I’m so very sorry. I can’t think of anything to say that isn’t utterly inadequate. Things like this just shouldn’t happen.
FUCK! Health and comfort to you. Thank you for letting us in…it’s a mighty honor.
Oh hell. My sister and I love each other, though we’re not very close, and I can’t imagine what I’d do if this happened to her.
My prayers and best wishes for your brother, you, your family and friends.
Well, fuck. Take care of yourself, and each other. hugs
This was a thread I hoped you’d never have to start.
Your brother sounds like one hell of a guy, and it has been a privilege to know him vicariously through your loving words over the years.
You and yours are in my thoughts-I know that our words will never be nearly enough, but I hope you can take some comfort in them.
Marley, because of you, I told my brother today how much I love him.
I’m so sorry to hear this news. No words are going to be comforting to you so all I can say is if you need us we’re here. Unload on us what you can’t say to anyone else.
I spent Friday evening and almost all day Saturday with my family, and it was a much more positive experience than Tuesday/Wednesday. I’ve had more time to deal with the news and my brother also seemed to be feeling a lot better. They’re giving him more medication, so he seemed more comfortable and a bit more mobile, and the hospice people have helped, although I think they’re only going to come to the house when my family calls and asks for them. I guess that’s all they need to do or all they think they need to spare for him right now. I find it a little frustrating but everybody else seems to be satisfied. (The hospital bed may not happen. He needs the bed to be wide enough for two people, and if they can only get a narrow one he’s not interested. We’ll see what happens.)
Friday night I caught a train out as soon as I got off work, and I got to the house after running some errands with my mother. I sat down to dinner with my brothers and we watched a lot of YouTube videos of Mitch Hedberg, who Tyler has gotten into recently. I think he was terrific and we had a good time with those. It was sort of the first time I’d seen him having fun in a while. I showed him some videos of Kyle Kinane, a comic I got into recently, but the videos I found online weren’t my favorites and he wasn’t digging it. He went to bed a little while after that. At night he goes into his bedroom and our mother reads to him. Right now they’re somewhere in The Mennyms. I know I read it in the distant past but I don’t remember it very well. This was private time for them and she spends most of her nights there these days.
So I went upstairs and talked to our middle brother, who is kind of the forgotten man in this story. It was a pretty simple and blunt conversation - I think the first thing I said was “You know what sucks? Everything about this.” Not surprisingly my parents have skimped on the details in telling him what’s happening, so he imagined there was more time left than there probably is. So we had a good talk about all this. He and I don’t talk a lot, really. He’s very reticent about his feelings and our relationship is very different than mine and Tyler’s. We’re close enough that there was plenty of sibling rivalry and I just didn’t give him an inch throughout our youths. He probably felt like he came up short in everything. It’s not all my fault but in those respects we haven’t been close. Things have improved lately and I feel good about that. That’s a positive at least.
Later on I went downstairs and found my mom at the kitchen table. She was reading a New Yorker article I took her the other day. It’s a long article about end of life care written by a practicing physician. I sat down and she started complaining about how long the article is. I said I’d wanted her to read it because I thought she was going to push for Tyler to have even more treatment, and that maybe it wasn’t necessary since she hasn’t been doing that. She said she wasn’t giving up on that and still wanted to find out what the options are.*
I said that didn’t seem to be his priority and that she needs to treat him like a man in all this. He needs that. He’s been through so much and it’s his life. Even if he tried one of the drugs and it worked my mother isn’t hoping for more than another few weeks, and maybe a few weeks isn’t important to him. Maybe he’d rather try to accept this and go comfortably instead of scratching and clawing for every last minute. I told her all of that and she said she didn’t want him to do anything rash. I answered that it’s not possible to do nothing rashly. If he changes his mind and wants to try one of these pills, he can do that, whereas if he starts on treatment and has to deal with the side effects, that might not be so easy to reverse. Around that time she started to cry and said she was afraid he’d decide later on that he wanted treatment, but that then it would be too late.
I didn’t have much to say to that other than the fact that I doubt it’ll happen. I think he’s had enough and I get it. It’s true that any theoretical benefit gets less with time but the odds any of these drugs helps him is very slim. Even then, the tumor is probably far enough along to kill him. If its progress were slowed, it would just happen more slowly.
*She says that but I’m not inclined to believe her. I think she wants to convince herself it’s not hopeless. But the truth is that I brought her PubMed entries about two oral cancer drugs on Tuesday and the pages are still sitting there on the kitchen counter. She hasn’t read them, she’s not making any calls. She knows nothing else will happen but she’s not ready to face that.
