A Better Day Today

Today I did not feel like that character from L'il Abner, the one who was always walking under a rain cloud:



I did sleep last night, and woke up with a headache. I thought it might go away once I got up and moving -- it sometimes does -- so I tried that, turned the TV on, was taking my meds, and on TV, they mentioned today's date: December 17. Today is my 17th re-birthday. I had my brain surgery 17 years ago today.

It was my first smile of the day, a big one.

I made some scrambled eggs, and took some excedrin, the kind with caffeine in it.

It snowed last night, no more than an inch, but changed to rain early this morning, so I had some heavy gunk to scrape off the car, and I was thinking how last year I never saw snow, because all of it happened while I was bedridden. Huh.

I got to school and started chattering away to the SCM and thought man, that caffeine is good shit. Another smile.

I started typing and realized that my neck did not hurt today. Smile.

I looked up from me desk and saw the pillar six feet in front of me that blocks my view and thought that in the old library, I would just move the furniture. And then I realized that my desk is not nailed down, and neither is the photocopier, and if I switched them, I would be able to see the whole damn library, plus out the door and down the hall.

Biiiig smile.

Now, this is not without complications, because it seems that we now need papal dispensation to move the furniture in our own rooms, but since I need to get the phone and computer outlets moved, the principal has to come and see what I want to do and give his approval. This may be a challenge, but damn, I feel like I'm at least going in the right direction.

So not a bad day, altogether.



WATCHING FRIENDS :: ENTRY #1941
READING: Slam by Nick Hornby

Miles to Go

Not miles, maybe, but I still have to get my lunch and breakfast ready for tomorrow morning. I just got back from physical therapy and really, I am too old for this shit. I just feel a bit worn out, but it's not bad, really. Some of the exercises were very hard, but I was surprised at some of the ones I could do.

The Hubs did indeed order new glasses last night, and said he was surprised at how narrow the glasses are now, as in, so little actual glass in front of his eyes. Well, yeah, dear, no one else but you is still wearing aviators, and those suckers have lots of glass in them. He ordered progressives so he won't have to take off his glasses to read, so we'll see if he's willing to take the few days to get used to them or if he hurls them across the room after the first hour.

I woke up very, very tired, and have remained so all day, and hungry. How nice that tomorrow is the end of the work week here. On Friday, I have another day of people doing things to me (as I did on Monday), starting with the podiatrist, and then getting an eyebrow wax, and then -- I hope -- finally getting that other tattoo. This appointment is a little earlier -- 2.30 -- so with any luck, the artist won't be up to his elbows in someone else's huge work at that time.

Did I mention that I'm very happy with my new haircut? Perhaps I'll produce a photo, if I can. Most amazing of all is that I appear to be able to reproduce the style that I walked out of the salon with. Yes, I got the "product" he used -- but he used two, and refused to let me buy the more expensive one, said the other one would do me fine, and it has -- and a bigger hairbrush. I also replaced my blow dryer, which was on its last legs anyway. I guess this would look like short hair to most people, but since I've had very short hair before, it doesn't look that way to me. It looks like my last haircut, but without the bulk, and so far, without the frizz. I could not believe that it never puffed up at all yesterday, even though it rained all day. And when I put on a baseball cap to go out in the rain after school, I didn't get hat-head. Clearly, a magic haircut.

After lunch, two kids just came in to use the computers with a pass from ... K. This tickles the kids here no end, when they bring me a pass signed by "your daughter [giggle]" Or they love to tell me all day that they were just in a class and the substitute was "your daughter [giggle]." Sometimes they are fond of telling one or the other of us that she looks just like me, to which we always respond that they should see her sister, who is the one I have traditionally been told looks just like me. I don't believe either one of them does, but so it goes.

