Thanks for the updates, Marley. I’m glad to hear that your mom is coming to terms with this awful thing. It was very thoughtful of you to tell her that you were sorry this was happening to her. Glad you were able to have some time with your other brother, too.
The tattoos are perfect.
Hugs and good thoughts for all of you.
GT
Marley, I’ve thought about your brother and the strength of your family bonds many times. Your words have been personally very valuable to me.
I’m sorry for all of the pain–Tyler’s and everyone’s. Don’t wait long to say what you want to be said.
Even your tats are eloquent.
I’m so very sorry, Marley. I just lost my brother a month ago, and it just doesn’t seem right. Take care and hang in there.
Take care of yourselves – caregivers need an immense amount of emotional strength, and watching someone you love fade away drains you. Make sure your mom and dad eat regularly, and take naps, as well as you and your brother. Prayers are going up for you here.
Marley, there’s nothing I can say except how my heart aches for you and your family. Like An Arky, I lost a brother this summer, too.
My sister came across that *New Yorker *article shortly after my brother died. I’m so glad you found it when you did. The questions it raises are so important.
I spent most of this weekend visiting my family. I might’ve stayed a little too long, but I can see the medications are helping and he is feeling better. The hiccups are mostly under control and he is a little bit more mobile, although he still doesn’t walk more than a few feet at a time. He’s having more problems eating, though. While he has more of an appetite, he coughs up a lot of it. It’s not fun to watch or listen to and I am sure it’s much worse to go through. He keeps a small can with him at all times in case he needs to spit something out. My mother has resorted to her strategy of feeding him whatever he wants. I think that’s a good plan at a time like this; my father isn’t sure. If I do say so myself I made us some very good plates of nachos for football yesterday.
Yesterday he had some more visitors and I saw he’s doing a little bit of collage work to keep himself busy. Mostly he’s cutting up stuff from guitar magazines. He’s also gotten very busy with mix CDs. I asked for one and he made three of them, along with one CD of The Band and one of Animal Liberation Orchestra, who he’d been recommending to me. What I heard sounded like a much more chilled out version of the Allmans. Or at least that was an element of their sound. I’d heard a few Band songs here and there but I was very impressed with what he chose for me. Rags and Bones is one of his favorites and that’s a beautifully written song.
Meanwhile I’m somewhat in the middle of an argument between my mother and her younger sister. They fell out a few years ago over that situation with their nephews. In any case the sister sent me an email saying that they’re thinking about us and about Tyler. I got a very similar email from her husband the next day. I thanked them, gave them some ideas about what they can do, and since they asked, I gave them Tyler’s email and phone number. He told me later that he doesn’t want to talk to them, but that’s his business. I did tell him they wanted to talk to him, and so do their children, who are about his age.
My mother needed something to do with her time, so she’s making a quilt for him. It’s going to be Carolina Panthers-colored. Since speed is important she’s got a sewing circle helping her out and I also volunteered one of my friends. I hope he gets to watch a lot of football in it.
There was at least one other thing I meant to post about. My mother told some people from the Chordoma Foundation about what’s going on, and one of them replied to her over the weekend. She explained that some types of chemotherapy can be considered palliative care rather than treatment (she didn’t say which kinds) because they ease the symptoms of the tumor. I read the email to the end and didn’t say anything. She was obviously looking for my opinion but I didn’t feel comfortable responding. At least from my standpoint, this is complicated. Easing his symptoms could not be a bad thing, but I also think that asking him would threaten his sense that he has our respect and is being allowed to make his own decisions. There’s a certain amount of taking sides here and I’m not comfortable with that. I’m uncomfortable with the idea of siding against him, or of disrespecting his wishes. That’s especially true since I think he’d probably say no if she brings up the idea of treatment again, even if it’s something that qualifies as palliative care. His chemotherapy experience was pretty terrible and I think he has little to no trust in his doctors outside of Dr. Sen.
Maybe you could print the email and leave it laying around so he could read it on his own?
I can’t say I like that idea. I’m tempted to reopen the conversation with my mother, but at the moment I’m not sure how to handle it without giving some kind of endorsement.
I’m so sorry you, your brother and your family are going through this. Wishing you strength.
