Thursday, June 28, 2012

Let's get to zapping ........

So following the "not so awesome" news of the Pet Scan results last week it seemed very appropriate to have a "Weekend of Denial" with my Hakipu'u 'ohana and friends. 
Needless to say it was a much over due PERFECT WEEKEND spent on the water and enjoying everyone's company at "Sweet Home Hakipu'u"

Figure I'd let the photos do the talking~~~! Mahalo to Steph and Momi for capturing the weekend in photos! It was nice to be in front of the camera instead of behind it all weekend.
I already got asked plenty about that "big lump" on my right chest....its not a tumor (or a goiter - Alex!!) that is my Port, where they stick the needle in to draw blood, hook me up for chemo/fluid infusions etc plans to take it out anytime soon. So was the perfect way to put "reality" aside for a while and it was a huge SUCCESS!!!

Physically I been doing plenty better, less fatigue, increased strength (although the weekend wiped my ass out!!)
Been managing the pain better, no more narcotics, just mostly the neurontin and lidocaine patches to my lower back...going try some acupunture and lomi lomi in the next week. Saw the foot specialist about my infected big toe.....he seemed happy with my nursing skills and didn't feel the need to remove the entire nail ("yet").... was big kine suprise when he started cut away 1/3 of the nail with scissors and I realize I didn't feel it......guess I been having some pretty good peripheral neuropathy to my toes but never realize it.
The foot doc does not thing the infection was from the pedicure Kolea took me to , he thinks I prolly rammed something up under the nail and never felt/realize it.
Either way gotta give it a few ore days for see if pus stops and if starts looking better, or else gotta go back and have the whole nail removed......I keep thinking since I get no feelings there anyways a bottle of Jaeger and a good pair of surgical scissors can do myself......foot doc said he did not recommend the pliers trick!

Soooooo Reality came crashing back down this past Tuesday

I didn't get to do my sunrise walk down to Mokoli'i since my appointment was so early.....and was put at ease when I walked into the exam room and there was a painting of "my early morning walk spot" hanging on  the wall.
I met with my new Radiation Oncologist, she super cool, seems up on her game, she and the staff made me super comfortable. She took the time to sit and talk with me and answer ALL of my questions.....and you know I had plenty!!
I did have "the rug pulled out from under me" a bit during our discussion.....basically .... like we knew everyone is very concerned about the areas of active cancer in the center of my chest, despite having been through my 6 rounds of chemo. Big concer is that they will spread the cancer around again as fast as they did back in no one wants wait too long to get radiation started. I did ask what alternatives to the radiation I had.....basically.....the only alternative at this point would be a different chemo regimen, but I had to agree when she said it would be stupid to go there now.......since that is the biggest and last (except for stem cell transplant) "gun" in our "arsenal" and if we use it now and it does not work , we are left with nothing.......that was a big fat dose of shitty reality right there......
I was SHOCKED first when she told me plan was radiate for 5x a week (monday-friday) for 5 weeks...I had been planning on 4 weeks, then when she explained the plan is to radiate me basically from my neck to the lower part of my ribs on both sides I was even more shocked........I just assumed we would just be pointing the big beam right athe the last few shitheads remaining in the center of my chest and blast them away like the old Space Invaders game........
The reasoning behind radiation to the entire chest is that there is a big concern that since there is evidence of active disease present in the center of my chest that there is a good chance of microscopic disease activity in all the spots where we previously saw the lymphomas, these microscopic areas wold not show up on scans at this point.

My biggest concern about the radiation has always been the potential for damage that can be caused to the surrounding tissue, for me the biggest of my concerns is my heart.....there is no way any of this would be worth it if I were to wind up with heart damage that left me physically stunted and having to spend the rest of my life "on sidelines" watching others......I would rather be dead.
Was a huge wake up call when she started talking about the potential for damage to heart, lungs, larynx and spinal column.......blew my mind!!!!
She then went on to explain that I will be getting not conventional radiation...the kine where they shoot a big beam right through you front to back...but rather I am lucky to have access to "state of the art" modern radiation - INTENSITY-MODULATED RADIATION THERAPY (IMRT)

IMRT is an advanced mode of high-precision radiotherapy that uses computer controlled linear accelerators to deliver precise radiation doses to a malignant tumor or specific areas within the tumor. IMRT allows for the radiation dose to conform more precisely to the three dimensional shape of the tumors  buy modulation - or controlling- the intensity of the radiation beam in multiple small volumes.
IMRT also allows higher radiation doses, the plan is that I will be getting the maximum, to be focused to regions withing the tumor while minimizing the dose to surrounding normal critical structures (my heart, lung, larynx and spinal column).
They will match a CT up with my PetScan and with computerized calculations determine the dose intensity pattern that will best conform to each of my tumor shapes, or the areas they will be radiating.
Soooo basically it comes down to a combination of multiple intensity-modulated fields coming from different beam directions to produce custom tailored radiation doses that maximize tumor dose while minimizing the dose to adjacent normal tissue.
Radiation Therapies, including IMRT, stop cancer cells from dividing and growing, thus slowing or stopping tumor growth. Plenty cases radiation therapy has been shown capable of killing all of the cancer cells and shrinking or eliminating tumors.
Now we going DEEP into my new knowledge of radiation.....
The Equipment they going to use:
A medical linear accelerator (LINAC) generates the photons used in IMRT. The machine is the size of a small car. The energy of the photon in the order of 10 millions volts is generated to penetrate the body to the tumor(s). During 15 minutes or so of treatment (Yes I will be driving 45 minutes one way for a 15 minute treatment 5x a week for 5 weeks = SUCKFEST) I will have to lie still while the linear accelerator delivers multiple beams of radiation into me from various directions. I will need a special mold/brace constructed that will harness my head/neck to help ensure I am in the exact same treatment position everyday. Will also get semi permanent tattoo's marking areas on my chest ( I plan to have those turned into permanent tat's once this is all over.....a good way to document my journey) 
I shouldn't feel anything while getting the radiation treatment. Just gotta be in the noisy room alone.

