My parents got the news and didn’t say anything for about a week. Then they didn’t tell me for days. And I held off on saying anything about it here for a couple of days. But for those of you who’ve been following the story of my brother over the last few years, this is it. We’re told he’s got “weeks, maybe months” to live.
Not that long ago things seemed to be going really well, at least in the world we’ve gotten used to living in. He spent the fall and winter applying to colleges and got into 10 out of the 11 places he applied to. He loved the University of Florida, where a lot of chordoma research is being done. He and my mom played their hand with UF very strongly and he got a full ride and then some. He was nervous about the challenges involved in going to school and his own problems with eating and drinking and speaking, but still, it seemed plausible he could go. I’m sure med school is hard but I was really hoping he’d get to experience the freedom of being at college. And if he spent all his time partying instead of studying I don’t think anyone would’ve really blamed him. He graduated high school on time and skipped graduation to go to sleepaway camp again.
He turned 18 in late July and he had a great day. His camp won a soccer tournament - I don’t know if he played, but if not, he was cheering for his friends - and they went crazy. I am sure they partied even harder than usual that night. And then two days later everything started to fall apart. He called my parents and said the right side of his face was tingling and he wanted to come home. A day or two later that side of his face became paralyzed. A few weeks ago he sat for yet another MRI, and there’s another tumor in his skull. It’s big and has grown very fast. It was not there, or not visible at least, four months ago. It’s enmeshed in his brain and it’s inoperable. Radiation is no good and the odds any drug would help are slim. But he’s tired of all of that and I don’t blame him. I’d go to bat for him on that but I don’t think I need to.
He sleeps a lot now. He’s almost unable to walk because of nerve and muscle weakness and trouble with his balance. He has the hiccups a lot, of all the annoying things. They have a few canes around the house for him. I was at the house yesterday and he collapsed while my mom was walking him to the bathroom. I had to help hold him up and get a chair under him. He’s lost a lot of weight because he’s not eating much, and he was so bony. He’s not talking very much. I blabbed with him about tennis and my trip to Mexico with my girlfriend. There’s a lot I want to say to him but it didn’t feel like the time. I should have other chances.
They should have arranged for hospice care a week or two ago. If they had, it would’ve prevented our trip yesterday and saved him some annoyance and discomfort. But the hospice agency should start helping in a day or two. I doubt we’ll be in a hospital again. Not with him, at least. Which isn’t so bad. We all hate them.
I’m very shaken up. On Monday my mother told me he might have six months. When I got back to my place at night I just stared at the TV and the walls until around 4 a.m. I went out to see them last night and yesterday my dad explained that her estimation was far off. I guess she told me how much time she was hoping he has, or how much she feels she needs to say goodbye. But it’s not going to be anything close to that. This month or next month is probably it, I guess.
He took it very well, I’m told. He went in for the tests about three weeks ago and my dad went by himself to get the results. My dad tells me Dr. Sen was crying. We’ve had a lot of doctors throughout this and he’s been the best. He’s been amazing throughout and we’re lucky to have had him. I’m not sure why it affects me so much but I was glad to hear he cares. And then my dad went home, told my mom, and they said nothing about it to my brother for at least a week. That’s much too long, but they just weren’t ready. Finally they did go to tell him and my dad said they had bad news.
“I’m dying, aren’t I?” he asked. Not that he didn’t know. If you’d been through what he’s been through, you’d know you’re dying. And if you look at him you’d know he’s dying. He is. He’s 18. And we knew this whole time he probably didn’t have long but throughout this whole ordeal he never caught a break. I hoped he’d have more time than this. I wanted him to get at least a year of college even if there was no point to it. I wanted him to have a few years and be my best man, even if we were getting married too soon just so he could be there for it. (We’re not going to do that - there’s no point in getting married right now at his death bed.) I wanted him to get that tattoo he was thinking about. I wanted to take him to the Open again. We have a lot of good memories there. I wanted him to see more shows. I was thinking last night that the Allman Brothers will come back to the city in March and he’s not going to be there, and I just lost it.
I’ve been dreading this for so long and trying to push through it and I’m still so stunned. This whole thing has been so horrible for him and now we’re looking at what it’ll be like to go on, and that’s horrible too. I’m no good at work right now but I can’t go there and sit around the house every day for weeks, so here I am, I guess. Here we all are. My uncle is coming in this weekend for a last visit. I think my brother will tell his friends in a few days. I don’t know if a lot of people will visit. If they do it seems like an ordeal and if they don’t it seems like he’s sneaking out, but whatever is comfortable for him, I guess. I hope these last few weeks aren’t too uncomfortable. It’s such a meager thing to hope for that it’s a little embarrassing. The other night I was tempted to pick a fight with one of those evangelists in the Times Square subway station but I didn’t. I’m sure they’ll be there if I change my mind.
