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 10th
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.
1 comment:
Thank you for sharing this story! I had been on watch and wait for 5 1/2 years, then found out in December that my FL was growing and changing and that I needed treatment. Tomorrow I will have a PET scan to determine how well the treatment I have had for 2 months is working. I am very grateful for the time I have had (and hope to have in the future)and for the people who share this journey with me, including the healthcare personnel. Life is good!
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