My Radiation Oncologist says biggest side effect I have to look forward to will prolly hit right around 2/3 way through treatment and that is Esophagitis - inflammation/swelling and sores in my esophagus....should be spending plenty time at Lanikai Juice downing protein shakes.....KAILUA MONKEYS ALL DAY EVERYDAY!!!
the other "text book side effects"

The early ones occur during of immediately pau treatment and are typically gone in a few weeks are tiredness/fatigue (now that I am just getting over the chemo fatigue) and skin problems. Skin in the treated radiated area can become more sensitive, red , irritated yaddah yaddah yaddah.....Radiation Onco says I will prolly get real brown on my chest but it will fade.....and I will have to keep my skin out the sun!!

The late side effects (which are rare) can wait to show up till months or years following treatment and these are usually permanent......
Brain changes (got that covered already with my chemo brain), spinal cord changes, lung changes, infertility, lymphedema (cause my lymph nodes dont got enough worries) and the one I always like the best.....
(insert drum roll please)
didn't they already warn me the chemo I got could cause secondary cancer........SERIOUSLY?!?!?!?!
C'mon folks your killing me (no pun intended)

"ONE FOOT IN FRONT OF THE OTHER" .....right?!?!?!
After meeting with the Radiation Team I got home and decided I needed my daily walk bad so did it in the evening....
NO painting hanging on a wall can ever compare to the real deal!!!

So tomorrow I head in for my "staging" appointment.....get my "headgear" (all I can think is Joan Cusack in 16 Candles - anyone got a poodle sweater I can borrow??), get my tatoo-ing (not the ink job I was planning) and lay still for a while so they can calibrate the machine to my specifics.....prolly a good idea for me to bring a few "nursing doses" of some of my "special relaxing pills" ......have you ever seen my try sit/lie still for a long period.....
Then Monday we start the 5 weeks of zapping....

According to my regular oncologist we will have to wait almost 2 months before doing follow up scans to see how the cancer responded to the radiation.......that's going to be a loooooong 2 months and I think prolly a good time to plan a trip!!!! 

For now its one day at a time....

I hope this helped answer all the questions that have been circling......radiation is very very new to me , it is something that I have never experienced first hand with any of my patients. Remember in the beginning of this shit storm when I talked about being "lucky" not to be full of anxiety facing the unknown of chemotherapy because I have seen if first hand through out my 16 yrs as a nurse....... well I went bachi I find myself FULL OF ANXIETY AND FEARS.

As always A MILLION MAHALOS to all of you for you unwavering love, support, caring and generosity.....I too thought for sure this would all be pau following chemo......but guess I got some more "life lessons" to learn on this journey.
I am so very appreciative to all of you who have reached out to me to let me know my little blog has helped give some of you better insight or shed light on some of what your loved ones may have or might be experiencing......that was never my intent here (actually I not really sure what my intent was with this blog) but if my sharing my story unfiltered, uncensored and honestly helps even one person or the family/loved one of one person facing/dealing with/ battling cancer......then I am TRULY BLESSED!!!



Thursday, June 21, 2012

PET Scan results

Try make this short and sweet.....I am still "processing" the news from today.
Got some "good news" and some "not so good news" to share......Why is that always how this shit works??

The PET Scan shows positive results in that "The Neils"....those were the random tumors and overgrown/overactive lymph nodes in the left side of my chest and the one on the right side have returned to normal/are gone.......NO MORE NEILS....

As for Bob (the mass in the center of my chest) way to describe it is think about one big island that breaks up into smaller pieces...that's kinda what it looks like Bob did on the scan results....for sure there is 
A LOT LESS OF BOB than there was back in February!!

Now for the "kicker" (the "not so great news")......what is remaining in the center of my chest  have been getting bigger and are still considered active the oncologist put it "hot spots".....

This means we do not wait we move right into radiation therapy sooner rather than later with the hopes that the radiation will take care of these little bastards that seemed immune to the chemo-therapies.

I have an appointment with the radiation folks on Tuesday morning....I have a lot of questions before agreeing to radiation.....biggest  one is the potential for damage to surrounding tissue.
The radiation will be given pretty close to my heart and to be honest, for me the risk of damaging my heart to cure my cancer ....NOT an option....I do not want to be a survivor with a damaged heart who has limited physical activity capabilities....not the life for me!!!

So I will meet with them see what they say....with the way technology is today and how they can pinpoint the radiation to "where it needs go" I am pretty certain they will tell me my heart (and lungs) are safe.

If so then it will be radiation therapy 5 times a week for 4 weeks.......if you knew how far I live from the hospital you would understand what a BITCH that is going to be, not to mention how much the gas is going to cost....but again we deal with that when get to it....

After 4 weeks of radiation therapy we will have to wait a couple of months before the full effects of the radiation can be assessed, if at that point the cancer is still active ...then its back to 6 more rounds of chemotherapy.....

How do I feel right now???? mmmmmm.......NUMB!
For sure great news to know that plenty of the cancer responded and was wiped out by the chemotherapy, but what weighs heavy on me right now and what seemed to concern my onco is that despite the chemo there are these few spots that seemed to have gotten stronger...... 
so now we wait and see how they respond to radiation.

To be honest I am between wanting to cry my eyes out or wanting to break something.......
I am sure what I need is a good cry and a good night sleep....wake up tomorrow fresh and ready to put one foot in front of the other.......

Remember a few weeks back when I got my first ever (and last ever) pedicure????? Can't prove its from that , but I have developed a nasty infection under the nail of the big toe on my right foot, if you push down on the nail hard enough pus will shoot out a good distance from the toe....
So I have a early morning appointment with a podiatrist to probably have the nail removed from the toe so that we can treat the infection....
How's that for my "one foot in front of the other" mentality.....

Can never do anything normal/expected and always gotta keep everyone on their toes (pun intended)

Long story short , not 100% great news today....coulda been better , but coulda been plenty worse
I haven't fought this hard to get to this point to go belly up now.....I can and will handle whats coming next
And knowing I have all of your love caring and support will help me get through.


