BRCA2, ripples

     Some of you have likely surmised what's been going on behind the scenes ever since we discovered my BRCA2 gene status last March. Most people, though, don't make the connection: each of my three beloved children has a 50% chance of having it, too. The same goes for my beloved brothers and my beloved sister. And if they have the mutation, their biological children have a 50% chance of having it, too; the ripple spreads thus.
     My genetic circle of six needed to get tested, and we've been working on it for nearly a year.
     This gene is nothing to sneeze at. You may recall that a woman so endowed has an 87% chance of developing breast cancer, a 67% chance of ovarian cancer, and a 20% chance of pancreatic cancer, all by the age of 50. For young women, a positive test means extreme vigilance, mammograms and MRIs as often as you buy bananas, and ovaries that get whisked away as soon as you're done birthing children. Some young women who are BRCA2 positive have their healthy breasts removed, sometimes even before nursing.
     For men the risks are not as dramatic, but still involve a 20% chance of prostate cancer and a greatly increased chance of male breast cancer. It's not good, this mutation.

     Step one is actually not medical: you start by buying life insurance. If you test positive, that shop closes: you are uninsurable for the rest of your life.
     Kevie was the first to get tested. Already working for the State Department, he is insured up the wazoo -- though his wazoo was not technically in jeopardy, to our knowledge. Out in California, to get genetic testing you just spit into a cup and they send that elixir off to a lab. Why we haven't invented that outside of California, I cannot imagine. His was our first good news: Kev is negative.
     Then came Lee, who was also set with life insurance, but seemed to need vigorous and prolonged cajoling, which I proceeded to offer. Recall, dear followers, that his wife, mother to their three daughters, died of cancer four years ago. You can see the potential ripples, can you not? After months of ineffective sisterly cajoling, I clued in my beloved nieces (who hadn't realized the implications for Lee and for themselves), and set them on their dad. He snapped into action fast, and I felt dumb for not remembering that Lee sometimes responds to vocal volume, especially in the form of a collective hue and cry. He tested negative, and we all breathed another deep sigh of relief.
     For months, El was thinking about it. El was looking into it. She and Rob started by getting more life insurance.
     My three kids, meanwhile, were all working on getting life insurance of their own. Ting and T'ai both easily jumped the various hurdles involved. Yani, meanwhile, ran into a series of extremely frustrating snags in getting life insurance, and more knots with the testing. Her whole process became a gaggle of snags and knots. It is not a good feeling to watch your 22-year-old wrestle with life insurance and health insurance companies. It's a little bit of an unfair fight.
     This fall, though, one by one, through teary, joyous phone calls, the kids shared their results. Yani: negative. Ting: negative. T'ai: negative. All right, T'ai texted his news. But I was teary and joyous.
     Do you know, followers, the odds of these happy results? Lee, Kev, T'ai, Ting, and Yani, all negative? One in...gee, I forget how to do that math. One in lots. One in so many that you begin to think something weird was up, that maybe they had made a mistake with my test. Or that there was just something weird about me. That felt strange, yes, but so much better than having someone I love, as I do these six people, share the mutation.
     We were holding a lottery ticket and each number that was called out was on our card. One more number and we would win. We had begun to feel almost certain of it.
     Last week Ellen got her call: she had tested positive for BRCA2.
     I am just so sad. I wanted to be the only one. I wanted everyone else to be safe, forever.

Fitbit Fitbit, booooo hissbit

Below the earlier entry about my Fitbit, Ravi posts a comment in which he makes a comparison between the Fitbit creators and stinkpot poopyhead Jabba the Hut. You may wonder why the out-of-the-blue hostility toward the Fitbit company, particularly from such a sweetpot like Ravi, whom, if you have the pleasure of knowing him, you know to be deeply gentle and loyal. Perhaps, as you see in his comment, Ravi's loyalty trumps his gentleness, ever so slightly. That's okay with me.

