If you made it this far, you don't need another preface recap, so...
As the saga continues an inevitable point is reached, or has it...
N.T.D.I.P – Part IV -
Through the Fire!
Read on.
~ ~ ~ ~
Captains Log
July 24, 2023
As the fog clears I'm wondering why I feel like I’m tangled in a spider web and slowly realize that I have a dozen tubes, hoses and wires coming out of every spot on my body and a constant beeping is grating on my nerves.
Barely able to turn my head, I see the smili
. ng but concerned look of my Beautiful wife who is trying to say something but I'm having a hard time hearing as my ears are numb and ringing. Then I realize I'm numb all over, from my chest to my ears.
Finally I hear her saying that I am in the ICU and the operation went well.
Operation?!?... What the...
Oh yeah... THE OPERATION!
Guess I need to catch you up so lets go back to:
April 28, 2023
Dr. Block is waiting for me to log onto a TeleMed Call, and he's not smiling.
"So," he says, "the pathology came back from biopsy during the dilation and the tumor is definitely grown and becoming invasive. Also the dilations are becoming futile so it's time to consider a total esophagectomy to cut the tumor out. And as we discussed, it will also involve a total Laryngectomy removing your voice box and leave you with a permanent tracheostomy or stoma in your throat to breath.
I've scheduled an appointment with Dr. Yamil Selman in Head and Neck Oncological Surgery to discuss what's next"
Wait... WHAT?
I thought we were making progress, and now this!?!
He is adamant, I need to resign myself that everything we have done over the last year and a half, Radiation, Chemo/Immunotherapy, dilations, Etc. have been for naught and we need to move on to the next step, surgery if I want any chance of making my goal of seeing David and Jonathan graduate, and more.
MAY 1
An early meeting with Dr. Zikria and subsequent PET scan confirms the tumor has grown, the pathology is not good and she also agrees with Dr. Block that it’s time for me to consider the procedure.
This is followed that afternoon by the meeting with Dr. Yamil Selman, and the news goes from good to worse in a hurry.
The Good: after the procedure, I will never aspirate food or liquids into my lungs again and cease the constant hacking and coughing.
The Bad: I WILL lose my voice and breath from a hole in my neck, like all those people in the anti-smoking commercials you see on TV.
After lots of questions and a lengthy discussion, he wants to schedule the procedure ASAP.
"Whoa Doc... I need to process this. Give me a few weeks to wrap my head around it, I’ll get back to you."
We agree to circle back on June 1 to make a final decision.
I have an appointment with my SLP Neeta Singh Abrahiem for more swallow therapy that week and we also discuss my options.
She suggests that if I elect to have the procedure that I consider a possible T.E.P. [Tracheal-Esophageal-Puncture] to insert a speech prosthetic to help restore vocal ability. She also suggests that I make a call to the Sylvester Cancer Center in Miami for second opinion from Dr. Jason Liebowitz.
I agree... it couldn't hurt.
I had done a lot of research over the previous few months anticipating the inevitable, but not wanting to accept it quite yet. I discovered the ProVox Vega valve by ATOS Medical Group which would help me regain some vocal ability.
A call to a T.E.P. recipient who heads a local Laryngectomy support group gave me more info and confirmed that he had his procedure done at Sylvester and is using the ProVox Vega valve with great success for several years.
So there is some hope of avoiding the use of an Electrolarynx, of one of those Neck Buzzers you see in the anti smoking commercials that makes you sound like Robby The Robot.
MAY 19
The long trip to Miami and Dr. Liebowitz confirms all the above, but he sees little hope that I will be a candidate for a T.E.P. and a ProVox Vega, due the standard procedure of elevating a poprtion of the stomach after the esophagectomy to reconnect to my throat.
I asked about an alternate procedure that I had researched extensively, using some of the upper intestines to replace the esophagus and he balked at that idea stating it would require too many anastomosis [see link] and it could potentially fail and leak into my chest and abdomen causing sepsis and death. WTF?!?
He then launches into a quasi-sales pitch to have all the procedures done a Sylvester - to quote him: "A highly recognized Facility"- rather than my "Local Hospital" where they may not have the expertise.
