Running Update:
1/3/2020
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Run
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5.0 mi
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48:22
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1/4/2020
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Swim
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1500.0 yd
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||
1/5/2020
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Run
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9.1 mi
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1:32:53
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1/6/2020
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Swim
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1500.0 yd
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||
1/8/2020
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Run
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5.0 mi
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46:25
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1/10/2020
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Run
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5.0 mi
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49:14
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1/11/2020
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Swim
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1900.0 yd
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||
1/12/2020
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Run
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13.2 mi
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2:14:22
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1/13/2020
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Swim
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1300.0 yd
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||
1/15/2020
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Run
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5.1 mi
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49:53
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|
1/17/2020
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Run
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5.0 mi
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48:39
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1/18/2020
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Swim
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2000.0 yd
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||
1/19/2020
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Run
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9.1 mi
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1:34:00
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1/20/2020
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Swim
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2000.0 yd
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||
1/22/2020
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Run
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5.0 mi
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49:59
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|
1/24/2020
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Run
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5.0 mi
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45:30
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1/26/2020
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Run
|
10.3 mi
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1:42:05
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1/27/2020
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Swim
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2100.0 yd
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||
1/29/2020
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Run
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7.6 mi
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1:13:46
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1/31/2020
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Run
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5.0 mi
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45:21
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2/1/2020
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Swim
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2100.0 yd
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||
2/2/2020
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Run
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9.1 mi
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1:28:52
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2/3/2020
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Swim
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2100.0 yd
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||
2/5/2020
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Run
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5.0 mi
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48:00
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2/7/2020
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Run
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5.0 mi
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46:47
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2/8/2020
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Swim
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2100.0 yd
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||
2/9/2020
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Run
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9.1 mi
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1:30:22
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2/10/2020
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Swim
|
2100.0 yd
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Happy
2020! My training is already off to a
good start for the year, and believe it or not our first race of 2020 is only
about a month away. I’m starting the racing
season with the NYC Half Marathon, as usual—this will be my sixth time running this
event.
Here is my
full schedule for the year:
NYC
Half Marathon—Sunday, March 15th
Vermont
City Marathon—Sunday, May 24th
New
Haven Road Race Half Marathon—Monday, September 7th
New
York City Marathon, 50th Anniversary—Sunday, November 1st
The full
New York Marathon in November will be a first for me. I hadn’t applied before because the race is
just so big—over 50,000 runners, compared with about 30,000 in each the Boston
and Marine Corps Marathons. In larger
marathons the runners start in “waves” of smaller groups with a short time
delay between each group, but this means a long wait at the starting line for
your group to be released. Despite
running in waves, with that many people you simply have less room to move. Since I’m not an elite runner I start in the
middle of a wave and stay surrounded by other runners for most of the
race. Lots of jostling and
elbow-bumping! However, I was inspired
to register this year while watching last fall’s race and hearing that it would
be the marathon’s 50th anniversary in 2020.
Since I turned 50 earlier this year, I figured it would be fitting for
this 50-year-old to run a 50-year-old marathon!
Speaking
of birthdays, I celebrated mine with Todd in New York City with dinner and a
play.
 |
| "Harry Potter and the Cursed Child" (Yes, I am a total nerd! But a happy nerd.) |
Jane Update:
After a
bumpy 2019, so far, so good in 2020. This
week we had a follow up with the Pediatric Dermatologist who has been managing
the persistent nail infections in Jane’s toe—a side effect of selumetinib—and I
am thrilled to announce that finally, almost one full year after they started, the infections are gone! The trick was a prolonged course of
doxycycline, which is an antibiotic and anti-inflammatory. Just to be on the safe side the doctor is
keeping Jane on a lower dose of doxycycline for another month before deciding
whether to stop it completely.
Now that
her toes are healed, Jane can wear her new kicks, courtesy of the Children’s
Tumor Foundation! These were a thank you
gift from CTF for our fund-raising last year.
NF’s “colors” are blue and green, hence the design.
Our next
trip back to NIH will be at the end of March.
NF Update:
It was
founded in 2010 in Wisconsin by Tracy Wirtanen when her 4 year-old son was
diagnosed with NF. (Go, NF Moms!) Littlest Tumor Foundation is “a team of
action-driven dreamers inspiring compassion, advancing research, empowering
families, and raising awareness for neurofibromatosis (NF).”
I learned that back in 2010 the founder got to meet with
President Obama and talk about NF! Here
is a photo and the transcript from the meeting:
Tracy Wirtanen: Hi. Thank you so much,
Mr. President, for having us here. I want to thank you. I just have a comment.
My son, Sammy, who was here, is seven and he has neurofibromatosis. I don’t
know, have you ever heard of it?
