Monday, September 23, 2013

Finding a Rhythm

Another week, a new plateau. I guess progress does happen after all!

I got tired of feeling so weak and decided to really focus on getting in sufficient calories: for the past week I've made sure to get in at least 2000 calories per day. Both the nutrition and the focus have contributed to an improvement in my mood. It's nice to not feel quite so fatigued. I've even done a few chores!

I've also been eating at least a couple of "meals" per day. That's in quotes because it's usually a single dish, whereas a real meal usually has a side or two. I'm getting about 1/3 to 1/2 of my calories by mouth now. I eat french toast, poached eggs, toast, soup. I'll try just about anything these days, but with a lot of things one bite is enough because of taste.

The focus on calories is having a positive effect on my weight. My normal weight is about 175 pounds. I got down to 150 a couple of weeks ago. Now I'm back up to 155.

Wonderful Wife's birthday was last week; I was very excited to try some chocolate cake mashed up with ice cream (to make it wet) but I was sorely disappointed that it didn't taste good. Chocolate in general is one flavor that is quite off.

As I've mentioned before, eating is a bit time consuming because I have to wash every bite down with water. Also, things taste normal when I first put them in my mouth but the taste changes quickly to one that is less pleasant. That seems like it will make a complete transition to eating by mouth slow. At the rate I eat now, I'd be eating all day!

One factor in that taste issue might be the damned never-ending sinus infection. I'm about half way through my fifth course of antibiotics now to try to finally kill the damned thing. The latest antibiotic is Cefdinir (previous rounds were Azythromycin, Bactrim, Clarithromycin and Levoquin). My immune system is also recovering so perhaps I can finally be rid of the thing. It has been the bane of my existence.

Two weeks ago the sinus infection suddenly started making life worse.

The post-nasal drip hits that "bottom rung" spot in my throat that, when it gets mucous on it, triggers coughing fits. I can limit the fits now with sips of water and relaxation but not until I've had several dry coughs that make my throat very sore. That never fails to happen a short while after I lie in bed, just as I'm about to fall asleep.

Two weeks ago the sinus infection also started draining in the middle of the night, waking me up every hour or two needing to get rid of the mucous so I can breathe. It's not just a drip but a stream and it lasts for several hours from midnight or 1:00 AM until 5:00 or 6:00. No position, such as sleeping upright, helps.

I've come to dread night time because I know I'm going to have two coughing fits while trying to get to sleep and then have a sleep-interrupted night.

My hope is that if I finally get rid of the sinus infection both the "bottom rung" issue and the drainage will disappear and I will finally start getting better sleep. That would do wonders for my mood.

Most days are above average lately. Today is an especially good one. However, there are still bad days mixed in. Yesterday, after a terrible night's sleep, I woke up angry and was seriously low all day long. But last night I got a better-then-average night's sleep and today I'm in a great mood.

Last week I was experiencing dizziness whenever I stood up from sitting. We call it a "head rush". When I was at the ENT last Wednesday I mentioned it to him and he had his nurse perform an "orthostatic blood pressure test". She measured my blood pressure and pulse lying down, then sitting, then standing. When I stood up my blood pressure plunged and my pulse shot up. I failed, meaning I was dehydrated ("hypovolemic": low blood volume). Anemia can also contribute.

It's a challenge to try to address the dehydration by just drinking more. I am drinking regularly through my mouth these days, but I can't just drink a whole glass of water like I normally would (swallowing that many times in a row is still painful). Also, a lot of the nutrition I'm getting is still in liquid form, either feeding through my tube or things like Instant Breakfast or soup. The point is I often feel full of liquid and I'm not inclined to add more.

On Saturday I got 1.5 liters of IV hydration at Dana Farber. Since our family support came to an end a week ago, we took The Progreny with us. Progeny the Younger is fascinated with things medical and she watched closely as the nurse placed the IV and also later when she removed it.

I've found that if I time it carefully I can get in liquids between meals. The past few days I've been getting in a couple of half-liter bottles of Gatorade (via my feeding tube) per day and the dizziness is much improved.

So, an inventory of outstanding issues:

  • The sinus infection. I may be seeing some improvement from the latest antibiotic.
  • Poor sleep. Definitely caused by the sinus infection.
  • The painful dry cough caused by the "bottom rung". Perhaps related to the sinus infection (hopefully)
  • Still taking four doses of laxative every day while waiting for bowel function to return to normal.
  • Weird sense of taste - things taste fine when I first put them in my mouth but turn a little south soon thereafter. Could also be related to sinus infection.
  • Not enough, and not wet enough, saliva.

I see Doctor Chemo again in two days and get updated blood work. We'll see of my immune system is continuing to rebuild.

We're having spectacular weather at the moment. It was in the 70s all last week and will be this week, too. Wonderful Wife and I have been making a point to get out for a long walk every morning after The Progeny go to school. That's also contributing to an improvement in my mood. We've been exploring all different parts of the charming small city we live in. Today we ventured farther afield to the Grand Wenham Canal.


No comments:

Post a Comment