Saturday, February 27, 2010

Aw, Mom

Tomorrow marks the one year anniversary of my mom's death. She had driven to the Providence airport to pick up a friend who was going to search among my dad's paintings for illustrations for his book. She got out of her car and sat down by the parking lot fence, having suffered a severe stroke as she took those few steps. She was unable to speak.

An ambulance was with her within 4 minutes of her parking ticket having gotten stamped. The hospital folks tracked down mom's doctor, who tracked down Ellen, who spread the word among our sibs through brief, heart-gripping phone calls. We all arrived at the hospital within a few hours of the stroke, and had both tender and funny conversation with her at her bedside. She was communicating with nods and gurgles, and it was unclear whether she understood that her words were incomprehensible to us. We laughed at the new box of crayons in her purse, and she laughed sheepishly with us. At that point, we were all sure she would survive. Her own mother had lived to 105, and we had the hubris to expect that mom would be around for another 20 years or so.

Laura and I stayed in a nearby hotel that night, and I got a call from the hospital in the morning, letting us know that they had "had trouble rousing her." I guess that is hospital speak for "can't wake her up." Also for "she is dying; come quickly." We were there in ten minutes, and my siblings were on their way from from their homes, each about an hour and a half away. She died too quickly for them to see her again. Her lungs pumped noisily and automatically, while Laura and I held her hands, and I moaned, "Aw, Ma" in disbelief. I wanted to be the one saying, "We love you. You are amazing. Thank you, thank you, thank you for being who you are. We are all fine. Of COURSE you can go. Say hi to Pop. Who the heck wants to recover from another stroke at 86? Go freely." But all I could muster was, "Aw, Mom."

My mother was the kindest, least judgmental person I have ever come across. I have memories of two conceivably critical things she said in my lifetime. One was in reference to someone whose behavior had been gratuitously rude. I was about to say, "Wow, what a jerk!" or something like that, when mom said with amazement, "That person is used to getting her own way!" Another time, when someone had been pointedly mean-spirited, she said, "Kindness is not a priority for her."

I do believe my job is to evolve beyond my parents in some way, just as my kids are meant to evolve beyond me: that we are wired to learn and to grow, and that this happens on both individual levels and collective ones. We're supposed to learn from the kotex on the scalp (I really hope you recall this reference...) and do it better the next time. We're supposed to become kinder and kinder, more and more courageous in heart and mind.

Sometimes I am not sure I am doing my part for evolution. My mom set the bar very, very high. I may be more organized than she was, but who wants that as their evolutionary legacy? Here lies paula; she could really work her way through a list. I can't match her in moral courage, generosity of spirit, or true serenity prayer-type wisdom.

Of late, as I'm blobbing around feeling chemo-sick, my main activity these days, I have discovered an interesting "ability" that I wonder if everyone else has, too. I'm not sure I can describe it accurately. We all sit within our own faces, looking out from behind them. Lately, I find I can sit behind the faces of my mother, my father, both my brothers, and my sister. I take turns trying on each of their faces and looking out from behind them. It is quite something. I can't do it with anyone else's face -- not even my children's. I think it must be something that works toward one's parents and siblings, but not descendants. It has been for me a wonderful, comforting exercise in the mystery of deep connection, and maybe even evolution.

Aw, Mom, I miss you. But it is wonderful to look out from within your face now and then.

Tuesday, February 23, 2010

vanity

I don't think I am particularly vain. Honestly -- less vain than average, wouldn't you say? As one simple but telling example: a clandestine bonus of having a solo private practice is that I get to bypass the annoyance of deciding on a new outfit every day, because I only see people once a week. For the most part, I can get away with wearing the same thing for several days in a row. Sure, sure, I'll change the necessities, the undershirt (if I must), etc., but I'll replace it with an identical one the following day. Mostly I am freed from the norm wherein we all agree not to repeat outfits in a certain span of time.

