Ok, here’s the scoop.  On 10/24/17 I get to see my E.N.T. specialist about my recent procedure.  I take solace in the fact that Dr. Sataloff didn’t call me.  Last time, when it was cancer, he called the next day to outline the fact that it was cancer and what our next steps were.  This time, I’ve heard nothing.  I’m hoping that means it’s better news.  I know I might be allowed to speak after 10/24 but it’ll be limited.  I can probably speak for 1 minute in 10.

I’ve had this damn cough.  Betty did a 10 mile trail run in Lancaster and brought home her second cold this summer.  I missed the first one.  I was hoping that I  might duplicate that.  But the second one I caught just at the wrong time.  I will have to ask Sataloff because coughing is forbidden.  Speaking, clearing throat, whispering and coughing are verboten.  It undoes everything the doctor tries to do.  I feel snake bit.  So I’ll find out if I’ve done damage.  Last time he told me I had.  Same deal.  Betty brought home a flipping cold and I got it.

So that where we stood.  Tuesday was  the magic day.!

My guess about the lack of a phone call being good news proved to be accurate.  When I got together with the gang a Dr. Sataloff’s office (there’s always a crowd that includes nurses, doctors, fellows and people who are learning from the master.) I learned there was indeed good news.  First a bit of a digression.

When a growth appears on vocal folds the approach is a biopsy.  My first one was in 2010.  The biopsy came back In-Situ Carcinoma.  That’s better than invasive — that’s the stuff that spreads through your system and puts cancer in other places beyond the place that was first identified.  That didn’t happen.  Once again, in August again we identified an In-Situ Carcinoma and again no serious evidence of invasive tendencies, although I’m still on watch for safety sake in some instances.  Well, each of the other times in my other 9 procedures they detected dysplasia.  Dysplasia is pre-cancerous cell formations.  They are graded.  The scale goes from mild to moderate to severe or high-grade dysplasia.  Each of the other times, I’d shown some evidence of some form of dysplasia, with the exception of 10/16/17.  No dysplasia.  Nothing!  They biopsied all over the place.  NOTHING!

I’m celebrating!  Betty is taking me out to dinner tonight.  (She has some coupons to cash.)  We’re going to celebrate.  I’m celebrating the power of prayer and good wishes of my incredible group of friends.  They are concentrated on social media, like Twitter, Instagram and Facebook but not limited to those avenues.  The outpouring is nothing short of amazing and I’m overwhelmed.  Now, I can’t say I’m speechless, although I am.  But that would be cheating.  I am speechless because I can’t speak.  I’m being weaned back to speech at the rate of one minute in ten.  Not that you can hear me yet.  But that will come with time.  I’m going to continue behaving as my doctors and speech pathologist suggest.  But nothing changes how grateful I am to all my many friends and their concern.  It makes me feel totally blessed.

Well, the 11/28/17 visit is over. The news isn’t good. As I suspected, two back-to-back upper respiratory infections did some damage due to persistent coughing. Dr. Sataloff has put me on another course of antibiotics and prednisone. I’m to go back next Thursday for a procedure in the office. So, my hope to get off the mi shebeirach list is dashed. I continue to offer prayers and ask you to join me. I have to do it silently, since I’m back on total vocal rest. I’m grateful that Facebook allows me a way to speak to my friends who have kept me in their hearts and prayers.

So, they through me a curve. I was planning to see Dr. Sataloff on Delaware Day — December 7th — but the office called and rescheduled. So the new day is 12/12. I’m still duct taped until then and it won’t stop on that day. They’ve scheduled me for in in-the-office procedure to clean up stuff. After that, I’ll be on renewed total vocal rest. We’ll see what the word is after that. Thank you again for the prayers and loving concern. You’re the reason people claim my attitude is so positive. How could it be any other way with such support.