On a more serious note, a word about Senator Kennedy and his condition. In November, 1991, when my brain tumor was diagnosed, they said they couldn't tell exactly what kind of tumor it was until they saw it. (This was not strictly true, I later found out, but I digress.) I was told, though, that it was one of three kinds of possible tumors: 1. an acoustic neuroma, which is never malignant, but the removal of which would leave me deaf in one ear; they told me this was "unlikely" because of the size and location of the tumor; 2. a meningioma, which is sometimes malignant but very difficult to remove, because this is a cancer of the membrane that covers and wraps around the brain, and the tumor itself can grown into the brain; or, 3. a glioma, which would always be malignant and always be difficult to remove. I was totally rooting for the acoustic neuroma, which is what I turned out to have. (Years later, I read the pre-surgery report which stated firmly that it was an acoustic neuroma, but they wouldn't tell me that ahead of time just in case it turned out to be one of the others, although they knew for sure it wasn't.) Anyway, as soon as I saw the word glioma in a news report, I knew this was not a good thing.

I remember, of course, the death of President Kennedy and Senator Robert Kennedy, but I also remember hearing the news reports of Ted Kennedy's plane crash and the Chappaquiddick incident. The plane crash happened in 1964; I remember hearing about it on the news while we were in the car driving up to visit family in Massachusetts. The Chappaquiddick incident happened in July 1969, the day before the moon landing, so I would have been home. I remember that week as very, very hot, and my father finally conceded to using the air conditioner that had come with the house but that we had never used before; we all spent that week bundled up in sweaters in front of the TV to get any news of what was going on in space. So we heard about that tragedy, too.

I am so sad for him and his family. But I don't know if this qualifies as the same kind of tragedy that has befallen this family so many times before. Many of those were odd, unexpected, unpredictable, unavoidable (except the scandals.) But illness, unless it's something incredibly rare, just happens, happens at random. Each one of us has to succumb to something at some point, and there are few illnesses of this magnitude that are in our power to prevent.

So that's tonight's serious. I need some couch time before I tackle the kitchen stuff.


WATCHING FAMILY GUY :: ENTRY #1759

About the Tired. And All That.

As the empress suggests in her comments, The Tired is most likely due to the Crohn's, or to the medication for Crohn's, or a combination of the two. I don't think it's because of my night-time sleeping patterns, because let's face it, I've had insomnia since I was twelve, and I can't pin that on the Crohn's.

After school yesterday, I did a few errands. I picked up my glasses (which seem fine), went to Walgreen's (which was out of my size hearing aid batteries, and I beat it out of there when I saw someone I knew up one of the aisles and I didn't want to get bogged down in conversation), and to the supermarket. The walk through the supermarket is not exhausting in and of itself, because I'm hanging onto the cart for support, but it's always hot by the checkout -- I took my coat off -- and then walking out to the car with just my two bags, I thought "Oh. I'm a completely different person now."

Then I realized that this was not so much a huge revelation as it was a "here we go again." Despite what many of us think, that we are who we are and always have been, every so often we change into a whole other person, the way a caterpillar becomes a butterfly. (Which sounds so lovely, but trust me, my transformations are not as poetic.) I am not troubled by this transformation, I just hadn't gotten it in my head yet that here it was again. But even as I huffed and puffed my way to the car, I knew that this was different from "last time," which was, of course, after the brain surgery, but in my next thought I realized that I've undergone many other changes since then, since the brain surgery 16 years ago.

Of course we change naturally over time, puberty and all that crap, and no one will deny that being pregnant and giving birth changes your body. Even so, I think when my kids were little, I did not so much feel changed in who I was. I was still always in overdrive. I did everything I wanted or needed to do. I worked, I took care of the kids. I cooked what needed to be cooked, and cleaned what absolutely needed to be cleaned. I took care of everything. I was tired all the time, but never really tired enough to keep me from doing what I needed to do.