I reminded him, that Dr. Selman had done his residency at Sylvester under him, Dr. Civantos, and Dr. Wood, the reigning Oncological Guru and he confirmed that Selman was quite impressive.
Once again I elected to think on it and left with more feeling of Doom and Gloom than confidence.
Besides, I Like My Team at my "Local Hospital". Dr. Block is considered one of the Best Thoracic Surgeons in the state and has been very good with me over the last year and half. And if Sylvester trained Dr. Selman... well that pretty much settled the team for me.
June 1
The meeting with Dr. Selman was filled with a lot more questions and he had all the answers. He felt it was 50/50 on the T.E.P. considering all the possible complications of the multiple body parts used to reconstruct the esophagus along with part of my pectoral muscle to rebuild the trachea.
If that was the direction I wanted, he will research it and schedule a meeting with Dr. Cristopher Gannon from Oncological Surgery to consult on the intestinal portion of the procedure.
Hmmm... the team just keeps growing. What the Hell, the more the merrier, it’ll be a party in O.R. SOMEWHERE!
June 17
The subsequent meeting with Dr. Gannon did not leave me with a warm a fuzzy as he also emphasized the complications and Selman repeated the 50/50 chance that the T.E.P. would not be possible.
After a more lengthy discussion involving my Wife jumping in with a lot of pertinent questions, I decided that 50/50 odds are better than nothing and besides, you can't hit a home run without swinging for the fences.
Selman chuckles and says,
"You can always strike out too."
Everyone in the rooms giggles, except me.
So I Counter with the quote from former hockey star Wane Gretzki [The Great One]:
"You also miss 100% of all the shots you DONT take!"
We leave it that we will proceed with the multiple procedures and they will coordinate all three Dr.'s schedules to get on with it, which turns out to be June 27th.
JUNE 23
I get a call from Selman's office that complications with all the Dr.'s schedules caused the surgery to be re-schedule to July 10.
Oh boy, another 2 weeks of increasingly difficult swallowing.
And when all seems to be going just fine, I think a clown car has just pulled up.
Seriously, in the middle of another
sleepless night, my phone dings with my latest blood work results - which were fine thank you very much - and for no particular reason I decide to check all the upcoming appointments to calibrate my calendar and what do I come across... another schedule change moving the surgery from July 10 to July 24th.
Wait... nobody called me about this!
W.T.F. Guys… let’s get it together over there!
It seems that after all the big time
“coordination” that the 3 surgical offices - which I'll label offices A, B & C to protect the innocent - claimed was necessary was all for naught, i.e. changing
from the Tuesday June 27 to Monday July 10th because while Dr. A and Dr. B could make it on Thursday the 27th, Dr. C only does surgery on Monday.
And while I'm sure he has lots of “Other” stuff he could be doing those other days,
ya think he might have bent just this one time.
After confirming that all 3 Dr.’s agreed on the 10th and I agreed that I was good
with that date, unbeknownst to his surgical coordinator, Dr. A. decides on a 2
week vacation starting on June 30th so of course on Friday June 23rd they apparently had to
scramble to find another date they could all
agree on, July 24th, which is, but of course… a bloody Monday!
Now then, Dr. A's office must have assumed that Dr. B's office called me about the change. Dr. B's office assumed that Dr.'s A or C's team were making the calls, while Dr. C's office must have stepped out for a beer, or something like that, and missed the rescheduling party altogether.
All this while the already frustrated
and paranoid patient, “MOI”, with a severe swallowing issue - Dr. Block wouldn’t do another esophageal dilation in May to relieve the issue because it was too close to the first surgery date of the 10th - was having serious trouble consuming enough
nourishment to keep his weight and strength up for a July 10 bout in “O.R. St.
Elsewhere”, and who is now been advised that we have to wait another 2 weeks while Dr. A is
sipping Frosty Fruity Umbrella drinks on a beach in Maui, or wherever.
Which brings us back to:
July 24, 2023
So now its 5:30AM and we’re headed to the hospital for “the procedure“ - if you can call a planned 10+ hour operation with an army of medical types just “a procedure”.
