Frabjous Day!

Three days into her new medication, Torch volunteered that "I feel better this morning." This is huge, since the last two days were all downhill.

Both her walking and her speech are noticeably better. We're not taking anything for granted here, but this alone is enough for celebration.

[Added after a couple of you had commented:]
Torch has asked me to clarify that she is still struggling with the same symptoms - no miracle cures here. Also that there are new symptoms, like dizziness, that the medication may be causing. This will take time.

Big Or Small

Where I look, there is a mighty small world for me. I am unable to reach past the space I see - there are diminutive words of mine, and they are tiny. It turns out to define the corner.

The front window holds the recliner and it is the only article of furniture owned by me, and it occupies that spot and that which I have inherited. But as a result, I can watch the world. I see the shadows shift in the light; brightness and softness hang above me. More than anything I choose the aspect, I think.

From a certain point I can see. Two or three very ambitious handymen measure out the distances from my window, ever so carefully adjusting the points of the porch, and they come out perfectly. When they return I am impressed but do not take it further - I am observing, not part of the scene.

Of course, I see the most from La Roca de los Siglos. The King Emmanuel Baptist Church meets once a week and they are wonderful, but the Spanish Pentecostals begin once the Baptists are finished with their services. The exciting part, read and translated far beyond the days known, is THE KING OF ALL KINGS! And it is the basis of VERY stirring days. Which I cannot even understand.

I just wish I could get it myself.

Packing

I have been thinking about one strangely bizarre job I had when I was just eighteen. For some reason I demanded that I wanted a "real" job. I had worked at a number of baby-sitting and office jobs, and insisted that I could use my typing skills. So I interviewed for, and received, a temporary office job for the summer. I think I called it secretarial skills and was paid a whole $5 an hour.

In retrospect, I cannot imagine why in the world I wanted this position, but I did. I felt very important as I showed up every morning at the office. There was a huge building on the first floor full of packing materials; I had nothing to do with that. The second floor, however, contained the salespeople, all of whom put in charges for their costs. My office had a 20-line switchboard. With the exception of the boss (whose name I think was Rocco) all the calls came into the switchboard. Which I ran.

The way it worked out, I learned from the salespeople, was that certain types of packing were relevant. For example, if you had prepared flats of meat - something "kinda bloody" - you would want to leave extra space for ground chuck, but if the meat was steak, it was less likely to require extra space. And in some cases, well, you'd want to be aware of more juice in the mix. It just made sense that way. Logically.

Of course, all we had on site were the styrofoam trays. The actual meat never came down to where it was packed, but that's how they talked about it. They didn't see it in their mind's eye.

I never had that kind of work after that summer; I was in a number of shows and an equally large number of random job-ins, and stayed connected to the theater. At the end of the summer I took my pay stub and never went back. But I never forgot about the imaginary meat, either.

Weird

God, this is weird. There's no way I can describe how strange it is to see my words appear on the screen without typing them. Mr. Husband is sitting next to me being my amanuensis. (Look it up.) I'm thinking this has got to be the most awkward way to express myself, but I have to believe there is something I will learn from it.

In the last two months I have become aware of certain deficits in my neurological makeup. My body has become progressively weaker on the right side. I limp emphatically and my balance and coordination are shot. My right hand and foot are weak and uncoordinated. As of this week I can neither type nor write comfortably. Although these symptoms are erratic, they are worse when I am stressed. Fortunately, because of the way the body is put together, I am only experiencing these problems from the neck down. There is no way of knowing yet if they are at their full extent or if they will develop further.

On Monday I am going to see a new, fancy neurologist. I'm hoping he will have some knowledge, some generous impulse toward me. Before Monday I need to corral the results of the various tests I've had done. I tried all week to get through to my doctors and got no response. Today, in tears of frustration and fear, I asked Fish what to do. An hour later he'd charmed the staff at Hospital F and explained to me how to charm the staff at Hospital J. I resented it enormously and it worked. I'm so grateful. And pissed.

And in other news, I am quitting my job. Long story. I will tell it next time. In the meantime I am convinced that this is the best thing I can do for myself and for my employer.

Did I mention that this is weird?

Vexed

I went for more scans today and am a bit frustrated to report that there is still no change in my tumor status. We looked at the "films" (it is all digital now, so there aren't any real films) with Dr. Smile, my neuro-oncologist, and with the exception of an itty-bitty possible blip, there is no change. This is not a disaster, since there are still two months until the end of the window in which improvement may appear, but it is a bit, shall we say, vexing.

I was hoping to see some change by now, but (as I have mentioned before) my expectations are somewhat skewed by my first experience with ye olde radiation. What gets me is that I will not get another shot at it. Of course, I thought that last time, and I did get another chance, so who knows? I guess I should say that I don't imagine I'll have another shot at this treatment. But that's also new - a crisis of imagination - and it makes me feel, even without any evidence, doomed.

Anyway, I scheduled another scan for the third week of April. Until then, I will try to put it out of my mind; I have plenty to do, and obsessing doesn't help. Deep breath, move on.

But Now I See!

Not actually now, to be specific, but in the next week - the big day is the 18th. When they asked me at the eye doctor how long I'd been thinking about it, I had to stop and think. "A few months?" the LASIK doctor's assistant prompted helpfully, "or a few days?" I was a little embarrassed to admit I'd been thinking about it for oh, twenty years, so I just said, "a long time."

I dreaded, however, and rightly so, watching this little movie the FDA helpfully created. It's like a horror show - you don't want to look, but you can't look away. Consider yourself warned. It's almost more graphic because of the cartoons. When I first started wearing contact lenses, it took me months to get over the combination of my squeamishness and my instinct to protect my eyes.

