We'll start with this: subependymoma is stable.
Yesterday’s
score: Inoperable brain tumor - 0. Me - 1,000.
Friends have asked if the fact that I have been stable for five years
means that I am “cured”, as is the case with some other malignancies. Well, no, unfortunately. The nature of brain tumor means that while
the tumor remains in my brain, I am at risk for growth, change, bleeding … many
possibilities that would require OMG! WE HAVE TO DO SURGERY RIGHT NOW! WITH A BUTTER KNIFE! IN THE ELEVATOR!!! Or so I’ve learned from Grey’s Anatomy.
When
I was first diagnosed, I wanted it out.
Live or die – let’s do this!
Nobody would operate while I was still walking, talking, driving,
writing. I was told by every elite brain
tumor board on the East Coast, and one on the West, that there was no way to remove
the tumor without an over 50% chance of “unacceptable complications” -
paralysis, loss of sight, speech or, that ultimate complication, death. The tumor is in middle of my brain,
specifically, the ventricles. It is one
of the riskiest surgical locations to access, due to all the “good brain” a
surgeon has to saw through to get there.
Out of the four ventricles, my tumor is in the riskiest intraventricular
location. Of course it is. Because it is MY brain, whose philosophy has
always been play hard or go home.
Therefore,
the tumor stays, and hopefully, plays nice on future MRIs, which I will have as
long as I live. I am not cured, and
there is more medical business in my near future. Tremor (why Starbucks puts
lids on their coffee), cognitive impairment (Here or hear? There or their?
Wait, don’t tell me…), balance issues (no gymnastic Olympic medal in my
future), memory problems (Dear God, have I really lost my car AGAIN??! That’s
twice. Before noon!) continue, so the
neurosurgeon is keeping me on the path of more neuro help, rather than less. I
will see the neurocognitive neurologist at Hopkins (the Neiman Marcus of
neurologists, “The world’s best!”) later this month, who will deal with all the
non-surgical neuro issues. I call her
the “why is my brain full of mashed potatoes?” doctor, which I am sure she
appreciates.
That
said, there is always the very real possibility when I see the neurosurgeon
that he will decide to do surgery on my brain.
Like, in four seconds. I am not
undermining that yesterday was a win, and a BIG one. My path is still … challenging,
naturally. But, you can’t win the Derby, Preakness, and the Belmont all on the same day, so while the
Triple Crown of brain health is still elusive, yesterday was a true victory.
If
you have ever experienced a come-to-Jesus crisis, one fact that holds true is
that you learn who your friends are and how much you are loved. In my 36 years on this earth, I have been
fortunate enough to have a beautiful childhood, in a beautiful home, with
parents that love me, to attend THE BEST COLLEGE EVER (HOKIES!) and a law
school where I studied under renowned (ironically) Health Law professors, and
to have practiced as an attorney with some impressive firms. You – all of you – have touched my life at
some point during this journey, and I am so lucky to know you and to have experienced
your friendship. You, my friends, have
brought me lasagna, sent me flowers, called, texted, sent messages, held my
hand, let me cry, let me talk, or let me be silent. You have uplifted me with your encouraging
words, your support, and your unwavering kindness. And, for that, I am so thankful. I am honored to know all of you, and to have shared
some aspect of our respective lives, as friends. A heartfelt thank you to all of you for your
support, your empathy, your words which make me smile, and cry, at the same
time.
Yesterday
(after the Xanax wore off and before the chocolate martini), I drove straight
from Hopkins to
pick up Ethan from afterschool care and bring him to baseball practice. He was thrilled to see me, since he knew I
had a doctor’s appointment, so he thought his dad was picking him up. I sat on the sidelines and watched, in the
sun, chatting with other parents about nothing of consequence. The coach came over after practice to report
that Ethan was crushing the ball, and that he looks forward to Friday’s
game. He saw the purple bandage from my
IV, which I forgot I still had on, peeking out from the sleeve of my
long-sleeved top, and asked what happened. “Oh, just some blood work.” I
replied, “See you at tomorrow’s game! Maybe another grand slam for Ethan!” As I drove home, I put on my sunglasses, and
for the first time that day, allowed myself to leak silent, happy tears.
Sunday
is Mother’s Day. I have already received
the ultimate gift, another Mother’s Day with my silly, charming, precocious
son. If past years bear repeating, I suspect
that my tangible gifts will include a crayon-drawn card of me on horseback,
yellow-haired, and wearing an orange shirt with a turkey on it. There will also be a tray of burnt blueberry
toaster waffles and a mug of hot water (“You told me never to play with the
coffee maker!”), decorated with hydrangea blossoms pilfered from the neighbor’s
yard.
After
breakfast in bed, I will put on the t-shirt Ethan made for me in kindergarten. I will have to layer it over another larger shirt. The one he made for me in class is an XS,
and, after many washings, is now a skin-tight belly shirt. Blue-paint kindergarten handprints mark the
shirt in an unfortunate location (think breast health exam). Yet, I wear this shirt every Mother’s Day,
and my son revels in the fact that He Made It!
For ME! And I Still Have It! In the afternoon, we will ride bikes in Annapolis and have ice
cream before lunch; a completely ordinary - and perfect – Mother’s Day.
To my friends, I wish you an amazing weekend,
full of ordinary miracles.
1 comment:
So happy to hear this. Hope you had a blessed Mother's Day!
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