Our son Brian and his girlfriend Terri had flown in from Atlanta the previous week to support us and he meets up with us at the hospital until he had to run home for a business conference call. Additionally, unbeknownst to me - I was already in LaLa land - Randi Brahm, a good friend of Illy’s from her days at BAPCO had driven down from Boca Raton to be with Illy as she waited in the cafeteria trying to not drink all the stale coffee to calm her nerves. God Bless Great Friends!
I later found out that it was in fact a 12+ hour operation to cut the tumor out - removing my esophagus in the process - as well as my larynx due to the tumors proximity to my voice box, and rebuilt it all with various other body parts including part of my small intestines for my new esophagus and my right pectoral muscle for my new trachea and tracheostomy.
I had 3 surgeons, 5 residents, 2 Anesthesiologists, 4 nurses [and a partridge in a pear tree] in a "standing room only” O.R. I'm told that it was quite a production and since it was a very unique procedure it was, after all, a great teaching moment for the residents and lots of training videos.
And then there was another 2+ hour re-do 2 weeks later to fix a leak caused by a Fistula between my throat just behind my tongue to the outside of my neck that was held together with a row of staples. My new Halloween “Frankenstein” look.
JULY25th
So here I lay in ICU in a spaghetti tangle of hoses, wires tubes and bed sheets while nurses and half the hospital parade in and out every hour, 
prick my finger for a glucose count, take blood samples, change the liquid food bag attached to the J tube connected directly to my intestines, administer meds in the G tube attached directly to my stomach, all while the blood pressure cuff goes off every 30 minutes and some unseen machine is constantly beeping.
Oh Joy!
The rest of the week was much of the same with the parade in and out, beeping, blood work etc. until:
JULY 31st
I am finally moved from ICU to a room on 6 Central, a rehab floor which was very crowded and I get a roommate named Horace, a cool guy with a heart problem and his lovely wife who were more that gracious to us.
Then due to a Urinary Tract infection caused by the Foley catheter, they decided to move me to a private room 621 which was closer to the nurses station and tried to get me there in the bed.
That's when an argument starts amongst the transport team that It is a special bed and wouldn't fit to get it out of the room.
What? How the hell did they get it in then?
My Gypsy respiratory therapist said "he can walk" (meaning she saw me exercise walking with Marlon the PT therapist). And since they were all expecting the same type bed TO BE in the new room we headed out dragging my tangle of tubes,bags and machines, etc. along the way.
The walk wasn't bad, but when we got to the new room they found that the bed there wasn't the same so we had to wait for them to bring the bed from 604 (gee, They found a way to get it out) and that's when even more chaos began.
They had no idea how to rearrange the room to accommodate the larger bed, my various machines with now only 5,000 wires and cables, the recliner chair. etc., so I had to take charge and get it organized. Quite the process since I cant talk and have to give all instruction via my writing board.
Here's a little of how some of the rest of the week went...
Let the Drama Begin!
MONDAY
Was quite an adventure.
I decided to try sleeping on my left side and poked the neck incisions with the O-2 collar making blood ooze all over my own TempurePedic cervical pillow from home that was way more comfortable to sleep on because of the severe stenosis in my neck.
At same time one of the 2 dozen sensors disconnected and showed I was in V-tack. This caused the attending doctor to order blood work & an E K
G.
And this was at 1:00AM, just when I decided to get up to pee.
Charmaine, who is and absolute trreasure, rushed in while I was peeing, saw the mess and started to change the bed clothes, my gown and clean me up.
I sent her off for some Peroxide to clean up the blood that had seeped into the pillow and working together we got pillow cleaned, sheets changed and a new gown on me.
Then we got all wires re-hooked up with O-2 collar re-pined and me back in bed for a shaky E K G because I was still cold and shivering from the clean up laying there uncovered.
All this by 1:45am.
it took me 20 minutes to one finger type this while flat on
my back. And then it was
time for my hourly blood pressure which of course showed a bit high from all the excitement.
