Nicola Mendelsohn

This is another one of those Follicular Lymphoma news stories that a few of you have told me about. I've been thinking about it for a few weeks now.

On February 4 (World Cancer Day), the Sunday Times published a piece by Nicola Mendelsohn.

She is Facebook’s Vice President for Europe, the Middle East, and Africa – someone with a loud voice when it comes to spreading the word about something. In the piece, she describes her experiences as a Follicular Lymphoma patient.

I know that story.

As many of you know, I was diagnosed with Follicular Lymphoma a little over 10 years ago, and reading about her experiences was like reliving my own past.

She writes, “It was a terrible shock. I didn’t even feel ill….So when the doctor told me, I just kept thinking: ‘But I’m fit. I’m young’.”

Yup. As many of us know, lots of FL patients have no symptoms when they are diagnosed. At most, maybe a lump that won’t go away, that gets worrisome after a few weeks or months. Like Mendelsohn, I found a lump near my hip bone. And like her, I was in the best shape of my life at the time.

And like Mendelsohn, I was young – 40 years old (she was 46) – diagnosed with a disease that usually gets diagnosed in people in their 60s.

“[My husband Jon and I] gathered our four children — aged 13-20 — together and sat them down to explain my condition. Zac is our youngest and his first question was: ‘Are you going to die?’ That’s always the thought that comes into your head when you hear the word ‘cancer’. It is not a conversation I could ever have imagined having with them, not even in my worst nightmares, until it hit me in the face. It was the hardest moment of my life.”

Yup to that one, too. My kids were younger than Mendelsohn’s – 6, 8, and 10 – but telling them was also the hardest thing I’ve ever had to do in my life. Mine didn’t ask about death. They didn’t say anything. But I had my arms around my boys, and I felt my oldest child’s body tense up as I said the word “cancer.” It relaxed only when I mentioned the name Jon Lester, a pitcher for the Boston Red Sox, his favorite team, who had come back from aggressive Lymphoma a few months before.

There are other similarities between us, too. For both of us, our spouses have been our greatest gift. We both chose to watch and wait, holding off on treatment until symptoms get worse.  We are both able to enjoy a good quality of life. We both quickly found how important it is to have a community of people who understand what we’re going through (for Mendelsohn, that came, naturally, through a Facebook group, one that I have also been a member of for a while).

But the thing that connected with me most was the title of her article:

“My Life Sentence.”

Follicular Lymphoma is, as we all know, incurable.

About a month ago, I celebrated the 10^th anniversary of my diagnosis. When I was diagnosed, I read that the median survival rate was 8-10 years for Follicular Lymphoma patients. So 10 years was always kind of a special milestone for me. It was always something to reach for.

Many cancer patients hit a 10 year anniversary, and it’s a pretty clear sign that the cancer isn’t coming back. Not so much with an incurable cancer like Follicular Lymphoma.

10 years with FL requires a different kind of celebration. It’s not so much celebrating the day of the diagnosis.

For me, that day was about celebrating the 3,653 days since my diagnosis.

And it was celebrating all of the days that are to follow.

I guess that’s two more ways that I see my story in Mendelsohn’s.

The first is our shared desire to use our diagnosis to help others. For Mendelsohn, that means using the power of Facebook and its communities to bring people together for education and inspiration. For me, it’s the same thing, using my blog to listen, respond, help, and inspire.

The second is our attitude.

“Sometimes, when people receive a diagnosis like this, it can really change them: who they are, what they stand for, the choices they make. That hasn’t really happened to me. I’m on a different path now, but I’ve always been an optimist — someone who cherishes life and is grateful for what I’ve been given. Now I just feel even more grateful.”

It can be hard some days to feel optimistic and grateful. And that’s OK. That’s one of the things that online communities can be good for – to get you through the hard days.

But other days, you wake up and put your feet on the floor and try to be grateful for day number 3,654. You hug your spouse and kids a little tighter. You try to find ways to make your small corner of the world a better place. You cherish life.

So thank you, Nicola Mendelsohn, for sharing your story. For being a model for how to face adversity. For having a voice and using it to help us. I’m sorry you had to join this crappy club. But I’m really glad to have you here.