Wednesday, April 23, 2008

Waiting, waiting, waiting...

Wednesday ~

I was hoping to get my Oncoytpe DX test results back by now, but I have not yet heard back from Dr. Ryan's office. I called Tuesday morning to check in, and they said they would try to track down the results. Mass General is a big place. I am assuming everything is JUST FINE. But boy, it would be nice to hear once and for all, especially before I leave for the weekend, that the pathologists and the oncologist were right: that I do NOT have to have chemo, that Tamoxifen will do the job, that I can move forward into the next phase of reconstruction, and begin unearthing and sorting out the creative self that would like to live its life...

I don't like waiting. It's such a big part of life, that the key is to keep living while waiting so the waiting doesn't feel like anything at all. It's the same as worrying. Why worry? Where is it going to get you? I am hoping to have my next surgery done in early June, about three weeks after my final expansion on the second Wednesday in May, and am waiting to hear from Dr. Pitts' office as to when it might be. As much as I'm looking forward to having the time in between to do whatever the heck I want to, activity wise, I am looking forward to having the surgery done, completing my next four weeks of quiet puppy restricted activities, and then moving forward into a more permanent state of regular vigorous activity: jumping out of airplanes, dancing with the stars, and spinning into space with Richard Branson. Summertime is a tough time of year not to be able to play. I'm already missing playing catch with the boys, riding bikes, and running amok, and soon, it'll be time to swim, play tennis, badminton, frisbee, hike. You name it, the boys play it. And while Scrabble is fun to play with them, it's just not the same as getting out there and giving ourselves to the moment--the cascading laughter, the competitive fire, the sense of connection, family, and fun (not to mention the yelling and screaming, the hurt feelings, the wounded egos, the trounced on toes...)

If not for the waiting, I'd most likely forget most of the time that I have breast cancer. I wonder, too, at what point can I say I HAD breast cancer? At what point can I say I am a breast cancer survivor? What's next, anyway?

Yesterday, on my way to taking Luke down to West Springfield for his soccer game, I stopped in Northampton at Gazebo, a lovely little lingerie boutique on a side street right next to the famed Iron Horse. The boutique was filled with beautiful bras and panties and other underthings--though I saw none of the thread bare tank tops that I wear--and art that made me walk right up close and really look. The sales woman asked me if I was looking for anything in particular. I lost one of my girls, I said. I'm growing a new one, but so far, she's pretty lopsided, so I'm looking for something to help me feel, and look, a little more symmetrical. Can you help? I'm hoping for red and white polkadots. 36C.


Actually, I did tell her my story--briefly, and with humor. Luke (and his friends Kanye, Lupe and Jay-Z) were waiting for me in the car, and I wanted this to be as painless and quick as possible. I had a mastectomy about four weeks ago. I'm undergoing reconstruction, have an expander in, but am a little lopsided. See? (and here, I put my hands on my breasts, smooth out my shirt, and show her where each sits) This one is higher, bigger, wider. I need a bra that can help even things up. But no underwire. It has to be soft. Any ideas?

She's great, doesn't miss a beat. Shows me four bras, all soft, lovely, with a comfortable shape. She takes me to the dressing room so that I can try them on. I close the curtain, slip off my shirt, my tank, and put the first bra on. It's pink. And it fits. But when I put my shirt on over it, I am struck by the perkiness of my bra-breasts. Boing! Hmmm, this is unexpected. And not entirely welcome. I try another one on. Straps don't fit around me, too tight, strange fit. I am reminded of the only other two times that I have actually gone bra-shopping, both failed excursions that left me feeling pretty dismal about my girls. Much like with my initial mammogram experiences, when I was too tall, too skinny, and too small-chested for the machine, my bra-fitting adventures have run a similar route: my rib cage is too big, my breasts too small, my shoulders too tall. They just don't make bras to fit women your size, sorry, honey. Ah, the indignity.

And then, I try on the last bra. It is lilac in color, with a beautiful v-curve that frames each breast in a silken smooth shape that is really quite lovely. And I am not the bras are really quite lovely kind of person, but this one is. It is so soft, comfortable, and it fits perfectly. Hurrah. I try my shirt on over it, and to my relief, there's much less of a Boing! factor with this one. It feels, and looks, a little bit more like me. Like me in a bra, of course, which isn't very often, but me, nonetheless.

I buy two in the same size and style, lilac and a minty green. They are out of nude. I'll just have to not care if anyone can see the color of my bra under my white shirt. Yes, that is my bra you see under my shirt. Isn't it lovely?

I thank the sales woman for all her help. I am happy to have had such a positive experience with something that could have been difficult. I'll be back after my exchange surgery, I tell her. Who knows what I'll look like then...

Today, I did not wear my new bra. I have decided it is for special occasions. But tomorrow, I will wear it. Tomorrow, we head out to visit a school where Jim is eyeing a job, and where it is probably better that they not eye my lopsidedness. We'll take two cars. After our visit, Jim and the boys will return home. I'll continue to Exeter, where my 25th reunion awaits. I am so excited that it has arrived...that soon I will see dear old friends and classmates who have known me for more than 25 years, since I was a mere 14-yearling, and my girls had just begun to bud, old friends who have pulled me up by the bootstraps, guided me through this most recent tunnel, shone the light on those parts of myself that I thought had long gone withered up and died, and reminded me to find myself, be myself, laugh at myself, love myself. All good lessons.

I am looking forward to getting away for awhile, being on my own some, reacquainting myself with a school and a community that have meant so much to me over the years, and especially, spending time with friends in that ongoing, continuous loop of instantaneous hilarity, connection, and understanding. And then there's the dancing...the real test will be how much can I dance without crossing over into vigorous territory. I'll never know until I try...

Why run? Because you can. It's as good a reason as ever.

Marathon Monday ~

We’re watching the Boston Marathon. On TV. The day dawned and it was clear that I would not be up for braving the traffic to drive into the city, or anywhere in that suburban jungle along the marathon route, try to find a parking spot, a prime viewing spot, watch the marathon, and then somehow, make our way out of there and back home without losing my head. I felt terrible, TERRIBLE, that once again I was letting my boys down. Sure, it would be great to go to the Marathon. But we can’t. Mom isn’t up to it. Again. Blech.

Just yesterday I had to bow out of heading north to Chocorua, NH for my Uncle Herb’s service. I would have loved to have been there to help honor and remember a wonderful, warm, funny man, and to have given and received hugs from all sorts of Damon family members who, like most of us, as we all scatter deeper into our busy days, are harder to gather together in one spot at the same time. But it was not to be. Driving up and back three hours each way in one day would have undone me.

It’s frustrating, not to be up to speed. I think I’m golden, and so go about my usual flurry of activities--performing in the three ring circus of endless domestic wrangling, entangling, and finagling, half-baked home schooling lessons and the rush ‘n go sports schedule, while trying desperately to fit in daily walks, some quiet time to myself for reflection and repose, and those independent creative projects that keep me sane (which is why to so many I am utterly insane). But then I hit a wall of some serious heft and spiral back into the exhaustion zone. So, why is it so hard to find time in my day to just sit quietly, feel unfettered if for but a few minutes, check in with myself? Probably because I’ve never been very good at doing it, and maybe, too, it has something to do with the fact that I’ve got too many things on my plate, and really, as hungry as I am for change and adventure and something new, I’ve little appetite for what’s there.

Bob Lobel keeps cutting everyone off and I wish someone would just tell him to shut up. There are always amazing stories on this day, and we want to hear them. Each and every runner, or wheelchair competitor, has a story. This is where inspiration comes from: the Hoyts, the wheelchair athletes, the everyday runners who push through mountains to get to the finish line, Lance Armstrong and his LiveStrong spirit, and particularly this year, the Kenyan runners who have endured and defied so much to be here. We are curious about the personal stories of the wheelchair athletes, every bit as world-class as the elite runners, but there is not much revealed. We’ve recently watched the amazing documentary Murderball, and wonder if any of these marathoners ever trade in their streamlined chairs for the rugged battering rams of quad-rugby. The front pack of the elite men have separated itself from the rest of the group, and now run in a v-formation, a patch of migrating Canada Geese, working together to get to the finish line. I could watch the elite runners, with their long, magnificent, effortless strides, for hours. This is how to run.

When I was a kid, either my Mom or Dad would take us in to see the Marathon, and we’d jostle into spots along the curb, as part of the Screech Tunnel at Wellesley College, or at Heartbreak Hill, where we’d get an eyeful, runners either making it up or not, unraveling, cramping, swearing, vomiting, defecating on themselves before finding the strength to somehow battle on. A few times we made it to the finish line to watch, in amazement, the top runners cruise through, and then the everyday folk, who had climbed mountains to simply get to the starting line, persevered through the course, slapped 26 miles of hard pavement under foot and lived to tell about it. And there, we'd see the same souls we’d seen at Heartbreak Hill, now finishing the race, shorts defiled, tops emblazoned with their breakfasts, medals of honor, all. When I was a kid, I’d watch them and cry. It seemed a bit surreal--scary, moving, wonderful, and god-awful, all a the same time.

