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

1 comment:

  1. You are a warrior, wear that name proudly! Go uncle, you can do it, we believe in you!!!!!!! Sending you lots of love.