Went out to dinner Saturday night with close friends and Mara and had a great time, but coughed all the way through the meal. They mostly pretended not to notice. When I was done eating, I slipped on the portable oxygen nasal cannula, but it didn't really stop the cough. Maybe the fact it was 15 degrees out had something to do with it?!
But it was a big step for me: first time out in public with what Hamilton calls my "baby bird" hair. No one fell over, so I'm getting pretty comfortable with super, super short hair and big earrings. Even the wait staff, that I've known for years, were very nice about it.
One funny thing: a country club member whom I know just to say hi to stopped by the table to say hello to everyone. He even said hi to Tony by name, looked at me, and never said a word. Don't know if he simply didn't know what to say or he didn't recognize me.
Anyway, Saturday night was a turning point. It was the first night I slept with oxygen. Surprisingly, the nasal cannula is very easy to use, not irritating, not even aware it is there. But I am hooked up pretty much all the time now. Just makes catching my breath after I move around (walk, get dressed, shower, go from room to room) much easier. I've got a 50' chord on it, so I can roam the whole upstairs at will. Luckily, the house design works well. Master bedroom, bathroom, my office, living room, dining room & kitchen are all one floor. Family room and other bedrooms downstairs. I just don't go there anymore. Not worth the effort of climbing back up the stairs. I can still manage the 10 steps from the front door, if I have oxygen on, go very slowly, and sit down as soon as I reach the top. (I give you these details to try to provide a picture of what the disease progression is all about, not to provide a running commentary on lung cancer care but because it obviously frames everything else.) Given how I felt Sunday, we never made it to the Lady Blacksmith Mombazo concert. Chris, Gwen and Garrett went, and brought me home a DVD of an earlier performance to watch.
But I lived to see the New Orleans Saint win a Super Bowl!!!! Who Dat? We Dat!! Very, very exciting.
In the evening, as I tire, I have started taking an Oxycodone to help suppress the cough. Mostly works. I still, though, have no pain beyond what a simple heating pad can handle, so there's still some good news.
But I felt a little like back to my having trouble getting my "sorry ass" out of bed.
Then I realized that when I hit a set-back, it takes me a while (hours, a few days) to find a new equilibrium, to figure out how I can keep doing at least some of what I want under the changed conditions. But rejiggering takes energy, takes a toll. It's tiring.
Sunday, Chris gave me a liter of saline, and while I don't feel the difference, the family said how much better I looked.
Monday, the wonderful hospice medical director came and did an incredibly thorough history, physical, and assessment, spending 75 minutes here. It was more thorough than I'd had since this all started. He tweaked some meds, suggested Ritalin for a little energy boost after hearing my frustration with fatigue, and some possible meds to help with coughing/breathing.
So fingers crossed it helps.
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