But nobody came rushing in so I'm gonna try getting back
to sleep.
Now wasn’t that exciting?
TUESDAY
2:00AM
And I'm getting the first good sleep in a week and of course... an alarm on the damn meds pump goes off and I push the call button.
Nothing, so 5 minutes later I punch it again, still nothing.
The third time finally summons a P.C.A who storms in and all but screams:
"I'm not your nurse ".
And leaves having done nothing to stop the beeping.
so, another call button click.
Still no nurse but another P. C. A. finally comes and turns off alarm and flushes the med line that was causing all the ruckus.
Finally, my night nurse ALICIA, who I found out later was a "floater" not a regular 6 Central team member, came in at 2:30 and with her perpetual frown says,
"I'm at lunch, I'm here now what do you need"?
I asked, via my writing tablet, who was covering for her while she was at lunch?
She said curtly, "another nurse", who must have gone out for a beer because nobody answered the call but a P.C.A.
Alicia was annoyed that the call interrupted her lunch and just stood there with negative body language as if to say it was my fault the alarm went off.
It was her responsibility to have a more responsible nurse to cover her when she was "at lunch".
This girl is a TOTAL FLAKE. Seriously, she seems to just be "hanging out" here till she can retire, or something and gets upset that someone would like her to " DO HER JOB".
5:30AM
I wake up to pee and can't reach urinal. When I did, I see that I had messed the bed.
I push the call button and Alicia answers on the intercom that she's on the way.
10 minutes later she shows up and I ask to get up to get cleaned.
She says she has to call someone to bring stuff to get me up.
What Stuff?!?
This girl is always with the: "I Gotta wait for this…
Or, “I Gotta go do that", before something else can be done.
All the while, all I want to do is to stand up from a crappy bed - All puns intended!
She "doesn't have this, Gotta do that."
All I want RIGHT NOW IS TO GET OUTTA THE DAMN BED... NOW!
Finally a P. C. A. comes in and we start to clean up and now I REALLY need to poop and SCRAMBLE TO get to the commode, this gives them time to "do their stuff."
THURSDAY
And the joy of nightly drama at Memorial Regional 6 central continues.
This time mix of this and that.
First, from 11pm off and on, I felt like the elephant that was sitting on my chest was trying to push me through the bed.
By 2am the Elephant is doing the CHA CHA on my chest so I call for a nurse to do the E.K.G. TANGO instead.
3 P.C.A's checking 2000 wires can't seem to make the machine read past "tremor".
Sweet Nurse Molly asks to cut in but can't seem to get the rhythm either.
Maybe they all need more dance lessons.
I call an audible for pain meds and Molly heads to pharmacy while I kick the elephant and all the other dancers off my chest and get out of bed so I can finish my daily feeding.
Molly gets back with my drugs and while I'm setting up my dinner kitchen on the rolling bed table, She pumps the oxycodone into the J Tube and I chow down on a Kate Farms [not so finest] Peptide Shake then clean up my little kitchen while Molly heads out to draw blood down the hall.
I finally settle into the chair to document the nights fun just as the dope starts to kick in so I decide its time to take a little nap but can't get all the lights off.
Rather than clicking the call button and waiting for someone to show up to turn out the lights, I uncouple from my umbilical cords, find all the switches and reconnect the now only 2,000 wires, the B.P. cuff - and a partridge in a a pear tree, [there's that bird again] - and go to sleep in the chair.
Just then, the respiratory dude shows up to suction the mucus clots and change the Larry tube collar ties.
The suction process tickles my trachea and causes me to cough snot across the room.
I wave off the the collar change, I just wanna nap!
Molly's back to do the vampire thing and the respiratory dude comes back with my morning ration of ice cups and splits just as Molly finally finds the leg cuff machine to help reduce some swelling in my legs, which is really not a good thing to do now that I'm in the middle of everything else and sitting in the chair.
I'll decide to just try to nap off and on all day, which didn't go as well as I wanted, but hey... ya gotta try.
7AM
Well that didn't work. My Butt started to hurt and decided bed may be a better idea.
Stopped to poop along the way.
