PREFACE II
This "Journal", started in 2008, was originally written to document my 2007 battle with Squamous Cell Carcinoma of the head and neck in my left tonsil, thru chemo/radiation treatment and finally rehab, 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" that the attending physicians and technicians initially present to highlight worst case scenarios.
In 2020, a subsequent re-occurrence of Squamous Cell Carcinoma in my upper esophagus caused this episode to be written and entitled: “Not Another Un-Planned Diet!?!”, or “N.T.D.I.P. Part II”.
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 for in-depth definitions.
~ ~ ~ ~ ~
And we all
know when something begins with:
“Here’s the Deal”,
it’s usually about anything but -
“The
Deal”.
Uhhh...then again, maybe not, read on.
THIS - Deal - is really about sequels. Truth be told, I'm not big on sequels. The majority are mere attempts
to create a franchise of some sort based on a successful original thought, and usually just a white-washed
rehash of the same characters with a shakier plot.
And while many of them attempt to continue the story
line with new or somewhat relevant/clever content and character development, some work - but most
don’t. The Godfather III comes to mind – seriously - too many
contrived situations.
[This is the part where we again suggest you grab a glass [or two] of your favorite beverage, kick your feet up and settle in, this will take a while...]
And with that in mind...
If you had
the patience to slog through the marathon that was the original:
Not the Diet I Planned,
what follows may seem to be a re-hash of my 2007 saga - I promise you, it IS NOT!
If you didn’t read the Original N.T.D.I.P. -
It might help to head on over to:
Or just *CLICK* the Archive on the Right >>>
[Uhhh... maybe you should grab the whole Bottle.]
Go Ahead, I'll wait for you here.
Still Waiting...
OK good, you're back...
Now where was I?
Oh yeah, you were about to ask:
"What's with the Title of this segment:"
'NOT Another Unplanned Diet!?!"
Hang on... we'll get around to that in a bit.
As I was saying...
THIS, therefore, is NOT a Sequel but a
new Chapter in my apparently never ending struggle to maintain some semblance of balance and sanity while attempting to find the REAL Meaning of Life as a Cancer
Survivor.
Seriously, I WAS a 12 year Cancer
Survivor until…
~ ~ ~ ~ ~
Captain’s Log
Week of 09 Nov 2020
Wednesday 12 November - 4:00PM
“Good afternoon, Mr. Mercurio, this is Valerie at Gastro Health, can you be available for a TeleMed Call*
tomorrow at 9:00AM, Dr. Maratchi would like to speak with you?”
*TeleMed Calls: The latest affront to personalized Medical Care Giving -
Ultra-Safe Distancing via a Video call from your Doctor
due to the safety
constraints created by the ongoing
Covid 19 crisis. And yeah -
it's kinda hard to take your vital signs on Video!
OK, this DOES seem to be a rehash of 2007 – just different players!
Naww... but we'll just Flash Back a few months a bit for clarity.
Having "survived" a traumatic bout with Stage III Squamous Cell Carcinoma of the Left Tonsil 13 years ago that involved 6 weeks of Chemo and Radiation 52 Speech therapy sessions and a year of recovery, sometime in August 2020, I began to experience some
unusual discomfort in swallowing.
While over the past 13 years I have had significant Dysphagia and fibrosis in the throat muscles due to the damage done by the Photon radiation and Chemotherapy treatments in 2007, this issue was different. This was a burning on the other side of my throat, opposite the site of the cancerous tonsil that was removed March 21, 2007.
Note - PHOTON Radiation, delivers a wide field x-rays, or beams of photons, to the tumor and beyond it. This can damage nearby healthy tissues and can cause significant side effects. By contrast, PROTON radiation delivers a beam of proton particles directly to and stops at the tumor, so it's less likely to damage nearby healthy tissues.
Not wanting to panic too much, I
went to see Dr. Abraham Jaguan, [pronounced Ha-gwan] the ENT who had diagnosed and operated on my
original issue in 2007 and who has treated my various sinus and throat issues ever
since.
Over the next 2 months of increasing discomfort, several in-depth examinations failed to uncover any abnormalities that he could see, finally
deducing that the spot where I was indicating the pain appeared to be more in the upper
esophagus than the oropharynx.
Since it was below where he could
see with his scope, he recommended I see a Gastroenterologist for an endoscopic exploration.
He also suggested that a minor Dilatation might relieve some ongoing dysphagia
issues while we were at it.
That’s where:
 |
| Dr. Leon Maratchi |
entered the picture in early November 2020 and who, after a brief consult
immediately ordered an Endoscopy to take a look - along with the fore mentioned
dilatation.
Now where were we... oh yeah,
Thursday 12 November – 8:30AM,
So, 30 minutes early - as instructed, I logged into a
Zoom Meeting, and caught Dr. Maratchi in his car -
He'll call back when he gets to his office.
Cue echoes of that all too
familiar line from
March 17, 2007…
“Good Morning Mr.
Mercurio,” he starts, “There’s no
easy way to say this, so here it is… after the dilatation, I took several biopsies
of a mass I found in your esophagus and they came back positive for squamous cell carcinoma of the upper esophagus.”
{Uhhh, to quote the Late-Great Yogi Berra-
“It’s
like Déjà vu – All over again”}
Dr. Maratchi continues,
"I'm setting up a
consult for you with a Thoracic Surgeon, Dr. Mark Block, to discuss Surgery to
remove the Tumor.”
We'll now, ain’t that just dandy!
BUT, at least I had 13 GOOD years!
~ ~ ~ ~ ~
Captains Log
Week of 16 November 2020
Monday - 9:00AM
The Good News:
Thoracic Surgeon at Memorial Cancer Institute in Hollywood is considered one of
the Best.
The not so Good News:
If there aren’t adequate
margins - good clearance above and below the tumor - to re-sect
the esophagus, and due to the presumed proximity of the tumor to the juncture
of the esophagus and the larynx, surgery is probably not possible without also removing the voice box.
Uhhhhh… THAT’s not happening!
"What else ya got Doc?”
To better assess the approximate
location of the tumor and to be sure the cancer has not metastasized
anywhere else in my body, Dr. Block orders a PET CT scan, before we proceed any further. Once those results come in, he'll schedule an
endoscopy and Ultra-Sound to more precisely locate the problem.
He also plans to insert a PEG Tube in anticipation of the next step – Chemo/Radiation
therapy. The reason for the PEG is that
during and after the radiation, it is anticipated that my throat will begin to get inflamed, scarred and
restricted as it did back in 2007, thereby inhibiting my ability to swallow adequate nutrition. The only way to get said nutrition is to force liquid
nutrition, and anything else that will fit, thru the PEG directly into my stomach.
But Wait… There’s more –
“Tell ‘em what else they get Johnny!"
Now if all this wasn’t enough…
Prior to all this mishigas, I had gone to see Neurosurgeon  |
| Dr. Clinton Burkett |
about possible cervical spine
surgery/Artificial Disc Replacement or whatever, to relieve the increasing pain
I was experiencing in my neck and left arm, not to mention a few bulging cervical discs. Mostly due to the significant damage done to my cervical spine and trapezoid muscles by the radiation treatment in 2007 and a couple decades of hunching over my computer keyboard. Dr Burkett orders an MRI to assess the damage and develop a potential treatment plan.
Of course after reviewing the MRI, Dr. Burkett concludes, as have all the previous Neurosurgeon’s [3] that I've seen in the past several years, that since the radiation damage was significant, as well as my spine having lost it's curvature and the Stenosis is so advanced, surgery is the last option - if at all - that he’ll consider. Not to mention that Insurance companies want all conservative approaches taken first, i.e. Pain management, Physical Therapy, etc.
