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.

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.