Guv and Teddy: Moving toward the end is not always so bad

As I write this, Teddy Kennedy is under- going brain surgery at Duke University. He is having the same surgery that my father had, for the same deadly kind of brain tumor. He even has it in the same place--on the left side.

Glioblastoma multiforme. Fast-growing and deadly. Guv lived for about a year and a half.

It was actually a very good year and a half. He could read, and walk the five miles of the Lakewalk, and rake leaves, and celebrate two Christmases. His outlook on life changed; he became mellow and appreciative instead of short-tempered.

I remember sitting out on the deck one spring day, having lunch with him and my mother--grilled cheese sandwiches and apples. Guv stopped and looked around and said, with fervor, "My God, it is a beautiful day!" And it was.

I hope Ted Kennedy does as well, or better. News reports say that after the surgery, Kennedy will have chemo and radiation. So did Guv.

Guv's first chemo was little dissolvable disks that they put right inside his brain. They had the skull open anyway, for the tumor removal, and they just dropped in the disks while they were there. This was in October 2002.

The tumor returned about nine months later, and he had a second surgery, in July 2003. By that Thanksgiving, it was pretty clear to all of us that the tumor had come back. Stubborn damn things, those glios.

That time, he was given Temodar--the same chemo that I read Kennedy will have. I don't think it ever did Guv any good, and it made him quite sick. But he took it pretty late in his disease. Maybe taking it sooner would have made a difference.

Seeing these constant updates on Kennedy's surgery, all day long, makes me think a lot about Guv, and I find myself reliving his last two years. They were not all bad; not by a long stretch. I dug out an email I sent out to my family in early December 2003. Guv died about six weeks later.

Wednesday

hey--

i've been in duluth since about noon or so on sunday.

heidi and tim installed a banister on saturday. tommy and holly bought it. it's gorgeous and trish keeps exclaiming that she can't understand how they got along for so long without one.

it really helps guv get up and down the stairs under his own power and with some dignity. he holds on with both hands. he no longer has to crawl.

iny and bill were here until yesterday. it was a wonderful visit and guv was really happy they came. they were great--they brought chocolates, and fruit, and nuts, and good cheer and lots of stories. iny and bill and i took guv on the lakewalk on monday and he was able to walk (holding onto iny on one side, and me on the other) all the way to the famous Family Bench. bill pushed the wheelchair that heidi provided, just in case, but guv didn't need it.

guv is in really good spirits. he's talking (sometimes, such as last night, extremely lucidly; other times he gets frustrated because he forgets words) and laughing and pushes himself to be as active as he can. on monday he not only walked on the lakewalk but went up and down the stairs several times.

yesterday he felt pretty weak and he didn't want to brave the stairs, so instead he walked around and around the main floor. he goes slowly and carefully, almost at a shuffle, but he still goes.

he started on a chemotherapy drug on monday night. it's called temodar, and it has some short-term benefit to some brain tumors.

he takes 3 pills every evening for five days. the first night, monday, the pills made him woozy and violently ill. he was sick all night. trish wanted to stop the chemo after that but guv wanted to give it a go.

so he insisted on taking the second dose last night. he had a better night--he didn't throw up, though he felt pretty queasy and went to bed early without his ice cream. but the pills make him feel kind of dopey and confused.

he has three more nights of chemo, and then that will be all.

he's in really good spirits, though he says a few times a day that he doesn't want to die. he has a little collection of portable tape players and radios, and he keeps them spread out on the living room table. he sits on the couch and tries them out, one by one, several times a day, just to make sure he still remembers how to turn them on and off.

his memory for things like that is disappearing-- sometimes he puts the headset on to listen to music and he gets one earpiece over one ear, and the other earpiece over his eye or his cheek and he doesn't quite understand why it's wrong.

he has trouble with his right hand, which will sometimes grasp things and refuse to let go--he had to pry a spoon out of his right fingers with his left hand last night at dinner. and his right foot sometimes points in odd directions, making his balance shaky.

but show him a picture of aunt barbara and leon standing in front of the house on dewey avenue in 1934, and he remembers everything about it. (except every now and then the word "dewey" escapes him. he has trouble with proper nouns.)

tommy has been emailing him old photos from st. joe, and guv has really been enjoying them.

he can't do email, but he asks several times a day if there are any messages, so keep sending them. he eats chocolates at a tremendous clip, so keep sending them. he listens to music--i've given him a bunch of Chieftans CDs and some old joan baez, and holly sent julie christie and james galway on the flute and the 1812 overture, and he sits on the couch and closes his eyes
and listens.

having company perks him up. trish commented last night that since folks have been here for the last few days he's a lot more lucid and active. (right now he's singing "but daddy, you've been on my mind.")

when it's just the two of them, he seems to fail a little bit. so i'm glad that tommy is coming up this weekend. verne called yesterday.

it's cold here and tremendously windy, with window-rattling wind, but my plan is to go home this afternoon, assuming that carol molnau allowed the roads to be plowed.

laurie

ps guv is awake. very cheerful. he's talking to trish, saying, "boy, i slept well last night. didn't you?" and trish laughed. guv was up at 1, 2, 4 and 7 to use the bathroom. he doesn't remember that, so he thinks he's well-rested. but she's pretty damn tired.

And this is a note the surgeon sent me, at about the same time:

As you may realize, Leo is now starting to show signs of deterioration in his mental capacity and his physical strength. The tumor appears now to be spreading very quickly. These tumors (glioblastoma multiforme) tend to grow and expand as spiders’ webs through the brain. We have been very aggressive with his care over the years. He has long outlived the natural history of the disease but now it appears that he will be going downhill.

My suggestion is that we keep him on high dose decadron. Unfortunately, I do not believe that surgery or further aggressive measures will benefit him.

Be supportive and understanding with him and his situation. I think he knows that the end is near and he is afraid.

That last paragraph gets me every single time.

I look at the wire photos of Ted Kennedy, waving bravely from the door of the hospital, and I see Guv, doggedly walking the Lakewalk, refusing to use his wheelchair; or sitting on the couch trying to remember how to put on a headphone so he can listen to music.

And even though all of it is sad, it is also OK.

It is OK to fight this cancer, even though this cancer will eventually win.

It is OK to quit fighting, at some point.

It is OK to be afraid.