The very first
book I read on the subject of breast cancer was a memoir in which the author
talks about her year after diagnosis as a “wash.” She said it didn’t count.
This was her way of accepting her diagnosis and everything that comes with it;
the endless scans, bloodwork, doctor’s appointments, surgeries. I tried to look
at this year like that, but I knew I couldn’t.
How could I when
this was the same year that my son was born? As a new mom with a stage IV
diagnosis, it’s hard to be so dismissive of my time. This year cannot be a wash
because this might be the only year I have left. With that kind of thinking
comes this extreme pressure to live every single moment to the fullest, but
what the hell does that really even mean!? And how the hell do I plan ahead for
my family's future when mine is so uncertain.
Lately it’s
taken everything in me to try to be mindful of the present and just take one
day at a time. I have this persistent anxiety over what I should or should not
be doing, and sometimes it’s crippling. Just this past weekend, I flipped out
over a slight detour, feeling that the half hour I was off course was wasted
time; time that I will never get back. I got so angry and frustrated that I
lashed out at my husband. And then I realized that my reaction was all wrong
and that I was the only one responsible for putting myself in such a bad mood.
I was quick to apologize, he was quick to forgive. That’s how we get through
this together; quick to apologize and quick to forgive so that we can move on
and continue to enjoy what we can.
My husband is an
extremely patient and generous man. I am thankful for him and our strong
relationship every single day. Simultaneously, I am also afraid for him. What
will my death do to him and how will he cope as a single parent to our young
son? It’s a very real concern and yet no one wants to talk about it. Instead
people keep telling me to stay positive and “keep fighting.” Can I share a
secret with you? As grateful as I am for the daily support and outpourings of
love and encouragement, I am so discouraged when I hear things like “you will
beat cancer!” Because the truth is, no, no I won’t. Death is a fact of life and
metastatic disease pretty much guarantees that it will come sooner than
expected. So when I die, does that mean that I just didn’t fight hard enough?
Will I be pegged as a victim rather than a survivor?
We use all these
war metaphors and slap a pretty pink ribbon on just about anything and say that
we’re raising awareness and “fighting” for the cause. But I’m tired of all the
metaphors. I’m even more tired of the rhetoric around early
detection…especially those idiots (yeah, I’m going to call people names now)
who shout things like “save the ta-tas” to someone who has already undergone a
mastectomy and therefore did not get to save her ta tas. This drivel does
nothing to further research for those of us already diagnosed, suffering
through treatment, facing advanced disease.
Despite the ubiquitous pink ribbon, 20% to 30% of people initially
diagnosed with early stage disease will develop metastatic breast cancer. The
cancer that kills. Yes, we have made some serious strides in breast cancer
research and thus treatment options. In the 70s the average survival after a
mets diagnosis was only 18 months. Today, the median survival is three years.
Call me greedy, but I want more! I want longevity but I also want a sustainable
quality of life. I want to grow old with my husband. I want to raise our son
together. Is that really so much to ask for?
The Stones
probably said (sang) it best, you can’t always get what you want. Here’s hoping
that my mets sisters and I can get what we need…. I implore you to please get
involved in a way that can make a real difference. Do some research to know what your dollars go toward when you buy
something marketed with a pink ribbon, or better
yet, read up on MetaVivor and make a donation that will matter: www.metavivor.org.
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