Today, we are inspired. How could we not be? Watching the marathon always makes me want to go out and do something way out of my comfort zone, set up some kind of training regimen, hit the streets in defiance, and just go. (sounds precariously close to Just Do It, and you get an idea of where that ad campaign had its nascent roots, some ad exec watching the marathon, perhaps?) Of course, it all depends on how you watch it. If you’re watching it on TV, the way we are, you see the elite runners, gliding along through the course as if they were out for a Sunday stroll through the park. But, go to the finish line, and stay, long past the elite runners have come in and been greeted by Mayor Menino and the parade of photographers, you’ll see the real people coming in, the ones who lost track of their bowels halfway up Heartbreak Hill, the ones sporting a touch of vomit on their shirts, the ones who look as if they just might keel over and die. If you watch it here, you might receive inspiration of a different kind. No thanks, I don’t ever want to do anything like this. This is the impression left on me when I was a kid. Maybe I'll play rugby instead.

When Luke was little, maybe 3 or 4, we took him to the Museum of Science in Boston to see the Everest I-MAX film at the Omni. After the film had ended, Luke turned to me and said, “Mom, I don't ever have to climb that mountain, do I?" Of course, I told him he had to, Sorry, honey, it’s required. When you turn 18, you’ll head up. Better start training, buddy. That’d be just the kind of horror you could inflict by teaching your baby all the wrong words for everything. Oh, the fun you could have. But at what cost?

No, sweet child, we told him, you don’t ever have to climb that mountain. You’ll have your own mountains to climb.

But today, since we are watching on the television, we hardly notice the chaos of the race. Ernst van Dyke cruises to an easy win, and we focus on the women’s race, which has taken an exciting turn. The two lead runners are running neck and neck, each pushing the other to extraordinary heights of athleticism, competitiveness, and drive. The boys and I are screaming along with the crowds as they each try to lose each other with less than a quarter mile to go. And then, it’s over. The Ethiopian runner has somehow unearthed a final kick that has propelled her farther faster than the Russian woman. Amazing. And we see, too, that if we had gone in to watch, we would not have been able to watch this drama unfold. We might have seen other dramas, the stories amidst the chaos, the chaos itself--but there are always trade-offs. For now, the women's race has made the day. The men’s race seems unexciting in comparison. Boston Bobby, having ditched the pack on the hills, makes his way to the tape, for his fourth Boston win. We watch for a while longer, while the focus shifts to Lance Armstrong and his posse. And this man, who has climbed more hills on bike and foot and in spirit, and who seeks the bigger and tougher mountain always, may have finally met his match in this marathon. We are moved, again, by the capacity for human achievement, the strength of the human will, the warrior spirit, and the grace of landing on one’s feet, only to start climbing upwards again.

WE, too, have chosen our next mountain to climb. When life throws unexpected mountains at you, sometimes it feels good to chose your own. We’ve decided we’re going to run our own marathon. It’s called the Breast Cancer 3-Day , and its held in major cities throughout the US in the summertime, and it benefit’s the Susan G Komen for the Cure Foundation. We’re working on putting together a team that will walk 20 miles a day for 3 days, for a total of 60 miles, and raise lots of money for breast-cancer research. Like any well-planned, reasonable hike, there are plenty of breaks along the way, for re-fueling, staying hydrated, changing sweaty socks, tending to blisters, cooling off, dilly-dallying, taking in the masses, and replenishing one’s resolve. A traveling village, filled with pink tents, greets each walker as each day’s final pit stop. Along with the pink tents, (not to be confused with the Red Tents), the village will be teeming with medical services, food, entertainment, and thousands of walkers, breast cancer survivors, supporters, fundraisers, people like you and me.

So who’s with us? We are in the process of naming our team (Hens, Hens, with our funny upturned ends? Team Lizard? Zilrendrag? Personally, I like the Blue Footed Boobies. We could all wear blue sneakers. And the logo will be, of course, way-cool, because boobies are so beautiful.) We’ll let you know the details as they develop. For now, click here for more information: And if you think you might want to be on our team, and actually walk with us, or be on our team, and donate money, please let us know!

Later in the afternoon, we head to the bike path in Turners Falls to start our training. Luke flies about on his bike, while Dominick and I walk along the canal for about four or five miles. 15 to go. And tomorrow is another day. 3 1/2 months to go.

Saturday, April 19, 2008


Saturday ~

Today, I wear an old shirt of my grandfather’s. It is pink, with white stripes, crisp, a bit oversized. I am perfectly disguised. In my head, days are spinning about in an endless game show countdown:

2 more days until the Boston Marathon. I love the marathon. I love the fact that I don’t have to run the marathon. The boys and I are hoping to drive in to watch this year, unless cold rain is forecast, and then we will wimp out and stay home and watch it on the tube.

3 more days, perhaps, until I hear from the oncologist about the Oncotype test results, which will confirm what the pathologists have said all along—that I had the GOOD kind of cancer, that I am NOT a candidate for chemotherapy, that the Tamoxifen will BLAST the remaining cancer cells out of my body without ANY gnarly side effects, that my prognosis for living a full, healthy, LONG life is excellent, that I will truly be OKAY, and maybe even BETTER than that.

4 more days until I can put on some kind of a bra and look like I have two somewhat symmetrical girls again. Not that I’m self-conscious, but…it might make other people uncomfortable, after all. AND I'll be able to do laundry again. This is one thing that could possibly make me say Hallelujah.

5 more days until I head down Route 2, up 495, 95 and into Exeter for my 25th reunion, where I will meet up with beloved old friends and classmates from all over, try to cry, laugh, and dance as unvigorously (and yet as fully) as possible, so my expander does not end up in the middle of my chest, and wrap myself around all the living, breathing Juju that’ll be dancing, laughing, and crying with me.

11 more days
until my next expansion. And I thought I was lopsided now!

18 more days until my final expansion. These last two are over-expansions. I already feel over expanded. By then, I’ll be toppling over for sure. But I’ll also be able to do whatever the heck I want to do, because—here’s the irony—this day will also mark six weeks out for me, the day at which I can dispense with the quiet puppy routine and get to it! Of course, by then, I’ll probably have lost most of my muscle mass and will be so pitifully out of shape that I won’t be able to do a damn thing, and simply walking up the length of our driveway, trying to cross Main Road without getting steamrolled by a speeding car, and lifting the morning newspaper out of the mailbox will feel vigorous.

39 more days
until I can have my next surgery, the exchange surgery, when I can say good bye to the expander and hello to my new girl. Dr. Pitts’ office is working on scheduling it for early June. This day will also usher in a new era of no lifting/no vigorous activity for another four weeks. Curses.

67 more days until I can return to being my usual self. Of course, that usual self is something different entirely. So, no more usual, since a new normal has begun, and this reconstruction, after all, is only a piece of a larger work in progress.

to be nobody but yourself, in a world which is doing its best, night and day, to make you everybody else, means to fight the hardest battle which any human being can fight; and never stop fighting ~ e.e. cummings

Friday, April 18, 2008


Friday ~

Today was a pretty vigorous day. I know I'm not really supposed to have vigorous days, but sometimes you just can't help it. I didn't intend it that way. It was to be just another Friday, a day when the boys and I would do some catch-up work, maybe take in some sunshine at the picnic table, check ourselves for ticks, that kind of thing. The only thing on our calendar was to take the dog to the vet at 2:45. Nor did it start out that way. The sun eased me out of my dreams (odd ones, all) early, and the birds started singing their morning songs, and that was it for me. My eyelids felt stuck shut, all that irritating, if not lovely, tree pollen making its way through my system. I did my usual, dozing for a while before stretching the numbing tightness out of my chest, and flicking on the tv to catch the morning's headlines and weather. Dominick did his usual, slowly sliding open my two pocket doors to see if I was awake, then climbing in with me to talk shop, show me his latest splinters, and muse over what the day would bring. We can hear Jim in the kitchen downstairs, getting his coffee, letting the dog out, slapping the newspaper on the table. And then, to our surprise, we hear Luke, rising earlier than usual, his door opening, and his big sleepy feet making their way across the floor, down the stairs, and into the kitchen, where the sports pages await. Dominick and I eventually rouse ourselves for breakfast, and since the hour was still early, the morning feels unrushed and easy: no one packing up to go anywhere, no one heading out the door, already late for an appointment, a basketball tournament, or baseball practice. Dominick soaks his feet, we try to tweeze out the splinters, Luke decides he, too, would like to soak his feet, and finally, we head upstairs to get ready for our day, making beds, washing up, shedding one skin for another. As Jim leaves for work, we sit on our stools in the playroom, and shake the cobwebs out of our sleepy heads.

There's a certain sweetness about mornings that open up before you like a blank canvas. Go on, paint a picture. Create your day. Do whatever you feel like doing. Yeah, if only.

We revisit our civilization projects, I start some laundry (a seemingly benign venture), introduce two algebra lessons to Luke, while Dominick gets started on a writing piece. Luke goes into the kitchen to get an ice pack for his jammed finger (yes, another injury. can you say distracted?) and announces that someone has "spilled something." Spilled something? I come in to see that the washing machine has not just "spilled something" but has let loose its watery bowels, and is continuing to do so, creating a veritable vernal pool across our kitchen floor and all our of pantry. Peepers on the brain, evidently. We have hardwood floors, of course, so there is some urgency in the situation. This has happened before, when the screens get jammed with sediment from our well, the water valve breaks, suddenly, without warning, of course, and the water just doesn't turn off. And each time, it sends me into instant panic mode. This time was no different, except, somehow, it was. This time, I can't run up the stairs (fish-flop) and get towels. I have to send the boys, who always rise to the occasion, and after several trips, finally bring down enough towels to capture all the water that had spilled out. This time, I can't pick up any of the ten or so soaked towels that have lay twisted and drenched on the floor and weighing in about ten pounds each, nor can I carry them out to the line to dry. Again, the boys, who are somehow used to these domestic emergencies--whether water pouring in through the root cellar walls, lady bugs swarming the house and windows in Hitchcockian fashion, or the washing machine emptying the contents of our well onto our kitchen floor--know how to spring into action. And they do. But this time, I can't move the washing machine and dryer to clean up the water behind, in between, and under the machines. And it may just be too much for the boys. So, I have to call Jim. And you know, I hate it when I have to do that, because well, it always makes me feel like a weak, incompetent, overly-dependent, nagging bitch: "The washing machine over flowed again and you have to come back and help me clean it up because I can't move the machines and we need to call the appliance man and wah wah wah wah." Oy. Wimp. I do hate this.