The visit to Dr. Sataloff on 12/12/17 went well. It is sure much easier to have an office procedure than check in to Hahnemann Hospital at 6:00 A.M., do a wait of indeterminate length (depending on the degree of difficulty of my procedure — the tough ones goes last. I’ve been that guy once.). Then, after the procedure is over and the anesthesia wears off, Betty Olmstead drives me home. Shoots one-half a day and I’m groggy for the half that’s left. Today, the doctor was very encouraging. He said the nodules peeled off without breaking the epithelial of the vocal folds. Things also went much quicker. Betty got to watch the whole thing so she has some stories to share. I’m also only on one day of total vocal rest. I’m going to sound again like a broken record. If things turn out as they indicated to me, i’m gong to have to blame the power of prayer, positive wishes, guardian angels and friends who show how much they care. I was frightened at the way things looked at my last exam. But something good intervened. I think it was all of you. To you and God I offer my sincere thanks.

And the saga continues….

It was quite a while between visits.  My nest follow-up was Valentine’s Day 2018.  I hope I hear the words I’d been hoping for this entire excursion.

“Van,” said Dr. Sataloff, “I think it’s time to take the bull by the horns.  We will initially try by going to you vocal folds via your mouth.  The other option is to do an incision in your neck and access your voice box that way.  But will try though the mouth first.  We’ll remove the base of the  scare tissue and get that biopsied to know where we stand.  Then I’ll take mucosa from your cheeks and graft it on to your vocal folds.  We intend to over do it.  We’ll graft too much at first, knowing that will fix itself whereas to graft not enough would be a problem.  Now, you’ll have fine sutures that will be very delicate.  Don’t cough, speak or clear your throat as it may damage what we’ve done. ”

So the duct tape comes out again.  But, with the grace of God, in the week or two after my procedure, when I resume speech, my voice will be strong and Cookie Monster and Andy Devine will leave me.

Prayers and good wishes have been my ally so far, I’m hoping they continue.

Ok, here we go with the next installment.  What an ordeal. I stopped eating on 2/25/18 at about 8:00 P.M., in preparation for my visit to Dr. Sataloff and Drexel Medicine E.N.T. at Hahnemann Hospital.  Showed up like a good boy at 6:00 for a procedure that was to take, oh — about an hour and a half as an outpatient.  Betty made the trek with me to AT&T Station at Broad and Pattison for the Park and Ride and an Orange Line trip to Race/Vine.  It’s the exact block on Broad Street where Hahnemann is located and we showed up at exactly the appointed 6:00 A.M. hour.  That was the end of nominal.  Now we start on the ordeal.  The 1 1/2 hour procedure stretched to five hours as some complications ensued on the resection.  Yes, we removed scar tissue first and then the plan was for some skin grafting to give me a vocal fold edge, but when Dr. Sataloff tried to attach new tissue to the old, the old collapsed and the fun began.  I quit smoking when my first son was born.  I wish I knew what my youthful cigarette experience would cost me some 60 years later.  But Dr. S persevered  and beat me up in the process.  My tongue got clobbered.  I came off the anesthesia and was scooted off the ICU for the night.  Oh, don’t be concerned, Van.  The floor you were on didn’t have working Pulse-Ox, that little red light on your finger stating the fact that the quality of Oxygen in your blood stream was sufficient.  Ok, I’ll buy that — maybe.  Seems a bit extreme but I was beaten up.  Keeping an eye on me was sort of important.  My entire neck was swollen, almost to the size of my head.  My tongue was HUGE and set on an angle.  It was swollen about 6X. I was using suction to make it possible to clear my passages to be able to breathe.  And remember that dinner.   Good, because Sunday night was the last solid food until Thursday when the finally released me.  Out-patient surgery, you say? Nuh-uh!  Now, I has some very positive experiences working with some wonderful, competent, caring and thorough RNs.  Saw lots of them.  They moved me from floor to floor, 18 to 8 (ICU) and then to four for the balance of my stay.  Michele set me up on four and was the absolute height of efficiency as she positioned all the doo-dads they were using to monitor me in such a way that my body position required.  I couldn’t lie down.  The good in my throat gaged me.  Remember that tong? It was now obstructive.  If I went to sleep, my tongue flopped back in my throat and woke me up.  So, now we’re without sleep for a few days.  Let’s see, dextrose and saline IV to give me some nourishment, suction to make it possibly to do some breathing and wires everywhere.  What a picture.  With Karen’s help — lovely ICU nurse who worked with me initially, I did give it a try to use a bed but that was a total non-starter, so we went to a chair.  And I didn’t get to lie down until I got home on Thursday afternoon.  Oh, My God,  what a mess.  So many wires.  Move and one of them get’s unattached.  That’s why Michele’s attention to placement was so critical and she was brilliant at it. She then passed me to Nicole when Michele’s 7A.M. to 7 P.M shift ended.  Nicole was outstanding as well.  Nothing was done without notice and explanation as to the whys and wherefores.  That is with the exception of the compression boots I found stimulating my feet and legs electronically one time when I woke up.  (Yes, I actually got a wink or two, a couple of times during my stay. )

