"More cow bell!" That’s what I thought she said, anyway. I’m not sure why I had Will Ferrell on my mind, but when the MRI technician handed me the squeezy ball, I swear she said, “More cow bell!,” instead of “Here’s the call bell.”
Of course, ‘More cow bell!’ is just what the bizarre sounds that fill the MRI chamber need. As you may know, MRIs are pretty whacked--you lie down inside this chamber of sorts, stay absolutely still for what seems like an unbearable amount of time, and try to breathe through your claustrophobia, boredom, and anxiety while enduring the oddest assortment of hyper loud, obnoxious sounds that echo throughout the chamber and make your whole body buzz. During some MRIs, the coils beneath you gradually heat the chamber space around you, a chicken roasting in the oven. And sometimes, if you are lucky, the technicians are able to pipe music--of your choice--into the chamber, and again, if you are lucky, you may catch a few snippets of a song before the noise overwhelms you, and if you are really lucky, it will be a song that you not only recognize but one that you actually like, and you can fill your head with the song before the psychotic MRI cacophony overtakes you. Breast MRIs are, to borrow a phrase from Kriss Kross of long ago, not just pretty whacked, but are truly whickety whickety whacked. And with no Classic Soul hits to quell my anxiety, it was no wonder that, a few minutes into it, I was thinking of Will Ferrell, my mind clearly gravitating towards places that would bring me much needed comic relief.
The cab ride has taken about fifteen minutes longer than the morning’s ride; traffic swallowed us up and the cabbie honked his way through pedestrians and lackadaisical cars and finally dropped me off in front of Mass General about three minutes after my 2:30 appointment had started. I run through the revolving doors and find my way to Ellsworth, floor two, where I follow the usual labyrinthine hallways to the MRI waiting room--a surprisingly tiny spot in a huge hospital complex of buildings, courtyards, parking garages, and roving interns. Paperwork. Ten minutes wait, write in journal. Then, I am called in to change: everything off, except underwear, socks and shoes. Johnny gown, pants and robe. It's funny how completely fine you can feel until you put on hospital issue johnnies and suddenly, poof! you feel either like a sick-o or a psych-o, headed for the cuckoo's nest. I feel like both. In my haste, I goof and put the gown on open to the back, and later, must take everything off so it opens in front--I goof again and the string is suddenly knotted and takes me about 5 years to untie. Cram clothes, coat and bag into skinny junior high locker without the carved initials and Andy Gibb poster. I sit in the tiny hallway's only chair, waiting for my number to be called. Ten minutes. I walk ten feet and sit in huge, high chair, awaiting technician, another ten minutes, feeling like Lily Tomlin, with feet not touching floor. The tech arrives to put an IV in. “Nice veins,” he comments. Yep, I coulda been a junkie. I sit for another twenty minutes. No magazines, not even an old MRI Tech weekly, so I read every possible word within sight---not many, since my eyes are now over-40. The technicians are joking together in their little work space beyond the open curtain. They are carrying on. It is Friday afternoon. This is their happy hour. One of them wheels out an older woman, still on the MRI bed, and helps her into a wheelchair. The woman is smiling, laughing, making ridiculous conversation with the technician. Her hair is splayed in all different directions. She goes on and on, then realizes she still has her ear plugs in. Laughs. She is positively beaming.
Whatever she is on, I want.
She leaves with her daughter, and I am told that the techs will clean everything up and be back for me, in a flash. Not so much as in a flash than after a bilious mushroom cloud has filled the room with a hollow achy unease, the technician comes for me--the woman who had just minutes before been flirting with her co-workers. She turns her attention to me, making jokes, hahaha, isn’t this hilarious, aren’t we having fun, pulling me into their happy hour, a TGIF kind of thing that makes me think maybe I can’t trust her. At this point, I have no idea what I am in for, but since I have had four MRIs in the past month, I am feeling fairly confident that whatever the configuration, or the twist on the original, I can handle it. Then I see the table.
The MRI table has cut outs for my breasts, or my “girls,“ as the tech calls them. I have to laugh. It reminds me of the failed stereotactic biopsy attempt, and I immediately am aware of some anxiety beginning to chew at my insides. Now I understand why the gown must open in the front. Gotta get my girls out.
After ten minutes of getting “comfortable“--hooking up the IV, cramming in the ear plugs as deep as they’ll go, figuring out how best to position my neck while lying face down, and making sure my girls are where they should be--the procedure is explained to me, and I am inched into the chamber. A voice echoes through, “Can you hear me?” “yes…” A few strange knocking noises. And then, suddenly, a “Hi,’ from just outside the chamber, though I feel as if I’m underwater, and someone above me in a boat is calling down to me. The machine --much like a conveyor belt--moves me outside the chamber again, and I feel a hand on my back, “Hi, I’m sorry, but we have to put the right coils under you.” “The right coils?" I lift my head and open my eyes; it’s a different woman, who quickly explains to me the oversight: the other technician didn’t know she was still here, and that since she has just been trained in new protocol and equipment for the breast MRI, she wanted to make sure the correct coils were being used. So, unhook everything, up off the table, stand as they take apart old table and put together new one, sort of like big, foam puzzle pieces or toddler play mats and wedges, though, clearly, not as much fun. Climb back on, hook everything up, feel the machine convey me back into the chamber, where she hands me the squeezy, squishy round ball. “More cow bell,“ she says, and she is gone.
I muse over Will Ferrell for awhile, until I realize what she must have said. Something about the call bell. Call bell. Not nearly as much fun.
The male voice has returned, “Can you hear me?” “yep.” “We’re going to start now. This first one will last for just three minutes.” I shift my awareness to my breathing, and brace myself for the rhythmic noise that will soon fill the chamber, a sort of cocooned symphony hall. The first piece is a quirky performance piece, knocks here and there, growing louder and louder, faster and faster, and then, nothing. The voice announces the next piece, “This one is just 2 minutes.” Rocketing blasts. Horribly bad industrial electronic noise. I see Deiter dancing in black on Sprockets. With Will Ferrell. The next sounds just like the alarm that goes off catastrophically in the hatch on TV’s Lost, and for a few seconds, it is all I can do to restrain myself from scrambling the heck out of there, the sounds of “WHHHHAAAU SUCK WHHHHHAAA SUCK!“ reverberating through this mini-hatch, filling this magnetic chamber with a sort of maniacal mechanical laughter. It goes on like this, four 8-minute pieces, then a 7-minute one, then two more 8-minute piece. Each piece is slightly different, all interpretations on the industrial music theme, with lots of cow bell throughout. Sometimes Will Ferrell is banging his cow bell right in my ear, louder and louder. I can see his hairy belly spilling from his too small shirt. A bit of performance art inside my head. This is chamber music for the MRI set. I hope the BSO puts on a better performance for Dad and Mimi.
Several sets into it, the voice returns--I imagine a wizard of Oz behind the curtained window--to tell me that I am doing a good job. What I would do without some positive reinforcement, I do not know. Those animal instincts burn deep. I am more dog than human sometimes.
A bee is knocking on the door, knock knock buzz, buzz buzz knock, and then, the hive has emptied, and there are many bees, and they are angry, swarming the chamber, and then, silence. The voice :”Now your arm will feel cold as the dye moves through. This one will be five minutes, and then seven and then, you are done.” My arm never does feel cold. I worry if it’s working at all. I can’t imagine having to do this again. It has given me a whole new perspective mammography. But by the final minutes, the persistent buzzing has lodged into the background permanently, and I have managed some quiet time in my chamber, and when the voice declares the end of the mission, I emerge feeling victorious and with much relief that it's over, despite the red marks across my face and chest, the numbness in my hands, and the bright buzz in my head.
“Drop-dead gorgeous shots,” the technician says. “The images are amazing, so clear. You did a beautiful job.” “Thanks.” I am an MRI professional, after all. The technicians babble on, and I can tell they are feeling pretty stoked about the new equipment, the new protocol, this new way to help women. But their words cling together in a clump of gibberish, and I hear nothing. I put my shoes back on, and as I walk out the door towards the tiny changing room, I look back, briefly, to see a knot of technicians gathered around the MRI screens, where images of my girls float onscreen. For a brief second, I think I spy Christopher Walken directing a tiny troupe of Sprockets back inside the chamber for the next patient; Will Ferrell brings up the rear, cow bell in tow. Time for my girls and me to leave...
