Hair

My hair is falling out. Not all of it, not most of it, so far, and I was prepared for it, but it is so evocative.

This time, though, I am in a much better place. I am a Grown-Up, for one thing, which is huge. I am not trying to compress 40-50 years into a few months. I celebrate my birthday every year as an enormous gift; thank you, Cosmic Muffin, for giving me another year. Watch me do it again! And then I do.

When I look at the photograph above I feel sad for the woman who did not know she was going to survive. She seems heavyhearted. I am relieved that, if nothing else, I am no longer haunted by presages of my own death.

(And also, I told my hairdresser to do whatever he wanted, since it might fall out soon, so he gave me a sort-of layered bob thing, and MY HAIR HAS NEVER LOOKED BETTER.)

Apraxia

For the last week or two, I have been affected by a disquieting phenomenon called apraxia. The kind I seem to have is apraxia of speech, meaning that although I know what I want to say, I cannot say it. I can hear myself getting it wrong repeatedly, but I cannot fix it. It seems to be happening more often, but the tension I feel about it probably doesn't help. I found this definition:

...also known as verbal apraxia or dyspraxia, [it] is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. It is not due to weakness or paralysis of the speech muscles (the muscles of the face, tongue, and lips). The severity of apraxia of speech can range from mild to severe.

My version is probably extremely mild - I do seem to get to the word I want eventually most of the time - but it is making me feel very crazy. (Most of the research that has been done on the condition is on developmental speech apraxia in children, which seems to be unrelated to the kind caused by injury to the brain, and so feels less than useful to me.) While Wikipedia defines apraxia of speech as "difficulty planning the movements necessary for speech" it feels to me like I can hear, see, taste and touch the right word, but it does not come out of my mouth.

The best example I've had thus far was when Mr. Husband and I were driving back from my treatment one day and I was talking about how many treatments I have left. The word I was reaching for was fourteen. I said, "so I only have seventeen treatments left. No, that's not right. I mean seventeen. No, seventeen." I could hear fourteen in my head each time I said it, but it come out seventeen. It was not at all comfortable. But I've been told that as long as I keep exercising the connections that need to be made between the thought and the word, I am unlikely to have permanent damage.

In spite of being well-educated and a bleeding-heart liberal, I secretly find things like this - situations that take one out of the driver's seat, so to speak, of one's behavior - extremely frightening. The ultimate example for me is Tourette Syndrome. I can imagine few disorders more upsetting. Yet I have known several people with it, and they were all interesting, intelligent, even well-spoken people. Still - if I was given a choice (wouldn't it be nice if we were given choices about these things?) I would rather lose my sight or my hearing than have a severe version of Tourette Syndrome.

Now what does that say about me? That I am a control freak? We knew that. That I am obsessive about language? We knew that, too. And also that back in 1989, when my neurosurgeon made a decision to forgo surgery because of the chance of slicing into Broca's Area or Wernicke's Area - well, that was a wise choice.

Brain Hiccups

Due, possibly, to a vicious piece of software that attacked Mr. Husband without warning, our little network was down for most of the evening and I am now too tired to post. You can look forward to an updated schedule and some fascinating information about various brain hiccups that I am having - but tomorrow. Sleep must happen now.

(See, Mom? I'm taking care of myself.)

Going Off In All Directions

As a result of my insurance shenanigans, I wanted to talk to Dr. Surya - who, you will remember, is overseeing my treatment at Hospital F. I've written before about how lovely the hospital is, with the coffee and tea in the waiting room and the floral art and the comfy chairs.

[I can't help but note that two days in a row last week a passage from Les Miserables played over and over the entire time I was waiting, but that's just me. I am a scoffer when it comes to musicals, and was enormously embarrassed when, as part of my job as performance critic for a Gannett paper, I had to attend and review the touring production. I cried my eyes out. Oh well.]