Brain surgery shifted my paradigm, so to speak. I was forced to be someone other than that get-everything-done person, at least for a period of time. People took care of me on a grand scale, and I had never really experienced that before. I liked to say that I learned that it was okay to let other people do that, and to let other people take care of things I had always done, but in truth, that was a short-lived lesson. As soon as I was able to, I went back to being who I was, but with modifications. I did regain some strength and stamina. I went back to managing multiple Girl Scout troops, to working long hours at school on extra-curricular activities, and on full-time with my kids. The real change in me after the brain surgery was that I became much more thoughtful about raising my children, and listening to what I said and didn't say to them, and learning not to sweat the small stuff with them. To pick my battles. Having brain surgery made me a much, much better mother, because I had been given a glimpse into an alternate world where I might not have continued to be their mother. Although on the whole, I would prefer not to have a hearing loss, I always think of the brain surgery as generally a positive thing that happened to me, not a negative. And now you know why.

Since then, I have been experiencing the Wonderful World of Menopause, which brings its own changes, most of them really annoying. Combined with the WWM are the natural changes that come with aging. When my menopause adventure began, I was 42, and had just taken a car trip to DisneyWorld with my kids and my sister and hers, and I had done all the driving, all the planning, all the managing. I was a freaking dynamo, and then all this other stuff started, and it was hard adjusting for a while, especially to the mood swings. But then things changed when my mother became ill, and Shirl Is Dying took over everything. Certainly the hardest period in my life. I did not adjust to well to all that, had constant stomach pain, and ultimately went to therapy, which helped a great deal. During this time, I developed high cholesterol, high blood pressure, and god knows what else, and I was in a continual state of overdrive. And it only really ended when Shirl died, which kicked off another whole cycle of change and adjustment and new-me-ness, which had barely gotten started before Jack died nine months later. I was an orphan. I learned to live my life as an orphan -- I know that sounds goofy and overdramatic -- but it was a change and had to be dealt with. When your parents are dead, you are the adult, and there is no escaping from that.

And there was a kind of free falling feeling. Overdrive was no longer my required mode of being. I no longer had to spend every day after work running to help my parents, or doing something for my kids. My parents were dead and both of my kids were away at college. Life took on a much easier, more pleasant pace. This was a very peaceful period in my life. I finished going to therapy. This period lasted two years, the two years that both kids were away. Then they came home, one and then the other, but still, things were okay because having adult daughters who are your friends is so cool. Yes, there are moments, and dishes in the sink, but time will take care of all that. I didn't need to be in overdrive, just drive, during this time. My time was my own and I could do what I wanted, sometimes with a buddy along.

And now. Overdrive is out of the question, of course. Drive would be nice, and if it's not there most of the time, well, hey.

At some point recently, maybe even before I got sick, I had an interesting series of thoughts. I have been married 30 years, we have lived in our house 20 years. I am 55. I will live another 20 years, or maybe 30. I'm likely to get to 75, unlikely to go past 85. It was the first time I thought of my lifespan as having a finite end. It was a little bit of a disturbing thought. The last 20 years -- or 30 -- went by so fast. What if all the years I have left go by the same way? I was starting to think of my life and what's left of it as being very short. And then I got so sick, and then I got my diagnosis.

The time ahead of me suddenly does not seem short. It seems okay. I don't know why knowing I have a chronic disease for the rest of my life changed that, but it did. (Although I still have to wonder about certain things fitting into that timespan ahead of me, like grandchildren and watching them grow up. Where the hell are my grandchildren already? My parents and grandparents both had grandchildren by the time they were 55!) When I am Tired, I just am; I can't do anything about it, so why should I despair that I can no longer function in overdrive as I once did? I'm not even supposed to be in overdrive anymore; I spent so much time taking care of every detail for the last 35 years that they're just all taken care of. I'm not quite as sharp as I've been, but I think that's also either the Crohn's or the meds, and that will come back when I've got things more under control medically. And I am not sweating small stuff. At. All. Why bother? Why care? Don't worry, be happy. You know?

So even when I'm Tired, I'm okay. Today after school I'm going to get my nails done, and then go home and get K and we will vote and then pick some stuff up for dinner. Sounds like just the right plan for me.

WATCHING GILMORE GIRLS :: ENTRY #1672

A Very Merry Re-Birthday to Me

[copied from dland]

**In 26 days I will be 50 years old**

A short happy entry today: it is my re-birthday, and I am 11 years old.