...if it were only that easy. I exit the MRI center and take a right down a sweeping hallway that bends a few times and ushers me into a completely unfamiliar space. I see exit signs everywhere, but I figure they might be a bit misleading--follow any trail of Exit signs and you're bound to exit the building at some point, even if it takes a few days. I spin to see a young looking intern-type coming up a set of stairs; he sees instantly that I am utterly lost (and, since I have two red marks down my face, who knows what else), and offers help, taking me down the stairs and into the hallway, where signs for the Front Lobby are clearly marked. I am grateful for his assistance--those small bits of kindness really do make worlds of difference. I realize, too, that I don't get regular practice making my way through big city hospitals, or streets, or crowds anymore, and I'm feeling a little spent. I sit on a bench, and watch the throngs rushing past, this way and that. It's Friday afternoon, a little after 5. I sit in this moment while time carries the crowds out into the streets.
February 29, 2008
Tuesday, March 4, 2008
Boston--Top Docs and Jelly fish
It felt great to be out of Gill for a bit, to trade in the dusty country roads and cows for the lush cityscapes of Boston. It's always good to get off the usual paths for a while, and I never really realize how much I tend to travel the same roads and routes over and over again, day in and day out, until, well, suddenly, I'm not on those roads traveling that route, and the road map changes.
It's been hard not knowing how this will go. The uncertainty of it all--the unsettledness--has unsettled me. Once my road map is clear, I know I’ll feel better, but for now, it feels as if I’ve been put on a road, and it's a road I've never been on before, and I don't recognize any of the landmarks. I try going very slowly at first, so much to take in, and it's new! But things start whipping by, time accelerates, as it does, and I find myself speeding, trying not to be out of control, trying to slow down so I can read the damn signs. Yield for homeschooling. Children crossing. But mostly, there are exit signs everywhere, and I’ve no idea which one to take. Turn right for another attempt at a breast-conserving surgery, with the promise of radiation down the road, and the prospect of mastectomy soon after; Turn left for a mastectomy, left again for reconstruction, or stay straight to opt out for now. Different people have lined up along the road to point me in different directions. Go this way! Take a right! Go left! I'm wondering if I can, simply, go back. But I know I can't, and frankly, I'd like to get off this road sooner than later, and return to the more bucolic roads that life has to offer, so it's a road map I must figure out.
My appointment with the breast surgeon at Mass General was slated for Friday, mid-morning, so Jim, the boys and I drove into the city Thursday night, stopping at Pappa Razzi in Concord for a birthday dinner of sorts for Dominick, who turned nine that day, before checking in to our hotel--the Marriott's Residence Inn at Tudor Wharf in Charlestown. Our trusty GPS--lovingly named Harold, despite its girlish voice, and passed down to us by my mother, who got a really nice one (read: all sorts of voices to choose from, though I'm still waiting for the George Clooney model) with her new Civic hybrid--navigated the ever-changing streets like a pro (or a more recent model, in any case), and we arrived at the quiet Charlestown hotel by bedtime.
Right on the water, close to the USS Constitution and Bunker Hill, the Marriott isn't huge, but offers a serene spot with views of the harbor and city lights, a great location, and an array of affordable suites to chose from. Ok, that's my plug. Onward ho.
We actually did like the hotel very much. And when you're zipping around the city, trying to cram in doctor visits and MRIs with family visits and kid-trips to the Museum of Science and Aquarium, and it's cold outside and you're not used to navigating the city streets and throngs of people, it's nice, so nice, to have a warm, peaceful spot to return to. I was grateful that it was quiet--no unruly guests (until the youth hockey players and their families arrived on Saturday morning, and whipped the hotel into a frenzy with their loud, brash antics, but that's another story) or obnoxious city sounds to keep us up. We opted for a suite, and with its spacious two bedrooms and two full baths, small kitchen and living room, we were glad of it. We could spread out, enjoy each other without fighting for footing, and get good sleep. And Jim could make coffee whenever he felt like it! The beds were comfortable--and this is important, because we've all spent nights on lumpy, horrible mattresses that have left our bodies aching and sore for weeks afterwards--and ample. With four of us, and the boys growing tall, we do need our space. And breakfast, a full breakfast, with choices from scrambled eggs to make-your-own-waffles to oatmeal, was included. Self-serve, easy peasy, ready in a jiff. As an added bonus, there was a small indoor pool (and whirlpool), where Dominick could swim and jump like a fish-monkey, across the hall from a mirrored exercise room, with weights and cardio equipment, where Luke could run on the treadmill while watching ESPN (bliss). The very first morning of our visit, we peeked in to see an older couple--probably in their late 70's or early 80's--working out. The woman, grinning in a headband and warm-up clothes, was walking the treadmill, while her guy gutted out the bicycle in his street clothes. Quite adorable.
I awoke Friday morning, eager to open the curtains and take in the view. We were surrounded by boats and water, and the water that morning reflected the rising sun with enough of a sparkle and flash to rouse me from my slumber and make me feel glad for the day, however apprehensive I was feeling. The boats appeared shrunk-wrapped for winter, but some sported doors (and some, wreaths on the doors) that entered into a hoop-house-like enclosure on the deck and cockpit, warmed by the winter sun, where, one would think, you could grow hothouse tomatoes, salad greens, and marijuana plants (medicinal, of course) quite easily. It was fun to imagine what it would be like to live on a boat through a Boston winter, and we spied people stirring from within, and a few small lights on at night.
After breakfast, my father and his fiance', Mimi arrived to take the boys off to the USS Constitution museum while Jim and I met with Dr. Michelle Specht, the breast surgeon at Mass General. There were clues at this point that made for an inauspicious start to the day, and that I couldn't shake. I realized, about an hour before my appointment, that I had forgotten, yes, forgotten, to pick up my mammo films and written reports from Dr. Fox's office the day before, things I was supposed to have brought with me to Dr. Specht's office. I couldn't believe it. What the heck was wrong with me? Where was my head? Was I acting out some deep-seated desire to have the surgery done at home and sabotage, passive-aggressively, my chances of having it done in Boston? Regardless of the deep hidden meanings (DHM, for short) behind my negligence, I felt like a total idiot. I asked Jim to call Dr. Fox's office, and then Dr. Specht's. Reports could be faxed, the pathology slides had already been sent, but there was nothing we could do about the mammo films. "Not a problem," I was told. Oy.
The cab ride over was short, but smokey, despite signs all over the cab that proclaimed it would be a smoke-free ride. Oh well. Breathing all that second hand smoke just made me feel like I was back in Greenfield, alas. We found the Yang Building fairly easily, and maneuvered around the construction to enter through swinging glass doors. There was quite a line of people waiting for the elevators, which all seemed to be full. Next time, I reminded myself, take the stairs. Up at the Avon Breast Center, we checked in, and I headed into the bathroom to de-tea myself, but saw that there was pee all over the seat. Hmmm. By the time I had quickly cleaned it up, gone myself, and washed my hands (washed my hands, done with such intention these days, if I could just get the kids to do it with as much intention), I could hear a woman calling my name, so opened the door and followed her down the hall into a tiny examination room. This was the part I hated most: having to own up to forgetting (forgetting!) my forms (felt like the Clampdown all over again, bad dog, bad dog). Had they received the fax? "No, it's not here." Had we been given the correct fax number? "No, it went to the wrong place." So, Jim--who has an uncanny ability to remain calm and detached when my head is about to spin off my body and my heart jump out of my chest--calmly called Dr. Fox's office to have them re-fax the reports, and a few minutes later, the nurse came in, smiling, to let us know that all had been received. Exhale.
I spent about five minutes filling out a questionnaire to assess my cancer risk; completed on a portable electronic clipboard, it asked me questions about family medical history, whether I smoke (does occasional pub-smoking in college really count? I mean, what if you've never even bought a pack of cigarettes before?), how much I drink (again, just what are we talking about here? drinking beer out of a boot during my rugby days, or the handful of gin and tonics that I enjoy every year?), yadda yadda. You realize quickly just how flawed these risk assessments could be.
