The Journal of a
CANCER SURVIVOR
“Cancer Survivor”… well not quite yet.
They say you need to get a year past treatment to start claiming that… and 5 years to confirm it.
Since this all started in April 2007 and was initially documented in March 2008 at week 49+ of the first go-round, it has since turned into an ongoing SAGA that has stretched into 2024 and beyond. So, it's more "CANCER WARRIOR", and it appears that the jury will be out for awhile.
PREFACE
Why this, Why now?
Truth be told, it was never meant to be this extensive.
Initially written, at the request of those Fabulous Folks at Memorial Hospital System Rehab in Hollywood, FL, this "Journal" was intended to document my experience, from the Diagnosis of Head & Neck Cancer, thru Chemo/Radiation Treatment, Rehab and eventual Recovery for the benefit of future patients
"To Hear it "Like It Is"
from someone who truly has, "Been There - Done That!" and not just the usual "Doom & Gloom" the attending physicians and technicians initially present to outline worst case scenarios.
In August of 2020, a subsequent re-occurrence of SQUAMOUS CELL CARCINOMA, this time in my upper Esophagus, spawned the several episodes that follow, causing this, the initial Journal and the ensuing "Episodes" to be re-titled:
N.T.D.I.P ~ Part I
Not The Diet I Planned
2007 - 2008
N.T.D.I.P ~ Part II
NOT Another Un-Planned Diet!?!
Say WHAT?
2020-2021
N.T.D.I.P ~ Part III
W.T.F {!?!}
2022 - 2023
N.T.D.I.P ~ Part IV
Thru the Fire!
2023 - 2024
And Finally, we hope:
N.T.D.I.P ~ Part V
Are We Done Yet!?!
2024 - ?
BE AWARE, This is not a "Normal" Medical Journal. Hell, nothing about this re-telling of my journey was, and is "Normal", particularly how I write.
{This is the part where my 12th grade Journalism Teacher, Barbara Garfunkel if not rolling in her grave, is most certainly rolling her eyes.}
And... seeing as how this saga has now grown to 5 parts - and hopefully no more, I suggest that you grab a glass of your favorite beverage, or maybe the whole bottle, prop your feet up and settle in for an interesting, if not bumpy, read.
I also recommend breaking up the read to a least 4 or more sessions, easily done by selecting each episode using the archive on the right.
I promise, it will be anything but boring.
Uncle Chuck Note:
This journal will be filed with a lot of medical terms that I don't
want to waste time or space explaining so Click on any of the
Blue links in the text for in-depth definitions.
~ ~ ~ ~ ~
MARCH 2008
Cricopharyngis,
and the biggie:
SQUAMOUS CELL CARCINOMA
and the biggie:
SQUAMOUS CELL CARCINOMA
So thorough was their instruction that the journal{s} that follows will be salted with these terms and more.
Thanks also to WebMD and Dr. google where I learned the meanings of, and how to spell most of them.
~ ~ ~ ~ ~
A Not-So-Funny Thing Happened
A Not-So-Funny Thing Happened
On the Way to China
MARCH 19, 2007 - Monday
“Hello, Chuck? This is Sabrina again, Doctor Jaguan would like to see you as soon as possible, can you come right over?”
“Hello, Chuck? This is Sabrina again, Doctor Jaguan would like to see you as soon as possible, can you come right over?”
When your doctors office calls YOU to come in, ya just know it ain't gonna be good.
Since his office is literally around the corner I went right over and yeah…
It wasn't good.
Since his office is literally around the corner I went right over and yeah…
It wasn't good.
“There’s no easy way to say this, so here it is…" he says, "the biopsy came back positive, you have squamous cell carcinoma of the left tonsil and it has metastasized to the left cervical lymph node.”
“What now?” I asked.
“I'm taking the tonsil out Wednesday [March 21, 2007],
“Wednesday… That’s in two days! Is he kidding?”
The nurse assured me that he doesn't kid about these things.
"Hey, wait a minute… I just booked a trip to China, we can’t do this now."
“Wednesday… That’s in two days! Is he kidding?”
The nurse assured me that he doesn't kid about these things.
"Hey, wait a minute… I just booked a trip to China, we can’t do this now."
Not an option I'm told, perhaps I should postpone the trip.
"No way Doc, this trip was 40 years in the planning, we're going."
And so it began...
~ ~ ~ ~ ~
Uhhhh... let me back this up a bit for some background.
Apparently the little lump that I had noticed under my jaw line in late December 2006 was a swollen, infected lymph node, caused by squamous cell carcinoma in my left tonsil!