Taken today June 21, 2012 made it home in time to get out on water ....
good way to say "F**K ALL THIS!!!!
(and YES that is my hair growing back)

Wednesday, June 20, 2012

"Cancer and The Single Dude"

Start with my "disclaimer".....this blog is about ME and MY experiences.
One individuals journey through cancer, from diagnosis, through treatment and one of these days passing the "finish line" to becoming a SURVIVOR. 
This is written from my perspective, these are my thoughts, feelings, actions, in-actions etc etc....
If there is anything that offends you, if you think I shouldn't be "thinking certain thoughts" or "having certain feelings".......TOO BAD.....I have a right to everything I am feeling......and have a right to put down here what is on my mind, in my head, in my heart.
I am NOT speaking on behalf of any other folks fighting cancer, I can not and would not try shed a light on their experiences ....for each of us , although on similar journeys will have significantly different experiences.
So the title of this blog entry "Cancer and the Single Dude" .....guess I am trying to give my perspective on what this journey has been like going through it single and childless.
First as you all know I have a HUGE ARMY of love caring and support spread all over this planet, pulling for me, pushing me, supporting me and for that I will forever be GRATEFUL!!
But at the end of the day ....when I rest my head down on the pillow.....I am alone, alone with my thoughts, alone in the the past 5 months I have not had the opportunity to put my head on someones shoulder and cry myself to sleep, being held and feeling safe through the night.
I am soooo not whining here!!! 
This is just the way it is....the way things worked out for me......I have been single for a few years now.....I can give you many excuses , "broken hearted"...."too busy"...blah blah blah
I am sure my family and friends would interject a whole lot more scenarios if they had the chance.
This is just how it is......."SINGLE  DUDE WITH CANCER"

What being single through all of this has meant for me is .....not only am I the PATIENT , but I am also the PRIMARY CAREGIVER.
When I shit or puke the bed in the middle of the night, once the episode passes and I clean myself is me that has to strip the bed and do the laundry.
When I go into the ER I have to make sure they don't overdue it with pain meds/sedation ...I have to be lucid  enough to tell my one else knows all the details....I am the only one that knows my medication regimen, when I last took what, when I last puked, when my last chemo was etc etc etc....

Except when Amy was here in the beginning , every night I have spent in the hospital I have spent alone.

It is me that battles with the state and federal systems trying to get what I need...what I deserve.

When I get sick and am scared knowing I need to be rushed to the ER , I have to hold my shit together long enough to get down the "phone tree" till can find someone to get me to where I need to be.

Again I know I have tons of folks I can call that would be at my side at a moments notice....but the reality is everyone has lives of there, significant others, jobs etc etc.....their OWN LIVES.

It is a humbling experience to realize that although you are surrounded by so much love and the end of the day you are NO ONES #1 PRIORITY.

I have had to for some time sit back and watch my life, my world be taken away from me and replaced with this cancer......the cancer is there when I wake in the morning and its still there when I go to bed at night.
Some-days the cancer is all consuming....some nights it's all I can dream about.
It's the only constant I have had in my life the past 5 months.....I try not to let it define me....but sometimes its all I have ......
There have been times when I have been so sick I did not want anyone to see me that way...."weak" "needy"...I assume full responsibility for not letting others in at that is not (I know now) mentally healthy to lock myself in the house for days at a time because I am unable to ask others for is also not fair of me to feel down when others don't just "show up" knowing I need help without me asking for help.
"Asking for help"...."admitting weaknesses"......"depending on others".....
Thoughts and ideas that were all very foreign to me pre-cancer and the hardest of all the lessons I have had to learn.
I have been blessed with an amazing "run" through my first 6 rounds of chemo....kicking ass right up until round 5 when the nasty pneumonia got me.....
I have not needed someone at my side 24/7 caring for me....but believe  me there are days when I wish more than anything else that I had just that....
Someone who knows me better than anyone else in the world.....someone who will let me cry like a baby, let me act a fool and laugh along with me, someone who will sit quietly in the middle of the night listening to my life stories.......someone who will argue with me.....force me to "give in" when I need help.
But that is not MY REALITY

I have always puffed my chest up at being so independent and able to care for myself .....I THANK YOU ALL for teaching me that is impossible to maintain through out this battle I am fighting.
"It takes a village to raise a child"?????

Through this process some relationships have been strengthened beyond what I imagined capable, others have been damaged beyond what I imagined capable. I  have been blessed to made some amazing new friends, re-connected with so many old friends.

Getting cancer SUCKS ASS BIG TIME......
but at this point right now I would NOT go back and change nutz as it sounds in many many ways getting cancer has been one of the best things that has ever happened to me.
I think I have talked before on this blog of the sometimes feeling like I am alive and attending my own hear the words used to describe me, to truly understand that in my life time I actually have had a positive impact on others lives and I HAVE MADE THE WORLD A BETTER PLACE.
I don't delude myself to think I am a saint by no means....I am just a kid who was a long time ago lucky to be  put on a path that led him to an AMAZING many adventures, so many experiences, mistakes, triumphs.......AN AMAZING LIFE.

I have all of YOU to thank for so much - most of all reminding me how blessed I am to have a life full of so many folks, so many personalities, so many characters, so many memories, so much laughter and love.
I could not have gotten through the past 5 months without all of your support!
The love, the words of encouragement, the hugs (even the Internet kine), the financial support, the love, the home cooked meals, the "cracks upside my head" when I needed them most, the love

Of course having cancer has changed me forever....but changed me in so many many good and positive's not blowing smoke up your ass when I say I know realize what is truly important in life.
What really matters, what deserves my attentions and energies.....

Tomorrow THURSDAY JUNE 21, 2012 ........I will get the results of my PET Scan and CT scan.....
Questions of what is going on with "Bob and the Neils" will be answered....
Am I bet your ass I AM SCARED.....
But as I walk in to get "the news" I will walk in knowing "my army" is behind me supporting me
I will walk in knowing I have an a amazing inner strength that I never before realized I had.
I will walk in knowing that no matter what comes next I can and will handle it....
I will hear what needs to be known, make plans for what needs to be done and walk out of there 
one foot in-front of the other, moving forward .......

This entry looks like total ramblings.....not sure if its the lack of being able to focus my thoughts (chemo brain) or what.....not sure I got the message out I was trying to convey.
I just wanted to give folks a look into something people probably don't give a lot of thought to .....what it is like for someone who is single and living alone going through cancer....NOT A WHINE-FEST and I truly hope it didn't come off as that.
Most of all I wanted to once again thank you all for the lessons you have taught me .....This is my fight, my battle......and I wish I had more that just THANK YOU for joining me on this ride, standing at my side, having my back, lifting me back up when I am down.......making me realize I am not alone in this fight.