Just when I thought it couldn't get any worse, it didn't; in fact, when Dr. Specht showed up, smiling warmly, I felt instantly at ease, and things got much, much better. She was personable, kind, and every bit of the breast cancer pro that has been promised. She was also positive, upbeat, and generous with her time. She spent a good chunk of the hour teaching us about breast cancer--drawing pictures, answering our questions, mapping out the process. She presented everything at a very high level; I was quickly beginning to understand what all the fuss was about. She understood and shared my indecision about whether to have a lumpectomy, or re-incision, or a mastectomy, and ordered up a breast MRI to help make the decision clearer. The MRI, done with contrast dye injected into the blood flow intravenously, would help her determine how much cancerous tissue remained in the left breast, and whether or not any existed in the right breast, by showing increased blood flow to the areas where cancerous cells, which apparently need lots of blood, hang out. Typically, she said she would recommend a mastectomy over a lumpectomy if she had to remove more than a quarter of the overall breast tissue in order to secure clear margins, ie, no cancer left behind (not to be confused with the highly flawed No Child Left Behind act). After my exam, she thought that I could still do a lumpectomy if I wanted to, but wanted me to realize that there was still a good chance that she would not be able to get all the cancer out, and I would still need a mastectomy at some point. The MRI would possibly provide more information to make the best possible decision, but ultimately, she reminded me, the decision was mine. She also recommended that I have either surgery done at Newton-Wellesley Hospital, where she spends Mondays working in the OR, given its proximity to Gill (vs. MGH) and its abundance of private rooms.
Very early into our consultation, I knew that I wanted Dr. Specht to do my surgery. And I had been hoping that this would happen, that my gut would let me know, one way or the other. Dr. Fox is wonderful, and clearly, a gifted surgeon. But Dr. Specht, likewise gifted, is a woman, which under the circumstances, matters to me. She is, like Dr. Fox, immensely likable and well-dispositioned (I'm not even sure that is a word, but you get my drift) to be my doctor, but has more resources and experience at her disposal. And so my decision was made. One down, with more to go. As to which surgery I would chose, I still was not clear, and was hoping the MRI would offer some ideas.
Though I had to return to the hospital in just a couple of hours to have the MRI done, the cab ride back felt far breezier than it had on the way over, and I felt lighter, despite having more information to digest and process. Later, I told myself. There would be time for that later. For the time being, I was enjoying the cab ride, this one truly smoke-free and unfettered. It felt great to be riding a cab amidst a city scape, and not driving past the same farms, ice blossom covered trees, and mud spattered snow banks. Don't get me wrong--Gill is lovely, and the recent snow has draped a crystalline beauty atop its trees and barns that make it a virtual winter wonderland, a postcard--and yet, when it's all you've seen for months and months, it loses a bit of its ethereal quality and starts to fade, tire, even annoy. So--a break to the city, with its own enchanted juxtaposition of the surreal and the real, the futuristic and the archaic, can feel restorative, and edifying.
Little did I know what the breast MRI would have in store for me, nor how completely and utterly exhausted I would feel when I got home on Saturday night. But despite all of that, it was a good trip. We were able to take in the Aquarium on Saturday, where the jelly fishes completely wowed us with their exquisite beauty and colorful dances. When I saw the big tank in the center of the Aquarium, I was reminded of how I used to nurse Luke there when he was a baby. We'd come in to the city to see the harbor seals and other delights and I'd tuck myself in one of the windows and nurse him as the sharks and turtles swam on by. I suppose there's a part of me that is grieving for all that astoundingly wonderful--and I mean that--nursing time with Luke and Dominick, not just because they are growing up so fast, but also because I have to prepare myself for saying goodbye to such a big (though physically and literally quite small) part of myself and my life as a mother. Just how does one say good-bye to a breast? Take lots of pictures? Throw a party? Create a book of nursing memories? A book of nah-nahs. Num-nums. (I love all the different names that babies, and especially toddlers, come up with for their mother's breasts.) Yep, I just might have to do that.
It's been hard not knowing how this will go. The uncertainty of it all--the unsettledness--has unsettled me. Once my road map is clear, I know I’ll feel better, but for now, it feels as if I’ve been put on a road, and it's a road I've never been on before, and I don't recognize any of the landmarks. I try going very slowly at first, so much to take in, and it's new! But things start whipping by, time accelerates, as it does, and I find myself speeding, trying not to be out of control, trying to slow down so I can read the damn signs. Yield for homeschooling. Children crossing. But mostly, there are exit signs everywhere, and I’ve no idea which one to take. Turn right for another attempt at a breast-conserving surgery, with the promise of radiation down the road, and the prospect of mastectomy soon after; Turn left for a mastectomy, left again for reconstruction, or stay straight to opt out for now. Different people have lined up along the road to point me in different directions. Go this way! Take a right! Go left! I'm wondering if I can, simply, go back. But I know I can't, and frankly, I'd like to get off this road sooner than later, and return to the more bucolic roads that life has to offer, so it's a road map I must figure out.
My appointment with the breast surgeon at Mass General was slated for Friday, mid-morning, so Jim, the boys and I drove into the city Thursday night, stopping at Pappa Razzi in Concord for a birthday dinner of sorts for Dominick, who turned nine that day, before checking in to our hotel--the Marriott's Residence Inn at Tudor Wharf in Charlestown. Our trusty GPS--lovingly named Harold, despite its girlish voice, and passed down to us by my mother, who got a really nice one (read: all sorts of voices to choose from, though I'm still waiting for the George Clooney model) with her new Civic hybrid--navigated the ever-changing streets like a pro (or a more recent model, in any case), and we arrived at the quiet Charlestown hotel by bedtime.
Right on the water, close to the USS Constitution and Bunker Hill, the Marriott isn't huge, but offers a serene spot with views of the harbor and city lights, a great location, and an array of affordable suites to chose from. Ok, that's my plug. Onward ho.
We actually did like the hotel very much. And when you're zipping around the city, trying to cram in doctor visits and MRIs with family visits and kid-trips to the Museum of Science and Aquarium, and it's cold outside and you're not used to navigating the city streets and throngs of people, it's nice, so nice, to have a warm, peaceful spot to return to. I was grateful that it was quiet--no unruly guests (until the youth hockey players and their families arrived on Saturday morning, and whipped the hotel into a frenzy with their loud, brash antics, but that's another story) or obnoxious city sounds to keep us up. We opted for a suite, and with its spacious two bedrooms and two full baths, small kitchen and living room, we were glad of it. We could spread out, enjoy each other without fighting for footing, and get good sleep. And Jim could make coffee whenever he felt like it! The beds were comfortable--and this is important, because we've all spent nights on lumpy, horrible mattresses that have left our bodies aching and sore for weeks afterwards--and ample. With four of us, and the boys growing tall, we do need our space. And breakfast, a full breakfast, with choices from scrambled eggs to make-your-own-waffles to oatmeal, was included. Self-serve, easy peasy, ready in a jiff. As an added bonus, there was a small indoor pool (and whirlpool), where Dominick could swim and jump like a fish-monkey, across the hall from a mirrored exercise room, with weights and cardio equipment, where Luke could run on the treadmill while watching ESPN (bliss). The very first morning of our visit, we peeked in to see an older couple--probably in their late 70's or early 80's--working out. The woman, grinning in a headband and warm-up clothes, was walking the treadmill, while her guy gutted out the bicycle in his street clothes. Quite adorable.
I awoke Friday morning, eager to open the curtains and take in the view. We were surrounded by boats and water, and the water that morning reflected the rising sun with enough of a sparkle and flash to rouse me from my slumber and make me feel glad for the day, however apprehensive I was feeling. The boats appeared shrunk-wrapped for winter, but some sported doors (and some, wreaths on the doors) that entered into a hoop-house-like enclosure on the deck and cockpit, warmed by the winter sun, where, one would think, you could grow hothouse tomatoes, salad greens, and marijuana plants (medicinal, of course) quite easily. It was fun to imagine what it would be like to live on a boat through a Boston winter, and we spied people stirring from within, and a few small lights on at night.
