Nerves And Passion

This has been a day. Where do I start? (I know, at the very beginning - we've been here before...) First of all, remember the big donation that has been supposed to come for the last seven months? The one which would shake the world and change my job forever?

We got it.

We do not have the money in hand, so I am not completely convinced (I've been waiting SEVEN MONTHS, if you missed that part) but I am beginning to believe it as I hire staff, shuffle schedules, arrange trainings, etc. Oh, and here's the really fun part - we are supposed to start disbursements from this fund on November 16, also known as 12 working days from tomorrow. Hitting the ground running doesn't begin to describe it. It's hitting the ground galloping.

Not that I am complaining, you understand! I am suddenly full of nerves and passion in a way I haven't been in a long time. Nerves because my god, the responsibility! I never wanted to be in charge of something like this – it makes my stomach churn and my forehead break out in a cold sweat. I sit bolt upright in the middle of the night, panting, convinced that I have misallocated something.

But passion, also. Because just maybe this will lead to new independence, to true choices, for the women of this country. And that, to paraphrase Robert Frost, could make all the difference.

Yet these things seemed almost incidental tonight, because Mr. Husband and I had dinner with my friend the Chicken Thrower. He (the Chicken Thrower) and I met years ago when I was working at a theater company in Boston. I think it was my second paying job after college. The Chicken Thrower was a senior at the university affiliated with the theater. A few undergraduates were involved in these pieces, and he was cast in the production I was stage-managing. It was a horrible piece of theater written by a self-involved narcissist, and my friend’s character threw fried chicken (thus the name) at another character in a fit of pique.

However, because money was scarce, I was told that we would buy as few buckets of chicken as possible. Which meant, disgustingly, that we used every piece of chicken in the bucket before buying another – and as I recall, the script called for only two or three pieces. We bought a new bucket every third day, I think. Meanwhile, the previous bucket’s pieces got progressively more oily.

Eventually, the inevitable happened. In the middle of the heated speech that framed the throwing of the chicken, the Chicken Thrower lost control of it. It went flying through the air and, to my relief, splatted greasily somewhere other than an audience member’s lap. It was all I could do not into burst into hysterical laughter, but I managed by just not looking at him.

When you have a bond like that, it is hard to walk away from a friendship. I went to see two other productions he was in. He invited me over a time or two. I made eggs for him and some of his friends one morning. We drove to New Hampshire for the night. We played Tammy Wynette and sang along. We critiqued each other's taste in men. Two short months later he moved to California, and we have never since lived on the same coast.

Sometimes you meet a person for the first time and you think, “oh, there you are! I remember you!” and then the thought is swallowed by rational impulses. I can only explain my relationship with the Chicken Thrower in those terms, because any other way it is too weird. We are obvious counterparts; there is no question in my mind. I would say that in another life we were related, siblings or lovers or parent and child, but I’ve never believed in reincarnation.

Whatever else happens, I think we will stand by each other.

Crunch Static Rattle

Sorry about the absent blog - I know there are some folks who think something calamitous has happened to us when this page goes silent, and I was not able to get my reassurances up right away, for which I apologize. Also know, sweet worrywarts, that if something calamitous does happen I will make sure to post at least that something calamitous has happened, which at this point it has NOT. Just our friendly neighborhood internet and phone server pooping out. So if you called us in the last two or three weeks and heard only what sounded like an electrical storm, we were actually yelling into the phone "CALL US BACK ON OUR CELL PHONES! WE CANNOT HEAR YOU!".

Mr. Husband called the phone company and secured a time slot for them to come out, and I got an automated call back to confirm the time. This is what I heard, in a recorded voice: "static crackle rattle confirm that you still require crunch static crackle by pressing crackle rattle static". Since all I could hear was that I should press one of the buttons, I did - and discovered that I'd confirmed that our service had already been repaired. I asked Mr. Husband to call them back, since I did not trust that I would keep my cool. (My cool was, to be brutally honest, severely compromised.)

You'd think since we'd just dropped out of the queue, we'd be back to the end of the line. But Mr. Husband discovered that since he talked directly to the service people, we were scheduled for the very next day. A little backwards on the reinforcement, there, but I'm not complaining. All I'm saying is, that is not how it worked when you cut into the cafeteria line in high school, because that was a seriously no-cutting, no-backsies zone. For real.

In fact, although work is a little stressful right now (it has now been 7 months since the negotiations for the Grant-That-Shall-Not-Be-Named started, and I have been told everything from "we were never under consideration" to "once the formalities are over the check will be in the mail" - not in that order, alas) I am actually feeling better. The progress is so slow that I can barely see it, but certain things are getting easier. I still collapse when I get home, but not so enthusiastically that the sofa crashes through the floor. Weekends no longer mean two full days to sleep; I can actually plan projects to do as well. And today we began going out for Sunday brunch again.