Quickie get us all to present day......
Been doing real good handling/dealing with the pains associated with the chemo toxicity. No more on narcotics....still on the anti-seizure meds that are working to help keep the neuro pains down a bit....tweaked all the other meds and am now pretty much just taking what I need, when I need it.
Funny thing, right before the pains in my lower back and legs get real bad I get a "heads-up" warning with my tongue going numb and for sure more aware of the neuropathy to my fingers and lips.

"Chemo-Brain" has been giving me some big kine ass whoopings.....seems its the short term stuffs still that I have so much trouble with. Can not remember names of folks I meet  even a few minutes after I ask for a reminder. 
I know TWICE I saw a commercial for a movie I was interested in seeing, but for the life of me I can not remember the title, who is in it, or even what it's about.....I just know there is some movie out there I want to see........
You should see me at the bank trying to deal with transactions....
I am being taught to play chess.....that's comical !!!
Thankfully most folks around me have been patient with me and haven't seemed too annoyed by my repeated questions.

One day at a time......One foot in front of the other.....
Had a great time camping at Kahana Bay last weekend with Alan, KenG and Moriah.

Was great to "escape" everything for a few days......days spent on the SUP boards cruising up the river, home made camping meals, bonfires on the beach at night. Great conversations, plenty of laughs and new memories........What LIFE is supposed to be about!!!

Cruised at the hospital with Alan for a bit the Tuesday after camping then it was almost a WHOLE WEEK of NO doctors, NO nurses, NO hospitals, NO lab draws, NO..........well I wish I could say 
Thing about having cancer is...... the shit is there first thing when you wake up in the morning and its right there when you lay your head down at matter what you do to "run from it" ......"ignore it" ....."have a day without it" CAN NOT
When packing for camping, make sure you pack your meds
When you pick up that heavy rock your going to use for the campfire don't forget about your port before you rest it on your chest (oh yah that buggah hurt!!)
The cuts on your feet and hands....ohhhhh better watch those close.
Hair seems to be growing back on the head, but still get plenty bald spots in the beard....and whens the goddam hair on my balls going start growing back????
The PAIN.....

But somehow I am learning to get past it, and the periods of not having a "constant reminder" get longer and longer..........
Had a great visit at the house near end of week from some of my favorite little folks Micaiah and Sarai

After my week of "no new medical interventions"......Monday was my Pet Scan/Cat Scan day....

These are being done now to see how the cancers responded to the chemotherapy....
How to put this experience to words.......
Even though I had one of the best friends I will ever know sitting at my side in the waiting area, once your name is called and your headed in your on your own.....for me it was bam right back to 
January 25, 2012.....
standing alone outside the emergency room doors to Castle Hospital ER....knowing that the moment I walked through those doors life would never be the same and feeling so very very alone......
You enter into the COLD room full of a bunch of strangers, smiling, doing their job.....your just another patient passing through (I been on that side of all of this - no biggie)
For the Pet Scan you are injected with a radioactive substance that will target the cancer cells and "light them up" on the scan

The biggest suck ass part of the PET Scan is the pre-scan 1:00pm the day before I could eat nothing but basically just meat with some salt/pepper and nothing to drink but water....the radioactive shit is attracted to the sugars.....
Thankfully I had Alan, KenG and Moriah over for dinner and they were great distractions for me - although there were a few times where I was ready to say "screw it all" and down a handful of Mike and Ikes followed by a big glass of red wine......I didn't.......
Could not have anything to eat after 9:00 pm, just water to drink .....comical at 8:45 when I realize the instructions said I could eat nuts.....horked handfuls and handfuls of almonds in the "final 15 minutes"

Okie...back to the scans.....first its the injection of the radioactive "juice"......kinda messed up that in order to see the cancer that is inside you that have to juice you with a cocktail that makes you "hazardous" to pregnant women for 24-48 hrs.......
You lie still, let the "juice" circulate the system....then its into the ice cold room, put on the table, strapped down like a mummy (good thing I had brought some of my own meds from home to make this all more tolerable) thumbs up from the tech and the table you are lying on slides into that tight tube.....stay in there for about 45 minutes, sliding in and out, wondering why it seems at times to be stopping over certain areas more than others????
"What are you doing down at my pelvis?????? the cancer is in my chest...focus you piece of shit machine"......"did it detect something in my pelvis???" ......"stop looking so long at my head......there's nothing to see, move on"..........and that is how it goes.
Alone, cold, mind racing......
January 25, 2012 the question was "DO I HAVE CANCER"
June 18, 2012 the question "HOW MUCH CANCER DO I STILL HAVE"

CT scan was done.....easy easy had plenty of those in the past five months......and at that point my "morning meds" really kicked in and I cruised right through.

Suck ass thing was that back in January it only took an hour or so for the doctor to walk in and say " You have cancer".......this time around I have to wait three days to get my results.....
Going batshit crazy....yea small kine.....doing what I can to distract myself from all the thoughts.....

"could it all be gone after 6 rounds of chemo"
"the last round of CT's showed it was still there, shrinking but still way it's gone"
"Why did that specialist I spoke with during my last hospitalization have to say....the good thing is that it is showing signs of shrinking ......just no one knows why its shrinking so slow" (yeah that one has stayed with me the past 2 weeks)
"What is radiation going to be like"
"if radiation doesn't finish it off, can I really handle another 6 rounds of chemo"
"who's fucking life is this"
"NO MORE....NO MORE.....NO MORE....."

then there's the flip side
"Whatevah's...I just pushed through 6 rounds of chemo I can handle anything"
"I seen kids with worse than this, pony up push through and come out on top"
"I get so much strength and inspiration from daily messages by survivors that are in my life"
"I asked to die when I was in with my septic pneumonia and it wasn't the right I guess going have to stick around and see how this all plays out."
" I am STRONG....I gotta be a WARRIOR.....gotta do what gotta do"
"one foot in-front of the other"

Thursday will be the "Big Day" another one of those....your life will never be the same after this talk kinda mornings...prepared for it??? how the fuck do I prepare for it....I'd like to drink a bottle of Jaeger and smoke a big fatty......but I won't......