So Yeah - in the middle of all the Cancer Drama - Physical Therapy was scheduled, with:
 |
| Eileen Gavilondo |
one
of the Physical Therapists who treated me with post cancer therapy back in 2007.
Additionally, I scheduled an appointment with Dr.
 |
| Dr Andrew Chang |
Sooo...
The afternoon of the 16th, after my meeting with Dr. Block and all the "Good News - Not So Good News" stuff - Dr Chang gave me my first epidural nerve block to relieve some of my neck issues.
Maybe the epidural will help relieve some of the discomfort, particularly that which I'm bound to experience during our upcoming travels [see below].
[p.s. - not really]
Meanwhile, back at Memorial Cancer Institute…
Tuesday – 11:45AM
My next stop is to meet with:
 |
| Dr. Jennifer Zikria |
Medical Oncologist and the "Quarterback" of my medical team, to discuss a Chemo/Radiation plan.
And of course, she will coordinate a meeting for me on 24th with my previous Radiologist:
 |
| Dr. Srinath Sundararaman |
[say that fast 3 times after a few scotch on the rocks]
“Are you Sure this isn’t a sequel?”
Now, In spite of C.D.C. Covid-19 Travel Cautions, we already had plans to fly to Atlanta on the 22nd to spend
Thanksgiving with our son Brian and his girlfriend Terri. As such, the meeting with Sri scheduled for the
24th would be via TeleMed.
And yes, Sri and I are on a first name basis – I tend to get personal
with people who, for 5 years, had regularly stuck all sorts of stuff up my nose
and down my throat.
~ ~ ~ ~ ~
Captains Log
Week of 22 November 2020
The early Sunday Flight to
Atlanta was uneventful. Brian and Terri met us at the airport and had Mimosa’s,
Hot Cocoa and Bagels with schmear waiting for us in the car... but of course!.
Now THAT’s what I call a Car
Service!!!
[Uber/Lyft… are you paying attention here?]
November 24 - Tuesday 3:30PM
The TeleMed call with Sri
happened as scheduled. He’d had a chance to see the PET scan report and reported that fortunately the cancer was still contained in the esophageal region and
had not spread anywhere else. Well now…
at least some good news -{I Think}.
While I had him on the line I
inquired about Gama/Cyber Knife
therapy as opposed to the Photon
Beam Radiation I had
previously, which did all the damage and possibly contributed significantly to the
current situation. He advised that those
modalities were too intense for the area affected.
However, Proton Beam therapy would be an excellent option to kill these type of tumor cells due to its
more focused and exact beam that stops at the target [somewhat like a dot matrix printer if your old enough to know what one of those is] without passing through it. This type
of treatment can reduce the amount of radiation damage to healthy organs and tissue around, near or behind a tumor.
Unfortunately, they don’t have
that technology at Memorial, but… the Miami Cancer Institute at Baptist
Hospital in South Miami does and he would make a call to his connections there
for a consult.
We agreed to table any further
discussions on treatment until I met with Dr. Block, since he was the one who ordered the PET scan to discuss surgery
– one-last-time - or other possible treatment plans.
Thanksgiving week was the
priority for now and we took full advantage of everything that Brian and Terri had
planned - all of which is a lovely story - but for another time.
Suffice it to say: It was a GREAT Visit.
~ ~ ~ ~ ~
Captains Log
Week of 30 November 2020
Oh… and it just keeps getting better… NOT!
Monday 5:00PM
After the flight back home and
not feeling like cooking dinner, we head to Hooters for Wings and beer.
Tuesday 7:00PM
By early morning, I realized that
Hooters had not been a good idea - I was having a severe gastric pain.
Being a stubborn Sicilian, it took until 6:00pm before I relented and wound up spending the evening of December 1st in the E.R. at Memorial Regional Hospital in Hollywood with what turned out to be a Serious gallstone attack.
Upon discharge, E.R. Dr. DiDonato
recommends I see a General Surgeon and get the Gall Bladder taken out, it was only
gonna get worse.
Oh sure now… just keep piling it on why dontcha?!?
Wednesday 3:15PM
Another PT session with Eileen kept
me moving however since Chemo and possibly radiation is a reality
regardless of which route we take, Dr. Block schedules a Chemo Port insertion
on the 7th so they don’t have to keep looking for a vein each time I
undergo 4 hours of chemo treatment.
Friday 2:00PM
And of course due to theCovid 19 pandemic Memorial Regional Hospital Systems protocol requires that I get a COVID test 72 hours prior to any
procedure. Sooo... it’s off to the Memorial Regional
Conference Center where the “Swab Squad” does the Covid testing.
~ ~ ~ ~ ~
Captains Log
The Week of 7 December 2020
The weeks dance card filled up rapidly starting with:
Monday 7:00AM
The Chemo port is inserted at
Memorial Regional’s Outpatient lab. Of course for some unexplained reason I decide that since I'm right handed - not that it really matters - the port should be on the left side. Only to realize later, that's the side I sleep on, and the car seat belt rides right up on it. Hey, it sounded like a good idea at the time. Oh welllll...
Tuesday is a particularly full day where we will be racking up the
mileage starting at:
8:00AM
With another Covid Test at Memorial prior to Block’s Endoscopy and PEG Tube Procedure which is scheduled for Friday.
11:00AM
Then it was a rush from Hollywood
to Aventura for a meeting with Dr. Jeremy Gallego-Eckstein, General Surgeon
regarding the Gall Bladder Removal, who, after hearing the December 1st emergency room saga, immediately schedules surgery for the
following Tuesday so as to not create complications with Friday's PEG Tube insertion.
2:00PM
Next, another race 40 miles further south to Kendall for the meet with:
 |
| Dr. Adeel Kaiser |
at the Miami Cancer institute at Baptist Hospital to discuss the
possibility of Proton Beam Therapy and all its pros/cons.
After reviewing all the data
available from the 2007 radiation treatments that Sri at Memorial had transmitted to
him, he agrees that I am a candidate for the Proton Beam. But, since I want one
last shot at considering Surgery first, we leave the final decision for after
Block’s Endoscopy/Ultra-Sound to determine the exact location.
I REALLY want this bugger cut out... NOW!
Wednesday 10:00 AM
Finds me with my Primary
Physician Dr. Scott Oxenhandler getting a Medical Clearance for the Gall
Bladder Procedure.
Thursday 9:00AM
I'm back with Dr. Zikria for blood work and to discuss the Chemo plan.
Only… she has just heard from Sri, who was informed by Dr. Kaiser at Baptist, that he had referred my case to the Baptist Head & Neck Oncology and Thoracic surgery
teams for an evaluation regarding surgery.
All agree that we should wait
on Block’s Endoscopy to assess whether Surgery may still be an option before
proceeding with any other plans.
Thursday 1:00 PM
Sees me on the exercise machines
with Eileen my favorite PT therapist.
Actually my only PT therapist this time around.
However, after further evaluation,
in light of the PEG tube, chemo port and the potentially complicated schedule involving the ensuing Chemo/Radiation Therapies, which we anticipate will have me pretty fatigued as in the past, she decides we need to suspend the therapy
sessions until after all this drama so as to avoid injuring anything else.
So much for relieving my Neck
issues. If I survive everything else, we can look to start back then.
Whenever THEN is.
