Happy: A Quest for Life After Death

Wednesday, April 29, 2009

Salvation in a Sausage

Sometimes everything is black.

There is nothing good about life, I rage in my head (and occasionally out of my head) as I mechanically go about my sometimes overwhelming list of chores. I felt that way a couple of weeks ago while I was making dinner.

Then I took a bite. Italian sausage with peppers and onions sauteed in a splash of balsamic vinegar (Mat's inspiration) on a lightly toasted split-top roll with ketchup and mustard. Even better than at Fenway.

The spicy-sweet snap reminds me that there are good things about life, especially when those Italian sausages were delivered to my doorstep in a white cooler from Omaha Steaks, one of the dozens of examples of untiring friends who take pains to brighten our days. Suddenly things are not quite so black.

Sometimes there is a little bit of salvation in a sausage.

(And for the record, I feel the same way about those dark chocolate almonds.)

Sunday, April 26, 2009

Power Port

Mat took the first step on Thursday toward a new bionic body with a Power Port. The titanium device was implanted in his chest and will be used to receive infusions of chemo and/or fluids, and can also be used to draw blood. I'm sure Mat would be cheering at the thought of NO MORE NEEDLE STICKS except that his shoulder and upper chest are quite sore.

He'll start his new chemo regimen, 5-FU (no, I didn't just say a dollar word), on Wednesday. He'll be hooked up to an infuser in the hospital, take it home with him to wear for the next 30 hours or so, and come back on Friday to have it unhooked. Friday is also when a nurse will teach me how to unhook Mat from the infuser at home, so that every chemo treatment doesn't require two trips to MGH.

Shouldn't I have a degree in nursing for this?

Disappointingly, the Power Port is actually not bionic, and no further steps toward a bionic body are planned. Over the summer, however, we seriously discussed the merits of Mat becoming a vampire (brought on by the Twilight series). I'm all for it, as long as Mat can remember not to eat our boys.

Sunday, April 12, 2009

DNR

While Mat was in the hospital, one of the residents came in to clarify his wishes about treatment.

"Are you a Do Not Resuscitate?" he said.

I was horrified. In the abstract, you might think a nice cardiac event could be an easy way out of a terminal illness. I might have thought that myself, before Mat's prognosis became, well, terminal. That was when Mat's cancer returned for a second time, in late August 2007.

Now, almost 20 months later, there have been a lot of really bad days, but there have been more -- not a lot more, but more -- days that were mostly good. And what if mostly good days only came along once a week? Once every two weeks? I suspect I still wouldn't want Mat to be a "Do Not Resuscitate." (I'm not completely sure how Mat feels about the once-every-two-weeks scenario, but I'm pretty sure we're on the same page about the other one.)

One of Mat's doctors told him in January that she couldn't tell him how much longer he had to live, but that it was months, not years. And furthermore, some of those months would be low quality. Even knowing that, would I want Mat's life to end months early because of a random glitch that resulted from a straightforward surgery to correct a bowel obstruction? We have two kids, ages 4 and almost 8. A few more months is a long, long time if you're four years old.

I've thought about living wills and advance directives for end-of-life care before. Mat and I both have a living will, written about fours years BC (before cancer). But I would guess that most people who think they know how they want to be taken care of near the end of their lives are wrong. I don't know if people can fully understand the implications of their directions until they've been there, or at least pretty close to there.

I've been pretty close to there, and now I know.

Saturday, April 11, 2009

Mat's home

Mat came home from the hospital on Wednesday afternoon, and he's much happier now that the pain in his stomach is gone. He must be on some kind of frequent-customer plan, because he was lucky enough to get a room in the Phillips House section of MGH again, with a great view of the Charles River and Cambridge. And, if you have good eyesight, even of our neighborhood.

Mat's recovery seems to be going well -- it's not as major a surgery as his previous two, and he's got even better pain meds now than before. (Don't believe in miracles? Let me introduce you to "the patch.") He does have yet another nice row of staples, closing up the six-inch incision, but those will come out soon.

It all still feels a bit surreal, but I've decided surreal is good. Sometimes a little distance between me and reality is just what I need.

In someone else's life, an emergency surgery like this might be the defining event of the year, or at least the highlight of the Christmas letter. In the life of the Burnett family, it feels more like a week-long inconvenience that is soon to be displaced by another crisis. Welcome to our world.

Friday, April 03, 2009

What just happened?

I'm the first to admit that life is not predictable. Plan a vacation for three months from now? Forget it. Make plans for next weekend? Maybe, but with a 50 percent chance of cancelling. This morning? We couldn't even plan our afternoon.

Mat woke up early this morning with a sharp pain in his stomach. Sound familiar? It should -- this is what started this whole cancer odyssey. He waited until 7 a.m., then we chucked the kids in the car so I could take him to see his doctor, who took one look at him and sent him to the infusion unit for IV pain meds and set him up for a 4 p.m. CT scan. (If anyone is keeping track, and I'm sure the health insurance company is, this is the fourth CT scan in about two months.)

He spent a full day being pretty miserable despite pain meds, and seemed to feel worse and worse as the day went on.

Finally, by 6 p.m. or so, Mat was checked into a hospital room for an overnight stay, and the CT scan results were back. A bowel obstruction in Mat's small intestine.

That's when my head started to spin. About 6:30 p.m. Dr. Tenabe, the same surgeon who performed Mat's liver resection two and a half years ago, came to talk about the possibility of surgery. By 8 p.m. Mat was being wheeled to the OR, and by 9:30 surgery was underway. Huh? You shot who in the what now? (Free "stupid cancer dot com" button to anyone who can identify that quote!)

Joe and Ellen came to keep me company in the family waiting room while I waited for news during the surgery, and we were just settling in with some snacks when Dr. Tenabe came in at 10:30 to report that the surgery was over and it went well. Some of Mat's small intestine had become adhered to scar tissue from a previous surgery, and then looped over itself, cutting off the blood supply and causing pain. Lots and lots of pain. Dr. Tenabe detached the small intestine, untangled it, and that was it.

Well, that's not quite it. Mat's got about a week-long stay in the hospital to look forward to, and then several weeks of recovering from surgery after that.

In other news, we found out Wednesday that there are no clinical trial options for Mat right now, so Mat was planning to start a new chemo drug, 5-FU, next Wednesday. Somehow I doubt he'll make that appointment.

See what happens when you try to plan ahead?