Friday, June 09, 2006

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.

6 comments:

Frarella said...

"Hey man, need a bag?" Not for 8 G's bro but if it helps you and fights this bullshit, fucked up Cancer then I'm in.

Blogging is kinda fucked up also. Your writing is so brilliant and to respond to your thoughts can be intimidating.... even though i'm "anonymous." Your words are so important to me that most days I check the blog before I check anything

I Love you bro and when I read your blog it makes me think,of you, our friendship, life without you and wierd shit like what it's like to wake up every morning and how long it takes for you to think "fuckin Cancer" or is it always the first thing that comes to your mind when you open your eyes in the morning. Know this - I'm on the steel merry go round with you looking at the horizon because when I look dowm or up on this thing - the center or the edge -I get fuckin sick!

wonderland said...

i'm on it too but then maybe you also need a room to breathe. mr. j. i just keep wondering what it really means to be there for you, especially now when your time is so limited yet so filled with families and friends. i just hold my breath and wait, wait for what i dont know. i'm a slow learner, only now do i begin to understand how love can be stifling. for now, at least grant me this, i'm here if you ever need me.

tossing salads said...

wonderland - loved your comment about him needing room. im his sister and dont know what im to do. if im to visit or not. what is it that he needs. so i just wait also.

spot, loved your blog. im assuming that the 'sarcastic grin' might be referring to the dan. but, as always, i may be wrong.

your descriptions of your community. yep, i so get it. im a part of that community in an honorary position, gratefully. you know what i do, maybe, not really. but i see it everyday, the slow and at times, not so slow slide of these dear people. im honored that they trust me, come to me and let me help them. its an honor i havent had since being able to care for dan. the knowledge i receive(ed) from him and this community has been overwhelming, at times, and life altering. it is astounding what the human spirit can endure and still continue to exist and grow and give.

so, as wonderland said so eloquently, 'at least grant me this, im here if you ever need me'.

love, sue

Slarry said...

LEFT OF CENTER

If you want me
You can find me
Left of center
Off of the strip


In the outskirts
In the fringes
In the corner
Out of the grip


When they ask me
"What are you looking at?"
I always answer
"Nothing much" (not much)
I think they know that
I'm looking at them
I think they think
I must be out of touch


But I'm only
In the outskirts
And in the fringes
On the edge
And off the avenue
And if you want me
You can find me
Left of center
Wondering about you


I think that somehow
Somewhere inside of us
We must be similar
If not the same
So I continue
To be wanting you
Left of center
Against the grain


If you want me
You can find me

Left of center
Off of the strip
In the outskirts
In the fringes
In the corner
Out of the grip


When they ask me
"What are you looking at?"
I always answer
"Nothing much" (not much)
I think they know that
I'm looking at them
I think they think
I must be out of touch


But I'm only
In the outskirts
And in the fringes
On the edge
And off the avenue
And if you want me
You can find me
Left of center
Wondering about you
Wondering about you

Suzanne Vega

permission granted---
FRIDAY, later June 9th 2006

Slarry said...

HANGING WITH MR. JONES ONE FRIDAY IN JUNE:

FRI. JUNE 9, 2006

It is always a delight when Mr. Jones comes home for a visit. This visit, a little more bitter- sweet
then the last. All is sweet, the sweetest of sweet, ( Mr. Jones is sweet ). The bitter, the ever present wretched cancer eroding and eating away at his body, strength, quality of life, now attacking his mood, invading his thoughts, taking away his interest in certain foods, restaurants that we used to enjoy and share together.

Also bitter, the equally vile and abdominal and more obvious side -effects of chemotherapy--- his life line, that paradoxically, causes him pain, sleepless nights, take away his taste buds for the Traditional, almost ceremonial cravings and meals at The Red Iguana. Some of my fondest memories of Mr. Jones occurred there. Now, too painful to even ask what he wants to eat ... DOES ANYTHING SOUND GOOD? His eating is now robotic, perfunctionary, a necessity to keep him alive and living longer. It is not just fun anymore.

Do we ever stop and think how much fun a night out dining with our friends or family is-- the ability, the sheer joy of consuming delightful, culinary delights, TOGETHER really is????
I never counted it as one of my greatest blessings, something to actually be grateful for. Is it one of my favorite things to do, YES, thinking it would ever be taken away from me or how much I would miss it-- frankly never crossed my mind. It does now.

And I am not talking about the less fortunate people in Africa or wherever, who have nothing to eat at all- I am well aware of their demise and it, of course, sickens me. However, this is about my brother, someone sitting right next to me, or wandering somewhere in the house, who I have loved, cared for forever-- and always will.

Eating out, a plate full of enchiladas, with chocolate mole, though, keeps invading my mind, the smell of them easy to remember, my many meals with Mr. Jones with his friends and our family at the Red Iguana, are so vivid and prevalent in my brain now --with every glass of bluish Gatorade that he drinks, every stinking swig of Boost or Ensure-- this small joy, in comparison to bigger and loftier goals: Having legal and equal rights for EVERYONE, the ability to afford a nice vacation by the city by the bay, the ability to work and own a home. These are all pleasures to be grateful for. All I want and wish today, is for my cherished brother, to be able to taste, crave and enjoy his favorite meal. Is that too much to ask? And who do I ask this question to? Who is going to grant him this one small request? Yes, this pains me-- it is anguish
and makes me sad.

So, for this Friday, I will be grateful for our shared interest in really good fountain pens and the discussion that followed afterwards. and at looking at and discussing our shared liking of small and unique boxes--- something we both use to keep our pens in. Or other small boxes, that we just learned about one another today, that we each have, that we both keep meaningful treasures in--- whether it is a piece of jewelry from a far away, yet beloved friend, a gemstone, a rock or a cherished love letter.
My brother and I share a commonality for small boxes, and the more we talked the more we realized, we use them for the same types of things. Unique and meaningful treasures.
So, yes, today was sweet. More sweet than bitter, for he is staying at my house, where I can hear his voice more easily and often. His physical presence is calming.

Today, I will be thankful for my dogs, who give him little nudges and kisses. Also, that as thin as he has gotten, he is still such a fine, healthy looking man, with a unique way of walking--- he strides and glides, with confidence. That has not been taken from him. I will also remember and be grateful for his patience with me---- his ability to reel me in, when I become anxious and distracted. And I’ll be grateful for his late night run in the rain last night, with thunder and lightening booming all around him, he ran. And though it was shorter than usual, and he had a difficult time breathing--- he ran, as he now runs daily, metaphorically and in every sense and meaning of the word, runs and fights for his life.

I love Hanging With Mr. Jones. How very much I will miss him.
Still hoping for a miracle or just an enchilada with mole, for today.

Love,

Sheri
Repeated from yesterday, for reasons known only to me. SAS

spacely said...

Hey my little spot tricia you know if you ever need me to stay in the center of your merry-go-round to enjoy with you or to hold you up, you know where to find me or if you were really adventurous sometime you could come set in the center of my crazy families merry-ro-round. (tee hee)(See I can't spell again). Someday if I really work hard maybe I could write one tenth as good as you!