Monday, July 22, 2013


Life is improved.

I had a very good day most of the day yesterday. I even went on a couple of shopping errands with Wonderful Wife.

It was very exciting. We bought a new garbage can.

Today hasn't been quite as good but still one of my better days lately.

Last Friday I received two liters of IV fluids at Dana Farber to try to boost hydration and help loosen the mucous. It worked very quickly - about halfway through the first liter I started being able to get the mucous up and out without painful throat gymnastics. It was good timing, because those throat gymnastics were starting to produce a little blood.

I was compelled to do those throat gymnastics, even though before extra hydration they were painful. I'd have the constant feeling of sheets of phlegm draping my throat. I think it probably didn't really go that far, but it felt like those curtains of phlegm extended all the way down my esophagus. And sometimes I would get that tickle in my throat that forces one to cough.

I was a little mystified why IV fluids would seem to work so much better than fluids put into my stomach via my feeding tube. That's still a bit of a mystery, but starting Saturday we really pumped up the fluids I'm putting in. At least 3-4 liters a day.

I also started hanging a liter of fluid on the IV stand (I used an IV stand to hang bags of fluid and food so my hands are free) next to the bed, and when I wake up at 3:00 or 4:00 AM (I wake up many times per night) I hook up that water with a slow drip and go back to sleep. I also hang another liter around 6:00 or 7:00 AM and go back to sleep or lie in bed. That removes that dry period in the morning and also helps to avoid the build-up of thickened mucous I have to deal with when I get up. Before this strategy, I would have a couple of hours of discomfort after getting up while I cleared that backlog.

So those measures have helped me achieve the same easier expectoration of mucous that the IV fluids produced. That's a huge relief. Even the gloppier clumps that are in my throat can be "blown" out without hard "hawking". The level of throat violence is substantially reduced.

On Friday afternoon I suddenly realized, "Hey, there are a lot of opaque yellow chunky globs coming out. That's what a sinus infection looks like." If you remember, I had a sinus infection on June 24 and took a course of antibiotics for it. But we got so distracted by the other issues we were dealing with that we never followed up - specifically we never reminded my doctors to check my throat for pus to see if the infection had been cleared.

On Saturday we went to my primary physician's office (because it's closer) to have someone take a look. Doctor G said it was inconclusive. She couldn't see obvious pus, but the yellow mucous I described seemed pretty confirmatory that I in fact still have a sinus infection. It has certainly added to the mucous misery.

We had called Doctor Chemo first on Saturday morning. She was very concerned. She thought that if I had an obvious infection I probably needed to get to a hospital and have IV antibiotics. The reason is that my white cell counts are just about to reach nadir from the last round of chemo (the immune system is most compromised about 10-14 days after the chemo infusion).

But Doctor G and Doctor Chemo consulted and decided IV antibiotics were not needed. Doctor G wrote a prescription for Clarithromycin in liquid form that I can put in my tube. I've been on that since Saturday evening. Let's hope it works. It's a 14 day course.

At first I was angry that my Dana Farber doctors hadn't followed up closely after I told them about the sinus infection on June 24th. But in my conversation with Doctor G I realized that my sinus infections are weird. I have been getting sinus infections after colds for decades. But the only symptom I ever have is the thick, colored mucous. I don't get sinus headaches, which are the main complaint of most people with sinusitis. So it's understandable that since I wasn't complaining of symptoms my Dana Farber doctors assumed it was resolved. In retrospect, I should have been reminding them to assess it regularly.

The other issue we're trying to troubleshoot is headaches. I get them kind of suddenly, and they hurt pretty badly for a few hours. Yesterday, for example, I felt great all day but then had a painful headache from about 7:00-10:00 PM. Tylenol helps but does not get rid of it.

Our theory of the moment is that the headaches are due to not taking Adavan on schedule. Today we're trying to be more careful about getting that in every four hours (as directed) to see if we can avoid the headache.

Today has been pretty decent. We had to get Progeny the Elder to a camp on the other side of Boston by 8:30, meaning we had to leave home at 7:30 and deal with rush hour traffic. Last night I didn't think I'd be able to do that, but this morning I woke up at 6:00 and got in fluids and food and felt pretty good so I went along. It was better logistically for me to go because the camp location is not far from Dana Farber and I had a 10:00 AM appointment there. Anyway, it went well. We got home at 1:00 PM and while I haven't felt as good as yesterday it's still a pretty good day.

I value these good days. Mark them off the calendar. I'm starting to let myself envision the end. I have radiation all this week, chemo and radiation next week, then just a few days of radiation the week after that and I'm done.

I can do it.

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