Ahhh yes the beat goes on, and it just keeps getting better - or not.
But then again that's just my warped view of it all.
Carry on, if you dare.
~ ~ ~ ~
Over the Holidays, friends Helmut and Lydia talk us into booking a Columbia River Cruise in April so I need Dr. Selman to make some decisions on my eating better and the TEP for my voice. He says more healing is necessary and schedules an observatory procedure in March or April.
“BUT Remember DOC, I gotta be able to at least eat more solids by April for the Cruise!”
'
We’ll see he says.
~ ~ ~ ~
Captains Log
January - March 2024
January
So… the trip to Santa Rosa Beach and Brian’s Surprise party was a whopping success and we got to see a lot of friends from Atlanta there and try a few good restaurants before heading home to see what awaits me.
February
A series of office visits are set this month to see Dr “JZ” for a follow up, Dr Block to check on the PEG Tube and some issues, Dr Gannon to see about reversing the jejunostomy in favor a gastrostomy to be able to eat better, the jejunum seems to be backing up a lot.
And lastly, a meeting with Dr Selman who finally schedules an evaluation for the TEP Procedure for March 21st. If all looks good we'll schedule a dilation of the neo-esophagus, a possibly a Stoma-Plasty to widen my Stoma and and insert the Speech Prosthetic.
March
And then in the mail comes a disturbing letter from American Queen Voyages, the cruise company for the Columbia River Cruise. They have gone Belly Up and declared Bankruptcy thus canceling the cruise.
Now we have to fight them and their Surety company for a refund.
But, at least we don't have to hurry the procedure and healing to be able to eat… or so I think.
And of course in the middle of all this the PEG tube pops out of my stomach stoma while I'm cleaning it and I cant deflate the internal retaining bulb enough to reinsert it. I haven't really been using it as I have been able to get several lighter foods down orally so I decide to wait 'till I see Selman and Gannon again to discuss if I really need it.
March 12
I decide to do a little yard work the day before that turned into a real chore and when I go in for my Hydration they notice that my left are is a bit swollen.
Hmmm, what happened there?
Later that night Illy notices that is now VERY swollen and I break out the Ace Bandage to see if a little compression will help. Nope.
2 days later it is even more swollen so the Internet Research Queen [a/k/a/ my wife] orders a compression sleeve from Amazon that winds up being too small.
The swelling keeps getting worse and a larger sleeve is ordered.
March 29
I finally break down and go into see my PCP who immediately orders blood work and an ultra-sound to try and figure out what's up.
The tests come back inconclusive so he orders lymphedema treatment.
After trying to schedule the rehab around the corner at Memorial Regional which doesn't have any spots until May, I finally get scheduled at Memorial West which means I have to slog 10 miles each way 3 times a week for a 45 minute Lymphedema treatment at the hands of the delightful team of PT therapists, Jordan and Jamie.
All this goes on until August 2nd where it looks like they were able get the lymphatic system drain better to solve the problem and the swelling has receded.
And of course, nobody can explain what caused it, but Hey, its back to normal so that's that!
During all this, in addition to some serious Physical Training exercises, I get some of the best massages for my stiff neck that is getting worse from all the previous radiation fibrosis setting in and the extreme cervical stenosis
~ ~ ~ ~
Captains Log
April-May-June
April 10
So here I am in Selman's OR hoping that we can get dilated and the TEP done on the first try.
Except... I have a significant infection in the Stoma and Dr Selman elects to not proceed with the possible TEP for fear of spreading the infection to other areas so that procedure is postponed till after a course of antibiotics. He proceeds to dilate the esophagus and notes the the jejunum is highly redundant in its structure which is probably what is causing the swallowing issues.
We'll reschedule the TEP once everything is healed.
Since the swallowing is becoming a real issue we decide to reinsert a feeding tube so Dr Gannon then steps in and inserts a Mic-Key low profile PEG tube in place of the previous tube what was becoming annoying before it popped out. The Mic-Key device allows me to disconnect the bolus feeding tube for more comfort and only insert it for feeding.
More of the same daily routine of trying to eat and stay positive but the swallowing is getting worse since the dilation.
A follow up visit to Selman's office and what do we find... the Antibiotics have caused a little Candida infection [oral thrush] in the jejunum and mouth so now we have to go through a course of Nystatin and Clotrimazole to cure that before anything else can be done.
Yeah, it just keeps getting better and better... NOT!
