Last night a dear and inspiring friend breathed her last.
Monique Doyle Spencer, metastatic breast cancer patient, died at home as she wished. Please see the post today by our mutual friend, Paul Levy, who sponsored the publication of her book when no publisher would.
All knew the end was near. A couple of weeks ago she happily attended her daughter’s wedding; she had a good Thanksgiving, Paul says, then went rapidly downhill.
Monique’s book is The Courage Muscle: A Chicken’s Guide to Living With Cancer. She says no publisher could imagine a funny book about living with cancer. Paul said he could – in 2004, long before the world at large could think that way. It was so out-of-the-ordinary that Business Week interviewed her, four years after her 2001 diagnosis and three years before my own book talked about laughing with cancer.
Many cancer patients have sought a better word to describe how they view themselves. Well, on Paul’s blog, Monique signed her comments “NASOV”: Neither A Survivor Or Victim.
Here’s the farewell comment I posted this morning on Paul’s post.
___________
Amen. Amen. Amen.
Monique was – and, I imagine, is – an absolute shining light. I met her in April 2007, the very first week I was hospitalized for my cancer treatment, when the odds said I’d not see that Christmas. Not only was she full of joy; she brought me Red Sox stickers (it was Opening Day), which she encouraged me to conceal in naughty places inside my johnny. (For me that’s a different proposition than for her.)
Her fearlessness and humor weren’t limited to cancer. A year later you invited us both to be on a panel at a dinner meeting of the BIDMC board, and her mien was different: she spoke of being treated so poorly by one BID department (being told she’d have to wait weeks) that she went to an outside provider to get the scan promptly – and it showed the very earliest signs of returning metastases. Who knows how much her life was prolonged by that? I just know that she and I agreed that healthcare could sometimes use an upgrade in customer service. And on the personality side, we agreed that we get to define how we face illness.
I talk about e-patients – empowered, engaged in their care, actively involved in researching treatment options. Monique always said she wasn’t one, preferring to happily take her physicians’ advice. Yet, when her latest chemo became Xeloda, with its nasty painful side effect called hand-foot syndrome, the docs had no answers for the pain, and she adopted a henna remedy that husband Michael found online – then posted the instructions on a new blog Xeloda Side Effects, to help others.
After we met, she wrote a guest essay on e-patients.net about why she didn’t see herself as “e”. But you were, honey, you were. You defined the terms of your disease (living with cancer), you went elsewhere when you couldn’t get the scan your doctor said you needed, and you worked heartily with your care team to make the best of the days you had.
On one level, I’ll miss you. On another, fare thee well. Keep in touch.
Love it. Since I first met you through the IHI presentation I have followed you and some of your thoughts. Mainly I am empowered as a nurse, educator and human being to be in charge of my own future. I do not want to let a doctor or an insurance determine my care. I wish I could have known Monique. I plan to buy her book. I did a “Nursing Grand Round” this past year titled “Healthcare and Humor”….I think Monique and I would have loved each other.
I’m sure Monique Doyle Spencer would want me to write to you. I am her sister, Terri. I don’t know if I am writing to one person or to many. Please let me know.
Her thoughts are with me and I hope that I continue to grow because of her. My wish for you is the same. This isn’t a memoriam for Monique. She would want me to ask, “How are you?”