After breakfast, my father and his fiance', Mimi arrived to take the boys off to the USS Constitution museum while Jim and I met with Dr. Michelle Specht, the breast surgeon at Mass General. There were clues at this point that made for an inauspicious start to the day, and that I couldn't shake. I realized, about an hour before my appointment, that I had forgotten, yes, forgotten, to pick up my mammo films and written reports from Dr. Fox's office the day before, things I was supposed to have brought with me to Dr. Specht's office. I couldn't believe it. What the heck was wrong with me? Where was my head? Was I acting out some deep-seated desire to have the surgery done at home and sabotage, passive-aggressively, my chances of having it done in Boston? Regardless of the deep hidden meanings (DHM, for short) behind my negligence, I felt like a total idiot. I asked Jim to call Dr. Fox's office, and then Dr. Specht's. Reports could be faxed, the pathology slides had already been sent, but there was nothing we could do about the mammo films. "Not a problem," I was told. Oy.
The cab ride over was short, but smokey, despite signs all over the cab that proclaimed it would be a smoke-free ride. Oh well. Breathing all that second hand smoke just made me feel like I was back in Greenfield, alas. We found the Yang Building fairly easily, and maneuvered around the construction to enter through swinging glass doors. There was quite a line of people waiting for the elevators, which all seemed to be full. Next time, I reminded myself, take the stairs. Up at the Avon Breast Center, we checked in, and I headed into the bathroom to de-tea myself, but saw that there was pee all over the seat. Hmmm. By the time I had quickly cleaned it up, gone myself, and washed my hands (washed my hands, done with such intention these days, if I could just get the kids to do it with as much intention), I could hear a woman calling my name, so opened the door and followed her down the hall into a tiny examination room. This was the part I hated most: having to own up to forgetting (forgetting!) my forms (felt like the Clampdown all over again, bad dog, bad dog). Had they received the fax? "No, it's not here." Had we been given the correct fax number? "No, it went to the wrong place." So, Jim--who has an uncanny ability to remain calm and detached when my head is about to spin off my body and my heart jump out of my chest--calmly called Dr. Fox's office to have them re-fax the reports, and a few minutes later, the nurse came in, smiling, to let us know that all had been received. Exhale.
I spent about five minutes filling out a questionnaire to assess my cancer risk; completed on a portable electronic clipboard, it asked me questions about family medical history, whether I smoke (does occasional pub-smoking in college really count? I mean, what if you've never even bought a pack of cigarettes before?), how much I drink (again, just what are we talking about here? drinking beer out of a boot during my rugby days, or the handful of gin and tonics that I enjoy every year?), yadda yadda. You realize quickly just how flawed these risk assessments could be.
Just when I thought it couldn't get any worse, it didn't; in fact, when Dr. Specht showed up, smiling warmly, I felt instantly at ease, and things got much, much better. She was personable, kind, and every bit of the breast cancer pro that has been promised. She was also positive, upbeat, and generous with her time. She spent a good chunk of the hour teaching us about breast cancer--drawing pictures, answering our questions, mapping out the process. She presented everything at a very high level; I was quickly beginning to understand what all the fuss was about. She understood and shared my indecision about whether to have a lumpectomy, or re-incision, or a mastectomy, and ordered up a breast MRI to help make the decision clearer. The MRI, done with contrast dye injected into the blood flow intravenously, would help her determine how much cancerous tissue remained in the left breast, and whether or not any existed in the right breast, by showing increased blood flow to the areas where cancerous cells, which apparently need lots of blood, hang out. Typically, she said she would recommend a mastectomy over a lumpectomy if she had to remove more than a quarter of the overall breast tissue in order to secure clear margins, ie, no cancer left behind (not to be confused with the highly flawed No Child Left Behind act). After my exam, she thought that I could still do a lumpectomy if I wanted to, but wanted me to realize that there was still a good chance that she would not be able to get all the cancer out, and I would still need a mastectomy at some point. The MRI would possibly provide more information to make the best possible decision, but ultimately, she reminded me, the decision was mine. She also recommended that I have either surgery done at Newton-Wellesley Hospital, where she spends Mondays working in the OR, given its proximity to Gill (vs. MGH) and its abundance of private rooms.
Very early into our consultation, I knew that I wanted Dr. Specht to do my surgery. And I had been hoping that this would happen, that my gut would let me know, one way or the other. Dr. Fox is wonderful, and clearly, a gifted surgeon. But Dr. Specht, likewise gifted, is a woman, which under the circumstances, matters to me. She is, like Dr. Fox, immensely likable and well-dispositioned (I'm not even sure that is a word, but you get my drift) to be my doctor, but has more resources and experience at her disposal. And so my decision was made. One down, with more to go. As to which surgery I would chose, I still was not clear, and was hoping the MRI would offer some ideas.
Though I had to return to the hospital in just a couple of hours to have the MRI done, the cab ride back felt far breezier than it had on the way over, and I felt lighter, despite having more information to digest and process. Later, I told myself. There would be time for that later. For the time being, I was enjoying the cab ride, this one truly smoke-free and unfettered. It felt great to be riding a cab amidst a city scape, and not driving past the same farms, ice blossom covered trees, and mud spattered snow banks. Don't get me wrong--Gill is lovely, and the recent snow has draped a crystalline beauty atop its trees and barns that make it a virtual winter wonderland, a postcard--and yet, when it's all you've seen for months and months, it loses a bit of its ethereal quality and starts to fade, tire, even annoy. So--a break to the city, with its own enchanted juxtaposition of the surreal and the real, the futuristic and the archaic, can feel restorative, and edifying.
Little did I know what the breast MRI would have in store for me, nor how completely and utterly exhausted I would feel when I got home on Saturday night. But despite all of that, it was a good trip. We were able to take in the Aquarium on Saturday, where the jelly fishes completely wowed us with their exquisite beauty and colorful dances. When I saw the big tank in the center of the Aquarium, I was reminded of how I used to nurse Luke there when he was a baby. We'd come in to the city to see the harbor seals and other delights and I'd tuck myself in one of the windows and nurse him as the sharks and turtles swam on by. I suppose there's a part of me that is grieving for all that astoundingly wonderful--and I mean that--nursing time with Luke and Dominick, not just because they are growing up so fast, but also because I have to prepare myself for saying goodbye to such a big (though physically and literally quite small) part of myself and my life as a mother. Just how does one say good-bye to a breast? Take lots of pictures? Throw a party? Create a book of nursing memories? A book of nah-nahs. Num-nums. (I love all the different names that babies, and especially toddlers, come up with for their mother's breasts.) Yep, I just might have to do that.
Sign the Petition! Breast Cancer Protection Act
The Breast Cancer Protection Act is a much-needed legislative action to ensure that women have adequate recovery time in hosptials after mastectomies. It's easy to sign the petition--just click on the link below and fill in your contact info. The bit below reminds me of when I was discharged from the hospital about 22 hours after giving birth to Luke--under a new set of rules put forth by, who else?, the insurance companies, who were insistent that women be sent home within 24 hours of labor and delivery, regardless of how they were feeling, faring, what their doctors felt, or what--or who--was waiting for them at home. A guinea pig of sorts, I was one of the first at this particular hospital, and it did indeed feel strange to be "kicked out" after such a short time of "recovery"--though one could hardly call being shifted from room to room after spending the last 36 hours in labor "recovery." Of course, in those days, giving birth for me was a big heroic feat, and I had prepared myself for being superhuman about it--my birthing plan firmly proclaiming my intentions for a drug-free l & d--and so even when my plan failed to hold up under the weight of the usual unforseen, unavoidable circumstances, I was still very much interested in trying to recapture my superhero status, and so gladly, even proudly, went home, utterly exhausted, sore and deliriously happy, to get the rest--and care (our dog Zephyr just about bathed me with his tongue as soon as I entered our apartment)--I needed.
It's a shame, though, that insurance companies are still allowed to make these kind of decisions--in spite of doctors--and patients--knowing best.
From a nurse:
I'll never forget the look in my patients eyes when I had to tell them they had to go home with the drains, new exercises and no breast. I remember begging the Doctors to keep these women in the hospital longer, only to hear that they would, but their hands were tied by the insurance companies. So there I sat with my patients, giving them the instructions they needed to take care of themselves, knowing full well they didn't grasp half of what I was saying, because the glazed, hopeless, frightened look spoke louder than the quiet 'Thank You they muttered.
