Throat Blog — Busy Days Ahead

Well, my mostly vacation from doctors has come to an end, for now. Mostly, because during this break from normal appointments I did see my new primary care physician (my doctor of 35+ years is retiring), got lab work for my annual physical, and got my PEG tube looked at by my radiation oncologist's NP. But, almost all of these were pretty minor visits of no consequence.

One exception to that is my lab work. My TSH (thyroid stimulating hormone) is now about 4x normal levels. TSH is generated by the pituitary gland, and signals to the thyroid that it needs to produce thyroid hormones. Well, my thyroid glands aren't picking up the phone. So, I am going on a thyroid hormone supplement. Waited a week for Walgreens to fill the prescription until they finally told me they won't have any for 2 or 3 weeks. So, switched to my mail-order pharmacy. No extremely dire consequences for low thyroid hormone in the short term, but I am noticing additional lethargy. Basically, if I sit down, I shut down. Not very convenient when my main activity is sitting in front of the computer.

Tomorrow I'll have my first visit with my medical oncologist for the year. Will include more labs. Not sure what to expect from that visit.

Friday I'll have my long-delayed appointment with the speech/swallow therapist. As I mentioned in my last post, I've been carefully trying out some foods. I've managed to eat a chicken pot pie, several greek yogurts, a shepherd's pie, ice cream, and cream of mushroom soup. All of it caused my mucus production to really increase for a while after eating, but I didn't detect any aspiration. No food in my trach tube. No uncontrollable coughing. So, hopefully she will clear me to try additional/heavier foods.

The food doesn't taste right. The non-sweet stuff tasted way too salty. The sweet stuff way too sweet. I don't know if this is due to the taste buds not having had stimulus for a while or if it is an aftereffect of the radiation. Either way, tastes better than not eating at all.

Next week is the really important week. Wednesday I get my first post-treatment PET scan, followed by an appointment with my radiation oncologist. Thursday is my annual physical. Then the next week I see my dentist and my surgical oncologist.

Meanwhile, I still feel mostly OK. My neck is a little puffy, but I can't feel any swollen glands or unexpected masses. Mucus has gotten slightly better…enough so that I seldom have to use the vacuum pump to clear my throat/mouth. I'm not going to be doing any century rides any time, soon. Considering the last time I did a 100-mile bike ride was 2009, not surprising.

Anyway, that is the update for now. We'll see what sort of amusement park ride the next 2 weeks turns out to be. Hoping more for the Fiesta Train than the Judge Roy Bean.

Throat Blog – Waiting Game

Well, 2018 has started pretty slowly. I had a brief appointment with my vascular doctor's NP. Once I run out of my current blood thinner scrip, I'm going back to an aspirin regimen, which will be a lot more convenient., Two shots in the stomach a day won't be missed.

The CT scan reading also came back. Pretty ambiguous. The area where the tumor was is now "cystic in appearance" and is probably all dead tumor, although the possibility of there still being some live tumor or metastases could not be ruled out. Also, there is an area of dead tissue, fluid and air just above trach tube, which is probably the reason for the decomp odor (which seems to have reduced). The upshot of it all is "wait for the PET scan." PET scan is on 1/31. And, so I wait.

But, not waiting completely passively. I was also supposed to have a swallow therapy appointment on 1/5, but insurance had not yet approved. So, it is now scheduled for 1/26. Not wanting to wait that long to start a little food experimentation, I bought some broth. Other than really loosening up the mucus for a while, it seemed to go down OK. I could not feel any going down the wrong way, and didn't excessively cough,. It was only about 1/4 cup, but that is progress.I

So, I got brave and went for a Blue Bunny ice cream bar. It also went down fine (actually better than the broth, as it didn't trigger extra mucus). It was, however, excessively sweet and rich. Delicious.

Today, I stepped it up a bit and tried some oatmeal. That was possibly a mistake. Triggered extended coughing. Pretty sure a .of oat flakes went down the trachea. So, backing off of that and will go back to carefully sipping broth.