Dr. Surya was not in the office on Friday. That was okay, I said - he'd warned me that he would not be able to be there every day, and it seemed reasonable to me that I would see other members of the practice as well. Sweet Sister C (I just gave her a rap name!) was my driver that day, and I felt like as long as I had a family member with me to provide another pair of ears, I would be fine.

In hindsight I realize that no doctor could be expected to get up to speed in the space of time we had before Dr. Shrug, which is what I am calling the clod whom I saw, had to come in and pronounce his opinion on my condition. "Well," he said, "I'd say you have a brain tumor." Smirk, smirk. I think I just blinked at him.

I had no idea what to say. Options flashed through my mind: oh, so THAT'S what it is! or yes, I know that but I'm trying to find out if an expert, i.e. you, thinks the two are related or simply are you for real? And then he started talking about various things that I know to be untrue, like maybe I suddenly couldn't control my right side anymore but hadn't noticed. I looked at Sweet Sister C like, okay, this guy isn't going to be helpful, and she looked back the same, and we said polite goodbyes.

Then I went to the nurse and made an appointment to see Dr. Surya on Tuesday.

I mean, really. Don't treat me like an idiot. If you don't take the trouble to read my history, that's fine - tell me that you'd rather a) scan the chart before we talk or b) send me back to my own doc. Don't be condescending and a smartass. I don't need it, and frankly, it is a waste of my time. I am acutely aware of the passage of time just now, as (I'm wagering) are many of your patients.

In fact, most of my time is taken up with trying to remember who I am. I am so busy, and so anxious, that (like the fiance in Mrs. Smith's story) I am going off in all directions. Either the worry or the beamlets or some combination thereof is also making me confused a lot of the time, which is both infuriating and frightening. Just keeping my feet on the ground where they belong can be a struggle. Breathing helps. Also meditation. And chocolate, of course.

Speaking of chocolate, I will never go hungry again - my grandmother, wise woman that she is, arranged an enormous gift certificate for me at Biagio. As far as that goes, I am incredibly spoiled and loving every minute of it.

Unsafe At Any Speed

Sometimes I think I have more to do in my job as cancer patient than I have to do in my paying job. Part of the problem is that, as I have mentioned before, my radiation therapy appointment is smack dab in the middle of the day - 1 pm at a hospital about 45 minutes away. We often arrive early, but I would completely lose my mind if we only allowed that amount of time (a superstition which has been borne out already by unforeseeable traffic and other tie-ups) so we leave plenty of room for error. This means leaving my office at 12:15 at the latest.

Even if I arrive on the dot and the treatment begins right away - which, to the radiation techs' credit, is almost always true - it is rarely over before 1:30. I don't get back to my desk until almost 2 and I have not eaten, which I cannot skip now. Work resumes 2:15-ish, and I have to catch up on everything I missed in the noon hour, which means I don't actually start anything new until 3 at the absolute earliest. Most days I feel like I am starting my new projects about 4:30 pm, having spent the morning on projects already in progress and the mundanities of running my department. I feel like I am always behind, mostly because I am.

One thing that has helped me feel a little more independent through all this is that I can still drive myself to work if I'm feeling tired, and when I need to take the car in for my radiation driver (I have a bevy of wonderful women who join Mr. Husband in ferrying me back and forth) I can even pick them up. But now that is over.

It is a long and humiliating story, but suffice it to say that I probably should have taken myself off the road last year. I have always been a good driver, but suddenly this year I have had 4 accidents. The disparity should have drawn my attention, but I didn't really want to see it. It wasn't until our insurance company brought it up (basically saying that they would no longer cover me) that I realized that these little fender-benders had all occurred within a period of a few months.

Understand, three of them involved parked cars, and in none of them was I going more than 10 miles an hour. (As I think about that, I think it would even be safe to say I was never going more than 5 miles an hour.) For one of them I had a high fever and never should have been driving to begin with. (My fault nonetheless, but for a reason.) Still, four accidents in almost as many months? After over twenty years with maybe one, or at most two? It's hard to believe that there is nothing else going on.

