D-Day Has Arrived!!

Well, first of all, thanks to all who left words of encouragement on yesterday's post.  There's nothing like fan mail to keep you going!!!


But the treatment started today with the first radiation session.  And, I have to admit it was less daunting and claustrophobic than I expected.  The funny thing was that the only discomfort was that my neck was killing me from the awkward position that they strapped me into.  But then, even that is a good thing in its weird way as I really don't want to shift around too much and mess up the aim of the laser beam aimed at my throat - there are too many other arteries, organs, and other goodies that I'd rather not have radiated.


And tomorrow will be the first chemo session.  So, we'll see how that all goes.  For those of you old enough to remember the original Mickey Mouse Club, every day is a 'Mouseketeer Anything Can Happen Day'.


And every day truly is better than the day before.


Peace and love to all!!!
Joe

D-Day Minus 1

Well, this will be the last post before my first radiation treatment tomorrow.  And, I have to admit that I have been more prone to wild mood swings than I thought I would be.  The overwhelming feeling is that recovery will ultimately be complete but there will be many, many bumps along the way.  By way of digression, we all know when our bodies are telling us something.  Downside is, we do not always listen.  Fortunately when my body began to tell me all was not right back in September, I paid heed as well as I could.  Finally, with the help of my ENT, Dr. J. P. Gniady, the diagnosis was finally discovered.  Not the one I hoped for, but the diagnosis none the less.  And since that point, my body has been telling me that we're going to pull through.  And I do believe that with all by heart and mind.


Of course, that doesn't prevent the other moods and feelings from having their say.  As much as I hoped to face this with bravado and reckless courage, I am quite frankly scared.  Oh, it's not at the forefront of my being, but it is indeed always lurking.  Tomorrow begins the toughest and scariest journey I will undertake since I held my then 22-year old son's hand as he took his final breath 9 years, 2 months, and 10 days ago.  Is this one harder than that??  I am proud to say that I have evolved to the point where I am not regarding that as a 'competition'.  Some of you have heard me describe the differences as, with David, it was more 'been there, seen that' for me than 'been there, done that'.  The differences may seem subtle, but they are not.  But what I am beginning to appreciate is the effort that David expended in dealing with the fears and apprehension that I now know he was feeling.  He did a great job from masking it from Mom and Dad, but I am now even more thankful for the vast network of friends that I know carried him through his moments of fear and doubt.  One more time, quick kudos to my support team!


But back to the fear, yeah, it's there, and will remain until I hear those magic words like 'remission', 'cured' and 'recovered'.  But those are a different story for a different day.  The surprise to me was the advent of anxiety.  That has been a different story and, for the past few days as the journey into the unknown looms, it is a pervasive aura over everything I do.  And, one more time, I thank Elaine for suggesting that I ask my doctor, Bonnie Gabriel, for an anti-anxiety prescription.  The past few days, I have thanked the pharmacy gods for the invention of Xanax.  I had really hoped to not have to go that route, but, I have allowed myself to come to the realization that peace of mind and comfort during the treatments will far outweigh any bizarre and misguided sense of machismo that society dictates a guy have.  I now have nothing but praise for better living through chemistry!!


OK, gentle readers, enough rambling for now.  Stay tuned for the first installment of radiation tomorrow when I should be absolutely 'glowing' about now!


Peace and love to all!
Joe

The Games Will Soon Begin!!

Well, at first, I thought that having this week 'off'' would be somewhat nerve-racking as I'd be chomping at the bit to get on with the treatment.  But. . .


As I often say, the mojo works in mysterious ways, but it always works. . .


And the main really good reason why the delay is good has absolutely nothing to do with me.  Yesterday morning, we got a call from Elaine's Mom's Life Alert at about 6:00 AM.  Turns out, Mom was having some breathing problems and was taken to the Venice FL Hospital Emergency Room.  Elaine went along and stayed till all was stabilized.  Mom is going to be fine, but is beastly tired - something you earn when you've made it to 91, if you ask me. . .   To cut to the chase, in lieu of going straight home from her short stay at the hospital, Mom is going to spend some rehab time at the rehab hospital where Elaine works.  So, while my angel is driving me to treatments next week, she will have the relief of knowing that Mom is safe and in good hands.  So, all will work out there!


