a canvas tent in the rain

Ever sleep in a canvas tent in the rain? It holds up and stays perfectly dry -- until you touch it from the inside. If you put your fingertip against the canvas, the rain wicks its way toward your finger and then drips incessantly until the rain stops. As a kid, I thought this was pretty cool, and couldn't resist testing it on several occasions. Huh, it works over here above Ellen's sleeping bag, too! Cool.

In one of those quirky karmic twists, I am a canvas tent in the rain these days. I seem fine, feel fine, keeping out the rain almost perfectly. But on two recent occasions, someone put their finger to the fabric of my being and, to my alarm and fascination, I began to cry. Both of these episodes happened out in Colorado, where I teach each August at a week-long counseling institute. The first time it happened, I was in the middle of a sentence at the lunch table, and a participant said, "paula, you are so beautiful." I stopped mid-consonant and felt my face scrunch, my lips quiver, and my eye gutters pool. I still don't know what I was feeling. Fragility comes to mind, so that even the kindest touch inadvertently bruised.

The next time was a night or two later, our night out on the town. Woohoo! I was with the four other institute faculty, whom I have come to love very much. I had ordered trout. I have begun to order trout, tuna, and, sometimes, with a stoic sigh, salmon. The omega-3s, of course. Janet asked me how my dinner was. "It's good," I say, with mouth full. Then a pause before, "I am trying to learn to like fish more." Janet, who seems to have mastered the "let's do it because it sounds like fun" type of Zen existence, said, "Why the heck would you do that? Why don't you just get what you like?" Scrunch, quiver, pool. "I'm just trying to take care of myself," I said feebly.

So there it is. I seem to have my own micro-post-traumatic-stress-weirdness going on.
I pulled myself together as quickly as I could on both occasions, which I don't really approve of or like doing. But both times I feared that I would sob (WAAAH is what came to mind), and I didn't want to be the center of worried attention. I am deeply glad to be held in the light by people who care about me, but I don't want that light on me at the dinner table as I show evidence of my PTSW.

I come from a long line of criers, and like it that way. My mom called tears-when-feeling-moved "recognition tears;" those that come when one recognizes the beauty or intensity of a true moment. Crying at graduations, crying at the Big Dipper, crying at music, crying at being told one is beautiful. The intensity fills you up and it bloats you unless you let it out. Both my folks cried easily when moved in this way, and now my children do as well. "Curse you, mom!" they've each called out between wet sniffs at some point in their emotive lives.

I'll be blogging more in the next few weeks. I am trying to figure out a lot. Why so fragile? How do I balance the directive (from a variety of trusted sources) to follow my bliss with the equally convincing directive to eat trout? And do I rest today or do I run? Can I surrender under controlled conditions? These are big questions for me now, and I am having a hard time trusting the answers that come to me.

On a brighter note, the trip to Colorado gave me the chance to wear compression garments, chic sleeves that I have to wear when I fly for the rest of my life (let it be long, this thing called life, and I will agree to wear one over my entire body) to prevent lymphedema. The prescription came from the surgeon, so I figured (as with the delusions I had about the prosthetic bra that turned out to cost $660), that such sleeves would be Reasonably Priced. I went to get a fitting at a medical supply store, one of those places where you look at all the merchandise with your head cocked and think, "what's that for?" while giving thanks that these items are, simply by Grace, unfamiliar to you.

Boy, was I excited when the order arrived. I mean, look at the woman on this box! She is really, really happy to be wearing compression sleeves. Anyway, you too may pick up such sleeves for a mere $170, and be as tickled as she and I are.

Just don't touch the tent.

wax on, wax off

I did it. I got the sideburns waxed yesterday. I am submitting for your consideration the evidence of said sideburns -- those same that were denied by family and friends.

I want you to know that my reports are honest. I feel completely vindicated by the photo to the left. Also, by now it should be plain to all that I score fairly low on the vanity scale, and that I do not apply wax to body except in case of emergency. These were monster sideburns, and they weren't going to stop.

But they put up a fight, I'll give them that much. Yowza! That smarts.

taking refuge

I am writing from Silver Lake, New Hampshire, a place that is so lovely it almost hurts. In this aquatic setting I am liking my new streamline look and feel. I ought to be able to cut through water like Flipper now. I don't, but I feel like I do. It's like when I got a pair of PF Flyers as a kid, and really felt as though I could jump higher, by golly.

