There’s no other way around it. I just have to say it. I
feel like I’m in an addiction support group, and it’s my turn to speak in the
circle. Deep breath…here we go...
My name is Jill, and I love baseball.
Not just any baseball, mind you. I don’t care about the
Texas Rangers, and when I lived in Michigan, I didn’t care about the Detroit
Tigers. In fact, I can’t see the appeal of a live professional game—dealing
with traffic and parking and crowds, just so I can sit in a cramped
stadium seat and sweat in the hot sun to watch players too far away to see. And baseball on TV?
Meh. Kinda boring.
No, the baseball I’m talking about, the baseball I love, takes
place on city fields with family-run concession stands and sometimes sketchy
restrooms (the “sometimes” doesn’t refer to “sketchy”—they’re always
sketchy—but to the existence of the restrooms themselves. Flushing toilets are
not a given in my baseball world). The baseball I love is plain ole rec league
youth baseball, specifically the 12U division my son Luke plays in.
This summer's All-Star team and the best coaches in Texas.
Although, to be accurate, Luke isn't Luke at baseball. A year
ago, when Luke moved up to 12U and met his team, one of his teammates introduced
himself as “Laken, like bacon” (people tended to think his name was Lincoln).
All Luke heard was Bacon, and he decided then and there that if Laken could be
Bacon, he could be a breakfast food, too. So he told his team to call him
Waffles, and Waffles he has been ever since. Like, all the time. Some of his
coaches don’t even know his name is Luke. At one game, the head coach made the
mistake of listing him as Luke on the batting line-up, and the assistant coach who
was managing the dugout had to ask who that was. I'm telling you, he's Waffles. He steps up to bat, and everyone yells “Getcha a good one, Waffles” or “Head on
the ball, Waffles.” When he makes a good play, it’s “Good hustle, Waffles!”,
and if he misses a grounder, his coach roars “WAFFles! You gotta get DIRTY on
those!”
Baseball is a community of nicknames, and if my son is
Waffles, it stands to reason I am Wafflemaker. Because I’m obsessed with
baseball, I love even the practices and try to attend as many as possible. I
set up camp behind the backstop with my canvas chair, water jug, Diet Coke, and Joey (who also
loves baseball—he gets all panty and excited when Luke grabs his bag for
practice) and soak in all the baseball goodness as the sun sets over the field.
I’m often the only mom there, so when a foul ball is hit out of the field, the
players yell “Wafflemaker!” and I chase down the ball and attempt to throw it
in without embarrassing myself (mostly unsuccessfully). Then I sit back down in
my chair and listen/watch/process all the stuff the coaches are teaching the
boys.
I am not a sporty gal, so my experience with baseball/softball
was limited to watching my dad and brothers play in for-fun leagues through the
city or church. It turns out there’s a lot more to the game than just swinging
a bat and hoping for the best. Did you know you can aim where you hit the ball?
I didn’t. And when fielding, sometimes players have to move from their positions—in fact,
there are lots of times they have to move. It’s not cool to just stand there and
hopefully catch the ball when it comes to you. Good fielders have to cover and backup and
bounce and crash. And probably lots of other moves I didn’t pick up on.
One of the key things the coaches focused on this season was
stealing bases. I learned that stealing is a huge strategy for getting
players around the diamond, especially in 12U when pitching can be iffy and not
every ball gets caught. The coaches spent a lot of time teaching the boys the
finer points of stealing bases—things like leading off at just the right
distance so you can make it back to the base if the pitcher tries to pick you
off. (The optimal lead-off is the exact distance it will take you to throw
yourself facedown back at the base, arms extended over your head and fingertips grazing the bag. That way you've gone as far as you can go while it's still possible to get back to the base. See how much I learned?) And sliding...oh the sliding. I don't think anyone in the whole history of the world has done anything with more gusto than a twelve year old boy sliding to a base.
It always means getting dirty, and sometimes, it even means getting hurt. Luckily it didn’t happen very often, but occasionally an ankle
would get turned or a hand stepped on or an arm thwacked with the ball.
Sometimes there were tears, though at this age, not so many. After determining
no permanent damage had been done, the coaches would brush the player off, pat him
on the back, and leave him on his base. Then they’d make him do it again.
Sounds brutal, right? As a certified girly girl, I can’t
imagine diving face down in the dirt or launching myself on my hip to slide
several feet to safety. But these boys did it over and over again, and it paid
off. Come game time, our team could steal bases with the best of ‘em. It never
failed to send my heart a-racing when one of our players crept into his lead, then
either stole to the next base or dived back to the one he just left. Dust would
fly, covering the player in dirt and making it impossible to see if the
defender had made the tag. We parents would sit forward in our camp chairs,
waiting for the official to make the call--either a clenched fist for “out”
or arms sweeping outward for “safe.”