But I think men like getting those calls. I think it makes them feel manly and needed. Men like to fix things, after all, don't they? And what better ways to make them feel strong and powerful than by letting them fix something? Yeah, well, whatever. But somehow it makes me feel less guilty for having to bug him to come home and fix the mess, my mess.

Jim comes home and ably moves the machines, dries up the remaining water, and offers to call the repairman. He starts the load again, and warns me to watch it closely, listen for the sound of the change in cycles, and turn off the water before it overflows. Yep, got it. I head back into the playroom to try to work with the kids, checking in with the troublemaker in the next room every now and then. But I linger too long on a lesson about lines of symmetry with Dominick, and the last time I check, I am too late: the washing machine has started to overflow again, and though I am quick to catch it this time, I feel woefully stupid. Two times in one day? Hello? Anybody there?! This is a great example of how all that multi-tasking we women have to do can seriously backfire, and bite us in the but-tocks.

Luke, strapping thirteen-year old that he is (and really, I am not being facetious; he's been working out with weights and is growing some pipes, man! :)) is able to move the washing machine out bit by bit so that we can mop up behind. Dominick sits atop, using a mop handle to move a towel back and forth over the mess. Luke pushes it back into place, and I think we are saved. For now.

By the time the Appliance Man, a big, tall guy who gregariously offers tips on preventative measures we can take to make sure this doesn't happen again, shows up, I am calm again. I am pleased with myself that I have not cried, despite my being pre-menstrual and generally whacked. Earlier, just when I was starting to wonder about cleaning up the towels and the mess and somehow figuring out lunch, a woman Jim works with has called from the local food co-op: would we like her to pick anything up for us? Lunch? Dinner? Lunch? Did she say lunch? Twenty minutes later, she delivers us a feast: spinach pies, tabouli, and fresh, organic strawberries. I am so grateful. Thank you, Paula! The boys and I enjoy our picnic, this unexpected gift of delicious, at the table outside. And slowly, the tension unraveling, we ease out of our morning stress, slurping strawberries, enjoying the crunch of the Tabouli, and the warm spice of the spinach pies. And it's hot! Dominick runs to check the's 104 degrees. Yeow! We sit and soak up the sun as long as we can before returning to work on various projects in the shade.

John, the Appliance Man, calls the office to order a new water valve, and tells me to expect it sometime next Wednesday. Wednesday? I start counting...Friday, Saturday, Sunday, Monday, Tuesday, Wednesday? That's a lot of days without being able to do laundry. I'm not sure if we can go that long. Dominick suggests that we wash our clothes in the stream. Uh-huh. That'll work.

$159 later, we get ready to leave for the vet. Before we go, I attempt to drain the remaining water from the washing machine, but as I spin out the rest, I hear a splash in the back of the machine. Somehow, the drain pipe has broken, releasing water onto the floor yet again. Back on top goes Dominick--little wiry kids are so handy to have around--to sop up the spill. And this time it is a certified "someone spilled something" kind of spill. No big deal, but just enough to send me spinning out of the house, eager to get away from it all.

We drop Luke off at the golf course for his first lesson of the season. I have sensed his anticipation, his excitement all morning, in the way he has meticulously changed into his golf gear and black Tiger Woods hat, packed up a bottle of cold water, his new golf glove, balls and tees, and now, grabbing his bag out of the back of the car and slinging it on his shoulder, he hurries up to the clubhouse.

The club opens tomorrow, so for now, there is a wonderful quiet about the course that seems to be teeming and greening with new growth. Dominick and I continue on to the vet, where Daisy, eyes wide with the fright that comes from having been too many times, crouches in the corner and makes life difficult for Dr. Morrissey, who has to coax her into a broader space, so she can take blood for her heartworm test, administer innoculations, feel her belly, and--the absolute very worst--clip her toe nails. Daisy is trembling, but then, she is all done. She eagerly takes the biscuit from the vet, chews it once, and spits it out onto the floor. Must be the healthy kind. She only likes the junk food milk bones, sorry.

$268 later, we drive back to the course to pick Luke up, who's mood has lifted even higher. Golf is good for Luke. We should all be so lucky as to find something that we feel passionate about, that brings out our best, and grounds us in our innermost connections and natural rhythms.

Later, we head to the Wagon Wheel for dinner. The sun has started to sink, leaving an orange sky in its wake. The temperature drops quickly. This is Otavalo weather--bright sunny warm days, cool, crisp nights for sleeping well. We head home. Luke and Jim have to wake up early, early, to drive out to Plaistow, NH for a 7:30 am game on Saturday. Who schedules these things? The blue light winds me down, and I sleep, aware that I have survived the vigor of the day just fine. In the morning, I hear Luke and Jim stirring. It's about 4:30 when they leave. I wait for Dominick to find me, but he never comes. I sleep again to the sounds of birds awaking to the first light, and dream of some kind of party at my grandparent's house, with food and friends and family. And when I awake for good this morning, I open my shades to a new sight, and see that overnight, the buds have blossomed on the trees, in shades of reds and greens and yellows that fill the landscape with fresh spring color and remind us of change and cycles and life, and that hope does, indeed, spring eternal.

Thursday, April 17, 2008

Under (Re)-Construction (o) (O)

Wednesday evening ~

After today's expansion, I am truly and undeniably lopsided. It's okay--and it's actually kind of funny--but until I can wear some kind of padded bra to somehow even things out, I'll have to go about my business feeling and looking a bit ridiculous. When my left was still smaller than my right, the lopsidedness didn't feel so strange. But now that my left is larger than my right, and oddly-shaped at that, from the higher-perch, vertical shape, and super-tight fit of the expander, it feels just plain weird and whacked. And lopsided.

I spend about five minutes in front of our in bathroom mirror, contracting my left pec muscle and watching it ripple and roll in irregular, choppy waves across the taut mound of skin that currently defines my left temporary breast. Since the skin is now pulled even tighter across the muscle, I can make out the visible outline of the muscle, and it's just too cool to not mess with it. I've gone from having a nightmare emblazoned on my chest to having my own sideshow. I am now a true circus geek. Just don't expect me to bite the heads off any live chickens anytime soon.
I know, I know. How silly of me. Responding to my ballyhoo, Dominick actually laughs out loud with me, telling me that my left "breast" looks like a "big ball." Don't think this moment is lost on me--it isn't. I am acutely aware that I am able to stand topless in front of the mirror--and my youngest son, who has grown up without the usual cultural discomfort around nudity and body parts--and laugh about my chest, which suddenly strikes me as a real work in progress. It's just how I have to think of it. Long gone are the kaleidoscope of colors. And each week, the shape changes. And it does, in a way, right now, resemble a ball--but with a moving fish-flopping muscle just under its skin. Comically, it sits up so high that after the next expansion, it might just sit directly under my clavicle. And then--who knows where it'll travel. To my throat? I wonder, did my breasts used to look more like this? Before breast cancer, before turning 40, before nursing, before having babies? Were they bigger, more ball-like, higher-up? Gawd, I hope not. I much prefer my 42-year old incarnation, if that's the case.

At my morning appointment, Dr. Pitts' assistant Christine fills me up with another 90 ml of saline--but as soon as the last 20 or so ml are syringed in, I feel an immediate pull in my chest that tugs on my psoas and reverberates throughout my stomach, making me feel slightly sick to my stomach and light headed. Happily, Dr. Pitts comes in to inquire--and they agree to remove 30 ml to relieve some of the pressure.

I have two expansions to go--I'll take next week off (and enjoy not having to go to my 25th Exeter reunion feeling and looking even MORE lopsided than I am now), and finish the following two weeks. 3 weeks out, 3 weeks to go, I've learned more about this process--how the expander not only stretches skin but muscle as well, that since the muscle is attached to other muscles--psoas, lat, etc--those muscles get pulled and stretched as well, and so on, and so on. All this is beginning to make more sense. Sort of. I think it takes a lifetime to figure out how your body works, what makes it special, what it needs, when it likes to sleep and in what position, what it likes to eat, and all the other idiosyncrasies that makes it unique and yours and yours alone.

After my final expansion, I'll need to wait a minimum of three weeks before I have the exchange surgery, at which time Dr. Pitts will re-excision my scar (this will be the third time), remove the expander, and replace it with a much softer, much more realistic looking and feeling silicone implant. No hard edges. No awkward shape. And she is confident she can correct the 2 mm disparity between the lower edge of my right breast with that of the left expander. As for the lopsidedness, that will help, as will the minor lift she'll perform on the right breast. Symmetry is hard work. Surgery might take place in June.

