outpouring of love and support.....came close to crying.....still haven't done it yet.....need to .....

but this cry will be unlike any other cry of my life......this will be the most cleansing cry I have ever had...feel it in my core that I need to be in the ocean to do it......

guess where I will be at sunrise tomorrow.
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So I am still feeling pretty "beat up" and fatigued.....My oncologist says he's not shocked ....body has been through A LOT going to need time to heal......but unless anything out of the ordinary pops up I will not see him again for 3 months at which point he will re-evaluate me for potential return to work.

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As for "the heart issues"......I "got" a copy of the report from my ECHO and the CT of my heart......I don't see my cardiologist till Tuesday, but to hell if I was gonna wait!!!
Seems the CT shows about a 50% blockage of my right coronary artery....with calcifications that make accurate percentages hard to decipher.......the pericardial effusion is still present , but per the ECHO it is has decreased markedly.

Sooooo a half blocked coronary artery......could it be that getting cancer , kicking cancers ass led me to a point where we detected this early , preventing me from having massive heart problems down the road?!?!?!?!

Weird how things work......will not focus too much on it.......or try ask too many "medical friends"

Will wait for Cardiologist on Tuesday and see where we go ......to be honest with you this whole adult patient treatment thing is so far out in left field for me......and the last thing I want to do is become a "medical google nut"!!

For now I would like to just spend the next few days taking in this "new reality" this "new phase of my life"

Was funny how everything I saw through my eyes changed when I was diagnosed and then yesterday sitting with friends I realized it happened again......."remission" changed the way I see the world......

Going to cut this blog short.....TIRED!!! 

Promise to update here soon!!!

going to for sure be a lot of thoughts I am going to need get out there.......

THANK YOU ALL AGAIN FOR YOUR HUGE OUTPOURING OF SUPPORT AND LOVE

The "celebration" of my remission has been bittersweet ......Can I ask you to please keep my "bestie" Terry in your thoughts.....Terry is with her folks on the mainland and yesterday just a few hours after I was able to share my good news with  she and her mom , her dad who had been admitted to hospital last week, suddenly passed away. David too was a WARRIOR beat the shit outta his cancer and was 8 years past his battle.

LOTS OF PEACE LOVE AND ALOHA TO YOU ALL

P

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

WOW!!  "The night before" came fast.....tomorrow is the "big day"

Not going to rehash all the questions that have been following me around bogging me down....rather spend tonight reminiscing on the good things that have happened over the past 10 months.

I have talked about it before and will talk about it again and again and again......the blessings I have been receiving the past 10 months are mind blowing.

From the very moment this all started......January 25, 2012 folks were right there.....by my side....at my back.

The overwhelming amount of love and support that enveloped me around my time of diagnosis blew me away.....so much LOVE.....and in so many ways without the cancer diagnosis what a waste it would have been to go through this life never realizing the impact and changes I have made....again I will say....no matter what .....if my "time here is done" at least I know I left my mark in this world and am so happy and so thankful to all of you that reached out to me to let me know that I have in fact made a difference and that this world truly has been made a little bit of a better place because I was in it.

From the start with so many stepping up and being BEYOND GENEROUS with the chipin account, and the other generous gifts that took the burden of worry about losing my place to live , losing my independence.....losing everything......I AM SO VERY THANKFUL TO YOU ALL ( and I still have yet to finish sending my gratitude to each of you personally - your head would explode if you saw how long the list is!!)

The generosity and support continued through out. Emails, Facebook messages, cards and packages in the mail. 

So blessed to not only meet new and amazing folks in my life ......for sure one of the best friends I will ever know and who without him by my side, my fellow warrior, my sometimes inspiration, my sometimes the push I need to hold my head up...... I would have been like a fish out of water these past months....THANK YOU ALAN!

But, also to be re- connected with so many wonderful friends from my past, friendships that span our globe.

And to be so blessed to have the bonds of family and friendship of those in my life strengthened beyond anything I could ever imagine.

One of the most amazing things of all of this was the benefit/fundraiser my friends and family threw for me on August 4......how do I even begin to describe that night.

So much love contained in one place....

 I  was overwhelmed by the group that took on the task of putting the entire event together

A HUGE MAHALO TO Noelle, Rudy, Stephanie, Marita, Allison, Shawna, Deroy, Kolea, Simon, Moana, Mali and everyone else not in the pic that worked so hard to make the night a success!!

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I know everyone who worked so hard putting everything together as well as myself were absolutely blown away by the amount of folks that showed up at the event.

Folks I would have never imagined, folks I had never met and folks that I knew without a doubt would be there to support me no matter what.

I guess I can let the pics help tell the story of the night.

MAHALO  to Noelle my wonderful friend and owner of "It's A Wild Life Photography" (http://www.itsawildlifephotography.com/) for all of the amazing photos and the constant love and support !

Need and amazing photographer for a family sesh or event check Noelle out , yesterday she did an amazing job photographing my hanai brother Dustin's marriage to Asia.

MAHALO  to THE VENUE for giving us the perfect spot to have the event!!!

