“You have cancer,” the doctor said over the phone. He actually said those words! It sounded like a joke. They don’t actually say “you have cancer” over the phone was what I thought. It would be too comical.
But it wasn’t. He said those exact words. And after a short conversation where he told me I would need to schedule an appointment with a breast surgeon, I hung up the phone and put my hand on the kitchen counter to steady myself. My daughters were still watching television in the living room, right in front of me. Dinner was still half made in the kitchen. Husband would be home in about an hour. I called him with the news.
Everything in the house was still the same, but everything had changed. I swallowed hard and parented for another hour. When husband came home, he spread his arms wide for a hug and I saw tears in his eyes.
“No,” I said. “Everything’s going to be fine. We’re just going to keep on going with our lives. The girls will see that everything is okay.”
Mistake #1: When I shut down my own feelings in response to the news, I shut down his feelings as well. This would set the tone for the way that we would talk to one another about my health over the next year, and was, quite possibly, one of the nails in the coffin of our marriage. I wasn’t in touch enough with my own feelings to understand what was going on in my heart at the time. I didn’t think there was space in my life, my partner’s life, or my home for my pain, so my response to everything was to do. Do do do.
I think, more than anything else, I was afraid that his tears would turn into mine. And Belle and Bugg were right there, 5 and 2, in the adjoining living room, watching us. How could I waffle for even a moment? Dinner had to be made. I had to go to work the next day. After all, my job provided my family’s healthcare. I went into the office two days a week and stayed home with the girls the other three. Of course I worked more than two days a week, fitting in paper grading, emails, and lesson planning during naps, TV time, and mostly after bedtime. I didn’t have a schedule because I didn’t need one: I was either at work, with the girls, or catching up to prepare for classes. Always behind, I constantly thought about what I had to do next. When I was with the kids, I was often only half there, my mind adding to and ticking off items on my to do list.
At some point, I found the paperwork in my medical file that listed my BI-RADS number. A BI-RADS number lists the likelihood, based on the characteristics of the tumor, that it is cancerous. 0 = no cancer. 5 = we’re pretty sure it’s cancer.
My number: 5.
Now no one told me this. Remember the radiologist? She knew my BI-RADS number was 5 when she sat on the bed with me. But still she said that I needed a biopsy to “rule out” breast cancer. If I had not found that number, I might have gone into the biopsy thinking I still had a chance.
Breast surgeons at Northwestern Memorial Hospital are in pretty high demand, and I had to wait two weeks for my next appointment after the “You have cancer” call. During that appointment, my surgeon laid out the locations of my three (three!) tumors, explained why a lumpectomy was not an option and why I would need a skin-sparing mastectomy, and told me that she hoped I could get away with just radiation and not chemotherapy treatment afterward.
Mistake #2: I didn’t bring anyone with me to this appointment. Husband was watching the girls. We didn’t do babysitters then. I made less than 50K at my job, and he was a student. Our income was fixed. And I couldn’t bear to ask my parents to drive an hour to either watch my kids or come with me. It just didn’t seem that important.
It is that important: Bring someone with you to your appointments. Preferably someone emotionally intelligent who asks good questions and takes good notes. If all else fails, voice record the appointment on your phone. What I wouldn’t give to have a recording of my initial appointment with my breast surgeon!
Even though I had walked into the hospital with just a fifteen minute appointment scheduled with my breast surgeon, I ended up meeting with a nurse navigator who gave me a book of options for support during treatment (keep in mind, I had only found out that I needed a mastectomy thirty minutes earlier) then sent me for genetic testing to see if I had the BRCA mutation – a genetic mutation that means your likelihood of getting cancer is way higher (think Angelia Jolie). From there I went to meet with a plastic surgeon who explained that I had one option for reconstruction: a tissue expander inserted in my chest wall at the time of my mastectomy.
“In six months, you’ll be back to normal,” the plastic surgeon promised me. “Of course,” he added, “if you need radiation, there’s a 30% chance the reconstruction will fail.”
When I arrived home to my husband and girls that night, it was dinnertime. I had planned on being gone for an hour or two. I felt shell shocked. It was like I had gotten a new job – only I didn’t know that I was going to that job when I woke up that morning.
I may not have put on a happy face, but I did try for my best positive and upbeat one. As usual, I put feelings to the side and focused on what needed to be done. Right back into the routine: dinner, bath, books, brush teeth, bedtime. Our schedules so full that I didn’t want to upset them.
On the surface, my biggest worry wasn’t Stage 2 breast cancer. My biggest worry was how to care for my family while I went through a health crisis.
Beneath the surface, a place I did not have access to then, but can only see now, my biggest worry was losing my family. My biggest worry was death.
I didn’t tell many people about my diagnosis right away. I had one month between the meeting with the breast surgeon and a surgery that would put me out of work (and parenting) for six weeks. I called my best friends, both living in other parts of the country. I told my boss so that I could apply for FMLA. It took me two weeks, but I finally told my parents.
Mistake #3: I didn’t want to tell people about my cancer diagnosis. I told none of my neighbors, colleagues, or students, and I waited to tell my parents and most of my friends. I think it was because telling them would put ME center stage. MY problems, MY diagnosis, MY body. I didn’t want to draw attention to myself.
I was wrong. When I didn’t tell people, I distanced them from me and my life. I kept them at a distance, and failed to cultivate the intimacy that leads to real human connection. I also kept my family from getting the support that we desperately needed during an overwhelming time.
It’s super hard to ask for help when you’re going through cancer, any health crisis, or just a difficult patch. Watch for a future blog post where I offer a list that you can send to your friends so that they know how to help you through this difficult time.