Friday, April 18, 2014

That's All Folks!!!!

Although I will update after my follow up next month on the mysterious mass.........I'm done here for the most part again and the daily updates are going away thank goodness.  As I told my Aunt when she was in town a few months back when she asked why I didn't post here much, I reminder her that was a good thing.   I never created this blog as a journal of my life and the majority of what is here I wouldn't wish on anyone but this latest scare deserved and required me to be here but as we found yesterday, my writing talents, or lack there of, are no longer needed!

Once again, it never ceases to amaze me who comes out of the woodwork in support at times like this.  Some you don't even expect and even in this limited setback, I am so grateful to you.  Much as I try to blow it all off as no big deal, that strength comes from the words of encouragement and support from you and are so desperately needed.  I said to a friend the other day that it is a very lonely feeling as I'm the only one who ultimately has to deal with the dreaded train and realization of my own mortality as I deal with the truly awful memories of what could be if this went wrong, so the support from my family and friends old and new is priceless-THANK YOU

I for one finally got a good night's rest and see a great weekend of yacht racing, a dear friends return home party and cooking up our Annual Easter lamb -can't tell you how grateful I am to know one can do that-Happy Easter to all!!!

Thursday, April 17, 2014

Thank God! It's over with a green light as a False Alarm!

A frightening, stressful, anxious week is over! I'd prefer not to be subjected to one of these again thank you, but THANK GOD it all turned out to be, relatively speaking, a non event!  I have been pretty much on auto pilot and going through the motions the last few days trying to suppress the whole "what if" scenario as can't even comprehend having to go through anything like 2010 again and right on the heels of Rick, its been a tough suppression.  As always, for the most part (I did vent a little of that and was grateful for that sounding board so as to not hold all inside as that creates even more anxiety-Thank you!!!) I tried to keep up my happy NBD look but the body and brain know better and beat me up.  I hope I can finally now get a decent nights rest without the nightmares as I'm flat out exhausted and I knew my blood pressure was out of whack-more on that to follow.

I got out of bed and had a plan to keep myself busy and not dwell as I had to wait until my appointment at 3.  I was quite successful right up to the point I made a delivery to Diamond Head Memorial Park.  Today was also the service for a gal that used to work for us at ALOHA Magazine that recently passed away and there was simply no way we could make the service yet as a family and company we had to be represented.  With it being Easter, Pam found we had to have an arrangement made so in the essence of time, I decided it be part of my keep myself busy plan to  pick up and deliver-BAD IDEA as that was not the place for me to be today and I literally broke down.  The general consensus I got was  "Jeff???? Why are you at a cemetery??  GET OUT OF THERE!"  Very good advise as I am anything but fatalistic but not my wisest choice but  my thoughts and prayers go out to Wendy her family and friends-Thank you Lance for putting it all together!

Now the hour approaches for the reading of the tarot cards if you will and as I said going in, I'd like to request the one that says "Just Kidding! Sorry about inflicting all that unnecessary stress and anxiety on you this past week... See you in six months" Please! and essentially that is what happened.

I walk in and of course the brain on overdrive so the fact they took me immediately didn't go unnoticed and odd.  Is this a good sign...or bad? This place is the 800lb Gorilla of Hawaii Oncology and as always, the waiting room is packed.  Even though my Doctor is one of the better of the group about respecting his patient's time, you never get right in.  Again anything out of ordinary....Gulp!  We do skip blood work although did just do last week but the nurse still does vitals.  I've dropped 4 pounds since last week and SHOCKING, my blood pressure is sky high. She is surprised and concerned.  REALLY LADY?  It was elevated last week and you're the one who dismissed as WCS and now, as I'm awaiting these results...your surprised its higher????  It actually is scarily high to be honest :(  She puts me in the room and I can hear her outside telling the Doctor.  He walks in, again odd as nothing ever quick and says "well, guess you heard that and outside of my nurses concerns, that I'm overlooking under the circumstances, although it is high Jeff.....but this should help it come down as the report here says all good!"

OH THANK GOD and can feel the relief for a moment......that's it?  I don't think so as again, known him for some time and there is a look of concern and sure enough he goes right back into exam mode feeling and prodding all around the area of concern on my neck.  I finally ask whats up, you don't believe the path report do you?   No he admits he doesn't as there is certainly a mass there. He wasn't my original Oncologist as many of you may recall my issues with the infamous "Mr. Bill" whom I fired back after my chemo, but in review of my original scan sets back in Jan/Feb of 2010 and his reports, it turns out there was a similar mass here on the left side.  I'm shocked and I can feel the pressure go right back up as I have no recollection of anything on the left, it was just the tumor on my right tonsil and left nasal flange, not left neck?   (I reviewed here as well being my own personal journal and don't see any notation of such either)

So it's back?  Is that what he telling me?