For a dozen years or more, Laura and I were exactly the same size. That was handy. She'd come home from work and rather than throw her outfit into the hamper, would ask if I wanted to wear it to school the next day. Yes! Yes, of course. Problem du outfit du jour solved. We had to make a few accommodations here and there -- my folksy had to meet her preppy halfway -- but it worked. Now hormones and genetics are having their way with us and we are veering apart in the clothing department, though we still have two identical pairs of clogs and boots, and our sneakers are interchangeable. As she approaches a buxom menopause and I leave bras behind forever, we remember the wardrobe-sharing days fondly.

Anyway, I don't think too much about my appearance, or how others might be judging it. Still, along my own continuum of vanity, the chemo-related changes in my appearance are freaking me out a little bit. I wish I were above it all. I had a bad moment yesterday when I looked in the mirror and didn't recognize myself. My forehead is endless, of course, there being no familiar boundary markers to get my bearings on what I was seeing -- my face just went on and on into my scalp. Theoretically, my face goes all the way to the back of my head now. Steroids had made me puffy, and I'm pasty and wan. Though Laura has been her usual turning-toward self, I am unhappy about those moments when she looks over: I'm asleep, my eyes are crusty (terrible dryness issues with chemo, and the eyes try to compensate), my mouth is probably ajar, my forehead is like a sandbar at low tide, and oh, look, my tongue is white, too. Does she think to herself, "There's my breast-less, pasty, bald wife with her eyes stuck shut! Gosh, she's cute"? I think not.

It's just not something you want someone who is supposed to be attracted to you to see. 

I also had a bizarre moment stepping out of the shower recently when a little round band-aid, placed over my port by the nurse, fell off as I toweled down. I thought maybe an earlobe had fallen off -- just for a second, but still! When body parts are getting lopped off, or turning strange colors, and one doesn't recognize one's own face, it is not beyond the imagination to have an earlobe slough off. Here is a photo of the evidence that made my eyes pop for a second. It may not look that much like an earlobe this close up, but it sure did on the bathroom floor. Scared the heck out of me.

Saturday, February 20, 2010

footie pajamas

Can't resist showing you the footie pajamas Yani sent in the mail. The feet were sewn with Big Foot in mind, which makes me walk like I'm wearing flippers. It's better exercise than just dragging my feet around.

Ellen's right! I do look like a martian! Dang.

turning towards the smart ass

In couples therapy, I often present John Gottman's concept of "turning towards," a phenomenon he coined while researching thousands of couples over time. They found that "happy" couples engage in this behavior much, much more often than unhappy couples. Turning towards happens in microinteractions, the tiniest of behaviors between two people. Say you are reading the Times online and you say, "Huh." Turning towards, your partner might say, "Hmm?" Or you say, "Supposed to snow again today." And your partner says, "Yikes. Again?" or "What time is it supposed to start?""The milk has gone bad." "Bummer." That kind of thing.


Turning away looks like no response, no acknowledgment of the bid for connection. Turning against is like "So what are you telling me for?" or just "So?" or "I told you to get more milk!"


Laura is a master at turning towards, and as I go through all this folderol with my health, I am amazed at her staying power with these microinteractions, especially since so many of my "bids" are whiny.
"My eyes are so dry I can't open them sometimes." "Oh, lovie, that must be such a drag." "My neck hurts." "Want me to rub it?" "I miss my breasts." "I know, sweetie." "I feel sick." "I'm so sorry." "This takes so bad." "Yep. Eat it anyway." Okay, maybe that last one isn't the perfect turning towards moment, but it still feels like she's heard me and that what I've said matters. She hears me over and over and over again, and she never turns against, and only turns away when she's lost in something else, which is not really turning away. It's being not-quite-in-the-room, which is fair.


I've had a long history of being the one in a Relationship that has something like the upper hand, the one who is needed a bit more. I don't know how or why I've constructed things in this way, but I am aware of it and not particularly proud of it. It's meant a few broken hearts, and tremendous guilt on my part -- but I have with this unconscious strategy managed to avoid having my heart truly broken by someone else. It is frightening to me, yet wonderful also, to feel the "balance of power" shifting in my marriage. I am leaning on Laura in ways that I have not done before, and not just in terms of caregiving during treating the cancer. I am giving up some of my self-righteousness. I am standing in a place where my heart could be broken.

