Traumas, Bruises and Healing

Picture this scene:

It was winter in 2011.

I was 35 years old.

I had two little kids, a girl and a boy. Clare was 4 and Hayes was 1.

My husband Sam was totally engaged in family life, a great husband.

My book publishing job was full time and included frequent travel.

I was trying to take care of the kids, to be a good wife and good friend, to exercise, to eat well, to cook, to read, to stay up to date on current events, to relax, to meditate, to travel, to volunteer at our preschool.

I knew that I could do all I wanted to do and I was happy a lot of the time. But as much as I was happy, I was exhausted and cranky.

I remember saying to Sam that I couldn’t maintain the level of intensity, that my body was breaking.

I was worn out.

On the last Sunday in February, I felt a lump in my right breast. Since Hayes was still nursing, there were lumps and bumps, but this felt different. More solid. I went to my midwife’s office on Monday morning, and the nurse agreed that the lump felt unusual. In fact, the cheerful banter about the kids immediately stopped when she felt the lump. Her face was instantly serious, drained of color. She recommended that I have a biopsy and she scheduled it for Thursday of that week. That was my first mammogram and my last. The experience of the mammogram and biopsy was fine. I was a little scared, a little shaken, a little teary but at that point there was a 50% chance that the lump would be nothing to worry about. Life would go on as usual.

But that of course is not what happened. The results of the biopsy came back on Monday morning. The same nurse who helped during both of my pregnancies and who sent me to the hospital for the test called me that morning. She said that all of the details of the biopsy were not back. The preliminary news: You have breast cancer. It is invasive duct cancer. We can’t tell you more at this point. You have a meeting with a great team of doctors at Mass General next week.

On the one hand, this was shocking news. I have breast cancer? I am 35 years old. I have two babies. I have a full time job. I have plans. How is this happening?

On the other hand, cancer had always been looming on the edges. My mom died of pancreatic cancer when I was 2, my brother was almost 6, and she was 33.

There was a haunting feeling that we were reliving history. The ages were too close, the story too close. I knew what Sam and my kids could lose. The pain is real and forever.

[I want to pause here for a second. I have a hard time untangling my cancer story from my life story. My mom’s death is certainly part of my cancer story, but it is important to note that it is really the central theme of my life story. Her death changed everything—from where I grew up to how I grew up to the person I married and to how I mother. My cancer story exists within her cancer story.].

In the days after the diagnosis, I was in organizational mode. I spent a lot of time organizing my office, calling family and friends, grasping for control.

At our first medical appointment, we talked about my cancer—about the stage, the grade, and the plan. Sam and I left with a clear idea of how MGH would treat my cancer. I would have a lumpectomy, followed by chemo, and maybe by radiation. We had a team in place. We felt in good hands.

At the recommendation of the doctors, I decided on genetic testing for a breast cancer gene mutation. It was notable that my mom had cancer in her early 30s as well, even though it was a different cancer, one that I always thought was not inherited. What I didn’t know before my diagnosis is that pancreatic cancer has a dotted line to the BRCA mutations.

A few weeks later, on a really crisp and bright morning, our little house was buzzing. I was getting ready for work, the nanny had just arrived, my husband was using the vacuum in the kitchen, Hayes was crying, Clare was saying “Mom. Mom. Mom. Mom. Mom.” The phone rang. It was my surgeon. The rest of the world fell back, sound faded, as I heard her words: You’re BRCA1 positive. This changes the course of treatment. We recommend a double mastectomy, followed by chemo and radiation. For whatever reason, I immediately agreed to this path. I was not reluctant to have the surgery, even though I nursed my babies for a long time and was still nursing Hayes. I was attached to my breasts, but I knew they had to go. I wanted every single breast cell to be history. The mastectomy would be followed by breast reconstruction and an oophorectomy because of an increased risk of ovarian cancer. At that point, I didn’t understand the long-term consequences of taking out my ovaries, removing my breasts, but even if I had, I would have moved forward with this plan. I wanted to do everything possible.

Waiting for the surgery was hard. The mind plays tricks: I knew that I could feel the tumor growing. I could feel it move to my lymph nodes.

