Tuesday, July 2, 2013

Catch Me If You Can

I want this blog to be current, but it's hard to keep up sometimes when family events or not feeling well steal my writing time. At the moment I'm a week behind in real time. So in this blog I'll stick to the narrative and get you caught up.


Tuesday night I was still feeling pretty uncomfortable due to stomach issues, but I took a double dose of Prilosec knowing that should help within 24 hours. I also started taking a 10-day course of the anti-biotic Bactrim for my sinus infection. Sleep was interrupted that night due to stomach acid.


By Wednesday afternoon the prilosec was working and my stomach was much better. I still had a little splash of reflux when I swallowed fluids but that was also improving. And we also discovered that it was important not to let my stomach get empty. If I always kept some food in my stomach I felt pretty good.

Cool. Strategies that work.


Thursday was a good day. I felt normal all day. My radiation appointment was late in the afternoon. Afterward we met with Dr. Rad. I described a sore throat and she said that should not be caused by the radiation yet. She mentioned the risk of thrush (a yeast infection in the mouth) that usually happens later in treatment. Antibiotics make one more susceptible. She looked for it but didn't see much.

She also wrote me a prescription for Ativan (lorazepam) that is used for anxiety and also for nausea. They thought it might "take the edge off" and maybe even help me sleep better. And I can apparently use it under the tongue for rapid nausea relief.

At this point, about 5pm, I was feeling better than I had in week and a half.

While we were at our appointments The Progeny were being cared for by lovely friends Dan and Marie and their similarly-aged and identically-gendered progeny. When Wonderful Wife and I were finished we drove to their house (a few blocks from ours).

It was a pleasant visit until I went to take a bite of watermelon. Suddenly it was painful just to open my mouth wide. It felt like the entire roof of my mouth had been scalded.

Hmm. Setback.

I nibbled at dinner and got in some food. I even ate some greens, which have't been very appetizing lately.

My mouth got worse as the evening wore on. And I get very discouraged and angry. I had had about 8 hours of feeling relatively normal and now yet another problem had cropped up.


We called the Dana Farber nurse on call and she confirmed that what I was feeling was likely thrush. Great.

The next day we picked up pills for that.


Friday was a decent day. Although it reveled yet another side effect: constipation. They had warned us and told us to have supplies on hand, so I started popping Senekot and Colace.

My little pile of pill bottles is getting not so little.

My radiation appointment was at 4:20 on Friday afternoon. I don't remember this in is other cities, but in Boston in the summer Friday afternoon means major exodus. That's for the second wave - lots of people don't go to work at all on Friday much of the summer. So we got to enjoy traffic both directions. Oh well, only one afternoon appointment left and we shift to 11am every day.

When we got home The Burtnetts were having a feeding frenzy and invited us to join. I ate some yummy lentil stew and a Brazilian rice with peas and corn. Some of it actually tasted good.


Saturday I was feeling even better. The senekot kicked in and resolved that particular problem.

We puttered around the house with some cleaning projects. Then we took The Progeny swimming at the nearby free state pool, which had just opened. That will be my last time swimming for a few months due to my feeding tube.


Sunday I also felt great. I tried to get the desk and bills organized (they've been neglected a lot lately). Carol slept. Then we took The Progeny to see "Monsters University." That was fun.

After the movie we went out to dinner. It feels like we haven't done that in ages. It was enjoyable, but the food tasted like crap. See next post.


Monday I felt so good I actually went to the office for a few hours. I had lunch with a couple of coworkers and I also made some progress cleaning out my Inbox. Felt good to be there. Then Wonderful Wife dropped by to fetch me for radiation.


Today we have appointments all day. We started at Dana Farber for IV and blood draw. Then we met with Dr. Chemo and Nurse Holly. We told them the stomach acid problem is resolved. They looked at my blood chemistry and determined that I didn't need infusion of fluids today if I didn't want them.

Now we're waiting in Day Surgery at Brigham and Womens Hospital to have my feeding tube put in. It requires general anesthetic so we'll be here for a while. Hopefully I won't feel as poorly after this than after the biopsy.

So that's where we're at. A rough start to the week and then steady improvement ever since.

I'll let you know soon enough how the feeding tube placement went.

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