This fall, my friends and family have populated the calendar with a slew of brand new, joyful, champagne-sipping sorts of anniversaries: First came Tricia and Chris (Sept. 29) , then Marilla and Dave (Oct. 12), and last but certainly not least Christy and Greg (Nov. 3).
Anniversaries come in different flavors. Last fall, it was my little three-girl clan that was racking up anniversaries…ones that were way more Jack Daniels than Veuve Clicquot. There was August 24th (the day of the seizure). Then September 14 (the day I got “the call”). Then October 9 (the day I swerved into the parking lot of a Comfort Inn and finally told her the impossible news that control-freak me had been keeping from her for weeks, ridiculously hoping I could somehow solve it without her ever knowing: “baby, we have a brain tumor.”)
And then there was today. The day the surgeon took it out. Took it all out.
As a dear friend said to me last night, what a difference a year makes. Tonight will be a champagne night. (Yes, she’s only 13. I dare you to have a problem with that.)
While I want to celebrate the goodness of the day and all that has come after it (four completely “clean” MRIs during four separate visits with the amazing people at the Jimmy Fund Brain Tumor Clinic at Dana Farber), I don’t want to forget or minimize what brought us to where we are today. Remembering the tough stuff makes the sweet stuff sweeter.
So here is the story of what led us to tonight’s champagne. You take care, and go cherish your day. We sure will.
The Last Friday of Summer
Friday morning. 6:45. I’m halfway down the stairs and halfway done my coffee. Ethiopian Yirgacheffe—yum. I plan the day as the brew lifts my fog. Sneak in my run before she wakes? I should; it’s the last Friday of summer, and the weekend ahead will be a dizzying seventh-grade shopping spree. Pens, paper, not-too-high-high-heels—we need to negotiate and procure so much.
The rattling refocuses me. No, “rattling” isn’t right. Well, maybe it is at first, but it quickly revs into the “washing-machine-furiously-spinning-out-of-control-gaining-speed-every-second” zone. Urgent. Dangerous. Not at all OK. To a mechanically inept single mom who assumes all malfunctioning appliances will spontaneously combust, this noise screams “EVACUATE NOW.”
Evacuation is not an option for two impossible reasons: first, the heinous noise emanates not from the laundry room but from my daughter’s bedroom. Second, my intuition says the sound’s source isn’t an out-of-whack appliance; it is her body.
I drop the cup, sprint up-the-stairs-down-the-hall, shove open the door and lose what little shield that flimsy faux-wood provided from the sight, the sound, that horrible sound.
My girl is gone—just gone. There’s a body on the bed I bought as a surprise seven years ago when we bought this house, but my girl is gone. The body shakes violently-mechanically-increasingly, causing the bedframe’s metal, which twists into hearts at the headboard, to shriek so loudly that it conceals my cry. How? Why? What? STOP!!! Her long blonde hair cascades over her face. I brush it back, hoping my touch will snap her out of this—this whatever-it-is. The acceleration rages on. My girl’s big blue eyes—the ones friends covet and strangers compliment—are glazed, transfixed, oh my God dead.
Choking? Heart attack? Stroke? My synapses hurl commands.
As I desperately attempt to clear a passageway that is clearly not blocked, her teeth clamp down, sheer off three fingertips. My blood trickles down her cheek.
I cradle her head as her face turns ashen blue and her eyes roll back. I force myself to hold it together long enough to whisper: “you listen to Momma—do you hear me, baby? You listen to me: I love you, baby. I love you. Okay? Okay?”
Nothing’s okay. Nothing will ever be okay again. The shaking stops. Her body goes limp.
Friday morning. 6:52. Feet—heavy, male, multiple—clomp up-the-stairs-down-the-hall. EMTs encircle us. I am fairly certain that I’ve gone insane.
“Oh No No”
Ten days ago my biggest worry in the world was the color of my hair. “Go lighter,” I told my hairdresser, but two hours later I was darker than ever. Mousy brown. She said the platinum was “there” and would “pop” with time and sunshine. But I didn’t have time; a triathlete, I’d soon compete against the top ten percent in the country at the Age Group National Championships.
Big stuff. I’d be slow as a brunette. I went back twice so she could get it right.
That seems so foreign now; somewhere between the blood work, CT scans, sleep-deprived EEG and MRI, I’ve lost track of when I last showered.
Today we meet Dr. A, the neurologist that should know what went wrong with my otherwise healthy kid, a kid who until now has been sick a grand total of three times in her life. (For the record, two of those don’t count, since they were Mom’s-on-a-business trip-induced vomiting spells; she’s never liked being away from me.)
Dr. A says the “event” was a “tonic-clonic seizure.” The diagnosis is “epilepsy,” which simply means “predisposed to seize.” Beyond that, she says, we may never know more: three out of four people who seize never learn why. The brain is still mostly a mystery, she says. There’s so much we don’t know.
