Sunday, November 27, 2011

In memoriam: Monique Doyle Spencer

Monique Doyle Spencer (seen here in July 2010) died peacefully and surrounded by her family last night after a long stint with metastatic breast cancer.  By any measure, she was an extraordinary person, full of ideas, strongly held views, and with a marvelous sense of humor.  I was privileged to be her friend.

I came to know Monique during one of her stays in our hospital.  She mentioned that she had been writing a book about her experience with cancer, but that no one would publish it because it was funny.  Without a pause, I said that we would publish it as a book from our hospital, and the result was The Courage Muscle, A Chicken's Guide to Living with Breast Cancer.  Those title words were chosen carefully because her whole being was about living.

Here is an excerpt from a review of the book that Joseph Breiteneicher posted on Amazon:

It should become a textbook for the medical professions and a guidebook for all who must confront, or support those who do, breast cancer. It is a beautiful book, beautifully written, that sweetly balances gravitas, zaniness and one person's truth. The author's humanity is in full, accessible display for all to see, share and learn from.

Many interviews, like this one at Business Week followed.

Monique signed her comments on this blog with the moniker "NASOV."  When I asked her what it meant, she said, "Neither a survivor nor victim."  She continued, "I have this disease, and I am going to fight it, but I am not a survivor or victim.  I just have a disease.  There are lots of people who are going through worse."

In July of 2010, I was going to California to attend Sci Foo, which promised to be a stimulating conference of scientists and other creative thinkers.  I decided to bring copies of the book to give to the attendees.  I asked if she would mind autographing them.  She was delighted, and not only autographed them, but wrote a message to each person who might pick one of the 100 copies.  Here's an example:

It reads, "Here's to new ideas and fresh thinking at Sci Foo!  This is my new approach for the millions living with cancer."

Three years after the publication of the book, she wrote me a note:

I'm getting all kinds of comments about the Courage Muscle.  "It saved me."  "It was my Bible." "It was the only cancer book that helped me."

Apparently we really helped a lot of people.  Are you sick of me thanking you?

Oh, no, Monique, the thanks goes entirely in the other direction.  Not only from me, but from all whose lives you touched.


beverly said...

I didn't get to know Monique until the last 18 months of her life, but oh, what a lady she was. No matter the harshness of her own existence at the moment, she was always primarily concerned with others. Her book is a treasure - and, as I understand it, she donated the proceeds to BIDMC.
We can honor her by trying to emulate her other-oriented existence in this selfish world.

e-Patient Dave said...

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 about why she didn't she 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.

Pam said...

Thanks for telling us about this, Paul. I don't need it yet, thank God, but you never know. In the meantime, I may know others who do -- or will. I just ordered my copy.

Anonymous said...

She was a great woman. Her memory will live on forever. My best goes to the family.

Marty Sleeper said...

From Facebook:

I was privileged to have Monique's and Michael's children as students when I ws Principal at Runkle. She was an extraordinarily upbeat, courageous and supportive parent and member of the Runkle community. So sorry to hear about her passing.

@GlobeOpinion said...

From Twitter:

Boston Globe Opinion:
We're saddened to read, via @paulflevy, about the death of Monique Doyle Spencer, whose wit and insight enlivened our pages.

Carol, Ed, Sam and Joe said...

Monique was a force of nature, a warm and sparkling one who always made you feel good even when she didn't. We were blessed to have her next door for almost 25 years and we'll miss her forever. Love to Michael, EJ and Katherine.

Geri denterlein said...

Monique was not only a guiding light for those with cancer, but also an influence in the city of Boston where she impressed me so many years ago with her love for our city.
I was fortunate to re-acquaint with her in recent years and so admired her loyalties to her friends.
My condolences to her family.

Beena said...

Wow, I'm glad to hear about this book. I'm sure it will help many women around the globe fighting the disease.

George said...

Neither a Survivor nor a Victim!
Strong message should help us all reposition ourselves.

Jo said...

Monique inspired so many, including me. She will surely be missed in our community. Thank you for this tribute Paul.

Lisa R said...

Being able to laugh with Monique through her book got me through breast cancer. She helped me 'find the funny' right from the first week of diagnoses and it was through her example that I wrote a comedy about breast cancer with two other survivors 'MOMologues: Pink Ribbon Overdose.' I loved her op-ed pieces in the Globe and will treasure all her writing forever. Prayers to her family, gratitude for her gift to all of us.

Stuart said...

Nicely captured, nicely written. There's so much to acknowledge in your post, but in particular I'd like to focus on the extraordinary difference you made by helping get "The Courage Muscle" published. I recall discussing the draft with Monique, her extreme frustration at the issues she faced getting it published --- before she met you. You really did make it happen. I remember buying a stack of copies, hoping that I would never have to give them out. Each time a colleague or friend has been diagnosed with breast cancer, I've sent them the book. Sadly, too many copies have gone out that way.
Thank you for your beautiful words about Monique.