THE PRESIDENT: You know, I’ve heard of it. But you
should describe for us what that means.
TW: It means that he had a spontaneous mutation on his
chromosome. And he was diagnosed two and a half years ago. And it just
basically means your tumor suppressor doesn’t work properly, so every nerve
cell has the potential of becoming a tumor.
THE PRESIDENT: Which is pretty nerve-wracking for mom.
TW: Oh, it’s unbelievable. And there’s a wide
spectrum, so some people end up with minor complications but others have
serious problems. And he’s already had surgeries and things of that nature. So
I just want to thank you and the Secretary and congressmen and senators,
because it’s life changing for a parent.
THE PRESIDENT: Well, Sammy looks terrific. I saw him
running around here.
TW: He is terrific.
THE PRESIDENT: And I’m just glad to give you peace of
mind. Look, people ask me sort of how do I stay calm in my job. The reason I
stay calm in my job is that every night at six-thirty, no matter how busy I am,
I go upstairs -- I’ve got a very short commute -- (laughter) -- and I go
upstairs and I have dinner with my wife and my daughters. And as long as
they’re doing good, as long as they’re healthy and happy and running around and
telling me stories about the crazy things that happened at school today, then
there’s a certain baseline that just gives you that sense, well, I can take
anything, right?
Now, the flipside is when Malia or Sasha get a
sniffle, or an ear infection, or a scrape, or a bruise, I’m over there just
miserable. And I still remember Sasha, when she was three months old, one night
she just wasn’t crying right. As a parent, you start recognizing, that’s not
how she cries. She wasn’t hungry, it wasn’t a diaper change. Something was
going on.
So we called our pediatrician, and he said, “Well, why
don’t you bring her down?” And this was in the middle of the night. This is
like one o’clock in the morning. And he was willing to see her, and he pressed
on top of her head, and he said, “You know, she may have meningitis; I want you
to go to the emergency room.”
And it turned out she had meningitis, and she had to get
a spinal tap, and they had to keep her there for three or four days. And the
doctor was talking about if this didn’t -- if her temperature didn’t come down
and if we didn’t solve this, she could have permanent damage to her hearing or
other effects.
But I still remember that feeling of just desperation,
watching the nurse take her away to provide treatment for her. But I was
thinking, what if I hadn’t had insurance? What if I was looking at my bank
account and I didn’t have the money to cover her? How would I be able to face
my wife, and how would I be able to look in the mirror if I didn’t feel like I
could somehow make sure they were okay?
And that’s what this is about, ultimately. I mean,
we’ve got to make sure that health care -- our health care dollars are used
smartly. We’ve got to make the system work better for consumers. We’ve got to
make it more responsive. But ultimately, the thing that’s most important is,
we’ve just got to give people some basic peace of mind. And I’m just so glad
that I’m able to stand here before you and hear these stories, and hopefully it
gives you a little more peace of mind. (Applause.)
So, all right, well, thank you, everybody. Appreciate
you. And if anybody else has any questions, they can come up and we can chat in
the shade here. (Laughter.) Because I don’t have to go right away, and maybe we
can -- these guys will take some pictures. So thank you.
I was so
excited when I first discovered that President Obama knew about NF that
immediately shared the story with my friend, Dara. She said, “I bet Michelle told him about Jane”,
alluding to the letter that Jane received from the First Lady back in 2016 :)
Thinking
about Barack and Michelle Obama makes me think of politics, something I don’t
usually include in my blog. But I have strong
enough feelings regarding the recent publication of the controversial novel American Dirt by Jeanine Cummins that I
thought I’d dip my toe in.
American Dirt is a
story of a Mexican woman and her son fleeing violence in their home to become
an undocumented immigrants in United States.
It has been touted by some as “the
Grapes of Wrath for our time”. However,
it was written by a white American woman without any Mexican heritage or personal
connection to Mexico. I’m on the side of
its critics, who have condemned it as inaccurate, called it cultural
appropriation, and even described it as “trauma porn”. It is a much more egregious example of
appropriation than the “inspiration porn” of the book Wonder, about which I’ve written. Ever since I read Wonder I’ve been more sensitive to the argument over whether there
should be limits to what a novelist can write about. This multifaceted and nuanced debate is
beyond the scope of this blog, but I confess I didn’t ever think enough about
it until I felt punched in the gut by Wonder. It took me a while to figure out why I felt
that way, but it came down to it’s not
her story to tell and more importantly, it’s not her story to profit from.
Helen Update!
On a much
brighter note: Jane’s older sister,
Helen, is a high school senior this year, and just learned that she was
accepted Early Decision at Mount Holyoke College. We are so proud of her and so happy for her! MHC Class of 2024, here she comes!
