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 — 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 — 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.