I arrived at the house at about 12:30 Friday after a walk through the rain. My mother was getting ready to go out, so I went into Tyler’s room to check out his new stereo setup. We put on Steamin’ with the Miles Davis Quintet. It sounded good but I don’t have the kind of background in jazz that I do with rock and the blues. So I can’t necessarily say why something is good or how it works, but I know when something sounds smooth. He has a very cool sound system in his room now: the computer and the turntable and the surround sound are all hooked up, and he can shake the house to its foundations when he wants to. He’s also doing better physically. I think they switched off the thorazine and are using something else for hiccups because he was suffering a lot of dizziness as a side effect. So now he can stand and walk much more easily and we’re not moving him in that office chair. That was very encouraging to see.
After the Miles Davis record was done - and he’s getting good at putting the needle down, which does not look easy - we went through some of his new music. A few days ago a family friend came over with a flash drive that held about two gigs of Dr. John and a lot of other people. Tyler had never heard Robert Johnson before. I organized some of those songs because the titles hadn’t transferred correctly. Then we started in on the Allman Brother stuff, playing some songs from their New York City run in 2009. That was a few great weeks and was a great Make A Wish choice.
We were listening to another version of Whipping Post when he spoke up. He wasn’t touching his throat, so I had to turn the music off to understand him.
“If it doesn’t work anyway, is it stupid to try?” he asked.
“No, it’s not stupid,” I said. “Nobody’s going to call you stupid or desperate or undignified or anything anyway. First of all because it’s your life, and second, because nobody is going to criticize you after everything you’ve been through. It’s just a question of the best way to get what you want. You figure out how you want to spend your time, what’s the most important thing to you, and what will put you in the best position to do it.”
I decided this probably sounded a little too calculating, so I rephrased until I said it better, but I mostly stuck to that theme. I told him about the drugs I reviewed Wednesday. There were 11 of them. It’s a little hard to think about one child going through six different chemotherapy regimens over four years and almost none of it doing anything. I said his mother felt that the last therapies he was on might have worked if they’d tried them sooner, but I added that I wasn’t sure she was right. I think she’s mostly just hoping, grasping at the idea that there was a solution and they weren’t stumbling around in the dark. All of this crap is random chance, including responses to treatment. At least it is until we learn more about how this cancer works. He met other kids with chordomas in 2008 at the first CF conference, and two of them died in the next few months despite loads of chemotherapy. [[And he’s next… fuck, it hurts to think of him as a name on a list.]]
And I told him something I’ve said here and to a lot of my friends: that the chemotherapy he did in late 2008 to early 2009 was the worst part of this entire ordeal in some ways, and that knowing it apparently did nothing for him, I wish it hadn’t happened. He was miserable that entire time. He was nauseated and sick and weak and bedridden and frail and he was so angry. It was scary to be around that kind of anger. That was when he started smoking a lot more weed. It helped with the nausea but it also just helped him get away from everything a little bit.
And around that time he asked me what I would do it his situation. I’d thought about what I’d say if he asked me that, but it was a tough question to field. But I told him the truth, which is that I thought I wouldn’t do any more treatment. And I tried to be careful about pointing out all the differences between me considering that as a thought exercise and him really making the decision because I wanted to make sure I wasn’t pressuring him. (I guess it’s vain to think that I could pressure him into making one decision or the other here.) The conversation went on and I said that I’d had a really great time with him in the last week listening to music and watching DVDs for hours on end, and that if he did chemotherapy again we might not be able to do that. But we could have different priorities (after all I am partly thinking about how I’ll remember this time, and that’s not an issue for him) and I said that if he wanted to do get as much time as possible that’s also a sensible approach. He said he’d been enjoying our time together, too.
I think around that time our mom came back with the food. Luckily for us she had more errands to run. So we went to the kitchen. I talked about how frustrating it was that we are spending so much time trying to make him comfortable and minimize this problem and that problem instead of talking about college and further into the future. I asked him if he got as frustrated about those things because it was hard for me to tell. He didn’t say very much. Eating and drinking are a major problem for him. One time this weekend he finished a meal and said he felt like he hadn’t even eaten anything because he coughed up almost everything, and it’s painful when the food comes out his nose.