Other than that, I am completely physically socially isolated as much as I can possibly arrange. I have no desire to risk exposure to the flu. I did get a shot, but from what I've read, this year's dose isn't particularly effective. Pretty sure the flu would put me back in the hospital. Working from the house (I have arranged to have actually more work than I will probably be able to complete). I will need to go into the office later this week to review some new development progress, but I am pretty sure we sent all our sick people to CES.

Oh, and I have the first part of my annual physical, tomorrow. Basically involves a lot of fluid collection with a few other tests thrown in. Part two is in February. Will be interesting to see how the last few months have affected my core health. I know my physical fitness is pretty low right now. Spent a few minutes on the exercise bike. Had to stop way too soon. Going to try to do a bit more every day.

Well, a long update considering nothing new has really happened. I'll try to say less about more next time.

Year in Review

Well, the first half of the year was not too bad. I don't have much of a blog record of the first half…I rebuilt this blog after a crash in June and lost all my posts up to that point. They were mostly boring until Guitar Gathering in July. That has become an annual highlight for me. I meet up with 40-50 folks from all over the country who are learning guitar from Steve Krentz…mostly through his Learn and Master DVD course, but also through Youtube and other on-line media. I get the opportunity to once again have it rubbed in my nose…I need to practice, more.

I am the unofficial videographer for the event…I've been able to catch some great performances by other students as well as accomplished musicians (well, quite a few of the "students" are pretty accomplished). Vince Gill, Jack Pearson, Corey Congilio, Phil Keaggy, and a lot of studio musicians who I can't put a name to right now. Some videos are linked in this blog. Others (from previous years) are on my Youtube page ( and some others on my Vimeo page (

I spent many weekend evenings at Scat Jazz Lounge in downtown Fort Worth. Ate many great meals at Reata, Grace, Bird Cafe, Del Fresco's Cafe, and Waters as well as my favorite local family restaurant, La Gondola in Mansfield. Spent many Saturday and Sunday mornings at the Mansfield Starbucks, drinking coffee, getting a little weekend work done, and visiting with my good friend Doug…another guitar guru.

Then, the 2nd half of the year hit and everything went to hell. It is all documented on this site, but I made a quick timeline of major throat cancer-related events:

7/19/2017 First Pain
8/4/2017 Hoarseness Begins
8/11/2017 No Voice
9/1/2017 Noticable lump on one side
9/5/2017 Large lump across entire larynx
9/19/2017 Squamous Cell Carcinoma diagnosis
10/2/2017 First day of chemo and radiation
10/8/2017 Intestinal blood clot
10/9/2017 Emergency surgery for clot w/removal of 125cm of small intestine
10/18/2017 Discharged from hospital
10/22/2017 Swallowing becoming difficult
10/28/2017 100% PEG feeding starts
11/3/2017 Tumor noticeably smaller
11/13/2017 Last chemo treatment
11/17/2017 Last radiation treatment
11/22/2017 Noticed difficulty pulling in air intermittently
11/28/2017 Difficulty pulling in air continuous
11/29/2017 Tracheostomy tube inserted
12/6/2017 Home after tracheostomy
12/20/2017 Noted constant fever > 100.5; ER visit
12/21/2017 Cardiologist orders constant heart logger
12/23/2017 Bad odor (decomp) from tracheostomy; red, tender skin around neck stoma
12/28/2017 Dr ordered hi-res CT of neck and ordered 2 antibiotics

And that pretty much brings me up to the last day of the year. I can honestly say with heartfelt passion: thank God 2017 is over. I am so ready for 2018. I suspect I've still got a few months of bad, but am counting on most of 2018 being on the good side of the ledger.

So, tip a toast to the new year for me…I'll catch up once I can drink, again.

Throat Blog — Too little or too much?

Cardiologist fitted me out with a monitor that I'll wear for a month. I mentioned my fast heart rate and he said that he has the exact same thing. And, he is a bicycle rider. Like me, his heart rate runs 20-30 beats faster than other people he rides with. Confirmed that it is really just a trait, not a condition.

