Wednesday, June 28, 2006

6.28.06, On Comments, Symptoms, & the Angelus Novus

[my god, i just realized this is a long post, so i'll let this serve as tomorrow's content too, then i'll just post numbers or something short. -Mr. J]

Let’s start with the scale today. Franky Scale: 7; doing well overall, though some strange and intense fatigue arrived at about 11 a.m. and kicked my butt into bed for about two hours, and in the sleep came dreams, but those later. Even after twelve weeks of chemo (having just finished the 4th three-week cycle) and this f-word of tiredness, I’m not really used to it. I can have a finger on my laptop trackpad and suddenly fall asleep — that kind of sleep that happens when you’re in a lecture boring you to unconsciousness, I can go sit on the toilet and a minute, two?, three? later realize that I just fell asleep. That’s how it comes, no warning, just effects. And then with sleep, I at least feel guilty half the time, like “Ah shit, I can’t just take naps all the time! That’s totally unproductive,” and somehow forgetting that other part of my brain trying to say “Take a nap, you moron! You’re dying of cancer for Chrissake.” Oh yeah, that’s right.

On the thread of sleep:
I have really welcomed the last set of comments to the blog. At last, I see a few people from different parts of blogland, cancer blogland that is (sorry, I’m not a big fan of the word “blogosphere”), are coming together, and some larger sense of community is being established. Not in the cheesy sense but rather as geographically distanced individuals who share a sense of an entirely senseless grief, one that looms always a little larger for some of us, sometimes daily, until, I assume, it will explode. It’s good, then, to see such people come together, talk about it, and then spit in the face of that looming. A second point is that in addition to setting up the blog as a means of establishing better family-friend communication, there was a wish to “help out,” perhaps to speak to someone who was lost or had a question or who was just coming to their own personal degree of feeling fucked up — how else are you going to describe this? — and shattered. In many ways, like I do. What do you do with that news, that diagnosis, your “new life” that is condensed into six months or a year’s worth of payments, payments of various size, and payments in reverse. Now, I’m starting to see commentors, as in the last group, with a family member dealing with pancreatic cancer. That’s reason enough to keep writing, not that I’d stop, but even if smaller more mundane questions never arise between us it's worth it. Then, too, or finally, there was the question on symptoms. This last question might take a whole blog of its own but I’ll give at least the outline of an answer this evening.

On Symptoms: They Arise in the Night
Remember that line from Buckaroo Bonzai, where John Lithgow’s character, John Bigboo-tay, is rousing the troops and saying “History—is made at night! Character—is what you are in the dark!” Well, me too it seems, with cancer. In waking life everybody gets stomach aches, strange bowel issues, gas, some kind of pain now and then, right? So why worry? It’s probably stress. We all have too much stress, especially all the overly self-conscious and neurotic academic types I know. Could be an ulcer, IBS, who knows. But within my memory, maybe late 2004 and definitely in 2005 I’d get stomach pains at night. The “night” part is key because daytime distractions like work are just that, and passing over pains is easy. Part of life. My mom’s line, and Nietzsche’s “If it doesn’t kill you, it’ll just make you stronger.” Good ole Puritan thinking, I always thought; until now. Now I think, some kind of sick linguistic-cosmic irony.

As it turns out, joke’s on me. I’d wake up with a “stomach ache,” and I don’t even know where my pancreas is at this point in my life, so it’s just a stomach ache. They would be so intense sometimes, however, that I’d wake up in the middle of the night. It would break through my sleep and often I’d have to curl up in the fetal position to ease it as much as I could, until sleep would return. Or I could have a drink. Who knows? Anything might help, and when you’re that tired… Apparently I masked these pains and coped in various ways without ever identifying anything until the summer of last year. A friend was staying with me and during the, say, five days she was in town this happened maybe twice. I’d get up, pained look on my face, eyes probably gray if the lights had been on, and I’d find enough bed space to curl into my little ball of waiting. My friend had the presence of mind to point out that this might be somehow abnormal, that usually people don’t get pulled from REM sleep by stomach pain, and that maybe, just maybe, I should see a doctor.

