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

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