Inside Her Brain...

Abigail, who let it it be what it was, neither more nor less

Aine, who did it all over again with grace

Alex, who accepted a stepmother with cancer as easily as he accepted a stepmother barely his senior

Alicia, who made Baltimore more than just the Hospital

AFH, who swallowed her fear and has never, ever in my life, let me down

Bruce Rashbaum's whole office staff, who treated me like I was their only patient -- and especially Kelly, whose magic powers include the ability to draw blood painlessly

CJRM, who remembers

Carla, who has been through much worse, but still commiserated

Cass and Kevin, who made sure I never felt alone

Christina, who never even considered giving my job to someone healthy

my Colleagues, especially Tanya and Kelly, who were infinitely flexible and non-judgmental

David at the Wayside Inn, who made us feel welcome when we were stuck

Dawn, who made me her family immediately

Dar, who wrote the soundtrack and sent gifts from around the world

Diane, who made everything come up roses (and brownies!)

Diane S., who had a mass said for me

Dr. Sea, who helped me chart my inner ocean (see January 30 of 2004) and Dr. Fish, who helps me swim through it

Ellen and Jim, who were accepting and warm in spite of what I was putting Bill through

Glenn, who refused to give me up

Great Panes, especially Len, who collaborated on and installed our stained glass transom

Herrin and her mother, who inspired my determination to heal

Jephta and Dan, who sent the bonsai, and especially Dan who was there when I arrived

Jim and Cheryl, who had faith in me

Judith L-G, who reminded me of times when I had more strength

Judy, who made me a dogmother, and challenged my self-doubt

Kat, who kept me going with warm cards and care packages

Kate B., who was generous with her friendship in spite of the timing

Kate H., who put her energy into the Run for a Cure and organized a team in my name

Kathryn, whose little gifts and calls gave me great joy

Lee, who always had a reference

Legal Seafoods, which brought home a little closer in moments when I needed it

Linda and Michael, who visited, hosted, and empathized

Lisa, who gave me a tadpole

Lynn, Lucy and Mary Maxwell, whose love for my mother is immeasurably comforting to me

Marcy, whose antics keep me amused and whose loyalty keeps me humble

Margie and Scott, who visited and called when they were themselves busy with other things

Martita and Chris, who showed me how very much they value our cousinry

Mary, who was here, and who scraped the blood out of my hair

Matthew, who came even further this time

Merle, who snuggled with majestic idiocy

Michael M. at Simmons, who sent a pendant and prayers

Morgan and the Gang of Five at Wellesley, who dedicated the power of their youth to me

NAF Hotline Staff, especially Cara and Kate, who took over my work for a few months

Nancy, my "wife-in-law", who rooted for me anyway

Patrick, who still believes

Pop and Jane, who enabled and blessed my keening

RMF1, who gave me the courage to give her courage

Scoot, who weathered it again

Sigrid Ann, who always makes room for who I am

all the Starcks (David, Renata, Philip, and Teresa) and Bug, the kitten, who provided sensitive hospitality before the Wada test

Tammi, who didn't need explanations

The Treasury Department, who sent us on the healing trip to West Virginia

Tony, who sent funny emails and words of encouragement

Zewde, Seif, Hezekiah, and Jia, who continue to remind me that the world is always being discovered

... and of course, my beloved husband, Bill. Te amo.

Why? Because it is time. This chapter is, praise be, over.

It was this week in 2003 that I started having tics in my neck and head and decided to go to Dr. Gentle. That visit set in motion a veritable saga. And now... I have finished the year of chemo, and although I'm told it will take another year to get back to my normal energy level I feel better all the time. I am getting used to a life without toxic drugs. (I recommend it.)

I have a "special thanks" section to write and that will be the last thing to show up on this site. But I will state now that I am proud, and lucky, to be able to say that if I had to do it again I'd want it to be just the way it was. Although I doubt that anyone enjoys discovering and rediscovering the fragility of their life and its potential meaning, there's a crazy energy that accompanies it. If you are impermanent and possibly inconsequential, why not live for the moment? To quote Dawna Markova,

I will not die an unlived life.
I will not live in fear
of falling or catching fire.
I choose to inhabit my days,
to allow my living to open me,
to make me less afraid,
more accessible,
to loosen my heart
until it becomes a wing, a torch, a promise.
I choose to risk my significance;
to live so that which came to me as seed
goes to the next as blossom,
and that which came to me as blossom
goes on as fruit.