And here I thought it was just an inflammatory reaction to an infected dental implant that had come out in November of 2006.
Now the swelling in my jaw from that was gone but in December I noticed the lump in my neck. I ignored expecting it to go away until February of 2007.
IT... didn't go away.
My first ENT [Ear, Nose, Throat ] Dr. tried shrinking it with steroids and ibuprofen... Nothing.
So that's when I went to my wife's ENT, Dr Abraham Jaguan, pronounced HaaG-Wan on Wednesday March 14th.
As he poked his finger into my left tonsil, I almost came out of the chair.
"That's not Good", he says, "Time to order some tests"
After CT Scans and subsequent biopsies, I got the above noted call on Monday the 19th.
Now you're caught up.
~ ~ ~ ~ ~
THE PLAN OF ATTACK {?}
MARCH 20, 2007
Tuesday, and I scrambled to get a chest x-ray and releases from my primary physician and dentist since the dental implants were RECENT surgery.
MARCH 21, 2007
Wednesday came... and the tonsil went.
KNOW THIS, get your tonsils out by puberty… it IS NOT an operation, [cancer not withstanding], that you want done as an adult.
KNOW THIS, get your tonsils out by puberty… it IS NOT an operation, [cancer not withstanding], that you want done as an adult.
During recovery and under the influence of large quantities of prescription painkillers, I had my wife call to ask if he had perhaps left a large tangle of barbed wire in my throat after he used it to rip out my tonsil. The ever perky office manager Sabrina, assured us that he did not leave anything in there and what I felt was normal.
Well Now... THAT's a relief, no barbed wire… just - normal, excruciating, post operative pain!!!
Well Now... THAT's a relief, no barbed wire… just - normal, excruciating, post operative pain!!!
Next stop was a consult with Radiology Oncologist, Dr Srinath Sundararaman [say that three time fast after large doses of Hydo-morphone and Oxycontin] who proceeds to shove all sorts of strange objects up my nose and down my throat, one of which is the above mentioned Laryngoscope. After a lot of “hmmmm… Ahaaaa….Say EEEEEE…. Un Hunh….. Hmmmmmm”, he then proceeds to outline a course of treatment that sounds like something right out of the Spanish Inquisition. And of course… he wants to start ASAP!
“Hold on Doc… let me explain… I have airline tickets and a tour of China booked for April”
“Not any more,” he says, “we need to start Radiation and Chemo right away.”
“I don’t think you understand”, I said, “This trip is 40 years in the planning and I already have the airline tickets and tour bought and paid for, I can’t cancel.”
After further dialogue and negotiation we determine that: with the necessary preparations - and if we moved the trip up a week earlier - and start treatment immediately after our return, we would only be about 2 weeks behind his proposed schedule. That was the NEW plan.
Next stop - Dr, Raja Mudad, Medical Oncologist who will administer the Chemo-therapy and monitor my progress through what was being referred to around my house as "The Situation”. He also tries to talk me out of the trip as does my Primary Physician Dr David Tepper.
"Ain't happening boys, I'm going to China, so lets move on."
Of course in the middle of all this on March 28th, our 1st Grandson David Gregory Chouinard decides to make his appearance on planet Earth so while New Grand Ma Illy heads to North Carolina to do the all those 1st time Grandma things, I'm left to get the final stuff for the trip done including flying to Houston {Thank you Jewel Frei for the loan of your United Airlines Buddy Pass} and back in one day to get Visas at the Chinese Consulate, final shopping, etc. - all with this tangle of barbed wire still in my throat... Oh Happy Days!
KNOW THIS - Our two weeks in China were FABULOUS, all that I had hoped for and more;
Got to check off #7 on my bucket list:
“Walk a Mile on the Great Wall”.
Read all about our trip to China at
as well as our other globe hopping adventures on our Travel Blog:
THE NOWAT
[Notes of a Wacky American Tourist]
http://thenowat.blogspot.com/
[Notes of a Wacky American Tourist]
http://thenowat.blogspot.com/
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
Captains Log, Weeks 1-3
The Man in the Plastic Mask
The Man in the Plastic Mask
April 30th - The day after our return from China and I'm fitted for my Radiation Mask - a HOT nylon mesh that is fitted to my face and head to create a stiff profile mold, that will be used to keep my head immobilized during radiation. Not wasting any time, they promptly bolted the mold and my head to the radiation table to take Port Films to get the Radiation Field right.
