I’ve thought about it a few times but haven’t asked. My reasoning was that it’s very difficult for him to make himself heard. He really can’t project his voice because of all the nerve damage. If he wants to make himself heard, he presses his finger in his throat to move his vocal cords closer together and we can usually understand him then. But it’s an effort and I’m not sure he would be audible. Maybe he’ll want to write something down later on.
Ah. I guess that puts the kibosh on that in a sense. Still, after following along and reading what you have been writing, I can only hope that you go forward with something meaningful that is dedicated to his life. Not to imply of course that what you have done for him has been any less than that.
I suppose what I am saying is that if it were my brother, I’d want to memorialize him in some way. But maybe its just too tiring trying to conjure up something like that amidst what you’re going through currently.
I still think you’re a good egg, Marley. Maybe I’m overstating (and I don’t know why I’m even saying what I am to you, I don’t know you and you don’t know me, but your story is touching in a way I cannot describe) but whatever you do, I’m sure you’ll make the choice that is right for all parties involved.
Seriously though, the way you are recounting this ordeal is a very touching, real, sad, engaging story of a life lived. There’s just something more to it than posting on an internet messageboard. I’m glad that you have shared that. It makes me more conscious of my own trivial bitches and problems in my life. Its bringing home to me how unimportant many of my day to day problems are.
You’re being a rock for him in a way nobody else in your family seems to be capable of. I admire that and you’ve so eloquently written about it that it just seemed a natural fit for this to become well known in a book or something, given the severity and rarity of the type of cancer your brother is suffering from.
I hope you don’t think I’m pressuring you in any way or that I’m looking at this from any other angle than just the painful yet weirdly beautiful series of events surrounding Tyler’s life. Sorry if I come off that way.
I could have just offered condolences and let that be that, but I am so strangely compelled by this that I can’t help but chime in. I don’t even know why but I think its because I am recognizing true love when I see it and its altogether an amazing thing, as sad as the inevitable outcome will end up being.
That’s great! Shit, I think I remember watching that game. Had no idea I was watching a Doper!
This is the part that really hits me. I remember when I was his age, I couldn’t wait to get out of the house, go to college and be on my own. I hated my whole senior year of high school, I was just waiting for it to be over. I’m staggered by the monumental unfairness of these modest desires being just outside of your brother’s reach. He’s come so close. Fuck, life can suck so bad sometimes. 
I hate to ask an impertinent question but…has he ever had sexual relations? Is he upset he’s missed out on that, if the answer is no? I’m just saying, if it was me, I think that’d be something I’d want before departing, if at all possible. I’ll apologize if this is too personal for me to be asking!
Marley just wanted to offer my sympathy and support here. I’ve thought a lot about your brother, and you too. I’ve experienced death of someone close to me, more than once, and it’s hard to be the survivor. I’m so glad you’re able to spend time with him.
Well, an honorary Doper. Message boards have never been his thing. I heard the story of that game but I didn’t see the video until last week. It was a lot funnier than I thought it would be.
It is. It’s a bitter thing that he got into college and was a month away from enrolling. It was exciting to think about. I know my father didn’t think it was going to happen in the first place and he was right, but the possibility helped him, I think.
Things might be a little better today. He’s still nauseated and his right side still hurts. They’re seeing if they can get him a massage, and if perhaps the amount of food he’s been eating made him sick or if he just felt bad because he had some of his medications on an empty stomach today. Nobody’s sure what the problem is. It’s typical but disconcerting. On the positive side I spoke to one of my younger cousins and he’ll be getting in touch. He had been nervous about it (or in denial, he said). And he’ll use email instead of the phone, which should make everybody’s life more pleasant.
elbows, I’ve wondered about that but never asked. I figure it’s not my business and there’s not much good that can come out of the answer.
Marley -
The next time you see your brother, if you want. tell him that just reading about him made my life a little bit better. Maybe I can’t help him, but he has helped me.
You are all in my prayers.
Regards,
Shodan
Marley,
I’m really sorry. I have been away from the boards for a while, and didn’t know about your brother until this thread.
You are very supportive and I’m sure your brother really appreciates that. I really like how you help make things smooth, and how you handle things with your mother.
These are difficult times, but you have many people thinking about your brother, family and you.
Thank you, Shodan and TokyoPlayer. And Ellen Cherry; I did see what you posted. Things are still going well and I’m worried his time is very short. I’m not losing sleep exactly, but I’m dragging. I was thining last night that it seemed stupid to dread something that was inevitable and that I can’t do anything about until I realized that’s exactly what people usually dread. So maybe that’s not my problem. 
But when I imagine what he might be going through, I’m scared and I’m scared that he’s scared. I don’t want him to be afraid and sad now, but I don’t know what else he would be.
He’s still not doing well. He’s still throwing up at night and sleeping more to make up for the exhaustion. They increased the doses on most of his medications yesterday. That could be making him sick or it could just be general problems. If they’re raising the doses that obviously isn’t a good sign anyway. While my mother leans toward the dosage explanation, my impulse is that maybe this is it and he only has a few days left. I have no idea. I’m planning to visit again Sunday, but if things are the way I am concerned they are, I have to trust my parents to let me know ahead of time if he has some kind of downturn. That’s a little hard to do. For that matter it’s hard to conceive of all of this at one time. He might be dying, but right now he’s eating lunch. And I expect to talk to him soon. I haven’t heard much from him lately and that’s making things a lot harder.
You must have a very understanding employer, which is cool.
They’ve been good about this, which I appreciate. I’m just about out of vacation time, but I still have some personal days and if I used sick days I don’t think anyone would complain. I’m holding off on using any bereavement days (excuse me, “compassionate leave”), but they’ve indicated they can be generous with those, too.
Just saying that he’s in my thoughts, Marley. A book would be great. I’m not emotional, but this thread had me choking back tears.
I’ve been following these threads since I got active here again, and just noticed this new one when I was heading out the door yesterday.
This is shitty, Marley. Really, really shitty. I hope your brother, you, and your family get as much enjoyment as you possibly can out of the time he has left.
You got me with these 2 lines Marley.
Just a note to say that I’m thinking about you and your brother.
Has your family discussed clinical trials as an option? These stories made me think of your brother, especially the second one, even though it’s a different type of brain cancer.
We did a little bit in the abstract, and we might have done that again if he’d been interested in trying more treatment. (A quick search of the website does not show much research into chemotherapy for chordomas anyway.) The few studies that have been done were taken into account when his chemotherapy regimen was developed two years ago.
That stuff may be the future for a lot of types of cancer treatment. I’m not sure it will ever be an option for chordoma but I know there’s a lot of research going on in that area. And can I just say - “iron man?” Give me a break.
I did spend a day with my family this weekend, and I was worried about what I was going to find. As it turned out things were not as bad as I feared and we had a lot of laughs, particularly Sunday night. On Monday, I watched him work on his big collage and we listening to a lot of music. The second half of that collage is about half done and I think they have enough pictures to complete it. The blanket is also starting to come together; they probably have enough squares to finish it already. Maybe he can use it while watching football next weekend.
There are some signs his health is deteriorating a bit. He’s not reading or watching as much TV because he is finding it harder to focus. I think he’s sleeping more and not talking as much. They’re trying to keep the various other side effects under control as much as they can. I feel better than I did a few days ago but the enormity of this is hard to avoid.
Thanks for the update, Marley. I’ve been thinking of all of you a lot and looking for updates every time I stop by here. Hugs.
As bittersweet as all this is Marley, its very compelling and moving. Here’s to wishing you, Tyler and the rest of your family the best utilization of all remaining time you have together…