Anyway, I've got a monitor stickied to my chest for the next month. The nurse placed it horizontally, but when I go to bed, I sleep on my side, which made the contacts for the monitor "scrunch up" and lose contact. Which made an alarm go off. Well, I have enough problems sleeping without having this, too. So, I repositioned it vertically. Had to shave a bit of chest hair off to accommodate that. Made the mistake of doing it half asleep while looking in a mirror. I shaved the wrong side. Wore it like that for several days without noticing. Supposed to be just left of center of my chest for best pickup. Well, the app says that it has good signal, good contact, so I'm keeping it where it is.

Before the holiday weekend, the decomp smell got worse. I have gone completely "nose blind" to it, but someone mentioned I needed to clean my car and find out what had spoiled. I realized it was me. I've been accused of being spoiled in the past…well, now I actually am. I emailed the Dr to see if there was anything I could do about it. Also mentioned that my fever remains >101 most of the time. His office responded that I should come in again for a check (I just saw him last week).

I also have been having issues with the skin under the trach tube flange being very red and painful. I am pretty sure it is because I just can't keep it dry…it is constantly covered with mucus that comes from the stoma if I cough.

So, return visit to the ENT/Oncological Surgeon. He said that it is probably dead tissue, but could also be live tumor or infection. No way to know at this point but based on the fever he wants me on antibiotics for a couple of weeks to kill any infection that might be present. Great, my gut was just about normal from the last round of antibiotics.

He also me some specialty gauze to put under the flange and around the stoma to help with the skin issue. A couple of days in, the reviews are good. Virtually resolved the skin pain and it appears to be clearing up.

The nature of the radiation treatment I got is that there is a fairly narrow window of ideal therapeutic radiation dosage. Too much kills functional tissue (muscle, tendon, etc) and can require surgery to remove, well, pretty much everything. Too little and you still have live tumor. No way to know right now. The PET scan will provide some clarity. A high-res CT scan might also help diagnostically, so he ordered one up for me. Got in same day for the CT. Still awaiting the reading from that.

January has gone from no Dr's appointments until the very end of the month to starting with multiple visits per week…speech/swallow therapy, hematology, and likely back to the ENT/Oncological Surgeon to review the CT…all in the first week of the new year. Meanwhile, I am able to spend some time in the office and some time at my home office…well, couch…getting some things done for work.

Throat Blog — Tuesday Night Fever

I've been suspicious that my 15 year old fever thermometer has been reading high. Every time I check at home, it is around 100. But, at Dr's offices it is always 98-ish. So, while picking up some other supplies at Walgreens I invested in a new model.

Got home, started my dinner, and decided to compare the new thermometer's reading with the old thermometer. Well, the new thermometer read 101.7, which is well above the "go to the ER immediately" threshold of 100.5. I didn't feel like I had a fever, and would not have even checked it except for the new thermometer.

So, I packed up a go bag, hopped in the car, and headed to UTSW ER, arriving around 9pm. They got me into an exam room pretty quickly, got me into a hospital gown, then I just hung out for a while. Eventually, after taking many samples of my bodily fluids and one chest x-ray, they determined that I didn't have the flu, nor did I have an infection. Their best guess was that my body is reacting to the dead tumor tissue and the fever is a benign symptom. When the put in the trach tube, the basically drilled through part of the tumor. I occasionally smell decomp coming from the tube (yuck). It is probably there somewhat all the time, but I'm "nose blind" to it.

Meanwhile, they also decided that my heart rate was too fast and really wanted to figure that out. This actually happens just about every visit. I explained that I've always had a faster heart rate. Even when I was riding 100-mile bike rides, my riding (and resting) heart rate was always 20-30 beats faster than the people I was riding with.

So, I managed to talk them down from calling in a heart team, but not before they'd started a liter of IV fluids. Supporting my "just ignore it for now"  was that I have an appointment with a cardiologist on Thursday (primarily to finally rule out any heart issues as a cause for the intestinal blood clot). They started the IV a little after midnight, and told me they'd cut me loose as soon as the hydration bag finished…and it took a little over an hour.

