I still don’t have words to convey my condolences for you and your family. Cherish these last moments, as I know you are.
{{{Marley}}}
I’m so sorry to hear about your brother Marley… I’m very close to my younger brother, and I can only imagine how awful it would be if we were in your situation. Makes me realize how much I do love him- I think I’ll give him a call.
You and your family are in my thoughts and prayers, and thanks for reminding me how much my brother means to me. It’s really easy to take family for granted.
<<Marley>>
Sorry but the crappy vids and sound…sometimes music is all we have.
Please know you, your family and most especially your brother are in my thoughts and supplications…
Ok…I admit, I AM a deadhead…
Peace and much love,
daniel
Not much has changed lately but it’s not like we expected it to. Tyler has completed a lot of artwork in the last few days: his three collages have been framed and he finished decorating a desk with paint and mosaic tiles. He’s now working on a vase. He’s also got a copy of PhotoShop, although I think he’ll need someone to explain how a lot of the tools work. It might not be very user friendly for him since he’s working with just his left hand.
I was out there again over the weekend. I came Saturday evening with a dozen cupcakes from Magnolia Bakery, and by the time I left 20 hours later, I think two were left. Mom spends a lot of her time cooking for him and he chooses most of his own meals, and between that and the food people are giving them, they’re running out of room. In the last few days she made apple pie, apple crisp, and apple cake. So bringing desserts was a little ridiculous, but I’m not sure he’d ever eaten anything from Magnolia before. Some things you need to experience. Mom says she preferred the cupcakes they got in Boston two years ago - from a place called Lulu’s - but I don’t think Lulu’s is going to deliver for a side-by-side taste test.
Not all is good on the food front, though. We sat down to have pancakes Sunday and he was having a lot of trouble with them. He snapped at me a little bit and left the room for a minute, and then came back to say “I want to die. All I can do is choke.” My mom tried to sugar coat it a little and say it wasn’t always that bad (which is true only in a very relative sense - while some meals are worse than others, he always coughs up a bunch of what he eats), but he wasn’t hearing any of it. He said eating was the last thing he enjoyed and now he can’t do that either. Then he sat down, they cut the pancakes into smaller pieces, and he ate some more. What else can you do? It was very sad to see. I couldn’t think anything to say, so I said nothing. I wasn’t going to contradict the truth and I am trying not to pretend that he’s not miserable in general even if there are good moments.
Which there are. I thought this summed things up pretty well: Saturday night I found Tyler and my parents in the living room, and he was saying that he’d like to be placed in “a moderately priced receptacle” but not a coffee can. They’d watched The Big Lebowski a day or two before - he’s seen it loads of times and so have I - so I asked if he’d reconsider the coffee can idea, and I could go out to the Pacific Ocean and dump the ashes on our dad. He said he’d prefer not to do that and wound up doing a parody Folgers jingle. I think it went “the best part of waking up is ashes in your cup.” Or maybe it was the worst part. Either way.
After that sad brunch, my girlfriend came out and we hung out and watched some Law & Order SVU together. I can’t get over how bad this show is, and unfortunately, it’s on more often than any of the watchable Laws & Order. We saw the end of an episode where instead of arresting a killer, the cops sit her down and make her and her family watch video footage that shows her killing someone. Then they let her walk out of the interrogation room unmolested, from which she proceeds to walk to an unguarded roof. She perches on the ledge while the cops make no effort to get her, and then finally she grabs her innocent boyfriend and drags him of the edge with her. The cops don’t move a muscle the entire time. The next episode was about the kidnapping of an infant. Tyler’s first theory was that the baby was under his crib the entire time and nobody bothered to look. Later the cops busted a guy who they thought was carrying the baby, but actually just had a big satchel full of cocaine. So for the next half hour or so, we developed a theory that the baby was running a huge cocaine smuggling ring and riffed on that until we got bored. Everyone went outside and threw tennis balls for the dogs until it was time for us to go back to the city.
