Rainbow Sparkle Party
By Matt Rushford
For the most part, I have moved past the initial phases of shock, horror, abject
grief, soul-crushing loss, and perpetual sadness of our cancer journey. It’s still a
marathon of challenges interspersed with moments of truly high octane shittiness,
but at the same time I am moving slowly into Resolve. Nevertheless, there are
moments when I am tapped on the shoulder by Cancer Sid Caesar and get a steamy
turd pie in the face, like this morning we are relaxing in the living room and Storm
has absent-mindedly extended his leg over to me and I am absent-mindedly
stroking his foot as we all chat. And in a moment I realize how strange his feet
feel.
“Your feet are so soft and puffy. Have you noticed?”
“Yeah, it’s because I have not been barefoot all summer. Or even upright a lot of
it.”
And I think about Storm, who ditches his shoes (eschews them?) sometime in late
March and goes barefoot until about the beginning of November, unless he is
wearing his baseball cleats. The bottoms of his feet become as dense and dark as
thick leather. Holding these delicate, smooth appendages in my hands brought the
reality of our surreal summer abruptly into a bittersweet focus.
And yet I am perpetually amazed at how Storm moves through this new life with
such aplomb and humor. He barely makes a noise when being poked, punctured, or
prodded, allowing this body that he had always guarded so jealously, shrinking
often from a lot of the typically physical nature of his family’s exchanges (we hug
a lot, on both sides of the family), to be violated in so many ways so often. He
shows up for his clinic visits with a warm personality and a grateful attitude. The
nurses call him “a dream patient”.
And while the nurses and doctors all go to great lengths to make it as easy as
possible for him, there are certain inescapable horrors. The last lumbar puncture
was a worse experience for him than he will probably ever fully let us know. I
know that it was very, very bad. And of course induction, the first month, was
indescribable hell, even though part of it was the abject absence of any time to
adjust or adapt to the diagnosis before plunging into full-on blitzkrieg.
So, when he was informed that in a few months he would enter a phase called
“Delayed Intensification” which would be similar to Induction, I know that he held
onto both the term and the description and ruminated it in his mind like you might
fiddle with an unknown object in your pocket.
“What’s up with Delayed Intensification?” he asked me today as we walked from
the hospital back to the car, deep in the shadowy bowels of the parking garage.
“What do you mean?”
“Well, it’s a pretty intimidating term, isn’t it? We’re going to actually intensify this
for you, but we’re also going to delay it, so you have plenty of time to think about
it.” he said.
“Oh. I see what you mean.” I replied.
“Right? Or, they could just NOT be dirtbags, and just call it a…Rainbow Sparkle
Party…”
Me, laughing so hard I drop my keys: “Rainbow Sparkle Party?”
“Yeah, I mean who doesn’t want to go to a Rainbow Sparkle Party?”
At which point we entertained ourselves coming up with more attractive names for
the treatment phases.
Me: “Free Buffalo Wings!”
Him: “Get 50% off if you spend more than 80 dollars!”
Me: “Less Puncturing of Your Body Than You Might Think!”
Him: “Blanket of Kittens!”
And on and on. Our laughter filled the car as we drove to EcoBean for some healthy
post-chemo smoothies.
No one knows more than he how deadly serious his situation is, but that is exactly
what gives him the ultimate right to find the humor in it. It is not dismissive of the
gravity of his condition, but rather it is a defiance of its right to own him; his body
may be up for rent, but his mind is his own, and he proudly announces that every
day.
He is on his way down, and will probably need a transfusion tomorrow. For a
time, he will be immune-compromised and semi-bedridden, renting out his body
once more to cancer, surrendering the town to save the city. Then he will be back,
and all along the way, showing me every day what it means to be StormStrong.
About Matt Rushford
Dr. Matt Rushford is a family chiropractor, author and professor of Holistic Health at Northern Vermont University. He is also Executive Director of the StormStrong Foundation, the nation's leading pediatric cancer charity dedicated wholly to reducing the incidence of childhood cancer. You can make a donation at www.stormstrongfoundation.org or find him at www.mattrushford.com.
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