A mastectomy is when a woman's breast is removed in order to remove cancerous breast cells/tissue. If you know anyone who has had a Mastectomy, you may know that there is a lot of discomfort and pain afterwards. Insurance companies are trying to make mastectomies an
outpatient procedure. Let's give women the chance to recover properly in the hospital for 2 days after surgery.It takes 2 seconds to do this and is very important .. Please take the time and do it really quick!
Please send this to everyone in your address book.
If there was ever a time when our voices and choices should be heard, this is one of those times.
If you're receiving this, it's because I think you will take the 30 seconds to go to vote on this issue and send it on to others. You know who will do the same.
There's a bill called the Breast Cancer Patient Protection Act which will require Insurance Companies to cover a minimum 48-hour hospital stay for patients undergoing a mastectomy. It's about eliminating the 'drive-through mastectomy' where women are forced to go home just a few hours after surgery, against the wishes of their doctor, still groggy from anesthesia and sometimes with drainage tubes still attached.Lifetime Television has put this bill on their Web page with a petition drive to show your support. Last y ear over half the House signed on. PLEASE!! Sign the petition by clicking on the Web site below. You need not give more than your name and zip code number. http://www.lifetimetv.com/breastcancer/petition/signpetition.php This takes about 2 seconds. PLEASE PASS THIS ON to your friends and family, and on behalf of all women, THANKS.
Thanks to Cynthia for sending this my way.
It's a shame, though, that insurance companies are still allowed to make these kind of decisions--in spite of doctors--and patients--knowing best.
From a nurse:
I'll never forget the look in my patients eyes when I had to tell them they had to go home with the drains, new exercises and no breast. I remember begging the Doctors to keep these women in the hospital longer, only to hear that they would, but their hands were tied by the insurance companies. So there I sat with my patients, giving them the instructions they needed to take care of themselves, knowing full well they didn't grasp half of what I was saying, because the glazed, hopeless, frightened look spoke louder than the quiet 'Thank You they muttered.
A mastectomy is when a woman's breast is removed in order to remove cancerous breast cells/tissue. If you know anyone who has had a Mastectomy, you may know that there is a lot of discomfort and pain afterwards. Insurance companies are trying to make mastectomies an
outpatient procedure. Let's give women the chance to recover properly in the hospital for 2 days after surgery.It takes 2 seconds to do this and is very important .. Please take the time and do it really quick!
Please send this to everyone in your address book.
If there was ever a time when our voices and choices should be heard, this is one of those times.
If you're receiving this, it's because I think you will take the 30 seconds to go to vote on this issue and send it on to others. You know who will do the same.
There's a bill called the Breast Cancer Patient Protection Act which will require Insurance Companies to cover a minimum 48-hour hospital stay for patients undergoing a mastectomy. It's about eliminating the 'drive-through mastectomy' where women are forced to go home just a few hours after surgery, against the wishes of their doctor, still groggy from anesthesia and sometimes with drainage tubes still attached.Lifetime Television has put this bill on their Web page with a petition drive to show your support. Last y ear over half the House signed on. PLEASE!! Sign the petition by clicking on the Web site below. You need not give more than your name and zip code number. http://www.lifetimetv.com/breastcancer/petition/signpetition.php This takes about 2 seconds. PLEASE PASS THIS ON to your friends and family, and on behalf of all women, THANKS.
Thanks to Cynthia for sending this my way.
Experience is what you get when you don't get what you want
Check out the videos on the video bars to the right--Dr. Randy Pausch giving his final lecture on Oprah, and an amazing story about a Cat, Rat, and a Dog--and you'll think about things a little differently today. Thanks to Clinton and Janice for sending these my way.
Monday, March 3, 2008
Light and Dark
Like all good worriers, I've taken my breast cancer to the worst possible places, imagined horrible scenarios, and come back round again. I've danced out of my fear, back into the light, where every moment breathes its own life into me, and then fallen back into the shadows, where at times, I'm not sure I can find my way out. But the sun rises as surely as it sets, moving through the shadows and illuminating darkness--fears, anxieties, anger. Another day, another cycle of hope, fear, regret.
I haven't felt rage--just a blanketing, familiar sadness, and some blasts of terror. Things have felt unsettled, which I don't like, and these uncertainties have added to my anxiety. But no rage. Yet.
I was reminding the boys the other day that all of us are made of light and dark, reflecting the very same in the world around us, and that while we shine our light on the dark spaces, we must stay in the light. So, while contemplating Death, turning it over and about like a smooth stone in my hand, eyeballing it, and putting it aside, for later, I hold on to Hope, the sustaining warmth of the afternoon March sun, the reassurance from a friend, those little nuggets of joy waiting to be discovered in each and every moment.
The following story came to me from a friend whose son brought it home to share after hearing it round a wilderness program fire. She copied this version off http://lpintop.tripod.com/laurasinspirationalpages/id17.html
Two Wolves
An old Cherokee chief is teaching his grandson about life:
"A fight is going on inside me," he said to the boy. "It is a terrible fight and it is between two wolves.
"One is evil - he is anger, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, self-doubt, and ego.
"The other is good - he is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion, and faith.
"This same fight is going on inside you - and inside every other person, too."
The grandson thought about it for a minute and then asked his grandfather, "Which wolf will win?"
The old chief simply replied, "The one you feed."
Thanks to Valerie and Aji for sending this story my way.
I haven't felt rage--just a blanketing, familiar sadness, and some blasts of terror. Things have felt unsettled, which I don't like, and these uncertainties have added to my anxiety. But no rage. Yet.
I was reminding the boys the other day that all of us are made of light and dark, reflecting the very same in the world around us, and that while we shine our light on the dark spaces, we must stay in the light. So, while contemplating Death, turning it over and about like a smooth stone in my hand, eyeballing it, and putting it aside, for later, I hold on to Hope, the sustaining warmth of the afternoon March sun, the reassurance from a friend, those little nuggets of joy waiting to be discovered in each and every moment.
The following story came to me from a friend whose son brought it home to share after hearing it round a wilderness program fire. She copied this version off http://lpintop.tripod.com/laurasinspirationalpages/id17.html
Two Wolves
An old Cherokee chief is teaching his grandson about life:
"A fight is going on inside me," he said to the boy. "It is a terrible fight and it is between two wolves.
"One is evil - he is anger, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, self-doubt, and ego.
"The other is good - he is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion, and faith.
"This same fight is going on inside you - and inside every other person, too."
The grandson thought about it for a minute and then asked his grandfather, "Which wolf will win?"
The old chief simply replied, "The one you feed."
Thanks to Valerie and Aji for sending this story my way.
Filling in the Gaps~Update
Here's the next update, sent out to family and friends not long after I received a full report from Dr. Fox, the local general surgeon who performed by biopsy. I was fairly numb for a few days afterwards, trying hard to process so much information, so much reality that my head felt ready to explode. I kept thinking it must be a bad dream, and that I would awake soon. But over time, the shock wears off, and the laundry has to get done--you know how it is! Life goes on...
Dear friends and family,
I have been truly moved by your emails—filled with love and support and offers of help. Thank you so much. I am so grateful for all of you, and really would not have gotten through these last weeks without your cyber blasts of love. I hope to be able to get back to each and every one of you, too, so bear with me while I try to get caught up.
In the meantime, I promised I would keep you updated, so here we go. (For those of you who want the full scoop, let me know and I can email you a PDF version of it.)
I received the full pathology report yesterday, and I have needed to take some time digesting, processing, and letting the initial shock wear off before writing and being able to present it to you. Of course I knew going in that I had breast cancer, but hearing the details of the report felt quite different, and made it seem all the more real. I have infiltrating ductal carcinoma in-situ, so it is invasive, which means chemo after surgery for awhile. The report did offer up some positives, though, as my old friend Rebecca Liu, an ob/gyn oncologist in Mich, pointed out:
some good things to focus on:
grade 1 tumor (grade 1 = slowest growing, grade 2= medium, grade 3= fast growing)
estrogen receptor and progesterone receptor positive (ER/PR +): better prognosis Her2neu negative: better prognosis.
If you had to pick, you got the good kind I guess.