Day before yesterday I did the right and very irritating thing of removing myself from traffic. I will talk to my neurologist and oncologist and therapist and other -ists I can find and maybe undergo some testing, if any of them think it will help me understand what is happening. Maybe all those years of never hitting anything just caught up with me all at once, but if it could be something neurological I will never forgive myself if I don't check it out. The saving grace of the accidents I have had, I now realize, is that I was moving so slowly that nobody was hurt.

So all you people who live in my neighborhood? It's safe to drive again. Go on - this won't last forever. Penny Prius would never forgive me.

Zzz...

Sorry, dear, not tonight. I cannot keep my eyes open. Either the schedule (work plus radiation treatments) is getting to me or the radiation itself is doing it. It doesn't much matter, since the result is the same.

Wearing Lipstick To Treatment

Previously suspected but not confirmed information that is now definite: I will be having radiation treatments through October 12, unless the dosage is adjusted. This is longer than I had most recently thought, but what I expected at some point earlier, so it isn't hard to make the change mentally.

One of the challenges about radiation treatment is that you do not know what it is doing/has done until months later. I often hint at the story about having to repeat brain scans after my doctors saw the SURPRISE! virtually complete disappearance of my 1989 tumor. I didn't have those scans until December; I had stopped treatment in August. The story has eclipsed the actual experience, and (for the record) I sincerely doubt that I was really sent back for another set of scans. I heard recently that the Godfather (my original radiation oncologist) tells it this way too, which warms the cockles of my heart and makes me feel like I have permission to stretch the truth a little bit.

I stretch the truth every day, if we are going to tell the truth at all. I say I feel good when I do not feel good, because I have to believe that I will feel good in the end. One of my friends who was with me during that terrible and clarifying first summer when I was barely 21 said (in a mock French accent) "it is better to look good to than to feel good." It was also the default, since I didn't have the option of feeling good. She was the one who taught me that if I was bald, I'd damn well better style my eyebrows, because that was the one chance I had at Presenting myself. And she was right.

Losing my hair the first time (hair of which I'd been very proud) seemed like the worst thing of all. I could not conceive of a world without me in it, but losing my hair was real - and it felt like a kick in the teeth. It was small enough and tangible enough that I could grieve it. (The fact that my hair did not grow back haunts me to this day.) So I started wearing hats, and I spent money on grown-up clothes for the first time and bought expensive perfume. I clarified and moisturized my skin and curled my eyelashes and put on lipstick to go to treatment. I understood that none of these preparations would protect me from death - but, to paraphrase John Derek as Nick Romano in Knock On Any Door, if I was going to die young, I was going to leave a good-looking corpse.

Of course, the irony is that it may have been these exact ideations that saved me. The value I suddenly ascribed to my life may have been some part of the key. Or maybe a Good Fairy flew over and charmed me, or a deity of some kind reached out His or Her hands for me, or some hairy thunderer or cosmic muffin bellowed for me, or the audience clapped their hands. I do not know, and do not pretend to be able to discern. From now until (I'm guessing) December again, I will wait and hope. And to the best of my ability, believe.

Incandescence

It looks like lightning. Bursts of brightness, gleaming incandescence - at first it scared me. I thought must be hallucinating, or worse, that the radiation beamlets were damaging my eyes. But it only happened once, and the people in the radiation unit have been wonderful about anticipating my needs and questions, and I forgot about it.

And then it happened again. I opened my eyes right away, and I could still see it. About a minute into the second part of the treatment, silent fireworks go off behind my eyelids. I look around, in the very limited way that I can when I'm in the mask (eyes up, right, down, left) and cannot see a source of the light. I figure this is just a strange emission from the machine as it works; maybe a shadow (?) of the real beamlets, which I know are not visible. I determine to ask Dr. Surya on my weekly visit to him.