~ ~ ~ ~
Captains Log
July - October
July 24
With the Candida cured, were back in Dr Selman's OR for another try at the TEP but he finds difficulty with the jejunum not cooperating and he can't get a good visual of the right spot in the stoma from the jejunum and once again aborts the TEP. He does however dilate again noting the redundancy in the jejunum.
He is as distraught as I am and in recovery he has difficulty informing me of the failure to launch.
He suggests a second opinion with Dr Francisco Civantos who trained him at Sylvester Cancer In Miami. Perhaps he can find a way to effect the TEP and whatever without possible perforation of the esophagus.
August 16
I meet with Dr Civantos who proceeds to inspect the jejunum with a different laryngoscope and discovers the it does not connect to the stomach but goes straight to the intestines.
Hey Doc, I could have told you that.
He also notes the redundancy encountered by Dr Selman and after discussion they suspect the Jejunum has formed an S shape over time and is doing the thing intestines are meant to do which to palpitate to process the ingested food by oscillation of the filum, etc. and this may be what is impeding adequate swallowing while pushing everything back into my mouth.
He orders an esophagram to get a better look at what is happening when I swallow since he can't access the video of the more recent study done at Memorial.
He also refers me to surgical oncologist Dr Dido Franceschi for further evaluation after the esophagram to see if the jejunum can be straightened out through the abdomen so they don't have to open the throat again, risking another fistula.
Or if it would be necessary to remove the jejunum and do a gastric pull up instead using part of the stomach to create a neo-esophagus, similar to the Gastric Bypass used for weight reduction cases.
August 30
With the esophagram completed on the 28th, and a CD of the Study done at memorial in hand, I meet with Dr Franceschi to discuss what's next.
After comparing the two esophagrams he feels that a possible straightening of the Jejunum might work but the possibility of it re-developing the redundancy again is high. He also doesn't see it happening abdominally and that the gastric pull up may be better.
BUT... with my history of radiation frying the tissue in the area and the previous fistula, the risks are high.
He will confer with Dr Civantos and they will come up with a plan.
Sept 13
We meet again with Dr Civantos who agrees that straightening the jejunum may only be temporary and the multi-folds would probably return over time and he suggests another option.
We meet again with Dr Civantos who agrees that straightening the jejunum may only be temporary and the multi-folds would probably return over time and he suggests another option.
An endoscopy under general anesthesia, placing a stent in the Jenunum at the area of blockage, and attempting to inject the area with botox to allow for unrestricted flow.
If that doesn't work then he will consider doing the Gastric Pullup to replace the Jejunum.
The earliest he can schedule the Procedure is October 14th since he has a conference to attend in late September and other procedures scheduled in the early October.
His scheduling nurse Leticia calls to confirm the date and to also to put me on a waiting list should an earlier date open up.
All this while we are planning the trip to Santa Rosa Beach on October 20th for Brian's Wedding and of course there is concern that it may cause issues that would preclude my enjoyment, or even attending, the wedding.
Are we having fun yet?
The rest of the month is more of the same, including twice a week hydration since trying to get enough fluids in the tube without causing "Dumping Syndrome" isn't working.
September 30th
And now we have to make a trip to Sylvester for the requisite pre-procedure screening, the issuing of more Hibiclense Soap to scrub the night before and morning of the procedure, and an EKG.
This was not an easy deal.
We arrive a little early just to make sure all goes well and park in the west garage, only to have to trek the most circuitous route to get the the East entrance check in and wind up spending 3 hours being shuttled in and out of this office and that, first to get issued the Hibeclense with instructions, than out to the waiting room for another 45 minutes to be called in for 3 minutes of screening questions, then out to wait again, and once more into the EKG room that takes all of 5 minutes.
You would think they would be a little better organized but hey, they "Got Their Procedure".
October 3rd
We get a surprise and welcome call from Leticia at Sylvester, October 7th has opened up for surgery and we jump at it. Only to get a call back from her 30 minutes later that the first call was premature having only seeing the "possibility" of the opening in the system.
OK... so much for the Happy Dance I just did around the Kitchen.
BUT... the next day we get an early call from Sylvester Central Scheduling to advise us of the change of dates for the procedure to the 7th, followed by another call from Leticia re-confirming it all. She is So Happy to have helped, we're So Happy she did, Sooooo... another Happy Dance around the kitchen, living room, back patio etc.!