Up in our bathroom we have a framed Gary Larson cartoon with two characters sitting in their living room. One is a rabbit, watching TV in a cushy chair, holding a remote, and drinking a beer. The other is a donkey on the couch under a lamp, reading "Animal Farm." The thought bubble over the donkey's head is "Dumb Bunny," and the bubble over the rabbit's head is "Smart Ass." Too often I am the smart ass, the one who can talk my way to being (or seeming to be) right, who can hover above a conversation, an encounter, and stay in my head if I feel the need. Again, I am not proud of being the smart ass, but I am attached to it. In a marriage, it is not particular useful. I am working hard on outgrowing the non-relational parts of the smart ass.


I was a dumb bunny yesterday, which was kind of fun. I drove to the doctor, having been hauled in for more hydration. And I forgot to wear my glasses. For someone who has been wearing glasses since second grade (I inherited my beloved brother Kevie's boy's horned-rimmed glasses, to my deep chagrin -- wanting instead the blue cat-eyed ones like Betsy Bruno had), this was a highly unusual move. It was fine -- I just focused extra deliberately as I drove. But I felt like it was a weird oversight. Undersight. I recognized my nurse by her tiny voice and by feeling her face. I haven't told Laura yet. She didn't even like the idea of my driving myself there. I'm not sure if this "success" will score me points or take them away.


It actually reminds me (she said, always seeking homeostasis) of the time Laura set off for her first day of work as Dean of Students at the Ethel Walker School, having forgotten to put on her skirt. Yep, walked straight across busy Route 167 in her slip. That, and the moment she went to the opening faculty cocktail party at St. Paul's School, her first social occasion at that very prestigious institution. She was standing on a white carpet, and when the Rector waved at her, she waved back, letting go of the glass of red wine she was holding in the waving hand.


That's my wife. She wants me to call her a dumb bunny right here, but I ain't gonna do it.


Because she's an incredible rock for me, a cannot-be-surpassed administrator and educator, a visionary, a fabulous co-parent -- and a teacher to me, as I said in the post above, of how to turn towards, always turn towards.


Chemo update in closing: Thursday was the last adriamycin/cytoxan treatment. I'm standing in a two-day window of okayness, enjoying a gentle breeze, but anticipating that it will close soon, firmly. Worst symptoms right now are absurdly dry eyes, which makes me continually have to tell people that I am not winking at them, I just can't open my right eye for the time being. Also, there's the constant headache and malaise, and drinking and eating are still annoyingly difficult. But it still feels like there's a window open, and a breeze.


I'll say more at some point about the next regimen, taxol, which looks to be a different experience altogether. There's lots more pain, neuropathy, the loss of eyebrows and eyelashes (that is a really good look -- a loooong wink with no lashes). I looked online for false eyebrows, at my beloved sister Ellen's suggestion, since I don't trust my artwork, and I don't want the hassle of making bad brows every morning. These things stay on for "2-4 months," which is both impressive and iffy. I don't know, El. It looks like you're buying a pair of small animals, like two caterpillars or something like that. I'm not saying no, because I want to turn towards the idea -- but I am saying weird.

Tuesday, February 16, 2010

just can't stay down for long

Last night the taste grunge finally receded and for the next couple of days things are less likely to taste like sewage. Unfortunately, as it goes about destroying soft tissue, chemo has a no-taste-bud-left-behind policy: I can hardly taste a thing now. Still, I am trying to eat before the sewage gets "refreshed" on Thursday. I am going to eat a whole loaf of my sister-in-law Patty's cranberry bread before then. Though it tastes like cardboard with sort of tart spots, I have happy associations with her bread and those will have to do for now.

On the up side, I can drink Laura's strong black coffee and not wince. Her coffee is generally of the hair-on-your-chest caliber.

Over the past couple of days, I have surrendered to shrinking my practice down to a very small number of clients. So far I have told about ten clients that I am taking a 6-month leave of absence from the practice. That's huge for me. And whenever I second or third guess this, I drag myself back to the principle that in psychotherapy, it's not good enough to just show up. Both the surgery and the chemo have absolutely dimmed my available light. It is clear to me that unless I am fully present, even if I could fool my clients, I would know they deserve better -- they deserve more of me.