I finally get into bed and drop the call clicker and am too tired to find it.
7AM
Also signals the nurse change which brings on the great day team, Doris & Sabia are back, YAY!
Fortunately Sabia drops by to see if I'm the HOT MESS everyone says I am - that's "In house speak" for temperature check - and retrieves the clicker for me.
When I ask about breakfast she says she'll "head out for donuts" - for her that is - with sprinkles of course. I still can't eat anything so it's another of Kate Farms shake down the tube for me.
Meanwhile I'll still try for a nap .
Yeah, ya just can't make this $#!t up!
9:30 AM
Dr. Selman comes by with his resident in tow and tells me that because the fistula is not healing fast enough I gotta wait 10 more days before he'll let me do any swallowing so I have to use the PEG tube to feed.
And of course now with all the diarrhea, I need to get a poop test for bacterial infection. If all is OK I will start real feeding through the G tube without them hanging a bag for the J Tube.
YAY!!!!
~ ~ ~ ~
Captains Log
August 1-8
The week that followed was pretty much of the same thing of beeping, Blood Work, Snot Sucking, Physical Therapy Walks around the floor with Marlon, Doctors visits and a few visitors stopping by to check me out.
My wonderful Daughter-in-Law Cristina is a regular, and since she used to work this floor everyone stops by to say hi. And of course the connection gets me extra attention from everyone.
Brian is in and out and Greg finally brings the Grandsons over who get to see the SLP do the suction routine and when the suctioning makes me cough they cringe in the corner at the sight of snot flying across the room. Eeewwww!
Our dear friends Helmut and Lydia stop by mid-week and she has a pair of cool grey shorts for me that are labeled:
"Just Another Sexy Assed Bald Guy"
which is so appropriate that when we got home, Illy bought me another pair in Black. I wear them everywhere now and get lots of giggles.
August 8
And I'm finally cleared to go home and not a moment too soon for me.
It is a process unhooking me from all the wires and tubes and collecting all my STUFF for the trip home.
Brian helps load me and all the take home stuff prescribed by the Dr.'s into the car and we're off to my own bed.
YAY!
~ ~ ~ ~
Captains Log
August - October
Now starts the real rehabilitation. I'm still very weak and have to shuffle around and catch my breath all the time.
Physical and Occupational therapy has been scheduled and I start to get visits twice a week from therapists that exercise my upper and lower muscles as well as soothing massages.A home care nurse is also scheduled to check my vitals weekly but she is such a flake, showing up late or not at all that we called and canceled her with the agency.
Before I left the hospital, the SLP had ordered a suction machine that I now use in place of the suction done by the respiratory therapist while I was in the hospital. It is a bit of a chore and I have to irrigate with saline to help loosen the mucus plugs and keep my airway clear.
Frequent visits are made to Dr. Selman's office to scope out and clear the mucus plugs in the trachea that I can’t seem to get with the machine and he instructs me how to be more efficient with it with instructions to irrigate and suction often to help the trachea heal properly and keep the airway clear.
The SLP also sent me home with a kit from ATOS Medical with all sorts of accessories to help with the Stoma.
Most important is the Lary Tube 
that keeps the stoma from closing and allows proper airflow along with a variety of H.M.E.'s [Heat, Moisture, Exchange], little filters that attach to the Lary tube to replicate the function that my nose used to perform of keeping the air to my lungs moist which keeps the mucus from thickening.
Also included are Adhesive attachments
to use the HME's without the Lary Tube, or with a special Lary tube with a ring to attach to the adhesive.
Adhesive Remover Pads to help remove the adhesive attachments, Skin Prep pads to protect your skin before attaching the adhesives,
The kit also came with a Electrolarynx to simulate vocal chord vibrations but unfortunately, because of the numbness caused by cutting all the nerves in my neck and throat due the relocation of my right pectoral muscle to my throat and the excessive swelling, it doesn't work so well. It does have a tube attachment to stick in the mouth but it doesn't work either.
