A Day in the Life

I want to document this -- a typical weekday routine for the last several weeks -- and do it now, since it's likely to change soon. Thank goodness!

The day typically starts around 4:00 AM. I usually need to get up and visit the bathroom around then anyway and while I'm up, I'll open all the windows around the house. The cool, delicious air of the late night/early morning pours in and drops to the floor (being cooler, it's also heavier than the air that's been in the house overnight). Once all the windows are open, there's a natural air flow that purges the entire house -- from the first floor windows, up the stairs, then out the second floor windows. Standing at the top of the stairs, I can feel the breeze that this convectional pressure sets up. It's a blessing from the world to our house and its residents.

With any luck, I can get back to bed and get another hour or two of sleep. I've almost always been up several times during the night, whch means that sleep has come in one- or two-hour parcels for the last month or so.

But I should be awake and moving again by 5:30 or 6:00 AM to get ready for the first feeding via the PEG tube. An early start is important, as it sets the tempo for the entire day.

The food tube feeding happens in 2.5-hour intervals: a half hour for the actual feeding, then two hours for digestion and letting the body prepare for the next feeding. The six cans a day that the doctors recommend times 2.5 hours per can means that the feeding routine encompasses 15 hours of the day. So there's not a lot of room for missing a beat. If we start pressing the schedule later in the day because we're falling behind, a serious case of indigestion is sure to follow.

So we try to make sure I've ingested two cans by 8:30 AM, when we leave the house for radiation treatment. This is pushing the timing a bit and usually results in a mild case of indigestion.

When not actually "feeding" before we leave for radiation, I will be posting something on the blog, clearing the mucus from my mouth (again and again), and trying to calm the pain in my tongue.

Talking has been getting more difficult over the last two or three weeks. The radiation has caused some swelling on the left side of my face, which, in addition to the tongue pain, makes talking more and more of a chore. At this point, I try to communicate with Deb -- and the rest of the world -- using hand gestures and grunting.

The office for the radiation therapy is a pleasant enough space, with a very good coffee machine, open containers of cookies and pretzels and a jigsaw puzzle for folks to work on while waiting their turn for radiation -- or waiting for a loved one who is undergoing treatment at that time. (I can't eat cookies at this point, so I always ask Deb to eat a cookie for me. We stand by the cookie table and deliberate carefully as to which is the right cookie du jour.)

The actual radiation treatment takes only 15 minutes or so, but we often chat with one of the nurses about how the treatment is going. There is a feeling of genuine competence and compassion that permeates the office, which helps offset the negative feelings about the inevitable damage that the treatments inflict on my tongue, my throat and my my skin -- which is currently the color of a well-cooked lobster. And the skin has just started to crack and peel...

Occasionally, there are other doctor visits as well, and we can usually schedule them for shortly after the radiation treatment.

Back home, I will try to tidy up some pile of stuff, or pay bills, or do e-mails, or sit on the porch and read until it's time for the next feeding. Unfortunately, I'm not allowed to lie down for at least 30 minutes after a feeding, so if I want to take a nap, I have to time it pretty carefully. And, if the weather cooperates, Deb and I may take a walk.

The day seems to go by fairly quickly. There are surgical sponges to be replaced at the spot where the food tube penetrates my tummy, and this often involves minor clean-up work around the site.

I try to get in at least one nap -- and am usually successful.

Getting ready for bed takes a couple of hours, as my compression stocking needs a wash, sponges need replacing again, and the food tube needs to be secured carefully with a lanyard around my neck. The temperature and flow of the shower water have to be carefully adjusted so as not to impinge too hard or hot on the food tube site. And I feel the need to hold onto a railing or rest against the side of the shower stall as I'm soaping up and rinsing off. I don't feel terribly dizzy or anything, but a slip and fall in the shower could be a serious issue at this point...

Deb refuses to fix herself dinner until after I'm safely ensconced in bed. So I do everything I can to be horizontal by 9:30 PM.

Geez, reading over this, it sounds like the high point of the day was opening the windows in the early morning. And maybe that's true... Except, of course, for walks with Deb. Those moments are precious.

But other than these wonderful moments, the days are tedious and dull and punctuated with pain (tongue and throat) and annoying routine (clearing the mucus). But they go by. And they're nearly done. And the next chapter is at hand...