Hopefully the recovery and expected pain will subside in time for the trip to the wedding.
~ ~ ~ ~
Captains Log
The Moment of Truth
October 7th
After a 5AM wake up to Scrub and slog through rush hour traffic for a 7:30 arrival at the EAST entrance check in this time. We then sit in the waiting room for an 1 1/2 hours to be ushered into the prep area to get I.V.'s, B.P's and all sorts of stuff for a 10:30 procedure. Hey, I got nothing else to do.
Dr Civantos appears and goes over the procedure one last time to make sure we're all on the same page. He advises that he will not be doing the TEP since the stent and the Botox injection to de-nerve the area will only be temporary to see if it will train the Jejunum to behave and if not we might have to do the Gastric Pull up and the T.E.P. would cause an issue.
So... we'll try to fix the swallowing first and follow up with the T.E.P. after whichever procedure works.
1:00PM
Coming out of the fog I realize that I’m still in recovery waiting for someone to tell me what happened when my beautiful wife comes around the corner with her sparkling smile and proceeds to tell me that all went well. She met with Dr Civantos who advised that he had dilated me to 20mm and stitched in a 18mm Stent along with Botox injections in the area.
As the drugs wear off I’m beginning to feel all sorts of discomfort in the area of concern but am able to suck on some ice chips and sip a little cranberry juice.
Now the objective is to get me to pee before they will release me since the anesthesia tends to stop up everything. This could be a while as I can feel the urge, but ain’t nuthin’ coming thru!
Additionally my BP is running high but is slowly coming down so let’s concentrate on getting at least a dribble.
After an hour I am finally able to get a little fluid passing and we call for transport to get me to the car and home for some prescribed painkillers.
The next 24 hours is a marathon of pain and napping and it doesn’t let up marginally until Saturday.
In the meantime, I have a meeting on Tuesday with SLP Amanda for some training on the Emote Electrolarynx.
Unfortunately the pain was too much and we can’t get any manner of configurations using the electrolarynx including oral tubes so we suspend the session and reschedule for another time.
She will talk with Dr. Civantos and see what the next move should be.
OCTOBER 18-22
Brian and Terri's wedding was FABULOUS!
The trip to the panhandle was the usual tortuous 9 hours of tag team driving but the weekend was great seeing old friends from Atlanta and enjoying the festivities.
Unfortunately... a coughing fit after the wedding dinner caused the stent to break lose from the stitches and when I was able to push it back in, it began to migrate down the jejunum.
A call to Dr Civantos office netted an appointment on Thursday the 24th.
The trip back home included a stop in Sarasota at her Cousin Chelita's for a quick visit to see their new house and after a little soup at dinner I felt the stent move farther down to mid-chest and all the folds in the upper jejunum re-developed.
As a result, all swallowing ceased.
Oh Well... it was fun while it lasted.
OCTOBER 24-25
Thursday saw us in Dr Civantos office in Coral Gables at the U of M with him trying to scope the stent but cant get far enough down to see it and he schedules a procedure with the Gastro Team guru for Friday to go in and fish it out.
Soooo... he sends us to the ER at the U of M tower in Miami to
wait 2 hours to be admitted for the procedure.
We got to spend a wonderfully sleepless night in the hospital in Miami with my dear wife trying to sleep in a recliner.
Friday morning the Gastro team arrived, assessed the situation and after a 4 hour wait, wheeled me in for the fishing expedition.
It took less time [10 minutes] to fish out the stent than to get me sedated, and we were headed home by 6pm.
Now of course all the Botox had worn off and swallowing was not happening.
Dr Civantos will again consult with Dr Franceschi to see if straightening the Jejunum is a possibility or to go straight to the gastric pullup.
In the meantime, he will try a dilation and more Botox to see if that will keep the Jejunum open.
November 22
Today we spent 5 hours in the Sylvester Cancer offices of Dr Civantos ostensibly to get another dilation and Botox injection in my throat to hopefully improve swallowing.
If I could describe the term “Cluster Fuck” in a simple phrase it would be “Sylvester Cancer Center Head and Neck Surgery department.”
They most definitely DO NOT adhere to the principle of 6 P’s [Proper Preparation Prevents Piss Poor Performance]
Simply put, I had an 11am appointment. I finally got into the first exam room at 1:30pm to hold until they cleared the procedure room of the patient in there, only to be delayed because someone forgot to secure the dilators from the OR.