What Ravi knows is this: several months ago, I typed up a very carefully crafted, extensive proposal to the folks at Fitbit. I raved, artfully, about their product and its impact on my own health and well-being. I made a compelling argument for its potential value to schools, and suggested they work with me to get independent schools to buy in to discounted purchases of their faboo product. There are so many possibilities for this, and I wrote with equal parts enthusiasm and specificity about what could happen: math students calculating and tracking numbers of steps within their school (how long might it take their school to walk to the moon? at what pace? what about their walkers with bigger strides?), departments competing, grades competing, faculty versus students competing, schools competing. Deerfield v. Choate? Hotchkiss v. Taft? Are there more passionate independent school rivalries in our midst? I think not. And think of the press releases for the schools and their visionary wellness programs! While they're at it, the most important thing would be happening: they would be building greater health within their community.

I tried to establish my credibility with them: how I know independent schools and their students, and even have a school lined up (Laura's) where I could get things started. I explained exactly how all this could be done -- step by step, so to speak. I proved that I was a devoted customer of Fitbit, and gave them my step count up to the time of my writing to them. It was a good number -- almost as many steps as one of them had (you can see these things on the site). He might have reached Utah before me, but not by much. Actually, he's in San Francisco, but you know what I mean.

I sent my envelope, addressed to the two handsome young men who head up Fitbit. I sent it Special Delivery, Certified, sign-here-saying-you've-embraced-the-mail-carrier to prove you've received the letter. They received it. They signed. I kind of hope they embraced the mail carrier. They tossed my proposal in the trash and, quite unlike the kind soul, the kind cartoon editor at the New Yorker so many years ago, never responded to me.

Laura is angry at them.
"I'm going to write to them and tell them they stink!" she says.
"Nah, La. It's okay. They have bigger fish to fry."
"I'll fry fish on their faces," she says, employing our customary retort of last resort, used to punctuate a conversation with something you really can't argue with.
"Maybe they don't think a 57-year-old, breastless, graying, shrinking woman is who they want representing their fitness product," I suggest, stung but trying to accept this very real possibility.
"I don't care. It stinks not to respond to you at all. I'm going to write to them and tell them they blew it."

She hasn't, and I don't think there'd be much point, but I appreciate the spirit of support. Truth is, I'm getting good at failure. It's one of my greatest successes: to launch these lead balloons over and over again and still think the next one might sail into the air. Or, even better: sail into their faces!

10,000 steps a day or bust

About a year ago, Laura and I bought Fitbits, little pedometers that sync with your computer and tell you more than you want to know about how active you've been. It cajoles, silently, if you haven't moved in awhile. Like this:

The Fitbit fits in your pocket or, the instructions say, on your bra strap. I remember those. Bra straps. They were a pain. But it was nice being someone who had bra straps.

When I got my Fitbit, I promised myself to take 10,000 steps a day. For me, at my height and step length, that's a little over four and a half miles. I've exceeded that goal all but 4 or 5 days in the past year. I took off a couple of days after the hysterectomy, and a day for thumb surgery. La made me.

But overall, I am a walking fool. My days are constructed around my steps; I book clients with an eye to when I'll be able to get in a long walk. Ask anyone in Farmington Village, and they will be glad to finally have the chance to acknowledge that they see me walking all the time, and they've wondered about it. Let me know what they say. I can remember the walkers I've seen in my lifetime -- you know: the ones who are always out walking, and you just wonder what's up with that. Like, if they're okay.

I am okay. I'm a little compulsive about getting my 10,000 steps, but it works for me. I'm determined to stay healthy, and it helps me to have pillars to my days. In fact, I have a little poster on the fridge that says:

As of tonight, my Fitbit tells me I've walked 4,742,300 steps in the last year. Doesn't that sound like a lot? It's only about 2,000 miles. When the Fitbit site gave me a little virtual badge for having walked to the border of Utah, or something like that, it didn't seem like much of an accomplishment at all. Who wants to walk to Utah? You want to walk to the moon, right? I have 236,900 miles to go to get my moon badge.

On these wicked cold days, though, it's tough. The day before yesterday, I just couldn't. I just couldn't go out in the cold. But the Fitbit was counting for me, counting on me. So, as I've done on a few days of unbearable weather in the past year, I walked 10,000 steps in the house.

Do you know how long four and a half miles is/are inside a house? Those dotted kid trails in "The Family Circus" are nothing compared to logging four and a half miles inside your house. You walk through the family room, around the office, through the living room (stopping to bounce on the trampoline, mebbe), around the dining room table a few times, through the kitchen, maybe up the back stairs if you're feeling game, then back down the front stairs and back into the family room. Then repeat. As I cooked and then washed dishes, I ran in place. I opened the mail, running in place. It felt endless. After half of forever, I checked the Fitbit: 5340 steps. Are you kidding me?