The surgery was on March 31. I don’t remember arriving at the hospital, meeting with the doctors, going under—really any of it. I do remember my parents at the hospital. I remember being incredibly out of it. I remember a friend visiting, though only vaguely.

Day by day, I felt better.

At the end of April, I was accepted into a clinical trial which required a full body scan in preparation. Though my oncologist was confident that the cancer had not spread, I was happy to have the scan for peace of mind. A baseline. I went to MGH West for the day with my oldest and best friend Rosie. I drank the awful drink, we laughed, goofed around, and headed home. I was not nervous at all.

We had been home for about an hour when the phone rang. It was my doctor. Something in the liver looked suspicious and a biopsy was scheduled for the next morning.

The biopsy was the worst experience of my life. The giddiness of the day before was gone. I was terrified. My husband took me to the appointment in the bowels of MGH-no windows, no private room. Curtains only. The anesthesia did not totally knock me out because the doctors needed me to respond to cues. The suspicious spot was behind my ribs so the needle went between two ribs.

The medicine made me sick. I vomited so much that blood vessels were popped on my face. I couldn’t speak. Finally, around 8:00 my husband wheeled me out and we were home soon after. My daughter ran up to me—I remember in pink tulle—but I couldn’t speak and I was too weak to even hug her. I slowly carried myself upstairs and into bed.

This was a very physical experience. I felt so annihilated by the experience that I didn’t have the energy to worry about the biopsy results.

The results were fine. The cancer hadn’t moved. The suspicious spot was a lesion that has now been monitored for five years and hasn’t changed. We stayed on course. Chemo started in early May.

I got through chemo. I very rarely felt nauseated like I thought I would. What I did feel was totally crazy. I was wired and not thinking straight. I was wide awake but totally out of it. I felt out of my mind.

Surprisingly, over time, I began to feel healthy and confident with my cancer look. I loved the shape of my bald head and the colorful scarves. I felt beautiful, but not always. During a visit by my incredible sister-in-law Mary Lou, I happened to catch a glimpse of my naked body in a mirror. I was thin. I was bald. My breasts were gone, with only the shape of my expanders and stiches where my nipples used to be. My chest had been dug out up to my collar bones, so the upper chest was concave. The scar from Hayes’ delivery a year earlier was still red. It was shocking. The hug that she gave me in that moment literally held me up. Without her I would have collapsed in despair. She supported me and the moment passed.

Our family was in survival mode. During the treatment, my dad assured me that my story would be different than my mom’s story, that the times had changed, that my cancer was not her cancer, and that my ending would be a happy one. But the chance that I would leave these kids was too real.

The kids were little so cancer was not tangible to them in the way it would be to older kids, but it was hard on them. Our routine was destroyed. Clare turned 5 that May. Clare is amazing, full of life and vigor. She fights for what she wants—and at age 5, she wanted attention, sweets, and TV. People were coming and going. Everyone had different tactics for disciplining her. And different tactics for spoiling her. Presents, ice cream, pedicures. It was so confusing for her.

Hayes was a baby. After the surgery, I couldn’t lift him out of his crib. I couldn’t hold him. I stopped nursing him. I felt as if I was abandoning him. In August, after my chemo had ended and I was feeling better, I was on a walk with Hayes and Sam. Hayes wouldn’t come to me, and Sam said, accurately, “He doesn’t trust you anymore.” My heart was broken.

But then, moment by moment and day by day, we rebuilt our bonds.

During my cancer treatment, many people suggested that I go back to work for at least a year and a half, to find normalcy again. This was great advice, helping me to put other things besides cancer on center stage. But in June 2015, about four years after the diagnosis, I packed up my desk and headed home. I really wanted to be with my kids, to raise them, to mother. I felt that I was missing too much. We’ve spent the last year living normal lives—doing homework and extracurriculars, lounging, traveling, bickering, cooking, exercising. It has been a great year, filled with bumpy life.

My health has been good, and my trips to the cancer center have slowed down. Cancer still has my attention (when I had a stomach bug recently I asked my husband if he thought it could be metastasized cancer—he didn’t), but it is not the focal point. It is part of my story, not my entire story. It is my story, not my mom’s story. And I am thankful for this.