I will confess, I’ve been struggling with this post. But I came to the conclusion that my many wonderful and considerate Facebook friends and supporters are entitled to an update. It’s my fault. I started this. I am continually in debt and I feel gratitude for all of you who have born with me during all these fun procedures.
My first procedure produced a biopsy that identified my leukoplakia (a white growth on my vocal fold) as in-situ cancer. That was my first blessing: it was in-situ and not invasive and it was caught early enough to keep it from becoming worse. So the clock started as I now was on schedule for visits to my E.N.T. specialist for endoscopic examinations of my vocal folds. Well, the leukoplakia came back, so I was off to the O.R. for another excision. Now I’d had two scalpel surgeries on my vocal folds and, as the idea is to remove all at-risk tissue, that left a gap in my left vocal fold. That gap causes the hoarseness you frequently hear when I speak. Fortunately, this leukoplakia was not malignant and was moderate dysplasia. Subsequently, I found myself on the quarterly visit schedule for endoscopic examination.
Drat, another one showed up. My local surgeon said to me, “I’m not comfortable attempting excision of this growth due to its location. I want to refer you the Helen Graham Cancer Center for radiation.” That scared me as I knew there were very special risks attendant in radiation of my vocal folds, but by now, Dr. Connolly and I had been working together for a while, developing rapport and friendly banter in the process. So he and I had discussed various modes of treatment and where it was delivered. He mentioned a classmate of his who would sometimes ablate (not excise — he used a laser to remove these critters) the leukoplakia in his office. Walk in with one and out after it was removed. I mentioned him to Dr. Connolly and he instantly said, “I can refer you!” — so I was off to N.Y.U. to see Milan Amin, the chief of Otolaryngology at the Langone Center.
New York University Voice Center was impressive, as were both Drs. Milan Amin and Ryan Branski—the Chief and Associate Director of the Voice Center. It was an experience, since the room where I was examined was full of doctors who were teaching or learning otolaryngology. I was told that my procedure would be a bit too complicated to perform as an office outpatient. So they scheduled me for January 2013 as an N.Y.U. outpatient surgery candidate. And I went back home to prepare for a date with a laser at the beginning of the new year. Again, the biopsy came back benign. But now I’m on the list at NYU and one of my follow-ups dictated another ablation.
Again, I went to N.Y.U. as an outpatient laser surgery candidate at the Langone Center, with follow-ups coordinated with my local E.N.T. specialist. Doctors Amin and Branski recommended vocal therapy which I started in Wilmington. At one of my visits for an endoscopic check on my vocal folds I asked Dr. Connolly if the vocal therapy might lead to a normalization of my speech. “You have a damaged instrument,” was his reply. I’ve heard virtuosos play damaged instruments and make them sound good. I wanted that.
Now comes the next step. All during my treatment, my piano teacher (who teaches voice at the Delaware Music School as well as in private practice) and the cantor at Congregation Beth Emeth kept telling me, “Go see Doctor Robert Sataloff at Drexel University — Philly E.N.T. He’s the Best in the World!” I came to the conclusion that I needed to try something else, since I was seemingly at a dead end with my current course of treatment. So I got an appointment.
As impressive as N.Y.U. Voice Center seemed, Dr. Sataloff was doubly impressive plus. I was told to expect a 7-8 hour first visit. I thought that meant I would see staff for seven or so hours and Dr. Sataloff would breeze in for a half hour or so. NOT! He almost met me at the front door and spent a bunch of time with me before sending me to various specialists in areas of the practice. At one point, Dr. Sataloff, who is an incredible baritone (check him out on YouTube) sang me a beautiful song: “Van, your case is not hopeless.” He identified the danger of my acid reflux and my vocal fold condition and how both are related. He recommended two books for me on the subject. Bought them. Read them. Changed my behavior. And he introduced me to my Vocal Therapist — Bridget Rose. Well, since moving my throat to Philly, I’ve had three more ablations, the most recent was almost as troubling as the very first Cancer diagnosis. My last lesion was classified High Grade Dysplasia. It almost made me cry! It’s Cancer minus a skosh. So, here I am Lord, standing in the need of prayer.
On Tuesday, June 20th I am going to see my Vocal Theapist to see how I can maximize the remedial steps that were taken at the same time as the removal of my lesion on June 6th. Bridget Rose is a patient and competant professional affiliated with Dr. Sataloff who has suffered my attempts at being clever at the cost of being a better student and patient. I’m going to work with her dilligently and I promise to be a more responsible partitipant in my own care. The injections of Cymetra™ into my vocal folds had the initial effect of allowing me to speak with considerably less hoarseness, and hoarseness has plagued me since my scalpel surgeries early on. But the beneficial effect seems to have dissapated and I’m hoping Ms. Rose can help me recover. I’ll post it here when things change or I get news.
The visit was productive on 6/20. But it really didn’t seem to give me anything that I could use to make things better. I learned some voice box massages and I’ve tried that a bit but without great improvement. So the next thing is to visit Dr. Sataloff on the fifth of July. We’ll see what he has to say.