Say August of 2005. So in November or so I went in, tests began, and as I’ll write about later, for the various reasons that make pancreatic cancer so hard to find at any early stage, it took until March to diagnose it. The Big Casino. Then I got the Call, the GI specialist I’d been referred to — twin brother of my primary care provider — told me the CT scan and the EUS (endoscopic ultrasound) said pancreas cancer. Tumor about 6-something by 2-something cm. Me: “I guess that’s serious . . .?” I wonder what he was thinking when I asked that brilliant question. Those were the symptoms that did it, finally got my attention, and the luck of having a friend around with more sense than I.

Bad dreams:
As I said above, there came dreams today. Odd ones. (Another Frank story: There was a time when if you woke up in Frank’s house and started to say “I had this really fucked up dream where….” and the rule was, Frank would roll his eyes, and you’d have to pay a quarter or you couldn't tell it — nobody’s really that interested in another’s dreams, unless you link back to our ongoing underlying psychoanalytic thread. You gotta pay for it or it doesn’t work, Lacan would say.) Anyway, in my story, today I was dreaming about death, and this freaked me out because my dreams are almost never about death, especially not since M20, diagnosis day. So why today? Is it an Ambien come down since I’ve not taken any for three days in a row after doing it every night for two months? A residual high from the stuff? Is it deep, metaphysical, and meaningful? I prefer to think not. (Kubler-Ross stage: Denial? I don’t think so.) Rather, I think the oddest thing is that I haven’t dreamt more about death recently.

More on Sleep, and Poetry:
Whence the poem (below)? All poems are about life and love, at least from one angle — the gaining or losing of both, the fear of one or the other, and logically this brings in death, sickness, sadness, more fear. A poetry teacher I had once said “Fear of loss is every lover’s fear.” How does that relate? Not sure really, but it seems to fit into most poems, through denial and negation if not by more explicit means. Here, too, of course, it relates to cancer too. The blog subtitle, and occasional distraction. We think in happy denial, sometimes, that that’s why we’re here, our cyber raison d’etre. (Yeah yeah I make my living talking & teaching poetry, and I can’t seem to stop writing it, but it’s not just that. Well, maybe not.) Intense dreams, daytime naps, waking into thickness, like the first moment you step out the Exit of a movie theater after watching a matinee, the blinding light and then the clear recall of where we are — all these bring me to think of a poem I did a few years ago. Done in upstate NY, in fact, so there’s one more thread to the now for the meaning finders. In any event, there’s humor in the poem, I think, and hopefully this comes across. If not, then it’s simply another distraction and it’s more fun to think about than what it might mean to wake up at 3 a.m. and curl up in the fetal position.

[my blog/HTML skills are weak still so instead of regular indents on certain lines, imagine them where you see em-dashes, for drop lines. and if sheds any light, I wrote this while I was taking a class with Benedict Anderson, so.]

Angelus Novus,
—not by Paul Klee”

"Every passion borders on the chaotic, . . . on the chaos of memories."
—Walter Benjamin

I take long naps, sometimes I dream.
I dream in Technicolor, sometimes in German.
Bin gar keine Russin, stamm' aus Litauen, echt deutsch.
In my dream Ben Anderson is there, naked
as though he is about to move this way
toward something he is contemplating fixedly,
his eyes are staring,
--------------------------his mouth is open,
---------------------------------------------------his wings are spread,
and he is running blithely clowning after me,
this is how I dream him, but in my wish fulfilled
his face is turned toward the past,
where I see a semester's writing he sees
the wreckage of papers past piled ominously at his feet,
pushed forward, paper by paper, by a force
I cannot call progress, but perhaps
My angel, would like to stay, awaken the dead,
make whole what has been smashed,
but a storm is blowing from Paradise,
he is naked, I am not,
his wings wrenched open in satiric violence,
this storm seductively propels him into my future,
he is menacing otherly comical, I afraid to ask
of that to which his back is turned, while
the stack of scribblings before him grows dreamward.
This storm is what they call progress, but wait,
now he has recognized me, am I no longer his slave?
Not even the chess-playing dwarf of historical materialism
can save me
-----------------------I fear.

Ithaca, NY (the poem, that is)


Anderson Imes said...

I'm glad we have similar goals in this. I don't pretend to think that the podcasts my father and I record will be all that interesting to very many people - even in this age of reality TV - but I do think that the community that will be seeking this information out is a growing one.