At this point, I’m all about “good things to focus on.” It’s really the only thing to do. Otherwise, I would surely and spontaneously combust. There are still things we don’t know—the staging, whether it has spread, etc. More tests and surgeries are needed. My next steps include trying to get a second opinion from a top breast cancer doc in Boston, making decisions as to what kind of surgery I think I want, and having the surgery within the next four weeks. I’m still trying to figure out if breast-saving surgery (lumpectomy with a sentinel lymph node biopsy—to see if cancer has spread) will give me the peace of mind I know I will need once this is over and done with. My surgeon is more comfortable with a mastectomy—he said he was done to the muscle during the first biopsy, and since there’s still cancer left (present at margins), he’d have to go deeper, and take more tissue out to be sure, and well, would it be worth saving? And would I be at a higher risk of re-occurrence? Apparently yes, I would, but with the same end results. And if I go with a mastectomy, would I go with reconstruction? And which kind? There are some horror stories out there about the kind of healing that is needed after a mastectomy with reconstruction. Would I need to do it right away? Would I want to think about it?
The other major decisions I am grappling with are trying to figure out who to see in Boston, and whether to have my surgery done there or closer to home. I have received so many great recs from so many of you—and I thank you for them. It has given me a place to start, which is enormously helpful. I have contacted Sridhar Ramaswamy, a Williams classmate who is a cancer researcher/oncologist at MGH/Harvard, with hopes that he can help guide me to the right team of people. Presently, I am due to be in Boston next Friday for an appointment with a breast surgeon at MGH, a Dr. Michelle Specht. Dominick’s birthday is the day before, so we may spend the night and try to do something fun for a change in the big city.
One of the most difficult parts of this is trying to figure out what this means for my domestic landscape—which is certain to change. I know I’m going to need a lot more help than I have ever needed--I am currently homeschooling the boys, and loving it, and wanting to continue, but know there will be days when I cannot teach them or even guide their sweet independent work without help. Therefore, I am trying to prepare by soliciting guest lecturers and substitute teachers. The boys are holding up fairly well, but are filled with terror. When I first got my diagnosis, it was Dominick who took my face in his hands, and said, “Mom, look at me. Look into my eyes. You’re going to be okay. You’re going to okay.” He seems to know exactly when I need a hug, or a word of reassurance. And yet, he’s not even nine—and needs to vent, process his own fears, let it all hang out. Last night I was able to talk him into spilling it all, and we cried together for a long time, his little declarations of love and fear nearly breaking me in two. Luke, too, is reeling, and fighting it in his own 13-year old way. He was incredibly grown-up when I told him the diagnosis, telling me he'd be be "there for me" and help me in any way he could. But it's tough on him, on both of them, trying to get their heads around all of this--this dark, scary stuff that has floated on the periphery of our worlds for so long, that has now invaded, interrupted, changed our lives for good. So, I ushered Luke into my room last night, too, to talk, acknowledge how shitty this was for not just me but for him and Dominick and Jim, too, encourage him to try not to hold it all in, to be brave and let it out—and he did, so painfully afraid that I might die, that I might not be there for him. I’m doing my best to be strong for them. They are my everything. I so desperately want to be there while they grow up, the thought of even missing some of it is harrowing. Can’t go there.
One day at a time. Sometimes it’s almost too much to think about beyond that, but I have to, and my surgeon and I discussed what the year ahead might look like. “The year?,” I asked, in disbelief. “Yes,” the surgeon said, “this is going to be a time for you to focus on getting better and not a whole lot more.” It will be a time of receiving big, bone-crushing lessons, peeling back the layers, getting to know myself better and loving what I find, shining the light on all the dark spaces inside and out, holding on to what is dear and letting go of what no longer nourishes, finding the laughter & joy amidst the tears & pain, and trusting in this life. I can talk big, but truth is I am still trying to peel myself off the pavement—I feel like a cartoon character that has been hit by a truck and is waiting for the animators to restore my luster, fill me out—but I do not feel whole. I told the doctor that I felt like, in a really strange way, I was planning my wedding—something big and momentous that will change my life, something rife with decision making and planning, not to mention that my mother has been completely galvanized into action, into researching the top docs, making her lists, assembling care. I’m just trying to grasp at the reality of it all--it seems far too big for me, and in a sense, I am trying to keep it at bay, while at the same time make some really tough decisions.
I mused not long ago that my breasts—having spent their lives feeling self-consciously undersized, being ridiculed and maligned, unsuccessfully trying to fit into a bra, any bra, and hearing, again and again, “No, they don’t make 38As,” and then enjoying a renaissance as the favorite neighborhood Dairy Queen, pumping out 6 years worth of fresh milk for two quick-growing baby boys, being squeezed and adored by nursing toddlers, and then shrinking shamelessly back to age 12-size fresh sprouts—should really be enjoying a lovely retirement by now. Oh well. It is what it is. I was restless for change. Here it is.
I do wish you all lived next door, and could come over and have tea. I miss you, and hate that so many of you are so far away. But I am so happy you are there at all, and do hope to see you sometime soon.
There is much to look forward to. I’ve told the boys that we will plan a great trip someplace fantastic this late spring or summer, when I’m fairly well healed up and have a break in between chemo. I am sad to have to miss my father’s wedding celebration in Yosemite this April, but am hopeful that I can still make my 25th Exeter reunion in late April—and if there’s any way in hell I can dance, I’m going to, even if it’s lower body booty-shaking only. I am eager to see friends and family, so if you’re headed this way, please give me a holler.
February 22, 2008
Dear friends and family,
I have been truly moved by your emails—filled with love and support and offers of help. Thank you so much. I am so grateful for all of you, and really would not have gotten through these last weeks without your cyber blasts of love. I hope to be able to get back to each and every one of you, too, so bear with me while I try to get caught up.
In the meantime, I promised I would keep you updated, so here we go. (For those of you who want the full scoop, let me know and I can email you a PDF version of it.)
I received the full pathology report yesterday, and I have needed to take some time digesting, processing, and letting the initial shock wear off before writing and being able to present it to you. Of course I knew going in that I had breast cancer, but hearing the details of the report felt quite different, and made it seem all the more real. I have infiltrating ductal carcinoma in-situ, so it is invasive, which means chemo after surgery for awhile. The report did offer up some positives, though, as my old friend Rebecca Liu, an ob/gyn oncologist in Mich, pointed out:
some good things to focus on:
grade 1 tumor (grade 1 = slowest growing, grade 2= medium, grade 3= fast growing)
estrogen receptor and progesterone receptor positive (ER/PR +): better prognosis Her2neu negative: better prognosis.
If you had to pick, you got the good kind I guess.
At this point, I’m all about “good things to focus on.” It’s really the only thing to do. Otherwise, I would surely and spontaneously combust. There are still things we don’t know—the staging, whether it has spread, etc. More tests and surgeries are needed. My next steps include trying to get a second opinion from a top breast cancer doc in Boston, making decisions as to what kind of surgery I think I want, and having the surgery within the next four weeks. I’m still trying to figure out if breast-saving surgery (lumpectomy with a sentinel lymph node biopsy—to see if cancer has spread) will give me the peace of mind I know I will need once this is over and done with. My surgeon is more comfortable with a mastectomy—he said he was done to the muscle during the first biopsy, and since there’s still cancer left (present at margins), he’d have to go deeper, and take more tissue out to be sure, and well, would it be worth saving? And would I be at a higher risk of re-occurrence? Apparently yes, I would, but with the same end results. And if I go with a mastectomy, would I go with reconstruction? And which kind? There are some horror stories out there about the kind of healing that is needed after a mastectomy with reconstruction. Would I need to do it right away? Would I want to think about it?
The other major decisions I am grappling with are trying to figure out who to see in Boston, and whether to have my surgery done there or closer to home. I have received so many great recs from so many of you—and I thank you for them. It has given me a place to start, which is enormously helpful. I have contacted Sridhar Ramaswamy, a Williams classmate who is a cancer researcher/oncologist at MGH/Harvard, with hopes that he can help guide me to the right team of people. Presently, I am due to be in Boston next Friday for an appointment with a breast surgeon at MGH, a Dr. Michelle Specht. Dominick’s birthday is the day before, so we may spend the night and try to do something fun for a change in the big city.