SORRY - thought for sure this entry would be longer, more full of insight and humor....something....but to be honest right about now I don't have a whole's been a hell of a 5 months gone by.....I THANK YOU ALL for all of your continued LOVE, CARING, SUPPORT and GENEROSITY.
I would be lost without all of you.....THANK YOU for the re-living past moments in memories that has put huge smiles on my face and given me full on belly laughs, thank you for allowing me to cry when I need to.....
Sorry I can not be more entertaining this evening
I will for sure let you all know what the results are after I get them on Thursday.


But friendship is precious, not only in the shade, but in the sunshine of life, and thanks to a benevolent arrangement the greater part of life is sunshine.
Thomas Jefferson

Thursday, June 14, 2012

PLEASE DO NOT USE "FRIENDS OF PATRICK DOYLE" ACCOUNT AT FIRST HAWAIIAN BANK FOR GIFTING TO PATRICK. Anyone interested in sending a gift to Patrick, please contact us at Mahalo!

Thursday, June 7, 2012

up's down's and all around' the end I am still not wearing Depends.......

Where to begin......last entry was nite before Chemo Round #6 - "the last Chemo".....infusion although 3 hours late starting went without a problem. "Da Puke Monster" took the day off and I cruised right through....I think it helped tons that my nurse was nice enough to give me a big fatty dose of IV Ativan BEFORE starting the chemo infusions. 
I was feeling crazy fatigued the morning of round #6 and my legs/knees were getting weaker and more painful. That was the morning the nurse realized that my knee caps stay colder than the rest of my legs....seriously colder....just above , below and behind the knee stay nice and warm , just the knee caps stay ice cold (later would realize was a sign of things to come). 
So yeah blew through my chemo infusion like a champ! Small kine nausea and vomiting the day after, but nothing I couldn't handle.....but by Wednesday  the fatigue hit hard, was having trouble supporting my weight on my left leg and right leg wasn't do so good either......gave in and started walking with "The Healing Hakipu'u Walking Stick.
Wasn't so stoked on having to use it, but since it isn't actually a "cane" I came to terms with needing a little support....this stick actually washed up on our boat ramp here in Hakipu'u and has "supported" many of the residents and sometimes visitors to our special home. Seemed okie that I had my turn with it.
The Wednesday after "chemo #6 I went in for my final shot of Neulasta and what would be my last scheduled treatment day in Queens Cancer Clinic, Phase 1 of my treatment PAU and with that came the "right of passage" of ringing The Bell Of Hope - here's the video in case you missed it.

"Celebrated" the day with Alan and Yana by going to the movies......something I haven't done in a long time and hobbling myself around Ward Center going to lunch.....was a good day with GREAT COMPANY

So......."end" of Chemo treatment....what did that mean.....hope, enthusiasm, relief, fear....anticipation....It would now be 5 weeks of waiting and wondering what effects the chemo had on my cancer...we knew in the beginning there was some response in the lymph nodes that some appeared to be "shrinking" "returning to normal".....but now it was just have to sit tight wait and see....PetScan -the one where they inject you with radioactive dyes....YES RADIOACTIVE - so much so you can't be around pregnant women for 48 hours, how's that for messed trying to cure your cancer you actually have to allow radioactive fluid to be injected into your veins....any ways this stuff will go strait to what tumors remain and light them up, this will be followed up with a CT of my neck and chest and then on June 21 I will meet with the Onco and discuss results and what plans are for next step of treatment.......radiation therapy I think is the plan......So yeah was a little hard "celebrating" ....for sure celebrated what would hopefully be the final time chemotherapy had to be infused into my body, but bittersweet the celebration #1 for fear of the Nadir that would hit 7-10 days pau chemo .....#2 knowing that there will still be a lot more treatments to face before I cross that "finish line" and can join the ranks of CANCER SURVIVOR.

Stayed on the walking stick through Thursday....Thursday evening was bittersweet watching Terry and the crew pack up the sailing canoe for ship to Maui in prep for the race to Moloka'i.....knowing I would not be going this year was KILLING ME......but there will always be the next few inter-island races coming up , or next year........still was just one more thing to add to the list of things this goddamned cancer has taken away from me.
So was off the walking stick by Friday, was feeling my strength coming back a bit......Alan and Yana came out Saturday to spend the weekend.....I haven't talked a lot about Alan out of respect that he is far more private than me....real brief ...Alan also has Stage 4 Lymphoma, at age 28 he was diagnosed 2 weeks before me and I was diagnosed on his birthday. He is great friends with someone I work with on Ocean Paddler TV and that is how our paths crossed.
Since meeting we have become great friends and I know at least for me he has been a great support , I can only hope I have been the same. I am surrounded by so many loving caring supportive family and friends, but it is different to spend time talking to someone who is going through close to exactly what I am going through....although please remember each cancer patients journey is different - no two are alike......but for sure on our first time spent together in Hakipu'u it felt like we were speaking our "own language" at times.
Alan is "a few" years younger than me and has re- awoke that younger more curious, little more carefree and daring me.....for that I will forever be anyways Alan and Yana came out to "da country" for the weekend. Was good fun, plenty laughs over dinner good talk stories sitting on the dock and cruising at the house. Sunday we got the SUP boards and took a nice easy paddle up Kahana beautiful up there! Eager to go back!!! Was a good weekend and I was feeling physically, mentally and spiritually stronger.
Sunday evening I had a "episode" .....only way to describe it was like someone had just slipped me a mickey....I was feeling all stoned and out of it for about an passed and when it did I was wiped out....just figured it was my Nadir (yes I use the word again) coming on......had to pass on dinner with friends townside when dropped them off at home.....FRIGGEN HATE missing out on fun times and making new memories because of this fucking cancer!!!!!
Monday was WIPED OUT and spent most of the day sofa surfing/sleeping, pretty sure same for Tuesday....
Tuesday evening was feeling well enough to to get up  and make myself some dinner some pasta and fresh homemade ono!!! right after dinner I had another one of those "episodes" of feeling all stoned and bogged down but this time my vision became blurred and I started to experience this weird prism effects that were blocking my field of vision......lasted about and hour and once passed you know me......I was over it and went to bed....I would later find out this was a migraine.....I have never had migraines in the past and always thought migraine meant big kine headache....but I would soon learn you don't need have the headache to experience a migraine........

