6.09.06, Some People Post, Some People Dream

Franky Scale: 6ish.

No chemo drugs for nearly a week now. Today from the lovely FedEx man, however, I'm blessed with another bottle of the pill version. Start tomorrow. Then another set of IV infusions, too big for a bottle; they come in a bag, it just hangs there and costs money. A hell of a lot of money. It's unbelievable and harsh the cost, say near 8K a bag — then I turn out to be lucky with my insurance, to be able to do it in the first place. Wait, lucky to have pancreatic cancer, lucky for metastasis. Something like that: lucky since I suppose somehow it could be worse. Before today the symptoms and side-effects seemed to abate, a little "healthier" each day, which is the truism of life, right? A little better and better, until it changes. In Salt Lake I come for what, some escape, some "getting away" . . . and I just woke from a nap filled with dreams that would scare Freud.

Is it place? Is it time? Is it the moment, metaphorically? Some people post comments, they read, they follow. Some do the posting while others lurk, some comment and lurk while others sleep and dream, but of what I can't really say. Some details linger and hang with me, some strewn across high desert sky, some scattered next to the bed, some hiding inside the well-used bottle of oxycodone. That bottle, too and or by the way, is secondary. It's back up. It's breakthrough. There is something about my dreams lately that has changed qualitatively — I don't know if it's all the drugs that course through my system, I don't know if it's the chemo brain, as they say. They. "They." They are me. Who's kidding whom. No one: that is the goal. So if anyone ever asks sometimes why take it so seriously. . . That was one of the first lessons I learned sitting in a waiting room at the Seattle Cancer Care Alliance, I looked around and at times could see the lake, at times the nearly-clear Seattle sky, but all around me I saw, and this is literal — not to be cheesy, to be glib, to be sarcastic, what you will — I saw community. I am them, they are me. This is what went through my head sitting there, waiting for blood. To give, that is, to have it taken. Funny when you're sick you don't give anymore, you have it taken. I saw all the people as most of you have seen them, no hair common, patchwork hair, all the stages in between, skin and bones some, some pain visible some not, some hope shattered some not, not all, and me today still now if you'd believe it, which you would if you'd see me, I still have mine and I think, based on those who have seen my hair and the rest of me that I look normal. Another word. It's the time the distance that makes me look small or withered or hairless or too thin in the eye of your mind, and how surprising amazing mind-fogging and not because I lack the vocabulary just sheer fucked up that none of that is true, yet perhaps. That I can so not look sick. So, then it was, which is the real point that I looked around and saw a community and realized I was, I am, a part. These are my people, I thought, we're all the same. A pause for thought, mine.

Normal looking, still wearing sometimes a "kind of" sarcastic grin — just trying to carry on for my nephew, so cut me some slack while and if you write, a longhand of reverse genetics, reverse impossible genetics, why not? — but the point that I am now part of this group, that we're the same inside no matter what the outsides are. No matter the age. No matter the caregiver. Yep, I go to SCCA and I can walk and pick up scripts and show my green card and get my little wristband — no not yellow please or sorry — and I am generally strong and able and I am "The Otherwise Healthy 38 Year-old Male" (it's in my chart), but still when I go with someone I go with my caregiver, at least for that day. There have been a few but Gillian knows about this process pretty well, she's spent a number of hours in the chemo ward or the infusion palace or whatever it's called. Something to do with infusion. So where is it all going, that I'm not sure, I just have this state of mind after a nap, after fatigue that came on like a ton of bricks, after lunch with my mother which was not so much like a ton of bricks, after going to the hospital with her — and for her I might add, not for me, a check up, corotid arteries, both sides, black white and red blue, clarity and occlusion — and after some writing but not too much and after food after a handful of meds. With the FedEx man in between. Everybody's fantasy.

This is what Utah will do to you: now what? Do I warn you? Do I invite you? Do I recommend you just read on, make your comments, call now and again, and provide support that does not go unnoticed? Yes, you have to remember the latter, even if I'm napping, even if fatigued, even when it's pouring here like Seattle which it tends to do each time I come like it follows me to remind of something that's supposed to be remembered through rain and about another city and perhaps even another time. I do not know. Every day passes and it gets farther from normalcy I'd say, while at the same time there is this need to work to conform to the normal, to get back to the everyday, to try and push past the barriers that didn't exist before. At least in part that's what I feel. And too there is this seeing. Hundreds of people most so strong and "there," which I need, and still everyone in their own place, from their own place, all trying to deal with individual lives that don't touch this. This doesn't stay put though. So you read a post a comment a phonecall a card and you see a lot of individuals with a lot of individual "situations," at times coming together, at times standing in the same spot looking in the same direction. At times, between the lines, you see the varieties of awareness, love, pain, support, suffering. All the sources varied too.

I feel like I'm sitting at the center of the little steel merry-go-round thing you have to push into action by running in circles in the sand — you get it going from the outside then jump on, the try to move centerward. I don't think I ever pushed this time, don't know, I just know I feel like I'm in the center and watching. The first phone call, then the second diagnosis, were like taps on the shoulder that said "Hey, you're sitting in the center of the little steel merry-go-round thing on the playground, see how long you can either keep moving, or stay sitting there," they said. I just watch the rest of the world and all of you spin around the edges. Remember how the sand gets worn down so there's a little trough, too, a concentric circle around the little merry-go-round? I watch everyone get closer or farther from it, sit or run, push or take notes. It just spins, I just sit.

A line from somewhere if I remember, it's like rain from another city, "I take naps in the afternoon lately, sometimes I dream." Something like that.