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Wednesday, October 3, 2012

What's going on........


Hard to believe almost an entire month has gone by since my last blog.......I apologize to my "fan club" (thanks Carrie ) and to everyone who has been wondering what has been going on.

That seems to be the theme of the past month for me....."WHAT IS GOING ON"......I guess I should have never started whining about "what I was going to do with myself for the 3 months between the last radiation and my follow up scans"......the time passing has been anything but uneventful......
Last blog entry was all about the new onset "cardiac issues" I have been facing......
I continued feeling beyond fatigued, sleeping up to 18 hours some days.....usually after putting on my "healthy face" and heading to an outing or meeting up with friends......
Had my follow up visits with my radiation oncologist....she tried to assure me that the radiation, although causing the burns to the linings of my lungs did not do anything to my heart. Me with my oncologist the same day....once again we sat staring at each other scratching our heads in wonderment over just what the hell my body was doing......typically if there is going to be damage to the heart secondary to chemo, is "typically" shows up sooner rather than later......
I am still pretty sure there was damage done by the chemo that was exacerbated by the radiation....but I guess we will just never know......like we said "add it to my atypical list that started day 1 and seems to continue to be growing.
I was remaining "stable" with lower blood pressures and increased heart rates and the pain continued.....actually got worse.
By September 25 I could barely take a semi deep breath without feeling as if someone had just "Pulled A Buffy" (how I decided to describe the pain when asked) and stuck a stake in my chest like a I was a vampire. 
Luckily this was the same day I had a follow up appointment with my cardiologist, we opted for a challenge/test for lack of better description and did a one week high dose steroid pulse in hopes of decreasing some of the inflammation which would hopefully help with the pain ....meaning I started out on oral steroids at a high dose for 2 days, cut the dose in half for next 2 days and continued like that for 8 days.
In 24 hours the pain went from being almost unbearable and me popping oxycodone like they were candy, to far more bearable and almost unnoticeable except with a lot of exertion.....what a RELIEF !
I was feeling like "myself" again...had the added bonus of the "false feelings of wellness and increased energy" high dose steroids will give you....was up with the sun for my walks again....things were looking up.
By just about the end of the steroid pulse the pain was starting to return........I found myself in bed the past few days trying to decipher was the pain emanating from my heart, the burns in my lungs or could the tumors in my chest be growing at a rapid rate like they did in January........
Yes....best described as a TOTAL MIND FUCK!!!!
What the hell is happening inside of me?!?!?!
Today I am back to feeling like someone "Pulled A Buffy" with each deep breath, not up until about 8 am then struggling to stay awake and not nap by noon.....(I usually fail and the napping usually takes over)
Had a follow up with the cardiologist yesterday.....he brought up the possibility of staying on continuous steroids.....something I am TOTALLY AGAINST...for many reasons ....and I am pretty sure my oncologist will agree.....we will discuss at our next follow up appointment.
Do not want to keep trying to manage the pain with NSAID's and wind up with my stomach all tore up....so for now I guess it will be rest and my good friend  oxycodone.......
I keep getting "advice" from folks about how taking so much can be so "bad"......
reality is DEPENDECY vs ADDICTION
Am I becoming "dependent" on them......HELL YEAH....I am in pain and they make the pain better ...
Am I addicted?? HELL NO!!!! I love having a day go by and realizing I didn't take any narcotics....
There are other means on anti-inflamatory herbal treatments I am also taking....was religious with my juiced olena, but my source ran out ....so now switched to turmeric either in tea form or pill/powder form.
One day at a time....one foot in front of the other........
So September was the month of what the hell is going on.....by end of October questions should hopefully be answered.
At last onco appointment we opted not to wait until November to do my follow up scans....so between that and my cardiac tests October is going to be a busy month....
Oct 9: CT Angiogram with Calcium score to check my heart for coronary artery disease
Oct 12: Follow up Echocardiogram -show us how well my heart is functioning and what the status of my pericardial effusion is
Oct 16: Full Body PETscan and CT scan to see how the cancer responded to the radiation.

OCT 22: "DA BIG DAY"....follow up appointments to review results of all my scans....

So much for worrying about being "bored" huh????


So yeah that is what's been happening physically .......
Mentally it has been a roller coaster.....somedays the depression is overwhelming.....a song, a picture, a quote can send me in to a loooong bought of crying. There are those days where I do want to just "throw in the towel" ...."wave my white flag"....say "enough is enough".......
Luckily those days/moments are short lived and I can usually pull myself up...or there is someone around to give me the swift kick in the ass I need......

The past month hasn't been all "DOOM AND GLOOM"
There have been plenty of highlights and good news.....
One of the biggest highlights for me was Sept 11 when Alan was told the his scans show he is in remission, there is no detectable cancer in his body
Alan and me making our "suck it cancer" toast...