My sister and I talked once, years ago, about the near-sighted person's enviable ability to blur the world around herself when necessary. Honestly, I think I will miss that. But being able to see in the shower? Or when I first wake up? Not panicking when I cannot find my glasses? Being able to wear mascara, if I choose to do so? That might make up for it.

Perchance To Dream

To sleep, of course, has to come first. Two nights ago I woke up in a panic - I was sure that we were doing everything wrong, that my judgment was terrible, that I wasn't keeping up with the accounting correctly, and that the entire program was going to crash and burn in front of my eyes. Mr. Husband talked me down, but I was edgy all day.

Last night I decided I was over it and that I don't need pharmaceuticals anyway because I am INVINCIBLE. That worked until about 3 am. I slept in a little this morning after I tricked myself into believing that I had to go to work. It's amazing the way having to get up helps me sleep!

When I was a little girl I performed, from time to time, in local theater productions. We'd often rehearse until it was later than I otherwise got home from school, and by the time everything else was done I went to bed quite late. My mother would say to me, "this is going to be a short night for you, so sleep concentratedly." She was joking, but I still say that to myself when I am facing a short night.

I am on vacation now, and I am doing my best to let go of my stranglehold on my job, but that isn't easy for me. I speak to my office daily, and while I recognize that this renews my anxiety, I think I would be even more tense if I was totally out of the loop. In addition, I have been battling my puritanical distaste for soporifics to no avail. Tonight I will take a pill, rather than waiting to see if I can outwit the sneaky terrors in my mind.

Tomorrow we start for home, and I am hoping that I will see everything with new and patient eyes when we get there. And I have missed the cat of little brain!

Here Comes The Rain Again

My maternal grandparents are Dutch, which is, perhaps, why I find rain so familiar and peaceful. I'm not talking about all rain, of course. But there is a kind of rain that happens in winter - cold rain, miserable to walk in, deeply dampening - which makes the world inside sweet and cozy. That's the kind of rain I mean. One travel guide says about Amsterdam "rain is likely all year round". It's melancholy but a bit delicious.

The song of the same name was recorded by the Eurythmics in 1984, when I was just about to finish high school. My friends and I were very romantic about the ending of this period of our lives. I do not mean this to belittle my experience then, but it was as if I had to invent the drama that I was sure was out there. I turned out to be right, but I didn't yet understand the actuality of being undone by basic and inescapable events. I made things more complicated because I thought it would be more interesting. Today, I no longer feel that simple is a insult.

I have been watching the rain since early afternoon. The bay is almost invisible and the sky is a darkening flat grey. I am staying inside with Mr. Husband and my mother and we might play some Scrabble if I can convince them to. This is all I need - a warm home, some good people to love and be loved by, work in which I believe. A cat would be a bonus, but we have one at home.

Oh, and chocolate, of course.

Still Changing

Since my life revolves around my work (which has been much easier since I adopted the 12-hour day limit, so whoever gave me that idea, thank you!) my joys and frustrations are similarly framed. When we got the Big Gift (a story that I have told repeatedly, so I'll spare you) my world changed enormously, and is still changing. One of the many new activities I've incoporated into my daily routine is explaining to people how the whole thing works, thusly:

No, we have no model. Nobody has ever done this before.

Yes, there is enough money. How long will it last? For the foreseeable future, if we manage it to the funder's satisfaction. But that's a big "if".

Yes, we fund early abortions and medical abortions. We can afford it now.

For now, we fund only in states where Medicaid will not cover abortion. There are 35 of them.

No, we cannot reimburse you for an abortion you had yesterday, last week, or last year.

I do not know who the donor is, but if you send your letter to us, there is someone here who can arrange to get it to him/her/them.

No, you do not need to pay us back. This is what we do. Really.

We got a call a couple days ago from a doctor who had seen one of the women we helped. He was very upset that we had spent so much money on her. She paid out-of-pocket for the DNA test she needed to establish paternity, and discovered that her pregnancy's other genetic material came from the man who had beaten and raped her for years. She chose to end the pregnancy rather than raise his child. We paid for most of her abortion. This doctor felt that we should be saving our money for the hardest-luck cases, the proverbial (and yes, there is a proverb) 12-year-old-rape-incest cases.

I explained to him that nobody else would go without care if this woman had an abortion. "Eventually, though, the well will run dry, right?" he asked. And I told him about how if we spend all the money we will likely be eligible for more, but if we do not spend it, we won't be eligible for anything. There was a silence. And then he said, "My god. I had no idea. Don't let me waste any more of your time! Go on! Get out there!"

Some days I really love my job.

Something Brought

My apologies to the assembled company. If I have any excuse for being so cryptic, it is that I really didn't realize I was being so. You must understand that I have been out of the company of normal people - as I write that, I realize I am rarely in the company of people anyone would call "normal", thank god, but you get the point - because I have been working. I have been working a lot.

So much, in fact, that I seem to have allowed some of the finer points of communication to lapse. I blame my Lead Case Manager. She is the first and (at this point) only management person I have ever hired who had not previously worked in my department. I'm going to call her Troi because she has, by virtue of reading my mind like her telepathic Betazoid counterpart, made me forget that most people need me to tell them what I am thinking. Often, and especially at crucial moments when we are interviewing someone, I say something like, "yes, um, like, what?" and she translates it to "we were just exploring our employees' comfort level with various different procedures, including but not limited to selective reduction." Which is exactly what I was actually thinking about! So why speak, really?

Here is the information that I should have disseminated last week. The tumor is not shrinking. Neither is it growing. This is completely normal for where I am with the radiation. The scans show edema, but other than that there is nothing remarkable about them. Some months ago I wrote about discovering just how unusual my first experience with cancer had been, and how confused and disappointed I was when it normalized. I wasn't used to normal. This is very similar.