Though I have offered to refer people to another counselor, so far they want to wait until August. With the folks I saw today, I heard myself making sure they know that if something comes up, they can contact me to talk by phone. I give myself a B on firmness with the leave of absence thing, but I don't think I want an A.

I wasn't sure how it would feel as I bid farewell to the bulk of my practice, my clients, my income, but I am relieved to find that I am relieved. Okay, except for the income part. We've been having to dip into our savings since my work has slowed down post-surgery. I've made a few transfers from ING into the bank, and I do it with a little frown. I'm trying to remember that this kind of snafu is what that nest egg is for. I just had other ideas for it. I don't know what they were, but they were going to be really fun.

I did have four clients today, folks I hadn't seen in three weeks. Two of them took a look at the hat and said, "So, you're bald now?" and quicker than you can say "Bob's your uncle," I felt my hand popping off my hat to say yes, bald. I had no idea I would do that. I am going to try to curb the hat-lifting reflex now that I know how I react to that question.

I felt less chemo sick today, enough so that I did some shoveling, something I couldn't have imagined doing three days ago. I faded by midafternoon, but for a few hours I was happy for the reminder that a good mood and having energy is my norm. It's surprisingly easy to forget.

I don't need to confess this, but here it is: I wore the tiniest bit of makeup today. I put on some eyeliner, I think (the skin flops over the line, so it's hard to tell), and a bit of blush. I found the blush alarming and rubbed it in so much that it pretty much disappeared. A bit of lip color. I don't know. I'm trying. It's still so weird. Why don't my beloved brothers have to put on makeup? They're kind of wrinkly and pale, too.

Sunday, February 14, 2010

steering my little canoe

It's day 11, and I had expected smoother waters by now.

I keep trying to identify what kind of sick this is -- it's unfamiliar, and the mind wants to fit it into a schema. Is it like the flu? Like a hangover? Is this what the very old feel? None of these schema work, though there are elements of each, I think. I'm guessing about very old age.

I get winded going up a flight of stairs, but it's not my lungs or my muscles. I feel like I'm coming down with something that's going to be really fierce, but the fever never appears. My head feels heavy and achy, but it's not a headache I recognize.

Bone pain; that's new. My tongue is rotting and turning white. My thumbs and big toes hurt, just on the skin at the knuckles. Those symptoms don't fit anywhere.

In my little mind I am developing a new schema to understand chemo sick. How often do you get to develop a new schema? None too often. Everything gets compared to something else, squished into an existing schema -- even if it doesn't quite fit, as in "it tastes like perfume," "it tastes like oily cardboard."

I don't know what to compare this to. It's an interesting place to sit.

Last night Laura and I sat by a crackling fire and talked. I came to realize that my sadness is right under the surface much of the time. I fight it back, as it scares me to plumb its depths. I am not sure what's in there -- all the recent losses, from parents to breasts? Or the losses of all time, losses sustained by the human family? Is it the loss of youth, a body that for so long took such good care of me? Is it just plain death, the ultimate loss? Or just that I've lost my rhythm. I'm not sure.

I'm not depressed, which is great and good. But I guess I am sad, underneath. I feel torn about airing it out -- in my mind, here, or anywhere.

As I write, I realize that I am not unhappy, though I am sad. I don't know how to explain what that means, but it is true.

Whatever this chemo-sick is, it is such that I am feeling like I may need to take a leave from my practice for awhile. I really had hoped not to have to do this. I don't want to be a hermit for the next 3 months, but I also don't want to under-serve my clients. They need me to be fully present -- that's the main thing that happens in therapy, in my view: you bear compassionate witness, for real, to whatever matters most to the client. If that really, really happens, growth just takes place. It's like providing good soil, sunlight, and water. Growth will occur. But I am not sure I have enough light to spare right now.