Since the three weeks in between will be puppy-run-free days for me, I am trying to figure out whether some kind of a family trip would make sense. I am hoping that I'll have some strength left after giving up all vigorous activity and 5 pound plus lifting all these weeks. All that fair weather fun requires more oomph than I've been allowed to give. And I am eager to give it, believe me!!

The boys and I spend the afternoon at the wonderful DeCordova Museum and Sculpture Park in Lincoln, MA. We are mesmerized by three floors of photographs, a wonderful exhibit entitled "Presumed Innocence." We head outside to explore the acres of gardens and sculptures, and take our time. The boys, clearly inspired by some of the eerie photographs in the exhibit, do their best "weird child" imitations for each and every photograph I take of them. Eyes staring vacantly into another world, heads drooped at an odd bent, mouths slightly open, they find awkward little spaces in and around the different sculptures to pose and create their own "Presumed Innocence" works. It seems as if we laugh throughout the whole day. At one point, we all proclaim that our stomachs hurt from laughing so hard, and itt feels so good to laugh with my boys again. If belly-busting laughter counts as vigorous activity, it was well worth it.

Thursday ~

5 days left until I can wear a bra and try to even things out. In the meantime, I peruse the shirts hanging in my closet to no avail--gone are the over-sized, boxy tops I used to wear, and in their place are form-fitting shirts that would deliver news of my lopsidedness in howler fashion.

I might as well have some t-shirts made up:

Check back next week,
maybe by then they'll be the same size
and you can stop staring (loser)

Symmetry is overrated

Has anyone seen my left breast?

My left breast went by way of the surgeon
and all I got was this lousy expander

Who says my breasts have to look the same?

or, simply:

Under (Re-)Construction.

I find a print button down, with pockets on the breasts, perfect, that disguise everything nicely. I am able to go to my doctor's appointment (this time, non-breast related; a trip to see the orthopedic doc who hopefully will figure out why the outside of my left knee is still numb after minor surgery back in January to remove a small lipoma from the inside of the same knee), and then meet two friends for lunch at Tofu-a-go-go, a colorful little spot in downtown Greenfield that serves up tasty sesame peanut noodles with spicy tofu triangles and "dinky" soft tacos (their word choice, not mine; Kim said the tacos weren't dinky at all, but quite hearty). It feels fairly glorious to be out with friends, a return to some normalcy, though it's a new normal. Thank you, Kim and Bettie!! And it is hot! In true New England fashion, we've sidestepped the gentle loveliness of an awakening spring all together and slid right into summer heat. Eek.

I head home, aware that driving is feeling more comfortable, though the sharp turns still offer acute reminders of the soreness that resides on my left side--and my diminished strength and coordination. This is what feels strange to me: feeling clumsy, and not as strong as I usually do, and compromised. It's a new feeling. And I know I'm lucky that I've gone through 42 years without feeling it to this extent.

My friend Nancy arrives to chat, join me in a walk, and give me a massage--so relaxing!! My neck, which has been talking to me since yesterday's fill-up, and threatening to explode in an all-out pre-menstrual migraine, feels softer, lighter, easier. Thank you, Nancy! It feels so great to be able to spend time with friends, get out and about, and receive the many blessings of the day.

I hope that wherever you are, the light and warmth has made its way into your heart and home and brightened your day. This time of year, the sun seems so high in the sky that one wonders if it will ever sleep, and instead grow noctilucent, spreading its shine over the moon's territory, and keeping us all up way past our bedtimes.

I'll end by sharing something I just learned--some cyber-language for breast-speak. It makes me feel so special to have a sign just for me: (o) (O). I've gone from having o o (*) (*) to {O} {O}, then (@) (@) and finally, (+) (o). Still (o) (o), however imperfect. (But what the heck are hanging tassles breasts??!! ) What's your sign?

Finally, something other than smiley faces….

Perfect breasts(o)(o)
Fake silicone breasts( + )( + )
Perky breasts(*)(*)
Big nipple breasts(@)(@)
A cups o o
D cups{ O }{ O }
Wonder bra breasts(oYo)
Cold breasts( ^ )( ^ )
Lopsided breasts(o)(O)
Pierced Breasts(Q)(O)
Hanging Tassels Breasts(p)(p)
Against The Shower Door Breasts( )( )
Android Breasts o o

Tuesday, April 15, 2008

It isn't the mountain ahead that wears you out; it's the grain of sand in your shoe. ~ Robert W. Service

She says days go by I'm hypnotized
I'm walking on a wire
I close my eyes and fly out of my mind
Into the fire
~ Shawn Colvin

Sometimes, the mind is too unsettled to write. Thoughts have been jumping about in my head for days, and forming words and sentences that disappear as quickly as they appear. If I only had Dumbledore’s pensieve, I could unload some of these memories that seem to be clogging my pate, and lighten my load.

I wake in the middle of the night, aware that my body hurts, that my breathing is light and shallow, that my mind has not fully relaxed into restful sleep mode, and is still hypercharged with mutinous thoughts and a stubborn flow of words and sentences that won’t let me sleep. I am writing instead of sleeping. I am not actually writing, with pen and paper, pencil and composition notebook, or laptop, but rather composing thoughts in my head that I need to write down, but cannot, like nixies, stranded in a remote outpost. April is, indeed, the cruelest month, but soon the ferns will unfold their fiddleheads in a unraveling spiral of joy, and all grudges will be by-gones. I do this when I haven’t been able to spend enough time writing during the day, when opportunities for self-directed creative play have been few and far between, and the ensuing, blocked flow has suddenly bolted the gates, flooding my synapses.

It is during nights like these, when it seems that I am not meant to sleep, but instead face all the unresolved wounds of life, winding through the suffocating anxiety, the leering regrets, and stifling wanderlust, and caught in a snare of wakeful exhaustion. Mental disrepair aside, my body, too, talks to me. And after all these weeks of abuse and neglect, it’s not wonder, that at this wee hour, when the wetland critters sleep in the murky deep, my body goes on strike, telling me in no uncertain terms am I to continue to mistreat it. So, I listen. I hear you hips. I hear you piriformis. I hear you rotator cuffs. I hear you poor, sore, partially numb, forever post-op left knee. And then there’s my iliopsoas muscle, screaming at me, from all that cowering, the shortened, tightened psoas pulling my left side into itself in a desperate act of self-protection. I have no choice but to grab for my foot, pull it behind my back, and try to stretch it out. My pec muscle flips, flops, flaps. (I have figured out that when you are right handed, your left pec muscle does a ton of work, holding things in place, steadying, applying pressure, allowing the right hand to perform the intricate surgeries of domestic life.)

There are ample reasons for my disrepair. I was, after all, a fairly rough and tumble kid, a tom-boy, more often than not sporting a black eye and skinned knees. I was happy to muck it up with the neighborhood boys, fighting for the football before tackling them into leafy piles in our common yard, the same boys with whom I would later practice kissing, riding our bikes behind the dumpster down the street, where we’d stop against the grainy grime of our suburban downtown, lean forward, and press our lips together. I’d always be sure to stay on my bike, a blue banana seat Schwinn, with the very high handle bars, easy rider, and ready, always, for a fast get away. It was pure innocence, my first taste of rugby life. The same bike would land me on my accident-prone arse many times. It wasn’t a huge surprise, then, that I started having sciatica pain in my left but-tock (I love saying that word, and for best results, pronounce the way Forrest Gump does) at the age of fifteen, after trying to heave a chest of records down a set of stairs by myself. A leg length discrepancy most likely contributed to continuing problems with my piriformis, my pelvis, my but-tocks. This disparity renders my right leg shorter than my left by a large enough margin for it to be visible at my knee caps and my hips and all the way up to my shoulders, where it intermingles with an old whiplash injury from my rugby playing days in college, and wreaks havoc on everything: posture, pecs, and rotator cuffs, shot to hell from years of playing squash, lifting and carrying heavy babies and toddlers, and nursing said tantrum-throwing babies in awkward positions.

At this point in my life, I survey the scene and think battleground. Getting old sucks. And you know, I’m not even that old.

Since I had the first surgery on my bazooka, (R.I.P.), back in February, I have not been able to get my usual regular chiropractic (and attitude) adjustments to keep my pelvis balanced, to release the tension in my shoulders, and alleviate some of the neck pain. I have not been able to do my usual yoga, weights and everyday activities that keep me limber and strong. I have spent far too much time on my right side, on my buttocks, and in awkward positions for hours at a time on operating tables. And there’s the stress. Everyone's got that. And now, everything has gone to shit. My body is revolting. At 3 am, it’s an all-out mutiny. My hips cry out for mercy: “No more sleeping on just one side!”, my neck aches, completely undone by the constant onslaught of O.P.I.s (Outside Pernicious Influences), my piriformis muscle spasms in its chronic tension, sending shooting pains down my backside into the leg, and my shoulders scream at me, demanding equal treatment, "What about us??!!"

What’s a girl to do? I have three more weeks of this torture, and I am hoping that I have not over-done the vigorous activity that has been forbidden, though I worried a bit this past weekend, when I asked my mother to come help me with the piles that have been building up around me, garroting my sense of harmony and balance, and I ended up rifling through closets and drawers and under-sinks for the bulk of the day, which ended with me in a pile of exhaustion in my purple chair. Exhaustion is just one risk of over-doing at this point; lopsidedness is the other. Dr. Pitts has explained to me quite patiently (because she can tell, I know, that this keep-the-puppy quiet thing is hard for me, a rebellious over-doer) that over-doing, lifting, or vigorously exercising can trigger a host of problems and difficulties that may result in a whacked out, unhappy expander that just might move too far to the left, to the right, up, or down, and cause Trouble, capital T. And we don’t want that. I already look a bit lopsided, and Dr. Pitts said last week that she “could fix that” but I do worry that tomorrow, when I see her again for a second expansion, she may just tell me that Now I’ve done it and I’m a bad dog and have really screwed things up and will look like a lopsided whack job.

