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.