May 7th – Marked the first of three doses of Chemo using Cisplatin, a drug so toxic that it has been known to cause hearing and kidney damage, but what the hell… it’ll kill the cancer too [we hope].
Hearing tests before and after the first dose confirmed that it blew out some high frequency levels in my right ear… but the kidneys are OK, or so they say. later tests show decreased kidney function, but moving on...
Hearing tests before and after the first dose confirmed that it blew out some high frequency levels in my right ear… but the kidneys are OK, or so they say. later tests show decreased kidney function, but moving on...
In hope of preserving what little hearing I had left, since according to my wife: I was half deaf already.[She rejects the theory of "Selective Spousal Hearing"] I elected to go with a less toxic drug, Carboplatin for the remaining two sessions
May 11th - In spite of my stubborn Sicilian posturing, Dr. Mudad’s able assistant Pat finally talks me into getting a PEG tube [percutaneous endoscopic gastrostomy ] inserted into my stomach for feeding, without it I won’t get enough nourishment. I was trying to butch it out but I'm already feeling my throat tighten up dramatically.
I wondered out loud if they consider Budweiser adequate nourishment, since it contains the "choicest Rice, Hops and Best Barley Malts"...
The Doctor only smirked, Pat loudly guffawed.
I guess the answer was no.
The PEG operation is scheduled for the 18th of May and boy was that fun.
Just for grins Gastroenterologist Dr Alex Lanoue decided to do an overdue colonoscopy as well.
Hey Doc, it couldn't hurt to check the oil and kick the tires while you're in there.
May 19th - I have my last solid meal with some dear friends at a great Greek restaurant on Ft Lauderdale Beach, where I discover - we waited too long for this night out and I can’t swallow those outstanding Lamb chops, and since they wont fit into the Feeding Tube - it was soup and Scotch for me that night.
And so began my love/hate relationship with Ensure and Boost liquid meal supplements.
Is that a needle in your pocket
or are you just glad to see me?
The radiation and chemo continue, and they start me on Amifostine injections every other day in an attept to protect my salivary function which is being damaged by the radiation.
In fact, EVERYTHING in the field of the radiation is being damaged, but hey… I was getting a helluva a tan on my neck.
Fortunately I don’t experience too much of the nausea expected with this delightful cocktail.
This is when I came to realize that the phrase “primum non nocere” [first, do no harm] - often mistakenly attributed to Hippocrates - doesn't count when it comes to Cancer treatment. The primary goal is to KILL THE DAMN THING and if they have to wreak havoc with other stuff along the way… we'll that’s just a little collateral damage - part of the cost of getting it done.
WELL NOW, as a result of all the high dose radiation concentrated between my upper lip and collarbone, I can barely talk except to exhale heavily and mouth sounds to express myself, the pain is ever-present. I have resorted to a Stomatitis Solution [equal parts of Lidocaine, Benedril and Mallox] swishing and swallowing to relieve some of the localized pain in my mouth and throat. I also abandoned Tylenol with Codeine, because of it's tendency to constipate, in favor of Hydro-Morphone [Poor Mans Morphine]
to control the ongoing pain. I have also developed severe mucositis [an inflammation of the mucosa] which causes thickened acidic mucus and blisters throughout my mouth and lesions on my tongue and gums, along with Xerostomia, severe dry mouth since my salivary glands have ceased to function properly and increased fibrosis, hardening of the larynx and esophagus, in essence my throat is turning to leather.
~ ~ ~ ~ ~
OK... time for an explanation about the Title.
“Not The Diet I Planned”
is because over this 8 week period I lost 35 pounds and will lose another 5 by the time I start rehab -5 pounds a week - nearly 20% of my body weight and being a skinny dude in the first place [Budweiser Belly not withstanding]...
Dr’s Sundararaman and Mudad are not happy about this…
BUT... I did get down to my best fighting weight of 155 - they just don’t see the irony of it. It took me 30 years to put it on and just 8 weeks in their dungeons to take it off.
I'm ordered to get at least 2400 calories a day in the tube because now, swallowing is not an option.
My primary Physician, Dr Tepper on the other hand just laughs and says:
“The Good News is: All those things we told you not to eat before… well NOW you get to eat them… try cheesecake, ice cream, high protein foods, eggs etc. Don’t worry about the cholesterol… we'll deal with that later.”
Which reminded me of his favorite line:
Cheese Cake!!! Haagen Dazs!!! Quiche Loraine… If it wasn't for the pain, I’d be in heaven.
"The Benefit of having a fat doctor is that
he can't bitch about YOU being fat."