Each time the shift changed, so did the information on the wall over my bed.  It always listed the mm/dd/yyyy but the variables were my goals.  Priority started with pain control.  They did too good a job of that.  In the past, when it was truly outpatient, I would seize the control of that stuff and eliminate it as soon as I could.  Everything I ingested came through IV so that meant, BINGO — time for drugs — dosage.  Done. I was hoped up for four days.  Pain was controlled so that objective was achieved.  The next major goal was to swallow.  That was the signal that I could go home.  If I could swallow my meds myself, and even more importantly, swallow some nourishment, I would render the IV superfluous.  Swallowing with the big tongue was a trick and I couldn’t do it.  I couldn’t swallow the saliva in my mouth for days.  All this time, I had no idea as to the shape of my tongue.  I didn’t find it out until I went home and looked for myself.  I had clues as I moved the suction instrument around my mouth.

Every morning there was a parade through my room as the ENT staff would wander through and ask me questions about progress and goals.  It was usually Dr. Panossian who led the parade and he’d usual close the, “The Boss will be coming through pretty soon.”  Dr. P would bring along a nasal scope to review the surgical results,  They only did that the first day after the surgery to investigate the aftermath.  But, each day I would be treated to the squad of residents and fellows gleaning progress details and learning of my case.  Teaching hospitals are so much fun.  Especially, when the head of your teaching hospital’s Otolarynology department is the best in the world.

I got a self-diagnosed scare that gave me some grief.  During the re-sectioning, they transplanted some of my own tissue to the base of my vocal folds.  I mentioned the suction device?  It’s called the Yankauer with bulb tip.  I would vacuum up the excess fluid in my throat, along with stuff that was oozing and keeping me from sleeping.  The tube was transparent.  You could see the gook it was removing.  At one point, I was getting these tiny pink circles.  I’m thinking, “Oh, no!  I am vacuuming up the resectioning.  I saved one of those Yankauer tubes — easy to do because I kept dropping them and one of my nurses would dispatch herself to get me another.  I checked with Dr. Sataloff.  “Don’t work about it.  I looked at it.  And it looked great to me.  Just don’t undo it by talking, coughing, clearing your throat or anything else you might be temped to do.”

My last best nurse experience came after Nicole met my doctor parade and reported that I could swallow during the night.  They got all excited but LJ. (the last of the best nurses) wasn’t convinced.  She was afraid they’d send me home and I would have to return so she monitored my ingestion of Ensure Enlive — what an insult to an HFLC diet person.  It was 50 grams of carbs.  That lasts me two days, in normal time as I attempt to keep carbohydrate consumption to 20 grams a day.  But I got it down and L.J was somewhat mollified.