Friday 9:00AM
And I'm at Memorial Hospital West
where, under General Anesthesia and in LA LA Land [not the Ryan Gosling-Amy Adams Movie], Dr. Block is shoving all sorts of endoscopic stuff down my throat,
including the PEG tube, using the spot of the previous tube in 2007 to stick
it out my side.
All went well and I was back home recuperating by 1:30PM, surprised that I wasn’t feeling like I had just gone 10 rounds with Mike
Tyson.
Side Note:
Unfortunately, the “En-Fit” feeding valve
on the PEG tube didn’t match the 60ml universal feeding syringe they sent me home
with. After the usual research, I eventually replaced the useless valve with a universal valve I
found online.
Yeah… Go ahead and say it Rene… I'm
not happy unless I'm “jerry-rigging” something.
Saturday 12 Noon
And it’s back to Memorial for more
Covid testing in preparation for the Gall Bladder Procedure next Tuesday.
I am now on a first name basis
with all the nurses of the Memorial COVID SWAB SQUAD who suggest that I should
be getting frequent flyer miles for all my trips there.
Thanks ladies. Please co-ordinate
that with DELTA Airlines Sky Miles program, would ya?
~ ~ ~ ~ ~
Captains Log
Week of 14 December
December 15 -Tuesday 8:00AM Comes…
and the Gall Bladder Goes.
In a groggy Post-operative state,
I can hear Dr. Eckstein on the phone assuring my wife that all went well and
what I should expect from all the air he had to pump into me to facilitate the
arthroscopic procedure.
Namely Lots of arbitrary pain spikes as the bubbles
move around alllll over my body. [See the 10 Round Mike Tyson note above.]
Oh Joy!
December 16 - Wednesday
Dr. Block calls with results of
the endoscopy, Esophageal Ultra-sound and the Gastric Biopsies he took while
rummaging around my insides.
The biopsies were negative, however while the endoscopy indicates an approximate location of the tumor plus or minus a millimeter or two, due to the previous radiation
scarring and the changing layers of the esophagus, the Ultrasound is inconclusive. The advanced fibrosis in the upper esophageal sphincter from the previous radiation limited
what he could see.
He re-iterates that from his viewpoint, surgery still
does not seem to be an option at this time without an laryngectomy as well but has arranged
a consult with Memorial Oncological Surgery ENT Dr. Carlos Perez-Mitchell to see if he might find a way to cut out the tumor without affecting the voice
box.
Since everyone is out for the
Holiday’s next week that Consult is scheduled for the 28th of
December.
NOW…
During all this, Brian’s friend
JJ, a Medical Recruiter in Orlando, suggested reaching out to his connections at
the Orlando branch of M.D. Anderson, one of the Foremost Cancer Research and treatment
centers headquartered in Texas, to see if there might be a new cutting edge
surgical or therapeutic procedure, and a team either in Orlando or Dallas, that could facilitate removal of the tumor without touching the voice box.
Dr. Block also offers to reach
out to his connections at M.D. Anderson, as does my High School classmate,
Oncological Surgeon Dr. Carlos Suarez.
Yeah, I got everyone working
every angle possible. Hey, what have I got to lose?
December 19 – Thursday
Dr. Kaiser at Baptist calls to inform me that he has most of the previous treatment Data from Sri’s team. However, since 13 years
ago they didn’t have digital records as they do now - it's mostly paper and he
had to translate it to their system requirements. in the meantime he
schedules a CT Simulation Scan for the 29th to better identify what
we are shooting at and where, While he awaits a little more information to begin formulating a treatment plan.
And of course, since the CT SYM is
a PROCEDURE, I need to get another Covid Test on the 23rd - this
time at Baptist.
Try as I may to
convince them to let me get the test at Memorial [Hey… I am a frequent flyer
there] they balk as they don’t have access to test records at Memorial.
And since the procedure isn’t at Memorial, THEY won't test
me without an order from a Memorial doctor anyway.
December 23 – Tuesday
Sooo... we hike down to Baptist
for the Covid test, with the Grandsons in tow with plans to take them to lunch
after the test in Coconut Grove and for whatever else in we can squeeze in.
Hell, might as well make it a Family Outing.
We had a Great Lunch at Greenstreet's, and then a
visit to The Barnicle followed by Gelato on the way home. Grandson time is becoming much more precious in the scheme of things.
December 28 - Monday
Dr. Kaiser reports that he has received all the
data he needs from Memorial as well as Dr. Block’s endoscopy report and has
referred the case - one - last - time, to his ENT/Thoracic team at Baptist to evaluate
surgical options.
The Bad News:
They concur with
Dr. Block’s original assessment – surgery is not an option without affecting
the Voice Box.
I also meet with Dr.
Perez-Mitchell who also concurs with Dr. Block and the Baptist team.
The Good “News {?}:
They all concur
with Dr.’s Kaiser and Sundararaman – Proton Beam therapy in conjunction with a
solid Chemo regimen as prescribed by Dr. Zikria, is most definitely indicated as the most effective
treatment plan at this time.
OK Guys I get it:
SURGERY IS NOT AN OPTION!
Sheesh, ya can't fault a guy for
trying every angle.
Sooo... we need to get the show on
the road, and the M.D. Anderson exploratory option is also discarded.
December 29 - Tuesday
Time for the Scheduled Dosimetry Simulation. [Before you start your radiation treatments, you will have a treatment planning procedure called a simulation (SIM-yoo-LAY-shun). You will not get any radiation during your simulation. During your simulation, your radiation therapists will take imaging scans. They may mark your skin with tiny tattoo dots.]
This is where they take CT images with iodine contrast to simulate and insure the accuracy of the treatment field. It
is also where they fashion a heat softened Nylon Mask that they mold to every
contour of my face and upper body along with a custom molded foam back, head and shoulder support. These will be used to stabilize my whole upper torso when they bolt the mask and me down on the
radiology table to keep me perfectly aligned and immobile during the upcoming
treatments.
They then take “Port Films” during the SYM to mark the target points to be
used in further refining the alignment for the treatment plan.
The mask used at Memorial in 2007 just covered
the top of my head to my chin and I was bolted to a flat table for treatment with no molded head, neck and back support.
This mask at Baptist extends down my chest
to just below my pecs immobilizing my head, shoulders and upper thoracic area
on the molded back brace.
The Photon Beam used in 2007 “Cooked” me with a very broad beam from my nose to my shoulders from 9 different angles - 360 degrees
around my neck and head.The Proton Beam
operates in Millimeters, and they will be precisely aiming at 3 different
angles with a span from 8 to just 20 centimeters below my oropharynx and they REALLY don’t
want me moving.
January 4 - Monday
After evaluating the final batch
of data from Memorial, Dr. Kaiser orders a final MRI in an attempt to locate the tumor as accurately as possible. The MRI ordered by Dr. Burnett for my
cervical evaluation was too degraded a my chronic sinusitis and post nasal drip caused me to cough too much and move during the process.]
The MRI Team at Baptist were great
in giving me a heads up so I could cough and clear my throat just to before each scan segment started to minimize movment during the san.
January 5 – Tuesday
Dr. Zikria has
finalized the Chemo Plan and is waiting for Kaiser to get his plan together so they can co-ordinate the Chemo start date with the Proton start.
~ ~ ~ ~ ~
Captains Log
The week of the 11 January
Involved Blood tests and another
medical release from my Primary Care Physician Dr. Scott Oxenhandler to clear
me to begin the Proton Treatment which is finally scheduled to begin January 20th.
Dr. Kaiser has determined the
most effective treatment plan involves twice a day sessions on - “the Rack” as I call it - 6
hours apart. This will require getting
to Kendall early in the AM and back again in the afternoon for the second
dose.