I can't find a good reason to put on a bathing suit top, given that there are no nipples, no boobs, no nothing to cover up. So I don't.

When the water is cold, I do find myself thinking, "Brrr! If I had nipples, they'd be erect fo' sho'!" The good thing, though, is that it's okay. As long as I stay healthy, right now I am okay without breasts. I do not miss bras, and I absolutely do not miss bathing suit tops.

To those passing in canoes and kayaks, I am hoping I look like a boy, a gray-haired boy with a buzz cut, reading psychotherapy texts on the dock. To add to the ambiguity, as soon as I move, I am more like an old Chinese man -- Pop, in fact. The similarities between my dad and me -- the stiff but animated gait, the gestures, the facial expressions -- are both sweet and creepy, and all are highlighted by the thin hair and neuropathy. Laura and I alternate between being charmed and spooked by it. I would like to channel Pop's charm, his vivacity -- his late-life rickety self, not so much.

A friend and blog follower recently pointed me toward a website that focuses on all the blogging done by breast cancer copers. Breast cancer blogs, it seems, are a dime a dozen. No -- less! They're free, and they're everywhere. My little musings feel quite ordinary, honestly, which is probably a good and important thing. I had truly begun to think about birthing a book, but now I doubt that a viable book could come out of this. I'm going to play with it seriously, but not solemnly, and with few illusions.

I'm even of two minds about the cancer experience as an extraordinary thing. People have told me, "Now you just need to live your life. We're all going to die, and who knows? I might get hit by a car tomorrow."

Okay, that's true, I think. I then decide just to chew on and gracefully digest my personal serving of existential comeuppance. I can sustain that perspective for awhile, and then it dawns on me that for people who've gotten cancer, the feeling is actually more like "Heads up. Cars are a little bit drawn to you." Then it is harder to digest.

I do like those moments when I have a more Zen approach to the whole thing, when I think, "I'm here now, and that is all that matters." Shit happens, but it plops into an immense container of Good. That's kind of Zen, right?

I am an odd zen/neurotic hybrid, as most of us are. This morning while meditating on the dock (the underwear on my head, dunked in the lake, kept me cool), I thought of a title for a book I'd like to write, if I ever do find the wit and the wherewithal. Titles come and go in my little mind, but this one speaks to me: "I Take Refuge in Buddha, but Buddha has a Heck of a Time Finding a Way to Take Refuge in Me."

Where is the rest?

A 60-year-old client came in a couple of days ago, scratching at an idea shared with her by a friend. "So maybe we're all just tiny fragments of a larger Something," she said, floating the idea aloud. "We live out our little life, but that life is a mere drop in an endless Ocean." I thought I heard capital letters.

She had my full attention. I love conversations like this. What's it all about? What might this Ocean be? What would it mean for her to be "a mere drop"? I was ready to go wherever she needed to go in this conversation. I nestled into my chair.

 "So if I am just a drop bobbing along as part of a larger whole," she said, with some heaviness, "where's the rest?"

I ran with the ball, unaware that I had picked up the wrong one. For a minute or two, I waxed existential, wondering aloud about where we find the Rest of the Whole. Are there times when you feel connected to the Rest? I asked. Might there be some comfort in being a tiny fragment of a larger something? Can fragments be whole, too?

In my mind I am coming up with the best deep questions for this person: How do we figure out what we are meant to do with our piece of an infinite puzzle? When do you experience comfort in knowing that the rest exists, even though you can't see it?

She looked at me quizzically when I finally stopped talking and set the ball down, panting and bright-eyed, as I can get when sessions get existential. "No," she corrected me with a little pinch of her lips, the mouth's version of rolling its eyes. "I mean, where is the rest? When can I just rest?"

Oh. Rest. That's what I was hoping to offer you. Jeez, paula, I tell myself: Shut your larger something of a hole, and listen.

all follicles reporting for duty

Too bad. I wish I had a "before" shot of this cheek, when there were absolutely no hairs growing at all. I was completely streamline there for awhile -- if I hadn't felt like crap, it would have been a great time to be an elite swimmer.

Being totally hairless was strange, but actually felt weirdest on the face. The face looks smooth on most women, but is of course wrapped in its (generally) discreet fleece at all times. I hadn't realized how hairy we womenfolk actually are. At the present time, I am practically growing sideburns. Move your head around in front of your screen so you can get the full effect. The new hairs are plentiful and dark. I am reminding myself of the movie "The Incredibly Shrinking Woman," in which, just before disappearing altogether, Lily Tomlin succeeds in reversing the shrinking process -- only to grow and grow until we see that instead of just coming back to her normal self, she is now uncontrollably increasing in size.

