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).