My ever caring and supportive SUPER wife Illy
insists that she travel with me daily, in the event the treatments start to
knock me out as they did in 2007. This
is going to take some planning as we struggle to figure out what to do in the
Kendall area for 6 hours between treatments versus driving back and forth to Hollywood on that 30
mile long - perpetually under construction parking lot – a/k/a - the Palmetto Expressway
[FL- SR 836]
~ ~ ~ ~ ~
Captains Log
The week of 18 January
January 18 - Monday
With Dr.'s Kaiser and Zikria finally setting treatment plans and start dates, my first Chemo session takes
place in the Memorial Regional Infusion Lab.
Interesting Side Note:
The Infusion Lab is in Suite 270 [second floor] of the Memorial Cancer Institute. However, due to Covid restriction, you can't get there from the usual side entrance and elevators downstairs in the Memorial Cancer Institute treatment wing. You have to go across the street to the Medical Office building and take the elevator up to the 3rd floor, trek to the end of the hall - that actually crosses over the street below - and down the elevator there to the 2nd floor and the Infusion Lab.
I was greeted by the most delightful Lab Manager Debbie Musiker who does an OUTSTANDING Job running a pretty cool place where some
truly caring and dedicated nurses - Dominique, John, Farrah, Alina Amy, Reja, Darlene and Chastity to name a few - do their best to make the process as bearable
as possible.
Illy gets to go along on the
first session to see where and what I will be going through every Monday for
the next 6 weeks. This is where I meet
Nicole Bradford, RN who administers my first dose of a handful of preparatory
drugs, to help me handle the combination of Carboplatin and Paclitaxel [Taxol]
without too much nausea. These Toxic Cancer Killers are formulated on the spot in their state of the art pharmacy lab based on my body weight and temperature at that time.
Warm blankets, hot soup,
sandwiches or wraps if you want it and lots of great, comforting vibes from the team in the
lab are in abundance. There is even individual
mini TV’s for each recliner in semi-private cubicles.
Knowing it would be a 3-4 hour
session I brought my laptop and iPad to help kill the time. At least I can get a little day trading in as
well as keep up with this journal – as it all happens.
January 20 – Wednesday
Finds us at Miami Cancer Institute at Baptist Hospital.
Rather than starting right in with 2-a-days, the first of
the Proton Treatments is scheduled for 2:15PM in Proton Gantry 1 named
POSITIVE, and is expected to be longer than usual to make sure they have the plan
fully in place.
The other Gantries are named:
#2 OVERCOME & #3 HONOR, all fed by a gigantic cyclotron named EMPOWER that generates the
Proton beam.
Periodically, depending on the amount of treatments going on at the same time in all 3 gantries, we may have to wait on Empower to gear back up to get the beam.
There is an electronic sign in the waiting room that
periodically gives status updates of: on time or delayed by [x] Minutes, which
may, or may not, get updated in real time.
We are greeted in the waiting room by Lead Therapist
 |
| AMANDA |
who takes us back to the Gantry 1 [Illy gets to come along to see this marvel of technology and take pictures of where I'll be spending the morning and afternoons ]
and introduces us to:
 |
| AHSAN |
 |
ANA
|
 |
STEPHANIE
|
 |
| NESTOR |
 |
| SHALELIA |
 |
| KHALID |
all who at one time or another will be bolting my head to
the "Rack" under the enormous device that will project the beam at its target and monitoring the procedure.
They are THE TOPS and in various combinations will be with me
through both AM and PM treatments.
Gantry 1 – is an enormous machine
with a Proton projector suspended in a circular, tunnel like structure that
rotates 360 degrees around an articulating table which can position me in
infinite number of angles to facilitate accurate beam targeting and penetration. The table is so sensitive that if I even twitch or cough too hard, it Dings "ERROR" and stops. This is my position for the next 6 weeks.
Since I have to take off my shirt
in a room [which I swear is kept at 50 degrees] to keep the machines cooled, warm blankets are
available to make the ordeal a bit more comfortable before the mask, and my head, is bolted
down to the table.
AND... they will play my preferred musical selection as a distraction. Sinatra and Light Jazz, of course.
The treatment begins by lining me
up with lasers on all sides to lock in on the markers on either side of the
mask. One at the neck level, one on my chin and one at the top of my sternum.
This is followed by imaging from
3 different angles to insure that the beam positioning meets the plan and all
is in sync.
Remember, they work in
millimeters and take great pains to insure that I am perfectly aligned, constantly tugging and nudging me into position.
All sorts of robot arms and scanners come out of the walls of the Gantry to
facilitate the alignment. This needs to be done each time I mount the table.
Next the projector is rotated
down so the team can insert a special lens
That will help to focus the depth of the first phase of the treatment when the projector is rotated directly above me. The “rack” then adjusts to the proper position as the Projector lowers and begins the first dose.
The whole thing then rotates to
my right side to remove the special lens and then rotates up at a certain angle
for dose two, then to my left side for the final dose as the “Rack” re-adjusts my
angle and position.
Of course with this super cold
room, warm blanket not withstanding, you just know that my sinusitis kicks in
and the ensuing coughing and heavy swallowing is making “Please Keep Still – Chuck” very challenging.
In the weeks that follow I finally figure out
the best lead time co-ordinate my anti-histamine nasal spray with my scheduled
“Rack Time” to keep the post nasal flow to a minimum.
The first session goes as well as can be expected and after a post treatment meeting for evaluation with Dr.
Kaiser and his team of:
Angelique Morris, APRN
and Janneth Gilgori,
his Medical
Assistant, we head home with a schedule for the rest of the week.
On the Bright Side…
Apparently, Illy has kept some family
members updated on my condition and upcoming ordeal. And, upon hearing through the
MONTALVO "Family Grapevine" of our
dilemma of what to do for the 6 hours between treatments, her Primas [“cousins”
in Spanish] Luly and Belkys, graciously invited us to spend the down time in Luly's spacious home near Sweetwater with a private bedroom for me to catch a nap if need
be. This is a lot closer than having
to drive back and forth to Hollywood and is a big load off our minds.
Thank God for La Familia!!!
The weeks that follow look to be challenging
but will become more manageable as we move into a daily routine that starts with
a jolt from bed at 5:00AM to be in the car by 6:15 for the race to Kendall.
Fortunately the Palmetto Parking
Lot… err… uh…. Expressway, has an express lane and for $1.50 Southbound, you
can breeze past the perpetual car jam that backs up from 103rd
street to 154th street and sometimes as far back as around the bend at 167th Street.
Illy says it’s like she was back at
work all over again when she used make this trip every day for the last 20 of
her 35 years at BAPCO albeit on the Fla Turnpike.
At 70+ mph, barring heavy
traffic, the trip takes a little under 45 minutes and we pull into the parking
garage at Baptist with enough time for Covid processing at the entrance.
Due to the Covid Crisis, every
day, regardless of being there daily, one must get a temperature check at the
entrance and be escorted to a clerk in the converted Cafeteria that asks the
same 7 questions regarding contact with individuals with Covid-19, fever,
diarrhea, etc. before being allowed in.
Then it’s a hike, nearly 3
football fields – actually 854 feet [after high school I briefly worked as a
land surveyor and can still pace off distances pretty accurately] past the
Photon Section to a hallway at the opposite end of the 1st floor
connecting to the Proton Beam Therapy and Research Building where I'm issued my
daily wrist band and sent to wait on my team to come get me for Rack Time.
