Fear No Capybara

Thanks to my cousin for drawing my attention to the "enforcing" side of the normally placid capybara...

Make It So

Whew! I keep thinking that it will slow down a little and I will be able to post something substantive here and I am WRONG WRONG WRONG. I have been working long hours and there is always more to do. We are putting out fires and running to catch up with ourselves. We did zero publicity last week, but we spent more money in the first three days than than we did in the entire PREVIOUS YEAR. Do you see what I mean?

We don't have to niggle and bargain anymore. Not that we have everything or everyone covered - but in a majority of states, for a majority of women, we can help. A choice has meaning. Both they and we are in a bit of a state of shock about it. The savviest callers question us intensely, making sure we are not pulling their proverbial legs, testing the limits of these new truths.

Yesterday I spoke to a young mother of two. She was unemployed and her babies were three years old and six months old. I told her that under our guidelines, she qualified for us to pay for the majority of her abortion. She burst into tears and told me we were saving her life. We talked about how the pledge worked, how she would bring the money she'd been saving to the clinic and we would pay the rest. Before we hung up, she asked me to tell her one more time that she didn't have to pay us back. "I just can't believe it, can you say it again for me?"

So I told her again. And I told her that this is the way it should always be - that there are precious few things we can call our own in this life, but our bodies should be sacrosanct. When I think about that, that any person has the right to make decisions about her body, it seems to me that this has got to be Meaningful in a more cosmic sense.

For one thing, reproductive choice grew teeth today - a woman can choose to have an abortion and by golly, she can actually have one, unlike yesterday. Yesterday, a woman could choose to have an abortion, but unless she had money and a babysitter and could miss work and there was an abortion provider near her, her "choice" was meaningless. Living a life where your choices are voided the moment you utter them is (at best) demeaning. At worst it is profoundly dispiriting.

But today is different. When your words are heard, when you say "make it so!" and somebody does, suddenly you have power. You might even begin to think that you have rights, and demand them. You might realize that you deserve more than you are getting. You might claim what is rightfully yours. You might grab hold of whatever it is that is belittling you and shake it until it slinks, shamefaced, to the corner. I feel like a preacher sometimes - take that, Henry Hyde! We will not be moved!

On top of this, I think WE are also shocked by the sudden agency we can dispense. I didn't realize that in many cases, I was not counseling women about their reproductive choices, but empathizing with them about the fact that they didn't actually have any. Now I can give them actual options, and that feels amazing. Several members of my staff have double-checked answers with me that were clearly correct; we, too, are struggling to believe this wondrous thing.

(Don't worry about us too much, though. We'll adjust!)

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.

Stunned

Oh my god, IT'S HERE!

Twelve Hours

I worked twelve hours today, but no money yet. We're hoping for tomorrow. Is this the part where I gnaw off my leg?

Nothing Easy

Long ago, in a galaxy far, far away, the Big Lug came back from a long and grueling rehearsal. I said, "how was your rehearsal?" and he said, "it was hard, but nothing easy ever is." And looked around, as if he wasn't sure who had spoken.

Truer words were never said.

(Stay tuned. We were told we'd have the money by the 15th.)

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?

Figuratively Feverish

Some of the thoughts that passed through my figuratively feverish mind yesterday morning between when I woke up and when I stopped turning and tossing and just got up:

• People collect all sorts of things, even nutshells.
• There is a big crack in the wall on the staircase and one in the front room. I wonder if that means that the house is inherently unstable and could come crashing down around us at any time? Was buying it a mistake? If we wanted to sell, could we? Not bloody likely, I guess, since it's about to crash down around us. Damn.
• Our cat is amazingly pretty and amazingly stupid. Are the two related?
• I don't think I will ever get sick of dark chocolate, but it isn't good in salads, and I like salads too.
• If I started wearing heels on a regular basis, I might learn to walk in the really high ones. On the other hand, why? They screw up your feet.
• If you listen hard, you can actually hear the heat cycling through our radiator vents. My stomach is louder, though.
• I'm going to be allocating a lot of money. What if this money that I am going to be allocating somehow makes me famous? I don't want to be famous! I wonder if I should quit my job.
• Whose nose do I have? It doesn't look like anyone else's in my family. I wonder if I had rhinoplasty before I was old enough to remember it. Maybe it was hideous when I was born and they don't want me to know!
• Wow, I am so tired that I am WIDE AWAKE. I wonder if I drank some coffee, would that put me to sleep?

So last night? Last night, I thanked the powers that be for Ambien.

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?

Miracle Girl

On October 14, I alluded to the story of my second round with brain cancer, and today I went back to the blog I "kept" (sort of) during that series of episodes, so that I could talk about it here. Although I was certainly justified in my reticence, I was surprised to discover that how little time and space I devoted to the discovery of new cancer growth in what I had believed was a cancer-free body. I'm going to try to remedy that.

First of all, you should know that, as I intimated previously, my recovery was considered a miracle. When people look at you with confused joy in their eyes, you want to make their dreams come true. For several years after my first clear scan - one on which the only indicator that I'd ever had a brain tumor was some shadowy scar tissue - I was afraid to say it was over. I struggled to maintain some skepticism, knowing that just because the MRIs were good didn't necessarily mean I would stay well. But time and hope wore me down.