I am trying to celebrate normalcy this holiday. I have been thinking about Good King Wenceslaus, and how he brought dinner and wine and fire to the poor peasant, so that he would have something to eat when the rest of the world was probably gorging. I remember, as a girl, thrilling to the lines "page and monarch, forth they went, forth they went together" as I imagined walking out in a winter wasteland on a rescue mission. They were bringing the normal life they knew - nothing fancy, just food and drink and warmth - to someone else. The important part was the bringing.

I hope this holiday brings you all you wish for.

Hotties

None of us expected such a swell of response - practically overnight! And we especially did not anticipate that it would cripple the company's phone lines, and that nearly everyone would end up with messages meant for our department. Some people are a bit peeved, but all of them are thrilled at the same time. This went to my company today:

[I've called the hotline staff "Hotties" for as long as I've had a leadership role in the department.]

Dear colleagues,

The Hotline is slammed. We are dealing with an incredible increase of calls in a very short time, for which neither our operators nor our equipment were prepared. If you have a number that is accessible from the outside world or, worse, your number is listed in the switchboard's outgoing message, your calls either already have or are about to increase.

Unfortunately, all I can suggest is that you encourage callers, should you speak to them, to keep trying. Evenings are better than days. If they are already working with a case manager, they should try their case manager’s number and leave a message. Leaving multiple messages, however, will not help. All calls will be returned in the order in which they were received.

Thank you for becoming Hotties, even if it is only for a little while and against your will.

A number of our Board members happened to be in town today, and stopped by to watch us give out money. Some wept.

What a life I have!

Enacting A Philosophy

It turns out that I have a lot of explaining to do before I can elucidate quite what we are going to do (STARTING TOMORROW) with the money we've just received. For example, there are people who come here who have no idea what I do for a living. When I started this blog, it never crossed my mind that it would become important, so I didn't think to frame it in terms of my politics.

If I have learned anything from my illness, it's that you cannot hide from conflict. I have always thought that (to quote Carol Hanisch) "personal problems are political problems". However, I have not always enacted this philosophy. I do have to say that running an abortion hotline that receives over 3,000 calls a month for referrals, information, and counseling is a pretty good start. But it requires a great deal of energy to be consistent in the effort - even though I believe in what I do, even though I have a terrific staff, even though I admire the women I serve.

The problem is that I hate to make others uncomfortable. I understand better than anyone how important that we all have our (non-violent, non-hateful) feelings about this. By keeping this blog separate from the rest of my life, I made a space where I wouldn't have to get "into it" with critics and dilettantes. I love what I do, but defending my position at every turn can be exhausting, and there are few issues about which people are more passionate than their right to decide what everyone else should do. I like to take a break from it sometimes.

I'm reminded of being bald for the very first time; it was extremely unusual to see a bald woman back then, and people were curious. I didn't feel embarrassed about my story, but the people who asked me often were. I often couched the truth in a less dramatic truth - then, "it fell out when I was sick", now, "I work for a non-profit". Understand, please: I was never ashamed, not then and not now. But I didn't want the other person in the conversation to feel self-conscious.

What I have come to believe, however, is that if I am going to do this work (which I am) I have to own the truth of it, even when - maybe especially when - it makes others squeamish. Unlike my counterparts on the anti-choice side, I am not out to make converts; I just want women to have the right to have a safe, legal abortion procedure if that is what she chooses.

There is much more to say, and it will be said, but right now I have to go to bed. Tomorrow morning, with the help of our generous donor-who-shall-not-be-named, I will be helping women enact their choices. It is quite possibly the most exciting thing I have ever done.

Survey Instrument

I have traded the roiling feeling in my gut for two days of work during what was supposed to be a long weekend, and you know what? It was a good trade. Many thanks to Mr. Husband and his erstwhile CG (Computer Guru) for rescuing me.

Tomorrow morning I present our "survey instrument" (which is what people in non-profits call a "bunch of nosy questions") and hope that it is good enough. If not, no money. The stakes aren't high, or anything.

And tomorrow evening I have the first of four meetings with my staff and my boss - my boss, my assistant, and I attend all of them, and my staff is split into four groups by availability. We have to teach them how to use the instrument. Of course I do not know how to use it myself, since we only finished writing it this afternoon. But I have a feeling that a joke about whether we should pluck or strum might get me beheaded by my colleagues, so I'll stop here.

A few days ago this seemed completely impossible. Now, well, we just have to tie up the loose ends.

Oh, and get the money, of course. Did I mention we don't have it yet?

Whistling On Stage

In my absence I am trying to find at least mildly entertaining substitutions for the blog, but all I can think about is the boatload of money that I have to track starting next week and HOLY S**T WHO WOULD BE STUPID ENOUGH TO GIVE ME THIS MUCH MONEY TO SPEND. I told my boss that I cannot even balance my checkbook and that this is a terrible idea (TERRIBLE) but she doesn't listen. So I wake up at 4 am thinking that I've just given it all away to someone who doesn't begin to qualify, who is not even low-income, who can totally afford her own care, and a year's vacation in Kyoto on top of that, and here comes the IRS and the donor and I have BLOWN IT.

And I know I have been unresponsive, even evasive, about this, but there is a designated purpose for this money, which I will happily share with you when the check is safely in our account. While I'd like to say I am not superstitious, it would be a lie - I don't walk under ladders or whistle in theaters, even though I know that it doesn't cause bad luck, just unfortunate cues.

In the olden days, stage hands were out–of–work sailors (theaters and ships share a profusion of ropes) who communicated with complex whistles. So, if you were walking around stage whistling a tune, you could accidentally call down a sandbag onto your head!

Meanwhile, I need to get back to fretting about how unsuited I am for this job. Because who needs sleep?

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!

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.

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.

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.

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.

May I?

First off, let me just draw attention to capybaras in the news. Remember, they are equines, not rodents.

