Happy: A Quest for Life After Death

Monday, August 31, 2009

The Gift of Summer

I hate to be the one to break it to you, but summer's pretty much over here in Boston. The late afternoons are crisp, the nights are cool, and the school supply shopping is done (thanks Demetra!). Now all that's left to do is to sharpen 48 brand-new No. 2 pencils. (Good thing school doesn't start in Arlington until September 10.)

This spring, I spent my emotional energy preparing to spend my summer watching Mat's decline. We planned a low-energy trip to the Cape -- although I put our chance of having to cancel at 50 percent. A more ambitious vacation involving an exhausting plane flight was out of the question. Other than that, we would stay home and take what we were given.

We were given an unexpected gift.

In early summer, we learned that Mat's chemo, 5FU, had reduced the size of his tumors. The smaller tumor mass soon made him feel better -- a lot better. Mat was able to cut back on pain meds, digest food even without the "help" of the drug that also caused convulsions, and cut back on Ritalin. I haven't been to the pharmacy in weeks.

Even better, Mat has been himself. If you saw him this spring and again this summer, you know what I mean. He cracked jokes, went to the pool with the kids (sometimes daily), went to Red Sox games, went to the beach, and obsessively fidgeted with his iPod touch (a birthday present). (Mat even went roller-blading with us one hot Saturday afternoon, but we were a bit presumptuous there. What a disaster.)

By mid-July, we felt so confident about Mat's health that we planned a week-long trip to San Diego for late August (thanks Brandon and Amanda!). We went to the beach, Legoland, the famous San Diego Zoo, Legoland, caught up with friends we've seen only rarely in the last 10 years, went to Legoland, spent hours at the pool with cousins, and went to Legoland. Mat's favorite part about the trip was getting to skip a chemo treatment. (I haven't asked him, but I'm sure his least favorite part was the woman on the plane next to him (not me!) who reapplied her smelly perfume halfway through the six-hour flight.

Mat is slightly overdue for another MRI, which I'm sure will be scheduled when he goes to MGH for chemo on Wednesday. I, for one, am happy for the delay. I've spent my emotional energy this summer just ... enjoying summer. It feels like another round of MRI results will truly signal the end of this summer, and of this gift.

Saturday, August 01, 2009

Sleeping Beauty

Mat is a champion sleeper. Ever since I've known him, he's been able to sleep any time, any place. Having cancer has introduced a bit of insomnia (anxiety is not all that sleep-inducing), but generally has made him tired. So he sleeps a lot. Here's a typical schedule: arise with the early birds at 10 a.m., nap from about 3-6 p.m., retire at 11 p.m. Roughly 14 hours a day.

A couple of weeks ago, he topped even that. Sunday night, he dropped off around 11 p.m. as usual, and then woke up the next day at 3 p.m. All 14 hours in one stretch. And then he was still tired. Mat dragged himself around for a couple of hours and went to bed early. Monday night was about the same.

We were both pretty worried about it. This kind of fatigue could mean bigger tumors in the liver, making for poorer liver function. We entertained ourselves with this and several other possible (and impossible, I'm sure) scenarios until Wednesday.

During a long conversation between Mat and his palliative care doctor on Wednesday, it came out that Mat has been treating his right shoulder, which is a bit sore ever since the port was implanted, with a heating pad. The patch on his arm that delivers his pain medicine through his skin was on the same arm. The dose is regulated by body temperature, so Mat is very careful not to sit in the sun too long, or he could OD. It didn't, however, occur to us that the heating pad would do the same thing.

So basically Mat overdosed on narcotics and we're lucky he didn't quit breathing.

In more positive news, the effects of the Reglan (convulsions, jumpiness, etc.) are mostly gone.

Since recovering from the pain patch incident and the side effects of Reglan, Mat has been feeling better than he has for a long time. He felt well enough this week that he took the subway to his office by himself to catch up with friends from work, who threw him a surprise party. And not just any party -- a pie party. And not just any pie party -- a Petsi pie party. And he brought some home. Life really is good.