Peace. It does not mean to be in a place where there is no
noise, trouble, or hard work. It means to be in the midst of those things
and still be calm in your heart.
Now, let me be clear, this is one of those concepts to which I
aspire, and I am far, far away from becoming a master of it. In fact, I need think back only to yesterday morning
to realize my distance from this Zen-like state – Annabel had taken a tumble
down a few steps on the back porch and, not hurt but still shocked, was
hysterical. Cue Teddy, who decided it
was just the right time to have a mental breakdown about the tiny soccer ball that
was still missing from his new Soccer Guys set (we eventually found it under
our bed). There was lots of noise, and
trust me, no calm in my heart.
Anyways, I think I was originally drawn to this quote because I am
one of those quintessential first-child, type-A,
far-too-serious-about-everything personalities (even if I have you fooled), so
I’ve always had to do a bit of calming myself down over small issues. And when I first found the sign, I was in the middle of a project at my old job that had me working long hours, while very pregnant with Annabel, with a broken rib.
But now, like so many things, this quote has taken on a whole
new meaning, and I was reminded of it yesterday when the genetics counselor
from Dana Farber called me back with the results to the genetic test they had
taken for two main breast cancer genes.
For a bit of context, one of the many meetings we had on my first
day at Dana Farber over one week ago was with a genetics counselor. She asked me all sorts of questions about my
family history (even drew one of those little family trees – males were squares
and females were circles) and then gave us lots, and I mean, lots, of information about genetic
tests, their costs, their implications.
To be honest, it was one of our last appointments of the day and I felt
pretty dazed at that point. I wasn’t
following much of what she said and I just wanted to go home.
One thing I did understand from the meeting was that I needed a
blood sample taken so that the one lab in the world with a patent on this
process (Myriad Genetics out in Utah) could test to see if I carried the “BRCA1”
or “BRCA2” gene. Again, I try to stay as
far away as I can from the clinical part of this journey (although that’s going
to be harder and harder in the upcoming weeks) so I don’t have much to say
about this test or these genes, except that I understand that if I tested
positive for either one of the genes, it would mean I was at increased risk for
cancer in my other breast and other types of cancer (especially ovarian cancer)
in my future. Even worse, it would mean
women related to me could also carry the gene, and that was a can of worms I
sure didn’t want to have to open.
As has become the norm when I am returning a doctor’s call these
days, my hands shook and my legs felt weak as my Mom and I headed outside to
the driveway of the vacation house to return the genetic lady’s call.
Negative, Negative, she told me. I don’t carry either gene. But as I have learned, it’s never that simple
anymore. The test that my insurance
company would cover could tell us with 95% certainty that I didn’t carry either
the BRCA1 or BRCA2 gene. To be 100%
sure, Myriad would need to run additional tests (called the “BART” test, again,
spelling questionable) and that would cost $700. My insurance company had already explained to
me (in a 45 minute call that I have not yet recounted to you) that it would not
cover this additional testing (but they will cover a $500 wig!). I would have hemmed and hawed but my Mom wanted
to be 100% sure so she gave a few important women in her life an early
Christmas gift – $700 to be sure that the cancer-risk gene was not lurking in
that remaining 5%.
You’d think it’d be simple from there, right? Unfortunately, it isn’t. I’m still 32 with breast cancer and no family
history, so the genetics lady told me about other tests that we could run to
see if I carry any other gene that could lead to my condition. By now, Brian had joined the party ’round the
speaker phone. Again, I found myself
lost in abbreviations and percentages. And
that kicked-in-the-gut nauseous feeling returned when the genetics counselor
repeated what she had said in our last meeting (but I think I chose to block
from my memory) which was that if I carry certain of these other genes, it
could mean that our children are at increased risks of cancer, even childhood
ones. That is a thought Brian and I
honestly cannot bear at this stage so we decided that I would get well first
then we would talk again about further genetics testing. Noise,
trouble, hard work. And no calm in my
heart.
After the call, we went back inside to prepare lunch. Brian’s parents had come down to Falmouth for
the day and it was such a pleasure to sit outside under the umbrella on one of
the most beautiful days of the summer and enjoy some hot dogs and
hamburgers. I calmed, and I think Brian
did too. Thank goodness for family.
Well, I began this entry when everyone was asleep, but now Annabel
has finished her bottle, lost interest in Sesame Street, and is dancing around me, trying to grab my lap top and
climb on the back of the couch. We have
a great day planned so I’ll wrap this up.
I have realized in the last couple days that I have made strides,
albeit very small ones, towards the goal in the quote. I have come closer to accepting that in the
next year, or two, or twenty, this cancer is going to bring with it lots of
noise, and trouble, and hard work. But
I’ve also started to believe that in the midst of all of that, I will find calm
and I will feel peace. I’ll still enjoy
lunches outside with my family even after confusing calls with genetics
counselors. And I’ll still have my
little girl grabbing at my computer as I try to make sense of my life. In the end, that’s just the kind of calm I
need.
No comments:
Post a Comment