Second, I have a treatment plan and will be going to Hospital F for radiation. I am impressed by them and particularly by the guy who will oversee my treatment. I am going to have my mask fitted next week. (And explain that strange statement!) There will be an exhaustive posting on this tomorrow, with more than you ever wanted to know. Today I am too tired.

Third, the Grant has taken another tiny step toward us, so I will have a lot of work to do before Wednesday, to help prepare my CEO to negotiate. Exciting!

[Does anyone else remember playing "Mother, May I?" as a child? Here's a description. I think it may have been the only time I was so polite. Going through the steps to get this money feels a little bit like that.]

Errata Compounded

I try not to be too self-referential in this blog, or create posts that require that someone to read some previous post to make sense of them, and boy was that a strange sentence phrase, but blame it on driving 11 hours home today. What? Oh, yes. I felt I had to put this here - it is too good to miss.

Tonight we got home from vacation. I listened to our phone messages. There was one from Tuesday, from the clinic where I saw Dr. Mistake. (Go to the entry entitled Errata.) They figured since I had MISSED MY APPOINTMENT with him, they'd better check in to make sure I didn't need to reschedule.

Missed my appointment. With the radiologist. Whom I was never supposed to see in the first place. Who is not a radiation therapist, because they do not have those at that facility, but where I was given an appointment anyway. All of which seems deeply mysterious to them, and is probably my fault because in their parallel world I apparently missed the appointment that I actually waited for half an hour, thus further delaying my vacation.

Sometimes I wonder how much of my hair actually fell out on the first round of treatment and how much I tore out in frustration.

(For a beautiful image of a bald woman, see http://imsc.usc.edu/haptics/LostandFound/contemporary_sb_3.html.)

Errata

The title is a warning. Settle in, folks, because this is going to be a long one.

I now know less than I did when I wrote my last entry. Funny, that I live in a moment where unlearning is more pervasive than learning. I would be happier if I was learning more, and I suppose that in a way, I am learning, but I am learning that some of the things I thought I learned were wrong.

In The Sound Of Music, when Julie Andrews is teaching her young charges about singing, she begins, "start at the very beginning - a very good place to start." So I am going to go back to before last Monday.

After I had my workup with the radiation therapists at Hospital J, we all agreed that I should also check out Hospital S, which is much closer to where I live. (Radiation therapy is a time commitment, in that one is treated daily, and convenience counts.) Hospital J is where I have had all my treatment to date in this city, including the craniotomy and subsequent chemotherapy in 2003. In the course of arranging the Hospital S workup, I ordered the Ancient Scans from Hospital B, which is where I was treated in 1989.

(Bertha totally came through with the scans, by the way - not only did she send them, she called later to make sure they'd arrived. We need more Berthas in the world.)

The radiotherapists at Hospital J were really comfortable with the team at Hospital S, and my primary care folks were as well, so it looked like everything would be copacetic. The only problem was that their first available appointment was not until this last Monday, when we were supposed to be on vacation. I didn't see how I would be able to relax until there was some resolution as to where I would be treated, so we rearranged our plans to remain in town through Monday and leave for vacation immediately after the appointment. It looked like all would be smooth sailing.

There is a cartoon by Sidney Harris that I have always found hilarious, which shows a mathematical progression that includes a miracle. What happened next in the story of Monday is like the anti-miracle. Somehow there was a misunderstanding of mammoth proportions and I ended up at the office of a radiologist instead of the office of a radiation therapist.

"So what?" I hear you ask. Well, radiologists use radiographic techniques (like PET scans, X-rays, MRIs, etc.) primarily for imaging and diagnosis. Radiation therapists use radiation to control (i.e., destroy) malignant cells. While both are amazing advances in modern medicine, THEY ARE NOT INTERCHANGABLE. Add to this the fact that the medical group where I went on Monday acted as if I had set this up myself on purpose to confuse them (the doctor's first words to me after he looked at my chart were "what are you doing here?") and the lengths I went to make sure we'd be in town for the appointment and you will get a sense of my frustration. Then this doctor - we can call him Dr. Mistake - told me that I'd need to reschedule, because I'd gotten the appointment in the wrong place. Never mind that we'd put off our vacation. Never mind that I was waiting to find out what treatment would be more likely to save my life. Oopsie!

Maybe he actually looked at me for the first time then, and saw that I was about to blow. At any rate, Dr. Mistake suddenly started moving on my behalf. He does work at Hospital S as well as at this clinic downtown, and he called what said was the "bat phone" to get me in immediately. (I thought at first he said "back phone" - medical places frequently call the line that goes directly to the medical offices the back line or back phone - but it turned out he was invoking the power of Batman. Which redeemed him somewhat for the initial condescension.) He came out with a name on a slip of paper and told us to get there right away, because she would be waiting for us.

We jumped in a cab, zipped to our house, grabbed the luggage we'd packed for our vacation, and leapt into the car. We were at Hospital S in about an hour. They swept us in within moments. (At least, they tried to. We got to witness some internal power struggles as the receptionist battled for me to fill out every piece of paper she could find before I went in, because of course that is the most important piece of the treatment plan.) I was still filling out paperwork when SuperNurse came in. Lovely, funny, sweet, comforting, and smart. She got my extended health history and made a brilliant suggestion, which I wish I'd done years ago - write up my health history on my computer and bring it with me everywhere! I'm working on that now.

And then we met WonderDoc. Oh my. I didn't think anything could redeem that day, but I was wrong. She was so ON. On her mark, on her game, on the spot, on her toes, on track, on the go, on tap, on point, on a dime, on time, on board, on topic, on the ball, on a wing and a prayer, on the money, on top of (and I mean this in the most admiring way) SPAGHETTI. It was so reassuring to be treated as an intelligent adult by another intelligent adult. She never condescended. She explained all of her suggestions. She made sure our questions were answered. By the end of the appointment, she had made me a list of things to do right away, all of which made sense in a way that they never had before. And I'm not even telling you about her burgundy patent leather shoes.