Before I went to bed I told her something like “I don’t know if anybody’s ever said this to you, but I’m sorry this is happening to you. You always did everything you could for us and you don’t deserve it.” Which made her cry again but I thought it needed to be said. She responded the way you’d expect, which was that she doesn’t care what’s happening to her. But this is something that’s happened to all of us and there’s no need to deny that. Around that point middle brother walked in again and said he didn’t think he’d ever seen her cry before. And that’s really only a slight overstatement. Before this whole thing started I could only think of two times I’d seen her cry in my entire life.
That was about it for me that night. The dogs woke me up in the morning and I went out with my father and his brother, who was in town just for the day. We did some errands and at one point he asked me how Tyler’s health had been before we got this news. I said the same thing I posted upthread: that he’d had a variety of problems with swallowing and speech since the winter, but things were pretty stable until late July and then everything went to hell very fast. I saw him in late July or early August and then I didn’t see him again until Tuesday, and the difference was very stark. In August he seemed able to get around and he even played a little guitar, and now he doesn’t stand up very much and needs a cane to go from place to place. So that was a fun talk.
A little while after we got back two of Tyler’s camp friends arrived. They’ve been off at college and hadn’t seen him since he left camp. They went into his bedroom and he told them the news, and they smoked a little together. One of the boys was crying when he came out of the room. They both looked stunned. My dad thanked them for coming and reminded them that he’s still here and that Tyler’s also glad they could make it. We played a little Mario Party but I basically got disinvited and had no idea how to play anyway. I went to the basement and played a little guitar with them. We did Sitting on Top of the World and Statesboro Blues, just sort of playing along with a radio show. Around that time a friend of mine came by and gave us a $100 gift certificate to a Thai restaurant in town, and that took care of dinner for the six of us. Some of the leftovers are hanging out in my fridge.
I said goodnight to Tyler and told him I loved him again. I’ve been putting off the serious conversations so far. There are a lot of things I plan to say but I don’t think it’s time. But I did tell him to let me know if he needed anything and that if he needed someone to keep our mother off his back, I’d take care of it.
I spent a few more minutes talking to my uncle about legacies and what you leave behind in the world and things like that. He told me a little about his grandmother (who I never knew) and said that when he does something kind he thinks it’s a tribute to her. We spent some time talking about the idea of memory and such. He recommended I read Thornton Wilder’s The Bridge of San Luis Rey, which I probably will - he was saying Wilder, or his narrator, concludes that the bridge between life and death is love, and that love is the most important thing even if there is no explanation for a tragedy or no memory of the person, that it exists on its own and that’s enough. I can see the sense in that. I think that’s about all we get.
I’ll be visiting them again during the week or maybe over the weekend. I have a feeling my softball team starts playing again on the 12th - part of our entry fees are going to the Chordoma Foundation, same as last season - but I’m not sure how many games I’m going to make. I think over the summer they had a much better record in games I missed, so maybe this will work out for everyone.
During the week I was thinking about something I could do as a tribute to Tyler. Some of you might remember that I got a tattoo representing our family just before he went in for his first surgery. I decided to do that again. Today we got up around noon and slowly wandered downtown, and around 4 p.m. I got some new artwork done. I think I mentioned upthread that we’ve been wearing and selling these bracelets to raise money for the foundation. I didn’t wear mine all that often, really. I’d wear it for a day or a few days and then either forget or just get tired of feeling it move around on my wrist - it’s too big for my forearm. So I got one tattooed on and now it fits perfectly. Or at least it will when the swelling goes down. I’m not going to get the text done because I don’t like the idea of having “chordoma” written on my skin. And since it mentions my brother by name I think they always made him a little self conscious. But the band by itself, I think, is very good and the color looks right.
When I laid down on the table I noticed that the tattoo artist had a large drawing of a microscope on her arm with banners that said “mom and dad.” I asked if her parents were scientists and it turns out they both work in cancer research. That felt like one of those cosmic coincidences and it convinced me I’d made the right decision. Although of course by that time she was already tattooing me. But I spent most of the trip down there and part of the time in the wait room wondering if this was really what I wanted to do. Having finished I feel really good about it. I think it’s going to look cool and I think she nailed the color.
I realized the other day that I spent years and years thinking about what kind of tattoo I wanted to get if I ever did get one. Most people play that game once in a while, I’m sure. I thought about band symbols and Simpsons stuff and animals and things like that and never got around to having any of them done. I didn’t care enough. The only thing that motivated me to go under the needle was Tyler. That’s twice now. I think it also makes me one of the few people who’s gotten a tattoo on deadline. Whenever someone else tells me they’re considering a tattoo I always say “the nice thing about it is you never have to hurry into getting one,” and then I realize this makes me a big hypocrite because I’m the only person I’ve ever heard of who has gotten a tattoo in a hurry. But they’re both messages to him. I needed to get the first one done before he went in for surgery, which I did at the last possible minute, and now I needed to get this one done before he’s gone.