Peace out.

My cousin and her husband called last night to wish us a happy anniversary today. They have honored our marriage from the beginning with quiet support and joy, and the way they treat each other in their own marriage is a model for me. There is an profound understanding that the partnership they share is the context of their lives, though not the action of every moment.

This year has tested us. Our actions and reactions have morphed in ways we couldn't have foreseen. Heightened awareness of mortality does that. But if I am a little more physically cautious, and Bill is a little more anxious about me, we have also become less petty and less barricaded. And what is life for, if not for celebration -- the celebration of being gloriously, vividly, still alive?

In the words of e.e.cummings,from since feeling is first (1926):

we are for each other: then
laugh, leaning back in my arms
for life's not a paragraph

And death i think is no parenthesis

I'd like to say I am not superstitious. Sadly, it would be a lie. I don't walk under ladders or whistle in theaters. A Danish person once told a friend of mine that he wouldn't predict a bad outcome because he didn't want to "paint the devil on the wall." Apparently he was surprised that it didn't translate better, but I love the image, and it makes perfect sense to me.

My mother says that when she and her sister were girls and aware that their mother was pregnant again, they would sit crosslegged facing each other, hold hands, and chant "we wish it is a boy! We wish it is a boy!" They did this because they knew that a boy would completely unbalance the household, and this ritual would ensure that their mother would have another girl. She did, which only served to reinforce the point.

About once a week (rarely more, sometimes less) we have Chinese food. This generally involves fortune cookies. I recently found out that they are not actually Chinese:

Fortune Cookies are not known in the Chinese food culture, and it wasn't until the 1990s that the fortune cookies actually arrived in China. They were advertised as "Genuine American Fortune Cookies." Some historians think that the inspiration for Fortune Cookies come from the 12th and 13th centuries when Chinese soldiers slipped rice paper messages into mooncakes to help coordinate their defense against Mongolian invaders. According to legend, the Mongolians had no taste for lotus nut paste. Because of this, the Chinese hid the message containing the date of the uprising and the instructions coordinating the uprising in the middle of their Moon Cakes (replacing the yolk with secret messages).
--from What's Cooking America

Here's the problem with fortune cookies: they rarely contain actual fortunes. One of mine (yes, I do save the ones I like) reads You make people realize that there exist other beauties in the world. Although I appreciate the sentiment (I think... I'm not entirely clear on what it means) it is not by any means a fortune. It is an observation, specifically of me. Another one I've held on to because of its relevance to my marriage is Wisdom is acquired by experience, not just by age. More cosmic, yes, but still not a fortune!

In fact, the only real fortune I'd received in a fortune cookie until recently was a novelty one that a friend gave me for Christmas. It read You will buy new shoes. Now that's a fortune worth getting; the only thing was that she had written it herself, and anyone who knows me knows that I am almost always on the verge of buying shoes. It was a safe bet that it would come true.

However, the other night we had Chinese food delivered (I love living in a city!) and they brought cookies. I forgot about mine until the next day, and brought it to my study to eat while I perused my email. To my shock, the little slip of white paper that slid out carried a genuine fortune! It reads (and I quote) A nice cake is waiting for you.

I have been looking ever since for a nice cake. I haven't found it yet, but no time frame was specified, so I'll keep on looking until I find it. Honestly, I haven't ever thought too much about cake, but now I do. Where will it be waiting for me? And more importantly, will it be chocolate? Such goings on Inside Her Brain...

Two of my favorite staff members are leaving - actually, one is already gone, and one just gave notice. (Also actually, they are all my favorite...)

I always wish we could offer them more money (not unlike the fact that I wish we could offer me more money!) but I try to make up for the lack of remuneration with career advice, small loans, cast-off furniture, essay consultation, and glowing references. I am so honored to share their lives for even a short time.

This can be a dark world sometimes. I've learned that light comes from unexpected sources; from the earnest words of children, from the click when one connects to another human being (even if it is only in passing), from the wind and the earth and the water and the fire. Especially, for me at least, the wind and the fire.