All very tough. Your serving as advocate for Tyler is a great gift to him, though.
Strength to you all.
I shouldn’t be up this late when I’m planning to go out there by noon, maybe earlier, but I’ve been plotting a mix CD for Tyler and I have one I really like a lot. Here is what’s on the compilations he gave me:
Disc #1
Wang Dang Doodle: Koko Taylor
Key to the Highway: Little Walter
Goin’ Down Slow: Howlin’ Wolf
Struttin’ My Stuff: Elvin Bishop
Jesus Just Left Chicago: The Allman Brothers Band with Billy Gibbons (live 2009)
Something in the Air: Thunderclap Newman
Who’s Been Talking?: Howlin’ Wolf
Howlin’ for My Darlin’: Albert King
We’re Gonna Make It: Little Milton
Double Trouble: Muddy Waters
Got My Mojo Working: Muddy Waters
So Many Roads, So Many Trains: John Hammond
Johnson Machine Gun: Sunnyland Slim
Good Moanin’ Blues: Big Walter Horton
Rollin’ Stone: Muddy Waters
Disc #2
Rainy Day Women No. 12 & 35: Bob Dylan
Jamming: Bob Marley & The Wailers
Rockin’ Pneumonia and the Boogie Woogie Flu: Johnny Rivers
Sing My Way Home: Delaney & Bonnie and Friends
Manoovas: Dr. John and the Lower 911 with Derek Trucks
Music Came: Dr. John and the Lower 911
Dirty World: Traveling Wilburys
Loser: Grateful Dead
King of Pain: The Police
Brainwash: The Band
Feel Good Music: Dr. John
Livin’ on the Open Road: Delaney & Bonnie and Friends
The Wrong Thing to Do: Mudcrutch
I Put a Spell on You: Creedence Clearwater Revival
Cowgirl in the Sand: Neil Young
I Am Yours: Derek and the Dominos
Midnight in Harlem: Derek Trucks & Susan Tedeschi Band
I don’t recognize a few of the songs on the third disc, but it’s got Son House, Buddy Guy, B.B. King, Wilson Pickett, Muddy Waters, Howlin’ Wolf, Derek Trucks, Dr. John, the Traveling Wilburys, and an acoustic Loan Me a Dime by Boz Scaggs and Duane Allman. I don’t think I’d ever heard that version before.
My first disc is a commentary on his second one. I used a bunch of the same artists and in some cases I replaced songs or artists that had something in common with the ones he chose. So it looks like this:
Could You Be Loved?: Bob Marley & The Wailers (12" mix)
Desperadoes Under the Eaves: Warren Zevon
Just Dropped In (To See What Condition My Condition Was In): Kenny Rogers and the First Edition
New Orleans Instrumental No. 1: R.E.M.
Hear My Train a Comin’: Jimi Hendrix (Valleys of Neptune version)
Colossal Head: Los Lobos
People Like Us: Talking Heads
Honey Bee: Tom Petty
Love You To: The Beatles
Alabama: Neil Young
Soul Rebel: The Wailers
Babalu: Desi Arnaz
Little Child Runnin’ Wild: Curtis Mayfield
Cousin Mary: John Coltrane
Biko: Paul Simon
City of Dreams: Talking Heads
And here’s my second, which is more of a compilation of my favorite instrumentals capped by a Wailers medley that might be my favorite piece of music.
In Memory of Elizabeth Reed (Allman Brothers, live version from 2000)
Samba Pa Ti (Santana)
Pali Gap (Hendrix)
Tax Free (Hendrix)
Kind of Bird (Allmans, live version from 2010)
Get Up, Stand Up>No More Trouble>War>No More Trouble>Get Up, Stand Up (Bob Marley & The Wailers, live)
That’s some great music there, Marley. Now I’m gonna have to pull out a blues CD to fall asleep to. 