Note to Baptist Management:
Rather than printing and issuing
a new wristband to a repeating patient every time they check in for therapy,
take a page from Memorial Regional's program in Hollywood. When I went through my ordeal in 2007 they
issued a card with a bar code that I scanned every time on entry which
automatically checked me in and notified the Therapist that I was in the
waiting room. Think of the money saved
on bracelets and repeat printing of patient Id’s.
Probably enough to provide a Cafecito
for all the staff lining up for one in the cafeteria every morning. 😁
January 21 - Thursday
We begin our daily routine with
the pre-dawn race to Kendall for my first Treatment. The Gantry 1 team has been alerted that after this
week they will have a few challenging cases including infants that need special scheduling. So as to not delay
my time on the rack, which happens often when treating the kids, they have
requested I be the first one in at 7AM and hope to have my 2nd dose
in the early afternoon to get us on the road home early enough to avoid the
drive time jam up. They really try to
accommodate as much as possible.
After the morning session we look
to have breakfast somewhere on the way to Luly’s. Today we settle on trying the Chuck Wagon on 117th Avenue for
some oversized pancakes and eggs. For
now they go down fairly easily.
Then it was off to Luly’s house and
Belkys’ REAL Cafecito and various delectables that she delights in spoiling me
with until it’s time to head back for dose #2 and then home.
January 22 – Friday
Pretty much the same as Thursday,
on the road by 6:15 for dose one and today we tried Waffle House on Sunset. It was
so much like eating in a Refrigerator as to be uncomfortable. Scratch that one.
After several hit and misses looking for a decent breakfast stop on the way to Luly’s, including the cute little bakery/café up the street from the hospital, we settle on Sergio’s at 107th and Kendall for our daily stop. Great breakfast choices, excellent service and reasonably priced.
After a few hours at Luly’s we
were back at Baptist for round 2 and then on the Palmetto Parking lot for the
ride home.
~ ~ ~ ~ ~
Captains Log
The weeks of 25 January – 12 February
The weeks that followed were pretty similar, starting with
the early morning Monday race to Kendall for the AM dose and back to Hollywood
for Chemo.
Tuesday Thru Friday two-a-day doses with down time in between
at Luly’s.
One minor hiccup in the routine was February 10th when we got a call from Amanda [head Therapist] on our way in for the afternoon dose. They were having a problem with super sensitive table in Gantry #1 and there would be a slight delay while they worked on it.
After arriving at the re-scheduled time, it was a bit of a wait and, upon finding the repair might last awhile, they reshuffle appointments and move me to Gantry #2 for the afternoon treatment.
These guys are SOOOO GOOD!
AND THEN…
Amid all this, Illy had been
diligently scouring the internet to see about getting the Covid-19 vaccine and
stumbles on a message from the City of Hollywood that allows her to register us
for shots to be administered at the Carriage Hills retirement community on
Sterling Rd in North Hollywood. WOW what
a find.
We get schedule for our first
dose on January 31st.
Expecting long lines we get to
Carriage Hills an Hour ahead of time and low an behold, we park, walk up, get
forms from the National Guard who are monitoring the site, and within 10
minutes he have our shots and are sitting out the 15 minute wait to head
home.
Our second dose is set for
February 14th [our Valentine’s Day Present] and the process was just
a quick.
~ ~ ~ ~ ~
Captains Log
The week of – 15 February
This will be a short week – Monday thru Wednesday - as the
Proton Gantries and Cyclotron will undergo periodic maintenance Thursday thru
Sunday.
That said, it’s still the same routine:
Monday - Radiation at Baptist at 7AM and Chemo at Memorial
in Hollywood at 1PM, with 2-a-days Tuesday and Wednesday.
By now my throat was starting to
stiffen up and swallowing was becoming a bit more difficult but not impossible.
Dr. Zikria prescribes SULCRlAFATE
[normally used to treat ulcers and upset stomach] to cool down the heat going
on inside along with “Magic Mouthwash” [equal parts of Lidocaine, Benadryl and
Mylanta] to swish and Swallow to numb the sore spots.
But Hey... I'm also getting a helluva tan around my throat.
~ ~ ~ ~ ~
Captains Log
The week of – 22 February
There is a light at the end of the tunnel and it apparently is not a
freight train!
Monday the 22nd sees our last run to Kendal and Back for the Last
Chemo Round in Hollywood.
Tuesday and Wednesday have our last 2-a-days on the
Gantry #1 RACK and Voila…
It’s OVER!
Well sorta – the worst is yet to come, but more on that
later because…
Now I get to RING THE BELL signaling the End of My Treatments.
And, after a final treatment
follow-up with Dr. Kaiser and the whole team, we all traipse out to the Lobby of the Proton Therapy Building for a Picture at the Bell.
 |
| My Team and Igor [The Mask} |
And of course, since I never got
to ring a bell 14 years ago after that little trip down PHOTON Radiation Lane in
Hollywood, Janeth - Kaiser's Medical Assistant - and my ever-available angel on
speed dial, suggests we trek on down to the PHOTON lobby and Ring the bell
there…
and WE DID!
Hugs and Tears around with these
wonderful caring folks [more on them later] and Illy and I grab a Cafecito to
savor the victory out by the Koi Pond, where…
Wait for it…
Wait...
Wait…
OK
There is an even Bigger Bell outside the entrance,
soooooo…
Hell Yeah, you know I rang it
TOO - Loud and Long!
~ ~ ~ ~ ~
Captains Log
The weeks that follow
Now as I said above, the back
half of this whole Deal [Remember “The Deal”?] begins.
HEALING
This is where we'll see just what
damage has been done and it doesn’t take long to show its ugly self.
By now, after 40 fractions of
PROTON radiation and 6 rounds of Chemo, the inside of my esophagus is expected
to resemble raw sausage, or sumpthin’ like that.
Eating by now has become a
challenge but I still have not resorted to using the PEG tube - Stubborn Little
Sicilian man! - and some things feel like they are hitting a speed bump on the
way down.
Additionally, although the Beam
Treatment Field was significantly below the Epiglottis, the cricopharyngeus
muscle and the whole process of swallowing that it manages, i.e. deflecting the
epiglottis and elevating the esophagus simultaneously with the backward
movement of the tongue, is all out of whack and some stuff keeps getting caught
in the middle, keeping the epiglottis from deflecting properly and I asperate and choke. Even a sip of liquid to start the process
sometimes works and sometimes it gets blocked too and, well, the result ain’t
pretty.
Picture the “liquid spurting outta
the nose” thing when your grandson tells an inappropriate joke at Thanksgiving dinner that you weren’t expecting
while you have a mouthful of beer.
Yeah… that sorta thing.
Sooo… ya take it V E R Y slow
and easy.
Of course all this stuff going
down the raw road to digestion manages to irritate everything and by Sunday the
28th of February, I start to cough up what appears to be bloody bits of
esophageal lining, or maybe it’s Tracheal lining, or whatevah.
March 1 - Monday
At our first Evaluation with Dr.
Zikria after treatments, nobody seems to know what the stuff I'm couighing up is, but:
“Not To Worry – It’s Natural considering your just a few days after
treatments”
Oh… "it’s Natural"… that’s good to
know… NOT!
But just in case [with my fear of
having developed a Fistula, or hole between the esophagus and trachea] Dr.
Zikria orders a CT Scan “STAT” to rule out any issues.
The scan comes back OK so,
again, “Not to Worry!”
Yeah right… you do know who you’re
talkin’ to Doc, right?
The newly anointed “Patron Saint of Paranoia” – That’s
who!