Cheese Cake!!! Haagen Dazs!!! Quiche Loraine… If it wasn't for the pain, I’d be in heaven.
~ ~ ~ ~ ~
June 19th marked the last dose of Chemo and June 25th the last dose of Radiation. By now I can barely communicate, the mucositis is unbearable, I get maybe 1 - 1 ½ hours of sleep before I wake up drowning with my throat full of thick, sticky fluid. My nights consist of this constant waking and cramping from de-hydration… getting a total of 3-4 hours of sleep at best.
Ironically, there’s no cranial hair loss from the Chemo. I was prepared for and could have handled that but my beloved goatee, that took 35 years to get exactly the way I wanted it, came out in patches due to the radiation. My Chin was as bald as a babies butt while the mustache part stayed. [It was not in the field of radiation] Eventually the goatee would return, albeit sparsely at first and most of the grey is gone - go figure.
Captains Log, Weeks 10 thru 47
You're going to do WHAT with that THING?!?
July 2nd - I meet with Marci Kahn and Caren Chase at Memorial Regional Outpatient Rehab Facility for Speech Therapy evaluation. They schedule me for a Modified Barium Swallow Study [MBSS] to assess the damage of the radiation to my throat and the swallowing function. The MBSS shows that the damage to muscles in the tongue, the epiglottis and attendant muscles was pretty severe; the epiglottis doesn't deflect properly and the Cricopharyngeus is so stiff it isn't helping the esophagus to elevate properly causing me to aspirate liquids and some soft solids into my lungs.
July 11th – Speech Therapy gets started with Marci until Caren returns from vacation. Speech therapy, in this case is a complete misnomer … it should be called Swallow School [ooooohhhh sounds somewhat pornographic] as I am suffering from acute Dysphagia [<click on the link for an in-depth explanation]
I'm now introduced to E-Stim therapy, whereby electrodes are attached to my neck and throat to electrically stimulate the muscles and hopefully reactivate the damaged salivary function.
For the next 9 months, twice a week - 58 sessions in all, I bring various foods and drink to consume while attached to what would appear to be a Russian KGB torture device that is shocking my throat, tongue, and neck muscles and hopefully my salivary glands into action.
If it wasn’t for the pain of the mucositis and mouth blisters, it would almost be comical. But then, I've always had a bit of a sick sense of humor. By now I have taken to swishing and swallowing the stomatitis solution and applying 2% Lidocaine to the worst blistered areas around the inflamed tonsil post and lesions on my tongue in order to tolerate eating and swallowing.
July 26th - I have the first post Radiation PET scan [positron emission tomography] … all appears clear… they think the got the little bugger but I'm still glowing a bit from the radiation so they want to wait a few months to do another scan to be sure.
August thru October
My first foods for therapy amount to Jell-O, Vanilla pudding, oatmeal, apple sauce and artificially thickened juice - Yummy... NOT!!!
The E Stim is set at 4, I can barely handle it. After 6 weeks progress, I move up to pastas, thick soups and eventually grilled cheese sandwich’s.
The E Stim is now up to 10. Mashed potatoes and bread pudding seem to work well.
I take a chance at a hamburger and shake from Mc D’s. A bit rough, but it goes down. By the end of October the E Stim setting is up to 12, but burgers are still a challenge.
November 5th Another MBSS shows better deflection of the epiglottis but continued silent aspiration of thin liquids. I still need work. And I'm getting really tired of Ensure and Boost but the PEG tube is still necessary
November 5th Another MBSS shows better deflection of the epiglottis but continued silent aspiration of thin liquids. I still need work. And I'm getting really tired of Ensure and Boost but the PEG tube is still necessary
Now comes the real test, do we dare try a Hoagie? Ooooppppssss…. a bit too soon so it’s back to grilled cheese and pasta.
E Stim is dialed up to 14. As we approach Thanksgiving, I'm tolerating more semi-solid foods and finally can handle hamburgers fairly well. Maybe turkey dinner isn’t out of the question.
November 29th the PEG Tube is removed and I'm drinking the Boost orally and on December 11th – the 2nd PET scan comes back ALL CLEAR!!!
November 29th the PEG Tube is removed and I'm drinking the Boost orally and on December 11th – the 2nd PET scan comes back ALL CLEAR!!!
We celebrate with close friends, over a nice pasta dinner, and a fine bottle of Montepulcino De Abruzo. Maybe a bit too soon for the wine, the Mucositis doesn't like it [the tannin burns the lesions on my tongue and trigger muscle spasms in my jaw], but I can actually begin to taste stuff.
