Monday, September 16, 2013

The Long Road

I'm sorry it's been so long since I've posted. I think about it every day but just haven't had the energy.

I continue to learn, over and over, just how slow this recovery is going to be. A lot of time it feels like I'm just treading water. That said, I did have some significant progress in the past week.

In my last post I mentioned that we met with Doctor Rad on the 6th and she told me that the mucous can be a problem off and on for several months. That day I decided I needed to stop waiting for perfect conditions before I tried eating.

The thrush improved a few days later and I started trying to eat more. I've eaten one meal and a snack or two every day since. I started with cereals that I would let get soggy. I've also tried sliced bananas in milk (or in combination with cereal). Later this week I progressed to poached eggs on well-buttered toast. I've also had chicken noodle soup and yogurt. Today I had a whole bowl of lentil soup. I also tried ice cream - it was alright.

Eating is a chore. The food tastes okay, especially at first, but my saliva is thick so whatever food I put in my mouth turns pasty fairly quickly. After chewing I have to rinse each bite down with a swig of water. It takes a long time. It's hard to figure out things to eat that are appetizing and have the right characteristics: mostly that it is very wet.

There is not much joy in eating at the moment. My tastes buds and my saliva production are just two more things that will improve slowly over many months. One or both of them might never fully recover.

I really want to eat! I want to get rid of the feeding tube. My favorite sleeping position is on my stomach and I haven't been able to sleep that way for months. I can't wait to have that ability back. I'm probably a few weeks away from tube removal. Obviously, I need to be getting all of my nutritional needs through my mouth for that to happen.

So eating more is kind of big news. The other news is that I've been completely off the opioid pain medications for several days now. My mucositis is mostly healed. That tongue sore is still there but much less painful now, and slowly healing. That's also contributing to more eating.

I've been getting off lots of medications, and in fact the only ones I'm on regularly now are the Flucanozole to keep the thrush at bay, and the laxatives to counter the opioid-induced constipation. Now that I'm off the opioids, the constipation should begin to improve and I should be able to get off of the laxatives. I see the gastroenterologist later this week and we can evaluate.

One random observation: the skin on my neck and cheeks is baby soft. It was all slowly destroyed by the radiation and is now all new skin. Wonderful Wife likes the feel of it. So do I! But I don't recommend radiation treatment as a way to get softer skin. My beard is still not growing back - just a little peach fuzz.

I still have the threat of gagging coughing attacks from mucous hanging in my throat, although I have learned how to suppress them with relaxation and sips of water. The suppressed fits still cause me to break out in a sweat and take several minutes to calm. And they piss me off.

Our old friend the sinus infection is still with me. It got knocked down significantly by the fourth round of antibiotics that ended a week and a half ago, but of course is still not completely resolved. It is my biggest complaint at the moment. Most nights, around midnight or 1:00 AM, it starts draining into my mouth and throat. It's not a drip, it's a stream. And it lasts the rest of the night, making it hard to fall asleep and waking me every hour or so. It's seriously interrupting my sleep, which makes me angry because I need that sleep for recovery. Doctor Chemo did not want to start me on another antibiotic right away (as of the 11th) but we called today to tell her we really need to do something about it. Another reason she wanted to try to avoid another course of antibiotics is...

On the 11th I had new blood tests and my white counts are recovering slightly. My neutrophils (a type of white blood cell that fights infection) were even back in the low end of the normal range, although my overall white cell counts are still below normal range (but close, and improving). My red blood cell counts and hemoglobin are also below normal range, meaning I'm anemic.

The low counts of both types of blood cells contribute to the constant fatigue. My bone marrow was hammered by the chemotherapy and is struggling to produce new blood cells for me.

I'll have new blood tests next week on the 25th. Meanwhile I'm trying to get as much iron and other nutrients as I can.

In general I am still quite fatigued. I'm not sure what was going on a few weeks ago when I had three days in a row of feeling energetic. I haven't felt that way since. I get dizzy when I stand up. If I do something too strenuous during the day or don't rest enough, I feel very poorly by bedtime. Almost too uncomfortable to fall asleep.

I'm also physically weak. My legs, which used to be strong and firm from years of cycling, look skinny and flabby. I climb stairs slowly. My arms feel weak. It's going to take a lot of work to regain that strength, although once I can actually get back on my bike and begin that process I will enjoy it.

I don't have the concentration or motivation to accomplish anything during the day (thus the lack of blog posts). One would think that all this down time would be great for completing big projects but I just don't have any energy. That's mentally tough for me because I'm usually a pretty busy guy.

This whole recovery is mentally tough for me. It's excruciatingly slow. I did visit the Dana Farber psychiatrist and I have no signs of clinical depression, but I do feel depressed in the colloquial meaning of the word - quite often. Perhaps discouraged is a better word. I am so tired of being tired.

To counter that I am trying to get out of the house more. I need to rinse my mouth and spit much less often now - I can even make it all the way through a brief visit to a store, for example. That makes it easier to get out in public.

This past weekend we went to my favorite place, the Ipswich River Audubon Sanctuary in Topsfield, and walked our usual route to the Rockery and through the swamp to the Old Stone Bridge. It made me cry to be there again. It didn't recharge me as much as I thought it might, but it was still nice to be there.

Yesterday was one of the last expected warm weekend days of the season so we went to the beach in the afternoon. I just sat still in a beach chair and watched The Progeny play in the sand and water. It felt good to sit in the sun and the breeze and watch the boats.

When I get discouraged with the pace, Wonderful Wife reminds me to look at where I am relative to a month ago. That helps a little. I have made good progress since then and life is much better.

But still such a long way to go.


  1. Do you think a netipot would help clean out your sinuses? Distilled water only and clean it super good of course.

    1. I do use a neti pot. But that only rinses out the nasal cavity. This drainage is coming from the maxillofacial sinus (big one behind your cheekbone) and drains further down below where a neti pot reaches. So the neti pot rinses out a bit of it, but five minutes later it's the same.