Not to be confused with the real birthday, the BIG one, coming up in just 26 days. (See above.) The re-birthday is the day I celebrate that I had a brain tumor cut out of my head and lived to tell the tale.

Eleven years ago. Holy cow. More than half out of the lives of either of my children. They have no clear memories of me before hearing with both ears and being able to walk a straight line. But really, why would they?

Enough, enough. It is really very cool that I get to celebrate this one each year, and that as a result I get to celebrate the other one, too. That's all!


ENTRY #30

I Believe That

[copied from dland]

It’s almost eleven years. It all started around this time of the year, autumn, eleven years ago. It sounded like I had an ear infection all the time, a rushing sound in my right ear. Actually the sound had started during the summer, but sometimes I could make it go away. By October, I had it all the time, and sometimes the throbbing noise. Not a throbbing pain, in fact, no pain at all, but the sound of throbbing in my ear, especially when I would lie down at night to go to sleep. Sometimes I would get up and watch TV, because the sound of the throbbing in a quiet room would drive me crazy. When I could hear the throbbing, it would drown out other sounds, but in and out, in and out. It was like a heartbeat, and whenever it would beat, I could hear nothing else.

It was the throbbing that finally made me ditch the allergist who was treating me for an ear infection and go to see an ear specialist. There were tests, yada yada yada. It was the Friday before Thanksgiving that I went to get the results and while we were waiting for the doctor to come in, sister and I looked at the x-ray in the light box on the wall. There was a silver spot about the size of a quarter, but not quite round, right in the middle of someone’s brain. I saw my name on the x-ray and said “Oh shit, they’re gonna make me go back and get another x-ray. There’s something wrong with that one. There’s a big spot on it.” She didn’t say anything, but I think that was when she figured it out. But not me.

So he came in, the doctor, and took my hand in one of his. Odd, I thought. He said, “It’s not good.” I looked at him. He said, “It’s a brain tumor.” I thought – maybe even said – “You mean that silver thing in my brain is really there?” He nodded. I said “Can you get it out?” He said “Yes.” So it was okay.

I went to see the neurosurgeon the next week, the Tuesday before Thanksgiving. He said it was a tumor, one of three possible kinds. One, he said, a glioma, always malignant. I didn’t want that one. Next, he said, a meningioma, maybe malignant and maybe not, but taking it out would have consequences. I didn’t so much want that one either. Remotely possible, he said, was an acoustic neuroma. Never malignant and would leave me deaf on one side, maybe a little facial paralysis. I was rooting for the acoustic neuroma, even though he said they almost never happen as deep in the brain as my tumor was. “I can have it done after the holidays, right?” I asked. “After Christmas?” “No,” he said.

Nasty day the next day, all the pep rally crap going on in school and me thinking that everything I saw I wouldn’t ever ever see again. I was having Thanksgiving dinner at my house on Thursday like every year, and I figured this was going to be my last one of those, too. Cousin was coming in from Colorado with her new husband. Maybe I wouldn’t ever see her again either.

I came home from school, half day before a holiday. The kids would be home a little later. They really were kids then too, only ten and seven years old. Maybe they wouldn’t even really remember me when they were all grown up.

I sat there, wondering about all kinds of shit. I thought, this will be okay if I can only think of something to hold onto, something that I can plan to do when this is all over. Something that would make me happy.

I said out loud to no one else there, “In April, when spring vacation comes, I’m going to DisneyWorld.” Just sister and I, just the two of us. No kids. “I’m going to DisneyWorld.” And then I was okay.

Went over that afternoon with the kids to see Jack and Shirl, and cousin, and all the assembled family, including my two girls and my sister’s three kids. Nephew #1 was a senior in high school then, in my high school, and going through a lot of crap times. Everybody in the room was depressed except for me. They weren’t sure that I was as okay as I seemed to be. I assured them all that I was fine, because I was going to DisneyWorld. There was a heartbeat’s worth of pause, and then Jack said he’d pay for us to go. So then everybody was okay, pretty much.

