Two steps forward and one step back – That seems to describe my current state. We met with Dr. Yom at UCSF yesterday. She wasn’t quite as pleased with my current state as Dr. Fong was earlier in the week. The good news: she couldn’t see or feel any tumor at the primary site but her vigorous massaging of my toasted tonsil sure did make my eyes water. Whew! The not as good news: she said the secondary site at the lymph node was still working things out. She is satisfied with the progress there but she’s not ready to give me a clean bill of health yet either. The good side of this is when Dr. Yom does say there’s no sign of cancer it will be with a great deal of credibility.
Wednesday evening my throat pain jumped up suddenly and stayed there long enough that I had Bonnie increase my opiate dosage so I could eat without too much pain. I told Dr. Yom that it was like some one peeled off an old patch of flesh and exposed the new but raw flesh underneath. She thought that may have been exactly what happened. The bad news is that now my constipation should get even worse, I’ll spare you the details on this side effect but it is not trivial. Also the higher dose makes me sleepy so we will be looking to reduce the dose again as soon as we can. No one knows when the throat pain will go away and the guesses are widely spread out (2 weeks – 7 months). Depressing.
Right now cherry jello is one of the highlights of my day. Amazing, but after weeks of eating (drinking) the same thing 5-6 times a day, that cherry jello sure hits the spot. It also represents the promise of other flavors reentering my diet sometime soon. We are making a list of other foods I could try this weekend (pudding, mashed sweet potatoes, applesauce).
The night time phlegm problem continues to worsen. I probably woke up 20 times last night to hack up some really gross ‘loogies’. The only good news is that Bonnie’s count is always less that half so she is sleeping through most of my attempts to clear. This is happening despite sleeping almost sitting up completely. The downsides are lack of sleep, especially REM sleep, and a sore throat from all the effort all night.
On the bright side I haven’t had any vomiting attacks recently so we are going to reduce my anti-emetic med today. That will be nice if it works but reducing the pain killers would be nicer.
An additional note to Monday’s blog – While we were waiting to see Dr. Fong, a blonde lady and her husband walked out and I thought to myself, she looks a lot like Diane F! Diane also had tonsil cancer with lymph node involvement and finished her treatment in late October. Glen knew her and put me in touch with Diane so I had one more person to get coaching and support from. She has a blog with a number of her photos on it so that’s how I recognized her. I ran after them and caught them just before the elevator came. It was really nice to finally meet one of my most significant supporters and to be able to give her a hug and thank her. Thanks again Diane. I’m sure I’ll be calling you again soon.
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