When mom got home we spent a few minutes talking about the logistics of the chemotherapy consultation, which was scheduled for Monday morning, before he told her he wasn’t going to do it. He said all of his goals for his life required him to live to 30 at least, and none of these drugs were going to make that happen, so there was no point. He held firm on that point. She said it might help with his swallowing, for example. I said that could happen but it was also possible the damage had been done. We talked about other things and he started making jokes about death, which I hadn’t heard him do since before his first surgery almost four years ago. On the topic of their horrible looking lawn, he said “There’s more chance of me living than that grass.” He made a few other comments like that. I felt he was trying to reinforce to my mom that he was serious and also be tough about it. He really can be blunt when he wants to.
After lunch we went back to his room and he answered the question I’d asked him. He said he did want the things I’ve been able to do in the last few years that he won’t do - going to college, being independent and living in a place of my own, having a serious relationship with someone amazing - he hadn’t lost sight of all of those things in the middle of the avalanche of depressing shit he’s gone through. He thanked me for advising him and said something about me being the only sane one in the family at this point. I tried to say that if I’m the sane one we’re all in trouble. But I also know he’s not completely wrong in some ways. Our parents are very stressed out and they’ll start fighting with each other at any provocation, and our other brother is very emotionally detached. I’m conscious of the fact that I’ve stepped up lately. I don’t mind it. I do hope it matters.
I told him the same thing I said to mom earlier, that I was sorry he’s going through all this. I told him I loved him, and he said he knew or I wouldn’t be visiting as often as I have been. And I told him that being his brother and his friend has always been one of the best things in my life. He teared up a little, just in his left eye.
“I haven’t cried much,” he said.
“Me either. Just the once. This has been going on so long that if I started crying I don’t know how I’d stop.”
We hugged and said goodbye. That night I had a dream where I was trying to imagine what I would have done if I’d been diagnosed with a terminal illness when I was younger. My parents found a videotape they’d made during a time when we thought I might have some kind of serious sickness. In the video I said I’d be willing to refuse treatment. The boy in the video didn’t look like me. Later the same night I think I had a dream where my mother was diagnosed with a chordoma. And after that I had a dream where I was in a store with big windows looking out on a monstrously huge thunderstorm. It looked a little like this, only much closer to us. A few times, lightning flew in through the windows. It almost hit me once and I tried to stand behind some boxes for cover. I don’t need to be haunted by this stuff while I sleep. This is hard enough.
I was out there again Saturday with about a metric ton of macaroni and cheese from a place downtown. I took him there after a Mets game in 2007 and before our last Allman Brothers show together six months ago. I probably got enough food for 12 people and we’ll all be eating the leftovers for most of this week. He had a few camp friends over and some of them were just leaving when we showed up. Later that night, some family friends came by and with my dad’s help, they installed support bars in the shower. With luck he can use those to stand in the shower and ease himself out of the tub. Blanket squares for the quilt have also started arriving, and some big batches may come soon.
That night, my girlfriend and I went out for a late snack with an old friend of mine. They said a lot of very supportive things that I really appreciated. And in reflecting on it I realized that even in the state he’s in, I’d rather have this sick version of him than have nothing at all. I don’t want to lose him even like this. But there’s nothing I can do about that. And hearing him make a decision that he’s not going to do the chemotherapy drove that home. I knew all the details and the odds of chemo working, but hearing him say no made it that much more concrete. The curtain’s coming down sooner than later. I don’t know if he’ll be around at the end of October. I honestly don’t know.
He really wasn’t in a good mood today, which made things awkward for me. I tried not to get in his way. I watched some football and observed the collaging for a while. He did get a lot done on his new camp piece. The collage is about half done- he’s almost filled up one piece of posterboard (I think it’s 36 by 24) and there’s a second one waiting to be done. My mom would be happy to take a break, but he wants to keep going.