If it was an out, we’d all groan in disappointment, then clap as the slumped-shouldered player
trotted back to the dugout. But most of the time our
boys were safe, thanks to base coaches who knew what they were doing and the
boys’ willingness to act without question. Declared safe, our players would stand
up like they’d been taught, brush at the dirt that would never completely wash
out of their pants, then glance at the fans and grin from ear to ear. Safe is a
pretty great feeling.
Safe. That’s how I feel now.
One of the hardest things I’ve had to deal with since my diagnosis is the loss of control over my life. Every two to three months, I get
scans to see the status of the cancer, and the results of those scans determine
what treatment, if any, I’ll have to do. It’s the treatment, not the cancer,
that makes me sick, so I dread getting the scans as they open up the possibility
that I will have to do another round of immunotherapy. This makes planning
ahead really hard. I don’t know what I’ll be able to do beyond each three month
mark, so things like vacations or show tickets or anything that has to be
reserved in advance feels like a crapshoot. No matter how amazing my plans,
one new spot on a scan will cancel them. In terms of priority, cancer treatment
will always win.
This makes me almost not want to plan anything because I
don’t know if it will be possible. But at the same time, I don’t want to let this
stupid disease rob me of my life while I’m still living it. So I take a leap of
faith and buy those tickets or let myself get excited about spending time at
Bear Lake with my extended family. I feel like a little leaguer leading off to
steal the next base. I just have to go for it.
But then it comes time for a scan, and I’m the player lying
in the dirt, waiting for the official’s call. I wrote in my last post that I had radiation surgery (SRS)
on two new brain lesions back in May. These new lesions were not good news--even though we zapped them with radiation, the fact that they popped
up meant I still have live melanoma cells swimming around in my system,
even after the immunotherapy. So I
went to my oncologist appointment earlier this month with a lot of trepidation.
I was very afraid he was going to tell me to buckle up for more chemo treatment.
Summer plans kaput.
First we went over my blood work. Ever since January, when we had to stop the immunotherapy treatments because my liver flared up, I've been getting weekly blood draws to check the status of my liver. It's still not normal, but for the last month, it's held strong at "almost-normal" without the help of steroids. That's good.
Next we looked at the results from my latest abdominal CT,
which I’d had done the week before. Brad and I exchanged a hopeful smile when
we learned the liver lesions are still gone. This is the same news we
got back in April, and it was a relief to know nothing had changed.
But there
was still the matter of the brain lesions.
Dr. C went over the information on his computer screen. “Two
more spots radiated,” he said, screwing up his mouth in thought. “And when is your
next brain MRI?”
“End of August.” I see a different doctor for my brain
lesions, and Dr. S’s office hadn’t scheduled an exact date for it yet.
Dr. C nodded, contemplating. “Hmmm.” More contemplation. “Let’s
do this. I don’t want to do any immunotherapy unless it’s absolutely necessary,
because I don’t know what it’ll do to your liver again. Come see me
after your next MRI. There’s a chance there will be nothing new, and if that’s
the case, we can continue as we are, just watching.”
In my mind, I saw the baseball official sweep his arms to
the sides. Safe.
For now.
“However,” Dr. C said as I mentally dusted myself off and
eyed the next base, “if there are new spots on the next MRI, we’re going to
have to consider some sort of treatment. We can’t do the same combination of
drugs we did before, but we can talk about some other options. If this pattern
of new lesions continues, we’ll have to do something.”
He then went on to talk about a possible BRAF mutation, and
how I might be positive even though my original biopsy said negative because
the tissue sample was so small. If I have the BRAF mutation, there are more
treatment options available, but unfortunately (fortunately?) I don’t have melanoma
cells available to biopsy—they can’t really collect tissue from my brain. And
as long as my brain lesions aren’t under control, I couldn’t do BRAF treatments
anyway. So…I don’t know what the plan would be. My plan is to pray
for no new lesions. That would be the equivalent of a big, fat homerun.
But for now, for the next six weeks, I’m safe. My foot is
firmly on the bag, and until I have to lead off and sprint for the next base, I’m
just going to stand here, grinning from ear to ear like the successful little
stealer I am. I’ve managed to advance a few bases, and I bear the marks of
my time in the dirt: my skin and hair are splotched white from my immune system
attacking the melanin, and I have a couple of bald spots from radiation. But no
player worth his—or her—salt comes away from a game without getting dirty. I
don’t mind a few stains.
Because I’m safe. Safe to laze on a beach, stay up way too
late playing cards, and boat with my favorite people in the world. Safe to go
to the show I’ve been looking forward to and walk hand-in-hand with my husband,
breathing in the crisp combined scents of trees and water. Safe to feel nothing
worse than the kind of tired that comes from a day playing at the lake. Safe to
do all the things that make me the happiest.
Safe.
It’s a pretty great feeling.