Laura has her Fitbit, too, but she doesn't have the same issue with completion. Every now and then she remembers to stick her Fitbit in her pocket; sometimes it's charged, sometimes it's not. I envy that ho-humness and she envies my determination. But these are the times when it's kind of a good thing not to have Laura home, you know? I think this might actually drive her up a wall.

Back when Bear was alive and chipper, he was witness to a couple of these strange days. He'd follow me around the dining room table...the first 6 times. And then he'd be, like, screw it. She's obviously not going anywhere. 

cross? sure.

Of late, Laura and I have experimented a bit with different ways of communicating. Maybe it's the distance during the week. Maybe it's having spent 20 years together. Does every couple do this at some point? Suggest they try a whole conversation with only one word at a time? Try singing a whole conversation?

I remember thinking up a cartoon about couples and conversation, back when I was in high school. Had I any drawing ability, I would have sent it in to the New Yorker, despite the fact that they had rejected a cartoon I had mailed in when I was maybe 13 (when it didn't matter so much to me that I can't draw). Back in those days, someone actually wrote to you to tell you your cartoon had been rejected. I had no idea, of course, that cartoonists present their drawings on schmancy boards in pristine ink drawings. No, mine was a blue felt tip drawing on a piece of scrap paper. Here is a replica -- same pen and everything -- of the drawing I mailed to the New Yorker circa 1968:

And I got a nice rejection note. Can you imagine?

The cartoon I thought of but couldn't draw was of two people looking at each other across a restaurant table. One says to the other: "Do you think we are in the middle of a comfortable silence, or do you think we've run out of things to say?" I still think some good cartoonist could make it work.

Laura and I have comfortable silences, and we've yet to run out of things to say. But we do sometimes play with communication styles. Mix it up, fogey style. So on a recent walk, Laura says, "Let's see how long we can go only using one-word sentences."
"Okay!"
"Cross?"
"Sure." [we cross the street]
"Supper?"
"Leftovers."
"Enough?"
"Plenty."
"Careful!"
"What."
"Poop."
"Thanks."
"Nice."
"What."
"Sky."
"Yeah."
"Snow."
"When?"
"Week."
"Huh?"
"Next."
"Oh."
"Avoid."
"Huh?"
"People."
"Okay."
"Turn."
"Okay."

So it went for a few miles. There was a lot of "huh" and "what" and maybe that ended up as cheating, since that way you can kind of cobble together a whole thought. But it made the walk a little quieter and cozier.

That night, still on a roll, I tried a different technique. I tried to express an important and fairly complex thought with my mouth full of toothpaste. And the amazing thing is that Laura understood what I was saying. I was standing by the bed near my pile of books. I shook my head. I said, "Mmmfff mmfff mmffff mmmmmfffff mmmmmffff," with no lip action at all. I raised my arms and looked exasperated. She said, "So much to learn, so little time?"

That was exactly what I had said. I felt so happy and loved. And mmmfff mmmmfff!*

*so lucky

different levels of alone

I posted about Bear's death while I still had the final chapter of the flotation story to tell, and you know how I am about completion. So I ended up rushing to finish the flotation story while we were all just taking in the loss of Bear. You were, too, right?

Now I've been holding my Bear story and feel unfinished about that. Maybe it's just unfolding as the days go by. Whatever: I am missing Bear. I am a little bit haunted by the whole process of putting him down, which was just such an unpleasant thing and does leave one with a feeling of playing god when you have no desire for that role or responsibility.

I do not want to want to get another dog. I am hoping this is just grief and that it will pass, and that soon I will be driving to Las Vegas because I can, goll dang it.