Here’s the first one, on my right arm just above the crook of my elbow. It’s a family symbol I made up. The roman numeral three represents me and my brothers, and the other two lines (of equal thickness, above and below) stand for my parents. I could’ve done an III or a V but they seemed a little boring. This is the new one. It’s swollen but I think it’ll look very good.
Your post has me in tears. The strength and love that you carry with you for your brother and your family, and that they carry, comes through your prose in clear beams.
I have been blessed by your sharing of this journey and I thank you for allowing complete strangers a glimpse into your life.
I just read thru this thread tonight, for the first time, because I saw Shodan’s new sticky.
I know I’m late in this, but my condolences to you and your family, Marley23, and also my respect. You and your’s seem to be handling this as well as anyone can, especially Tyler.
I really don’t know what more to say; I’m a bit broken up after reading all this in one sitting.
ETA: Those are awesome tattoos. You will never regret getting them. [thumbs up]
Having just turned 18, I cant even imagine this. Your brother is a strong guy, and I wish there was something I could do. I almost fucking cried reading through this.
Condolences man. Im so sorry.
Every time I read this thread, all I can think is “this is bullshit.”
This is bullshit and I am so sorry that Tyler has to go through it. I hope he endures the weeks to come with a minimum of pain and a maximum if grace. Ditto for the rest of your family. From my mouth to God’s ears, I know…
I hope it’s some comfort to know that your brother has fans around the world. I’ll be making a donation in his honor.
I’m sure I won’t. The first one did exactly what it was supposed to: impress the hell out of a 14-year-old. We’ll see what he thinks of the new one, but I’m glad I got it and it turns out I really like the splash of color on my arm.
Thank you. And yes, it’s amazing he’s facing all this at this time. We’re used to living through it but he’s still been so tough. If you want to do something and you can spare a few dollars, please think about giving to the Chordoma Foundation. There are details here.
Thanks. And yeah, it’s really a bunch of bullshit. We lose sight of that. Maybe it just hurts too much to think about very often. But it sucks, it’s crap, and it’s happening for no particular reason at all. It’s a bunch of intense and prolonged suffering that means nothing.
Marley - you might want to get in touch with the Allman Brothers folks, if you can. As I recall, they hung out with you guys after some of the concerts. They probably would like to know, and maybe send a card or something.
StG
I’ve thought about that a little, and yes, the band - Oteil Burbridge and Derek Trucks in particular - were great to Tyler. I might reach out to them. On the other hand my family has been stingy in spreading the news to this point and I don’t think he likes the idea of announcing to everybody over and over again that he’s going to die. He has their email addresses if he wants to get in touch with them, so for now it’s probably better for me to take my cues from him.
On that note I’m still in the process of filing for leave from work, and I see I need to get his signature on one of these forms authorizing the insurance company to get his medical information. That makes me very uncomfortable. Of course the only way around it would be for me to fake his signature on the form and I’m less comfortable with that, so I guess I’ll have to ask him in a few days.
I did talk to him by email this morning. It’s the first time he’d written to me in a while. Next time I’m out there, which might be Friday, we’ll finish up that episode of Psych. He also wants to play some Animal Liberation Orchestra music for me. I haven’t heard them before but he got into them last year, I think.
Today I think my mother has moved into a new phase of coping with all of this: I don’t know if she’s told her parents and sisters but she’s telling more of her friends. She showed me the email and it’s hard to read. She writes about her hope that Tyler would have a good summer at camp, which I think he mostly did, followed by her sorrow at the realization that he wasn’t going to be healthy enough to enroll at Florida in the fall. And until the last MRI she was hoping heis latest problems were caused by brain swelling as a side effect of radiation therapy and not another tumor. (She also explains that he was supposed to have an MRI sooner, but he canceled it. Obviously he had a pretty good idea what the results were going to be and he wasn’t ready to deal with it yet.) Maybe the most important thing for her is that she acknowledges that he’s not interested in any more treatment and doesn’t want to go on like this. I know that was very hard for her because she took longer than the rest of us in facing up to it. But I’m glad she’s getting there because I don’t want Tyler to spend his last weeks arguing with her about that, and I don’t want her to spend that time pushing him or handling the logistics of hospital trips or wondering if something impossible is going to happen. If they can focus on the reading and hugging and watching Scrubs and things like that I think we’ll all be happier.
Okay, that made me cry. How sweet.
May peace be with you and your family. I’m so sorry.
My thoughts are with you and your family.
This was a heartbreaking read (I’ve been around but I had misplaced my book with my passwords so I haven’t been able to respond till now)
I’m really sorry, Marley.
Marley, my family was touched by illness this year and I think I have some small idea about what you are going through. We expect pain in our lives as we age and lose people we love, but we just don’t expect this kind of pain. At least I never did. It’s so terribly unfair.
I’m so very sorry. My thoughts are with you, your brother and your family.