So… after a few doses of
Sucralfate and Magic Mouthwash prior to eating and before bedtime, the lining shedding subsides.
Until… just before the next
evaluation with Dr. Zikria on the 15th where another wad of
something coughs up.
“Not To Worry – You’re HEALING and probably still a bit inflamed. But just in case, let’s try some Steroids.”
So a “6 day Dose pack” of
dexamethasone is ordered to help reduce the inflammation.
March 15 - Monday
A Follow up with Dr. Zikria to
check blood work etc. and we decide another short round of Steroids are in
order to help reduce the ongoing inflammation and discomfort.
At the same time a “Port Flush” is scheduled to make sure the Chemo port is flowing properly in case we ever have to use it
during the 2 years they want it kept in.
Yeah, I get to have a semi-permanent lump under my shoulder for 2 years, or more…
Oh Joy!
OK... I guess it's time to explain the title.
Back in 2007, when I underwent the first Radiation/Chemo Ordeal, I managed to lose 40+ pounds of unwanted weight, and was able to get down to my best fighting weight ever - 155. Much to the dismay of my doctors at the time.
Hence the Title of that saga:
NOT THE DIET I PLANNED!
{Now referred to as:
N.T.D.I.P. Part I]
Sooo... having put much of the weight back on since then, I was seriously hoping - again, much to the distress of my current doctors - to drop at least 20+ pounds this time around.
Uhhhh... No! Didn't happen.
It seems that since I have been actually eating solids, albeit in small bites, and not having to depend solely on Shakes and stuff that I could push down the PEG Tube, I have managed to keep most of the unwanted 20+ pounds.
And since the Doctors wanted me bulking up on puddings, and high protein high calorie shakes and other stuff in anticipation of some weight loss, I almost added poundage until I started scaling back on the "keep your Weight Up" program.
Thus the Title of this Part II:
NOT ANOTHER UNPLANNED DIET
[Now N.T.D.I.P. Part II}
~ ~ ~ ~ ~
Captain's Log
March - May
March 15 - Monday
A visit with Dr. Zikria for labs and to schedule another port flush. It's also time to schedule a PET CT Scan for the 30th to see:
A. If we GOT it ALL
B. To insure it hasn't spread anywhere else.
Ya never know.
Because of a variety of issues the PET gets rescheduled to April 20th, which everyone agrees is better because they presume that I'm still "Glowing" from the Radiation and the results would be "IFFY".
April 20 - Tuesday
The PET CT happens and by Wednesday we get the Results:
ALL CLEAR... for now. I'm still glowing a little but it's decided it's time for Dr. Block go to in on the 27th for an endoscopic inspection to see what, if any, real damage has been done.
And of course... It's "a Procedure", so guess where I'm going again?
Yup, to visit the Covid Swab Squad.
The nurses there just giggle and hand me a Yellow Sticky with "1000 Frequent Flyer Miles" in Pink Ink. Their sense of humor is refreshing considering all that our Front Line Workers/HEROES are enduring during this pandemic.
April 27 - Tuesday
Dr. Block does his endoscopic exploration and takes biopsies that come back negative.
YEA!
During the process he determines that the "Stricture" caused by the Trauma of the Radiation, has my esophagus narrowed to just about 1/2 inch or 8[+/]mm. He has difficulty using an Adult sized Endoscope, resorting to a Pediatric scope to survey the whole esophagus down into my stomach. As such he decides we need to do the first of several Savary Dilatations to expand the esophagus and this is scheduled for the Friday - May 14th.
What, you might ask is:
Savary [Dilatation] Dilation ?
Savary-Gilliard hollow-centered dilators, called bougies [Booo-Gees] are used to dilate esophageal narrowing over an endoscopically placed spring-tipped guide wire which is advanced into the stomach under fluoroscopy. The size of first dilator used is chosen based on the initial endoscopic assessment of luminal caliber [the diameter of a lumen or tubular canal].
May 3 - Monday
Time for more Labs and Dr. Zikria, who is overly excited about my progress, the PET Results and Dr. Block's Plan... and.... and...
Did I mention, she's always excited, which in the scheme of things is very reassuring and welcomed.
Oh... and another Port Flush is scheduled the day before the Dilatation. I wonder if I get frequent flyer miles there too?
[Debbie Says, "Uhhh... NO!]
Speaking of...
Another Swab Squad trip has to happen before the Dilatation, but Hey... I have the Drill down pat.
Head back, drop my mask just below the nose,
brace for the 10 foot long swab they use to check my throat
[ I swear, the swab is 10 feet if it's an inch], and I'm in and out in 10 minutes. No extra mileage, or even a lollipop this time.
May 14 - Friday
After a port Flush on Thursday, I report to Memorial West at 9AM for an 11AM dilatation by Dr. Block.
The prep team at Memorial West are the TOPS. Warm blankets, gentle IV insertion and lots of positive vibes.
I get rolled into the Endoscopy Suite and Dr. Block proceeds to do his magic, best described here in his Operative notes:
The patient was taken to
the endoscopy suite and following a preprocedural briefing IV sedation was administered.
He was turned into the
left lateral decubitus and the upper endoscope advanced to the oropharynx.
The esophagus was
intubated and the scope advanced to 18 cm where a circumferential stricture was
encountered.
The Savary wire was
advanced into the stomach under fluoroscopy. Savary dilators from #10, 12 and
then 13 were advanced under
fluoroscopy. Blood was noted on #12 and 13. The scope was reintroduced and
advanced through the stricture.
Mucosal tears were noted
with no indication of perforation.
The scope was advanced
through the esophagus, stomach and into the duodenum.
The stomach and duodenum
were normal. The GEJ was at 40 cm without evidence of hiatal hernia.
The scope was
withdrawn and removed.
The patient was awakened
and transferred to recovery room for postprocedural care.
The patient tolerated
the procedure well and there were no complications.
All this to say, he spread the stricture out to about 13mm, which is pretty good, for now.
Because my esophagus had shrunk a bit from his first exam, Dr. Block wants to re-dilate me again but will wait to see how well I tolerated the procedure.
In the meantime, he has entered orders for me to get evaluated for Speech therapy, much the same as back in 2007, to help facilitate healing and swallowing.
Now while all this is going on, the PET Scan of April 20th referred to indications of Emphysema. Everyone [ME] panicked and we, Dr. Zikria and I, decided it wouldn't hurt to see a pulmonologist, just to check it out further.
~ ~ ~ ~ ~
June 15 - Tuesday
An appointment with Dr. Benjamin Gittler, and subsequent Pulmonary Function Tests on the 22nd, showed that the Emphysema was a long term result of previous years of smoking and was pretty consistent over many years, with no advancement based on a CT performed in 2015.
Whew... another bullet dodged.
So... Now about the Speech therapy.
June 16 - Wednesday
To asses the need for Speech Therapy and a subsequent plan of care, Dr. Block schedules a MBSS [Modified Barium Swallow Study]. This is where I would swallow various liquids and soft foods with Barium added to asses how well my Crycopharyngeus was functioning and what, if any issues were occurring as I swallowed in front of a fluoroscope. A pretty neat process, which I had undergone twice in 2007/2008. This time it was performed by Michelle Garmizo at Memorial South. The results indicated significant damage to the esophageal sphincter and Cricopharyngeus Function, thus a need for Therapy.
As my previous Speech Therapist Karen {Chase} Rose had since moved on, the results were re-evaluated by my New Speech Therapist, Heather Henry, who proceeded to draw up a treatment plan for Dr. Block to approve and which was to begin ASAP.