Drove home and crawled into bed around 2am. Actually slept better than I've been sleeping, lately, but I was so tired, I didn't hook up the humidifier (which does make me wake up coughing a bit). Today, went into the office for few hours before my surgical followup on the trach tube. By lunch I was having to force myself to stay awake at my desk. I actually got more productive things done after I got home from the appointment and took a nap.

Oh, that followup established that the trach tube looked OK. Swelling was going down, but airway was still too small to consider removing the trach tube. Next-re-evaluation for that will be the first week of February (after the PET scan). So, I've got to live with this in my neck for at least 6 more weeks.

So, now sitting here with a fever of 101.0. I don't feel like I have a fever…no sweats, aches, or chills. New ER trigger removes the fever from the equation. (Well, I suppose if it were to go over 103, I'd head that way.) Now, just watch for other reactions (rash, chills, aches, etc). I know the routine there too well…we need some time apart.

Throat Blog — It is just swell

Sorry for the dearth of updates. Not a whole lot happened, despite several Dr's appointments. But, enough for a brief post, I suppose.

My medical oncologist really just did a quick review of my condition, but had no new or different insights. He did make it a point to put into his notes that keeping my trachea/natural airway was a priority. Also getting this damn thing out of my neck ASAP (but still when medically appropriate).

The highlight was the eval by my radiation oncologist. He advised that the swelling around the larynx is normal, albeit exacerbated by the irritation of having the trach tube implanted. I had some concern that it could be tumor regrowth, but he nixed that. He also said that we are still working on my goal to keep my natural airway, despite the ENT team's pessimism on that score.

Finally, evaluation for swallowing was still a downer. My muscles and tendons are still very sore and are also stretched out by the swelling in my larynx. So, I have 4 swallow exercises to practice. She advised not to even try to take in anything by mouth (except for the teaspoon quantities needed for the exercises). Re-evaluate in a couple of weeks.

This coming week I get to visit with a cardiologist (to evaluate results of a CT Angiogram I got last week) with the purpose of determining if/when I can move off of the injectable blood thinner and back to aspirin therapy. Then, I'll meet with my medical oncologist for post-op followup to the tracheostomy. My chief complaints are 1) Still have a lot of mucus generation, despite scopalomine and Robitussin and; 2) Pain/irritation of the skin under the trach tube's flange.

So, maybe another week before I update again (no update is actually a good thing…no news is good news here lately).

Throat Blog — Stopped Drowning

I mentioned in another post that I could barely use the humidification compressor that was set up at my house before I came home from the hospital. It would just make me constantly cough and gurgle. So, I mostly abandoned it and was trying to get by with having a moist bandana over the stoma much of the time, and breathing through my nose as much as I could.

Well, turns out that wasn't working too well. Around Friday I started coughing up big chunks of dried mucus; big enough that I'm surprised one did not block the stoma (I could easily have cleared it if that happened, but it was still not pleasant). I started looking this up and found that it is a symptom of …not enough humidification. Add to that, I also saw some minor pink streaks on the inner cannula when I took it out to clean it. Not enough blood to trigger another ER visit, but not something you want to get any worse.

So, I turned back to the humidification compressor to see if I could make some adjustment that would make it usable. It was supposedly set up and ready to go when I got home, so I had not tried to do anything with it. It came with no instruction book, so I was hesitant to turn a knob or anything since I didn't have any reference as to what the knob did.

Googling the compressor model was frustrating. I found out that the knob adjusted the overall pressure (should be set to 50 psi, and that seems to be what mine was set to). But there were no instructions for the humidification "cup" attached to the compressor output. The only instruction I'd received, relayed from my sister who was here when it was set up, was that the water in the cup should not be filled past the bottom line (about 2" from the bottom of the cup).

Finally, after more creative search phrases I found that there was an adjustment on the cap of the cup that controls the amount of moisture being put out. It should be set to 100% (which, counterintuitively, sets it for the least amount of moisture). Upon examination, I found that the adjustment was set to 0%, which I'm calling the "drown the patient" setting. I cranked the adjustment around to 100% and gave it another try. I was able to tolerate the humidity (there was some coughing as the tight/dry mucus loosened up, but nothing like what had been happening before.

It was bed time, so I filled the cup to the line and went to bed with the compressor on. About 3 hours later, I had to get up and refill the cup. Another 3 hours…fill again. It really seemed incredible to me that it was designed to not allow one to get a full nights sleep…heck, 3 hours barely counts as a decent nap for me, lately.

The cup itself is a frosted plastic cup that screws onto a cap connected to the compressor. Hoses and the moisture setting adjustment are all on the cap. When doing one of my multiple refills on Saturday, I noticed that there were more markings on the cup than just that line (the marking, and even the line, are very difficult to see and easy to miss if you aren't really looking for them).

I twisted and turned the cup in the light until I was able to read all the markings. The bottom line I had been filling to was marked "MINIMUM." About 2" from the top of the cup is another line. It is labeled "MAXIMUM." So, based on the only instructions I'd received for the use of the humidifier, I had only been putting in water to the point where I was actually supposed to be refilling the cup. Last night I properly filled the cup to the MAXIMUM line and it ran all night with no need of a refill.

Breathing much better today with less coughing and no chunks. I can't say I got a good night's sleep (the compressor is loud, the humidification drips cold water down my chest occasionally, and I do need to rouse to suction if I cough). Nothing a 3-hour nap won't fix, though.

Throat Blog — Home Again

Well, got out of prison the hospital Monday afternoon and settled back at the house. Came home to a vacuum pump and a fancy humidifier set up in the living room, ready for me to use. The pump gets a pretty good workout. I'm still generating quite a bit of mucus. If I use the humidifier (which pipes moist air directly to my neck) coughing gets pretty ridiculous. It is supposed to keep the mucus thin and easier to clear, and also moisturize the air going into my lungs…a function normally handled my my mouth and nose. But, the coughing makes it totally not worth it to use. That said, I found that if I block the stoma and inhale "normally" I can usually get enough air from my mouth and/or nose and don't cough at all.

I'm going to review the instructions for the humidifier to see if I can reduce the amount of mist that it is putting out…I think it is just putting out too much moisture. There are times when my throat is too tight to do the stoma-block trick when the humidified air would probably be good to have.

Have been tolerating the stoma pretty well, but I woke up at 3AM rapidly breathing. I wasn't really panicked. But, I could not get my respiration rate under control. I was getting plenty of oxygen, but just kept on panting. So, at about 5AM I decided that I should be checked out…concerned that it could be a respiratory issue, tachycardia, or dehydration. Drove to the UTSW emergency room, and they X-rayed my lungs…which were clear. Around 7AM my breathing slowed down all on its own. In fact, as I dozed, the alarm on the monitor sounded a few times for low respiration rate.

No idea what caused it. Emergency room staff at a loss, as well. But, as I was not in actual distress they kicked me out around 7:30AM. They were going to let my ENT team know about the visit, so that they could help to make any adjustments that they might know about to help. Made it back to the house in time to take a nice, long morning nap (well, really replacing sleep I missed with my little adventure).

I believe that my sense of taste is coming back…it might even be back. I've not eaten anything, so can't be complete sure. But, I get a really bad burnt hair taste in my mouth sometimes when I cough that I think is probably the high-protein liquid that I've been taking in through my PEG. I can't really swallow effectively…even trying to swallow saliva causes much of it to just go into my trachea, triggering coughs. So, I've been having to frequently clear my mouth using the vacuum pump.

I've been trying to do some of the swallow muscle exercises given to me by the speech therapist, but the stoma makes all that very difficult. Normally, the trachea moves up when you swallow to block the path from your mouth into your airway. With the stoma in, there is a lot more "stuff" to move during a swallow, plus the entire area feels a lot tighter than normal. I'll just keep trying the exercises until my speech/swallow therapy appointment next week. Maybe there are other exercises or tricks I can use to improve swallow function.