My grandmother, who had a mastectomy at the age of 51, did not have reconstruction, and so wore a “blow-up bra.” She used to joke that she’d ask my grandfather every morning what size he wanted her to be that day. And there were times when she was lopsided, and would laugh about it, because, well, that’s what we do.

Lopsided or not, the difference in how my left chest looks these days is quite remarkable. Long gone are the purple-ish hues of post-operative bruising, the berry stains that splattered across, underneath and above my newly shaped fakie, and alongside the incision, which now looks much less catastrophic. The expander is doing its job, stretching the skin to make way for the silicone implant that will be surgically exchanged for the saline expander in a summer surgery. The skin feels taut all around it, and when I lift my arms above my head, the skin under my left fakie puckers, as if it can’t be stretched too much more, and might just pop after the next expansion. One of the things that often wakes me up in the middle of the night is the feeling that I’ve forgotten to take my bra off, and it’s an underwire bra, and it’s on too tight, the wire digging into my ribs. But it’s not a bra, of course, it’s the edge of the expander, jabbing my flesh and bones and creating a deep hollowed perimeter of ache in my chest where my breast used to be. But it’s better, just tight, and now that I am allowed to stretch my arms above my head, and have graduated to being able to do so with most of my mobility back and with a modicum of pain, it feels okay. I need a few more fill-ups, after which I’ll have a few weeks of a return to full activity (I’m trying to imagine what that would be like: not worrying about feeling the flop of the fish when chopping parsley, sweeping the porch, or smashing the skin off garlic) before heading back to Newton-Wellesley Hospital for the exchange operation, when I’ll say sayonara to the saline expander and hola to the softer, friendlier silicone implant, and to four more weeks of being a puppy on restricted activity. And let’s not forget the nipple! Two months after the exchange surgery, I will greet my new nipple, Hello nipple!, and two months after that, enjoy my first tattoo (I’m still thinking about having a lizard tattooed around my new nipple, ya!).

Just this morning, Dominick told me, “Don’t worry, Mom, it’ll look like a real boob soon.”

Who’s worrying?

Friday, April 11, 2008

"This outward spring and garden are a reflection of the inward garden." ~ Rumi

Friday ~

It's hard to believe that the temperature reached to over 70 degrees yesterday, when I sat out on the deck and took in the sun without nary a thought or concern about being chilled, and today is as different as if I had traveled many hours on a jet airplane to another continent and climate. But this is spring in New England, when things change so rapidly, and the transformation from filth to splendor is majestic and swift.

"The sun was warm but the wind was chill. You know how it is with an April day. When the sun is out and the wind is still, You're one month on in the middle of May. But if you so much as dare to speak,a cloud come over the sunlit arch, And wind comes off a frozen peak, And you're two months back in the middle of March."- Robert Frost

Today, April's rain have come, because April come she will, and she has, with a quiet chill that has all but silenced the peepers and wood frogs that have filled our wetlands with truly deafening vibrations of song. I suspect that all the rain we are destined to receive over the next four days will green things up mightily, flood the small streams, and bring out the earliest buds on the tops of the trees. Deservedly called the "cruelest month, breeding lilacs out of the dead land, mixing memory and desire, stirring dull roots with spring rain," (that's TS Eliot) April bemuses and delights.

But it is to these natural rhythms, however predictably off-kilter, to which I try to align myself. Rather than let myself be overhwhelmed and toppled over by my sons' sport schedules, or by the endless to-do lists constantly forming in my head, I try, try, try to lose myself instead in the slower-paced rhythms of the natural world. This is my new task: to reconstruct my self, my time, and my space in ways that keeps me connected to and replenished with that which nourishes the trio of primal spirit, body and mind, constituting well-being, manifesting joy, and grounding peace. There are small victories out there amidst the rubble of defeat; it's my challenge to notice them, and turn my appreciation forward, one step at a time. Hearing from my oncologist that I will most likely not have to do battle with chemo is a victory of sorts, to be certain, and one I hope to fully appreciate and enjoy once the oncotype test is back. But my joy is muted by news of other kind, that loved ones are suddenly facing cancers of their own and other treacherous terrain, and with that comes the opportunity for me to help them, to keep the Juju circulating, to open wide the collective spirit and infuse the circle with the small victories that make living in this precarious world tenable. That the world continues to spin astounds me.

I take my cues from April. And I send you all LOVE.

Thursday, April 10, 2008

If you're going through hell, keep going. ~ Winston Churchill:

Thursday ~

It’s been a long while since I had the time and quiet to sit and write. The week’s been a busy one, and today the boys are off in Vermont, no doubt enjoying the mild sunshine and startling freshness of air that greeted us this morning as we headed out. After spending midday with my visiting nurse (I have been formerly discharged, but will miss my new friend Sara) and occupational therapist (we are working on how to minimize all the inevitable upper-body activity that goes with being a mom), I have been trying to get to my stuffed in-box—zillions of e-mails, unopened mail, and my long neglected blog.

First of all, thanks to you all for keeping me in your thoughts. Your awesome Juju-brew has clearly guided me through some very tough, dark days, with light and laughter and sweetness. I am eternally grateful. I am feeling hopeful and relieved, with quite possibly the worst behind me, but my celebration will be subdued. I have friends battling cancer, and it seems more bad news arrives daily. And I worry, worry, worry about our changing world, the catastrophic cost of constant, chronic conflict and war, the unimaginable pain and suffering inflicted upon so many women and children in Darfur and beyond, the ramifications of corporate and consumer greed, the lack of any kind of viable response to global climate issues by our ill-equipped, brain-cell challenged government, and what might we be leaving behind for our children, and their children... There are so many unknowns ahead. And yet, springtime convincingly demonstrates the lure of renewal, change and growth, blissfully beckoning us from our winter crop of culled deprivations and darkness into brightening skies and warm, earthy undertones of good things happening. I will stay positive.

Before I met with Dr. Paula Ryan, the medical oncologist, and Dr. Michelle Specht, the breast surgeon, this past Monday, I knew there was a chance that Dr. Ryan would tell me I would not have to have chemotherapy. Tamoxifen, I knew, was a sure thing. But chemo, Dr. Specht told me, was something that Dr. Ryan was not yet sure about. I was in the “gray area” and she would know more by my appointment. From the start of my diagnosis, I have prepared myself for the worst. Preparing for the worst does not mean expecting the worst, or even believing the worst case scenario will unfold, but rather, allowing the mind to simply go, wander the dark recesses, imagine having to face my biggest fears, and then wind back again, and assert to myself, reassuringly noble and strong, that I would still be okay. Since my diagnosis many weeks ago, chemo has lurked in the shadows like some sinister beast. I have been certain that I didn’t want to have to engage in any kind of battle with chemo if I didn’t absolutely have to. I had started to research alternative therapies, and collected names and numbers of breast cancer patients who opted out of chemotherapy treatment in favor of therapies that built their immune systems up and reworked their body’s natural balances to restore overall well being. I believe strongly in a blending of therapies and treatments and medicines, but was having a very hard time with accepting and assimilating chemotherapy into the realm of possibilities; but my warrior spirit was lying in wait, ready to be called up, again, to work with this intruder as best she could, to somehow welcome these drugs into my system while minimizing and repairing the damage they would leave in their wake. I figured on losing my hair and trying to convince myself that I actually look half way decent bald, losing my ovarian function and skyrocketing into menopause, losing my energy and feeling like an 80-year old woman on bad drugs. Given my misgivings, I have walked on with caution. After all, the local oncologist, with whom I met after my first pathology report came out, said I would “definitely need chemo, given my age.” And the local surgeon, Dr. Fox, reminded me of the probability that I would need chemo when he removed my drain, a little over a week ago. “You’ll most likely need chemo.” So, despite hearing that I was in the “gray area,” I left myself open to whatever came my way on Monday.

This past Monday ~
My mother arrives in the morning to stay with the boys while Jim drives me to Boston. Luke begs me to let him come with us. Since he was gone all weekend, playing in an AAU basketball tournament in Connecticut, we have not seen each other for a couple of days, and I know he misses me, as I miss him. Jim drove him down both days, while Dominick and I stayed at home and putzed about, taking walks, watching movies, and organizing my CD collection (letting go of old, worn out stuff on the outside is the first step to letting go of the same on the inside). I look forward to having the energy to go with Luke to some of his tournaments and cheer him on, and since the spring soccer season has also begun, I know there will be ample opportunity. But today, given the amount of driving and waiting in hospital lobbies that the day will require, I explain that it is best that he stays home. This has been the hardest part: the boys just want their mom back.

The Yawkey building at Mass General sits aside a rubble of construction, but the building itself is beautiful, with lots of windows, allowing streaming light to enter the offices and waiting rooms with a warm, sparkling feeling that is usually absent in most hospitals. I am always grateful for the presence of natural light and for the healing, calming effect it has on a space—and on me. I am amazed by the amount of sunlight the windows have been able to capture; despite a sunny start in Gill, as we drove closer to the city, we could see a large storm cloud engulfing the skyline, and when we emerged on the top floor of the parking garage, we were surprised to feel such bracing, wintry air.