Of course, I desperately want WonderDoc to treat me, and she will if she can. The problem is that there are roughly 4 million different types of machines that they use for radiotherapy. Given that I have already had radiation treatment once (albeit almost 20 years ago) the doctors are eager to expose my brain to as little radiation as possible. In order to do that, they are looking at two forms of radiotherapy: IMRT and tomotherapy. Hospital S has a machine that does IMRT, but not tomotherapy, which WonderDoc suspects would be better for me. For that, I will have to go to Hospital F.

Quick and dirty definitions: IMRT stands for Intensity-Modulated Radiation Therapy. In other words, it is high-precision radiotherapy that "utilizes computer-controlled x-ray accelerators to deliver radiation doses to a malignant tumor or specific areas within the tumor. The radiation dose is designed to conform to the three-dimensional (3-D) shape of the tumor by modulating the intensity of the radiation beam to focus a higher radiation dose to the tumor while minimizing radiation exposure to surrounding normal tissues". (See reference here.) Or, in OTHER other words, there's a computer that makes sure that you only hit what you want to hit with the radiation. What I am less sure about is whether tomotherapy is basically a form of IMRT, with an excruciatingly exact machine.

I will learn more, however, because next Wednesday I will see Dr. Asclepeia at Hospital F, and we will talk. In the meantime, I've set up a mapping appointment (when they will made a mask of my face to guarantee my position for each session will be the same) with Hospital S, in case she suggests that I go back there.

The overlay to all this, and perhaps the redeeming feature of the whole mess, is that every single one of these doctors was trained by the man who was my original radiotherapist back in 1989. I am going to call him the Godfather because he seems to be responsible for all the radiotherapists on the planet, or at least on the eastern seaboard. WonderDoc called the Godfather to consult about my current situation, and he opined that the course we have begun seems "reasonable". I trust him.

Needless to say, this is not how I wanted to leave things before I went away. Nothing is pinned down and it makes me anxious. Rather than feeling resolved, I feel at sea, a dark sea with potential monsters brushing against my windmilling legs in the water. But on the plus side, the Godfather is satisfied that we are on the right track.

And at least I saw the right kind of doctor in the end. That was good.

Grant's Proposal

Hubbuda hubbuda hubbuda. That's what we used to say when we were just too tired to be coherent, which pretty much describes me tonight. In an effort not to think too much about Thursday (or Thrusday, which is what I wrote first, because why isn't there a Thrusday?) I am working my fingers (or finfers, which is what I wrote first, because on Thrusdays I have finfers) to the bone.

Not to mention that the Grant (it is capitalized because it has TAKEN OVER MY LIFE) is has now oozed its way across my desk and into all of my filing drawers. Everything is coated with Grant goo.

So here's a kind of funny story, my mother used to be in a sort of work/study group and they were working on a grant proposal and I was about ten and I thought they should just write, Dear Julia (Mrs. Grant's first name was Julia) will you marry me love Ulysses.

If that last paragraph does not indicate a need to go to bed, I do not know what would.

guess whose tomb this is!

Ow

I'm sorry, I just can't do it today - too many hours at work writing another section of the never-ending proposal. Carpal tunnel is acting up and I simply cannot type another wo

Hubbub

Today the hours seemed to just slip by. Partly this is because I love what I do. I truly do, and it is a good thing, because if I didn't it would be a lot of time to spend doing something I don't love, if you follow me. But partly it is also that I feel so very much better than I did last week. I mean, how can I complain? I'm not even nauseous!

When I think now about how low I am setting the bar for a good day, it seems a little sad. On the other hand, I am SO grateful for the quiet days. I feel like sick days are noisy, and since they tend to come in bunches (along with the treatment) it is like receiving a bouquet of noise. Cacophonous carnations.

Some years back, my colleagues and I took the Myers-Briggs Personality test. We actually took the tests (you can take a similar one here) at home and sent the score sheet in, and then a facilitator came to us to explain the results. I'd taken the test at least twice previously, and although some details changed in my profile, one thing was absolutely clear: I am an introvert. Closeted, perhaps; years of acting classes (and a little of what my therapist calls dissociation) have served me well in that most people do not think that I am introverted at all. People actually laugh when I tell them how hard it is for me to introduce myself. But it is.

So you can imagine how surprised I was when the facilitator started at the EXTROVERT end of the spectrum and called my name first! She talked about how outgoing I am, and how I loved to be with other people, and how I secretly might fear being alone. (Just so you do not get the wrong idea, she didn't identify me by name, but used a number that had been assigned to me earlier. I outed myself later, which I suppose was a bit extroverted.) About how I gained strength from people. How I loved hubbub and how groups made me come alive.

At the break, I went up to her and asked if there was any way she could have mis-scored my test. She was quite smug about it and explained intensely how people's scores do change. I said I was sure they did, but I'd been an INFJ every other time I'd ever taken the test. I think the fact that I knew the shorthand helped (Introverted iNtuitive Feeling Judging) her justify revisiting my score. But that night when I went home, I had this little voice in my head murmuring this cannot be right. And if it is right, is this what it feels like to love hubbub? I hate people. (Which I actually do. I like some particular persons, though.)

The next day when we began she started by very graciously apologizing to me. She'd somehow managed to score my test - mine, and one other - absolutely 100% backwards. So I was not the highest-scoring extrovert in the group, I was the highest-scoring introvert. Which means that it makes sense that I would associate noise and yes, hubbub, with something that sickens me, and quiet - blessed, lovely quiet! - with something that feels healing to me.

An interesting question: would an extrovert experience an unpleasant physical experience like chemotherapy as too quiet? I am clearly the wrong person to ask.