This is what he told me: scattered radiation stimulates the optic nerve and triggers what looks like bright light. Apparently people see all kinds of color and patterns. So far I have seen white, yellow, and blue light. Sometimes it is like a strobe, other times more sustained, but never more than a fraction of a second. In the last few days the light has been moving, right to left, which isn't surprising because that is the path the machine describes around my head.

But it isn't there. It is loose radiation tapping my optic nerve on the shoulder, for lack of something better to do.

Dr. Surya says he has never had a patient who cared much about this, and is surprised by my interest. I cannot imagine not being interested. This is what will keep me invested in the daily trek (and it is a trek, forty minutes out there to the suburbs in the middle of the day to lie in a machine for half an hour and another forty minutes back) - what wonders will the beamlets share with me today? What color, what shape, will I see them at all? Like mermaids or pixies or other ineffable creatures, they engage my curiosity.

Barbs And Spines

I know this is old news by now, but I cannot stop thinking about the new pill bottle design at Target. The designer, Deborah Adler, basically asked why it was that we cannot actually put all the necessary information onto a regular bottle, and when she found out why, she fixed it. (There isn't enough room.) While she was at it she stopped to fix the problem of whose the medication is (color-coded rings for each family member) and made sure the print on the label was actually big enough to read. Seems simple - but someone had to stop the process for long enough to notice it. Of course I don't get my prescriptions at Target, but maybe the idea will spread.

People who figure out stuff like this are truly inspiring to me. Like the first person to look at an artichoke (one of my very favorite foods) and think, "gee, that thing with the barbs and spines on the outside sure looks like it would be tasty!"

Something Precious To The Earth

(http://www.mainlesson.com/display.php?author=brown&book=saints&story=werburgh)

I do not have the name of the person who quoted Mary Oliver to me in the comments; her words brought me back to poems I hadn't thought of in a long while, and I am grateful to (her?) for the direction.

Wild Geese

You do not have to be good.

You do not have to walk on your knees

For a hundred miles through the desert, repenting.

You only have to let the soft animal of your body

love what it loves.

Tell me about your despair, yours, and I will tell you mine.

Meanwhile the world goes on.

Meanwhile the sun and the clear pebbles of the rain

are moving across the landscapes,

over the prairies and the deep trees,

the mountains and the rivers.

Meanwhile the wild geese, high in the clean blue air,

are heading home again.

Whoever you are, no matter how lonely,

the world offers itself to your imagination,

calls to you like the wild geese, harsh and exciting --

over and over announcing your place

in the family of things.

I love this poem, but I have felt for a long while that another Mary Oliver piece (below) speaks of me more revealingly. This is how I hope to face my death, however far away it may be - there is no statute of limitations on amazement. I will not forget again.

When Death Comes
When death comes

like the hungry bear in autumn;

when death comes and takes all the bright coins from his purse

to buy me, and snaps the purse shut;

when death comes

like the measle-pox

when death comes

like an iceberg between the shoulder blades,

I want to step through the door full of curiosity, wondering:

what is it going to be like, that cottage of darkness?

And therefore I look upon everything

as a brotherhood and a sisterhood,

and I look upon time as no more than an idea,

and I consider eternity as another possibility,

and I think of each life as a flower, as common

as a field daisy, and as singular,

and each name a comfortable music in the mouth,
tending, as all music does, toward silence,

and each body a lion of courage, and something

precious to the earth.

When it's over, I want to say all my life

I was a bride married to amazement.

I was the bridegroom, taking the world into my arms.

When it's over, I don't want to wonder

if I have made of my life something particular, and real.

I don't want to find myself sighing and frightened,

or full of argument.

I don't want to end up simply having visited this world

Floods

My focus is so tight sometimes that I want to move from pin-spots to floods. One illuminates something very specific, very tiny. The other is a deluge of light - every corner glows. In a former life, I did some lighting design, and I loved it. There's nothing like painting with light. But just when I was getting good at it, I was diagnosed with my first brain tumor. Epilepsy and 40-foot scaffolding do not mix well. By the time I was seizure-free, I'd moved to the literary side of theater and then to a different career entirely.

