Throat Blog — What to Expect after Trach Tube Comes Out

Ok, I believe I've finally had an experience that is "typical." My cancer treatment was atypical for several reasons, but mostly because one week in, I got the blood clot in my small intestine. This caused me to miss one chemo and have to double-up some days on radiation to make up for missed doses while I was down. So, not sure how much of what happened to me would necessarily translate into what would happen to someone else. Certainly, some things would be similar, but … I dunno.

However, post-decannulation (removal of the tracheostomy tube) seems to be progressing as normally as you could expect for such an abnormal condition.

Before the tube was removed, if I blocked the tube (which I was routinely doing in the weeks leading up to removal), breathing became more difficult. Not bad if I was sitting, driving, or doing nothing much. But, if I took the stairs or did much of anything that would increase my oxygen load, I had to unblock for a few minutes so that I could breath fast/deep enough to get enough air.

So, despite desperately wanting the damn thing out of my neck, it was with some trepidation I approached the removal itself. A team of doctors (this is a teaching hospital, so nearly every doctor's visit included a few doctors or doctors-in-training) came in at around 6:30AM. Removal was a complicated process that consisted of…releasing the Velcro holding the strap around my neck and pulling the tube out. They then quickly pressed a medicated dressing and then taped a gauze pad over the hole in my neck.

The first thing I noticed was that I was able to breath with absolute no restriction in my airway. My slight fear that without the tube in breathing would be laborious completely dissipated. Breathing was great.

Then, one of the doctors said "When you talk or cough, press your finger here" and proceed to poke me way to hard directly in the stoma. Ouch! The area was not especially tender, but, man, he pressed in a bit aggressively. Twice. I actually batted his hand away (sorry about that) and rasped "Dude!" (sorry about that, too). They all watched me breath for a minute, then booked it out of the room. I must have had a look on my face, or something.

Ok, so as I said breathing was great. Let me modify that. Breathing was great if I was breathing from my mouth. If I breathed through my nose, there was enough back pressure that a lot of air went in/out of the stoma. I really thought that the stoma should be sealed off better, so that afternoon, I had the nurse re-dress the hole. She used basically the same method as the doctors, but used a lot more tape to hold things down and somewhat seal things better.

I left the hospital the same day that the tube was removed. The only instructions I got were "Be sure to block the hole with your finger when you talk, cough, or laugh, until it heals…which will take a week or two." I also got a bunch of information on stopping smoking (I've never smoked) and similar irrelevant advice, as well as things to watch for that might require a trip to the ER. A bunch of pages of stuff, and I foolishly assumed that taking care of the stoma itself would be covered. The entirety of that part was:

  • Keep trach site covered with occlusive dressing.
  • Apply pressure to the dressing when speaking or coughing to avoid air escaping from the hole
>

So, I supplemented with Dr. Google. Found a credible source (MD Anderson). Fold a 4×4 gauze twice and tape over the stoma. Then, cover with a waterproof wound dressing. Change daily.

Ok, this worked much better. If I was lax in covering the hole in my neck when I talked (or if a cough snuck up on me), air would inflate the dressing a bit, then the air would go back into my neck to deflate. This was the case for about a week. Then, my neck became a one-way valve. When I coughed or talked without fully sealing my neck with my finger, the air would inflate the dressing. But, I'd have to press down on the dressing to "burp" the air out around the edge…the air would no longer go back into my neck. Around Day 10, my trachea was healed enough that no air came out at all. I replaced the gauze and wound dressing with a smaller (about 2 x 3) clear waterproof bandage and no gauze.

For my next adventure…my PEG (stomach feeding tube) comes out on Wednesday. It has been hanging unused from my stomach for over 6 weeks now. Meanwhile a crust has to be cleaned away every day from around the exit wound. So far, my only instructions are to be there at 9:30 AM Wednesday and to stop taking my baby aspirin until after the procedure. I might have a few more questions before I leave after this procedure, if the printed followup instructions are as skimpy as they were for the trach tube.

Throat Blog — No More Neck Snot

Ok, the ENT team came in at 6:30 AM and pulled the tube out of my neck, covered it with dressing, and left me breathing from my mouth. All the backpressure is gone with the tube out (as long as I don't cough or try to talk). The first dressing was too loose…regular breaths were still going in/out of the hole. I think it was because my neck was not cleaned before the first dressing was put on, so it didn't stick very well. So, floor nurse helped to re-dress it and we sealed it better. I do need to hold it tight with my hand when I talk or cough, but all my normal breathing is now going in and out of my mouth and nose.

And, my need to cough almost immediately went away, too. Something about installing a foreign object in your throat must irritate things. Of course, when I needed that to have an airway, it was worth putting up with. But, glad that part is over.

I am now released from the hospital (just waiting for my ride to get here). Still have the tube in my stomach…it takes a release from several specialists (nutritionist, speech/swallow therapist, maybe others) and then the controlling doctor. I haven't figured out who the controlling doctor is, yet. I have so many it is difficult to know, sometimes, who to ask what. But, I can probably get this out of the way in the next week or so. It doesn't really affect my day-to-day, but is a bit of an annoyance I could do without.

Ok, back to the salt mines, tomorrow. Actually got quite a bit of work done this morning. But, with all the night-time interruptions the hospital provides for free, plus the early wake-up call by the ENTs, I suspect I'm going to be ready for a bit of a nap by the time I make it back to my house. Or maybe a snack, first (lunch at the hospital was an uninspired burger that was just a patty on buns…most of the food here is quite good but the burger wasn't so delicious).

