Sunday, June 2, 2013

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

Where to begin this update........I have written and re-written this in my head a thousand times....not remembering what I had written in my last blog entry what I have been going over and over in my head to begin this is exactly what I had already written......amazing that I have no recollection of writing that last blog entry.....
So, I guess it's best to pick up where I "left off" and see where this all goes....
I truly wish I could say that a magic wand was waved and boom I was back to life...
Unfortunately that hasn't been the case.

Following my last blog entry I continued to be overwhelmed with constant EXHAUSTION....November through January found me most days sleeping 10-12 hours a night, waking in the morning for 2-4 hours before napping the day away, waking in the evening for dinner then back to bed a couple of hours later.
The sleeping so much brought on the questions about depression and I completely understood why I was being questioned about this. I was called out on it by close friends who were concerned as well as my Oncologist and my primary MD.
Although still denying to everyone I was "depressed" I did agree (much to my dislike) to go on anti-depressants per my primary MD a "band-aid" to help get me "over the hump".
There was no change after starting the anti-depressants...that I was aware the time of starting them like I said I still denied to everyone that I thought I was depressed, at the same time placating with an answer that "although I wasn't depressed, I could see how I was teetering on sliding down that dark hole"......
You know me, and you know many times in my past I have allowed my pride to get in my way. I am not sure what it was about the "stigma" of depression that made me think if I "owned up to it" it would be a sign of weakness.........
(there I said it)
NOT "suicidal" but in a state of mourning and feeling overwhelmed.
FRUSTRATED and ANGRY about not having the energy to get out and enjoy life the way I wanted too...
Sad when I looked in the mirror to see the effects the cancer and treatments had on my body.....years of being active, going to the gym etc etc etc and all that muscle wiped away....the "moon face" from the steroids, the gut, the skinny arms and legs.....I know all just vanity.....but you know I have always had a false sense of pride in  my physical appearance.
Frustrated that during treatments I had the energy to hike 6 miles out in the dark across the flowing lava fields of Kilauea - and show up the following day back on O'ahu for radiation. 
Being able to get on my SUP board and paddle.....being able to grab a tow line behind the boad and skurf on my longboard.....hell I lost the energy (and truth be told at times the will) to get up in the mornings and go for the sunrise walks that gave me so much clarity and strength during treatments.

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

When I returned I was feeling more pressure and pain in my chest ....just constantly made an appointment to go see my Oncologist earlier than scheduled in January.
That was an eventful appointment!!!
On checking it at the cancer center they checked my vital signs and when I looked over and saw my heart rate on the monitor was hovering between 190-200 beats a minute, in my true smart ass nature I told them their machine was malfunctioning.....further checking confirmed that was my heart rate and my blood pressure was 190's/100's.......yet I was completely asymptomatic ....calmly talking....completely unaware that this was happening......
I guess a "sane" or "normal" patient would have agreed to go to the ER ...but all I could think was NO WAY AM I GETTING ADMITTED TO THIS HOSPITAL AGAIN!!!! ( I hesitated to use the phrase "over my dead body" ha ha ha ha ha ha !!!!!)
Instead I grabbed on of my Nitroglycerin tabs...popped it under my tongue and crossed my fingers.......luckily it worked and my heart rate and B/P came down to "my normal".....I haven't seen "text book normal" in a LONG TIME!!!
So thought was that this could be potentially adding to my exhaustion....if my heart could be beating so fast without me knowing it and increasing my oxygen consumption this in turn could be adding to my fatigue.....
I did follow up with my cardiologist and seems we got a handle on my "cardiac issues" with the addition of 3 more pills a day to my already overwhelming daily pill intake......again the cardiologist reiterated  that his experience was that it would be 12- 18 months before my heart "repaired itself".

So back to the day of the Onco appointment in January, prior to the appointment I had gone in for a CT scan....the results showed I did still have 3 remaining masses in the center of my chest each of which had shrunk a bit from the previous scan and showed I continued to have "no evidence of active disease".
GOOD NEWS!!! (insert big sigh of relief!!)
My Oncologist at this point also voiced concerns about my "mental well being" and asked that I go see a psychiatrist .....I agreed to do so....
Funny, it took well over a month to get an appointment to see someone.....and no one found me amusing when I asked "if I say I have the rope around my neck right now, can I get an appointment sooner" ha ha ha ha ha!!!!!!
I went and saw the shrink and he felt I was not depressed and given my circumstances I was "dealing appropriatley".......END OF THAT!

