High Winds

The days are ticking off until my next round of chemo. I could really start any day now, but the drugs haven't arrived yet. As I lay in supplies for the week ahead (ginger ale and wheat thins) my anxiety level is rising like the ocean before a hurricane.

We drove onto the Cape when everyone was driving off. The further we went the worse the weather got and the more tied up the traffic was going the other way. People were abandoning their cars on the highway and taking buses to the shelters. Not me, though. I was absolutely determined to be with my family when the storm broke, and I dragged the Big Lug (my boyfriend at the time) with me. The wind was so high that the windshield wipers caught on the edges of the doors at the ends of their back-and-forth, and we had to open our windows and lean out to push them back.

We got there, though, in the calm before the storm, and watched the water in the cove rise. I insisted on going skinny-dipping before it started to pour; I could feel the water seething around me. By the time the hurricane hit - a hurricane, by the way, ignobly named "Bob" - we were safely inside, watching the storm through large masking tape Xes on the sliding glass doors. We left the lights off and bore witness to the grand splintering and falling of pines that had been there before most of us were born.

When Bob was done, we ventured out to clean up the property. That cleanup was a project - things were not the same for days, in some places, and in others never returned to the way they had been. We made huge piles of branches that had been stripped off the trees. Only one of our cars had a tree on it, and it was a Jeep, which was the only one that wouldn't have been crushed. As I recall, nobody was allowed to go out alone, and one of my cousins (who has towered over me since he was about 6) and I went to check on one set of elderly neighbors. When we got no answer at any of the doors or windows, we were a little concerned, but then someone told us they'd gone to the shelter at the high school.

We had water, because we had a well, but no electricity. And my grandmother had a very fancy, all the bells and whistles, electric stove. That week we learned to cook for a family of nearly 20 on an open fire and a Weber grill. After supper we'd put the kettle on the hook hanging from the chimney and heat water to wash dishes. The first night it was charming, the second night quaint, and I don't think any of us really relished the sight of that kettle boiling on the 6th night.

But we were lucky. We didn't lose anything much personally - a few trees, the berries that were on the bushes. The hurricane that is hovering over me now feels much more destructive, though I am assured that it needn't be. I want to believe, I have to believe, that when this, too, has passed, there will be no worse injury than Bob left in his wake.

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.

Imelda

I need new shoes.

Is there any more promising, more scintillating, more tantalizing statement in the English language?

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.

Movin' Right Along

In The Muppet Movie, Kermit-the-Frog (which is how I always think of him, Kermitthefrog) leaves the swamp to find his fortune in Hollywood. The film is full of bad jokes and worse puns, but has a poetic undercurrent of the bittersweet but unavoidable journey from tadpole to frog. Subsequent Muppet movies tried, but just didn't have the same cachet.

As Kermit-the-Frog bicycles from his birthplace, he is picked up by Fozzie, a stand-up comic. Fozzie is "a bear in his natural habitat - a Studebaker." They gradually encounter the Muppets who started it all, from Janice and Rowlf (who was the very first Muppet, and was made for Purina Dog Chow ads) to Big Bird. The Studebaker, after numerous misdirections, gets to Hollywood. They have their trials and tribulations, but at least they are not standing still.

I've been thinking about this movie because I spent last week preparing for, and last Saturday actualizing, a huge move. Okay, it wasn't that huge. My office moved five blocks. I think it would have been as traumatizing no matter where we moved, however. Because what shakes one up, it occurs to me, is that for at least a day (and for some of us much longer) we do not have a place.

It's as if you prepare and prepare to be shot out of a cannon. Even with the best cannon-shooters, even with the assurance of a soft landing and plenty of space and a yummy meal in the new kitchen (even though the kitchen table is still on a truck somewhere) it is unnerving to know that you are not in the old space, and not in the new. You are temporarily nowhere.

