Ahhh, 2017, the year when the seemingly impossible became possible (for so many of us, in so many ways). As this year comes to a close, and as I personally have some major hurdles now behind me, I find myself reflecting on some of the choices that I made. Why did I approach this problem that way? What compelled me to follow one path and not another? Given all of the information that I have now, would I do it the same way again?
On 11/17/17 I underwent a lumpectomy, or breast conservation surgery. It was an outpatient procedure, 6 hours total from our home to the hospital in Boston and back. The surgery was a success on many levels. In late June I tested positive in one lymph node (although, with the information we now have post-surgery, my surgeon believes I had cancer in two lymph nodes, known as a “local invasion”). Because I had tested positive prior to treatment, there was a possibility that I would receive an “axillary dissection” while under anesthesia; it all depends on how the lymph nodes test while surgery is being performed. In an axillary dissection, the surgeon removes all the lymph nodes in a triangular area under the armpit. Every body is different, and that could mean as little as six lymph nodes, or as many as 26 (the range they’ve seen in previous patients). As the lymphatic system is responsible for filtering waste from the body, keeping as many lymph nodes as possible was kind of a big deal for me. I awoke from surgery to learn that my lymph nodes had tested negative–hooray! They removed four “sentinel nodes” (the ones responsible to drain the cancer), which is the current standard of care in breast cancer surgeries.
For 11 days post surgery, we waited. While we waited, I healed, my family carried all my heavy burdens, we gathered with friends and family on our national holiday intended to give thanks. On the evening of 11/28/17 I received a call from my surgeon—it was good news. The pathology was back on the tissue and lymph nodes they removed from my body, and there were no cancer cells to be found. We had our clean margins (and then some) and no further surgeries would be recommended at this time.
I went into Dana Farber on 11/29 to meet my surgeon and oncologist for my follow-up appointments. The surgeon reiterated what a huge win this was on my journey, to have a pathologic complete response (pCR), with no cancer left in the tissue that we knew was cancerous six months prior. Jerry and I basked in the glow of this win for the few hours between appointments. We went for a walk, enjoyed brunch, stopped in a beautiful church on the way back. I felt incredibly peaceful.
Four hours after sitting down with my surgeon, we met with my oncologist. She also congratulated us on our win, and then detailed the post-surgery treatment recommendations: 12 weeks of chemo, followed by 6 weeks of daily radiation, rounded out by 39 weeks of an antibody that fights the specific type of cancer cells that were found in my body. All told, my social calendar will include appointments for cancer treatment through late 2018/early 2019. Cheers!
Learning that I was “cancer-free” and then learning the intensity of the treatments that still lay ahead has been difficult for some people to understand. I took a few days to process the information and to do some research online. What I’ve come to understand is that I’ve been very good at focusing on what is immediately in front of me, rather than worrying about what lay down the line. From June 13th forward my mission became to rid my body of cancer. I went into action the moment I was diagnosed, a full 29 days before my first chemotherapy treatment. For my purposes, it didn’t matter what kind of cancer cells I had, or how far they had gone, or how fast growing they were. What mattered was that I evict them from my body by any and all means at my disposal. Although I had already undergone a mammogram, ultrasound and biopsy through my local hospital, the specialists at Dana Farber like to double check things. They sent me for biopsies, ordered scans and analyzed tissue samples. As the results came back, many of them different than what I had originally received, my mission remained the same: kick cancer out of my body. Early July brought the news that I had two tumors, not one; I had grade III cancer cells, not grade II (grade III is the fastest growing types of cancer cells); the cancer cells in my body were strictly HER2+, not also ER+ (straight HER2+ is a more aggressive type of cell); and the cancer had spread to at least one lymph node, despite there being no physical indication of that in my clinical exams.
These had the potential to be very dark days. Some of them were harder than others, especially for those around me who didn’t inhabit my body, and couldn’t feel or know what I felt or knew. The darkest day for me was June 23rd, the last day of school for my children, the day I told them I had cancer. I physically felt terrible, which is unusual for me—throughout this cancer journey I’ve normally felt pretty good. Maybe I felt so unwell because I could finally acknowledge this illness in front of my kids? Or perhaps because I could fully feel the weight of the journey ahead? Having just met my doctors at Dana Farber on June 21st, I had not yet done the scans and biopsies that would reveal the true aggressiveness of the cancer I was facing. I didn’t yet know the “facts” of my situation. Filled with fear and uncertainty and physical pain as I lay in bed on the night of the 23rd, I knew I had a choice. I had to take control of the story that I was creating. On the darkest of days, I chose that this would be a story of healing.
