Wandering Around with a Hole in the Middle of My Face | Part Five

Navigating Through the 7 Stages of Grief

I still marvel at how my mind shifted that day. It was January 6, 2010. My day began with a follow-up doctor appointment to learn the results of the biopsy I’d undergone less than a week earlier, on New Year’s Eve, after an MRI had revealed a mass growing between my eyes at the top of my nasal cavity. A few weeks away from my annual Sundance Film Festival trip, the ordeal at that point felt like a temporary inconvenience. My doctor was solemn when she entered the examining room. We’d spent a lot of time together during the previous year as I‘d gone through a battery of blood tests, allergy testing, more blood tests, neurology tests, and so on. I’d reached the point of utter frustration around October when I stopped acquiescing to the experimental uncertainty and engaged in a relentless insistence that doctors keep searching for what was wrong, once the prognosis list had been narrowed down to a possible auto-immune disorder or cancer. Thus the decision to do an MRI and subsequent biopsy.

My very caring, sensitive primary care physician took my hands and said, “it’s cancer.” We were both quiet for a moment and then she said, “we’re going to do everything possible to take care of this.” And then as if my brain released its finger from the dike, tears started streaming down my face. I felt numb at first, honestly, but the tears just came. She handed me a box of tissues then went over the biopsy results and our immediate action plan. Since the biopsy sample was unable to determine which strain of cancer I had, she referred me to Stanford University for more testing. She hugged me and asked if I wanted to sit there for awhile to let the news sink in. I said no, I needed to go home. So I took my materials, walked out of her office and sat in my car for a few minutes until the tears stopped.

Grace Appears at a Stoplight

I pushed the ignition button on my Prius and pulled out into the street, feeling a little disoriented. I remember turning right out of the parking lot onto Soquel Avenue in Santa Cruz. As I reached the first intersection the stoplight turned red. I stopped. My jumbled thoughts stopped, too. Then a voice in my head, clear as a bell, spoke. “Well, if we have to go through this, let’s make an adventure out of it.”

And just like that I went straight from initial shock, to acceptance and pondering a new adventure. I can’t explain it, but I’m grateful that whatever took over my thoughts at that stoplight stayed with me as I went through the next harrowing months of further diagnosis, radiation treatments, and what seemed like endless appointments with specialists.

Though it is common to experience the Seven Stages of Grief when you receive a cancer diagnosis, I didn’t personally experience all seven. By the power of Grace, I paused for a moment at one, then sped past two through six and went straight to Acceptance and Hope. The way I see it, my family acted as surrogates. My parents and siblings all lived across the country from me at the time, my two sons lived nearby in California, and my daughter was a quick trip away in New Mexico. Here’s how the stages played out for me. My perception may be different from my family members, but this is my story so here we go.

1. Shock and Denial — my sister Carol and my youngest son Brian both have a great capacity for self-defense when met with life’s challenges. In different ways, they each go into denial mode. Not as an escape, but more as a deflection. They stay busy and focus on positive things. When I spoke with Carol she was always upbeat. She sent me cheerful gifts. Brian stayed away mostly. He did show up at the hospital after my surgery and at first couldn’t look at my bandaged face. I think it was an “if I don’t look, it isn’t true” kind of reaction. Instead he sat on the windowsill next to my hospital bed and stared out the window, facing away as he talked to me. Years later he told me that the first time he’d ever cried in front of his friends was that night. Carol and Brian were my Shock and Denial stand-ins.
2. Pain and Guilt — we don’t do guilt so much in my family but my daughter Mary Heather takes on the pain of the world. Like her aunt Carol, she puts on a cheerful outward face, but can be moved to tears over a tiny malady or injustice. When I talked to her, and later when she stayed with me for a week while I was undergoing radiation treatments, she kept up a stiff upper lip and cheerful persona, but I knew she was having a hard time. And she was scared. Mary Heather was my Pain proxy.
3. Anger and Bargaining — my Mother, hands down! Not so much the bargaining part but she OWNED anger. Once I learned that in order to cut out my tumor the surgeons (I had five) would have to discard my nose like some useless accessory, in every conversation with my mom she would raise her voice and reiterate that she didn’t see why they had remove my nose. I explained the reasoning many times but she wasn’t having it. Mom took on Anger with a vengeance. She’s gone now, but I know when there are things that I could get angry about, I don’t need to because she still owns that emotion!
4. Depression, Reflection, Loneliness — my brother Kevin is a sensitive soul. He feels the weight of human suffering in a debilitating way. My illness magnified his anguish and despair. I wish I could take this pain from him. Kevin was my depression delegate.
5. The Upward Turn — my father, a former football coach, and my son Michael took on roles of pragmatic advisor and helper. My dad’s no longer with us but he was always my ‘go to’ when I needed to make career decisions or other big life adjustments. When we talked it was “okay, here’s how it is” or “how are you handling things?” or “just keep your head down” (this was not meant as a directive to hide my face but an eyes on the ball, keep making forward progress kind of way). My son attended every radiation treatment with me and chatted with the doctors, especially the physicist responsible for my radiation settings. With both of them it was always about moving through the difficult parts and keeping the end game in sight. Suck it up. How many times had we heard that from my father growing up? Dad and Michael were my coaches.
6. Reconstruction and Working Through — my sisters Shari and Marta each took a turn traveling to California and accompanying me to my radiation treatments. Quilts were involved. I’d chosen the butterfly as my recovery totem and Marta, a quilter, made me a beautiful butterfly quilt that still adorns my bed today. Her design later appeared in Quilter’s Newsletter. A friend of Shari’s I’d never met made sent me a prayer quilt. An activity that helped me pass time during my treatment period was playing Farmville on Facebook. Shari also played and soon some of her real friends became my Facebook friends and Farmville associates from 3000 miles away. I no longer play but I’m still Facebook friends with these special women from Virginia. Marta, Shari, and my friend and landlord at the time, Robin who had spent the entire, tedious Tumor Board day with me meeting my cancer team, all supported me during the reconstruction process of my life.
7. Acceptance and Hope — Once I got home the day I received my cancer diagnosis, I dealt with the reality of my situation, going into instant planning mode to schedule appointments, call family and colleagues, and change my Sundance flight and hotel reservations. I still went to Park City that year but reduced my trip from 10 days to five in order to get back for my big Tumor Board Day at Stanford, when I met the team who would care for me over my surgery, treatments and coming years. I didn’t think about cancer that first day with a since of loss — of course I didn’t yet know that I would lose my nose and my sense of smell but I did understand that a malignant tumor was growing between my eyes and I wasn’t scared. I’d watched people, including my brother-in-law, go through awful surgeries and cancer treatments so I knew, without a doubt, I would survive. Sometimes during my treatment period, people would post well-meaning but kinda stupid messages on my Facebook wall about what a blessing this or that was (let’s be real, nothing about cancer is a blessing) and my brother-in-law Tim would send me funny, knowing counter messages.

It’s not that I don’t ever experience shock, anger, or depression, I do. But they’re generally isolated to a single incident that invokes the specific appropriate emotional response. Even after I started wearing bandaids to cover the hole in my face, and wore big hats everywhere the first couple of years after my treatments to keep the sun off my radiation-ravaged face, I went out in public as though nothing was different. I was different though. I noticed little things around me every day that I’d stopped paying attention to and tapped back into the creative side of my brain. It took awhile, but my nose coming off led me to the storytelling farm I now call home.

And although I was lucky to receive the grace to get through my cancer ordeal with hope and a sense of adventure, with a family who took on the battle with grief for me, to be honest here’s how I really feel.

#F*CKCANCER

Whoa! I think I just channeled my mother!