Catching Up on Happenings

Sorry about the dirth of posts, lately. I’ve been pretty busy during the week days (working) and pretty much crashing on the couch most nights when I get home. But, right now I’ve got a little down time waiting for an appointment to start.

So, a quick review of my status:

  • Sleep is a little improved, but still not great (thus the crashing).
  • I’ve gained 7 lbs in 3 weeks and still gaining.
  • Wasting from malnutrition and inactivity in the hospital causing some right shoulder issues.
  • Lymphedema is slightly better, but goingto physical therapy for that, too.
  • Last Friday had an ER visit due to shortness of breath (probably dehydrated).
  • CT during ER visit showed suspicious area in liver, but not conclusive of anything.
  • PET scan on Monday shows the expected multiple nodules (tumors) still in lungs, but also likely tumors in liver.
  • Expected chemo protocol will not change. Expect to start in a few weeks.

Ok, so a little more detail. On the sleep front, during ER visit, told the ER doctor that Ambien was also not weinsomorking. She prescribed two meds that seem to be more effective: one for restless legs (which really cause the insomnia) and another to help me get to sleep (sedation). This combination seems to be working better. I still have some nights where getting to sleep is difficult, but do sleep through the night once I go out.

I’ve been eating well. I am trying to change my eating patterns to get most of my eating done at breakfast/, then a lighter dinner. I am doing this because, as a result of all the changes to my neck and throat, the sphincter that normally keeps food down is gone. So, if I lie flat and have anything at all on my stomach, it wants to flow on up into my mouth and nose. So, trying to make dinner lighter and earlier and also propping my shoulders up to go to sleep. Once my stomach empties, I tend to shift on down into the bed with no issues. Overall, though with the better eating, my energy levels and weight are both improving. I’ve gained back about 7 lbs since I started eating by mouth, again (about 3 weeks ago). Not really limited on what I can eat… I just have to be sure to chew very well and wash things through with plenty of liquids to keep food from sticking in my esophagus. No risk of choking…no airway that way…but when food is stuck, the next just bounces back into my mouth.

I am, though, seeing the effects of malnutrition. My upper body pretty much wasted away. So, now I am having to do physical therapy to try to restore some of the lost muscle. This is more complicated than I would ever have expected, as I can’t just lift weights. Because some of the muscles are so far gone, if I just lift, my body will recruit the wrong muscles and do more harm than good. So, I have some very specific, almost no-weight, excercises to do that isolate to those muscles that I’m trying to build back up. In the clinic, they are using some sensors that they put on the muscles I should not be using…if those muscles are used a little box beeps. I have to concentrate on relaxing those muscles during the exercise to stop the beeping. I’ve ordered a similar (but much less expensive) unit that will do the same thing through an app and that I can use at home. I’ll report later on how well that works…probably won’t have it until next week.

While on the subject of physical therapy, I’ve also started therapy for the lymphedema (swelling in my face and neck). It involves some specialized massage (very light) starting around my torso then moving up into my face and neck. Lymphedema has improved some, but still neck is too swollen for the electrolarynx to work, well (and I keep forgetting to carry it with me). That is actually the appointment I’m waiting for right now.

While I’ve generally felt ok, last Friday morning I woke up at 4:30 AM feeling like I could not get enough oxygen. Checked my O2 level, and it was 98, so it was not actually lack of oxygen. Checked BP and it was 80/60, which is probably why I felt the way I did. I got up for a little while and checked again…BP had come back up to 125/80 and I felt better. Went back to sleep. Woke up feeling meh but went to physical therapy then on into work. Around noon, I still felt “off” and also my hands were starting to tingle (which my Dr said to watch for and immediately come in if happened) so I went to UTSW ER. Unusual for a mid-day ER encounter, I waited 6 hours in the waiting area before getting an exam room. By then, most of my symptoms had abated. I explained my reason for coming and posited that it was likely to be either dehydration or a blood chemistry issue. ER did lab work (all OK), took an X-ray to rule out pneumonia (also OK) and a CT to rule out PE clots (also OK for that, but found other unrelated things). They gave me a bag of fluids, coming to the conclusion that it was likely dehydration and sent me home at 1 AM.

As to the unrelated things on the CT, it showed some suspicious but inconclusive spots on my liver. I emailed my medical oncologist to be sure he also saw the scans. He advised that it would not change my planned therapies.

Monday I had my scheduled PET scan (mid-cranial to mid-thigh). Results from it were more detailed, showing the expected lung nodules (some had gotten bigger in the 4 months since I stopped my last chemo rounds). But, also showed unexpected likely tumors in my liver. Not very large, but any additional metastasis is distressing. I have an appointment in a couple of weeks with the medical oncoogist, so will get a better update, then, and will also get a definite start date for chemo. I believe he wanted to be sure I had built up some reserve (i.e. gained weight) before starting. I’d be OK with starting tomorrow, but a couple of weeks shouldn’t matter in the long term.

Next big thing will be a procedure next Tuesday to punch a hole from my trachea into my esophagus and install a one-way valve (TEP). This will allow me to close my airway during exhale to force the air into my esophagus and mouth, enabling me to vocalize better…well, as right now my vocalization is at 0%, anything above that will be better. I have heard other patients talking this way and, while it isn’t like a true voice, it is louder and more understandable than using the electrolarynx. Hoping for the best on that.

So, that catches things up. Should be about time to go into my PT session, so I’ll leave it off, here.

Throat Blog — Changing my Sleep Strategy

I have had a heck of a time getting to a normal sleep pattern. For 6 weeks, I basically snatched an hour here or there as I could, as even at night they would wake me up for something every couple of hours. So, my sleep schedule is totally messed up, even 3 weeks later. I have no problem dozing off in the afternoon, but when I go to bed, sleep is just a dream.

To try to battle this, I’ve been trying very hard to avoid those mid-day, mid-afternoon, early-evening, etc. naps. That is really tough, because when I sit down, I shut down. So, I’ve also resorted to taking my pain meds just before I head to bed. That worked a little, sometimes, but only for a couple of hours. Plus, I’m not really in enough pain to need pain meds…pain isn’t what is keeping me awake. Add to that, even taking one pain pill a day has started to cause some other digestive issues which are entirely the opposite of the issues I had nearly gotten used to.

So, yesterday I decided to try to turn my strategy upside-down and treat it as I would on one of my many trips to Asia. Back in 2003, before my first trip, I got a scrip for Provigil, a drug used to prevent sleepiness that has no other side effect for me. It is not like an amphetamine that amps you up. It just keeps you from going into that state where you are involuntarily nodding off. I’ve even taken one, then gone to bed and slept fine just a couple of hours later (each pill has about a 4 hour effictive time). After over 15 years, that scrip of 30 pills had finally dwindled down to a single pill, which I took as soon as I got home, yesterday, after a drive home where I battled falling asleep at the wheel most of the trip.

I did nod off for about 15 minutes, but the TV was on, and I roused back up. And managed to stay up and active all evening. Then, when I went to bed, I fell asleep within minutes and slept most of the way through the night. Not a perfect night’s sleep, but the best I’ve had in nearly 3 months.

I’m hoping this single dose will have helped enough to reset my clock so I can sleep un-aided tonight. If not, I’ll request a new scrip (back in 2003 I had to pay completely out of pocket at $10 per dose…maybe insurance will cover it this time). The side effects are certainly less than the narcotics, and if it works I’d pay out of pocket again to get my days “right side up.”

Other than that, working, driving the new car around on the weekend, and trying to stay out of trouble. Mostly.