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