Wednesday May 30.........."DA SHIT HIT'S THE FAN VERSION 2.0" 
That morning I woke up to the usual 5:23 AM kittie wake up call....I'll leave the meaning of the 523 for another blog , suffice to say it goes hand in hand with the 241.......interesting though that on the Saturday before Terry told me she felt my 241 was over keeping her and Nakoa up that night.....I thought they were there saying thanks for taking good care of I wonder if they were there trying give them a "heads up" that another shit storm was approaching and I would need them yet once again.......
okie sorry back to the I woke that morning laid in bed and played with Kolohe and `Eleu a bit, when I went to roll over I noticed pain in my back that radiated around my torso....thought "hmmmm odd I musta slept weird or something" got up and the pain wouldn't pass, I was having small kine troubles taking a deep breathe so thought I should go out for my morning walk, you know would help me stretch out and get some fresh air....I am after all rapidly approaching "old man" status....the body don't work the way it used to. ..made it to my little sitting area and realize the pain was worsening, started to head back to the house....when got to the point where I gotta put my slippahs on to walk through the water I realized I was having a hard time getting up from the sand, was >this< close to calling Nakoa or Terry to help get me up and home.....but I managed on my time made it back to the house the pain was continuing to increase and the breathing was getting a little more difficult, I put in a call/pages to my Onco....but as it was his day off was having trouble getting in touch with him. Started to pack my bags to head for the hospital......every cancer patient knows if your headed in for an ER visit pack at least a weeks worth of "necessities" cause it'll be a while before you see home again....started going down the call list for a ride to this point I was a little into panic mode...partly because I couldn't breath also because I was fearing a tumor-lysis situation.......I knew it was "late in the game" for it to occur....but what about any of this journey has been normal???? 
Within about an hour or so the pain became so unrelenting that I couldn't even lift my bags up to get them to the car......On that 0-10 pain scale they ask you about in the hospital I was at a FULL ON 12
Terry came out took one look at me, grabbed hers and my stuff and threw me in her car for the LOOOOONG ride to Queens much pain as I was in writhing in the seat, every bump feeling like another knife stuck into me.......I imagine the ride was 10x worse for Terry, I know on the inside she was freaking out, but she handled like a trooper and got me to the ER......although now she says "never time we call the ambulance".....hopefully there won't be a next time.
Got to the ER, pulled my # ticket, alot like being at the bakery, but once the triage nurse took a look at me I was rapidly moved to the front of the line.........I don't recall a lot about being in the ER, the pain was HORRIBLE felt like I had lava in my chest and knives being stuck through out my position I was put in could I be comfortable......iv's started, labs drawn, EKG done,X-ray's done, on oxygen, on monitors........then they start hitting me with the Morphine....after 38mg of Morphine .......YES I SAID 38 MG and no relief.....folks started to get a little worried (and some I would later find out suspicious of me being a "drug seeker")  Phone call to my sister Amy to give the family a heads up, my wonderful friend Chris (Mama Bear) at my bedside to comfort about going full was about 8 years ago that I met Chris taking care of her son Dusty in the PICU....I think was the first night I was caring for him the boy stood up pissed on my legs and collapsed, full code sitch...freaked the shit outta everybody....he was sick sick sick....but like a true Warrior pulled through and is doing amazing today!! His mom , my friend Chris who has also battled with and beat the shit out of her own cancer, has become and amazing source of strength for me.....I put in the call to her that I was in the ER , scared shitless and no questions asked she was there with in minutes.....I am truly blessed with the "ARMY" I have backing me up.
CT of my head and chest were rule out blood clots, they were ruled admitted to the ER holding unit, ECHO cardiogram was done and that was when they started me on Dilauded......I am a true pantie when it comes to narcotics and the dilauded knocked me on my ASS!!!! I am not so sure it took away the pain as much as it just knocked me would be dilauded every 2-3 hours through the night after that. There was no room on the cancer unity so I was admitted to the BMT (bone marrow transplant unit) SUPER GREAT STAFF OF NURSES ON THAT UNIT~!!!
It was the overnight Dilauded that would lead to a whole lot of "small kine chaos" the next morning the Pain Team came in to eval me, on my Onco's request......I was STONED OUT OF MY MIND......and later when "sobered up" and thought about some of the questions I was being asked ......was when I realized/thought there was folks truly beleiving I was drug seeking.....I guess after a handling a 38mg  of Morphine in a very short time (kinda a lethal dose).....they thought I was more accustomed to the "hard stuffs" later I would find out it was all "protocol/procedure" and a lot of it I mis-construed and took way too personally. I was open and honest during the interview......hell I was stoned out of my mind on Dilauded, anyone that knows me knows put me on any narcotic and I am telling truths about everything!! I did have to own up to taking a few hits of a certain locally grown herb few days prior - whatevahs don't judge...all the cancer patients are doing it - ha ha ha ha.....and it was "prescribed medicinal herb" may not have had my name on the prescription but whatevahs......sad thing is I am truly a "one hit wonder" always have been (ummmm not that I ever tried anything like this before) - One hit and I am pau......probably the only cancer patient who could get medicinal permission and its totally lost on me!!!!
Part of the process of this evaluation to try figure out what was going on included a Psychiatric this point although still tachycardic with hr in 110's-120's buy normotensive and still in 8/10 pain echo and ekg were cleared , CT's showed no clots, new tumors , nothing  more abnormal than my abnormal baseline.
I completely understood LATER after talking with my Onco (after I was super pissed off) why this was done....there are many many patients who hit the point I am at and Anxiety can take over.....causing all sorts of problems.....I have been through A LOT over the past few months  and it would be okie, almost expected that I fall apart and anxiety could creep in an take me over.....but just as I have learned myself (apparently those that know me already knew this) those that have just met me learned I AM STRONG....I am stronger than I ever knew and ever gave myself credit for...... I am handling all of this, that is not to say I don't have my "down days" where I keep the front door shut and don't want visitors, not to say I don't spend plenty time being sad, being angry, being full on pissed off about all of this that has been dumped on me.....that is all a component of this I have not and will not deny those feelings ......I have every right to feel that way sometimes......but THEY - those feeling do not have the right to take me over and rule the way I live....I WILL NOT GIVE THEM THAT POWER!!!!
First round of "psych consult" was the residents....I know it does not sound nice to refer to them as "Tweedle Dee and Tweedle Dum" but if you had been there you would understand....I am so thankful and blessed that one of my closest friends Shawna was at my bedside for the interview.....had it not been for her keeping me in check (she would never hesitate to give me cracks upside the head for acting up - and that one of the things I love most about her) , if it weren't for her being there for sure I woulda had to drop a C-note in the "douche' bag" jar......when it came to questions like "have you been feeling sad" I was all WTF!!! YEA MUTHAF*****R I BEEN FEELING SAD!!! I HAVE CANCER!!!
The "kicker" for me was " have you been having thoughts of hurting (ie:suicidal ideations) yourself.......and I'm all "YEA STOOOPID , I JUST FINISHED 6 ROUNDS OF CHEMO, BEAT THE SHIT OUT OF MY BODY SO THAT NOW I CAN GRAB A ROPE AND HANG MYSELF!!!"
I know they were just doing there "job" and they are "learning".....but seriously, put down your pads with your pre written questions and talk to was when "Tweedle Dum" asked me if I had thoughts of "hurting myself" just 10 minutes after "Tweedle Dee" asked the same question that I knew it was time to end this "interview".......shortly after the Psychiatric Attending came in to do my interview.......I am not going to go into detail of exactly what it was about him that creeped me (and Shawna out) .....he was nice enough....but at this point I am still in pain..... completely over the "q & a game"... completely understand the
"Anxiety component" to all of this.....but was trying to make very clear that it was not like I was up and doing stuff when all this came on ......I had just woken from a very good nite sleep and the pain greeted me upon waking......sorry to burts your bubbles but thats is not an anxiety response....there were no bad dreams it was not a restless nite. blah blah blah.....I think Shawna was picking up on my frustration and BAM stepped up to the plate and gave that man an earful about me....I don't know I have ever been so flattered hearing someone talk about me like that., talk about me as a strong self sufficient man....honestly before all this cancer stuff hit I never thought of myself as more than that scared little unworthy weak boy I have carried on my back all these years....YES "he" is gone FOR GOOD!!
So psych evals pau...still in pain...begged to be off the dilauded.....soooo not a good feeling for me to be out of control of my surrounding and knowing as I am not just the patient but in reality my own primary care giver I needed to be we started playing with all different pain med "recipies"
It was Thursday night/Friday morning at some point I was incontinent of urine while asleep.....basically that means I pissed in my first thought "wholly shit" I musta been real stoned on pain meds...but my nite nurse confirmed that every 2 hours when he "poked his head in to check on me" I awoke...I am stay a light sleeper in the hospital , and add to that I had been up 4 times during the night to piss didn't make any sense.....and it wasn't a ton of piss...just enough to soak my underwear ( thank you Stacy ...I'd be LOST without them) and my pj pants, nothing on the bed.......for sure freaked the shit outta me and when I told the docs they were all small kine puzzled too but never made a big deal outta it........If you have never woken up in you own piss (drunken nites don't count) it is a HORRIBLE EXPERIENCE
Jump to Friday, switched me off of all the IV pain meds and was on all oral pain meds and Lidocaine pain patches to my back. Tweaking this and that to find the right "recipe to keep me pain free, but not "stoned" out my mind.
HUGE plus for me at least .....on Friday Alan had to be admitted for one of his Chemos that requires being inpatient for a few days.....he didn't listen to his voicemails earlier in the day telling him there was no room on the Cancer Unit and to come later so when he showed up at his scheduled time (truth be told in good fashion LATE for his scheduled time) he had to be admitted to the BMT unit.....the same unit I was on and just a few doors down......hard to explain to you how having him there saved my sanity.....and I think maybe my being there save his.....if my room was empty the nurses knew to come looking in his room, same same if they found his room empty........over the weekend he actually taught me to play chess.....something I have wanted to learn my whole life  and just "never got around to it".....he kicks my ass, but I have put him in check once or twice. Just to have him there at that time, distracting me from what was going on, me distracting him.....the laughing, the playing with the staff, the introducing and sharing of of all the talks and moments when all "guards were let down" .....really meant the world to me and I will forever be thankful that "the powers that be" brought us together.
So it was Saturday morning.....I was cruising in Alan's room when my docs came looking for me.....we took the walk back to my room to "talk" as if there was anything they couldn't say infront of Alan but whatevahs ....I get was some where between leaving Alan's room and getting to mines .....not too far away that I seemed to have become incontinent of stool......for those non-medical folks this means I SHIT MY PANTS.....thing is I never felt anything, it wasn't like a massive shart or anything like that.......we got back to my room I sat down and realize something was sooooo  not right......(once again THANK YOU Stacy for my underwears....pre chemo I was all commando ......I can not imagine what that would have been like)
So yah I sat down and was all "ummmmm excuse me I don't mean to interrupt , but I think I SHIT MY PANTS"......went into the bathroom for verification and yah there it was......funny thing when I asked the docs if the wanted to take a look see they were all "FUCK NO!!!".......
So it was the pissing myself a few nites before, now the shitting myself  without knowing it happened and  the pain that seemed to be settling in my lower back/spine that prompted a "STAT" MRI.....concerns were tumor involvement in/around the spine........happy to say there was none of that.......seems the neuro-toxicity from the Vincrisitine....same thing that caused the numbeness in my fingers, lips and tip of my tounge, decided to start playing games with the nerves coming off my spine.......GOOD TIMES HUH?!?!?
FINALLY the puzzle pieces began to fit together was talking with the "Pain Team Nurse" that I realized right before the pain in my back spine got real bad I was getting warnings with my tongue going numb minutes earlier......crazy shit the way the body works.......
Had plenty visitors come by to shower love support and offense to any of you all but my favorite was my nephew Micaiah 
NO ONE has ever had the ability to make me smile and laugh the way my "lil' shadow does"- I was so beyond thankful for his being there lifting my spirits , making me laugh and leaving all of the staff of the unit with big smiles.