I met the parents of one of the departing women last week and said, "your daughter is the light of my life." These women are like flames for me. I love the water, but it is the wind that scares and excites me and the fire that flares inside me. And the light, that light that brings together passion and clarity, comes from the fire.

Her Brain will miss them.

They say the third time's the charm. I hope that's true here. After I wrote about Dr. Sea, I felt incapable of writing again. Now that Bill has blogged, though, I feel free of the tension that kept me silent. And here we are again.

I could hardly let this day go by unnoticed. I brought a huge amount of ice cream with me to work today and invited my co-workers to share it with the understanding that we were celebrating life's sweetness. It is a sweet life -- sometimes so sweet that I don't quite believe it.

Tonight Bill and I went back to the Legal Seafoods across the street from my neurologist's office. It's where we ate the night I received my initial diagnosis last February. We ate good food and drank red wine and talked about our days (me at work, him at home) and it was so utterly magnificent just to be there together. To be looking back at the year with relief rather than forward with trepidation. As I once wrote somewhere entirely else:

we lean into each other's words;
we rest against each other's truths.


Someone once told me that he could find out all he needed to know about a person by asking that person whether or not she thought she was lucky. I didn't completely understand how to decode the answer, but I saw that it was a crucial question. So perhaps all anyone needs to know about me is that I am lucky - so lucky! - the luckiest person I have ever known - and leave the rest to Her Brain.

We've both been intensely aware of the approach of May 14, and now it's here...one year since Rachel's surgery. She'll speak for herself but here's some of what it means to me:

• A year of progress. On May 14, 2003, we were in the hands of others in a world that was totally alien to me. Then she was taken away, and eight hours later she was unconscious behind a battery of machines and tubes. She came home three days later, almost helpless and heavily medicated. Without going through all the later stages that are imprinted forever on my mind (read this blog!), I notice every day now that she is as strong and self-sufficient as ever with her mind and personality intact.
  
• A year of memories. Some examples stand out:
  
  • Ann's and my big scare on her third day home (see the May 22, 2003 posting - scroll down to "Team effort"). Rae has no memory of the episode but it haunts me still.
    
  • On June 3, her first outing beyond our neighborhood.
    
  • The evening - last July? - when she showed up near collapse at our door. She'd decided to walk home from work, and the last uphill did her in after months of limited activity.
    
  • The return of Harry Potter. At some point in the summer, she resumed reading The Order of the Phoenix to Marcy and me. We finished just a month ago.
    
  • Ellicott City. Bad medical news made us cancel a September trip to the Cape at the last minute. The disaster turned into a delightful four days: David's wonderful breakfasts at the B&B, sightseeing, and our beautiful stained glass thanks to Len and his colleagues at Great Panes. See Rae's belated November 11 post.
    
  • Her birthday, a normal day which was in itself a huge change from April 8 last year - you'll need to scroll down.
    
  • Barcelona. We celebrated today's anniversary, and her birthday, with a trip to Spain April 18-26. Except that it was between rounds of chemo, the trip had nothing to do with illness or even recovery - just celebration, as you can see in our photos.

I could happily have done without all these uplifting experiences in exchange for her not having become ill at all. Still, we feel stronger together now as a result, and I'm looking forward to what we'll accomplish in the next 12 months.

What can I say about Dr. Sea? That psychiatrists are not supposed to die? That I am intensely grateful for the fact that we were winding up our collaboration anyway, that we were searching for a creative ending to four years of potent alliance? That I am bereft in a way I have never been, a way that I have been unable to describe in any language I know, spoken or written? That when he didn't show up for our first appointment in 2004 I knew immediately that he had died, although he hadn't, and in fact was supposed to recover completely until the second stroke ten days later? (I have never been one to envy those who know what they cannot know, and this knowledge confused me deeply; I pray that my aunt is right in saying that it is not likely to happen again.)

Here's what I know: he was a force unlike any other in my life, as influential as the people who raised me. He was willing to get messy slogging through the swamp of my life, and seemed to relish the mud between his toes. He reminded me incessantly that love and hate were always in evidence, all appearances to the contrary notwithstanding. He also lectured me repeatedly about the "enormous endowment" I possess (he wasn't talking about my bust), which makes me both powerful and vulnerable. He yelled from behind me, when I was tentative, the things he felt I could not say -- "fuck you, mister! Fuck you, you jerk!" -- which always cracked me up. And then there were the times when his office was the only place I could sleep, and I would drift off in the shelter of his presence.