Now, for the more mundane reasons of why I'm finding that having this week 'off' from treatment is a good thing. . .  First, it's good for me physically.  I'm getting some rest and with the high-calorie nutritional drink that I've been given, my drastic weight loss has been checked and I've actually gained a few pounds back.  My appetite has also returned so I'll be in better shape to start the radiation and chemo next week than I would have been this week.  Weirdly enough, I actually feel better this week than I have in months.  I went into the office yesterday to say 'hey' to the folks there before beginning two months of treatment and was told how good I look by many people there.  Hell, I should have done this sooner!!!


And I have to also think that I'll be a little more emotionally ready to handle the treatment.  I had my first actual anxiety attack late last week and an mini one a few days ago.  I think that I had to go through them.  I'm not going to ever totally get over being scared, but I'm thinking that some momentary walks on the dark side will help me maintain my balance and keep my focus on what it's going to take from me to get through this. 


And I'm really getting the chance to appreciate my support team.  I always shy away from naming names as I don't want to leave anyone out, cause there are always those behind the scenes folks working in anonymity.  But I'll run the risk to shout out to Elaine who is my rock and without whom I would not have the proverbial snowball's chance of getting through this, to Karen who is going though the cancer drill with me for the second time in 10 years, and to Will who is keeping me supplied with happy-hour milkshakes from Steak and Shake and ensuring that my book and CD supply is ready for the 'idle' time I'll be having.  And, of course, to all my children, Kate, Joey, Adrienne, and Liz, whose thoughts, emails ,texts, and FB posts, brighten my days like no others.


The countdown to recovery is in motion and I'm ready for it to begin.


Peace and love to all!!
Joe

Still Holding but the Starting Gate Begins to Emerge

So I had my baseline hearing test today as the radiation and/or chemo could trigger both temporary or permanent hearing loss.  So, there will be another test a few months after treatment is complete to compare the results and assess any damages.


Other than that, it's now wait until the first radiation treatment on March 31.  Let the games begin!!!


I was not accepted into the clinical trial but that's OK.  I knew that was a distinct possibility.  It seems that when they took the cell sample for the biopsy, there was enough to do the diagnosis, but not enough to provide the slides that would be needed to complete the analysis of the trial.  And the radiation oncologist, Dr. Caudell, said that they could not in good conscience put me through the ordeal of extracting a larger sample.  I like that line of thinking!!


But, it will be slow for a while,  Will check in later.


Peace and love to all!!!!!!!!!!!!!!

Temporary Holding Pattern

OK, so almost all of the preliminaries are out of the way.  My dental work has been completed (it turns out that after there should be no serious dentistry performed until three years or so following radiation) and I'll have a baseline hearing test on Thursday.  Yesterday, we went up to Moffitt and I was fitted up for the mask that will hold me in place during the radiation treatments. 


Starting date depends on whether or not I'm in the clinical trial or not - no real delay, it just predicates whether or not I have the first chemo the same week as the first radiation or a week before.  It's just a little scary as I realize this stuff is real. .   ;-)


Speaking of scary, I have to admit that finding out early on that the survival rate of my particular strain of the disease is over 90% was really huge.  Having been with David 10 years ago when he went to the mat with the Grim Reaper, I don't have to worry too much about reliving that rabbit hole. Of course, what I hear is that beating the disease is the easy part - it's surviving the cure of radiation and chemo that's the hard part.  But, most seem to do it and I'll just be happy taking my chances, than you very much!!!


Speaking of David, I know there will be times that I will hear his voice and will draw strength from it.  (Quick aside - I have been drawing strength from all my family and friends so far - you all rock!)  But the good Lord willing and the creek don't rise, I will not be joining him just yet.  But I can sort of imagine the first words he'll have for me as I begin treatment soon.  it will go something like this:  "OK, Popster.  I love you dearly and would love to spend more time with you.  But, I'm now perpetually 22 years old.  I still have lots of stupid stuff I have to do.  Do I want my dad around watching?  I'm thinking not."


Talk at you all later!!!

The Official Prognosis

Well, today the biopsy results came back with no real surprises - squamous cell carcinoma at the base of the tongue caused by  HPV (the Human Papillomavirus Virus).  The disease is stage 4A, but it seems that stage 4 isn't as ominous with neck cancers.  The survival/recovery rate is over 90%.  For those of you who live in the Sarasota area, those are better odds than you have of crossing the street safely during tourist season.


Due to the cause of the disease and the fact that I am not a smoker, I may be a candidate for a clinical trial of an alternative drug to the chemo normally employed for tongue cancer.  For a quick refresher, the treatment, for 6 or 7 weeks, will consist of radiation and either 3 or 8 chemo sessions, depending on if I am in the trial or not (the higher number would be in the trial).  If I'm deemed eligible, I will opt into the trial.  I have been closely touched by cancer twice now and will do whatever I can to prevent one other person from developing this vile and insidious disease.