The next few weeks were filled with appointments. I endured mammograms, ultrasounds, a bone scan, CT scan, and echocardiogram. On June 29th, Dana Farber biopsy day, I had 15 needles jammed into my breast; I learned that day that cancer bleeds, because of all the blood vessels the tumor has hijacked to feed itself. The swelling and bruising from that procedure stayed with me for 2 ½ weeks. During that window of time I couldn’t feel what was happening with my tumors; when I started chemo on July 12th, my doctor still couldn’t get an accurate measure. But I held fast to my story of healing, even as the results of the biopsies came back indicating that my breast cancer profile was as aggressive as they come.
On July 17th, five days after my first chemo treatment, the swelling from my biopsies finally went down, allowing me to feel what was going on in my chest. I did not feel any tumors. On August 2nd I went for my second chemo treatment, and my oncologist confirmed that she also didn’t feel any tumors. The bloodwork I had throughout this process all came back excellent. In the months leading up to my diagnosis, I felt the cancer in my body and I felt the energy of the tumor growing. On Saturday June 24th, the day after I consciously changed my story, I felt that energy lessen. In the space of fear and pain that I felt that Friday night, my brain wanted to think that I must feel so terrible because this is what it feels like when cancer is spreading. Creating the future from that space was not going to be good. In a conversation with Jerry I actively transformed the story from “this is what it feels like when cancer is spreading to “this is what a body feels like when it’s kicking cancer out.” The next 24 hours brought about a healing crisis, triggered by the numerous healing modalities I pursued while waiting to start chemotherapy. I ran a fever localized to my chest. When the fever broke, the tumor felt different, less dense, less energetic. The mind-body connection is a powerful mechanism to behold.
At the time of diagnosis, it wasn’t helpful to dwell in how aggressive my particular cancer cells were. It was difficult to believe that I had cancer AT ALL; I chose to ignore that I had all the characteristics of a very aggressive cancer profile (HER2+ and grade III cells, a young age, local invasion). I barely read the multiple books I ordered online or checked out of the library. Of the multiple opportunities I had to connect with survivors (friends of friends, former classmates, or through Dana Farber support communities), I only ended up speaking to two. There were a few days when I could really have used that support, and on those days I wasn’t able to make the connections for a variety of reasons, all out of my control. By the time those connections were widely available to me, I no longer felt compelled to pursue them. I had faced the depths of fear and crawled my way back to the surface. The healing had begun.
From where I stand now, I believe that I didn’t feel a strong need to connect with people about their cancer experiences because a lot of people have not had great experiences with cancer. The amount of fear and sadness that encompasses a cancer diagnosis can be overwhelming. Those of us who have heard the words “you have cancer” join a club that has existed for as long as we’ve been able to study humans. Archeologists have found evidence of cancerous tumors in the remains of Egyptian mummies, along with evidence that those tumors were cauterized—cancer treatment has been around for a long time. Hippocrates was the first person to coin the name cancer (he lived from 460-370 BC)—he called cancerous masses karkinos (the Greek name for crab). I recognized early on in my own cancer journey that, as a cancer patient, I inherited a cultural conversation that had been passed down for thousands of years. For many of the patients who came before me, cancer did NOT go well. I can see now that in my early days of cancer diagnosis, it was just as important to fight off the cultural conversation as it was to heal from the cancer cells. I did not want to dwell on “what has happened to those before me.” I chose to test the limits of what’s possible. If I didn’t know what was “expected” or “typical,” then I could hang out in the land of possibility. It’s there that I found my power.
As I prepare to embark on the next phase of treatment, I’ll continue to hitch my star to the conversation around what’s possible. Am I delusional? Maybe. But it works for me. So much of healing from cancer or any major illness is a mental game. What stories are you telling yourself about your body? Is your body failing you or is it protecting you? Is that pain caused by a worsening illness, or is that the pain of a healing crisis? I don’t say this to diminish the experience of those who have gone before me. I’m not here to judge their journey, only to share my own. I like to think that we all have a purpose in our lifetime, and sometimes that purpose is served in death; for others, it is served in life. Sometimes the illness overwhelms the body and it is time for the body to release the soul. And if that had been my path, I hope that I would have chosen to travel it with power and strength and dignity.
This post is dedicated to the millions of people who have gone before me. I am grateful for your sacrifice and contribution to our current understanding of cancer and its treatments.
Family photo, Christmas Eve 2017
Cooper with Santa. Cooper single-handedly inspired all of our Christmas spirit this year.
Christmas Eve sunset in Providence, RI
Dad Bod Fanny Pack + Santa suit + Adorable 7 year old = Winning.
A Christmas tradition…Jerry reading “‘Twas the Night Before Christmas” to the boys