Throat Blog — How Low can you Go?

I ate Sunday evening (mostly a 10-oz pork loin, sous vide with marinating spices). Then, no food until they let me eat, today, which was around 10 AM.

At 5 AM they came in and took some blood for labs. They came back at 7 AM and said they needed to recheck my glucose…the labs came back with 55. So, they did a finger stick so that they could get a good read. After all, I was coherent, actually doing some work emails, not sweating. I was a little shaky, but not terribly so. The finger stick came back…47. Ooh, I don’t know what is scarier. That my blood sugar got down to 47 or that it didn’t affect me mentally. Maybe I’m always behaving like my blood sugar is that low, so I just didn’t notice.

Anyway, they gave me a fast bag of glucose (since I still couldn’t eat or drink). Next check, blood sugar was 185. Well, we don’t want it that high all the time, but they said that was pretty normal after getting that much sugar water into my jugular that fast.

Around 8 AM they wheeled me down to X-Ray so that they could confirm that my g-tube was working as it should. It was. So, they gave the go-ahead for food and drink by mouth (or by g-tube). I ordered oatmeal and a breakfast sandwich. Also Orange Juice. I figured if it made me cough too much, I could always pour it into the g-tube.

After that, I was just hanging around waiting for the social worker (arranges for home supplies…which I don’t need) and dietician to come by, then I was free to go. To work…

It feels a bit like I was stabbed in the gut. Oh, wait. I was stabbed in the gut. Took 1mg of morphine for it, yesterday, but nothing else. I’ll take some Tylenol, tonight. Really, it only hurts when I cough. Or get up. Or walk. Or sit down… Well, I know that will go away in a couple of days. It is already much better than yesterday.

Still waiting for the appointment to do the 2nd biopsy. I bugged 2 of my doctors by email and every doctor that came into my room, today (3 or 4) to try to get it done today, while I was already there. Well, didn’t happen. So, more waiting. Not sure what is worse, the not knowing (but pretty sure) I’m experiencing now, or the hope (false though it was) I had for a couple of weeks after the first biopsy. I’ll have to try not to think on that some more (as such thinking is usually at 1 or 2 AM).

Still planning the multiple upcoming trips (San Diego, Pennsylvania, Houston, Nashville) but planning for contingencies, as well. I’ve also got a suitcase packed and in the car ready for an extended hospital stay. Can’t be too prepared.

Throat Blog — Up in the Air, Again

I found out when I had my followup with my ENT surgeon that the biopsy they did at that time was just from tissue in my throat, not from the mass in my neck. I was rather gobsmacked when I heard that, as the cancer was never in my throat…it was in a tumor in my neck. So, I’ve had a few weeks of false relief. Well, I guess the relief at that time was real, but it was based on a false premise.

When we looked in my throat during that appointment, you could basically see the tumor (because I’m convinced even without the 2nd biopsy that it is a recurrence of the original tumor) pushing into my trachia and basically closing it. Very little airway left. On the plus side, it actually makes my voice a bit louder, as that entire squished together area vibrates with the air pushing through. But, plenty of downside, too.

For one, it is progressively making it more and more difficult to eat and nearly impossible to drink. I’ve been able to keep up with calories (at least 1800/day) but my hydration has suffered. Suffered enough that I suggested getting a G-tube (PEG…tube into my stomach for hydration and nutrition) placed, again. Even though I hated having it in, before, I much prefer it to dehydration and starvation. The lesser of two evils.

Today, I got the tube put in. Simple enough that they don’t even put you under. But they do give you fentanyl and Versed and keep you overnight so that they can check to be sure everything sealed up good. Tomorrow they’ll inject some dye into the tube and watch on a fluoroscope to be sure everything goes where it should be going. Until then, no food or drink by mouth (or tube). I’m getting IV hydration…and probably starting to get hangry. I could use a good burger right about now.

Next, I’ll be getting the Ultrasound FNA biopsy. Hopefully this week, but no one has called to schedule it, yet. I had hoped that I could get it done while I’m here, but apparently insurance would be an issue…it is approved as an outpatient procedure, but since I’ve been admitted to the hospital, it would probably have to be done as an inpatient procedure, which insurance hasn’t approved.