As soon as I started writing tonight, I became nostalgic for all the terms and paraphernalia of lighting. And I realized that it is something tangible that I know how to do. It's been bothering me a bit lately - that "at my age" (whatever that means) I have nothing real to show. I haven't written a book or a play - almost, at least three times, but no. I haven't broken a record in anything, I haven't done anything dangerous and exciting (at least not on purpose), I haven't walked on my own figurative moon. I haven't taken that one small step for humankind. All these things seemed important to me, but not as important as noticing the world around me. Somehow the achievements ended up in the back seat, and I am a little bit sorry.

I'm thinking about it because the social worker at the hospital asked about my living will. By the way, she was, for the record, very nice, and I admire her courage and willingness to partner each of her patients through those shadowy doors. She sees someone like me once in a proverbial blue moon. Anyway, I do have a living will, and a durable power of attorney, and so does Mr. Husband. So should you - there is no excuse not to, so I don't want to hear it. It isn't expensive, I just gave you the links to the forms on line, and it prevents untold tragedies. If you have children, shame on you for not doing it sooner. Do it now!

This is not some kind of hint - I feel fine, though a little run down by adding the radiation therapy to my daily schedule. Not to worry. Today the nice technicians were back, and I talked to Dr. Surya about getting them to not play the horrible music in the machine while I'm in there, and for the second time I really DID look like I had leprosy when I came out of the treatment room, and what could be better than that?

Here's a flood for today.

Taken on our Alaskan honeymoon

Not Yet Terminated

I'm not sure I should be typing yet, so be warned - if the pain comes back I am not going to grin and bear it. Unless I do, which would be like me, to be honest. But I am really trying to be more respectful of my Corporeal Being.

I had my third treatment at Hospital F this morning. Some things about it were very strange. For example, the two techs who worked with me this morning were new to me, but did not immediately introduce themselves. They did eventually, but not at first. Also, I've been clasping my hands in front of me during the treatments - today I was told that was inadvisable and might make me reposition my head, which is VERY BAD. (We're talking a millimeter, here, at the most - I know because I get to wear the mask. The one they snapped on to my head this morning with no warning? That's the one.)

They gave me a blanket today, like they do every day because the radiation room is freezing, and they told me that they would put my name on it and I should ask for it every time. I got the impression that this was to make sure that nobody got anyone else's cooties, which I suppose is advisable, especially considering the alarming number of nosocomial infections these days, but suddenly I felt like I was soiling their table by lying on it.

Honestly, it was like going to an alternate universe. Where the original techs were kind and friendly, these ones were all business. They didn't touch me, except to help me lie down. They didn't talk to me, or tell me what they were going to do next. There was no warning when the table was going to slide in. No countdowns - even in two days of treatment, I've gotten used to hearing how much time is left. They seemed extremely competent, but at what price? And here's the weirdest thing: the original techs were black. These ones are white. It's like some crazy reversal of everything, including skin color.

After the unsatisfying interaction described above (which happened while my friend Sarah Connor, who drove me to the hospital today, read her book in the waiting room) I was called in and questioned by the social worker. I do believe she was trying to be helpful. But after a few minutes of talking about my life, about the ways I take care of myself, about how I have struggled with mortality and accepted that I will die one day, maybe sooner than I originally planned to, and that I am always working on being okay with that, even though it may not happen, she suggested that I attend one of their support groups.

I guess I must have given her a Look, because she laughed and said, "I'm just glad to see you. I'm just glad you're still with us." Which was, in case you're curious, the right answer.

Short Message

Sorry, those of you who come here regularly - I don't know if it's exactly carpal tunnel syndrome, but it hurts. I'm going to rest another day. When I can turn my head without shooting pain, I'll be back. Thanks for understanding.