When I was a child I spent many of my summer days with my maternal grandparents. They lived near a small beach on a cove, and we swam there. (Isak Dinesen said "the cure for anything is salt water: sweat, tears or the sea." Well, almost anything.) I remember losing my footing on the seabed once or twice, and panicking. This was strange because I was an excellent, if inelegant, swimmer. But there was something about having a purchase on land and suddenly losing it that was terrifying. It is the same feeling I have had since I started putting things in boxes for this move.

I suppose we tell each other stories like that of The Muppet Movie - or Star Trek, or the Argo (see above) - to make sure that we remember that the ground is not gone, just momentarily unavailable. I try to keep in mind that the flip side of anxiety is excitement, and live there instead of biting my knuckles. (Which I actually did, for the first time in my life, last week. Didn't draw blood, I'm happy to say.)

Yet, I am glad that I am getting to live this so thoroughly. This is what living is all about. We wish we had more control, but we don't and we won't, and we need to practice that. We assuage our fears with laughter - hysterical laughter sometimes, but laughter nonetheless. I am grateful that I still find things hilarious much of the time. And in that light, as the Swedish Chef announces, "the flim is okee-dokee."

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!

Wet Feet Make Me Cranky

I came home on the bus tonight in the pouring rain. I mean, truly soaking. When I got on the bus it was still only a sprinkle, but when I got off, it was a deluge. I ran through the puddles feeling aggrieved and, well, wet. And I thought about all the things that seemed like they were so fun when I was a little girl and how I could not wait until I FINALLY GREW UP so that I could do them whenever I wanted.

I am not likely to have children at this late date and frankly, I'm not sure I would be a good mother now - I have become used to my own company (and Mr. Husband's and that of the Ravening Beast) and while I adore my nieces and nephews, I no longer pine for a child of my own. I love and fiercely defend my freedom to travel at the drop of a hat and eat ice cream for dinner. And yet, I generally don't do either of these things.

In fact, I do not want to do most of the things I thought adults had the enviable freedom to do. I would stay up late more, but I need to get to work in the morning, and lately work has been making me so anxious that I have been waking up early. Then I am so wired that I cannot get back to sleep. I don't travel all that much because I can afford neither the time nor the money. I cannot eat ice cream for dinner, because I crash after the sugar wears off, and that's no fun. And I love, love my life, even without trips to Cairo on the Orient Express. (Which, incidentally, I think I would also enjoy.)

But. Here's the "but". If I did have children, I hope I would sometimes let them run through puddles and get thoroughly soaked. And have the occasional ice cream dinner. I would want them to remember that they had a crack at those things while they still craved them. So tonight, after I got off the bus, when I was already soaked to the skin from head to toe, I jumped into a puddle with both feet and made a big

SPLASH!

And then I came home and became a grown-up again.

Sleep

Today I got Many Things done. And you will have to wait to hear about them because I cannot stay awake. I will say this: moving is a bitch.

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.

Dying

I was first diagnosed in 1989 with the cancer that I still have. I never imagined that it would be such a long road - I knew it would be difficult, maybe even painful, but long didn't look possible back then.

That didn't stop me from researching and becoming a card-carrying member of the Hemlock Society, and making sure that I had a living will (I have had one ever since and update it regularly, and you should too) and a power of attorney for health decisions. Hemlock has now changed its approach and partners "with the national leader in aid in dying, Compassion & Choices" but has kept the same tagline: good life, good death.

My grandfather had what I thought was a pretty terrific death. He did not die of a disease that brought him pain or other physical suffering. He was able to have a hospital bed in the bedroom where he had slept with my grandmother for years. In his last weeks he was tended by his beloved daughters and the devoted wife who had witnessed most of his life. He died one morning as the sun rose over the bay where he had so loved to sail. And although I miss him, his death did not make me sad.

Nobody, and maybe especially Joe or Josie Average in the U.S., wants to think about death. The American tagline could be good life, I'm going to live forever and also I will always be young. But we are all going to die, and we spend so much energy turning away from it. It makes me wonder how we can possibly keep it up. Unfathomable mysteries often are terrifying, but this is one that is absolutely unavoidable, and it is manageable if we give ourselves permission to ponder it.