"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.....NOTbeing a "big downer".....just stating the facts and I think something important for folks to be educated about when they hear the term remission.

Was I completely STOKED when I heard the doctors tell Alan he was in remission HELL YEAH!!! I was holding back the tears like a big pantie....HELL YEAH!!!!
Am I looking forward to hearing the word remission on October 22 at my follow up.....HELL YEAH!!!!
But again remember "remission" is a tricky word and for those of us for whom it becomes reality.....I think the "cancer reality" is ever present, lurking in the shadows.....
Does the feeIing of the "grim reaper hiding in the shadows" during treatment get replaced by "cancer lurking in the shadows" during remission????? I would love to talk to some long term survivors to hear how long the feelings are there.....does it get easier with each negative scan??? 

Another highlight of September was the Honolulu Cure Search Walk To Benefit Children's Cancer Research 

I was honored and humbled to give a testimonial at the walk......took a long time to get the words out and on paper in some sort of make sense way......to be honest I was rewriting the whole thing in a panic sitting in the parking lot the morning of the walk......I think most have seen it but in case you missed it and are interested here is the link to the testimonial......
Thank you Rudy for capturing it on video (NO I have NOT watched it myself!!)

Was a day of very mixed emotions that day and in the weeks leading up to it. Writing the testimonial and deciding what to talk about took  me to many places and many memories I haven't visited in a long time....the going down the list of patients I have known that are dead, the list of patients I have known that are living ....both lists inspiring me equally.......how did my life get here???
I used to go and listen to kids and parents give testimonials.....never imagined I would be giving one as someone with cancer myself......
LOVED seeing so many of my good friends there to show support for the walk and give me the little bit of added  courage needed to get up and speak to the crowd..


(Mahalo to Stephanie, Natalie and Dianne for the pics)

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A few days after the walk was another bonus of good times in September when my great friend Nick, who I haven't seen in almost 20 years arrived in Hawai'i for a visit

 Before
and AFTER.....

Had a great time catching up.....plenty of laughs reliving memories of long time ago!!! 
Got to take him to most every corner of O'ahu...even if I was running on low battery "old man status"...no hiking, no surfing, no sup'ing .....but still plenty of fun.
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October = Breast Cancer Awareness Month
Bittersweet that a week ago my dear sweet beautiful friend Lisa was diagnosed with breast cancer.......I can't even type it with out the tears flowing and the anger taking over me........I can not say it enough or loud enough how FUCKING SICK AND TIRED I AM OF ALL THIS CANCER !!!
A fellow nurse who has dedicated her life to caring for others. Our paths have crisscrossed over the years, Chicago, Aspen and then Hawai'i......Although no longer in Hawai'i YOU ARE NEVER FAR FROM MY THOUGHTS LISA.

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So that's been the ups and downs and all arounds for the past month.......
"can someone stop this ride I wanna get OFF!!!!"

I promise the next blog will be all about the benefit/fundraiser and trying to share the moments and crazy amounts of love that went on at that event...for sure deserves a blog entry of its own!!!
For those that asked we have figured out a way to make the canvas prints of my photography that were in the silent auction, available to you.
Also, there are still Patrick>Bob T-shirts left in most sizes, but going fast. You can still order them by clicking on the link to the right of this blog ....please enter the size(s) you would like in the comments/directions section when ordering.

I know I am also still very far behind on acknowledgements  mahalos, thank yous and phone calls!!! I will at some point get to all of you!!!
I continued to be blown away and as always thankful for  all for your continued love, caring, support and generosity!!

LOTS OF PEACE LOVE AND ALOHA TO YOU ALL

(ps if you don't comment I won't know you were here)



4 comments:

  1. remission sounds beautiful to me :) celebrate whenever and whatever you can. My family is a big believer in any reason for a party. birthday, anniversary, Christmas, graduation, promotion, happy day, whatever. Candace and I were talking about having a wine party in January, "because we can" ;p we had so much fun at my last one.... happy thoughts and energy! <3 T

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  2. Ditto on the celebrate whenever. We sometimes open a bottle of champagne on a Tuesday just to celebrate it's almost Wednesday!

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  3. I am here! and I am always thinking of you. You are inspiring. You are doing the best you can, and that's all you can do. love you

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  4. Patrick,
    I have been chanting, burning, praying for you every Fridays. I have been traveling since we last met. And I still make it a point to go to temple on Fridays. You have been on my mind for the last 40 days. I wanted to see how you were doing and I finally realize to check your blog.
    I will tell the priestess to add on another 5 weeks for you. I will continue to chant, burn, clear and pray for you. Instead of Fridays, I will see if Mondays or Wednesdays will work for them.
    You are always in my thoughts and in my prayers!
    Sending you blessings of my strength, inner peace from the goddess of mercy and light to give you the sight in the right direction!
    Nikolai

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