The will be some screenings next week and some other tests and things going on and the treatment in about 2 weeks.


Looks like a helluva ride!!!!

First Step

So today, I had my feeding tube installed, through which I will be ingesting Purina Joe Chow (OK, actually Boost VHC, for Very High Calorie).  One more time, who would have ever thought that I would hit the point of trying to gain weight?? 


Other than feeling like I was kicked in the stomach by a mule, it's not that bad.  And the soreness will go away, I have been assured.


Tomorrow is a day away from Moffitt and we go back Friday to meet with the radiation oncologist.  New surprises ever day, but it's still a great life all in all!!

The Plan Begins to Form

As my wife Elaine said, our experience right now is like riding the Haunted Mansion at Disney World - you get carried along on the moving sidewalk to the next surprise.  But today's surprise was a good one.  We got the result of the PET scan that was done yesterday.  The disease has spread to a few lymph nodes, which was expected, but it has NOT spread anywhere else!  So, it is eminently curable using the treatment regimen on radiation and chemotherapy.  The tentative plan, which should begin either 3/24 or 3/31, will consist of 7 weeks of radiation with three sessions of chemo, the first, middle, and last weeks.

In the meantime, I'll be getting specially modified tomorrow with a feeding tube to help me get the calories and nutrition that I will most likely not be able to eat normally.  (Any who knows me will swear that this is science fiction.  Who would have ever thunk it??)  The doctors and therapists will want me to keep eating what I can by mouth, knowing that it will be minimal, but it is important to keep the muscles active.  And, there will be swallowing exercises involved, too.  The tube will remain in place until the recovery is complete.  It will be a red letter day when it is removed!

In the meantime, I'm doing everything I can to maintain perspective.  As we were leaving Moffitt on Monday, we noticed the large number of keys on the valet parking board and realized that each set of those keys  represents a person whose life took a turn that they never saw coming.  But you can't tell by looking at them as they get into their cars.  They are my compatriots as future cancer survivors.

BTW - Several people have tried to post unsuccessfully post comments - you have to save them, then publish them.

Goals

OK, my first goal in this adventure is simple - to beat this vile, insidious disease, preferably back to the Stone Age.

But along the way, there will be others that develop.  I've decided that my first additional goal is to make each doctor or medical technician involved in each treatment laugh at least once.

First Visit to the Moffitt Cancer Center in Tampa

So I had my first actual visit to Moffitt and the first face-to-face meeting with my oncologist, Dr. Kristen Otto.  She seems really smart, confident, and capable and I have real good feelings about the treatment coming up.


First, a little background.  I'm assuming that most of you who are reading this know my family history, but I'll fill in those of you who may be uninitiated.  The ultimate irony is that 10 years ago next month, my then 21-year old son, David, was diagnosed with melanoma, or skin cancer, the disease that would take him from us 9 months later.  So, I am, for good or ill, familiar with the terminology and familiar with spending time in cancer wards.  For that reason, I'm thinking that this whole experience is a little less daunting for me than it may have been otherwise.


But, back to the present.  Today, they reconfirmed the initial diagnosis of tongue cancer, took a biopsy to determine more of the nature of the disease, and discussed the preliminary plan of attack, which, barring any surprises, will consist of radiation and chemotherapy, most likely beginning in about two weeks.  The time up until then will be filled with other preliminaries and, hopefully, some rest time to get my strength up to withstand the treatments.


On Monday, I will get a full PET Scan to determine if the disease has metastasized and on Wednesday they will insert a feeding tube to get me through the period of the treatment when eating will be nigh near impossible.


The really good thing is that I've know for 4 - 5 months now that something was not quite right.  At least now, the disease has a name.  Yeah, I'd rather its name was something like 'Fred' or 'Zelda', but it is what it is.


I will be taking off at least the next three months from work, and I will miss the people there.  Many of them were there for me 10 years ago and they are one leg of my support team of family and friends.  My wife Elaine has been an absolute rock for me, as I know, oddly enough, there will be times I'll be hers. 


There can never be too many rocks in our lives.


Peace and love to all,


Joe

OK, Campers.  This is where I will be posting updates on my battle against the bizarre enemy, tongue cancer.  By the end of the journey, I'm hoping to be quoting everybody's legend, Jerry Garcia, saying 'What a long, strange trip it's been.'

See you on the flip side!!