Signing On The Dotted Line

I think I've mentioned before that part of my job is making small grants. The process involves phone calls and faxes and signatures, but the final challenge to the grant comes when our affiliate returns their pledge to me so I can initial and date it. Then it goes to our financial folks to be paid.

I get, I don't know, maybe 4 to 8 of these every week, and I try to turn them around quickly. Since I am the person who writes the original pledge to begin with, I look at my signature fairly frequently. And I like the way my handwriting looks. I practiced for years with an italic nib to learn how to shade my lines, and I love it when I have a good pen and can swoop through the downstrokes. When the ink is flowing properly and you have the right kind of paper, even writing a grocery list is a joy.

Offices do not have the right kind of paper, for the most part. Copy paper - yuck! It's too slick to absorb ink, and no amount of blotting will help. I only keep one "real" ink pen at work now, and that's for emergencies. I have to confess, though, that I took Mr. Husband's last name when we got married partly because I love signing it. Swoop! Swoop!

All of which is to say, even when I am writing something as pedestrian as a promise to give an organization fifty dollars, I take a certain amount of pride in my penmanship. (Penwomanship?) At the same time, I have never really believed all the hoopla around graphology, although (like reading tea leaves) it will inevitably be right some of the time. But sentences like "large size handwriting can mean extrovert and outgoing, or it can mean that the writer puts on an act of confidence, although this behaviour might not be exhibited to strangers" seem confusing and vague to me. I mean, how many extroverts do not seem outgoing to strangers?

Until today, that is. Because today I received back two pledges I had written. One was written about ten days before my office moved. At that point I had put two or three things in boxes, and made a couple of lists. It looks like, well, my signature, swoops and all. Legible, but stylized.

The other was written the day before the move. And you cannot even READ IT. The shaky letters tumble over each other and there is no discernible line to the scrawl. Oh yeah, I was fine with having everything boxed up and taken away. No problem.

what does your handwriting say about you? find out here...

Snakes In The Grass

I make a lot of stupid assumptions. The thing is, they don't feel stupid when I make them. But I guess at my age I ought to know better.

Part of my job involves giving away money. In order to get this money, a person has to go through a financial counseling session with one of my staff or with a staff member at one of our affiliates. It is a small amount of money, in the grand scheme of things, but can mean the difference between one kind of life and another for our clients.

Nobody enjoys this process. The clients hate it. We ask questions that are personal and intimate. The staff hates it, too. We make a concerted effort to be empowering with the callers, and this part feels (at least to me) like infantalizing them. But we have to do it because the funds are so limited that we have to find the person who has no chance of raising anything more on her own before we give it away.

It is a huge project to defraud this system. All the questions you have to answer strategically and repeatedly, for one thing. Remembering the lies. I always think that, were I to want to defraud someone, I'd have to keep notes on my story - my memory is just not designed for lying. I can barely remember basic truths (where is my date book?) never mind keeping track of who knows what untruth. But it happens.

A few years back, a woman called us with a story I can only describe as horrific. She claimed to have been in a situation that left her close to death. I, personally, raised a large amount of funds for her. When she arrived at our affiliate for services, the manager there called me. The situation this woman had described would have left distinct evidence on her body. And it wasn't there. They had started working with her, so it was too late to rescind the donation, but they wanted me to know.

I remember feeling shocked, and then furious, that I had been played. I was terribly embarrassed, also, that I hadn't caught on - I've been in this field a while, and I like to think of myself as relatively perceptive. But I discussed it with a colleague and decided that I would rather be the mark who gets taken from time to time than the person who regards all others with suspicion.

Which brings me to last Saturday, when we went to a well-known electronics chain to buy a new telephone. The clerk was all pigs-in-space (the Muppets keep coming back into this) and kept running back and forth from the stock in the back to the aisle where we were waiting with our new friends, a hissy mother and daughter who were preparing the daughter for college.

The first thing hissy mother said to me was "we were here first!"

So I should have known better to think that by asking the clerk to look for the phone for both of us I would make things more efficient. Instead I got prodded with hissy mother's nasty fingers and told that she wasn't going to let me cut in front of her. I tried to defuse the situation by telling her I was happy to have her go first, or something like that. Rather than calming her down, this inflamed her further, and she mocked me. I was so incensed I had to leave the store.

What I should have done was to back away slowly and remember that this hissy woman is probably being separated from her hissy daughter for the first time, and that she is stressed, and therefore a total bitch. To this moment I am thinking of things I should have said. But I didn't. I assumed that there would be a degree of rational behavior between two adults in an electronics store. I assumed that she wasn't out to get me, and was surprised when she assumed I was out to get her.

I cried in the car as we drove out. It is depressing to realize how many people have already cast the rest of the world as the bad guys. It messes with my sense of faith in humanity.

And yet, I would give that client the money all over again.

Nuts

Today, for the first time in a long time, I am sitting serenely at my desk. Just sitting. I have finished the grant proposals (well, as much as I can do for the moment) and the office move is over. I had a wonderful visit with my sister and her family, including my almost-3-year-old nephew, who is a creative, imaginative, joy of a child. Nobody is waiting for me to produce anything by tomorrow. (Monday, maybe, but not tomorrow.) I had forgotten how pleasant just being in the world can be.

And this is going to sound a little strange, but today I had a really good smoothie (apparently there are some smoothie franchises left after all) and I think that the fact that I am not wondering whether I ate enough of the right fruits, vegetables, and protein today is also having a relaxing effect on me. Sadly, I am not being sarcastic. I know that diet matters. Most recently, I have become more and more obsessive about protein.

I was told early on in my cancer survivor career that most medical professionals agree that "you must maintain adequate nutrition throughout your chemotherapy and radiation therapy treatments" because "undergoing conventional cancer therapy may require as much as 50 percent more protein than usual". (And 4 out 5 dentists surveyed recommend Trident gum for their patients who chew gum. Personally, I like Trident White because you can leave it in your car for A YEAR and it does not get stale tasting or hard to chew. But I digress.)