Let's hear it for goat cheese and mushroom omelets.

with potatoes and fruit cup!

Technical Difficulties

The server may disappear again at any moment so this will be quick - I am experiencing technical difficulties that should be resolved by tomorrow evening. I will be back!

Crying A River

I thought that when I finished the treatments my anxiety level would fall. I mean, here I am, I completed the course without missing a single one, even though the treatment center is a half hour's drive away, and there's traffic, and I have work before and after it, and I am not allowed to drive. I didn't even get particularly sick. Just tired.

But I could cry you a river about tired - I usually make it through getting showered without feeling like I need a nap, but not always. Yesterday I had to go to my office briefly, in spite of the fact that it was Saturday; I did the chores that needed doing, which took about 45 minutes, and turned around and came back home. Took the bus both ways. Yet when I returned I was too exhausted to fix myself a meal, and went straight back to bed. I think I was up for a total of about 4 hours!

And unfortunately, if anything, my disquiet has increased since the treatments stopped. Part of it is, I think, that I am experiencing balance issues that make me feel, well, unstable. The precariousness in in my body communicates to my psychological state. It's a vicious circle. I'm thinking about getting a piece of 1x3' to practice walking on. If I fall, it will only be to the floor. The hard, wooden floor. Hmm. Maybe I need a mat.

I am also clenching my teeth more than usual - I went to the dentist earlier this week and my hygienist suggested that I chew (sugarless! Of course!) gum during the day to keep me from crashing my teeth into each other. So many of them are already broken from seizures and have been repaired that she's concerned about the integrity of my jaw. (I already wear a bite-guard at night.)

I am happy to say, however, that so far brushing my teeth has not induced a seizure. That would create a real conundrum, wouldn't it? Maybe you could use a whole lot of toothpicks and mouthwash.

For now, I am meditating twice a day, and in the middle of the night when I wake up. Deep, cleansing breaths. Relax. You are floating. That's right. Right out to sea.

Running Numbers

When I was in high school we read a book by Louise Meriwether called Daddy Was A Number Runner. It is a "coming of age" novel set in Harlem in the 1930s, and I must have been just a year or two older than the protagonist. I think it may have been the first time I became conciously aware of tensions between blacks and Jews, which was something of which I'd been cognizant, but not in any kind of adult way. It felt very Important to me, and very sad.

This is not that. (Helpful, aren't I?) This is about mammoth numbers that are hard to conceptualize. I remember we had something similar in our kitchen when I was growing up - a line of people, I think, with each one representing many more. This version, however, also plays with the art of the items. And it is compelling, even without (maybe especially without) knowing what the items are. In fact, some of these are beautiful.

Then you realize what they mean, and it is also sobering - even scary. They represent the horrifying volume of waste that we (people of the United States, specifically) create. But Chris Jordan, who is the artist, writes (click on "statement" in the upper right):

As an American consumer myself, I am in no position to finger wag; but I do know that when we reflect on a difficult question in the absence of an answer, our attention can turn inward, and in that space may exist the possibility of some evolution of thought or action. So my hope is that these photographs can serve as portals to a kind of cultural self-inquiry. It may not be the most comfortable terrain, but I have heard it said that in risking self-awareness, at least we know that we are awake.

I guess I find that the most compelling part of all.

--> This image (scroll down and click on "Running the Numbers" and scroll down again) is 60x92" and depicts 106,000 aluminum cans, the number used in the US every thirty seconds. Did you think it was the real thing?

Flickr Phenomena

So, through a link attached to a link attached to a link, I came across these. I love them. The first time through I loved the shapes the most - look at how many ways fabric can live! The second time through, a few days later, I saw the irony in some of the photographs. Today I see a wink-wink mockery of the humans. (I'm even seeing "humans" as a different life form!)

The artist is named William Hundley, and these are from a series on flickr called Entopic Phenomena. (Thanks to dooce for getting me there.)

My Inner Ear

This is the story of how my inner ear and a resident at Middlesex Hospital in Connecticut saved my life. Middlesex turns out to be a very respectable community hospital - they even won an award from Solucient, which sets the "benchmarks for success" in the industry - but I didn't know that when I was seen there in 1989. So, without further ado...