The wait in the lobby is short, and once in the exam room, Jim and I wait, in nervous silence, for several minutes before being greeted by Dr. Ryan. Dr. Ryan is the Director of Breast and Ovarian Cancer Genetics and Risk Assessment Program. I know I am in good hands, and I instantly like her. She’s about my age (though at this point I am quickly realizing how terrible a judge I am of other people’s ages), with a great, warm smile, and cheerful disposition: a winning combo. We spend the first hour reviewing any pertinent medical history (gynecological history, major surgeries, illnesses, family history of breast or ovarian cancer), and recapping my typical though tumultuous road through diagnosis, lumpectomy/biopsy, decision to have a mastectomy, surgery and sentinel node biopsy, and initial phase of recovery. I am aware of the acute anticipation I feel in waiting to hear her final decision about treatment. I hang on to every word, and she talks a lot, and quickly, so I am all ears. I sense that she too is eager to get to the important part.

Finally, she turns to the most recent pathology report. She goes over all the good parts, similar to the initial findings, but quite wonderfully affirming. After reviewing the original pathology, and the new reports from the mastectomy, pathologists at NWH and MGH both confirm that the tumor, while of the invasive ductal carcinoma variety, was restrictive in size (1.7 cm, type 1) and location, with no lymphatic, vascular, or perineural invasion; the histologic grade—a 1, meaning the cells had features most similiar to healthy cells. There was no node involvement. Part of the skin surrounding the tumor was also excised and biopsied and found to be free of malignancies. And after staining, the tumor, again, is Estrogen and Progesterone receptor positive, and HER2 negative. The cancer is deemed a stage 1, low risk. The five histologic criteria: all good.

And then, we lean forward a bit in our chairs. She begins to talk about how my kind of tumor will respond really well to Tamoxifen, describes how Tamoxifen works, and then this: “I really don’t think chemotherapy will make much more of a difference.” She says the likelihood of recurrence is about 15%. Tamoxifen, a five-year course, brings that down to between 5-8%. Chemo might bring it down one more percentage point. Not worth it. As well, there is no need for radiation. Somehow I feel as if I'm getting away with something. This is a bit unexpected, and frankly, I feel like weeping in relief. But there is more. And I know all too well that overarching optimism is best guarded with caution at times like this. She explains about the Oncotype DX test, which examines my tissue and its unique gene expression or signature, and assesses not only a risk of recurrence based on the aggressiveness of my individual tumor, but the likely benefit from chemotherapy as well. We agree that this should be done. The results should confirm her recommendations, come back without any surprises, and give me the confidence in my particular treatment plan. No looking back.

In some ways, I was prepared to think about chemo, if recommended, and bargain, weighing the consequences, benefits and risks, and perhaps opt out. But I worried that I might always wonder if I had made the right decision, that I would always be looking back, without true peace of mind about my decision. And now, I realize, I might not have to deal with that all that grappling. Exhale.

Once the Oncotype results are back in about two weeks time, and show nothing out of the ordinary, and declare Dr. Ryan’s recommendation to be wise and sound, I will then be able to start on Tamoxifen. This drug comes in pill form that I’ll take every day for about five years. It targets the ER-receptor cancer cells and kills them, boom!, in a sublime act of apoptosis. Side effects are few: hot flashes (oh, fun) and some, um, dryness in the, ah, hinterlands. Totally manageable. Wonderful, really. I profess: Tamoxifen, I love thee. After all, consider the alternative. (For more on Tamoxifen:

It is nearing 1 o’clock, the time of my appointment with Dr. Specht. Our time—nearly two hours—with Dr. Ryan has gone by quickly. We have discussed, too, some clinical trials that I could participate in, which would randomly place me in one of three groups, either treatment with Tamoxifen alone, Tamoxifen with ovarian-suppression (by detrol, a drug, or by surgical removal), or Tamoxifen with ovarian-suppression and one another arm that I can't quite remember. I agree to read through the material and let her know if I am interested in participating. I’m not sure I have any feelings about it one way or the other, I only know I want to stay open. (an addendum: the third arm of these phase III SOFT trials for pre-menopausal women is Tamoxifen with ovarian-suppression, thus rendering you post-menopausal, and then with AI, or aromotase inhibitors: and the drug, apologies, is not Detrol, it is Lupron. Detrol is a drug taken for overactive bladders. Clearly, I have been watching too much world news, when the drug commercials blather on about why we need to take this drug, and this one, and this one. But Detrol??? I am a D-O-L-A, Dola)

Dr. Specht suddenly shows up in a surprise move that bewilders and delights us. We had thought that we were going to have to rush to the building next door, maneuver through the lunchtime throngs, and make our way up to her office in Dash time. But here she is, smiling, and I am so glad to see her. The first thing she says is that she is so excited that Dr. Ryan doesn’t believe I am a candidate for chemo. She even does a little cheer, fists clenched in the classic pump of exaltation—and I am so appreciative of the fact that she is clearly happy for me, that she of all people knows good news when she hears it, and that I too should take in this relief, this joy, and let it settle into the dark crevices of dread and timidity, and soak up the fear and uncertainty, and spin out something better, peace of mind, a sense of freedom, safety, surety. There have been so few times in my life that I’ve felt all those things, that even when I hear this news, something holds me back, and I wonder if they’ve simply got it wrong. But she goes over the pathology report again, convincingly highlighting the fact that she believes strongly that the Oncotype test will not return any additional information, other than what three pathologists have already agreed upon: that the tumor is stage 1, type 1, grade 1, ER and PR-receptor positive, HER2 negative, and best handled with Tamoxifen, and not with chemo. In a sense, she tells me I’m golden. Golden. Lucky girl. I am trying hard to embrace it.

After she quickly examines her surgical handiwork, it is time to leave. Dr. Specht opens her arms for a big hug before I go. A hug would be perfect. Thank you, Dr. Specht! I’ll see her every six months for a long, long while. I’ll alternate mammos with MRIs. This will be a long-term relationship. I am glad, so glad I have chosen her. And I am so grateful to my friend Rebecca Liu, and her friend Linda Duska, for directing me to Dr. Specht in the first place.

We leave the chilly city, where pedestrian travelers are fighting the wind in winter jackets and hats, for balmy, sunny Gill, where, just over the French King Bridge, we spy a girl in short sleeves and bare feet. At home, my mother is outside raking up the gardens, and the boys are working on projects. It is good to be home.

Tuesday ~

We spend the morning in the ER, alas. Luke has cut open his thumb while working on a carving project. Three stitches later, we are back at home. I am glad for my improved mobility on my left side. In the next couple of weeks, Luke will need my help—getting dressed, bathing, etc—and we’d be a pitiful pair indeed if I was as gimpy as I was last week. I tell Dominick he must, must stay healthy. We need all the able-bodied folks that we can get.

Wednesday ~

The four of us pile into Jim’s Fit and drive into Boston. The ride is raucous and the car filled with squawking over where Luke’s iPod might be. I am looking forward to being able to drive myself sometime in the near future. The iPod shows up, hurrah. All that for nothing.

We find Dr. Pitt’s Wellesley office fairly easily, and we are early, so we head across the street to Papa Razzi for some lunch. The tables are filled with business lunchers, mostly young professionals in crisp colorful shirts and sleek ties. I am struck by how clean cut and earnest they all look, with some kind of success--the kind I haven't thought about in a long while--oozing out of their crisp suits and $60 haircuts. Given what we’re used to--the Valley’s scruffy, slacker, hippie vibe—we feel slightly off kilter.

In Dr. Pitts’ office, I meet first with her assistant, who examines my chest, and finds it to be healing well. She then uses a “stud finder” like device to locate the port in the expander, and proceeds to pierce through my muscle to empty two syringes of saline into the expander, for a total of 90 ml of new fill. It immediately feels tighter, and yet there is a softening to the hard edges of the expander as well. With the residual swelling I still have in my pec, my left totally fake “breast” (what was I going to call it? My wrest? My mojo?) looks pretty much as big as my right real one. Dr. Pitts arrives and we go over the soon-to-be good news—she applauds my caution. I’m sure she’s known many women who’ve been upturned and knocked back down again by overarching optimism and misplaced expectations. I don’t want to be one of them. But just for kicks, we discuss what no chemo means for the reconstruction process. I will see her again in a week for another expansion. I can take two weeks off, then return for another fill up, which may just be the last one I’ll need. Three weeks later, which brings me to the beginning of June, I can have the exchange surgery, after which I’ll have to, again, deal with post-op immobility for another four weeks. In the meantime, as part of this go-around, I have four more weeks to go of restricted activity. Though I can now begin to stretch my sore, tight shoulder muscles on the left side to regain complete mobility, I still cannot lift anything over five pounds with either hand (I have told my cat about this, and because she is missing being picked up and cuddled by me, she is determined to be the Biggest Loser, diving headfirst into her springtime regime of squirrel-chasing, tree-scrabbling, and mole-diving, even joining us on walks before her evening weigh in. So far, it looks good, but I’ve warned her that getting down to below 5 pounds just wouldn’t be safe, and besides, we like her jelly belly, and the way it sweeps the floor when she walks), do anything “rigorous” (it’s been interesting to figure out just exactly what this means—washing my hair? shopping for groceries? driving the back, pot-hole infested roads around town? backpacking? cleaning, certainly), put any pressure on the left side (that means no sleeping on that side or hanging out on my belly), or engage in any kind of exercise other than walking, careful stretching, and deep breathing (not to be confused with heavy breathing).

