Saturday, September 7, 2013

Back in the Slow Lane

Well, it turns out maybe those four or five really good days I had last week were not the norm. At least not yet. Since Tuesday of this week, when I last wrote, I've been riding a few rows further back in the bus.

For one thing, the mucous came back. On a couple of days it's been especially voluminous and/or thick - sometimes at the same time. We met with Doctor Rad yesterday and she told me that some patients complain of mucous for up to three months after treatment. I guess I was only hearing the optimistic end of things earlier when I thought I heard that it was usually better after a month. This week the mucous has been accompanied by a very unpleasant taste, too.

Thursday marked four weeks since the last day of treatment.

I was probably too optimistic about when I might return to work, too, due to those anomalous good days. Most days this week I have felt pretty exhausted all day. Yesterday just three hours at Dana Farber (albeit with a lot of waiting in uncomfortable waiting room chairs) completely wiped me out. I was laid out on the sofa from 1:30 PM, when we got home, until bed time.

It's so hard to predict how I'm going to feel when. We have a camping trip next weekend that was planned six months ago - we definitely won't be going on that (or at least I won't be going). Some friends long ago invited us to their cottage on the cape the following weekend and that's looking pretty iffy, too. Both would require sleeping in our camper van. It's comfortable enough when one is feeling normal, but it could make for a very unpleasant night (and trip) if I'm having some kind of issue. Not to mention that tube feeding takes time and it's important to try to stick to a schedule to make sure I get enough calories. It's much easier to maintain that routine at home. We'll see.

You may remember my excitement a couple of weeks go when I took a few bites of food. That was quickly derailed by yet another bout of thrush (due to my low white blood cell counts) and also the recently returned mucous and bad taste.

I have tried a few foods since. The other night Wonderful Wife made my mother's chili recipe and it looked and smelled so good I had to try some. I even chewed a couple of beans and a small piece of ground beef. It tasted reasonably good and the texture was OK. The mechanical motion of chewing aggravated the mucositis sore on the side of my tongue, though. I'm not really going to be able to chew until that is completely gone.

The mucositis has been getting a lot better. I take my opioid painkiller in two forms: a patch plus liquid I take through my tube if the patch isn't enough. Until Wednesday I was consistently doing both but over Thursday and Friday I didn't take any of the liquid and my tongue felt like it was finally healing. Yesterday evening I had a fair bit of pain and took the liquid, but today it is lessened again.

Hard to believe that a little 1 inch by 1/4 inch patch of inflammation on my tongue can be so painful that it's causing me to take narcotic painkillers. At least the new laxative regimen I started a couple of weeks ago has alleviated the opioid induced constipation.

I'm starting to really want to eat for an additional reason: tube feeding is boring and slow. I crave tasting a variety of foods again, and I also look forward to snacking.

The other side effect I have to deal with is my hearing. It is significantly suppressed. Hearing loss, usually temporary but sometimes permanent, is a side effect of the chemotherapy I received. Mine could also be partially due to the persistent sinus infections I have had throughout this experience.

Regardless of the cause, the hearing loss makes me feel disconnected from the world. It's very difficult to track a conversation in a room with noise or with multiple conversations going on. I can't hear some sounds at all (for example, electronic beeps), but others feel amplified - like the sound of a metal pan hitting the hard countertop or glasses clinking. When someone is cleaning up the kitchen or loading or unloading the dishwasher it feels like that's all I can hear.

The current sinus infection (number four if you're keeping track - or maybe they have all been the same one waxing and waning) is threatening to resolve. I just finished a two-week course of Levoquin on Thursday. That's the fourth course of antibiotics. I still have some evidence of infection (yellow blobs in the mucous) but they are fewer. Also, the antibiotic continues to work for a few days after completion of the course. I'll keep a much closer eye on it this time and deal with it at the first sign that it is waxing again. The inability to resolve it is also related to my compromised immune system.

Doctor Rad was a little concerned about depression. It is apparently pretty common for people in this phase of "survivorship" to experience depression or even temporary Post-Traumatic Stress Disorder (PTSD). Dana Farber has psychiatrists on staff just for that reason. I made an appointment to see one next week. I don't feel dangerously depressed, but I do have to admit that I am a little depressed by the slow and uneven pace of recovery. In a "two steps forward one step back" world I don't deal so well with the "one step back" parts. Patience is not one of my strongest virtues.

So I'm just ticking slowly along at the moment. I take a lot of naps.


  1. I'm sitting in a lecture on Baye's theorem and one of his example is cancer screenings. It's way less abstract now.

    1. Are you comparing me to something posterior?