I wanted the heart monitor, the blood pressure monitor, the pulse ox and everything else gone.  L.J. didn’t deem it safe.  She won.  Eventually, at about 1:30 on Thursday afternoon, March 1, 2018 they turned me loose.  I went with a prescription for 1.  Tylenol #3; 2.  Prednisone,  3.  Cefalexin; 4.  Suction,

It time for a digression on the suction.  Dr. Panossian, a fine young doctor doing a fellowship with Dr. Sataloff, feels like a friend.  Each morn. ing, what a termed the Doctor Parade went through.  It was like rounds on TV but I don’t recal that happening between 7:00 A.M. and 8:00 A.M.  Three or four would make their way through my room, asked my white board how I’m doing, asked if my tongue throat swelling had subsided any.  On the day following surgery, Dr. Panossian brought a scope with the hope of inspecting the work.  At each visit the phrase would be trotted out, “The Boss will be here in a few minutes.”  Only once in my four days as an impatient did he not drop by for an evaluation and progress check.  Wednesday evening, I was determined to swallow something.  I knew that’s what I needed to do to escape, so I practiced.  Nurse Nicol was cheering for me when I wrote it on my whiteboard.  And I was loaded for bear when the Doctor Parade came through on Thursday morning.  I mentioned the suction and Dr. Panossian was quick to write me up a prescription.  In the healing process, there is lots of effluent distributed and I can gag one.  The shift changes at 7:00 and L.J wasn’t buying my homeward bound song.  She wanted proof.  So I did my best and the lovely lady who orders medical equipment for patients being discharged was very kind.  “You’re in Delaware and I’m looking for a Medical Supply house to provide the suction.”  I gave her Manor Pharmacy in Wilmington Manor — not only niece people but they’ll either provide the device or a referral.  That’s what happened here.  Manor Pharmacy referred to American Home Patient and the nice lady at Hahneman, who kept me in the loop the entire time, told me they’d deliver Thursday afternoon.  Maybe there’s a language barrier between Newark DE and Philadelphia.  Betty was concerned and called American Home Patient.  How they drew the inference that I wasn’t coming home until Monday is lost on me.  Fortunately, a very nice guy was contacted and he showed up Friday evening.  But they gave Hahnemann a bad name that I can testify was totally un-deserved.  I got my suction.  I still rely on it.  Its made by DeVilbiss and it’s not only 120 volt and cigar lighter powered, it’s battery back up.  So I toted it to the appointment this morning. It made people curious about the noise of the on the subway.

March 6th, 2018.  Follow-up appointment with Dr. Sataloff and the Otolaryngology team.

Got to AT&T station a bit before seven.  It’s usually a seventeen minute train jaunt down the Orange Line toward Center City.  Today was no different, but I was.  The procedure was on 2/26 and I still hurt.  I got rid of one of the extra tongues in my mouth but the two that are left are distended. One side lays flat while the other displays something reminiscent of Serpent Mound.  I’m attempting to work around my inability to chew (did you know how important a tongue is to that process?) Yesterday, in a freaky moment of devil-may-care bravery, I tried to chew a cracker with some creamy peanut butter on it.  That was a joke.  I would up wiping the thing out of my mouth and donating the half I hadn’t tried to eat to the dog.

I have learned a technique for getting down my pills.  Gotta start the day with Prednisone — multi tabs.  I push them up the length of my tongue as far as they will go and then put a straw in the place where they went over the horizon.   It’s not perfect.  Sometimes one of the suckers gets away and I have to repeat the trick.  Eventually, they all disappear.

The straw trick has afforded me all the nutrition I’ve ingested for the past week.  During my stay at Hahnemann, they gave me dextrose and saline, since I couldn’t swallow.  They wouldn’t let me leave until I could swallow something, as I mentioned, I scored a swallow on Wednesday night.  I would have been so totally destroyed if I had to stay another day in hospital.  I’m already on record with my love for the nurses who cared for me.  They were wonderful, each in their own special way.  But the stay in the hospital was debilitating.  And I got no sleep. Every time I started to nod off, my tongue rolled up in the back of my throat.  Second, I dropped 18 pounds from the admission to today.  I was in a cotton picking chair the whole time.  That made my feet and ankles swell.  Sitting up all the time will do that.  I got no exercise, save for the first day in ICU when the PT folk took me for a walk.  That didn’t help very much.  And I had a room-mate who was captivated by the Game Show Channel.  I’d attempting sleep and “Our Survey Said,” would wind its way through psyche.  I got to that fourth floor room at two P.M. and Game Show Channel was on until eleven.  Were I to pull another like him and I think it would kill me.  Betty was concerned that ENT folk were too eager to release me.  I understand her evidence but most of it derived from leaping to conclusions.  And, since I can’t speak, I can’t dissuade her worries.  So we have one of our very rare arguments.

