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: http://www.cancer.gov/cancertopics/factsheet/Therapy/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.