As opposed to the therapy in 2007, there would be no Electric Tensors attached to my throat, YEA!.
However there will be a series of swallow exercises - Effortful Swallows and the Mendelsohn Maneuver, along with the use of a breathing apparatus called the EMST 150 [Expiratory Muscle Strength Trainer] to re-train and strengthen the muscles and upper esophageal sphincter to work properly.
Therapy would proceed from July through Sept 1-2 days a week, with most of the exercises done at home. Further evaluation will occur in early September to determine if more therapy is need after that.
July 12 - Monday
A previously scheduled PET Scan comes back...
ALL CLEAR!!! and again, on the 19th Dr. Zikria is excited, [so am I] so we celebrate with another Port Flush in the Chemo Lab and some Chicken Soup.
Hey... ya take the celebrations however they come.
Nothing else is gonna happen for a couple of weeks because I will be up to my neck in final preparations for my 60 year High School Reunion which I have been in the process of producing over the last 2 years. It was supposed to take place in May of 2020 but the Pandemic had caused several postponements and I was anxious to see it to a successful conclusion.
The Reunion Weekend came off Waaaay better than I had hoped and now it was time to get on with my recovery.
~ ~ ~ ~ ~
Captains Log
August 2021
Therapy resumes with Heather, who is a serious task master, exhorting me to keep up with my exercises and EMST, knowing that the week of my Reunion, nothing much was gonna happen.
Additionally, Dr. Block has another Savary Dilatation scheduled for the 30th so guess where I was headed... Yup - The Swab Squad.
Only this time Memorial West requires I trek out there for the Nasal/oropharyngeal reaming. And of course, lacking the sense of humor of the Memorial Regional SWAB SQUAD, they know nothing about Frequent {Swab} Flyer Miles. Oh welllll...
July 30 - Tuesday
Dr. Block performs more of his Savary-Bougie magic and gets my throat dilated to 15mm, but the minor shrinkage from the last dilation has him concerned enough to schedule another Roto-Rootering of my throat in 3 weeks.
August 18 - Wednesday
So in between Therapy Sessions with Heather, I'm headed once again for... The Swab Squad.
Only this time I've managed to sweet talk Mariam in Scheduling [yeah we're on first name basis by now] into letting me be reamed... err... uhh... swabbed, at Memorial Regional [around the corner from the house] to save another trek 10 miles West and back for a 5 minute swabbing.
August 20 - Friday
Dr. Block is out of town so his partner Dr. Francisco Antonio Tarrazzi comes off the bench and manages to stretch my esophagus to 18mm, the biggest Bougie they have. Since everything down there is still a bit traumatized, the Bougie manages to make a small tear in the mucosa so I'll be on liquids and shakes for about a week.
Not to worry, Block will re-evaluate in 2 weeks and we'll see where we go from there.
When I call his office the following Monday, Dr. Blocks APRN Carrie informs me that due to the recent Covid spike, they were restricting office visits and all appointments were to be "TeleMed".
Uh... not what I wanted to hear. How are you gonna evaluate the tear in my esophagus over a long distance video?
She checks with Dr. Block who advises we wait 10 days to see how I feel and/or if I develop any side-effects before we schedule anything.
~ ~ ~ ~ ~
Uncle Chuck Note: > We
are now 1 year since my first symptoms in August 2020 that started this whole
ordeal and truth be told, I'm pretty happy, if not totally amazed that I am
this far along in recovery without most of the pain and recovery truma that
I experienced up to this point in 2007.
~ ~ ~ ~ ~
Captains Log
September 2021
September 2
Time to see my Primary Doc - Scott Oxenhandler for my annual physical and bring him up to speed on the past few months. I also advise him that since the dilatation and tear, I have been experiencing serious gastric distress, GERD etc. I was concerned that it might have something to do with the esophageal tear, since it started right after the procedure of 20 August. Additionally I was having more pain in the back of my throat that radiated into my ear.
He suggests I schedule an immediate consult with both my ENT Dr. Jaguan and Dr. Maratchi at Gastro Health to evaluate both issues.
September 15
I couldn't get into see Dr. Jaguan until now as he is only in Hollywood on Wednesday's. His diagnosis for the sharp pains radiating from the back of my throat to my ear is "referral nerve pain" and prescribes Gabapentin [an anti-convulsant - seizure drug] but warns it may make me out of sorts.
Uncle Chuck Note: > YES IT DOES!
I'll wait to see Maratchi before I continue with this stuff!
September 20
I meet with Dr. Maratchi who gets a bit annoyed when I report the dilation and tear in the esophageal tear. He schedules a:
XR ESOPHAGRAM W WATER SOLUBLE IODINATED CONTRAST
for the 23rd to check for leaks and possibly what's causing the gastric distress.
The scan comes back clear, nothing to worry about and he ups my once a day pantoprazole to Am and PM for 14 days to see it clears up the gastric issues.
I also elect to discontinue the Gabapentin, the phantom ear pain hasn't presented since my visit to Jaguan.
It did help a bit with my neck pain but not enough to walk around dopey all day.
September25
The speech Therapy authorization runs out on the and Heather has to get Dr. Block to Order more sessions so we have to wait for that to happen before she can put in the plan of care for the insurance to authorize.
Truth be told, Florida Blue has been pretty good about authorization and paying most of my costs so I probably shouldn't complain too much but...
We are constantly at the mercy of the insurance companies for authorizations and what they will and won’t cover entirely, so don't get me started.
~ ~ ~ ~ ~
Captains Log
October 2021
October 4
And I'm in the tunnel at P.E.T. Imaging for a scan in preparation for my next evaluation and port flush with Dr. Zikria, which won't happen until the the 19th.
We've got a little runaway planned for a week with Brian and Terri on Santa Rosa Beach in the Florida Panhandle for some Gulf Front R&R and Golf.
The PET Report shows up on the Patient Portal and on the 5th my Wake Up Call is from Dr. Zikria all exited about the Great Results.
ALL CLEAR!
Her concerned, compassionate, always Excited spirit is so GREATLY APPRECIATED.
It also manages to start my weeks planning for the trip with bang!
The Trip was FABULOUS, just what we needed after a very stressful year. The golf wasn't too shabby either, considering it was my first outing in over 2 years.
October 19
Sees me at a Very Emotional Follow up with Dr. JZ, who is still excited about the PET Results and with hugs a tears around I head down to the infusion lab and port flush.
We have decided to keep the port in until the next PET and Follow Up in February. If we're still All Clear then we'll consider having Dr. Block take it out, and maybe do a little dilatation at the same time.
Due to Heather's and my individual R&R schedules, waiting for Dr. Block to get back from his Vacay to order the new sessions, and then waiting on Fla Blue to clear it, speech therapy doesn't get started again until the 26th. The rest of the allotted sessions are scheduled thru to December 27th.
And of course just in time for another scolding from her when I report that I have been pretty lax with my exercises.
~ ~ ~ ~ ~
Captains Log
November 2021
The month opens with 2 Therapy sessions and for the most part we're at the point that we aren't doing anything more in the sessions that I can't do at home, with a bit more self-discipline.
So on the 8th, Heather and I agree to evaluate my progress mid-month, schedule an MBSS and maybe a FEES to look for improvement and to determine if further sessions are necessary.
I can feel the muscles and throat tightening up from fibrosis and know that massaging and exercises will be my lot for the rest of my life. But for the most part, swallowing is still coming along fine.
And Hey... I'm still on this side of the Dirt.