At the same follow up with the Onco, I had my first (and so far only) scheduled appointment with the "Survivor Program Doctor".....I didn't even know they existed and was kinda amazed that the didn't schedule to see me until months after I was deemed in remission........
Craziest thing about talking with him and explaining how I had been feeling over the past few months was that he said  "it was all perfectly normal" and that I was in many ways "putting unfair expectations on my self" regarding where I should be physically. He felt that given everything my body had been put through, everything I was experiencing was not uncommon.
Would have been a hell of a lot easier had I been given an appointment with them when I went into remission - was given at least a glimpse into what might be expected.
I think I mentioned in my last entry that although I have spent so much time around my patients with cancer the whole "world of remission" is foreign territory for me.
I continue to be so grateful for the emails, letters and phone calls from all of you that have entered into this world of remission prior to me. Relaying your experiences to me makes me feel "less crazy" and gives me the strength and courage to continue to move forward.
It is interesting, in all of the conversations I have had and all of the reading I have done, how different folks use different terminologies to describe this time of being in "remission"........
Terms like "remission" "survivor" NED (no evidence of disease)" etc etc etc.
For each it is different, and as I have said many times in these blog entries I do not look to speak for all cancer patients...this is my story and all I can do it to relay my experiences to you.
"CURED" does not become reality until 5 years after entering into "SURVIVOR" has been a bit of a difficult term for me to wrap my head around.
Looking to find the right "label" for this period of what feel like limbo to me .....I came across a term Olivia Newton-John uses to describe herself as a post breast cancer patient awaiting the day she hears "CURED"
That term is "CANCER THRIVER"
For some reason this resonated in me upon first hearing it......
THRIVE: (verb) 1. to prosper, be fortunate or successful  ; 2. to grow or develop vigorously; flourish

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

Am I Superman - NO
Can I be a strong warrior going to battle everyday - NO
I am human
There are days when the tears flow that I think they will never stop.
There are days when the frustration of my physical limitations are overwhelming.
There are days when the fear of relapsing are paralyzing.
I am human....this is my reality.
BUT this does not and will not define me.
As time goes on the days are less and less
As time goes on the fear is less, the overwhelming feelings not lasting as long.
I have to own them, acknowledge them, learn from them and most of all move on from them.
I am human.

There have been many many good times over the past months.
Holidays, birthdays, weddings, engagements, births, graduations etc etc - all of which hold so much more meaning than ever before.
There have been events I have had to miss out on due to just being exhausted and not having the energy that day to be a part of....I hope that my not being present has not hurt anyone's feelings - I am doing the best with what I got right now.

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

There have been great times of just being with friends and family for not other reason than to just enjoy each others company and form new wonderful memories.
So, where am I at right now.........

Physically - after a few months of feeling stronger and on the mend the last few weeks I have found myself more and more fatigued again.
It's nothing for me to again be awake for 3-4 hours in the morning before my body just plain shuts down and I find myself napping on the sofa for 3-4 hours, then not having any problems going back to bed a few hours later and sleeping a full 10 hours.
Not sure what it is, best way to describe it is that I wake up most mornings lately feeling like I have a hangover and feeling that way through out the day....functional but stunted.
I have been off all of my narcotic pain killers for months now and have weaned myself off of my nighttime dose of Valium........was a rude awakening when I decided to stop the Valium "cold turkey" after being on it for a year.....only took 2 days before the withdrawing hit me and knocked me on my ass.....
I have done plenty of research on all of the meds I am currently taking to see if the fatigue I am experiencing now could be caused by any mixes of what I am taking - nothing shows this to be the case.
Here's what my daily regimen of "post -treatment meds" looks like:
That's a whole lot of pills for a guy who doesn't like to take any medications......
Working to get off of everything, researching natural alternatives, its a SLOW process!!!

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

About 2 weeks ago I found myself choking on some chips that I had put in my chili.....scary for me as this was one of the first things I noticed prior to my being diagnosed. I continue to feel like my esophagus is narrowed and having some troubles swallowing (keep the jokes to a minimum)
I will be going in for a swallow study in the next week or so to try and figure out what is going on.
The pain in my chest with exertion or deep breaths is just "what it is"  - hasn't gotten any better or any worse....just learning to "live with it"
Oddly enough (but given my previous track record par for the course) the morning of my follow up with my Oncologist last week I did notice while showering what I thought to be an enlarged node on the right side of my neck. I had him examine it, he felt it, but did not seem overly concerned . We are "keeping and eye on it" and I have been downgraded from every 3 month follow ups back to once a month.
There's that "paralyzing fear of relapse" I mentioned. 
As of today......I think it may be a bit bigger than was a week ago, but not so much that I am going to push for earlier follow up.
Lets get the swallow study done first then move on from there.