On December 17 I went to the hospital at about six a.m. Husband and sister came with me, and stayed while they got me all set up before the operation, with tubes sticking out of everywhere and hooked up to all kinds of equipment. Then I was in for about eight hours while they cut a hole in my head about an inch behind my right ear and took out what turned out to be a rather large acoustic neuroma that was leaning against my brain stem. They almost never find them there.

I could write all kinds of other things about my surgery, and in time, I probably will. It seems pretty bizarre that after being exposed to the wonderful Grandpa Sam for 18 years, and being raised by two goofy people with solid values, and after dedicating myself to reading and literature and learning and writing, not to mention an amazing abundance of popular culture, the defining experience of my life is that one of my nerve cells went nuts and grew a great big lump right in the middle of my brain, and someone had to cut open my head and take it out.

For now, what made me write this just today is that I came across something I wrote when I was in the hospital after my surgery. I was in for about a week altogether; I came home the morning of Christmas Eve, the 24th. I was in surgery on the 17th, and spent the next two days in the recovery room instead of intensive care. After that I went to a private room, so I wrote this on one of the days I was in there. I hardly slept when I was there, so I may have written it in the middle of the night. I had taken with me to the hospital a steno pad on which I had made notes about the surgery before hand, like what the doctors said to me, schedule dates and times, and so on. Now I was also writing down when they brought me pain medication, because I wanted to make sure they brought the next dose when I was supposed to get it. But I wasn’t in an awful lot of pain from the surgery. It was that they were taking me off the high does of prednisone, and each time the dose went down, I was being torn apart by muscle aches, mostly in my legs and back.

By this time, it was clear that I wasn’t ever going to hear anymore in my right ear, and that the right side of my face was never going to move of its own free will. But my face hadn’t “fallen” so I didn’t look all that grotesque. They were coming from physical therapy to teach me to walk without banging into walls all the time, and to go up and down steps. I remember that one afternoon Jack came to visit when I had to go to PT and he watched while I tried without much success to go up and down two steps. I think if I had to watch my grown child do that, I couldn’t.

So here’s what I wrote in my steno pad, and kept. A couple of years ago I typed it into a file on the computer so I wouldn’t ever lose it. At the top of the page I wrote

I believe that

-I will have some bad days. Most days will be good.

-On bad days, my neck and scar will be stiff and sore. I will have eye sutures removed. I will feel pain, and discomfort, and nausea.

-On good days I will have some stiffness and soreness but probably not much pain. I will not walk into walls or fall down or step on the cat.

-In February I will do laundry again and I will start to prepare to move around the kids' rooms.

-I am very happy that I am alive. I want to see my children grow up, and I will. I still want to go to DisneyWorld.

- It is okay to cry on bad days.

- Life is not all black and white. Mostly it is light gray.

- When I have pain-killers I feel pretty good.

- It is okay to feel good whenever you can.

- Sometimes I dribble.

And I still believe it, all of it, after eleven years.

ENTRY #16

Two, At Once!

[copied from dland]

As Bullwinkle said. Wanna see me pull a rabbit out of my hat?

Two entries on the same night. The first one, whiny. There's really no other way to say it, no excuses. Whiny whiny whiny.

Now, more than anything, intrigued. As Mr. Spock would say. Really, if I hadn't been raised a television junkie in the 1950s, I'd never have anything to say to anyone.

After my first entry, about an hour and a half ago, I thought I would spend some time reading other people's diaries, or blogs, or whatever they should be called. Here is what I learned:

1. Some people are really really good at this.

2. I am not so very good at this. I'm working on it.

These seem to be the two essential truths. So I checked to see where they got their guestbooks and counters and all those neat little tricks, and I added a guestbook and a counter to my diary and now it looks so cool.

I guess now I should really work on the writing.

I like to write and I have always written. My earliest efforts at communicating with a mass audience and in written form were when I scribbled with crayons in my mother's hardcover Norman Mailer novels. I thought that if I wrote in the book -- literally -- I would be a writer, I would be writing a book.