MAHALO  to my brother Koa Johnson and his beautiful life partner Ann Marie for decorating the spot with their impeccable floral arrangements from The Flower Farm ( http://www.flowerfarmhawaii.com/) Seriously anyone on O'ahu looking for flowers for any event check them out, you will NOT be let down!

A HUGE MAHALO TO EVERYONE WHO DONATED TO THE SILENT AUCTION.....AND TO THE "SILENT AUCTION CREW" FOR GETTING MY PHOTOS DISPLAYED !!

The silent auction was a HUGE SUCCESS!!!! And YES in the coming week I will let everyone that was interested in participating but couldnt be there how they can get one of my canvas prints delivered right to your front door......trick is your going to have to match the highest bidder!!

MAHALO Deroy for filling in as "DA BEST EMCEE EVER"!!!

MAHALO to a wonderful friend and someone who has seen me through some of the roughest times the past  months, Eric Keawa performing with his daughter Pomaika'i and his other performing 'ohana

\

MAHALO TO Mailani, her 'Ohana and performers

Huge MAHALO to performers John Yamasato and Darin Leong (sorry can not find pics of you guys performing)

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 LOVING my Feeney 'Ohana!!

 Two amazing and very special ladies in my life!!

 Nice my bookends huh??\

 TONS OF LOVE FROM MY  ENGLE 'OHANA

 My Ocean Paddler TV boys

 receiving the love from my sister Arna

Huge LOVE from my "honu 'Ohana"

PICU 'Ohana

One of my FAVORITE PEOPLE EVER TO ENTER MY LIFE!!

Never going to be a serious pic of the 3 of us!

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So much love , so much support....sooooo many pics 

Here is the link to an amazing video Noelle put together of all some of the pics for those that haven't seen it

http://video214.com/play/xFWkg1FnaFhehkMri7mbcQ/s/dark

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I wish you all could have been there......trips me out to think that if you ALL were to show up we would probably have to rent out Aloha Stadium...and the LOVE still woulda spilled over

how the hell did I ever get so lucky to be on the receiving end of so much love!!!

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I wish you all knew how much your generosity and support has had a direct impact on the past 10 months....the hospital bills are still mounting and climbing...still in the battle to receive my Social Security Disability Benefits.....state decides I can live on $10.00 a day ( NO SHIT) for food - HUGE MAHALOS  to the "Mangia Mangia Club" for helping with that!! 

and $300 a month to pay bills.......I have to keep asking myself WHY have I paid into the system since I was 16???

But thankfully for me KARMA is not a "bitch" 

Apparently along the trip that has been my life I have put enough good out there that KARMA  has turned around and blessed me with the support and generosity  I have received from all of you.

I am ecstatic that I have been able to pay the rent on my house and keep the bills paid.....none of which would have been possible without all of your generosity and support

THANK YOU!!!

So it's past midnight here in Hawai'i.....should try to get some rest for tomorrows big appointment

.....nothing I can do now to change the results that I am going to here....but will be nice to get some kind of answers and ideas.
Wish I could say I was going to go in standing strong, ready to take on what ever they want to throw my way this time.....but truth be told .....I am EXHAUSTED  and SCARED SHITLESS and just want this to all BE OVER.....

Frick....just planning Thanksgiving and Christmas this year will be nice.!!

As always MAHALO TO YOU ALL FOR ALL YOU HAVE DONE FOR ME!!

Special Prayers out to Terry Marmie and David....wish I could be with you......

Lisa you are in my thoughts all the time and wish I could be with you in the coming weeks.....

PEACE LOVE AND ALOHA TO YOU ALL

"Why did you do all this for me?" Wilbur asked. "I don't deserve it. I've never done anything for you"

"You Have been my friend," replied Charlotte. "That in itself is a tremendous thing"

--E.B. White, Charlotte's Web

FEAR

"I must say a word about fear. It is life's only true opponent. Only fear can defeat life. It is a clever, treacherous adversary, how well I know. It has no decency, respects no law or convention, shows no mercy. It goes for your weakest spot, which it finds with unerring ease. It begins in your mind, always. One moment you are feeling calm, self-possessed, happy. Then fear, disguised in the garb of mild-mannered doubt, slips into your mind like a spy. Doubt meets disbelief and disbelief tries to push it out. But disbelief is a poorly armed foot soldier. Doubt  does away with it with little trouble. You become anxious. Reason comes to do battle for you. You are reassured. Reason is fully equipped with the latest weapons technology. But, to your amazement, despite superior tactics and a number of undeniable victories, reason is laid low. You feel yourself  weakening, wavering. Your anxiety becomes dread.
Fear next turns fully to your body, which is already aware that something terribly wrong is going on. Already your lungs have flown away like a bird and your guts have slithered away like a snake. Now your tongue drops dead like an opossum, while your jaw begins to gallop on the spot, Your ears go deaf. Your muscles begin to shiver as if they had malaria and your knees to shake as though they were dancing. Your heart strains too hard, while your sphincter relaxes too much. And so with the rest of your body. Every part of you, in the manner most suited to it, falls apart. Only your eyes work well. They always pay proper attention to fear.
Quickly you make rash decisions. You dismiss your last allies: hope and trust. There, you've defeated yourself. Fear, which is but an impression, has triumphed over you.
The matter is difficult to put into words. For fear, real fear, such as shakes you to your foundation, such as you feel when you are brought face to face with your mortal end, nestles in your memory like a gangrene: it seeks to rot everything, even the words with which to speak of it. So you must fight hard to express it. You must fight hared to shine the light of words upon it. Because if you don't if your fear becomes a wordless darkness that you avoid, perhaps even manage to forget, you open yourself to further attacks of fear because you never truly fought the opponent who defeated you."
- Yann Martel, the novel Life of Pi

Stuck in limbo....