Over the past two weeks, as my mobility has gradually improved, there have been times when I have accidentally activated more of my pec muscle than I intended, resulting in a flopping fish feeling in my chest. I figure the muscle, having been lifted up and set aside to make room for the expander, which just keeps expanding, is having trouble figuring out how its supposed to act, and literally bounces off the expander like a fish out of water. This has been my warning sign that perhaps I have been too “rigorous” in my activity level—so I try to avoid the flopping fish feeling, my new definition of "rigorous." Sorry, the little fish is beginning to flop, must opt out. Of course, it seems like it happens all the time. I'm helping Luke wash his hair in the tub, so he can keep his thumb dry. Flop. I'm folding laundry. Flop. I reach out and grab a cup that's just fallen off the table. Flop. I jog a tiny bit up the stairs. Flop, flop. Being able to regain full range of motion on my left side will feel good, but will take a while. Having to continue to refrain from lifting and exercising and getting worked up for another four weeks will be difficult, and I’m beginning to feel a bit like a puppy having to keep “quiet” and “lay low” after getting fixed—but I am happy, happy to do it. Happy, I tell you. Happy.

Before we head home, Jim and the boys and I make our way to the Franklin Park Zoo for an afternoon of disappointments. Luke's finger is throbbing, the zoo appears shabby, despite it being a bit a-buzz with winter clean-up, and it takes a while--of watching a lonely but lovely lion, licking himself clean before settling in for, what else, a nap; two pacing tigers; zebras running about in the distance; wildebeasts, lying in pairs on the ground (Stampede! In the gorge! Simba's down there!); obsessive compulsive kangaroos, wearing out the same path, over and over again--for us to find what we've come for: the indoor gorilla exhibit. Once there, it's quite wonderful, with the magnificent Silver Back terrorizing oogling school kids by sitting with his great back to them, pretending to ignore their taunts, and then, suddenly, in an explosive move, jumping at them against the glass, causing them to fall back and shriek and run away, hands covering mouths. Oh, such entertainment! Another highlight: the silverback daddy charges the female and little one, who scramble under giant tree roots for protection. The little one starts to nurse, clearly for comfort. As he suckles, he tries to look behind him to see what Mr. Unpredictable is doing. Poor little ape. Since there are ample angles for viewing, there is much to see, especially since the apes are so active and fun to watch. So much like us. And yet...while the exhibit seems fairly well-constructed and thought-out for zoo-bred gorillas, there is always a deep sadness about zoos that makes it difficult for me to enjoy them too much. So critical, but so undeniably inadequate. And such a reminder of our failure to protect what should be so dear to us. We should treat our cousins with more dignity.

It's late now. I'm tired. I'll write more another day. For now, G’night. Be well.

Friday, April 4, 2008

It’s never too late to become what you might have been. ~ George Eliot

The boys head off to their wilderness program first thing in the morning. The sun is out, quite happily, promising a warm, dry day, and predictably so, given that it was wintry yesterday, and since a pattern has been established this spring, with spring and winter taking turns (one day off, one day on), today is spring's turn to rise and shine and melt some snow. The boys will spend the day with their clans on a lovely spot (more like a vast array of unbelievably beautiful woodlands, meadows, and enchanted forests on many, many unspoiled acres, rather than an actual, ah, spot) by a roaring river in Dummerston, Vermont. They will track wild animals (much more fun than domesticated ones) in the snow, work on their shelters (all very environmentally friendly, green-chic, no-VOC), make fires (not yet pyros but getting close), and commune with the quiet, their friends, and the wintry spirit that still resides there, in the achingly tall white pines, the rush of river ice, and the thick snow that still blankets the forest floor.

My mother arrives to help me with my day--she helps me change the sheets on the boys' beds, drives me to my hair appointment (after which I feel about 5 pounds lighter, hurrah!), treats me to a delicious lunch--and my first real outing since the surgery--at one of our favorite stops, Gill's own Wagon Wheel, and takes me food shopping at our local food coop, where she pushes the cart around for me and carries my bags out to the car. It feels strange, not being able to do these things for myself. I know it's only temporary, but it is amazingly frustrating. And contained in the frustration is a good lesson for me: to surrender my stoicism and self-sufficiency, which has served me well over the years, and instead open myself up to receive this kind of help. Later, we return home for my second visit from the occupational therapist; she's been awaiting instructions and approval from my plastic surgeon, but has not yet heard back, and when she calls, the secretary (previously mentioned in past post as the woman who seems to spend all her time chatting on the phone with friends and talking to her work-buddy about how she made herself sick the previous weekend after drinking too much, nice) tells her that no, Dr. Pitts does not want me to stretch (this much, we know) and that anything else she wants to do will have to await approval. So, appointment cancelled. The OT is frustrated, to say the least, and so am I. I could really use the OT, given the soreness and immobility on my left side, and this means that this part of my follow-up care and treatment will be delayed. It seems neither she nor Sara, the visiting nurse, has had any luck with the secretary actually returning phone calls or faxes or passing on information from them to Dr. Pitts and vice-versa. It seems that perhaps Dr. Pitts should know about this, don't you think? Oh gee, this is beginning to sound like something I will have to talk to her about. She's such a good surgeon, and such a nice person, and she should have a secretary that better reflects her professionalism and warmth. And really, she should know about this disconnect: Yep, sorry to break it to you, but it's time to get a new secretary.

I see Dr. Pitts next Wednesday. I'll break it to her then. And I'd like to ask her why the expander seems so big, so big that it's digging into my rib cage, so big that it seems as if it is preparing me for a much larger breast than I had before. Is someone not telling me something? Did I sign my life away while in a narcotic haze at the hospital, and tell her I wanted bigger boobs after all? Just what happened after they put that twilight in the IV in pre-op? Hmmmmm...

I dare say I think I'd fall down with bigger boobs. No balance. Boom. I'd be pitching about all day long.

She did mention that I could have a lift on the right side to better match my new fake boobie on the left. A lift? A lift? I was insulted. I may have nursed my boys for six years but I don't need a damn lift. Do I? Ah, see, boob insecurities never die, they just sag a little.

It's a cold, soggy day. Winter's turn. We wake up to about an inch of wet snow on the ground. Luke opens his curtains and screams. We're all sick of this.

The boys and I make our way through the morning. We're all feeling a little glum, with no sun to warm our table. We wind our way through math, emotional outbursts, grammar, sibling rivalry, spelling, stomach grumbling, word roots, and lunch. When we're not watching March Madness, or Animal Planet (can you say Chimp Eden?), we've been watching a lot of cooking shows lately; Luke, in particular, has taken a real interest in the gourmet techniques he's watched, and it's sparked a willingness to cook, play with seasonings and sauces, roll out the chef lingo, and "plate" his food. Lunch, these days, has taken on new meanings. In fact, it's entered into our curriculum with a new flavor of competition and ambition, a Top Chef for the homeschooling set. And to great effect: lunches have been amazingly delicious and interesting. Much better than the usual leftovers.

Bellies full, we dig into our Inherited Traits project, using filters to explore connections between different traits within family sets. If your ring finger is longer than your pointer finger, does that mean you are more athletic? Do Damons really have thicker, crazier eyebrows? (yes) What does it really mean to be a ghost whisperer?

The nurse comes at 2. I like her so much. I will miss her when I'm healed up and my visits are done. And then, I'll have to go visit her, take her vitals, bring her chocolate. She's made a huge difference in my recovery. I am grateful.

Outside, in the afternoon, it's so soggy it feels like I'm in Scotland, or Wales, or England somewhere, and I've got my Wellies on and I'm taking the dog (a setter cross who happens to listen with much more attentiveness when I speak to her in a Scottish accent) over the moor to fetch tennis balls out of the woods. Daisy McMayhem! Stop yer barkin'! I threaten to write to the Dog Whisperer, with the same just-kidding tone that I use with the boys when I threaten them with Super Nanny. It works. The afternoon rain has washed away the morning's snow, and the ground sinks in and sprays wet with each step. I pocket two balls that I find amidst last fall's rotten, moldy, indistinguishable pears, and then, something red appears in the distance and catches my eye. At first I think that perhaps it is Daisy's Kong (or Bong, as my mother lovingly calls it), but then I see it has a long red handle and I do a little skip. The chuckit!! I've found the chuckit!! Hurrah, hurrah! We lost the chuckit in the fall, right before the first snow buried it and kept it hidden from us all winter long. The chuckit is a great invention; it's basically a really good arm--you tuck the tennis ball in its grip, wind up and heave-ho. The ball can go for miles. And when you've got a crazy Daisy girl like we do, and rotator cuffs like mine (shot to heck), and oh yes, a left side that's a bit compromised, it's a real savior. I spend the next twenty minutes tossing the ball all over the place; Daisy is ecstatic, and so am I: it's effortless, and doesn't put any strain on my sore left side, and finally, finally, I'm throwing like a girl no more. (actually, I don't know why I say that; I've still got a pretty good arm, mastectomy-induced girly sissy throw aside, and I am a girl, a girl under construction, but a girl nonetheless)

I do love how the snow melts and unearths all these treasures from the fall. Dead leaves and rotten pears aside. Tennis balls, golf balls, chuckits, dog toys, kid toys, and as ever, the lush bidding of life just pushing up through the surface--the crocuses, the buds and blossoms and beginnings of green, a return to energy, a plea for the surety of spring's healing warmth.