Probably a moot test, though. It looks like a duck, quacks like a duck, and swims like a duck. The biopsy will just confirm that it really is a duck. Shortly after that positive (well, in the medical sense, not the emotional sense of the word) result, I will likely be scheduled for a full laryngectomy. By shortly, I mean it could happen as early as later this week. I’ve got mixed feelings on that. I would really like to be able to do my training event in San Diego next week. On the other hand…this needs to be taken out of my neck ASAP. The bigger it gets, the more problems it causes, and, I would imagine, the more surgical complexity it would add.

Meanwhile, the G-tube hurts when I cough, but otherwise looks OK. And, they’ve got morphine to take the edge off the cough pain. Since I can’t drink or eat, coughing is greatly reduced. I do plan to continue to eat as much as I can by mouth for as long as I can, then supplement with tube feeding if necessary.

I titled this post “Up in the Air” but really probably sinking pretty low pretty quickly. I’ll try to keep my head (and trach tube) above water and carry on as best I can for as long as I can.

Throat Blog — Things are Swell

Well, things are swelling, anyway. A few things going on since I got the trach tube reinstalled.

First, all the air leaking out around the tube has stopped. It just took longer, this time, to achieve a tight fit. But, now all is better and I don’t have to press it hard to keep air from leaking when I talk. But, stridor (difficulty getting air through my airway) with the tube capped has gotten worse, as have my swallowing issues. I can still pull in air, but only really enough air if I’m sleeping or sitting still. Any more than that, and I need to crack the cap a bit to let air in through the tube. I’ve somewhat McGyvered my cap so I can just partially uncap so that some air comes through the tube and some through my mouth, or I can completely uncap. I’ve also trimmed back the little release tabs so that they don’t snag my bandana.

Next, the mass of whatever it is in my neck continues to grow. In my appointment, today, my ENT surgical oncologist wants to have a biopsy taken from another area to reconfirm whether it is cancer or not. He then offers two prognosis: If it is not cancer, we can do a partial laryngectomy (“Supracricoid Laryngectomy“) that preserves my airway, but removes my already destroyed voice box. He said that decision would be made during surgery…he would start as a full laryngectomy, but take additional lab samples. If they came back cancer-free, then the partial…if cancerous, then the full laryngectomy.

Meanwhile, I have a 2nd opinion appointment scheduled at MD Anderson on May 14th. Between now and then, I have a trip to San Diego and a trip to Pennsylvania, both for work. I’m really hoping that we can put off the major surgery until after Mid-June, so that I can also make my annual pilgrimage to the Guitar Gathering in Nashville. But, as for the 2nd opinion, I’ve already told them that I don’t doubt my UTSW doc’s prognosis, but since it has such long term implications (no swimming for life, some reduced activity for life, no satisfying sneezes for life, breathing through a tube in my neck for life, etc.) I want one more set of eyes on things to answer the question “Can this be repaired rather than removed?”

Because my swallowing issues are getting progressively worse, I’m having even more trouble keeping up with hydration…and eating is more of a chore, but I have been able to keep my calories up to 1800-2500/day. So, will probably get a PEG put in…hopefully before the trip to San Diego. And, because the mass continues to get bigger, the doctor has ordered another biopsy…an ultrasound fine needle aspiration biopsy, which is a relatively simple, no-sedation procedure. He requested that it be ordered stat…so hopefully I can pop over this week or next and get that done. If that comes back positive for C, that would likely move everything forward (and be the nail in the coffin for hopes of keeping any natural airway) and also eliminate the 2nd opinion trip (and probably the business trips, too).

So, lots of stuff going on in the next couple of weeks, then lots of travel the weeks after (assuming C doesn’t reassert its primacy).

Throat Blog — Breathing Easier

That isn’t actually entirely true, but this post is about my lungs…in as far as my lungs go, it is very true. I got the CT results from this week’s scan, today, and the news is very good. 8 months ago I had 9 or 10 nodules, all 5-15 mm and growing. As of this week, there are only 6 detectable nodules, and 5 of the remaining have significantly reduced in size:

  • 13 mm -> 3 mm
  • 14 mm -> 5 mm
  • 14 mm –> 5 mm
  • 15 mm –> 5 mm
  • 5 mm –> 1 mm

The one remaining has gone from 10 x 10 mm to 16 x 13 mm. Still very small and not growing fast (from what I’ve read, unchecked cancer nodules like this will double in size every 3 months).

So, even though none of these nodules ever affected my breathing, I am breathing much easier, knowing that the chemo drug I am on is working.

Now, if I can just get my throat situation settled, I can look forward to 100% easy breathing.