How to Be Diagnosed With Cancer

It’s a tacky educational brochure you hope no one ever thrusts in your hands: So You’ve Been Diagnosed with Cancer, Now What?

I certainly didn’t know what to do with myself. My first diagnosis when I was 28 came after a game of phone tag. The surgeon who performed the needle biopsy—the gentleman who had the bedside manner of the know-it-all valedictorian who was counting down the days until he could get to his Ivy League school and be surrounded by less irritating people—had been calling for days before finally reaching me. This was before cell phones, and despite his sharp edges Dr. Bethke still knew it’s not news you leave on an answering machine.

It was mid-morning on a Friday and I was at work, in my back corner desk of the basement office, facing in towards the four men I worked  alongside. We were graphic and web designers, producing websites and graphics for clients of a small design firm. The space was entered by a narrow, spiral staircase, every ounce of daylight diminishing with each twisty step. It was dim and quiet and breaking the stillness with a phone call felt like being on stage under a spotlight. I transferred the call into the small conference room used for storage. I hadn’t been in that space before, it felt foreign. I was on the phone with cranky Dr. Bethke, I felt foreign. He said it only once. I can’t remember hearing anything else.

You have cancer.

I packed up my bag, shut down my computer and muttered on my way past the guys’ desks, “I have to go.” I tried to catch my boss’ eye, but she was on the phone behind a wall of glass in her office. I kept going. I’d deal with her later.

I have cancer.

I drove 20 minutes home—smoking cigarettes the whole way— trying to decide how to tell my fiancé, John. He was on a road trip for work, due home later that night but could I wait that long? Did I want to tell him my news over the phone, when he was hours away from seeing me, hugging me, soothing me? Could I pretend not to know when he called to tell me he was on his way? I opted for rip-off-the-band-aid approach. I called him.

I have cancer.

I had been anticipating the news for so long, sickeningly aware it was coming for years and then for weeks, while I massaged a lump that wouldn’t go away, and was whisked within minutes from mammogram to ultrasound to surgeon in a numb haze of anxiety and fear. On some level I suspected it was coming, but the diagnosis was surreal. Even after 19 years and two different diagnoses, it remains surreal. It’s an unwanted mantra as the truth tries to find purchase: I have cancer.

My cousin Amy was recently diagnosed with early stage cancer. As she marches through the days towards the surgery, aiming for some normalcy and calmness for herself, her husband, and her two young children, she marveled to me, “One day will I stop waking up in the morning and having the first thought be I have cancer?”

It takes a long while. The brain is a miraculous machine that can do all sorts of impressive tasks on the fly, but processing a cancer diagnosis is not simple. Especially if you feel healthy, and extra-especially if you never felt a lump of concern but had doctors report it based on a screening exam. It’s nuts to think you can be walking through your life all normal, then someone takes a picture of your insides and tells you there is microscopic cancer growing. It’s hard to wrap your brain around that one. Is this real, is it true? Do I have cancer? They said I have cancer. I have cancer. The mantra.

The most important thing to remember now is our favorite family saying: Don’t Freak Out About Freaking Out. Yes, you’re likely rather obsessed with the C word, rolling it around in your mouth, practicing telling people and trying to sound nonchalant about it, while your head and heart are wrestling with facts and fears, freaking out. It’s OK to freak out. There will come a day when it’s not the first thing you think about, I promise. Today is not that day. Right now is for freaking out.

Give some energy to your head and your heart as needed. Your head will need to know all it can, and its questions will come in spurts as it takes in each new bit of information. Type? Stage? Recommendations? Second opinions? Plans, treatments, outcomes, statistics… so very many numbers. I was always surprised by the stat-speak of my first oncologist, a young woman whose bedside manner was the opposite of the arrogant surgeon. She touched my shoulder or my hand when explaining anything, she was warm and measured, she drew pictures and wrote notes for me. Yet she always sounded like an actuarial table: her primary goal was lowering my risk of recurrence and increasing my rate of survival. No numbers stuck with me; we all focus on what makes sense to us and clutch the lifelines that feel most secure. You don’t have to know everything, you’ll keep track of what you need. I couldn’t tell you what my risk of recurrence was before surgery or after chemo. My head asked the questions it had to know, and I felt taken care of. That’s important.

Your heart will need that feeling as it grapples with roiling emotions. Anger, despair, sadness, grief, fear. There is much to be afraid of, no matter what the diagnosis or prognosis is—the unknown is scary in and of itself. A cancer diagnosis challenges our sense of control, our relationship with our bodies, our place in the world, and on the path of our lives. How will this affect me, my family, my lifestyle, my livelihood, my life? Will I get sicker? Will I die? The head might know how good the prognosis is or what the treatment plan entails, but the heart may not be soothed by statistics and scans. The heart needs faith.

Faith comes in many flavors. You can place all your eggs in the Western medicine basket, or spend all your energy trusting alternative therapies. You may seek refuge in a religious tradition, you may find solace in private prayer. For me, faith is entwined with fate and acceptance; I may not understand why things happen the way they do, maybe there is no explanation anyway. It is what it is, my lot is my lot, my fate is yet to be revealed. I move forward with the faith that there is beauty within bad things, that we humans are stronger and kinder than we give ourselves credit for, that dealing with cancer is just another marker on the road map of my life. It sucks, no doubt about it. But ultimately, it ain’t nothing but a thing.