~ ~ ~ ~ ~
Captains Log
December 2021
December 14
And I'm at Memorial West with Nita Singh, Speech Language Pathologist, for the
FEES STUDY that shows significant retention of the test liquids and foods in the
vallecula ever after several effortful swallows. It looks like the epiglottis is not fully deflecting and some penetration and aspiration to the vocal folds is evident.
Additionally, a capsule I brought to test swallow seems to be still hanging up in the trouble area and it is surmised that the tear from the last dilation may have healed abnormally possibly forming a
diverticulum.
She recommends another endoscopy and to see if that is in fact the issue. Perhaps Dr. Block can stich it up, or sumpthin' like that, and maybe a re-dilation.
Since I needed to send a note to Dr. Maratchi regarding some gastric distress that I was having, I also included Nita's assessment to solicit his opinion.
Another 14 days of 2-a-day Protonix was prescribed along with his agreement with the assessment and plans to have Dr. Block scope it out for further action.
We interrupt for a Quick note on Heather Henry
Let It Be Known...
Heather Henry is one Talented and Gifted Speech Language Pathologist. A Dedicated clinician, her instructions and guidance were immeasurable. She kept me on task, when I slacked and was quick to handout the "Atta-boy's" when appropriate.
I couldn't have asked for a better Guide through this phase of my rehabilitation.
She gets an Exemplary "6" out of 5 STARS that all Dedicated Memorial Team members deserve.
December 27 Saw the last Visit and subsequent Plan of Care Evaluation with Heather.
Rather than have Dr. Block write a new Rx for more visits into the New Year, we determined that, given some better personal discipline on my part, I could pretty much do at home everything we're doing in the therapy visits. If, down the road I feel that I could use her for more Rehab, we'll circle back as needed.
Now...
Since I had a Cruise planned for December 30 - January 9, [yeah in the middle of the Covid pandemic this crazy Sicilian with a compromised immune system was gonna go on a floating petri dish - I'll get into why later] getting the scope and possible dilation scheduled before the trip was not gonna happen as Dr. Block was out of town the week before and after Christmas. So we had to schedule it for the January 14, as I would need ANOTHER FREAKIN' COVID TEST on Tuesday the 11th, in between a PET scan and a Dental appointment. .
YAY... more frequent flyer miles!
Yeah, my January dance card was filling up fast.
Speaking of Covid Tests... it so happens that I would also have to get a Covid Test 48 hours before boarding the Jewel of The Seas as dictated by Royal Caribbean Cruise Lines. Which was interesting because the Hospitals require one 72 hours before a procedure, while Royal wants it no sooner that 48 hours before boarding any of their ships.
I could go into what a hassle it was getting a Covid test with results in 48 hours amid the Omicron surge, but that's another tale.
Hey, Just for the fun of it though, you can read all about that ordeal... and the Cruise at:
So the month was a blur of Speech and Physical Therapy sessions amid Christmas and Cruise preparations, including the Covid test issue. [Yeah... I started back with Elaine because my cervical stenosis was causing some issues and I need to loosen up for the cruise - which, I suppose is what the cruise was supposed to do.]
~ ~ ~ ~ ~
Captains Log
January 2022
If you read The NOWAT, you'll be up to speed with the Cruise and all the fun, and not so fun happenings. But it was interesting...
Now it was back to the Real World as:
January 11
While waiting outside of the PET scan lab for my CD of the scan to send to Dr. Kaiser at Baptist, I first, get a ding on My Patient Portal App that the results were already posted, which read, in so many words...
"ALL CLEAR" - YAY!
And then, on the way across the street to the COVID TEST... I get a call from Dr. Blocks office that stopped me in my tracks.
Due the Covid-19 Omicron surge, Memorial Health System has ordered a hold on my Endoscopy and Dilation for the 14th and the would have to reschedule it for the 28th.
Now that would be fine except... you're gonna love this one...
While on the Cruise, the folks who coaxed my Lovely Wife Illy into getting me on a floating petri dish for some R&R {Seriously?!?} after my year long ordeal, informed her that since they are inveterate Casino types [read that gambling degenerates -just kidding Donna] and also Diamond Plus cruisers with loads of perks on RCCL, all their years of Shipboard Casino play won them 2 cabins on a 9 day Celebrity Cruise to the ABC islands of the Southern Caribbean [look it up] leaving January 21st and offered one of those cabins to us for only the port fees [$250].
Welllll now, tell the Dragon Lady [long story about the nickname] that she can get a *Free* 9 day cruise to the Southern Caribbean and, well now... you KNOW where I'll be January 28.
Not in the Endoscopy Lab at Memorial West with Dr. Block reaming away... Obviously!
Now where were we.... Oh yeah,
With the Endoscopy needing rescheduling, I have to scramble to cancel the Covid Test for the non-procedure before I get dinged as a no show, and figure out when we can reschedule the procedure for some time in February.
And of course just then, the phone rings with the Covid Test Scheduling lady wanting to reschedule the test for the 25th, not aware that I've got Dr. Block's office on the other line.
So I tell the Lovely Katrina - who by now I'm also on first a name basis - that I'll have to get back to her as we are in the process of rescheduling the procedure.
Back on the other line, Block's office, wants to do it on February 1st, but that won't work because of the 72 hour prior COVID TEST, and I'll still be in Aruba.
Sooooo, we settle on the February 4th for the endoscopy with the Covid Test set for the 1st. Maybe... we'll have to see what's up with the Admin Folks when we get back, and then I'll call Katrina.
January 18
After the FEES study back in December, Nita also had scheduled an MBSS for January after the Endoscopy on the 14th to get a better look at the swallowing issues. Even though the Endoscopy was re-scheduled we decided to keep our date for today and we could see the back up in the vallecula as well as a Barium Pill hanging up in the trouble area. This reaffirmed that the Endoscopy was necessary.
A fun note: Unbeknownst to us, the Radiologist conducting the MBSS was non other than Dr. Block's Ex Wife, who, after the Study, advised that since she had an inside track, so to speak, she would see that he gets and reviews the results STAT to plan his magic.
Did I mention that all the Folks in Memorial Health Systems are AAA+? [in spite of Administrative juggling of my procedures].
January 19th
And it was time for:
- An 8AM appointment for the 48 hour Covid Test for the Southern Caribbean Cruise with the Curative Group at the park around the corner from the house, who guarantee results in 2-3 hours. And 2 1/2 hours later - NEGATIVE.
- My 3 Month Follow-Up visit with Dr. Zikria for the official results of my PET Scan and Plan of Care for the future, if there is a need for one.
After the obligatory blood work, a VERY Excited Dr. "JZ", [which seems to be a perpetual state for her lately] comes in with the results and offers to have the Chemo port taken out if it is bothering me, or we can wait till next January marking the 2 years she promised for a final all clear. I'll wait, so she schedules a port flush downstairs in Debbie Musiker's Excellently run Infusion lab.
To be Honest, she had called me 1 hour after the scan results were posted on the 11th with the Good News... and yes.. she was EXCITED then too.
So we went in for another Celebratory HUG!!! <Notice the letters are HUGE... So was the Actual HUG!
Gawd, I just LOVE this lady!
CHUCKY NOTE:
For those keeping up with this journal, we'll pause here until after the Cruise and catch back up on the way to the February Endoscopy.
CHUCKY NOTE II:
The REAL DRAMA starts with the next Installment entitled:
also Found in the archives on the upper right of the Main dashboard.
Better grab another bottle of your favorite beverage,
The FREAKIN' SAGA continues...
And it Ain't Pretty.
