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
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