I might be back Friday. I did spend some time with our other brother, and as usual he wasn’t much for talking about how he feels. He acknowledge the same basic stuff we’re all dealing with - this is depressing, and the thought of going on afterward is a whole different kind of depressing. He mentioned that sometimes he’ll put on some dour music, listen until he cries, and then feel better. I said I wasn’t sure that was a good idea but you really can’t tell him anything. And I tried to suggest that he take some time to do things for himself beyond his regular activities. Spontaneous things, nice things for himself. He doesn’t do much beyond school, work, his internship, and going to the city for various red functions. I suppose that’s a lot of stuff right there, so maybe he doesn’t have the time.
Now I’m going to be thinking up names for the baby cocaine ring all day. The Right Start Cartel? 
Thanks for sharing, Marley. I’m glad you are still having some good times with your brother.
I got an image of that talking baby from the Etrade commercials making deals and ordering hits over a cell phone.
This baby was a drug dealer but not that much of a douchebag.
Is there a particular reason you don’t think it’s a good idea? Or just because it’s not what works for you? (No snark intended.) Seems to me that he’s got a decent amount to cry about; crying can often make you feel better; and sometimes it’s easier to “jump start” the process by crying about something else instead of trying to deal head-on with the enormity of whatever you happen to be facing (and dying before you even get to start college is pretty fucking big).
This is the third brother, not Marley or Tyler, if that makes a difference.
:smack: My brain skipped right past “other brother.” Basic point still stands, though.
Wait, you are Marley and Tylers other brother? The one he was just talking about?
You may be right. To me it sounds like he’s making himself feel worse, but it could work differently for him. He’s going to do what he wants regardless since he’s not one to take advice for any reason. It sounds like he and I are in essentially the same place mentally, the difference being that I’m not living in that house and can get a little more of a break from what’s going on.
No, she is definitely not my brother. She was clarifying that I was referring to the middle brother, not Tyler.
Be aware that you have helped in ways that you can never understand.
Thanks for the update, Marley. I was wondering how things were going.
It sounds to me like your other brother has created a cathartic ritual for himself. Odd how such a variety of activities can feel like they help.
I’m glad that you’re able to have time laughing together.
Still thinking a lot about the whole family.
I wanted to come out of lurk to say that my thoughts are with you and your family. I watched my mom die for 18 months, and even though we all knew her time was short, when it finally happened I was still shocked for some reason. Even though I had all that time with her when i knew she was sick, there are still things I wish I had told her. It sucks, and I’m sorry you are all going through it. Your brother sounds like a great kid. Terribly unfair to die at 18.
I had a very hard conversation with my mother this afternoon. Tyler’s ability to eat and keep food down is declining, and apparently it’s even worse than it was over the weekend, when I was starting to wonder if he might choke before the tumor got him. She told me today that he wants a gastric tube put in. Even though it’s a sad notion, it’s not a bad idea. He coughs up a lot of food and eating is really dangerous for him at this point. She was worried that he would be upset by all the food in the house, and he might - but everybody needs to eat. We’ll tell our friends not to bring so much food, and maybe my mom and Tyler won’t bake as much themselves. He could still try to eat here and there if he wanted to, just using the gastric tube as another option. He loves the pleasure of eating. When they had that fire in their hotel in Boston three years ago, the only thing he saved was a sandwich. I’m glad I brought those cupcakes last week.
Unfortunately it goes beyond that. It sounds like he’s starting to have some more pronounced mental problems. He was already having some trouble concentrating, which hindered their reading together, and now my mom tells me sometimes he says things that don’t make sense. She couldn’t give real specifics, but the implication was that he spaces out once in a while. I’m scared by the idea that’s going to happen more often, and that when we’re with him, he won’t necessarily be there.
He’s admitted to her that he’s scared of dying, not that anybody needed to be told. He’s decided he wants to be cremated and have his ashes scattered at camp. They spoke to the camp director and they’re talking about an award or a memorial soccer tournament on his birthday. All very nice ideas. It’s a pain in the ass to drive up to that camp, but it’s just beautiful up there. Visiting weekend is always right around his birthday and I loved going up there and looking at the stars. I had a feeling they’d hold some kind of event for him up there next summer regardless of what his wishes were.