Lastly, an update is due.  Dr. Sataloff is very positive as to the end result of Monday’s procedure.  He said the biopsy showed no cancer in the margins, perhaps a bit of dysplasia but it was all removed in the five-hour operation that was supposed to be 1 1/2 hours.  He was using words like “longest” and “most difficult,” to describe what had happened.  He also asked if I could stand something else he almost never did: could I be on total vocal rest for 3 weeks.  I said, yes.  So my next appointment is the first day of spring, March 21, 2018 at 7:30.  By then, I’m hoping I’ll be able to swallow, eat and breath without gagging.  I also hope my tongue is normal in size and it doesn’t fight with my ability to chew.

Today was to have been the day.  But the Weather Channel, who has started to name winter storms just last year, stuck the name Winter Storm Toby on a nor’easter that took aim on the Middle Atlantic States.  Since Philadelphia was expecting about 12 inches of snow, my doctor’s office called to reschedule my visit.  They extended my total vocal rest until 3/27/18.  At 9:30 on that date I’ll have an exam to determine the success degree of the last procedure.  Right now, I couldn’t speak, even if I were allowed to speak.  My tongue is not yet recovered from the torture of the five-hour operation.  My left side jaw pain has virtually gone, however, my right side jaw still hurts to move it.  I am still at risk of biting my tongue so I eat food on the left side of my mouth to avoid it.  I wouldn’t say this is all fun.  I trust I’m paying for my progress in advance.

With all these impediments to feeling better, I guess I should be thankful to mother nature for extending my vocal rest.  I do sense there is a  decline in the over-all size of my tongue.  I guess I now have a tongue and a quarter.  I can’t stick it out so I avoid seeing Nancy Pelosi on the tube, since that would be my normal response to the sight of her.  So,  I avoid Microsoft in addition to Pelosi, since both make me want to scream.

Again, I am full of gratitude for the outpouring of thoughts, prayers and support.  I’m thinking that this is all part of the bigger picture to which all of my friends made themselves invaluable contributors.  Love you all!  God bless you.

Today is March 27, 2018.  My appointment was this morning with Dr. Robert Sataloff of Drexel University Medical at 9:30.  I hopped the Orange Line at A.T&T. Station near the South Philadelphia Sports Complex.  I wanted to be a Super Vocal Fold Champion in the mold of the Philadelphia Eagles.  But I confess the apprehension I felt.  I’d had augmentation and some reconstruction in the past but something always derailed it in the healing process.  This time was fraught with all types of problems in the procedure and then the healing process.  Like before, a tickle in the back of my throat, probably from phlegm — also from the healing process.  As I said on Facebook where I’m so fortunate to have loyal supportive friends:  “This healing stuff has been hard work! Tomorrow morning is my second follow-up and the next set of limitations on speech. So far, it has been total. And considering that yesterday was a month of TOTAL VOCAL REST, I did pretty well. It still amazes me that my tongue still has not recovered and my jaw must have really been stretched because the right side still hurts. To bite ones tongue has proven to be too easy! But I slows my generations of training in eating too fast. I’ve regained some of the weight I had lost in the hospital and the first few days at home when swallowing was a stupendous effort but I’m still down 13 pounds from before the surgery. (Yes, I still know how to find the silver lining.) So, I’ll post an update when there is news after I see Dr. Sataloff.”

I reported, when I reported to Dr. Sataloff, that both sides of my jaws still gave me pain; eating was an adventure by virtue of an enlarged tongue with the wound from the procedure that led to a frequency of accidental tongue bites;  the phlegm forced coughing that I couldn’t avoid although I attempted to mitigate the severity of the cough using the suction machine that Hahnemann Hospital lined up for my assistance; and it is still a challenge to take oral meds — although I’ve developed a work-around that helped a lot.