One of the most difficult parts of this is trying to figure out what this means for my domestic landscape—which is certain to change. I know I’m going to need a lot more help than I have ever needed--I am currently homeschooling the boys, and loving it, and wanting to continue, but know there will be days when I cannot teach them or even guide their sweet independent work without help. Therefore, I am trying to prepare by soliciting guest lecturers and substitute teachers. The boys are holding up fairly well, but are filled with terror. When I first got my diagnosis, it was Dominick who took my face in his hands, and said, “Mom, look at me. Look into my eyes. You’re going to be okay. You’re going to okay.” He seems to know exactly when I need a hug, or a word of reassurance. And yet, he’s not even nine—and needs to vent, process his own fears, let it all hang out. Last night I was able to talk him into spilling it all, and we cried together for a long time, his little declarations of love and fear nearly breaking me in two. Luke, too, is reeling, and fighting it in his own 13-year old way. He was incredibly grown-up when I told him the diagnosis, telling me he'd be be "there for me" and help me in any way he could. But it's tough on him, on both of them, trying to get their heads around all of this--this dark, scary stuff that has floated on the periphery of our worlds for so long, that has now invaded, interrupted, changed our lives for good. So, I ushered Luke into my room last night, too, to talk, acknowledge how shitty this was for not just me but for him and Dominick and Jim, too, encourage him to try not to hold it all in, to be brave and let it out—and he did, so painfully afraid that I might die, that I might not be there for him. I’m doing my best to be strong for them. They are my everything. I so desperately want to be there while they grow up, the thought of even missing some of it is harrowing. Can’t go there.
One day at a time. Sometimes it’s almost too much to think about beyond that, but I have to, and my surgeon and I discussed what the year ahead might look like. “The year?,” I asked, in disbelief. “Yes,” the surgeon said, “this is going to be a time for you to focus on getting better and not a whole lot more.” It will be a time of receiving big, bone-crushing lessons, peeling back the layers, getting to know myself better and loving what I find, shining the light on all the dark spaces inside and out, holding on to what is dear and letting go of what no longer nourishes, finding the laughter & joy amidst the tears & pain, and trusting in this life. I can talk big, but truth is I am still trying to peel myself off the pavement—I feel like a cartoon character that has been hit by a truck and is waiting for the animators to restore my luster, fill me out—but I do not feel whole. I told the doctor that I felt like, in a really strange way, I was planning my wedding—something big and momentous that will change my life, something rife with decision making and planning, not to mention that my mother has been completely galvanized into action, into researching the top docs, making her lists, assembling care. I’m just trying to grasp at the reality of it all--it seems far too big for me, and in a sense, I am trying to keep it at bay, while at the same time make some really tough decisions.
I mused not long ago that my breasts—having spent their lives feeling self-consciously undersized, being ridiculed and maligned, unsuccessfully trying to fit into a bra, any bra, and hearing, again and again, “No, they don’t make 38As,” and then enjoying a renaissance as the favorite neighborhood Dairy Queen, pumping out 6 years worth of fresh milk for two quick-growing baby boys, being squeezed and adored by nursing toddlers, and then shrinking shamelessly back to age 12-size fresh sprouts—should really be enjoying a lovely retirement by now. Oh well. It is what it is. I was restless for change. Here it is.
I do wish you all lived next door, and could come over and have tea. I miss you, and hate that so many of you are so far away. But I am so happy you are there at all, and do hope to see you sometime soon.
There is much to look forward to. I’ve told the boys that we will plan a great trip someplace fantastic this late spring or summer, when I’m fairly well healed up and have a break in between chemo. I am sad to have to miss my father’s wedding celebration in Yosemite this April, but am hopeful that I can still make my 25th Exeter reunion in late April—and if there’s any way in hell I can dance, I’m going to, even if it’s lower body booty-shaking only. I am eager to see friends and family, so if you’re headed this way, please give me a holler.
February 22, 2008
A Diagnosis, and More Waiting
One of the hardest things about having breast cancer has been knowing how to share the news. It's not good news, and it's not news I would want to inflict on anyone, particularly people I love and care about. But I decided early on that I needed to reach out to friends and family, that I needed to activate a network, pull a team together, learn from others, and make sure my family and I had the support we would need as we began to make our way through this unknown, harsh landscape. And so, I sent out the following email to a vast number of old Exeter and Williams friends, family members, neighbors, and friends in the area, and was astonished to receive so many gifts in return, of wisdom, love, prayers, offers of help, and immediate action--with people activating their own networks to pass along the names of top breast cancer docs, treatment centers, and hospitals, clinical trials and promising drugs, and friends of their own who had their own survival stories to share. I have felt a bit like those unsuspecting people in the Verizon commercials, with their network following them every step of the way. It's a good feeling--to have a web of support behind (and underneath--in case of the inevitable stumbles) us--and as we head forward, much of my fear and uncertainty has been quelled. Thank you--
Dearest sweet, old friends of mine,
I do hope you are all doing well. I hope that 2008 is treating you and your families well, that you are feeling loved, that you are healthy, and finding the little nuggets of joy that wait to be discovered in each and every day.
I wanted to let you know (actually, I didn’t. It would be much more fun to let you know that I was adopting a little girl, or needing some advice about what kind of refrigerator to buy, so apologies) that I was just diagnosed with breast cancer. I won’t have the full report until Thursday, but am hoping for the best possible news—that I’ve caught it early, that it hasn’t spread, that it is a non-invasive, non-aggressive form confined to my breast tissue, that I can save my small, worn-out-from-nursing left breast.
I had an iffy mammogram about three weeks ago, (I’ll never forget that initial feeling in my gut—as if a bullet of terror had suddenly lodged there—when I got the call), and so had retakes and an ultrasound. The radiologist, who is an old friend (I took care of his boys when he was going through a tricky divorce many years ago), came and grabbed me and took me to his office to show me the films, and the spot which has clearly changed over the last couple of years. I could tell from his eyes and the expression on his face that he was worried. “I just can’t make it go away,” he said. Several days later, the surgeon—a young-looking 40 year old by the name of Stephen Fox—tried to conduct a stereotactic biopsy, a bizarre procedure in which I lay face down on a table with a cut out for my breast, head and arm to one side for about 45 minutes, while they (surgeon, tech, and radiologist) squished my breast in the mammo machine (that worked below table, much like getting your oil changed in a car) about 10 different ways, took about 8 different mammo films, each trying to pinpoint the exact location of the tissue so that they could then put a needle in and extract a sample of the tissue. I had been told it would be a long shot, since my breasts are so “small” and the tissue was so close to the chest wall. My neck was wrenched, and I was thinking about all the radiation from the mammograms, and put a stop to it at a certain point—it clearly wasn’t going to work.
So, plan B—needle localization and incisional biopsy the next day. I had knee surgery about 4 weeks ago to remove a small lipoma (benign fatty tumor) from the inside of my left knee that was bugging me at night when sleeping; so I was suddenly well-versed in the surgery procedures at our local hospital, knew the nurses, etc when I arrived last Tuesday for my biopsy. They took me downstairs after pre-op to do the needle loc, another bizarre procedure in which a tech works with the radiologist to again, pinpoint the exact location of the tissue with a mammogram—and after numbing the breast, the radiologist inserts a wire with a needle—a titanium clip is left to id the spot, the wire is left to help guide the surgeon, and when the needle is extracted, it is a strange experience to see and feel blood coming out of my breast (felt a bit like breast milk, warm, sticky, but red—they hit a vein). In surgery, they put me out with twilight sedatives, though I did wake up once or twice during the 45-minute procedure b/c I was feeling some pain and called out “ouch, that hurts,” and I could hear them say “give her more, give her more.” A little bit like a bad movie…but it seemed to go okay. I went home feeling very sore, but the incision has healed well.
The waiting was very difficult. I haven’t slept well all month, first b/c of my knee surgery, and then b/c of very sore breast and, of course, anxiety, strange dreams… The pathology report was due on Friday, and I had asked the surgeon to call me and not wait until my appt with him this week, so the kids and I tried our best to go about our usual homeschooling routine, doing algebra by the fire, reading aloud to each other, etc. Most of Fri came and went; I called the doc at about 2, b/c Luke had a basketball game and I felt like I needed to know before then. Of course, he had not yet rec’d the report, so said he’d call back at about 4. By now, Jim had taken Luke to his game, and Dom and I decided to drive down and catch the end. The call came in just as we were about to pull in to the high school’s driveway. As soon as he asked, “Are you driving? Can you pull over?,” I knew it was not going to be the news I had hoped for. I asked him just to “give it to me.” And he did. I felt horrible that poor Dominick was with me at the time, and had to sit through that conversation. I tried to comfort him as best I could, hugging him and holding his hand, but at one point he simply retreated under his hood and cried.
