Face Forward: Still, I had to persist

Michele Howe Clarke’s story:
My journey was one from living in a wonderful myth of perfection, as an investment banker, mother of a six-year-old girl, with a husband, living the high life. Then it was shattered like Humpty Dumpty, by an aggressive head and neck cancer. It was a total surprise. I had this pain behind my ear, and went to the dentist. He couldn’t see it, and thought there was nothing there, so he just told me, “Some people just live with pain.”

I got pregnant, and had my daughter. Then the pain became intense. I persisted in saying, “Something’s up here.” Finally, my dentist said to see a head and neck specialist, and I did. Still, I had to persist with him too, telling him something was there, though he couldn’t see or feel anything: “No, really! There’s something going on.”

I had a needle biopsy, and was told to have a happy Christmas, as there was no way I had cancer. It was a series of unfortunate events, as it was such an unusual cancer, not in the forefront of people’s minds: adenoid cystic carcinoma of my salivary gland, so the pain was reflecting in my dental area.

I went in for an operation, and they found it was a cancerous malignancy growing into the facial nerve. I had to sacrific all the facial nerves on my right side just for a chance to live. The statistics said I wouldn’t have very long.

The surgeon came in and laid a hand on my calf with family there, and said, “I’d understand if you’d choose death instead of disfigurement.” I felt an innate resource surge in me, as I wanted to dance more with this life.

I knew I’d get on the team of playing to live. Here’s an important lesson: My surgeon told me to choose death. Then when I went into his office after the operation, with a shunt, staples, and sutures in me, I had questions. But he didn’t have time for questions; it was very adversarial. Then he handed me a scrip for a whole vat of oxycontin pills, more than 300 of them. It’s like he was saying, “This is gonna suck, so go get numb.”

This was very unusual for me, but I owned my authentic No. I said he is NOT the doctor for me. I changed course in the middle of the head and neck diagnosis. I want to shout out to everyone going through a serious disease: It’s so important that you speak up if it doesn’t feel right. You are the key person in the medical team, A1, so ask what you need. If you don’t, no one can help you. If it doesn’t feel right, ask for alternatives.

For two weeks, I asked anyone I knew for a good head and neck surgeon in New York. I landed with Dr. Peter Costantino, because his team welcomes you in as if you are a person with a future, with life for you yet. He told me, “Honey, I want to get you to your daughter’s wedding.” [Sage was six years old.] I was spoken to in the language of hope, which we all deserve. These are the things we’re allowed to ask for. You can change course if you know there’s a better way for you. For you. There are other alternatives in the medical system, since for every doctor you have, there are 100 more.

My daughter is eight and a half now.

Then I had a baby boy, almost two years old now. I trusted my body, and had a wonderful healthy son! It’s OK to make decisions for yourself.

Early on in my cancer I was told something really important about the statistics: You are not an average, not a statistic; you’re an individual with a 0% or 100% chance. You’re on the field alone, with no one to compare yourself to. There’s no way to measure an average as an individual. The average isn’t true; what’s true is what you say about you.

You can live until you die no matter what you’re facing, or you can just live until you die.

See Michele Howe Clarke's book, Face Forward: Meeting Challenges Head on in Times of Trouble.  Thanks to Linda Smith of the Ascot Media Group for arranging the interview.