He tells me he assumes the Doctor that wrote the report compared to prior but he hasn't actually "seen" the pictures as for some reason he cant pull up in his office.  He needs to go down to the Dungeon and talk and compare with the Doctor.  WHAT????  This isn't even over.  He promises me he only has one more patient and will go downstairs and call me and to not worry as it may just be scar tissue that has developed post radiation.  Then why never notice before????.  Ahhh shit...more waiting...more questions.  He assures me he feels I'm fine based on the report BUT he needs to do this and still may send me for a PET scan if he has any doubts but to get out of here, go to beach (he knows my passion of the Ocean) and he'll call me by 6.

UUGGHHHH!  I walk out trying to convince myself this is good news and I've at least dropped the threat level from red to yellow...I WANT GREEN!

True to his word.I didn't even get to the club and my phone rings.  He concurs 100% with the path report and gives me that green all clear light!  WOO HOO!

He does hedge a bit that there is something there obviously BUT as it is in no way a cancer, its isn't a concern.  Not to say it will be ignored but he knows I see the ENT in a few weeks and will brief her and he does want me back in a month to follow up.


Swim, sunset, family and friends for the rest of my day and can feel the stress escaping from the body.  Who knew decompressing could be so exhausting???  I'm going to bed!

Tuesday, April 15, 2014

More anxiety as....... we wait!

I wake up with the sun, well wait.....that implies I was actually sleeping so, I get out of bed with the sun more accurate, to go get poked and prodded and placed in a loud pounding cylinder spraying you with radiation for a few hours is a hell of a way to start off tax day....Oh Goodie!  Nothing really worthy of reporting except they are done without least not any noticeable bad vibes from the techs as you know they have an idea what they looking at.  Now to try to keep my happy face on and go on with my day, that means finishing taxes!  Get through tomorrow and most of Thursday all the while keeping my anxiety levels to a minimum as this waiting and uncertainty can kill you in it's own right.  Then of course there will be the actual reading of the taro cards Thursday afternoon.  UUGGHHHH!!

I can only hope I can keep my head up and think with my glass half full attitude and somewhat inappropriate sense of humor that got me through this shit the first time that all is fine......but I must if its not.......Nah, cant think like that Jeff - Yes, there is obviously something wrong, as I can actually feel something too so need to find out what this is and address it.  I just pray and hope it doesn't have anything to do with my prior or any of its nasty relatives or byproducts.

Going to be a long few days and then lets hope that's all folks!

Friday, April 11, 2014

What the hell?????

Well as expected a very restless night and sea of emotion as trying to focus-just cant get that sickly feeling of stress out of my gut.  Breath Jeff...Control the controllable!  Good news I can draw from today however is no phone call from the Doc and sure he's seen the labs on whatever muscle enzymes he was checking.  I'm sure if that further alarmed him, he'd call...right???

Second-OMG what the hell is this.  I remembered last night a picture of me from the 2012 Lahaina return where my neck looked really odd.  I dug it up and this is downright frightening! Why good news?  My annual scans were 2 weeks after this photo and I've had 2 additional scans as well as half a dozen check up exams since all with clean bills of health.  The question then is what the hell is it????

Enough over thinking for the day...nothing I can do so off to have some fun at our Annual April Foolish Make-a Wish Party!

Thursday, April 10, 2014


Where the hell that come from?  Guess I’ll be back posting here after all but God willing, only for one brief week while I run the nightmare of testing and waiting!!!!

Shy of the erroneous scan reading a few years back with the scar tissue in my shoulder, I have never had anything but a clean bill of health from any of my checkups!  NEVER! A perfect record no more and I am none too happy-Spooked quite frankly on the heels of Ricks services last week.  Trying to hold it together but admit have had a few moments as this has stirred up a whole bunch of feelings and memories as getting a handle on this, hopefully nothing more than, little setback as  I went to Dr Cho today for my 6 month routine where almost from the get go it was anything but!

He starts with his usual small talk about sailing and now possibility of Americas cup coming while he starts a general exam of feeling around, poking and prodding.  I think I notice a reaction while he feeling around my neck but I’m always a bit worried every time I walk in-My blood pressure was slightly elevated and the nurse shrugged it off to White Coat syndrome-he then goes into general questions about me on how I’m feeling, anything hurting all the while taking an extended interest feeling around left side of my neck.  I respond and hadn’t even though of mentioned to him but as a matter of fact yes, I have been hurting a bit.  My hip and legs have been oddly sore the last few weeks-like after a big hike or run yet I haven’t been.    He asks specifically where and if I have a sense of weakness while walking.  Umm yeah that’s exactly what it’s like.  Why?  Safe bet to say BP just jumped substantially and has nothing to do with WCS.  Back to the vampires for a another blood draw as he wants to check on muscle enzymes-He has obviously been down this path before and he’s never checked those levels before.  I come back into the exam room after getting stuck again and ask him what’s up and he says just wants to check those levels see if he can determine why having this pain.  I’m the glass half full guy but I don’t buy it.  We then go back to this extremely thorough neck exam that is a far cry from a massage and he’s’ never done this before either, nor had the perplexed look going back and forth to my old scans and charts.  It’s usually feeling the area once over and pau and my entire demeanor changes back to a dark scared mood I haven’t felt in years…and he knows it.  There is a look on his face I NEVER wanted to see during an exam again from a Doctor and that is concern, yet here we are.  FCK!  The nurse comes in with my original blood work results and we go through the rest of the exam as uneventful as always.  Fortunately all my blood work looks fine but he says that there is “mass” he feels on the left side that is not universal with the right and it needs a closer look.  He’s quick to say it’s only a precaution but we need a full scan workup to be safe and although it is completely different from the tumor of 2010 he wants to see what it is even if something as benign as a spazzing muscle as I do get them in my neck quite often from all the radiation.  It is something out of the ordinary and that never what you want in my situation and I so don not miss this anxiety and literally feel sick.