My initial conversation with my surgeon tells me that there will be more surgeries ahead & that he wants me to prepare for the possibility of a mastectomy (given the size of my breasts, he says, there might not be much left after the next go around, but I am eager to save it, small or not). There are many unknowns, and I hope to have more answers by Thursday afternoon.
Jim and the boys have been great, very loving and supportive, and my mother has been out to help a lot--she retired this past June, and lives about an hour away. We are keeping busy. I am trying to stay strong—emotionally and physically—doing my yoga and even a few light weights. I know that the road ahead will be difficult, that there will be significant changes in my life, that I will have to dig deep to bring out my warrior. I am trying hard not to linger in those dark places, and to contain my sense of overwhelm. The terror is still there, but I know I am ready to kick ass—I’m so eager to be well, healthy, strong, and whole. I have a friend who lives in the next town who was diagnosed just three weeks ago. We ran into each other the morning of our last surgery—not knowing what the other was going through. She has been a well-spring of support and resources. I have also written to an old Exeter friend, Rebecca Liu, who is an ob/gyn specializing in oncology at the Women’s Hospital in Mich. I am hoping to talk to her tomorrow—it’s only been 25 years!! She’s recommending getting a second opinion, and some genetic counseling (my grandmother had breast cancer twice), probably in Boston—Brigham and Women’s, or Mass General. I also have written to a Williams classmate Sridhar Ramaswamy, who is an oncologist at Dana Farber; I’ve asked him to throw me a line, make a few recommendations of good people. If any of you can recommend good people, please send your ideas my way!
I miss and love you all, and want you to take good care of yourselves. Do your monthly self-exams, don’t be afraid to ask questions if you think you may have found something, even if it turns out to be absolutely nothing to worry about, and please, please, have your mammograms. This was not something I or my ob/gyn or even my surgeon was able to palpate, so it was really the mammogram that caught it—that, and the good eye of my radiologist. And, if you have any wisdom to pass my way, please do. I am quickly realizing that it is the web of good friends like you that encircles me, nurtures me, and keeps me afloat.
February 18, 2008
Dearest sweet, old friends of mine,
I do hope you are all doing well. I hope that 2008 is treating you and your families well, that you are feeling loved, that you are healthy, and finding the little nuggets of joy that wait to be discovered in each and every day.
I wanted to let you know (actually, I didn’t. It would be much more fun to let you know that I was adopting a little girl, or needing some advice about what kind of refrigerator to buy, so apologies) that I was just diagnosed with breast cancer. I won’t have the full report until Thursday, but am hoping for the best possible news—that I’ve caught it early, that it hasn’t spread, that it is a non-invasive, non-aggressive form confined to my breast tissue, that I can save my small, worn-out-from-nursing left breast.
I had an iffy mammogram about three weeks ago, (I’ll never forget that initial feeling in my gut—as if a bullet of terror had suddenly lodged there—when I got the call), and so had retakes and an ultrasound. The radiologist, who is an old friend (I took care of his boys when he was going through a tricky divorce many years ago), came and grabbed me and took me to his office to show me the films, and the spot which has clearly changed over the last couple of years. I could tell from his eyes and the expression on his face that he was worried. “I just can’t make it go away,” he said. Several days later, the surgeon—a young-looking 40 year old by the name of Stephen Fox—tried to conduct a stereotactic biopsy, a bizarre procedure in which I lay face down on a table with a cut out for my breast, head and arm to one side for about 45 minutes, while they (surgeon, tech, and radiologist) squished my breast in the mammo machine (that worked below table, much like getting your oil changed in a car) about 10 different ways, took about 8 different mammo films, each trying to pinpoint the exact location of the tissue so that they could then put a needle in and extract a sample of the tissue. I had been told it would be a long shot, since my breasts are so “small” and the tissue was so close to the chest wall. My neck was wrenched, and I was thinking about all the radiation from the mammograms, and put a stop to it at a certain point—it clearly wasn’t going to work.
So, plan B—needle localization and incisional biopsy the next day. I had knee surgery about 4 weeks ago to remove a small lipoma (benign fatty tumor) from the inside of my left knee that was bugging me at night when sleeping; so I was suddenly well-versed in the surgery procedures at our local hospital, knew the nurses, etc when I arrived last Tuesday for my biopsy. They took me downstairs after pre-op to do the needle loc, another bizarre procedure in which a tech works with the radiologist to again, pinpoint the exact location of the tissue with a mammogram—and after numbing the breast, the radiologist inserts a wire with a needle—a titanium clip is left to id the spot, the wire is left to help guide the surgeon, and when the needle is extracted, it is a strange experience to see and feel blood coming out of my breast (felt a bit like breast milk, warm, sticky, but red—they hit a vein). In surgery, they put me out with twilight sedatives, though I did wake up once or twice during the 45-minute procedure b/c I was feeling some pain and called out “ouch, that hurts,” and I could hear them say “give her more, give her more.” A little bit like a bad movie…but it seemed to go okay. I went home feeling very sore, but the incision has healed well.
The waiting was very difficult. I haven’t slept well all month, first b/c of my knee surgery, and then b/c of very sore breast and, of course, anxiety, strange dreams… The pathology report was due on Friday, and I had asked the surgeon to call me and not wait until my appt with him this week, so the kids and I tried our best to go about our usual homeschooling routine, doing algebra by the fire, reading aloud to each other, etc. Most of Fri came and went; I called the doc at about 2, b/c Luke had a basketball game and I felt like I needed to know before then. Of course, he had not yet rec’d the report, so said he’d call back at about 4. By now, Jim had taken Luke to his game, and Dom and I decided to drive down and catch the end. The call came in just as we were about to pull in to the high school’s driveway. As soon as he asked, “Are you driving? Can you pull over?,” I knew it was not going to be the news I had hoped for. I asked him just to “give it to me.” And he did. I felt horrible that poor Dominick was with me at the time, and had to sit through that conversation. I tried to comfort him as best I could, hugging him and holding his hand, but at one point he simply retreated under his hood and cried.
My initial conversation with my surgeon tells me that there will be more surgeries ahead & that he wants me to prepare for the possibility of a mastectomy (given the size of my breasts, he says, there might not be much left after the next go around, but I am eager to save it, small or not). There are many unknowns, and I hope to have more answers by Thursday afternoon.
Jim and the boys have been great, very loving and supportive, and my mother has been out to help a lot--she retired this past June, and lives about an hour away. We are keeping busy. I am trying to stay strong—emotionally and physically—doing my yoga and even a few light weights. I know that the road ahead will be difficult, that there will be significant changes in my life, that I will have to dig deep to bring out my warrior. I am trying hard not to linger in those dark places, and to contain my sense of overwhelm. The terror is still there, but I know I am ready to kick ass—I’m so eager to be well, healthy, strong, and whole. I have a friend who lives in the next town who was diagnosed just three weeks ago. We ran into each other the morning of our last surgery—not knowing what the other was going through. She has been a well-spring of support and resources. I have also written to an old Exeter friend, Rebecca Liu, who is an ob/gyn specializing in oncology at the Women’s Hospital in Mich. I am hoping to talk to her tomorrow—it’s only been 25 years!! She’s recommending getting a second opinion, and some genetic counseling (my grandmother had breast cancer twice), probably in Boston—Brigham and Women’s, or Mass General. I also have written to a Williams classmate Sridhar Ramaswamy, who is an oncologist at Dana Farber; I’ve asked him to throw me a line, make a few recommendations of good people. If any of you can recommend good people, please send your ideas my way!
I miss and love you all, and want you to take good care of yourselves. Do your monthly self-exams, don’t be afraid to ask questions if you think you may have found something, even if it turns out to be absolutely nothing to worry about, and please, please, have your mammograms. This was not something I or my ob/gyn or even my surgeon was able to palpate, so it was really the mammogram that caught it—that, and the good eye of my radiologist. And, if you have any wisdom to pass my way, please do. I am quickly realizing that it is the web of good friends like you that encircles me, nurtures me, and keeps me afloat.
February 18, 2008
Subscribe to:
Comments (Atom)