Then the time came for the endoscope.   Dr. Heid Panossian usually wields the endoscope.  He puts on a white cloth glove and grabs my tongue, treating it like the starter cord on a pull-cord rotary gas-powered lawn mower.  With my wounded tongue in its current state, that procedure was less fun than usual but it’s necessary.  Though my open mouth goes the endoscope and I get to watch on the monitor.  It’s all recorded for review by Dr. Sataloff.

We were later joined by the Boss Himself and Dr. Sataloff said positive things.  Coughing had done some damage but it left intact in several areas the grafts that were the purpose of all this agony.  The healing process may continue to consolidate those gains.  We’re doing month-to-month re-evaluations.  I start with speech pathologist appointments for three weeks, starting April 3rd.  For today, to release me from total vocal rest, they introduced me to Michele Horman, MA CCC-SLP who helped me plan my return to the cohort of those who speak.  She gave me no time limits but did emphasize that I was to avoid prolonged usage, especially if I felt strain.

So, where does this leave us.  There are some aspects of my healing voice that are better than before, although — even a month after the surgery — it is early yet.  So I’m going to fight it out on this front, even if it takes all spring.   As I mentioned, I have speech pathologist visits scheduled and a follow-up with The Boss on May 9th.  I may close this portion of the blog after that and start new installments, but I will make that public before I do it.  In the meantime, those who want all the gory details will always be able to  find them here.

I should have mentioned that, even though I’m allowed to speak, I can’t.  I can make some noises that include words.  I can’t do anything with volume.  I know not what it will sound like in advance.  But as things heal, I’m trusting that things will improve.

It took a month and a half before I got my tongue back to normal size.  I no longer run the risk of biting the thing, due to it being distended on my right side.  My jaw no longer has pain at the hinges.  Now we’re working on the voice.  It’s pretty gravelly sounding and runs into a squeak.

Well, the saga continues.  May 9, 2018 was my next follow-up with Dr. Sataloff. It seems that much of the re-sectioning was displaced  by coughing, etc.  This is something I feared in my hospital stay.  I thought I’d seen some tissue in the suction device.  The doctors told me to ignore that.  But I was still fearful.  I had five sessions with the speech pathologist team.  I learned some tricks I can use to control my speech.  It’s not very productive.  I can use relaxation techniques to create a gravely voice that is difficult to maintain.  Doctor Sataloff suggested that I’ll not get where I want to be without another procedure.  He gave me the option to wait until the autumn or do it as soon as possible.  I chose soon.  So, I’ve got another procedure for June 18th.

I missed the winter concert that Doctor Sataloff conducts so I was not going to miss the April performance.  It was scheduled for April 27th, a Friday night.  Betty and I scooted to Marcus Hook, caught the SEPTA rail to Suburban Station and walked to St. Luke and the Epiphany on 13th Street in Philadelphia.  The program included Haydn’s Missa in tempore belli (English: Mass in Time of War) and some contemporary music sung by an incredible choir with a symphony orchestra accompanying.  It was spectacular.  At my follow-up meeting, I congratulated the conductor on an excellent performance.  I also related a time in my youth that still lives with me, despite it being sixty-one years ago.

I was chosen to be part of Clermont County Ohio’s All County Chorus.  We rehearsed at our local schools and met in the county seat — Batavia, Ohio — to be rehearsed by the director of the Cincinnati Symphony Orchestra and then, in the evening, to be led by him in the public performance.  Like Haydn’s Mass, we had an all county orchestra rehearsing and performing together.  To stand in the top row of that chorus, surrounded by incredible sounds was sensational.  I related the experience to Dr. Sataloff.   I probably put all the emotion I feel on that recollection into what I said, because he raised my expectations to follow the next procedure.  He said, “I want you on stage singing in the next concert.”  So do I.

So I’m building toward June 18, 2018.  We have scheduled a 2 hour procedure for additional re-sectioning of my vocal folds, moving somethings around a bit and filling in the lost tissue after the February procedure, a procedure that Dr. Satalof tells me was a record length of time.  I’m going to study how to not cough or clear my throat before the next time.  I’m going rely on the support of friends and family and pray for a good outcome.

I want to be released from the Mi Shebeirach list.