So.....DISCHARGE TO HOME ON SUNDAY...."DISCHARGE TO HOME" at least for me...but this time I will go out on a limb and speak for other cancer patients are 3 of the most precious words we here.
My discharge stared at 1:00 pm I was finally out by 9:00 docs were nice enough to facilitate my getting a 30 day supply of my necessary new meds from the inpatient pharmacy...this would take over 3 hours....around the end of the 3 hours the pharmacy called to inform me that my health coverarge (state coverage) HMSA/Medquest had been cancelled....and I would have to foot the $385 for my meds in order to go home.....I learned a long while back not to let this shit get to me, but this time it did....ontop of everything I rite away was nailed with a massive stress headache, told the nurse to get what ever the fuck they had ordered for PRN (as neeeded) anxiety relief and Load my ass up......I was going face down in the pillow , tears flowing hard.......after the fight months ago to get any sort of coverage and to once again be "kicked while down" was too much to take.....I gave in told them just get my meds I would agree to pay....just let me ass outta here!!!! At that point it was total "Alan to the rescue" there's no cry babies shit, no feeling bad for your up , went his room, crawled into the guest sleeper chair and started watching Transformers.....interrupted plenty time to talk, play chess moves etc I said earlier, so blessed our paths crossed.....even the nurses had us nurse didn't like how uncomfortable I looked in the chair so went to my room to get my pillows, especially my special posturpedic fa fa pillow (Mahalos David K and Deedee - I havn't gone to hospital without it) the nurses even delivered  my meds to me in A's room and brought me much lunch tray......yah whatevahs the two of us WERE SPOILED AND DAMN WE DESERVE IT.
I finally got my "walking papers" by about 9:00 pm - so thankful to Rudy for coming back over to pick my lame ass up.....Steph and Rudy had been waiting to take me home until they heard the whole 3 hour wait from Pharmacy at that point I was all .......go home.....Love you guys but I dont have it in  me to entertain anyone for 3 hours and I could see from the looks on their faces the thought of 3 hours sitting in the shitty hospital was not the way they intended to end their amazing "Waikiki Weekend Stay-cation"
I did feel bad leaving Alan there ....but the good news was he broke the last MTX discharge time and was out the next day.
So......I been home.......working on balancing the pain pills ack - trying get off as many as possible .....the whole label of "DO NOT DRINK ALCOHOL WHILE ON THIS MEDICATION" is incentive enough!!! You know I likey my glasss (or 2 or 3 of wine in the evening) but managing.....seems the pains like to find a different area to go after, last two days was all about my knees ankles and feet. My great close friend Kolea picked me up for lunch yesterday, I was not too happy when she pointed out the 1+ pitting edema around my ankles or what she thought was foot drop.....I am not buying into it!!! After a ONO-LISCIOUS  lunch at Dean's Drive Inn in Kaneohe....if you never been you gotta go ......the "surf and turf" fish and beef.....unreal !!! can not wait to go back for the ahi crab cakes but made with ahi...... mmmmmm!!!! Well it was after lunch, full opu , ready for a kanak attack and on pain meds that I will forever maintain she BAMBOOOZLED  me into the nail salon for a pedicure>
Needless to say I thought they were going to pull the power sander from the back.......and NO she is not wearing a face mask because I get stink feet.....all of the nail ladies had the masks on (and with the coughing going on behind my nail ladies mask I was thankful she had it on!!!! Love you Kolea for yet introducing me to another "first in life".... anyone know the secret to make my big toes stop looking so shiny???? NO I did not get nail polish!!! HA HA HA!!!!