The idea of sacrificing the practice while I focus on taking care of myself chafes. The shape, the pace, the size of my work was just right before cancer came flooding into the flow of my life. But am I supposed to be using this as an opportunity to make some kind of change in my life? Am I supposed to be undergoing a sea change? Really? I kind of liked where my canoe was going.

Laura is encouraging me to stop the practice, even to take the bulk of the summer off to get my strength completely back after chemo ends. There is a part of me that likes this idea, but I'm scared to do that, too. My work not only brings a decent income, it is part of my identity. What an effort to rebuild and reshape both things. And what about the clients I'm working with now?

On a different note, at supper last night Laura came up with a new plan for eating during chemo, and it's been helpful. She encourages me to picture a fuel tank, to listen to my body to determine the percentage of fullness or emptiness, then to refuel accordingly. I need to give up on fuel tasting good, and just act according to what the gauge indicates.

We're still working on embracing this new schema for understanding food, apparently. I just announced to her, "La, I think my fuel tank is empty." She said, "Okay. Let's take your car when we go to Whole Foods. We can get gas on the way."

Tuesday, February 9, 2010

make up class, 101A, remedial

I went to the makeup seminar at the UConn Health Center today. My friend Brenda went along with me, and that was a good thing. None of it really registered in my overstimulated little mind, but Brenda seemed to be following along. How many steps do you think there are to doing makeup? A lot more than you're guessing, my friend. Working from notes, I see 15 steps: cleanser, spf moisturizer, regular moisturizer, concealer, foundation, powder, blush, powder again, eyebrows (without actual ones as templates this is more complicated than you might think), eyeshadow (three shades? who knew?), eyeliner, mascara, lipliner, and finally, lipstick. Then another dab of powder here and there. 

She lost me at the two moisturizers.

The aesthetician actually began talking about nails, which are likely to chip and shred during chemotherapy. I'd like to preserve my humble but serviceable nails, if possible, and listened closely to this part until it became clear that most of the tips were about what not to do when you get a manicure, not something generally on my docket. So I don't have to worry about nails other than keeping them moisturized and hoping for the best. My nurse says that often they don't actually fall off; they just "turn brown and get flaky." Nice.

The facilitator, by the way, was one very well made-up aesthetician. I have no idea how old she is, that's how well made-up she was. When we moved from nails to the face, she announced, "First, apply concealer anywhere that you have imperfection." That seemed a mighty broad brush to me. I began to conceal my entire face, imperfection by imperfection. Not that I don't like my face! I like my face just fine. But let's be real -- it's been around the block. 

Turns out she's only talking about dark this and sunken that, and she gives an art class review about lighter things seeming closer to us than darker things, how to make things "pop" by making them lighter and darker. I know these basics of makeup seem familiar to lots of you, but I have not spent a lot of time making my facial features snap or pop. I've mostly dealt in crackle. 

She wasn't sure of what to do with my epicanthal fold, that nice little eyelid flap that is one of my biracial tells. For others in the class, there was a line of some third color that "goes in the crease" of your eyelid. My crease disappears into itself, like a roller shade, so we left my lids with merely two colors. Saves money, time, and space.

Brenda had to help with drawing in the eyebrows.  It's a bit like those guys you see out near the highway with their survey equipment; it involves taking your eyebrow pencil and setting it flat against your face at different angles, marking three points where your eyebrows are supposed to be. Then you "feather in" strokes of pigment that should look like hair. Then you pinch somewhere (I don't actually remember where) with your fingertips. But for someone for whom drawing a little M in the sky remains a small miracle when it looks something like a bird, this will be the toughest task of all. I feel pretty intimidated by the whole eyebrow thing.