Fast forward. For a very long time I thought that being a writer had to mean that there were people somewhere reading what I wrote. So when I wrote stories or novels or whatever, and the only people who read them were my husband and my sister, I was pleased with what I wrote, but felt I hadn't quite gotten it.

So about twelve years ago -- hmm, is that when that pesky old brain tumor started growing? -- I decided to write for myself. No reason, except that I wasn't exactly pulling in an audience, and I guess I had to write. I convinced myself that I was just writing everything down (by then, typing everything in) so that I wouldn't forget it all. Remember, somebody was about to drill a hole in my skull and expose my soft little brain to the open air, just to pull out that little lump of annoying nerve tissue, and it occurred to me that maybe I wouldn't remember my stories at all. This way, I guess, I could have read them as if they were new, the same way I would have had to re-read Shakespeare and Steinbeck. Anyway, happy ending, only the tumor got pulled out (along with all the hearing in my right ear), and I did tend to wobble around a bit and walk into walls for a few years, but all in all, thinking and memory remains in ... in ... intact, that's it.

So I've been writing for me, to save what I want to remember, or because I had no other choice but to write. For everything I've written in these last ten or eleven years, I am quite certain that I have no intention of showing any of it to anyone ever. Unless, of course, my therapist twists an arm hard.

And then I started doing this diary thing, for just about a week now. And I have written every day (I think), and I'm writing mostly because I have to. But if I have no intention of showing it to anyone, then why don't I just type it out and save it on my hard drive and password protect the file? Why do I have to keep a diary site, and tinker with the colors and fonts and links and check the code every day to make sure it's just perfectly what I want it to be?

If I don't expect anyone to read it, what the hell do I need a counter and a guestbook for?

Again, who would bother even to care about little insignificant me? Looks like the whole attraction of this project is to see if anyone reads it, cares at all, will notice that I even bother to do this. Considering my previous entry, it would certainly be best if my colleague at work didn't stumble across it.

But I will check my counter and my guestbook and see what happens. How does anyone find anyone else's diary to read, anyway? I'm not even sure how I found the few that I've started to read.

Fascinating. It's like having a penpal who doesn't even know she or he is writing to you. So far ... intriguing. Yes, Spock; intriguing.


ENTRY #9

Health: What Is It Good For?

[copied from dland]

I just got off the phone with an insurance company nurse, who called from Minnesota (to New Jersey) to quiz me on my condition so that I can qualify for long-term care insurance, which seemed like a good idea of something to get. So she asked all the questions one might expect, you know, the kind of test that if you get 100 on it, you're probably already dead. But I was listening to myself answer all her questions ("no, no, no, no, no") and it occurred to me that I seem to be in way better shape than I generally think I'm in.

Okay, I wasn't all that truthful about the weekly exercise routine. Maybe I told her what I PLAN to do, instead of what I really do, which is basically not a damn thing. What I described was what I did during a six-week period this past summer, when I joined a gym and actually went, until the ragweed bloomed and I was nauseous and congested for about a month. But I'll be going back to the gym any day now. Really, I will.

The trick was this: almost all of the nurse's questions involved that magical period of time known as "the last five years." And since the imminent breakdown of all my body systems that appeared last spring turned out to be all stress, and actually went away the very day after my mother died following an eight-year illness, I don't think that counts. It didn't fit into any of her questions, anyway.

She did ask if I'd had any brain disease (encephalitis, tumors, etc.) And I said "In the last five years?" "Yes," she said.

So I actually never had to tell her -- no lying, no deception, I really am a remarkably honest person, not counting the exercise thing -- that I had a brain tumor removed from right out of my head about 11 years ago, and that I'm missing a chunk of skull about three inches across as a result of that surgery, and I'm totally deaf on one side because they had to snip out a significant section of my hearing nerve, while they were at it. It was a tumor of the hearing nerve, so I just got to end up being half-deaf and with a hole in my head as a result, instead of being actually dead. So all in all, a good deal for me.

Can you believe it? This nurse on the phone thinks I am the very picture of excellent health. And me with a head hole as big as a racquetball. Huh.


ENTRY #7