Around Christmas of 2002 I noticed that I was slurring some words. I knew it probably did not bode well, but now I had decided that I was healthy. My first diagnosis (and shockingly successful radiation treatment) were over 12 years behind me. After the five-year mark everyone had seemed to stop worrying as much. Still, in January I figured I'd see a neurologist. That's when I went to Dr. Gentle. This is all I wrote about that visit:

Of course I had regular scans and stayed on anticonvulsants for years. Both became less necessary over time. In January 2003 (as in three months ago) I started having tics and had at least one seizure. I was also having problems with word retrieval and slurred speech. I went to a local neurologist. We'll call him Dr. Gentle, because he is. He ordered an EEG and an MRI and did a neurological exam as well. While he couldn't find anything wrong at first glance, he was concerned. When the MRI came back, he gave me a referral to a neurosurgeon.

Being in the middle of it all over again was sobering. I'd gotten used to being the miracle girl; I was the keynote speaker at the Brain Tumor Society's inaugural meeting in 1990 and again at their Tenth Anniversary Annual Meeting. I had done several speaking tours. I worked on the BTS hotline. I personified survival for many brain tumor patients. How many people was I failing?

I probably would have dwelled on this more had I not had to do a thorough work-up of my brain, which took a lot of time. I had an fMRI (which required me to go to New York for the day) and a PET scan and a Wada test. Here's what I wrote about them, in the order that I had them:

The fMRI results are interesting in the abstract but mean, unfortunately, that I need to have more tests... I have developed language centers in both sides of my brain. Normally a person only fully develops the language center in the dominant side of her brain – i.e., the side opposite to her dominant hand, which in my right-handed case is my left brain, which is where both my previous tumor and this one are located. I seem to using both sides of my brain, not just the left, for language. It doesn’t mean a thing about my linguistic capabilities... but now I have to have a Wada test.

PET scans are ridiculously easy, and basically involve lots of waiting. I was injected with the radioactive glucose and then we waited some more. The idea is that the “uptake” of the glucose will be to the places where it would naturally gravitate, especially to the mutated (cancerous) cells, which are faster growing and as such are expected sites for higher metabolic activity. This metabolic activity is what they are trying to capture on film in the PET scan.

This is not a proper post, just a notice to say: (1) the Wada test went smoothly (2) I have one stitch in my right groin and (3) overnight last night I developed the flu and because I was fasting, I couldn't even have a cough drop. Oh joy. Also my hair is full of EEG lead glue, and I cannot shower until tomorrow. Double joy. (Kvetch, kvetch.) I am (as expected) left-brain dominant, though there is some (also as expected) activity in both language centers of my brain.

Finally, after months of testing, I prepared for surgery. I met with the surgical team all day the day before and small (about ½”) green stickers were applied to my face as landmarks. (I don’t know for whom, but I remember feeling quite self-conscious about them.) My mother and 614 came down from their respective homes, and they and Mr. Husband and I all spent the night before the operation in a hotel near the hospital. It was a nice evening, believe it or not. This is what I wrote before we left:

After all, reinventing oneself, even when forced to, is not probably the worst thing to do. I do it fairly often, maybe more than most folks do anyway, but maybe that is because I have been (how shall I say?) encouraged to at intervals in my life. At any rate, there is something stirring in it, even if it's more a roiling heartburn kind of stirring at the moment than an anticipatory joyous stirring.

After surgery, and as I was recovering from the insult my body and brain had been dealt, I met with an oncologist to discuss what to do about the remaining cancer cells. I think that this may have been the most difficult point for me. I had been so lucky in my first round with cancer that I had assumed that my ongoing fight against the disease would be a series of intense, short battles. Instead, I was confronted with a treatment plan that involved taking chemotherapy orally, at home, 5 days a month for a year.

I did it, of course, but not before getting a second opinion. NIH agreed that this was the way to go. I’m not sure I was completely processing the whole thing at the time, but I finally got it that I would never not have brain cancer. That doesn’t mean that I will always have symptoms – before I started radiation this last summer I didn’t have symptoms to speak of, for example, but learned about the new tumor from a scan – but the cells will never be eradicated completely, and I will have to tend to them from time to time.

This was not my only misconception about my illness. I had this idea (created and reinforced by my first experience with it) that respites from cancer should last at least 10 years. I was terribly disappointed when I was healthy for less than two years after I finished chemo. I have high hopes for radiation, partly because it worked so amazingly well for me last time, partly because (unlike chemo) it incontrovertibly has some effect, and partly because I have enormous faith in the judgment of the Godfather (a.k.a. my radiologist in 1989).

Not that I would have chosen it, but I am actually strangely grateful to have gotten sick a second and third time. It always felt like I was waiting. Now I can monitor myself and perhaps if there is a fourth time it, like the third, won’t get much purchase in my body before it is discovered and treated. I would always rather take the head-on approach.

Um, no pun intended.

Being In The Moment

And let's not forget the moment after the moment after that!