At this rate I will end up as hairy as a possum -- with the same combo of gray and black from head to toe, it seems. A possum comes to mind only because we just caught one about an hour ago and took it for a scenic drive to an undisclosed location. I hope it doesn't find its way back (it was hell trying to get that little blindfold to stay on), because it was eating our life savings in the cat's food. Also, whenever the dog spotted the possum on the porch, he would completely flip out and begin barking in tongues.

Anyway, the possum was hairy, like my face.

The family wants me to say that this is not noticeable to them. This is a kind family. It's just that someone needs to disclose that these things happen after chemo. Someone needs to tell you that every single hair follicle on your body closed up shop and patted its plot of land with a trowel during chemotherapy, to the extent that when hairs began to sprout again, they were all in-grown, having to break through holes in the skin that had been sealed for so long. I am routinely scrubbing my arms and legs with loofah gloves to try to open up the hair holes and unfurl the hairs that are stuck just beneath the skin. I am part hairy, part bumpy -- moving toward, it seems, being just plain hairy.

I want you to know, too, that the sensation of having nose hairs still feels very new. That's strange, isn't it? I had nose hairs for 54 years, then 4 months without, and I am still aware of the "new" feel. Why would that be? Since each exhale brings a noticeable sensation of air-wafting-through-something, it keeps feeling like maybe I have a fleck of nosina (no-zee-na, a family term) in there and that maybe it is showing. It's not (har), but I keep checking anyway.

Want to see something gross? That's how I've opened with the kids. Then I stick the spear part of a nail clipper all the way down under the big toenails. They're hanging on by the sides (the nails, not the kids), but there's nothing under the nail itself. The spear-under-nail effect is eye-popping and gratifying. Like a kid who can bend some joint in a weird way and gross out her friends.

I have several drafts of posts that I can't seem to bring to fullness. They're stuck beneath the surface, like all those hairs, and just can't seem to break through. These posts are about things that matter -- things like the recent auction of my dad's art collection, friendship, paradise, my work, wholeness, grief, all that. I don't know why the posts about follicles, nose hairs, and neuropathy come so easily, why the need to document these small things.

The neuropathy? Don't get me started. But isn't it strange that it builds for so long after chemo is over? It's like those scenes in roadrunner cartoons, where Wile E. Coyote is burnt to a crisp but stands there for a long moment, blinking and confused, before crumbling away.

What have I done?

When I read Anne Melissa's comment on a recent post, I experimented aloud with several possible tones in her apt use of "WTF."  I had used WTF in the post, but I think our tones in this were subtly different, and I strained to zoom in on the distinction. Anne Melissa, feel free to leave a phone message consisting only of how you hear the two "WTF"s. I will reciprocate with a message to your machine with my own rendition.

These tonal variations remind me of a pastime that my beloved sister, Ellen, and I played as kids.
We would take a simple sentence that one of us had said or heard, and then try every possible emphasis-related iteration of that sentence. " I had to sit on the couch." "I had to sit on the couch." "I had to sit on the couch." "I had to sit on the couch." "I had to sit on the couch."

I confess that we could do that for many minutes. It's how I learned to play with changing meaning through word emphasis, and how I learned what simply thudded, such as emphasizing articles: "I had to sit on the couch." Unless you really stretch for kind of a sinister meaning, Thud. No wonder Chinese took a pass on articles.

Anyway. What have I done? Inevitably, as I caretake myself back toward health, I now have the energy to second-guess my drastic, irreversible decisions. All that has lingered from surgery and chemo are signs of damage. I have begun to wonder if I have damaged my body more than the tumor warranted.

Did I just take an uzi to get at a mouse in the wall? All this collateral damage, for a 2.2 cm tumor? Could I have willed it away somehow instead? Could I have gotten at it with Reiki?

Between the long, vertical Caesarean section scar ("Yani's door," the family has always called it), the mastectomy scars, and the still kvetching port scar, I look pretty cut up. If Laura were to leave me, who would love this body? It's not that I am counting on attracting anyone with my body anymore (insert small snort here), but people are generally more drawn to those who have all their bits, aren't they?

