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