I went and caught my sunset and a glass of wine and had a nice phone call that actually made me laugh but I’m in a bit lost right now-it’s a surreal feeling and I don’t like it! There is obviously something amiss and I can hope it is completely unrelated. Cracking a bottle of wine isn’t going to help anything so I’m off to try get some sleep although I’m sure that going to be tough.  This is going to be a hell of a week!!  UUGGHHHH! 

Monday, March 24, 2014

Aloha Rick!

Control the controllable!

I haven’t posted much here in a very long time….and the last handful were more on the fluffy side anyway, but that is a good thing as no news is good news right!  Fortunately my reasoning for updating doesn't involve me directly however it is still something that has affected me dramatically in the last 24 hours and feel an update required, even if just for my own later use as really making me think as the damn train is back and rolled right over me!  

A reference I fortunately haven’t used in years that many of you may recall from my days in Queens, and thank god not for same reason this time, but the train blindsided me again as I received word yesterday of the passing of a friend and fellow “survivor” in Rick Moss.  This is way too close to home and has really rattled me as he was supposed to be part of our little hui of throat cancer SURVIVORS yet in his case, it came back and this time he was not so fortunate…further the speed in which it all happened is just as frightening and to think he was about 5 years or so ahead of me since his diagnosis…so much for being a “curable” cancer!  WTF????   Frankly, this has not only blindsided me but has simply scared the shit out of me in a brutal reminder of what cards we have been dealt and of my own mortality in how fragile this life is.

Rick had not only become a friend over the years through our Boys Bunch group, but also part of a much smaller circle of us that all have gone through this experience and felt fortunate to use that survivor phrase-not a program I recommend but we all made it out the back end and have a bond that I can’t really explain in which we shared this experience and can interact and help one another as need be with our own horror stories, remedies and general life issues that plague us all as we all are different-Everything from swallowing and taste  issues, to neck spasms to general days of still feeling plain shitty due to some of the radiation damage will never go away but as we've been there and the general population hasn't, its a unique and welcome bond and I feel fortunate to have some of these guys to call on or assist!  He had always been amazed as to my progress and speed as to much of my recovery as there were things that I am able to do that even now, he still wasn't able too.  He had expressed some concern over some irregularities over the Holidays to me and I had learned he had to go do some tests last month, but as I mentioned earlier, he never got through the recovery process as I did and he indicated it was just more of the same so never did I imagine the next news would that of his passing-we are all supposed to have beat this damn thing by now!

I have spent much of last night and today back here in the blog and reflecting on my own journey-talk about stirring up nightmares for myself but the realization that I was able to survive the hell of my 2010 treatments and recovery by living the mantra of “control the controllable” and created an environment that allowed me to focus on ways to best help making things work themselves out for the best and survive!  I surrounded myself in as much of a stress free environment as possible by not dwelling or concerning myself with things, people or issues that didn't have my best interests in mind or that I have no control over and focusing on what was in the best interest of beating this beast without any negative influence.  That still needs to perpetuate today although in reality that hasn't been the case over the past year or so as I've slipped back into a "normal" life of sorts where the day to day decisions are predicated on different goals and the stresses that come along with some of those have worked their way back in a multitude of forms and that is simply not healthy. I've allowed myself to lose that focus and control in many ways,  on both a personal and professional level,  that have made for a less than perfect environment for myself and continued health and that needs to be addressed NOW as I am a firm believer that stress IS a killer and C thrives on it.  With my health in check, all else will fall into place where it is supposed to but without it…absolutely nothing matters!  

This is a very scary reminder of how fast things can go so terribly wrong and I need to take care of what I need to for me first and foremost so I can then be here to take care of all the rest as it falls into its rightful place in life:)

All my best and condolences go out to Val, Lian and Logan 

A rather timely post that showed up under my FB feed as was directing you over here as well and I rarely look at these too!  LOL

Wednesday, February 5, 2014

Mama Lee

So my Aunt sailed through town last week on her home ship the m.s. Crystal Serenity and mentioned she was disappointed I hadn't posted anything her of late.  OF COURSE NOT-and that a good thing as that means there is nothing to report thank you very much-Id like to keep it that way.  But per her request, the Sunday Honolulu Star Bulletin ran a great article on her so her is a post for her!