January 1, 2008 The New Year sessions start with a steak 'n' cheese hoagie with the E Stim starting at 15 and increasing to 16 during the session.
January 30th The next MBSS shows improvement but still some aspiration. We’re up to steak sandwiches during therapy and solids at dinner. Sessions continue into March where more solids are tolerated.
March 19th [one year after the tonsillectomy] the final MBSS shows full deflection and lingual mobility, no aspiration. I'm discharged from therapy and await the final PET scan in June to confirm that we have solved my “Situation”. I have, however, periodic relapses of mucositis and pain around the tonsil post.
January 1, 2008 The New Year sessions start with a steak 'n' cheese hoagie with the E Stim starting at 15 and increasing to 16 during the session.
January 30th The next MBSS shows improvement but still some aspiration. We’re up to steak sandwiches during therapy and solids at dinner. Sessions continue into March where more solids are tolerated.
March 19th [one year after the tonsillectomy] the final MBSS shows full deflection and lingual mobility, no aspiration. I'm discharged from therapy and await the final PET scan in June to confirm that we have solved my “Situation”. I have, however, periodic relapses of mucositis and pain around the tonsil post.
Captains Log, Week 49+3
The light at the end of my tunnel
was NOT a freight train.
YEA!!!
Not having experienced any other facilities [nor do I really care to] I am convinced that Memorial Regional Cancer Institute and their Fitness and Rehabilitation Center are without a doubt, one of the Finest Medical Facilities around. From the beginning, the professionalism and caring was un-surpassed.
Believe me when I say [and those that know me well will concur]…I AM A HANDFUL, yet everyone…. And I mean EVERYONE handled me as if I was the only patient to be cared for. The Physician’s, Nurses, Therapists, and Technicians are some of the finest people under whose care I have had the privilege of being and it is important that I recognize them by name for I truly believe that they are all the reason I'm looking at the dirt from the topside today.
Dr’s Sundararaman, Botero and Mudad aside from being extremely talented, have what we call in my business an “Exceptional Care Quotient”, their compassion and gentleness were just what one needs in this type of “Situation”.
Dr’s Sundararaman, Botero and Mudad aside from being extremely talented, have what we call in my business an “Exceptional Care Quotient”, their compassion and gentleness were just what one needs in this type of “Situation”.
Their nurse/Assistants Michelle and Angel are incredible as were the Radiology Techs whose gentle thoughtfulness and attentiveness during my daily ordeal on the RACK was much appreciated.
The Team in Chemo is the Best and again that “Exceptional Care Quotient” was there, warm blankets, a soothing touch, cooling drinks and some of the best needle pushing I've ever experienced.
What can I say about the Rehab Team but W O W!!!! The Physical Therapists have some of the best hands in the business.
And then there are My Angels of Speech Therapy.
The Team in Chemo is the Best and again that “Exceptional Care Quotient” was there, warm blankets, a soothing touch, cooling drinks and some of the best needle pushing I've ever experienced.
What can I say about the Rehab Team but W O W!!!! The Physical Therapists have some of the best hands in the business.
And then there are My Angels of Speech Therapy.
When I first met Marci Kahn and Caren Chase, I was immediately impressed with their professionalism and thoroughness. Caren coached me through the bulk of the 58 sessions and I cannot find enough words to express my gratitude for the manner in which she took me thorough the toughest fight of my life.
Radiation left me in such bad shape with pain so intense that I swore I could never recover, that I would never be able to eat solid food again. Caren was having none of that. Week after week, session after session, she coached, cajoled, coddled, disciplined, challenged and taught me.
She answered all my questions with great patience explaining each step with illustrations and literature.
I truly believe that without her gentle but firm guidance, I could not have reached the level of recovery I now enjoy. From soup and Jell-O to a Steak Dinner in 9 months, I cannot thank her enough. She truly was my Guardian Angel. [And her Chocolate Chip-Banana Bread is “Da’ BOMB”]
And while the Memorial Health System strives for a 5 on a scale of 1 - 5 …
you all rate a 10 in my book.
THANK YOU ONE AND ALL!
~ ~ ~ ~ ~
Uncle Chuck Note:> As of November 2020,
I was 12+ YEARS CANCER FREE!
until...
The Saga Continues!
Click the Archives on the right ==>
[if your on a computer]
or the link below
for the next episode
{Uhhhh... ya might want to grab another bottle... the next episode is ANYTHING but brief}