So I spend a lot of time wondering if I am getting enough protein when I am in treatment. When I plan meals, I am rigorous about protein. I start to fret if I don't get at least two large protein-filled items every day. I started eating animal protein again a few years back, because it is a more efficient way to ingest large amounts of protein at once. Bring it on - eggs, soy, ostrich, turkey, tofu, fish. I still don't think I am getting as much as I should be.

I am now at the point where I keep mixed nuts in my desk for protein emergencies - pistachios, walnuts, and almonds are apparently especially heart-healthy. My father died of a sudden cardiac arrest about a year and a half ago, which means that even though I am fairly young I have already had a full cardiac workup. (Everything was fine, except for my father being dead.) In the few weeks when I was having the testing done I actually felt a little foolish, since I have focused all the concern I have about my health on cancer, glibly forgetting that I might have more than one serious health problem. Fortunately, I do not.

Because really, when I think of all the things that can go wrong - heart disease, yes, but also flood, famine, scabies, fin-rot, lockjaw, tornadoes, cancer, AIDS, illiteracy, poverty, substance abuse, hangnails, food poisoning, toxic shock, insomnia, having a really annoying song stuck in your head, and on and on - very few of them have happened to me. If we all looked at the world that way, maybe all of us would feel as relaxed as I do tonight.

Because we should all hurry up and relax while we have time.

Shoehorns and Priorities

Because there are a limited number of hours in the day (I know, I was surprised too, but it turns out to be true) I cannot hope to do a blog entry a day right now. Mr. Husband's sister and her husband were driving through today and we had lunch with them. I am in the throes of a huge grant application, but have no computer. And yesterday, we began in earnest (we've been preparing for months) the process of dismantling our entire office and moving it to a new and somewhat smaller location.

Some of us also had the misfortune of inheriting a workspace that has been used by pretty much every department in the company as a dumping ground. This means that we are sorting materials that mean very little to us, even if we have been with the organization for quite a few years and have paid attention pretty well. Documents from various projects in which I was not involved, invitations to events that happened long ago and in a galaxy far away - I cannot pretend to know what is important and what isn't.

[On the other hand, maybe this is the best way to sort things. With no emotional (or, for that matter, intellectual) attachment to anything, I save only what is obviously and demonstrably Important. It would help to have that stamped on each important sheet of paper, but then you're back at square one.]

And tomorrow we will try to shoehorn ourselves into the smaller, if fancier, space. My staff is disappointed and if truth be told, so am I. However, we can make it work, and bemoaning facts doesn't make them change. I am trying to put a positive face on the situation. I admit that at the moment that feels like an uphill battle; I'm not getting a lot of support. But then I remember - it's only work. Not my health, not my home, not my family, not my friends. All of which should rank above work, I think, or at least above my workplace.

Which is to say, either my daily priorities are really messed up or perspective is hard to come by. Or maybe I'm just tired, which I can actually address by going to bed. Goodnight!

More Panniers, Please

Neotoma Cinerea (pack rat)

Recently my mother sold the house in which I grew up, and I spent some time there going through old belongings. I tried to be brutal with myself, but my tendency toward pack-rattiness (also known as Neotoma Cinerea syndrome; note that they are "handsome") kicked in. Did you know that pack rats are also known as "prairie flounders" because their eyes are placed rather higher on their heads than other rodents? I did not. (Nor did I know that they are willing to drop whatever treasure they are already carrying if they see something sparkly, but that feels right to me.)

Let me be perfectly clear: I am terrible at throwing things away. I pretend to be all airy about possessions but it is an act, ladies and gentlemen, an act. The colleague who was helping me pack for our upcoming office move had to tell me to throw away Advil that expired three years ago, notepads with one piece of paper left on them, and an unidentifiable piece of curved metal which I was sure I would want the second the trash was picked up.

Then there were the notes. Here's how it works with notes: I cannot get rid of them. Even if I have transcribed the content of the note. For example, someone gives me a new address and phone number for their organization. I copy this into my rolodex and make sure the email address is correct in Outlook. But I do not throw away the piece of paper, I guess because if I lose the rolodex and the computer I can always look for the paper in my Stack of Small Pieces of Paper.

Mr. Husband and I live in a row house. I love our house, but there is not room in it for the two of us, the cat, and the ten thousand pieces of paper that I must save. One of these is a note that someone left for me in 1987. Love note? Critical communique? No. It is a note that was left on the door of an office, directing me to an alternate room for a meeting.

Here is the problem: I do not trust myself to remember anything. Thus, if I have saved a piece of paper for the last twenty years, there must be a reason that I JUST DO NOT REMEMBER. I must save this piece of paper for the inevitable moment when a mysterious figure appears out of the mist to ask for proof of where that fateful meeting was held in 1987. It could happen! And if I cannot produce it, who knows what could befall all of us? And don't get me started on throwing away items that I do not recognize. I imagine all kinds of scenarios in which some crucial outcome rests on a piece of electronica which no longer works because I, unknowing, threw out the single piece that made all the connections.

However, under the gentle tutelage of my colleague, I threw away all of these things and more. Wish me luck with the mysterious figures.

No Poo

Well, it seems Mr. Husband has magically fixed the comments function. For all of you who were stymied by it yesterday, try again. I don't know what happened.

"I don't know what happened" seems to be a staple of my vocabulary lately. I guess it's better than just staring blankly into space, as a certain kittycat (who shall remain named Merle) does. So, no, I don't know what gave me that big blister on my toe (I've had those shoes for ages!) and I don't know how that box that clearly belonged to my department got into the passageway in the back hall, though it was obviously there at least two years.

I also don't know what happened to the idea that elderly people should get to board the bus first. I don't know why, no matter how early I go to bed, I always hate getting up in the morning. And what happened to smoothie franchises? They used to be all over the place. I love smoothies.