Something that everyone including my Oncologist finds very "strange"......not sure if I mentioned it but at some point about a year prior to my diagnosis I began to develop patches in my beard where the hair started growing.....If I went 2-3 days without shaving it looked as if I had been trying to shave Polynesian designs into my beard. Researching it I found it is called "Alopecia  Barbarae" a not uncommon occurrence that is thought to be an auto immune disorder, no real treatment for it - other than some online gels for sale that all seemed like a scam to me. 
I had mentioned it to my Onco early on in my diagnosis/treatment but he claimed to have never heard of it a a "pre-curser" to lymphoma, nor did any of the research I did.
Well, a little over a month ago I realized the hair is growing again and the bald patches are no more.
Again, I can not find any research linking to two....but will always be suspicious of a possible link.
Just happy that I no longer am having to shave at least every 2 days!!!

I still get exhausted pretty easily with physical exertion, but am just dealing with it and pushing through. Hoping I can get to a point when I can begin work outs to help shed some of the fat I have put on and regain some of the muscle mass that was lost (yes me being vain)
I still experience the neuropathy, especially when I am tired. I know my body is "shutting down" and its time to sleep when my hands and fingers start to feel like I have tingling gloves on (a lot like if you ever experienced your feet going to sleep) seems my hands go to sleep right before I need to.
I also found when I spend a lot of time in a hot shower my butt and lower back gets the same tingly I have refrained from trying to wean off the meds I am on to treat that.

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

Mentally, most days I do not feel depressed some days I am "sad" or rather frustrated by my continued fatigue and the need for naps.......most days its an overwhelming frustration continuing to battle with finances.
The hospital bills that were so easy to "laugh off" while I "had cancer" are now an overwhelming to pay off $100,000.00 in hospital bills??????
I have heard talk of being able to claim medical bankruptcy but have yet to investigate how to do that if it is a reality, as my energies are still focused on my battle with the federal government and receiving my Social Security Disability Benefits.......the guidelines say as taxpayers paying into Social Security that we are eligible for this if disabled from work for a year or more. 
It has been over a year since I filed, I did receive a denial about 9 months ago, as everyone told me I would. At which time an appeal was filed for me on behalf of Legal Aid Society Of Hawaii.....and folks at Social Security continue to not approve me.....continuing to send me page after page of questionnaires about my physical wellness, my current treatments, my fatigue etc etc one point saying they couldn't "move forward" as they were "unable to get my medical records from the hospital".....when my lawyer and I pointed out that the denial I received, according to them was based on my  medical records they were pretty quick to "back track" and poof my they were "allowed access to my records" .
The newest "hoop" I had to "jump through" was SSDI sending me to see a shrink!! 
I wasn't claiming disability because I was crazy or depressed or had any mental issues.....
My lawyer again said this was just more crap they would send at me in hopes I would just give up on my claim.
The shrink even questioned why they had me see him.
Shittiest thing of that is guess who pays the bill for the shrink visit......THE TAX PAYERS......bullshit waste of financial resources the government claims they are short on.
I am tired and frustrated having to play this game...but I WILL NOT GIVE UP!!
I guess myself naive all these years thinking that we pay into "the system" so that should something happen that same "system" is there as a safety net to assist when we need it.......foolish me!!!


So hopefully I have been able to catch you all up on what has been going on and where I am at right now.
Again I apologize for taking so long to get to this blog......the question of whats going on had gotten so much that it kept me thinking of that loud ass '80s song What's Going On by 4 Non Blondes!!!

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

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

I didn't know what this blog was going to be when it started.....I still don't even recall starting it. 
Other than skimming the past entry I have never read what I have written......It all just spews out of me and onto here......someday (I think at my 5 year mark) I will go to the beginning and read it.
Again, I never intended for this to serve as a platform for me to be any kind of voice for everyone who experiences cancer......this is just my many ways this has been a therapeutic way for me to get through the past year.
I have been very surprised and yet again humbled by so many folks that have come to me with compliments on what I have done here. Telling me it helped them in some way with their own personal battle with cancer, or for some who said they gained some insight into what a loved one is or was going through in their battle.
If anything I have written over the past year has touched or helped even one person, it was never my intent, but I will forever be grateful and feel blessed that my rants and ramblings could accomplish that.


As always: