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!

Throat Blog — Day 11 Post Treatment

My last radiation treatment was 11/17. All the doctors advised me that I'd feel worse for 10-14 days, then would start to rapidly feel better. Well, today is day 11 post treatment…and I am definitely still in the "feel worse" phase. Its all in the throat, too. Throat is very sore. A lot of difficulty swallowing…and if I try to drink any water some of it goes down the wrong way and triggers a coughing fit. Really, just about anything can trigger a coughing fit right now. And, my airway is a little bit constricted all the time. Not enough to panic me, but I can feel the air forcing around probably my vocal folds both when I inhale and when I exhale.

Sleep is fleeting…I have to wake up enough to cough or the mucus builds up too much and gurgles in my airway. So I find myself sleeping fitfully at night and then dozing off a lot during the day.

I skipped going to the office on Monday, but did go in, today. Really would probably have skipped today, too, but I had a doctor's appointment this morning and the office is only 15 minutes away. Not going to stay until 5…probably will head home around 2pm.

Today's appointment was with a hematologist. We are trying to determine if/when I can go off the blood thinners. To determine that, I'm getting scheduled for a CT angiogram to see if I have a lot of plaque build up in my arteries. Also another battery of blood tests. Might know something in early January.

It seems that I have a few blog addicts reading these posts. If I don't post to the blog at least every 3 or 4 days I start to get texts and emails asking if I'm OK. So I'll try to keep posting every few days, even if not much is happening.

Throat Blog — All Choked Up

Wednesday I went to the swallow/speech therapist. But, the day's drama actually started at my house as I was getting ready to leave for that appointment. I've mentioned that I have a bad cough that sometimes turns into a gag. What I've not dwelt on is sometimes I gag hard enough that I get a mouthful of whatever is in my stomach…which is usually very acidic. Well, a brand new bad effect from this arose.

I had a coughing fit, gagged, got a mouthful of crud…and then started having trouble pulling air in. Oddly, exhaling was no problem, but inhaling felt like I was working against a vacuum. I was already agitated and this caused me to panic a bit…which made me want/need to breath faster, which just exacerbated the feeling that I could not get enough air. I was moments away from dialing 911 when I talked myself down. I was getting air in. I just needed to calm down and try to breath normally. It took about 5 minutes, but I was able to finally get it under control.

So, then headed out to the speech/swallow therapist. The session was not the x-ray swallow study that I was expecting. This was a consult where the therapist went over exercises designed to maintain/improve my swallowing abilities. I told her about my episode and she advised that the next time this happened to do a controlled slow breathing in through my nose then out through my mouth.

Well, I've had two more similar incidents, today, and both times I was able to keep my breathing (and panic) under control. Still a very uncomfortable feeling that I want to avoid.

Today was Thanksgiving. I spent it at my house, reading, listening to some music, watching some TV, napping, and feeling thankful that I'm still around to post to this blog. That pretty much sums up my plans for the rest of the 4-day weekend. Just want to get through it with the least amount of drama.

Even though treatments have ended, I still have doctor's appointments. Next week I'll go to a hematologist to discuss how long I need to keep taking the blood thinner and I'll also meet with my Medical Oncologist as a followup consult. After that appointment I'll also go get some IV hydration. Dcember, though, has only one scheduled appointment as of today. Next major appointment will be the PET scan that is scheduled for January 31st.

I'm not sure, yet, whether I'll go into the office around those appointments next week. If this cough eases, then I'll likely book some office time. Otherwise, I'll do what I can by remote from my house. Expecting to be back in the office full time in early December, but my actual condition will dictate when that actually happens. I did manage to make it in to the office most days during treatment…but as promised by my Oncological team, I feel worse now than I did at any time during treatment. Not terrible (except for the cough/gagging) but certainly noticeably more fatigued…which is just a good excuse to take another nap.

Throat Blog — Treatments Over

Well, last Friday I finished up radiation, so now just counting down to the end of January, when I'll have a PET scan that will tell us if any live tumor is left. Meanwhile, all of my cancer care team have told me that I'll continue to feel worse for about 10 days and will then rapidly start to feel much better.

This weekend my cough got much worse. Even being on scopalomine and Sudafed, I have to frequently clear my throat, which entails me making a horrible throat noise and sometimes results in me gagging. Not a sound I want to inflict on anyone else, so I skipped a friends birthday dinner on Saturday and basically sat around the house all weekend.

Monday, upped the ante by adding an extremely raw throat to the mix. I did go into the office for a little while, but really only because I had a 1pm appointment to get IV hydration and it is easier to go from the office than drive from the house.

Tuesday my throat was a little better pain-wise,  but got very little sleep so I worked from the house. Same thing, today, except the sore throat is very sore again. I'll leave in a little while to go to swallow study…and I have no idea how I'm going to swallow anything. Even just taking my nightly meds caused me to choke and gag.

I'm really hoping that since the sore throat / cough was one of the last side-effects to appear that they will be one if the first to disappear. No scientific basis for that, thought…just a really intense hope.

For Thanksgiving I'm invited to several places to go watch other people eat turkey with all the fixings. If my throat will cooperate, I'll go…but if it is still this bad, I'll spend it in self-quarantine at my house.

So, I'm really looking forward to November 28 (the 11th day after treatment ended). I'm expecting to able to really eat starting in early- to mid-December. My nutritionists have given me a transitional diet…I'll start with clear liquids for a while before transitioning to fully solid foods. I've never looked forward to Jello quite as much as I am right now.

Throat Blog — The Future is Uncertain

Well, not much clarity from today's meeting with the doctor. He is still very encouraged by my progress, but we really won't know if the tumor is completely gone until my PET scan…about 2 months from now. However, he is seeing recalcification in the area of the thyroid cartilage which sounds good.

Overall, he feels strongly that chemoradiation was the right thing to do (the alternative was immediate radical neck dissection with complete tracheotomy).

He really wants me to try to eat ASAP. So, I'll start trying a few small things and see how it goes. I don't see how I can get much down…still gagging if I cough and even getting pills down takes some time. The Sudafed has really helped clear up the mucus (but radiation treatment seems to increase the mucus even with the Sudafed in my system, so not as effective as it was on Sunday). It also hurts when I swallow. Not excruciating, but maybe level 4 pain on a 1-10. Well, I'll just have to see what I can do.

In my early 20's I took a road trip with some friends to Padre Island. We camped all week on the beach. Amazingly, I did not sunburn at the beach. I was pretty good about keeping sunscreen on. However, driving back the weather was great, the sun was out…and I spent hours driving with my elbow propped out the window. And that is what burned…my left arm got thoroughly toasted. One of the worst sunburns I've ever had…until now. Over the weekend a lot of dead skin peeled off my neck where the radiation has been being applied. Now, my neck is bright red, raw, itching, and painful. In three days, I'll be able to put some better healing ointments on my neck, but for now I'm stuck with using basically petroleum jelly mixed with lanolin. It does lube up my neck and ease some of the symptoms, but also leaves me greasy, sticky, icky, yucky. Another reason to be glad only 3 sessions left.

Throat Blog — Gag Me With a Spoon

Actually, this weekend it doesn't even take a spoon. I've had a pretty continuous cough (throat irritation generating a lot of phlegm). Several times this weekend my cough has triggered gagging. I've managed to not totally lose it, but when it happens it takes several tense minutes to settle things down. This is not nausea at all. Really looking forward to seeing this phase go away.

Other than that, I'm not noting any other substantive changes. The tumor does seem to be smaller, but with other swelling that is really difficult for me to judge. I'll get a better read on this on Tuesday when I meet with my Radiation Oncologist. We are still hopeful that this week will finish off the tumor.

This will be my last treatment week. Chemo on Monday, then radiation Monday – Friday, then done. Well, my medical team says that I'll have about another 2 weeks of downslope after the last radiation before I start to really feel better. That said, other than the gagging, I don't really feel bad. I don't have a whole lot of energy, but I don't feel particularly weak.

Assuming the tumor is gone, the next thing on the worry list will be what can be done about the structure of my trachea. From what I can tell (and, again, I'll get a better read on this on Tuesday), there has really been no regrowth of the thyroid cartilage. That is a major tracheal structure, and I'm not finding much on Google in regards to surgical restoration. Hopefully I'm just not finding something that exists. Without restoration I'm afraid the only option will be tracheotomy, which I really want to avoid.

I've been able to make it into the office most days (well, except for Mondays which are totally taken up with treatment). I'm certainly not at my most productive, but it feels better to go in and do something…even if I could do most of those same things from the comfort of my living room. Plus, my treatments are about 15-20 minutes from the office, so it is really more convenient to leave from there instead of from my house, which can be 45 minutes to an hour away from treatment.

I am ready for the treatment break for so many reasons, not the least of which is the anticipation of taste, swallowing, eating coming back. I really, really miss food. My transition to eating goal is December 10…and I want to be eating most of my food by Christmas. I'll be sure to take some foodie shots as I move in that direction.