I had a dream a couple of nights ago that I ate not one but two Ultimate Cheeseburgers from Jack-in-the-Box. And, I had a third in reserve. Not sure why that was the menu choice, but I took it as a sign that I'm really, really ready to start eating. Not that I particularly needed a sign to tell me that.

Throat Blog — Ready to Go Home

After hanging out at the hospital for 5 days, doing pretty much nothing, I am more than ready to go home. The only obstacle to leaving today is getting some supplies and equipment delivered to the house…something not likely to happen on a Sunday. So, probably one more day.

I'm already also really tired of dealing with the tracheostomy. About every hour or so enough mucus builds up that I need to use vacuum to suction it clear. Otherwise, I just cough forever. It is a little better this morning, though. The doctors replaced the original insert, which had been sutured in, with the insert I'll have when I go home, which is just held in with a tie. Already it seems that my need to suction it clear is reduced.

The doctors also strongly dampened most expectations of ever having a restored natural airway. While they aren't ruling it out completely, they really think most likely that the cartilage in my larynx won't reform enough to maintain the structure of my airway…meaning that the stoma will be permanent and I'll most likely also face complete larynx removal.

Still processing all of this. I really have a hard time believing that there is no way to surgically restore the cartilage, but the doctors are pretty adamant that it either has to regrow on its own or nothing. So that will mean permanent changes in:

  • Showering: I have to keep water out of my neck hole when showering…of course that means no total immersion, too, so no swimming.
  • Travel: I'll have to make a travel kit to ensure I have everything I need to care for the stoma on the road.
  • Exercise/recreation: There will be some limitations on strenuous physical activity.
  • Eating and drinking: The way I swallow will change since there will be no connection between the trachea and the esophagus.

I'm sure that there will be other factors that I just don't know about, yet, too. Of course, there is an upside: A secure airway. Wouldn't make much sense, otherwise.

Throat Blog — Neck Breathing

After making my previous post, I emailed my doctor that my airway seemed continuously restricted and that it might be getting slowly worse. He immediately replied back that I should go to the ER for evaluation.

Hopped in the car around 4pm and drove back to UTSW ER at the Clements building. Unlike my previous visit, this time I was taken to a room within just a few minutes. I explained the situation to the ER doctor who then called in ENTs to further evaluate.

The ENT scoped my throat and found that the airway was at least 10 times smaller than normal. Ordered some antiinflammatories, but also contacted my Surgical Oncologist. Everyone felt like I would need a stoma (neck breathing hole) put in very quickly.

Was admitted to the hospital with a room in ICU for the overnight (or longer) stay. Antiinflammatories didn't seem to do much overnight. Around 5:30 AM this morning the parade of doctors started. Surgery for lanyngoscopy was scheduled for around 8AM.

By the time the wheeled me into the OR, it was closer to 9AM. The procedure was done under local anesthetics…they needed me to be able to breathe on my own during the procedure. That said, they did give me some kind of happy juice. I really don't remember the surgery…the next thing I knew I was being settled back into my room in ICU.

For the next half hour or so, all I could do was cough. Had a "tickle" in my airway thay no amount of coughing would clear. But, this pretty much eased on its own after a while. Now I have only an occasionnal cough.

I can force air into my mouth by covering the hole in my neck, but haven't really tried this too much. I am supposed to get a better mechanical solution for that tomorrow. This will let me continue to whisper-talk.

I should be camped out here in ICU for 5 days, then they'll send me home with few restrictions (driving is OK…have to be careful not to get water on my neck when showering).

I had really wanted to avoid this. If all goes well, this will be just a temporary bypass until the swelling goes down. Worst case, though wiil see a complete tracheotomy (removal) at some point. That, of course, has always been a possibility, but this step really brings the probability of that course nearer.

Don't get me wrong, though. Having this done is much better than having the small remaining natural airway close up on me and then face this as an emergency procedure (or worse). I think I read somewhere once that getting air was a pretty important life function.

So, here's to breathing a while longer. Cheers!