I don't know how to write this.
I keep sitting down, staring at the computer, and getting up again. Trying to think of some light-hearted twist to this. But there is not a damn thing funny about this.
Mat probably has a few weeks to live.
Now my stomach is starting to hurt and my heart is pounding and my shoulders are inching up toward my ears. I want to get up again, but I will finish this.
It should be no surprise to anyone who has read these posts that Mat has less time to live rather than more. Mat is on hospice. But I really, really believed that Mat would hang on for a year. Or more. People do.
But he has been getting steadily worse since starting hospice two months ago, needing ever-increasing doses of pain medication to be comfortable, having more and more difficulty leaving his bed, and becoming increasingly tired.
Despite these struggles, Mat seems more clear-minded and purposeful than I have seen him in a long time. He is calling friends, talking with the kids, and tightly packing his schedule with visitors. (He is not, however, checking email, because his pain medication has made his vision blurry and he can't read email.)
Where does that leave me?
Well, for one, still holding out a sliver of hope that all of this activity will look really silly when Mat is still here 10 years from now. At the same time, planning a funeral.
If you'll excuse me, I think I need to go throw up.
Saturday, January 01, 2011
It was not a happy day when Mat, Dr. Dave, and I decided that there were no more cancer treatments worth trying. Last year alone Mat tried three different chemotherapy regimens, three rounds of radiation, had two hospital stays, and two bone fractures.
There were one or two chemo options to try, but we were looking at Phase I clinical trials with no track record outside a petri dish.
Not very attractive.
So Mat switched to hospice, where the focus is on comfort rather than cure. Hospice is a service that helps people who have six months or less to live to spend their remaining time at home rather than in a hospital. Mat has a primary hospice nurse, Klara, who we like and who seems competent. She visits at least once a week, orders all of Mat's prescriptions, and coordinates other care that he needs. My only complaint about her is that she's tall, blonde, stylish, and thin. Ugh.
We also have a chaplain and a social worker, and Mat's prescriptions are delivered to our door (I do NOT miss the twice-weekly trips to the pharmacy). We still meet with Dr. Dave every other week, which is comforting.
Although Mat has only been on hospice for a few weeks, we are already pros. We know, for example, that although most of them are competent, some of the hospice nurses do not have the sense they were born with. Leo, for example, sat like a bump on a log in a chair in Mat's room, saying nothing for over half an hour. Eventually he did ask some questions, but they were all directed at me, as though Mat were 5 and I were his mother. "When did he last take his pain medication?" and "What has Mat's activity level been today?"
Ginny talks to us both like we are 5. "This pump," she said today, gesturing to the pump that delivers Mat's pain meds intravenously, "has a LOCK-out feature (can you say LOCK-out feature?). It is set at level ONE. I need to change it to level TWO."
Mat owes his sanity to Michelle, who spent the night at our house, periodically talking on the phone to Mat's palliative care doctor and furiously re-programming Mat's pump, helping to end a four-day-long pain crisis.
Apparently she arrived at our house from the tropics, however, because she set the thermostat -- there's only one in the whole house -- so high that the temperature on the second floor reached 82 degrees. I went downstairs from our blissfully unheated attic to fetch Michelle at 4:30 a.m. for an intervention. As I walked past the kids' bedroom, they were both awake, flopped over their beds with their shirts off.
"Mom, we're SO HOT. We can't sleep. Can't you turn down the heat?"
The whole four-day episode was a bit of a nightmare, but we're glad Mat didn't have to spend that time in the hospital, even if we were a little toasty overnight.
Hospice is hard to get used to. No one draws Mat's blood anymore to check levels of liver function, kidney function, or any other kind of function. There are no more scans scheduled.
Some things never change, though. Like the fact that we are the cutest couple in the UNIVERSE. And the fact that we have some of the best friends in the world.