So I this entry I am just going to "cut to the chase" as they say...(ever wonder who the hell "they" are when folks use that "as they say line"??)

"Test" are done....funny you think test in high school were the "most important tests of your life"......then there are the pre college exams.....blows those baby high school tests right out of the water.....then there are the actual college tests which made the pre admissions tests seem like childs play......yet everyone of these tests is designed to be a mile stone.....a "stepping stone" so to speak, each designed to prepare you for what lies ahead of you......pass = great move forward, fail = sucks but can try again till you get it right.

NOTHING in my life has ever prepared me for the testing that I have gone through since this past Friday and worse than that no one has ever given me the lessons or tools that would help keep my sanity while I await the result.....if there is a purgatory I imagine it is something like this state of limbo I feel like I am caught in.

These are no longer Pass/Fail tests.....there was no studying in the world that could have prepared me for them and yet 

THEY ARE THE MOST IMPORTANT TESTS I HAVE EVER TAKEN IN MY LIFE

Would like to think that if something was "terribly wrong" I would have received a phone call (you know like they show in the movies) truth be told, by doctors probably haven't even looked at my results and probably wont until just before I head in for the results on Monday.......and besides what are they going to do call to tell me "you have cancer".....that was so "last season"

Been feeling a lot like that lately , like a TV series that went on hiatus, things got quiet, some of the actors have left the show all together, some have moved from supporting roles to main character roles and there have even been some new additions......"fans" got quiet and now all my "fans" are eager for the "season premiere"......

The episode called "THE BIG NEWS....."

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So, what's been happening during "hiatus".....not a whole lot. 

The physical pain has become a constant battle, just the physical act of lying down or getting up from a lying position can cause pain enough to make me cry out....I try to get up and out of the house, but most days I just sleep the day away......seriously up between 6-8 AM then back to sleep on the sofa by 10-11am and I usually wake around 4pm.

I have found that days out, like Monday and Tuesday back to back testing left me more tired and in a whole lot more pain by Wednesday than usual.

The crazy thing is I just can not figure out what the hell is going on.......It is like there is a constant fire burning in my chest then at times there is a sword being stuck right through the center of me.

It is EXHAUSTING....... FRUSTRATING .....INFURIATING.......FRIGHTENING....

and of course being the ICU nurse I want answers and I want them NOW !!

Is it the lymphoma taking up more space in my chest??? Is it the damage that was done to my heart worsening?? Is the lymphoma gone...but now this is how I am going to be left thanks to "what cured" me?? Was I misdiagnosed......did we miss something.....should we be testing for this.....what about that....should I risk what money I have to "survive" on for "alternative treatments" that in the end may give me survival.....

Who am I any more.....

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I think its understandable and probably to be expected that this is all taking a bit of a toll on me mentally.

Depressed.....yeah I think so. Suicidal NO WAY....but wondering if death would be a better route than living with all of this pain, sidelined - unable to do the things I love......watching everyone else move on.....

I have been "living"  on Google trying to figure this all out. Hate to admit it but spending more time crying than laughing

Waiting for test results that can potentially affect you life expectancy or the possibility of more torturous treatments meant to prolong your life (irregardless of what they do to the quality of it) can take a toll on you.

And for those of you that like to remind me that there are others out there there that have had or have it worse than me, that like to tell others I should really just "suck it up" and "stop my whining" 

FUCK YOU!!!

That is your shit, so don't put it off on me.....

this is MY LIFE and my life has been turned upside down and inside out in the past 10 months.

This is about one person ......ME and MY battle to the death...either the death of my cancer or the death of me.

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Sorry, I am realizing I really don't have a whole lot to say in this entry......I keep writing and deleting.....writing and deleting......so rather than "force it out" I will chalk it up to just being exhausted - physically and mentally.

Wanted to at least give you all the heads up that testing is done....results will be in Monday....I will need some time to talk to folks in person/on the phone so will relay the results here on Tuesday.....

One day at a time, one foot in front of the other...

As always THANK YOU for all of your constant caring, support and generosity. I truly can not image what the past ten months would have been like had it not been for ALL OF YOU!!

LOTS OF PEACE LOVE AND ALOHA 

P

A message from my great friend Jill relaying something my little 9yo buddy/her son had to say:

"At dinner tonight Joey said he thinks he discovered the cure for cancer. I said what is it? And he said LOVE"