One of the hardest things about this ordeal is the shifts in emotion as you look at the situation from different perspectives or try to lose sight of some of the bad stuff and find yourself unable to do so. I spent most of the day Saturday with my family and we had a great time. Tyler listened to the mix CDs I made him and he liked the instrumental one in particular. Then we made some nachos and watched two Mystery Science Theater movies (Jack Frost and Beast of Yucca Flats). It’s something we might have done on some weekend anyway, especially before I moved out. It just means more now. So I try to enjoy the meaning of the moment, but sometimes it’s impossible to divorce that from the fact that our remaining time together is short. And sometimes this just pops up when I’m feeling good. It’s also hard to discuss this without getting back into the sadder emotions of it, which I’m trying not to do. There’s enough sadness already.
But there was a lot of good. We looked at Rolling Stone’s top 100 Beatles songs issue and I told him my Dear Prudence story - how before I started dating my girlfriend, I invited her to a party only to find I couldn’t get any alone time with her to find out if she was interested, so I played Dear Prudence for her on my stereo and she understood I was trying to communicate with her - and he thought that was a great story. I’ve been with my girlfriend for almost 4 1/2 years and somehow I’d never told him about that. He also showed me his first collage. He’s started doing art therapy and seems to be enjoying it a lot. His first piece is mostly instruments and artists cut out from music magazines, and there are some concert tickets and band logos other things on there. It’s called “It’s Not a Hobby.” He’s also decorating a small folding table, glueing tiles and things on there, and he’s starting a bigger collage of camp pictures. He’s asked his friends to contribute and he’s also connecting with tons of them through Facebook.
And he’s going outside a little bit. He can’t walk, but he’s had a few meals on the back patio the last few days. Before that I’m not sure when he last went out of the house other than our hospital visit early this month. He’s definitely in a better mood and that’s so important. He does admit to struggling but I don’t press him to talk about how he’s feeling. Mostly we talk about the hundreds of hours of music he’s downloading. My mix CD turned him on to Warren Zevon, and since then he’s been listening to John Coltrane, Miles Davis, Thelonious Monk and Grant Green. When I was there Sunday, he had five weeks’ worth of music on iTunes and he’d listened to almost every single song on there. (He insisted he’d heard every one.) I’ve been telling people to keep giving him iTunes cards.
I also made a point of seeing some of my friends this weekend even though it curtailed my time with my family. I hadn’t seen any of them in about a month, so aside from my girlfriend there was kind of a lack of grownup time. One of them visited my family for a bit and then we talked until about 2 a.m. Sunday. I visited two other people Sunday night. All of that was helpful.
Not everything is great. My grandmother turned 90 yesterday (and my grandfather will be 90 tomorrow), which is very nice on its own but stirs up the awareness that they’re about to outlive their grandson. And when I called to wish my grandmother a happy birthday, I couldn’t really tell her what’s happening in my life because she doesn’t know about all this. My mother doesn’t want to let her know yet and it’s getting dishonest. Yes, she may not be in great shape to handle it, but she’s entitled to know and deal with this in whatever way she needs to. And she’ll want to see him, although there’s still time for that. He’s making plans to see some of his friends when they come from from college for Thanksgiving, and all I can think is ‘here’s hoping.’
Sunday night I had a two- or three-part dream where first my girlfriend was diagnosed with a chordoma, then I woke up, went back to sleep, and had a dream where I got the same diagnosis. It was the wake up with a scream stuck in your throat kind of dream. That wasn’t so fun.
Ah, Marley.
Take of yourself too, so you can keep being there for your brother. Do you have people to talk to?
You’re good people, Marley.
Marley - It’s so hard to know what to say, because there really is no right thing. I wish you and your family the strength to get through this.
StG
{{{Marley and family}}}
Jeez, Marley, I hardly know what to say. This whole thing sounds awful and my thoughts go out to you and your family.
What’s wrong with informing him of that possibility? If he had nausea, would you think it disrespectful to say “I’ve heard ginger can help with that, would you like to try some?”?
You inform him, he decides.
ETA: my aunt’s husband, who died of cancer on August 8th, was on palliative chemo for over a year. Not at the end, there came a point where the minimal dosages of chemo were not being beneficial any more, but it was over a year between “sorry but there is no way short of a miracle you’ll survive this, we’re going palliative” and “no more chemo, it’s hurting more than it helps”. Palliative does not attempt to make people last longer (which must not be confused with “live longer” and which I understand your brother does not want), only to make what little time they have left be less bad.