So I am back home where I belong...."on the mend".....took my sunrise walk yesterday and made it a hell of a lot further than expected........
felt great, the sun, the wind, the sand.....the being alive and present in the moment.......

Got the great news that my brother Scott and his wife Jarah had their  5th child .......
Luca Abrahm Otto Vycital 8lb 12 oz baby boy 
mom and baby are doing great....this Uncle  is frustrated that flights to Colorado are well over $1000 
So stoked for them and soon I will be there to spend time soaking in the love of all my nephews and nieces

For now it is just time to take it easy at home, let my body heal from what it has been through and get my strength up for Phase 2......
I know how excited so many of you were to hear that in the chest CT that was done when I was in this past week it showed "shrinkage" of tumors....don't get me wrong ....I am stoked to hear the word "shrinkage"...but not as stoked as I would be to hear gone......
The RAW TRUTH is that "shrinkage" means the tumors are still there in my chest despite 6 rounds of chemo.....I am not "out of the woods" yet......I kinda figure I am at the half way point of crossing through hell
What I do know is ....something I never realize before.....I am STRONG.....I had a hard time when folks started "throwing around" the term 
But now I have come to embrace that and welcome that label....I am a WARRIOR  and I will fight this cancer.....there is no doubt in my mind, with AMRY behind me, my special angels at my day I too will cross that finish line so many have crossed before me and I too will proudly wear the label

As always I have thank all of you for your loving, caring, support, generosity, kind words etc etc etc without you all I would NOT be where I am today

This week my heart was broken when I learned of the cancer diagnosis of 3 very special people to me
One just a child...diagnosed with LCH .....she part of my hanai family ....a beautiful spirited little girl with an amazing family that have been so kind to me in my time of need, I can only hope to pay forward the love they have shown me now in there time of need
A wonderful friend and someone who is like a brother to me who was diagnosed with Melanoma - still waiting for final test results to know if stage 2 or stage 3
and today I learned that someone so near and dear to my heart....someone who helped make sense of all of this when I first was diagnosed, she helped "get me on track"  I referred to her in earlier blogs as my "Hawaiian Fairy Godmother" now battling cancer .....we "bumped into" each other at the farmers market today and I have barely been able to stop the salt water from leaking out my eyes since.

I can only hope and wish that in the end for all of them , they will be blessed with the lessons I have learned this far , of the amazing and sometime overwhelming generosity of others- family, friends, stangers......know that already the generosity and love that you have all shown me is being paid forward to the three as it will be to others for the rest of the time I have left here in this reality we are sharing.

"A tramp, a gentleman, a poet, a dreamer, a lonely fellow, always hopeful of romance and adventure" ~Charlie Chaplin

P.S. stay tuned for how you can get your very own Patrick >Bob Tee's and Wristbands available for purchase on this blog

And the announcement of the the date time and place for the postponed PATRICK >bob Fundraiser/Benefit my family and friends are putting on.
Mahalo nui Gonzo for this logo .....I LOVE IT