There are lots of other things I don't know, but this I do: after I finish a round of chemo I become absolutely high on not feeling nauseated. For a couple of days, I feel like I have unlimited energy. I've been working 12 and 13 hour days because I love it SO MUCH. And yet, without the nasty side-effects of the drugs, I wouldn't have felt it at all. It requires the juxtaposition. How unsettling is that?

To look at it from a different angle, I have never believed that you have to suffer to create art. But when I'm not in treatment, well, I don't keep a blog. Hmm.

Jury Duty

I was too upset to write about this the day it happened, but (like many things) a little distance has made it sting less.

I was called for federal jury duty way back in March. I really don't mind serving on juries; it isn't always fun, but I find it interesting. (Truthfully, the last time I served it was depressing, because the defendant was so obviously guilty - he basically admitted it - but we couldn't convict because the prosocutor did such a lousy job. It was sad.) This time promised to be even more interesting because it was a federal case.

However, between then and now, I recieved the diagnosis that prompted me to start this blog again. And I didn't start chemo when I had expected to, which meant that I was going to be in treatment when I had to go to court. I started checking the jury website every evening, as instructed, to see if I had to serve the next day. My thinking was that there was really no reason to call them and explain the situation unless I was being called. And I got through the first week (in this city federal jury duty means two weeks of checking in daily) without being called.

The jury website doesn't post jury lists until 5 pm on the night of the weekday previous to the one when you are called. It was thus that I found out on Friday evening that I was expected to show up on Tuesday, my third day of chemo. Therefore, at 8:30 in the morning on Tuesday, I called the number for the jury clerk to tell her my story and find out what to do next.

I expected to be asked for a letter from my doctor, or even from the hospital. But this is what I got from them:
me: I have a medical excuse, and I need to know what you need to have in the letter from my doctor.
woman: What's wrong with you?
me: Um, I am in treatment for cancer. In my brain.
woman: You're going to need a letter from your doctor outlining the nature of your problem.
me: Like, what I can or cannot do?
woman, snickering: If you really are that sick, they'll know what to say. I don't need to tell them what to say!
me: (nothing, I was too shocked)

Let me just broadcast this loud and clear to all you people who think that it is fun to pretend you have a life-threatening illness (and yes, I am including you, Mr. 1990 MBTA passenger who scolded me for lying after you pestered me for so long about my baldness that I finally told you the truth):

IF I WANTED TO PRETEND THAT I WAS SOMEONE OTHER THAN WHO I AM, I WOULD NOT PRETEND TO BE A PERSON WITH BRAIN CANCER. I WOULD PRETEND TO BE XENA, WARRIOR PRINCESS.

Heroes and Kickball

We had dinner this evening at a Thai restaurant near our office. (My chemo has yet to start, which annoys me, but it has some advantages, including that I still have an appetite.) This place is on the second floor of a building overlooking a busy street, and they have a patio outside which looks down on the people bustling (or dragging) home from work. It was a beautiful night - unusually for this city of extremes, it was warm but not hot, cool but not cold, breezy but not windy.

From our perch above the world we saw two of our colleagues walk past on their way to the bus (we called to the first one but she didn't hear us, so we didn't repeat the experiment) and several members of at least two kickball leagues.

[Aside about kickball - these people take their kickball seriously. The league with a national presence and chapters everywhere has apparently bought the other one's alternate website address, (their name).com, making them CYBERSQUATTERS. Also they do not sponsor parties that are as good as the other one because they only spend $15 per player. And annoyingly, they sling no mud on their website, which makes for very boring reading. Yet you do get the feeling that they are about as slick as a snake oil salesman.]

From our aerie I could see (it was behind Mr. Husband) an interesting interaction between two dogs. The first one was a white dog about the size of a collie and seemed like a puppy - ebullient and large pawed. The second was mostly black and about the size of a Jack Russell terrier. I saw the first one first, which I guess is obvious, but because of that I didn't understand its behavior. It stopped walking, let its person walk by it, and laid down on the ground on its tummy. Meanwhile the black dog walked the rest of the block to the white one, and sort of nuzzled it, as if it was saying, "what's the matter with you? Get up!" And the white dog jumped up and I swear, it danced with joy.

Last weekend I went to another city for a celebration for some people who had a huge impact on the movement in which I work. These were ground breakers, law defiers, persons of enormous integrity - and my heroes. The man who was being most honored has been an inspiration to me ever since I have known of him. He is now an old man, and after I was introduced to him he kissed me and thanked me for my work. HE thanked ME. He thanked me. And I almost danced with joy myself.

Theater(s)

Suzan-Lori Parks, who is formidable playwright, started writing a play a day in November 2002, and stopped in November 2003. The resulting 365 plays were published in 2006, and are being performed this year by companies large and small throughout the country. In my city, it is the Studio Theater that is doing a majority of the work, but smaller companies are also involved, and tonight we went to see the plays from the third week of May at one of our neighborhood theaters. You can read each play on the corresponding day here. It was quite wonderful.

(And how amazing is that, that we have neighborhood theaterS. There are at least three within easy walking distance!)

My play for today would be better than a play I might write for May 14. (Scroll down to the very last - or first, I guess - post.) But I am still frustrated that even though I sent in my information to the hospital Monday, the drugs for my chemo were ordered from the pharmacy on Thursday instead of Tuesday, and that the outcome is that I will not have them until this Thursday at the earliest. What comes to mind are the famous Macbethian words, "If it were done when 'tis done, then 'twere well/It were done quickly" but those are about an assassination, so maybe I don't want to go there.

The upshot is that I am not a patient person. I've heard that patience is an acquired trait, and that it gets easier as one ages. But truthfully, it is my sense of urgency that has increased. Come on, folks! I've got places to go and people to see!