Okay, so I don't have any interest in Las Vegas. But I have interest in the fantasy of a road trip without a screaming dog, which was Bear in a car. Laura thinks his problem began when she and Bear went through a drive-in carwash when he was a puppy; ever since then, he thought he was about to bite the big one whenever he was in a car, and he would scream as if he were in a cold bath without a vehicle surrounding him. Any number of witnesses, still wide-eyed and working their fingers around in their ears to stop the shrill echo of Bear's wails, will vouch for this classical conditioning experiment gone bad. People would volunteer once to take Bear in a car; never twice. Trips to New Hampshire required two tranquilizers and two Benadryl -- enough to make an actual bear sleepy -- but even this failed to touch his anxiety until right about the time we pulled in at Laura's mom's house, whereupon he and we would stagger from the car -- he exhausted from the screaming and we near tears from the stress of the trip.

I have interest, too, in taking a walk without carrying a pouch of poop for three miles, to tell the truth. And in sleeping past dawn if I feel like it. And going to see Laura when she can't come home from New York.

But the house without Bear is showing me that there are different levels of alone, and that I hadn't really been alone until he was gone.

It's not all bad, the aloneness. But missing someone? Missing someone, even a dog that screamed in the car, feels all bad.

I think I'll pass on the dental dam

I'm sorry -- a dental dam? Just what do you all think happens in a flotation tank?

Ever dutiful, I watched the video that loyal follower and friend Marilyn posted following my fiery fiasco in the flotation tank ("fiasco" may be too strong a word; "fiery" is not). Marilyn was suggesting that I attach a dental dam (which, should you wish to be turned off to vaginas, you may see in its proper positioning on the video she cites in her comment) to protect myself in the flotation tank -- a structure designed to effect sensory deprivation, toward the end of total relaxation. The tank, that is; not the dam.

I have to admit I learned something with that video. I learned I am very glad to be out of college.

Apparently I have not, despite my dogged efforts, allowed blog followers to truly know me. I would no sooner put on a rubber dam and a sanitary belt to have a blissful experience with sensory deprivation than I would wear scuba gear to bed.

Despite the initial snafu involving concentrated epsom salts and a vulnerable area of my body that lacks a dam of any sort, I was always game for a second float. I just needed to figure out how not to have a reprise of the inferno that so distracted me that first time.

I brought tape with me, dear followers, including well-intentioned RNs. Wise enough to understand that duct tape might prove to have alarming ramifications during removal, I left that at home. Instead I brought the kind that you secure gauze bandages with. It's half paper, half something with more fortitude under water, I was hoping. But -- and here is the surprise ending -- I didn't need it. For there, sitting on the little bamboo table with the alcohol for your ears (see earlier duh) and a little hand towel, was a small packet of Vaseline which one is invited, during your pre-float orientation session, to use to cover papercuts before you get into the tub.

Though it may be anti-climactic for you as readers possessing a decent amount of collective schadenfreude, with the help of strategically placed Vaseline I ended up having a very peaceful, pain-free float. If you like the feeling of weightlessness and absolute darkness, I can now unequivocally encourage you to try to find a flotation tank. I would happily do it on a regular basis if one were closer by. If you go to the one in Westport, Connecticut, tell David I sent you. See if both of you can keep a straight face.

Be forewarned that a flotation tank is, perhaps like everything else in our lives, a projective device for our personalities. Laura floated in her own tank down the hall from me. I assumed she was doing what I was doing, which was lying as still as possible, trying to stop all thought and sensation. "Just relax, La," I coached her. "That's all you need to do. Lie back. You can't sink, and the water won't go over your eyes or nose. Just relax."

First order of business after our floats was to celebrate, while sipping our tea, that my float was comfortable and relaxing. No pain. Very peaceful.

How was yours? I then ask her.

"I loved it!" she exclaims. "Did you try crossing your legs? Did you notice that you could push ever so slightly against the side with one pinky and float right along the surface until you hit the other side? I did that over and over again, back and forth, back and forth. You could almost spin around! I got tired of not being able to see, so I kept turning the blue light on and off. There was a good echo in there, did you notice? I made some great mouth noises in there. And this brochure says you can use the float time to solve problems in your head. Why didn't they tell me that before? I would have tried to solve a problem or something."

I check her tea bag. Oy vey. Just what she needs. We trade mugs. She chugs my balancing chamomile tea and I sip on her fortifying oolong.

Bear Bear

We interrupt this blog to say goodbye to dear Bear, whom we put down last night. He was 16 last August, and he kept us wacky, enthusiastic, cuddly comfort. Yani married him when she was six years old. Last night Laura and I wept like -- well, like we were losing our Bear.