Throat Blog — Woah, we’re half way there

Ok, the doctor went in with the intention of cutting out some suspect tissue for biopsy, and to evaluate for trach tube removal. But, when he scoped me, he couldn't find any suspect tissue. So, not nearly as sore as I had anticipated (just a contusion under my tongue from where my mouth was wedged open). I did wake up with the trach tube still in place…but the plan is to keep it fully plugged overnight and make sure my O2 stays good, then take it out tomorrow morning and monitor me for a few hours before sending me home.

So, stuck in a room for another 20 hours or so, but getting a few work tasks (and blog updates) done. I hear the dinner bell ringing…gotta go eat, now.

Throat Blog — Closing the Hole

Great news from my Surgical Oncologist appointment, today. The trach tube is coming out! On the one hand, this can't happen soon enough. On the other…I have an engineer coming from Tokyo next week and must be in the office to work with him. So, soon enough is delayed by a week. Since I'll need to stay in the hospital for at least 24 hours, it looks like this will get scheduled for the week of February 19.

While he's in there, he'll also be grabbing some tissue to biopsy. There are a couple of "hot spots" that showed up on the PET scan that are almost certainly just inflamed non-cancerous tissue areas, but a biopsy will provide complete certainty. Can't have too much certainty.

Looked at the pics from the PET scan, and can't believe how big the cystic areas are. Also difficult to believe that the tumor was actually much bigger than the cysts. Hoping that they go down in size over time…they do press on my vocal chords and trachea and are probably contributing to my not having any voice over a whisper. As of now, we are just going to see what time will achieve.

So, next up will be several spoonfuls of barium on Friday to see which way the food goes. I'm still 100% eating by mouth (with a little aspiration that doesn't get very far down the wrong way and is easily cough cleared). But, I'm about 95% liquid by tube. I'm hopeful that removing the trach tube will allow my throat to better mobilize and improve liquid swallowing so that I can get the stomach tube removed, too.

Looking forward to someday having only those tubes that I was born with.

Throat Blog — Sick Hair

I stopped shaving my head back last September. Grew a fairly long (for me) fringe. But, my hair is so fine, it tends to drift up and down with wind, static electricity, or improper thoughts. I suppose I could put some hair gel on it, but not fond of the greasy look (or feel). So, Tuesday I shaved it all off.

Between Tuesday morning and Wednesday morning that is all I did. But, since then people who have seen me frequently during treatments suddenly started telling me how much healthier I looked. At first I really couldn't figure out wh,y all of a sudden, I started getting that comment. And, it wasn't just one or two people. It was several people in different departments at UTSW, several people at my office…

Then I realized…hair makes me look sick. Not like badass "Dude, that is one sick set of wheels!" sick. More like "Maybe you should go lie down for a while" sick.

So, I'm back to a smooth, healthier-looking pate.

Throat Blog — Looking Good

Preliminary PET scan reading indicates the tumor is gone. It has morphed into a rather large cyst (but still smaller than the original tumor). No indication of any issues anywhere else (well, from neck to knees).

So, next oncological milestone will be meeting with my Oncological Surgeon next week. PET showed that my airway looked pretty good, today. However, I know that that changes (some days it is more blocked, some days less blocked). The trach tube itself causes some irritation that leads to coughing and mucus which results in swelling which irritates the trach tube…so perhaps pulling the trach tube would be safe. Or not. Definitely an item for discussion next week.

Still eating pretty much 100% by mouth. Still drinking pretty much 100% by stomach tube. Will start to move toward working at the office more…I have to be here (and I say here because I'm setting at my desk as I write this) next week to support the engineer who is coming in from Tokyo. Normally, I'd fly over there for a month or so, but not an option this dev cycle.

So, progress and good news. Time to get back to work.

Throat Blog — Food!

I have quickly progressed from careful experimenting to eat everything (carefully). I do still have to add hydration (takes me too long to drink liquids, although it is do-able in small sips). But, starting Sunday I've gone almost completely to food-by-mouth. Nothing red (too many doctor's appointments coming up) but every other color is getting a work out.

Pasta, sandwiches, yogurt, ice cream, beef stew…and I hope to continue to grow that list. Most of this is still highly processed (no rare steaks, yet), so pretty easy to digest. It takes a conscious effort to swallow carefully to prevent food from going down the wrong way, so eating is slow. So, I'm opting for many small meals instead of my habit of 2 big ones.

Not sure if it is related, but mucus production seems to be greatly reduced, too. I do cough occasionally when I eat…or more often when I drink, as some aspiration occurs. But, I've not needed to use my vacuum to clear the trach tube in 2 days. Not coughing up as much mucus, but still a little.

So, that is a pretty good lead-in to the rest of the week. Tomorrow is the long-awaited PET scan. My medical oncologist pointed out that on a PET scan, inflamed normal tissue can look like live tumor, so I should not expect to have a definitive answer as to "is it gone?" without a biopsy of any suspect tissue. While I have a few doctor appointments scheduled after tomorrow, I really see anything beyond tomorrow as shrouded in fog. With few exceptions, I can't really know what the next steps are going to be until we see what tomorrow brings.

At the very least, something will still need to be done about airway restoration. I really, really want to get rid of this trach tube. Maybe I've mentioned that once or twice. I'll probably mention it a few more times until it comes out.

Thursday I do have my annual physical with my new primary care physician. I sneaked a peek at the lab reports, and everything looks pretty good from a cholesterol, blood pressure, and blood sugar standpoint. Something about losing 35-40 lbs has a lot to do with these improvements. I do not recommend anyone follow my diet plan, however.

So, impatiently awaiting tomorrow's news. I think I'll go get a snack.

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 (https://www.youtube.com/user/popitz/feed) and some others on my Vimeo page (https://vimeo.com/home/myvideos/page:1/sort:date/format:video).

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.