Once upon a time I was a young woman who was, as my family described me, a "life pig". I was incapable of turning down any commitment that seemed in any way interesting. I was a senior in college when, one day, I fell down in a new way. (Falling down itself was not unusual for me.) I was pretty sure I had fainted. Then it happened again. The doctor at the health center suggested, in the nicest possible words, that I stop using recreational drugs and alcohol and drinking a pot of coffee a day, and start getting at least 6 hours of sleep a night and eating regularly. I thought that sounded interesting, but did not feel that I could embark on such a drastic lifestyle change, though I did jettison the drugs and alcohol.

For a time I was fine, though I had a series of escalating and untreatable urinary tract infections. Then, in April, on my 21st birthday, my family came to see me and brought a bottle of wine. That night I had a simple partial seizure, though I did not know that name. All I knew was that I was gripped by nausea and tremors for almost 5 hours. The following day, I went to the health center again. They sent told me that it was most probably an inner ear problem, and to make an appointment at the hospital.

The Otolaryngology Department Ear, Nose and Throat Department at Middlesex had an opening the next week, and I marched myself down there. I underwent a series of tests of my ears. They were fine physically; there were no obvious growths or infections. They put me through a battery of hearing tests, all of which I passed with flying colors. In fact, my ears were too good for me to have the kind of symptoms I had.

Pause for moment of profound gratitude. The ENT doctor was a resident and had no reason to order further and expensive tests on me. But he did.

The following week, my friend Scoot took me to the MRI Associates in Hamden. (Click here for the basics on how MRI works.) MRI facilities were still a new phenomenon, but he'd had some experience with them - his father, nephrologist to the stars, had been involved in a testing MRI machines when they were first available.

[Apparently the magnet at his dad's work, which was housed in a trailer for the testing period, was so strong that it actually dragged employees' cars several inches across the parking lot during the course of a day. Fortunately, it came up in conversation, since all the folks who worked there had secretly had the unsettling experience of finding their car not quite where they had left it. Otherwise, there might still be haunted nephrology technicians in southern California.]

I went on with my life as I had been, pleased that it was almost the end of my senior year. Then at 5:30 one morning, the telephone rang. It was the resident from Middlesex, on his way out the door to catch a flight to Texas for a conference. He asked if I was sitting down. I said I was. (I was not.) He said the results of the MRI were back and "there's something growing in your brain." I lit a cigarette. I asked him what I should do. He said to call my doctor at home. So that's what I did.

I didn't begin to grasp the gravity of what was happening. My doctor at home got me an appointment with a world-class brain surgeon and I asked him if we could just put surgery off until I graduated, which was less than two weeks away. It seemed reasonable to me. He looked at me as if I had sprouted horns. After I had biopsy surgery to establish the nature of the tumor, I walked out of the hospital without permission. Within a week, I had taken advantage of my new age by going out dancing - there I was in a city, and I wanted to take advantage of it.

Eventually, though, it dawned on me. I would not be graduating. I would be having brain surgery instead. I would not be given a second chance at innocence; at stupidity, at risk. There would be no chance to say goodbye to my old life. The diagnosis cost me a kind of brazen daring. That rankled for years. But it gave me a chance at a more costly but more enduring fearlessness, with which I joyfully wrestle every day.

I had 8 weeks of radiation therapy that summer. It made me very sick. I refused to do chemotherapy; I did, however, graduate from college. I also quit smoking. About seven months after I saw the brain tumor team for the first time, I had a clear brain scan, which was wholly unexpected. (They actually called the radiologist to make sure they had the right patient!) Five years out, I wrote a heartfelt thank-you note to the ENT department at Middlesex Hospital. And for years after that I was healthy.

In 2003, everything changed again. But that's another story.

Blooms

These are the flowers that my mother sent to congratulate me for getting through radiation. Pretty!

(I would show you the brownies that my friend in the Heartland sent, but I ate them. My colleagues pitched in to help with that project!)

Yo-Yos

I'm done.

Only of course, I'm not REALLY done - in fact, I've been told that the radiation effects will get worse before they get better, but I am getting back two hours or more of every weekday. Given that I am very, very tired, having a little more time in my day is welcome.

Symptoms report:
The apraxia is as it was. I experience the word block effects at least a time or two every day; the key is getting enough rest (enough is about 16 hours a day, apparently, so that's tricky, but I try) and not obsessing about it. Me, obsess?

The hair continues to fall out. (Sorry, 614, didn't get a photo in time!) I now have some gel to soothe the places where the hair used to be, as they are sensitive and also itchy. Unfortunately, it stains. (The gel, not the hair.) I'll be using it at night for maximum impact. It's also apparently very good for chapped lips, which I tried today. I don't endorse the taste, but it did absorb well.