Maybe I shouldn’t have gone to see Dr. Sataloff! But bad news can be good news if it prompts positive action and I’m hoping that’s the ulitimate outcome. He’s concerned about a protruding bump on my right vocal fold. It actually touches the left fold and that’s new. He asked me to schedule a follow up for August 2nd with surgery scheduled for the 7th. If things look much better on the early August visit we may cancel the surgery. I don’t hold out hope for that, however. I’m trying a proven visualization trick. I’m visualizing scrubbing bubbles from my immune system cleaning away anything nasty that they find on my vocal folds. Meanwhile, I’ll stick to all the disciplines that have shown to be non-destructive: anti-acid reflux measure like not eating withing three hours of lying down, avoiding acid loaded foods, using a bed-wedge to elevate my head 5 inches when I sleep and I’ve gone a step farther. I’ve virtually stopped all spirits. There is a bit of literature suggesting that alcohol promotes dysplasia and I don’t want to risk that. So Dr. Sataloff’s scheduling leaves me free to visit Paris for the Kiwanis International 102nd Convention. I’ll probably justify the “virtual” in the sentence above by doing a cognac after a great meal.
I am also sticking to my HFLC diet and that’s helped me lose over fifty pounds. Now that I’m back from Paris and having lost two pounds more in the process, I’m feeling good about my diet. Now all I need to do is stay positive until 2 August.
It’s now that date mentiond in the previous paragraph. Happy news would include hitting minus 58 in my weight loss program. Other kind of news: It’s official, I am scheduled for another surgical procedure for August 7th. That’s a habit by now. This is number 9 in the string of work on my vocal folds. Stay tuned for the details.
Well, yesterday was the procedure and Doctor Sataloff called the next evening with the the results: In-situ Cancer was what the biopsy discovered. I can’t say I was surprised, since this growth extended to the opposite vocal fold. Again, Dr. Sataloff said we were lucky to have acted when we did. I had suspected this result even more due to some of his comments when he scheduled the procedure. He as much said that’s what he saw — the prospect for the growth to be cancerous. That’s why he uged an early August surgery date. The next step will be decided at my follow-up visit on 8/15. I’ve already heard three ooptions to consider: 1. Immmediate re-schedule for another procedure to clear up some items that couldn’t be handled in the last surgery. If you do a surgery on the right vocal fold a surgery on the opposite vocal fold the two sides might try to heal by joining togther. Vocal folds have to be apart to work. Growing together makes them useless and leaves the patient speachless. 2. Watch and intervene as suggested by the vocal fold evidence. 3. Radiation, but that is a last resort as you can only a radiation therapy course once. Once the six weeks treatment is over, it can’t be repeated and it has risks I consider unacceptal. It’s last resort.
Now, I’ve got the best doctor in the world for what’s confronting me. It’s not my perception alone. Everyone tells me it’s true. Soem people who I’ll never know have found a way to let me know. There are pictures of Robert Goulet; Patty Lobelle; Peter, Paul and Mary; Julie Andrews, Luciano Pavotti and a few dozen others on his waiting room walls pledging undying love and gratitude for his help. I think I might have a picture on his wall as well. Only mine is one I took through his waiting room window. I called it Sataloff Skyline.
I gave him a copy and he asked for it digitaly to add to his website. He wanted to know how to credit me. But the only credit I’m after is relief from dysplasia and worse on my vocal folds. I’m betting I’ll get it.
August 7, 2017 had been the day. My stalwart and caring spouse, Betty Olmsted, and I took her car to 218 N. Broad Street in Philadelphia for my outpatient procedure. I later learned that the difficulty of my surgery meant I’d be there for quite some time. Dr. Sataloff removed the suspect tissue and sent it off for biopsy and then perfomed an injection of a colloidal substance called cymetra. Cymetra is an injectable material made from cadaver human skin using a special processing technique that insures safety from injection transmission. Cymetra has excellent compatibility with human tissue and no allergic reactions to this material have been reported. Voice specialists use this material for vocal cord augmentation procedures. The material helps restore vocal cord closure in patients with insufficient vocal cord closure during voice production. Of course, when your vocal folds gain that much weight, regaining the effective use of your voice is a bit problematic. No matter, since I was on total vocal rest for quite some time afterward. On August 8th, however, we got a late night call the the news that the biopsy came back in-situ cancer with some signs of developing invasive characteristics. In my follow-up visit, Dr. Sataloff gave me a bunch of test prescriptions: CT Scan of my chest, CT scan of my neck, an order for an investigation of my esophagus by a pulmonologist and a test of my acid reflux (all the good work the doctor was doing and preparing to do would be shortlived if bathed in acid.) I’m scheduled for the next procedure in October. But meanwhile, Betty and I got another late evening phone call with some results. Dr. Shulman was comforting. He explained that cancer shows up in CT Scans as pin holes. I have a snowflake, and that is not characteristic of invasive cancer. So the odds favor I’m in the clear as to the spread of things. But that snowflake means I can look forward to CT Scans for the next five years as a precaution. If you care to learn as much about pulmonary nodules as they taught me, here’s a link: http://pubs.rsna.org/doi/full/10.1148/radiol.2017161659
It leads to “Guidelines for Management of Incidental Pulmonary Nodules Detected on CT Images: From the Fleischner Society 2017”
I have to give credit to both Doctors for their concern for my welfare. The both called well after business hours with news I needed to hear. Neither pulled any punches although neither hung any crepe either. I will remain optimistic with Steven Wright. I heard him say it on laugh USA: “I have decided I’m going to live forever. So far, so good!” Me, too!
Before my next procedure I was to complete a list of things, like CT Scans, bronchoscope, EGD (Esophagogastroduodenoscopy — say that three times fast!), esophageal manometry (they stuck a tube down my throat and monitored my acid reflux levels for 24 hours) and a surgical pre-clearance. Only the pre-clearance appointment, the bronchoscope and EGD are still to be accomplished. But I feel like I’m majoring in medicine.