I think it's important to share these experiences with each other. After all, in this day and age of not knowing who your neighbor is, exactly what is your "community"? Even though I'm not really looking forward to moving into this crappy neighborhood with you, I do like knowing you and everyone else here is willing to sit on the front porch for a spell.

Thanks for writing.

Slarry said...

Wednesday June 28, 2006

When you come to the edge of all the light you know and are about to step off into the darkness of the unknown, faith is knowing one of two things will happen: there will be something solid to stand on,
or you will be taught how to fly.
Patrick Overton
( graciously given to me by a supportive, kind friend upon my return from Seattle, who has had her own share of sorrow and adversity )

Dear Mr. Jones:
I have enjoyed and learned so much from your last three blogs. The comments from previous kind lurkers, who have bravely passed to the next stage, to that of commenters, has brought an even broader sense of solidarity, commonality-- all filled with their own unique way of support, understanding and some with their own stories to share. It has been so cool. Like the threads that you speak of, the mere six degrees that separate us, show that we are more unified than apart.
I love your blog, and as one of your sisters, to you Mr. Jones, and to those of you who comment either on page or in your heart, please know how much it helps us, his family, to hear your thoughts and kind wishes. It is gratifying to know Mr. Jones is so cared for and loved-- so supported by so many.
( for the longest time, we thought we were the only one’s who liked him ) : )

I think, I am being taught how to fly... To learn about this journey of impending loss, the pain of pancreatic cancer, of watching someone you love suffering, unbearable yes, but also, how much living is still going on. So much life. Nothing is being said or spoken that is of no consequence-- everything is more real, more important.

We just returned from visiting my brother in Seattle--- and even through some misunderstandings and difficult and awkward moments occurred, at the base and core of all that I experienced was LOVE and unity. I am grateful for a patient brother.

To Madame X-- seriously, what a pleasure to meet you. We think of you as one of Mr. jones’s Angels in Seattle. I cannot thank you enough. My bigger question is, what happened with the cabinets? Did they remain gray? : ) And you are, were, soothing and it was gratifying and refreshing to read and hear your words. And though you are slender, lefty and I believe your shoulders are strong enough for us to lean on occasionally, and thank you for your generous offer. I know we will need it. And we will be here for you, as well. Promise.

To Mr. Jones, thank you for sharing your memories of the beginnings of your symptoms. It will hopefully help others not have to go through the nausea, fatigue, discomfort and pain you are currently experiencing. As someone who cares for you, I hate that you are suffering. To the others who have either lost someone to this wretched disease, or are experiencing it themselves, my heart goes out to you. Pancreatic cancer is just putrid. So yes, naps are good. I loved your poem. I love that the blog seems more global, more inclusive-- it is as fascinating as it is touching, as it is heartbreaking. It is comforting to me every time you write something and every time someone comments and shares their feelings.

I love you my brother and hope you are having a relaxing time in New York.
Thank you for your patience with me. I wish you good sleep and pleasant dreams.
I’m off to bed with my own Ambien. : )

Love from Zion. Mom sends infinite numbers. Only about four times today. I think she likes you a little bit.


Slarry said...

To All the dear Blog readers:
For any of you, and I know there are many, who have ever had the urge to "comment," I urge you to do so. I know it can be a little intimidating at first, almost scary, but I promise you, you will feel empowered as you write.

With it, you will find that you have joined a community of people, who not only love, care and support Mr. Jones
but also be offering comfort to those of us closest to him. The feeling it gives you is unimaginable-- and can often leave you breathless, tearful but also somewhat content. You will be helping more people then you can imagine and thus, expanding your heart to the weightier matters of life.

Commenting, writing what you are feeling, is the greatest gift you can offer to Mr. Jones. He reads and appreciates each one. Some of you are from his past, some of you are his current close friends and family and some are people who have experienced loss and suffering. Unfortunately, that is a universal truth-- life is filled with suffering and adversity.

But it also offers us the chance to lean on one another, learn from one another and make this often cynical world of ours a better, kinder, more gentle and loving place to be.

Just a thought-- I appreciate the unspoken, silent words of comfort and encouragement too.

Peace and Healthy Stools.


Don't forget to drink your fluids. : )