Here is a shot of me going after an imperfection with some imperfection-colored foundation. The American Cancer Society had put all kinds of cosmetic goodies in our bags, though some offered more pop than I would ever be up for. The Burt's Bees lipstick that Brenda brought was more my speed than the luscious plum that made me look like I was having trouble expelling carbon monoxide. 
I was the baldest participant, so I got to be the headwrap dummy. Here is a toothy shot of me wearing a t-shirt that has been cut and turned into a turban. Nifty trick. Will demonstrate upon request. Fun fact to know and tell is that if you slip a kotex in between scarf layers right around the hairline, you'll get a more "realistic" look of a lump where hair should be. It apparently took several years for people to move from sticking the kotex directly onto the skin to moving it into the safety of scarf layers. Problems arose with the first generation of kotex wearers when the scarf would slip, revealing the pad, stuck to the bald head. Then someone took it to the next step of invention and put it between layers of scarf. Don't you just love evolution?
The rest of the participants had a fondness for this poofy wig on the left, but I didn't. I felt like I should be an anchorwoman on the morning news, asking people to stay tuned for an update from Brian on that storm that's coming in -- isn't that right, Brian? In fact, I didn't feel a need to leave with a wig at all, but they were giving them away, and there was just too much of a playful, dress up atmosphere going on. I got carried away. 

The short, straight one here, with some gray polyester hairs sprinkled in here and there, is the one I walked out of the hospital wearing. By the time I got to the post office, though, my head was too cold. I took off the wig, wrapped my head back up in the scarf, and did my errands. I am not that happy going in cognito, I find.

I'm sure some of what I learned today will come in handy when I feel particularly washed out. I'll spend that day trying to remember how to follow the 15 steps. I will note here that the very kind facilitator advised us: "You'll need three mirrors. One to get way up close, one to see your whole face, and one to stand wa-a-a-y back and see how it looks." As long as everyone stands wa-a-a-y back, I'm good to go.



Sunday, February 7, 2010

small cliff

Word on the adriamycin/cytoxan street is that there is a small cliff after the third treatment. I am trying my best to walk the descent slowly, or at the very least try to catch a branch as I fall, like they can successfully do in cartoons. Or that Zen story where the monk savors the strawberry as he hangs onto a branch, having caught it on the way down to the pit with the waiting tigers, as he watches the mouse gnawing on the branch that is momentarily saving him. Oh, gosh, it's not that bad, but I do notice that the air is heavier, that movement is more laborious, that keeping up my strength is a puzzle I can't quite solve.

There is a weird neck pain and tenderness, all around the perimeter. I don't know if it's associated with the throat discomfort that is also there, but swallowing means working your way past some invisible impediment. The throat thing is not pain, exactly, just a good-sized speed bump on the road to a successful swallow. So drinking water, which is supposed to be my primary job, is much easier urged than done. Plus the taste -- ach, the unpleasant taste, even of good water! Today, only carrots don't repel me, but they take an inordinate amount of work to get past the requisite machinery of the mouth and throat. Rule of the road with chemo tasteblecch is to get food in and down as quickly as possible, and carrots don't abide by that rule -- but for today, I'll chew on them anyway.

I have had two great baths in Laura's mom's luxuriously deep tub. Interesting past-time while in the tub has been pulling off leg hairs, which come off as easily as a piece of lint.

Saturday, February 6, 2010

a martian and a rooster wake up in New Hampshire

Laura looked at me as we woke this morning and exclaimed that there was a martian in her bed. As I rolled over and looked at her major bedhead, I asked her to take me to her rooster leader. I like to think the martian got the last word.

We are up in New Hampshire, getting some post-chemo spoiling from Laura's mom. No plans. Maybe some reading by the fire. Maybe my first bath since surgery. That sounds pretty good right now.

I feel okay, though the chemoplague has returned to my palate. Beth the nurse says this happens to about 90% of people on adriamycin/cytoxan. My neighbor is 2 or 3 weeks behind me in her chemotherapy and hasn't had a single symptom. She tells me this all the time. She goes out dancing on Wednesday night, eats out most nights, relishes food. It's all about attitude! she squeals with apparent delight. But it feels accusatory to me.

In fact, I hear this from lots of people -- strangers and friends -- that it's all about attitude. I don't actually think that's true. Attitude matters hugely, but so do toxins floating through your bloodstream. It feels like a tyranny to put cancer patients up against an expectation that the right attitude will make chemo a piece of cake. Cake! Gag me.