When I wiped the tears from my face, or woke from my slumber, or my laughter died down, or my time was up some other way, I would rise from Dr. Sea's couch. He would take my rather small hand in his enormous paw, look intensely into my eyes, and say "courage".

Courage. It will take some of that for Her Brain to let him go.

Just a quick note to say my latest scan, done yesterday afternoon, looks a tiny bit better! As soon as I get my blood drawn for baseline I get to start chemo again. Yippee! (I know. It's sick, isn't it?)

Dr. Smile's nurse said, in his inimitable French accent, "thees ees, yes, quite great!" Her Brain agrees.

...is on TV downstairs. Bill is watching it. I am upstairs trying to justify not watching it. Part of it is personal. I get so angry and feel so hopeless when I hear that man talk. And I have Bill, which means I don't absolutely have to watch it, since if anything truly crucial happens he'll let me know. (I suppose if there was nobody who could keep me informed I'd have to pay more attention.) Then there's the fact that nothing he (W, not Bill) says is quite the way it is -- a problem common to politicians, whose speeches always seem to pose "facts" at an almost unrecognizable slant. It reminds me of trying to identify landmarks from an airplane. I don't see them that way often enough to get a good sense of how they go together, though I may know the area like the proverbial back of my hand when I'm on the ground. I like to be able to recognize the terrain.

On the other hand, what do we honestly recognize in each other's described perception? I remember realizing as a child (I must have been around six) that what I called yellow and what another person called yellow might be entirely different conditions. And what was worse, there was no way to know if one's yellow was different from the others. That was my second inkling, I think, of the limitations of language. The first came when I was younger, maybe five, when I was staggered by the thought that when I referred to me I meant myself but that when others referred to me they didn't mean Rachel, they meant themselves. In other words (hee), words became endlessly changeable by context. I recollect these discoveries vividly. Each rocked my sense of stability -- and piqued my curiosity.

At about the same age that I discerned the yellow problem I had a lunchbox that fascinated me. Like the language revelations, my fascination had to do with perspective. The lunchbox was made of made of pale pink vinyl. On the cover was a picture of a little girl walking to school -- one of those classic schoolhouses with the little steeple -- carrying the lunchbox. On that lunchbox was the same picture. And on the lunchbox in the picture inside that picture was the same girl carrying the same lunchbox. My mother kept the lunchbox on the counter in the pantry, and I can recall standing in front of the counter (I was just big enough to see over it) and staring at the illustration as if somehow if I looked hard enough I would see the infinitely tiny little girl and her infinitely tiny lunchbox. I knew she was there, even though my eyes never had enough clarity for me to see her.

Speaking of images... My MRI scan was cancelled. When I started this routine, it never occurred to me that the scheduling the scans would be such an annoyance. Nor did I consciously register that putting off a scan meant putting off the next chemo cycle. I've now been doing this since August but have only actually completed four cycles of chemo. I'm slotted for at least twelve, and each time I have to push one back it is more demoralizing -- especially since I was sicker the last time than I've been any other time. Oy. At least the state of my own union is excellent. I don't know how I'd make it without Bill.

We rescheduled, finally, for next Thursday. Here's hoping for a markedly improved perspective Inside Her Brain...

...and not a moment too soon. It is always good to see family and friends, but I'm becoming more and more of a homebody as I age, and I find being a guest exhausting. I love our neighborhood, I love the light in our kitchen, I LOVE our bed (and have been spending much time there), I love our cat, I even love the urban noises that we hear at night and the smells that waft out of the local restaurants. Sometimes I think the whole purpose of going away is so that you can come back. You know, the Dorothy lesson: if you can't find it in your own back yard, you never really lost it to begin with.

Tomorrow it is back to work, with some large changes in my department. It will be a time of adjustment, but I will try to roll with the punches. Thursday we are going to Johns Hopkins for MRI scans and a meeting with Dr. Smile. I'm hoping for good news. If nothing else, it is never boring Inside Her Brain...