Tonight, I am feeling particularly grateful for the choices I've made since my diagnosis, and for the help I've had in making them. I know there will be more ahead, but I feel better equipped to deal with them than I ever imagined I would. Tomorrow, more cold raw wet is expected. Blimey. But for now, my blue light calls to me. Time to rest. I am so tired at the end of these days. My spirit waning, I am eager to fall into the depths of sleep, if it will have me. G'night.

Wednesday, April 2, 2008

Only when we are no longer afraid do we begin to live ~ Dorothy Thompson

If we had no winter, the spring would not be so pleasant; if we did not sometimes taste of adversity, prosperity would not be so welcome. ~ Anne Bradstreet


The day unfolded in spirals of billowing hope. The anticipatory, strangling fear that has weighed on me melted away like Monday’s wet snow, and ushered in a rapturous feeling of calm contentment in its place. Something opened up, released, and there it was: a lovely burgeoning buzz. And so much was contained in the moment, of being able to simply take in the moment, and receive what was being offered, that the day required a different pace altogether, a slowing down, so as to not miss a single gift.

It started with a telephone call. Dr. Specht, my breast surgeon, cheerfully spoke on the other end. It’s always good to hear from her; she is upbeat, warm, and informative. She had spoken with the pathologist, she had spoken with the oncologist, and everything looked “great.” These are things one needs to hear. She relayed specifics: the grade of the tumor was a 1, slow growing, an “80-year old’s tumor,” they called it, a good thing, clearly; the size was small, 1.7 cm, plus an additional 2 mm of residual invasive cancer in the margins that the mastectomy took away, cleared, obliterated, so margins are clear, clean, free of cancer, no need for radiation, yahoo!; nodes negative, even after special staining and pathology tricks, an especially great thing; and while Tamoxifen has been discussed as a clear inevitable focus of treatment, chemotherapy was not. “You‘re in the grey area as far as chemotherapy goes.” We talked about oncotype testing--more on that later. Dr. Paula Ryan, who came recommended by several people, is the medical oncologist I‘ll be working with. Though I have not yet met with her, I like her very much already; the fact that she is not absolutely pushing the chemo, and is open to the possibility that it may be more of a choice than I expected, thrills me. The prospect of pumping poison into my body has been a gnawing fear and constant worry on my mind; I felt immediately released. I have choices. I have choices. I have choices. I can do this.

I’ll meet with Dr. Specht and Dr. Paula Ryan, the medical oncologist, next Monday at Mass General. I’ll get the full pathology report, the dirt on my options, on what’s next: my medical map updated. On Wednesday, I’ll see Dr. Pitts, the plastic surgeon. I figure she’ll check me over, make sure everything is healing well, and fill up the expander with a little more saline. I don’t think it will take much longer before my left matches my right. It’s strange: when I lie down, I can feel the outline of the expander pressing into my chest., and can run my finger along its edges. On the inside edge, my ribs, which have always stuck out, seem to be digging into the expander, or vice versa. It is sore, and some fluid has collected there. I felt it acutely this morning at about 5, when the Advil had long ago worn off, and the pain has settled in after a long night in one position. My visiting nurse says to slow down, give myself more time to heal, stop trying to empty the dishwasher and fold laundry and do all the other upper-body intensive domestic stuff a home schooling mom of two has to do. And ice--must remember to sit every now and then and ice the sore, swollen spots. And as much as I’d like to get off the Advil altogether, she wants me to up my intake, back to one in the morning, and one in the evening. So much of this takes much getting used to--the letting go, the trust that someone will pick up the slack, the patience in dealing with resuming activity and feeling out a new normalcy in my routine and energy level. But slowly, surely, I feel more comfortable with the new terrain along my left chest that seems to change day by day, in color, shape, and texture. The purples have softened, the swelling in my pectoral muscle, while still inflamed and tight, has gone down a bit, and the tightness in my chest has lightened.

I’ve had help, some wonderful help. Every couple of days, delicious dinners arrive at our front door, courtesy of friends and neighbors. Thank you Danny, Gina, Kim, and Sarah and Jim. You have lightened my evening load so that I can tap into the healing of the day, blessings all. As well, beautiful flowers fill our house, thoughtfully chosen books and cards arrive daily, and my in-box has been stuffed with cyber hugs and greetings from friends and family all over. And yesterday morning, soon after the phone call from Dr. Specht, my friend Dan gave me a deeply relaxing Reiki session. At one point, I could feel a heaviness move from my shoulder into my arm and finally into my hand, where it rested for a few seconds before dissipating, leaving behind a wonderful lightness in my left side. Later in the afternoon, my friend Meg arrived to work her matrix repatterning magic on me, which brought about welcome respite and release. Surgery is a violent thing--life-saving, of course, and necessary, and wonderful in that way--but my body has felt so carved up, scarred, beaten up, and vulnerable to more attacks since the surgery that to actually get hands-on healing and reassurance to start the rebuilding process was amazing. Thank you Dan and Meg and Nancy and Sara for the reminding me that I am still whole, and for restoring some trust and comfort back to my left side.

And then there was the weather. No sun, but a soft, gentle, mild day that beckoned us outside. Just before dinner, we headed out for a walk. The evaporating winter chill hovered above the remaining snow in clouds of vaporous fog. We walked the familiar dirt road, soft underfoot, the melt-off rushing by in vernal streams flowing roadside that would soon be flush with frogs. We spied a few newly hatched bugs, and caught sight of skunk cabbage’s red cups of new growth. Robins hopped atop the muddied strawberry fields, yanking worms out of their winter naps. For some reason, the dog didn’t bark at her usual spot, where an old beaver pond opens up for swimming and splashing after rocks thrown from the road. Perhaps she was being respectful of the cat, who followed behind us slowly, paws gingerly padding around the muddy puddles and scattered pebbles, and every now and then, sprinting ahead to catch up.

Back at home, our lower lawn appears scarred by the engineering work of moles, who seemed to have spent the last few weeks digging tunnels through the upper most layer of soil, leaving behind tracks and trails and big splotchy mounds that sometimes form letters. We look for words amongst the scattered H’s and D’s, and wonder what the moles are trying to tell us. We guess, “Don’t send the cat out just yet. We’re having far too much fun.”


Today, the sun, and its pernicious pal, the whipping wind have returned, to bring in a howling, colder air and slow the stretch of spring. Amidst the rubble of the garden, the crocuses open mouths wide with purple tongues drinking in the sunshine . Everywhere, there are messy remnants of winter’s wrath: the lawn is littered with brightly colored chewed off bits of plastic Frisbee from Daisy’s incessant ice-bound boredom, tumbleweeds of sticks, dead leaves, and assorted oddities, like dog fur, wood shavings, string, the contents of a boy’s pocket, and the early spring uglies--dead, squashed down, sick-o looking grass, snow-crushed shrubs, and the unsightly remains of my own late November laziness, when I opted not to clip out all the dead iris greens, and left them, instead, to slowly rot out the winter days. Somewhere, far south of here, "April comes like an idiot, babbling and strewing flowers," as Edna St. Vincent Millay wrote, but not here, not in New England. April in New England is a constant reminder that yesterday’s optimism, like yesterday’s quiet warmth, can turn on a dime, that wet spring snow often follows warm melting days, andn vice versa, that you can't count on anything, and that given the circumstances, given my circumstances, my expectations are better left clipped, stunted, and swaddled in the usual cautionary tales and fables of possible destruction. It is true: my mobility has increased, the fear has lifted, I feel stronger, lighter, braver. And yet, this all takes time, this spring cleansing: the detox, the healing, the transformation. The old must go before the new can grow. There is much work to be done: raking the garden beds, clearing the canvas, redesigning the palette; carefully picking up the discarded pieces of old and dead strewn on the lawn, and doing away with; sweeping out winter‘s sediment and somberness to make room for new growth; planning and planting seeds of change and renewal; tending, reconstructing beauty, restoring love, balance, trust. And it will take time. Two steps forward, one step back.

And in the meantime, I’m thinking about coming up with a new name for my chest/breast, since there is no breast actually there, but an in-between work of art (that might be a stretch) in progress, that seems to change each and every day and will only be a temporary, transient part of me, given that the final product won’t be masterminded for a while. My friend Karen and I laughed about this for awhile today, and decided that it might get a bit out of hand. Suffice it to say that my left breast is no more, and was wrested away, my chest messed with, to say the least, lest the cancer got out of hand, but in so many ways, too, it’s been blessed. So…Wrest? Mest? Lest? Blest? Maybe just calling it little Mojo would be easier.

BTW, The 40-year old Virgin didn't go over so well the other night; after the first couple of F bombs were dropped (what was I expecting?), we switched over to The Holiday, a Jack Black, Cameron Diaz, Kate Winslet, Jude Law romantic comedy. Lovely, light, faintly funny escapism. Perfect, really. But it is time to reorder my Netflix queue. Time to dig out the heavy hitters: Mel Brooks, Monty Python, Will Ferrell, Freaks and Geeks. Send all suggestions for truly side-splitting funny flicks my way. And as always, thanks for listening.

It takes a lot of courage to release the familiar and seemingly secure, to embrace the new. But there is no real security in what is no longer meaningful. There is more security in the adventurous and exciting, for in movement there is life, and in change there is power.

~ Alan Cohen