Next week Tyler and my parents are going to go to North Carolina again, back to the home of a friend who lives on the Outer Banks. They spent some time recuperating there after Tyler’s radiation therapy and decided to make one more trip, figuring it should be possible to get him there without too much trouble and it’s not like it’ll get easier if they wait. I’ll join them with our other brother on Friday and stay over the weekend. Details about the trip keep getting sprung on me at the last minute but I think it sounds great and I’m looking forward to it. Suffice to say a bunch of friends are making it possible for my family to do this.
If you’d asked me on October 1st if I thought he’d still be here at the end of the month, I would have said no. Sometimes it’s bizarre the way your brain copes with these types of things. His condition seems bad, but if you’re there for a few hours, you let go of the perspective and it doesn’t seem so bad. And from there you think he’s not in any immediate danger even though he’s running out of time. When I saw him last week, his throat problems were definitely worse. And by the end of the visit I was thinking, ‘Sure, he’s worse than last week, but not that much. Maybe this Thanksgiving thing is going to happen after all - wouldn’t that be great?’ And that’s pretty much where my state of mind was until that conversation this afternoon. Right now, who knows.
While the problems between my mom and her sister have not been solved in any particular way, and who knows if they ever will be, she did visit again. Her husband came this time. Tyler had said previously that he didn’t want to see him. I’m glad he changed his mind about that. His other cousin (son of the just-mentioned aunt) will probably visit soon. He was going to fly in over Columbus Day break, and then the planning crapped out. My aunt had said he’d come during his Thanksgiving break, but my mom pulled her aside and told her she’d better speed that up because he probably doesn’t have that long.
You can imagine how upset my mom was during most of this call. Listening to your teenage son talk about his fear of dying and then go on making plans for scattering his ashes must annihilate your spirit. For a long time the gastric tube represented things he was being deprived of, and to go back to that, wise as it is, is a reminder of what he’s losing. It’s not just that he’s dying, it’s that so many of the elements of life are being taken away from him. I’m going out there Friday and it’s a struggle sometimes to sit there with him and try to be there instead of drifting off into thinking about these things. It can be a struggle to focus on him as a person without thinking about the tumor and about what’s coming, both out of fear for him and concern for us. You do the best you can.
I’ve not been commenting, much.
I have been reading and celebrating the triumphs you’ve shared, and grieving the loss that you’re all suffering.
In the end, all I can offer you is the knowledge of how touched this stranger is by Tyler’s struggle, and your efforts to support him. I don’t often know what to say in the face of something like this, but I’m still here, I still care, and I hope that may offer some comfort.
I have a friend who was always a crybaby… when they were little, sometimes her 1-year-older brother would also start crying during one of her crying jags “but Luis, why are you now crying too?” “B-b-because she iiiiiiiiis! waaaaaah”; I remember when we were about 10, going out into the garden and she suddenly burst into tears, and when she finally calmed down enough, she said it was because “all these flowers are so pretty and they’ll die, and and and waaaaaaaah”. She’s now 40; I haven’t seen her cry in over 30 years but I understand there are times she goes to her mother’s, has a good cry, puts her makeup back on and comes out ready to face the world again.
I’ve never been a crybaby, but sometimes when I’m down I invent a very sad story, get a couple sniffles out and that gets rid of the blues.
If it works for him, I don’t think there’s nothing wrong with it. He’s not making himself sad on purpose, he’s sad and uses the music to help him pile up the sadness so he can break through to its other side.
Well said. I have nothing else to offer, but I will listen…
Some friends of mine have a baby with chromosome-22 deletion that has manifested as, among other things, some pretty bad nerve damage in her throat and terrible reflux. As a result, for a lot of her first year she was getting most of her nutrition through a J-tube (or something like that). They’re really excited now because she’s starting to taste things on her own, 'cause oral aversion can be a big problem with 22 kids. I guess what I’m getting at here is–does your brother need to *swallow *the food to enjoy it? Just being able to *taste *some of it, even if he’s not swallowing it, might be better than completely giving up the food he enjoys so much.