My only hope is that I can get a T.E.P. [Tracheal Esophageal Puncture] soon and a prosthetic such as a Provox Vega, an ActiValve or XtraSeal
This wont happen until the fistula heals and I get evaluated by an SLP for its feasibility.
Fingers crossed chanting a Tibetan Good Fortune Mantra... Ooooommmmmmm!
The feeding tube is a pain and the EnFit connection got stuck and cracked and I had to go online and buy a universal connection and rig it so I can feed shakes for nutrition as Selman won't let me swallow anything until the Fistula heals.
This means having to ingest Kate Farms protein shakes every 2-3 hours and because the Roux en Y procedure resulted in what emulates a Gastric Bypass, I have to take it in small doses to avoid dumping syndrome that results in diarrhea.
And of course since I am easily distracted and don’t keep track of time lately I have to set alarms on my phone to remind me to eat.
I’m still very numb from the top of my ears to my diaphragm from the Pectoral muscle relocation and I can barely lift my left arm over my head. This is where the physical therapy is supposed to help but it is a slow process.
The authorization for therapy ran out after 6 weeks and I'm on my own to do exercises, which again, with distractions and whatever, that doesn't get done as regularly as it should so, Illy decides we have to start walking around the block to get some sort of exercise and movement and at first I can barely make it to the corner.
Visits every 6 weeks to the Chemo Lab are scheduled to flush my port to keep it from clogging along with hydration.
Week of
September 24, 2023
Since the carcinoma was analyzed by "CARIS Life Science" labs back in 2020 as "Programmed Death Ligand 1" or PD-L1 (22c3) it made me a perfect candidate for Immunotherapy, which breaks down the barrier in the tumor allowing my own immune system to attack and kill the cancer cells. So we start with 480 mg of Opdivo (nivolumab) every 4 weeks.
All this while Nurse Illy is still packing the fistula 3 times a day. Let's hope it heals soon so I can get to eating.
~ ~ ~ ~
Captains Log
October - December
Wellll now, THAT didn’t last long!
Wait... What!?!
What didn't last long?
Well, we were supposed to be going after any residual cancer cellals with the Immunotherapy. We even got a dose a month in September and October and then combined the Opdivo with another big gun, Yervoy to up the attack.
And then everything came to a crashing halt!
AND, why did it stop?
Wellllll, blood tests every 2 weeks showed elevations in my liver enzymes and by the end of November, we get the report that my AST, ALT and Alkaline Phosphatase were not just elevated, they were OFF THE CHART! Apparently all that high powered Immunotherapy WAS DAMAGING MY LIVER!!!
W.T.F!?!?
So. now we have a new plan: hold off the Immuno for awhile to see if the numbers come down.
Or, to quote the late Great Gilda Radner's character on Saturday Night Live, Roeanne Roseanadana:
"It's Always Something!"
At least the latest PET scan comes back NEGATIVE [YAY] and we move on.
Dr. “JZ” Says, “We'll see what shakes out in the coming months before we consider anymore immuno”.
Fine by me as Illy and I prepare for a trip to Santa Rosa Beach in January for son Brian’s Surprise 50th Birthday Partaaaay, which being the Stubborn Little Sicilian Man, I have volunteered to cater in spite of Illy’s apprehension of the strain it might cause on my healing. As if I would let anyone else do it!
But just for practice, and to see if I still have “IT”, I decide to throw a Holiday Party - what the hell it’s Party season - for the neighborhood and prepare a variety of Charcuterrie platters, Shrimp Bowl, Meatballs, Wings, Dips and a Ham slider board, etc. Just a little sumthin-sumpthin for 30 or so unsuspecting souls. It all worked out just dandy and gave me a blueprint for Brian’s party.
And all that packing in my neck that “Home Nurse Illy” has been doing seems to be working as the fistula has shrunken dramatically and hopefully by the end of the month it will be heald enough that I might even be able to eat and drink at the party.
As the year comes to an end it is evident that this saga has a bit more to go.
Soooo... we'll cover that in the next episode, hopefully the last, or will it be?
To find out you'll just have to trip on over to:
Or if on your computer hit the link on the right.
It just keeps on... Keeping on!
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