It seems impossible for people who run into me and notice what's under the hat, or have heard about the cancer somehow, to resist the temptation to tell me about other people who have had cancer and/or chemo. This is generally not helpful. It often goes something like this, "My friend went through that and she is fine now. Her mother and aunt both died of breast cancer, so she was really worried. But she is doing fine now. It's all about attitude." Or "My sister-in-law had a mastectomy and then chemo and then radiation. She worked part-time through the whole thing. It was really not too bad. It's all about attitude."

There's just something off-putting about the all-about-attitude message when I know there is more to it. And very few face-to-face encounters simply involve, "How are you doing?" - which is the most useful and supportive question of all. Does this sound self-centered? Maybe so. I'm just trying to get a bead on what is helpful and what is not. Telling me that it's all about attitude blames me, blames others in this situation, for when things are hard. It's not true, and it's not fair.

I have seen people stagger out of the infusion room, ghostly pale and battered. I hope they have a good attitude, but that cannot protect them from the storm that is raging through their body.

Having said all that, I will note here that I have a good attitude about an upcoming adventure next week. There is a program called "Look good...Feel Better," and it's available free to women going through treatment-related hair, eyebrow, and eyelash loss. It's a two-hour workshop in which they teach participants how to pencil in brows, tie scarves, wrap turbans, hide the eye bags and pallor. They send you home with makeup samples, scarves, even a wig. The rooster has to work, but I'm going to see if my beloved sister Ellen can join me -- double the fun.

I asked if they provide remedial instruction, and she said yes. This will be training that my tomboy self never got or wanted at age 12, 20, or even 50. I think I am ready to have fun with it now.

Tuesday, February 2, 2010

this tupperware that is my chest

Woot! I'm home. The retreat was a good thing to do. I'm tired but satisfied. I was with nice folks who were protective of me, and though I was hyper-aware of the sneeze in the back of the room, the nose blow to the right, I felt comfortable disinfecting my hands all the time. I still have not beaten the two-week cold, but can tell that my body is chipping away at it. Hopefully I will be better by Thursday morning, and my numbers will be up enough to proceed with chemo. It is a durn shame that as soon as you bounce back a bit, you have to go in for more. Today's meals were almost enjoyable, but I know that I only have a two-day window before it's back to rancid oil, whether I'm eating chocolate, a cracker, or an apple. Heath tells me to remember that eating simply is not about pleasure now. It's just about getting fuel. Tastes like petrol all right.

Here is a shot of me presenting this morning, taken by designated hugger, Roland. I like that for some reason, I've made people laugh. It wasn't the wig. That actually worked for me: it's comfortable, fun but not goofy, and doesn't look like I am trying to pretend it's my own hair. I am trying to decide if I can actually wear it in occasional sessions with clients. Probably depends on the client and their sense of what is professional, what is distracting, and what is just me feeling free to be. I had a skype session this evening, and wore the wig. That felt perfectly comfortable, but the client is a 22-year-old from Manhattan. I could hold sessions in drag and she might not notice. In fact, I sort of do dress in drag, I guess. Flat-chested, jacket, jeans. I suppose all that's missing is a necktie.

I've been unhappy about the missing breasts lately. With the burn and the drainage requiring so much attention, and then the anticipation of chemotherapy so closely on the heels of the surgery, I haven't had time to grieve that loss fully. I notice it at night the most. The skin is so tight, it pulls when I turn from one side to the other. This must have been part of Frankenstein's monster's misery; wherever he was sewn together, that had to pull. And I still have no sensation on about a 5-inch wide strip straight across my chest to under my arms. It feels like there is a layer of thick tupperware where my breasts used to be. The scars are both dead and alive -- no sensation, but pink and exclamatory. The left side is still recovering from all that drainage hooha; it's puckered here and swollen there, and tucked into that terrain is the slice of the scar. All that is something I can live with, and somehow it is different from the loss of my breasts; soft, healthy skin with feeling -- even expression! -- and with give. My chest has no give now -- it's tupperware, then rib.

Laura tells me as I cry typing here tonight that she thinks the scars are beautiful. She thinks they say No Cancer. She is a very sweet wife, and she says good things.

I'm realizing it has been a long day. I am glad to be home.