It isn't that I don't love others, or don't want to deal with the suffering of others, or don't believe in the body's wisdom about when it shuffles off this mortal coil. I don't want to kill off perfectly healthy people, but I do think that this is the type of decision - one profoundly rooted in the essence of belief and personality - that no person should presume to make for another. Only you know how much you can, or for that matter, want to take.

One of the reasons that this is on my mind is that Jack Kevorkian, a.k.a. Dr. Death, got out of jail at the beginning of this month. He's dying himself, now. (I basically object to the word "dying" because it is hysterical and inaccurate - you're alive, and then you die, and you're dead - but in this case it seems poetic.) Although he is obviously a showman and might be as crazy as a loon, maybe only someone with those qualities would have challenged the American approach to death. Elisabeth Kubler-Ross was a bit nutty, too; in her later years she was committed to some things that I find hard to swallow, but her work helped to create a movement.

Whatever their flaws, I am grateful to these pushers of the envelope. Thanks to them for being crazy for all of us who want to have a self-determined existence.

Mr. Husband

Conversation at work today:

Colleague: I just read part of your blog. It's sweet!
Me: Thanks...
Colleague: I think it is so cute that you call your husband "Mr. Husband" in your blog!
Me: But that is really what I call him.
Colleague: I know! In your blog! It's adorable!
Me: No, really. That's what I call him.
Colleague: You mean, you go up to him and say "hi, Mr. Husband!" Yeah, right. You are SO FUNNY! I just love it.
Me: I swear. (indicate crossing my heart)
Colleague: You do not.
Me: I do.
Colleague: Oh. (pause) That's not funny. That's weird.

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.

WARNING

OH POO!

Well, whatever you do, don't try to leave a comment.

My Friend Biagio

After much agonizing, I turned on the comments today. It may be a mistake. And more interestingly, there are actually quite a few ways in which it could be a mistake, of which these are just the two extremes:

1. Nobody will write a comment. They will not care. I will feel lonely, unloved, unread, and unappreciated. I will have to drown my sorrows in really good chocolate from Biagio and retire from blogging.

2. Hundreds of people will write comments. They will be demanding. I will feel overwhelmed, pressured, resentful, and frightened. I will have to drown my sorrows in really good chocolate from Biagio and retire from blogging.

However, I have gotten enough nice reviews from people I do not even know - mostly, granted, through my mother, which makes them a bit suspect - that I am willing to take the chance. So love my work, or don't. But if you have something to say about it, I've decided to try listening. (I am so radical sometimes!)

And thank you for the chocolate. (Image shamelessly stolen off Biagio's website.)

More

Mr. Husband and I are art hounds. He really is responsible for all of my much-savored forays into the local art world. I am greedy for color and light, hue and pigment, shape and stroke. But until I met Mr. Husband I was somewhat lost.

Mr. Husband credits his long-time co-activist friend Mr. Curator with his interest in local art, and certainly Mr. Curator is in the know. But when I met my first Linn Meyers, it was already on his wall. Since then we have purchased six more, for a grand total of seven, and we have accepted that (now that she has shown her work at the Corcoran Gallery) we are not likely to be able to afford more of her work.

But oh, the lines she draws! The infinite patience - something I always admire in others but am unable to manufacture myself - the eye, the balance, the way the work shifts as you move around it - I am enthralled. I am a child again, wide-eyed and awed, wondering, how did she do that? These are the moments that suspend time and leave me hungry for more living.

My baby sister's first word was more. I love that, and wish it had been mine. (She actually said "moy" but we knew what she meant when she reached out with her tiny spoon.) As I do battle with this disease, which threatens to ravage my brain, and these treatments, which threaten to ravage my sanity, I just keep thinking MORE. I want MORE. More years. More laughter. More tears. More books and art and music. More evenings watching bad TV and mornings fighting for the covers. More walking into walls and tripping over my tongue. More misunderstandings and far more understandings. MORE.

Chemo Count

Me: 1.
Cancer: none.
Not having to take it again for 25 days: Priceless.