My balance is shot. This was explained to me as a function of my ability, or lack thereof, to triangulate my position. Balance depends on vision, inner ear function, and proprioception, which is "the relative position of neighbouring parts of the body". This is neither an interoceptive sense, meaning that it focuses inwards, nor an exteroceptive sense, which focuses outwards, such as sight and hearing, but "a third distinct sensory modality that provides feedback solely on the status of the body internally".

In a nutshell, if two of these three senses are working right, a person can balance on their feet. (Although you might not guess it from the number of times I've fallen, I am generally a successful biped - just clumsy.) However, it seems I do not have two out of three at the moment, as evidenced by my alarming level of imbalance over the last week or two. At this point I feel the need to hold tightly to a person or a railing when descending stairs or even steep ramps.

This is all probably because of the proximity of the corpus callosum - one of the foci of the radiation - to the optic nerve. (I'm also having some trouble focusing my eyes.) So I have neither the proprioception nor the vision, and grateful as I am to my inner ear (a story for another day, remind me) it is not enough.

The positive aspect, though, is that I am almost at the turning point. I think of it as a yo-yo, playing out over the length of the line, then hovering briefly before starting to climb back up. In a couple of months I'll catch it back in my hand, and we can see what has been accomplished.

And by the way, when a yo-yo sits at the bottom of the string and spins without going up and down? It's called sleeping! What a wonderful idea...

One After Today

I love it when I miscalculate! My last treatment is TOMORROW. That would be tomorrow, as in day after today, as in only one more day!

(There will be a tapering-off of symptoms commensurate with the time I have already completed, of course. Still.)

Joys Of Treatment

I have now been having radiation treatment every weekday since August 30. My last scheduled day is October 12, so I am in the home stretch. Every day that I go in next week, it will be the last day of its sort that I will have radiation treatment - that is to say, when I have treatment on Monday it will be the last Monday that I will ever have radiation treatment, and Tuesday will be the last Tuesday. Ever.

Unless, of course, something changes. When I completed my first course of radiation in 1989, the assumption was that I would never have it again, and look what happened. (No complaint, you understand, just observation.) Anne Morrow Lindbergh said, “only in growth, reform, and change, paradoxically enough, is true security to be found.” So I will await the other end of the paradox, and hope it does not come. (More paradoxes. Paradoxi?) At any rate, I will not know anything new medically until the end of December, although my level of exhaustion should abate somewhat in the next few weeks.

One of the joys of this treatment (the joys of cancer treatment are few and far between, but they exist) has been the small cadre of drivers that took me to the hospital every day. The group is all female, except for Mr. Husband, because I am more comfortable with women where my body is involved. For the last several weeks they have taken time off from their regular schedules and battled lunch-hour traffic to get me to my appointment.

I was worried about this part of the arrangements, I have to confess. Who wants to take the middle of their day to drive downtown and then to the 'burbs and back again, especially when it is never clear (due to traffic, radiation machine backup, or acts of nature) when the return will be? Who would voluntarily shoulder this when we all have more than enough already going on in our lives? When we have appointments and volunteer work and children and dogs and conferences and reviews and dental work?

But it has been a pleasure. From Sweet Sister C to Sarah Connor to my cousin M to a former colleague who said it would be a gift to her (to HER!) to be involved in the process, I have had the best of transportational care. And I got to see some people on a weekly basis whom I have gotten out of the habit of seeing that often, and others whom I have never seen that often. Even taking part of the day off with Mr. Husband to run to treatment and back felt a little luxurious, because we would grab lunch together.

And that is why, although I am more than happy to finish this course of treatment, and am more than ready to get those two or three or more hours of my work day back, I will - paradoxically - miss it.

Glazing Over

This picture is me. I am tired.

I took yesterday off work. I went to treatment and basically slept the rest of the day. Today I felt much better and worked until about 5 pm, when I hit some kind of impediment - it was like walking into a heretofore unseen wall. Can't see it, don't know it's there, but oh my god when I slammed into it there was no going on. I suddenly lost all forward momentum.

I was in a meeting with my case managers at the time, and I have a feeling that my eyes glazed over and I'm pretty sure I started drooling. Suddenly nothing I was saying made sense. I was in the middle of asking them for certain plans of action, but my plan of action? Gone - strategy, scheme, and all.

We came home about a half hour later and I staggered off to bed. When I woke up I felt better again, but I don't know how long it will last. I am not used to being laid flat by exhaustion, but there is simply no arguing with this.

The reassuring aspect, though, is that I don't really need to wonder if I am pushing myself too hard. Apparently my body just quits. And good for it - in every sense.