Sooooo… they take 2 other patients who came in way after us, one of which takes another hour plus with nurses going in and out and the Dr taking another patient while they wait for the lab report on the guy in the procedure room.
We finally get into the procedure room at 2:45pm only to have half the equipment fail to work properly. That took another 25 minutes of futzing around to fix it.
Once that was solved and we proceeded to insert the guide wire for the dilation they then discover they GOT THE WRONG DAMN DILATORS!
Sooo.. a race to the OR the get the right ones, all while one nurse is holding the guide wire sticking out of my mouth and the nurse with the right dilators returns and almost knocks her over and pulls the wire half out.
It is now 3:30pm and they have to numb my throat again. With the wire re-secured in my throat they get on with it.
An attempt to swallow a little water after the dilation ... and before the Botox nets nothing. So on to the Botox injection.
Fortunately I’m still numb from my ears to my pecs so they don’t have to numb my neck for the injections.
While he has the scope in there, he
spots a suspicious lesion or mass, maybe from when the stent dislodged and decides
that we need to take a biopsy in the OR to figure out what it is, so due to Thanksgiving being next week that is
being scheduled for 2 weeks out .
Bottom line it was 5 hours spent for naught.
Still can’t swallow and we’re back to square one. After evaluating the biopsy a meeting will be scheduled with the Dr Franceschi the oncological surgeon to discuss either straightening out the jejunum or going straight to a gastric pull-up with all its risks of cracking open my chest again, etc., including morbidity.
Seriously...
Ya just Can’t Make This S#!% Up!!!
~ ~ ~ ~
Captains Log
December
It is now 4 years [November 2020] since Dr Leon Maratchi [remember him?] reported the results of the biopsy that started all this Mishigas.
And well... aside from the operation of July 2023 to cut out the tumor, and costing me my voice, and the ensuing Chemo and Immuno/ therapy etc., etc., etc., we still have more issues to resolve including getting back to swallowing food and not just pumping Kate Farms Shakes through the PEG Tube, and of course the TEP, to restore my voice but first things first.
December 4
So here we are in the OR at Sylvester in Miami waiting for the gas passer (anesthesiologist) to send me to LA LA Land.
The plan this time is to take a biopsy of the suspicious looking mass in the neo-esophagus, and if it is nothing then dilate and inject Botox at the same time to see if that works to keep the tube open so I can swallow.
Long story short, no luck again, but at least the biopsy was negative.
So now we will have a Tele-Med on the 12th to discuss plan D, or is it E… maybe F! Crap... I have lost track and it is getting frustrating.
One of the suggestions was to take a section of skin from either my forearm or thigh to strengthen the neo-esophagus when they try to straighten out the folds, but I'm not to keen on carving up any more parts of my body and would rather get straight to the gastric pull up, risks and all.
We’ll see what Dr’s Civantos and Franceschi say and go from there.
DECEMBER 12
Time for the tele-med with Dr Civantos to discuss plan:
( )<- fill in the blank.
He is still keen on reopening my throat, pulling up the esophagus and cutting out the folds then doing a skin flap by taking skin from either my fore arm or thigh, then splitting my esophagus open and patching it with stronger tissue to keep it open.
After lengthy discussion and all the reasons why this is the best route, we will schedule meetings with Dr Franceschi to further discuss the straightening of the intestine folds and Dr. Jason Liebowitz who will do the skin flap from the arm of thigh, which ever has better blood flow. I neglected to tell him about the lymphedema I recently had in the left arm but will discuss that with Dr. Liebowitz.
Dr Franceschi will be on standby in the OR if the first option does not see to work and will attempt the Gastric pullup then.
Yeah... it just keeps getting better and better... NOT!!!
All the latest plans will have to happen after the holidays. I want to enjoy cooking for the Family on Christmas Day even if I can't eat.
The boys have been begging for my Sunday Gravy and pasta, and as any doting Grandparent, what the boys want... the boys GET.
DECEMBER
18
A scheduled
follow up with Dr Block, just because, results in no news other than he
questions the proposed options from Sylvester but understands I'm anxious to
get back to eating, and still cautions me about all the risks and if it’s really
worth it.
DECEMBER
19
And I'm
with Dr Selman for another scheduled follow up and he echoes the cautions of Dr
Block and is still against the options but since he referred me to Dr Civantos,
he defers to his judgement.
I Guess we’ll see after the holidays, I have a lot to think about and it isn’t getting any easier.
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