It's really disconcerting that the neuropathy is worsening as time goes by, marching onward, swinging scythe to nerves almost 3 months post-chemo. At its most gentle, it is a matter of nerve damage that is creeping up my arms like invisible, arm-length gloves, mildly numbing me up to the pits. And it now has reached mid-thigh on its way upwards from the feet. It has reached the left side of my torso, but not yet the right. I scratch slowly along the margins of the numbness, trying to detect where normal sensation remains.

The numbness is creepy, but the stiffness is truly annoying. My hands are too stiff to hold a pen and write comfortably. And when I get up in the middle of the night, I can barely walk for the stiffness in my feet. I do not embellish here: I walk like I am channeling Marcel Marceau, who is parodying a tottering old woman. It's got that layer of the absurd in there somehow.

After stretching out during the walk to the bathroom, I've loosened up a bit. The walk back to bed is easier, and I almost feel like I should do some 2:00 a.m.-type errands before my feet lock up again.

The first trip down the stairs in the morning is ridiculous. I double step on each stair. On the stairs it is no longer the mime and the tottering old woman. Having to plant both feet on each stair, I feel like I ought to be carrying a blankie and sucking my thumb, heading down for bwekfuss. I am in the course of each day acting out the whole life cycle.

It crosses my mind, though, that if chemo is still killing nerves, it must still be able to kill cancer cells. I try to comfort myself with this thought. But it troubles me that sometimes neuropathy remains forever, and that there is little to be done other than to wait and see if it does. Oh, I'm doing my best to invite healing - from acupuncture to B vitamins to getting good exercise, but it may be that those things can't cajole the nerves into regenerating, ever.

Alas, I haven't felt any positive effects from the acupuncture, except for the sweet catnap that I get when Stan leaves the room while he lets the needles do they thang. I had wanted to be sold on Chinese medicine, once and for all. I'm not there yet, and I am disappointed to have to acknowledge that.

I'm going through a little self-conscious something with my concave chest, too. I haven't felt a need to say anything about it up to this point, since the baldness was a clear signal that something was up. But as my hair grows back, and people aren't so sure, I feel more awkward. Is she ill, or does she just have extremely short, thinning hair? And I know some people will continually wonder, surreptitiously glancing to see -- wait a second, does she have boobs?

I anticipate wanting to work in an explanation as I encounter people, but it will never be appropriate. "Hi, I'm paula. I had to remove my breasts.""I had to remove my breasts." "I had to remove my breasts." "I had to remove my breasts." "I had to remove my breasts."

As I listen to the tones of all of those, the one that stings my eyes now is this one: "I had to remove my breasts."

watercolor

Yesterday T'ai explained to me why my new hair is so soft. It seems obvious now: its first growth comes out pointed. Hair grows like fresh asparagus spears. When we cut our hair, we create blunt ends that feel rougher. For now, though, I can actually see the freshly grown, tapered points. So soft.

My hair feels like a Chinese watercolor brush. I've probably damaged a few of those in my time, fondling the soft brushes that Pop had rinsed and set down to dry. I'd flick them along my cheek. So soft.

It's funny, this point along my cancer ride. I am noticing that I feel like I would deserve more attention if I were to have a recurrence of the cancer; that is, that I deserve less as I return to health. A recurrence would make for more interesting reading, wouldn't it? A couple of publishers are glancing at the blog, I hear tell. Who wants to read about nothing happening, just hair growing back, pointed and soft? Who wants to read a story with no clear ending?

I've actually noticed that I find great comfort in being among crowds of people now. Wandering among the masses, strolling along a street, I can see that most people don't have cancer. I like taking that in: Huh. Most people are pretty healthy. It feels good to be reminded in this way that my situation is unusual. For reasons I can't articulate, when you have cancer, you forget that, and start to wonder if illness is the norm, that it's gonna gitcha.

I still am on intimate terms with fatigue, though that is so much better than it was. The neuropathy in my hands and feet remains a drag, especially as it turns out that it peaks around 3-5 months after chemo ends. Well, bust my buttons -- no one told me that. I see the good people of the clinic waving goodbye to me, waving to each chemo patient as she finishes treatment. When the door closes, they tiptoe over to the window to watch me drive away. They sigh with relief when I am out of sight, having escaped having to tell me that the neuropathy would get worse for quite awhile. Nothing to be done, but it would have been nice to know, nice not to have to google "neuropathy: WTF."