Never know? So not okay. Even worse: Dr. A says there’s a 90 percent chance it’ll happen again.
Dr. A says we are “lucky” my girl seized while in bed and not while in a pool or in school or while riding a horse. Lucky? No. The bottle of anti-convulsants on our kitchen table, the syringes of Diazepam in my drawer, the brand-new baby monitor that connects my pre-teen’s room with mine…I hate everything this tonic-clonic nightmare has wrought upon us.
Dr. A asks if my daughter has any questions. Her eyes well up with tears that she refuses to let spill over as she asks, “Do I have a brain tumor?”
“Oh no, no,” Dr. A replies, maternally. “That’s not at all what I’ve been thinking—the MRI will show for sure, but I’ve never once thought you have a tumor. Please—don’t worry.” Relief washes over us.
I am sitting amongst strangers in a courtesy shuttle van, enroute to pick up my freshly detailed car. Make that our car; my daughter hates when I call it “mine.” It’s our first new car ever—the new car loan was a hard trigger to pull for this single mom. This hybrid’s existence in our garage is a triumph of spirit over circumstance; its playful license plate— KYXGAS —refers as much to the chutzpah of its endurance-athlete driver as to the efficiency of the engine under its Blue Ribbon Metallic hood.
My ringing phone breaks the shuttle-van silence. It is Dr. A.
“I have some disturbing news,” she says in dulcet, measured tones. “The MRI results show a ‘finding’ in your daughter’s right temporal lobe.”
The connection is crystal-clear yet I process only fragments…mass of cells…extremely rare… needs to come out …meet our neurosurgeon… get her braces removed so we can get a ‘cleaner’ MRI…
What happened to the words that took terror off the table? Where did “oh no, no” go? Dr. A continues. I was not expecting this… big surprise… a lot to take in. Of all the 12-year-olds who come through my door every year, only one or two end up having “this.”
Finding. This. Screw the code; I need clarity: “Does my daughter have brain cancer?”
Her words crash into and over me, threaten to drown. Part of me hopes they succeed.
The van stops; we’ve arrived. At drop-off I obsessed over how they’d fix the itsy-bitsy nick in the trunk, from the day I opened the hatchback in the garage and it smacked the ceiling; now I don’t even look. Pay. Leave. The new-car smell they installed as proof of their all-day cleaning efforts makes me gag.
At night in bed I curl myself into a tight, motionless ball, listen to her chest rise and fall via the godforsaken baby monitor. I have never felt so alone.
“You are such a ‘coach’s girl,’ ” my male training partners tease. It is true. “The boys” tinker with Coach Tim’s workouts, but I do as told. Hey, Coach trains Olympians; who am I to second-guess?
My loyalty pays off: in three years, I’ve gone from Queen of the Elliptical Machine to an athlete who can own the podium’s top step. The workouts help, but sometimes I win simply because Coach says I can. His faith in me helps me believe in myself, if that makes any sense.
It wouldn’t be odd if one of “the boys” went dark, but the “coach’s girl” is quiet and Coach takes note. He emails, asking how “things” are; I know he’s not after paces or power readings.
I tell him I’ve seen the tumor—it shows up on the MRI as a bright-white, marble-sized oval near her right temple. I tell him they say it is “not too deep” and should be “fairly easy to remove.” I tell him Dr. A says it is “very highly unlikely to be malignant.”
I leave out a lot. I leave out that it’s hard to glom onto “very highly unlikely” since Dr. “Oh, No, No” lacks street cred. I leave out that “fairly easy to remove” is fairly hard to swallow since they’ll also scoop out a “margin” of the good stuff—brain tissue responsible for my girl’s memory, behavior, emotions—“just in case.” I leave out that I can’t sleep, my sweat reeks and a sob has taken up permanent residence in my sinuses, escaping not just during sleepless nights or when I research survival and recurrence rates, but also at random times like when I walk the dog or write a check for her school photo—the last one without a C-shaped scar on her right temple.
“Your mental strength will get you through this,” Coach emails back.
Oh, I wish I believed him now.
The term “double-triple check” was born into our familial lexicon when my girl was two and I improperly fastened her Trail-a-Bike to my own bike’s seat post, with both catastrophic and comic results. To this day if it’s important (homework? door locked? stove off?) it gets double-triple-checked, and you can bet taking a drill to my daughter’s skull qualifies. That’s why today we’re at the top children’s hospital in the country, the very one for which I fundraised just shy of $7K in return for 2011 Boston Marathon bib number 24777.
I set the pace as we head down the hall and it is more sprint than marathon; I don’t want either of us fixating on the frail-looking-shaved-head girl pushing an IV drip down the hall.
Dr. M’s office seems benign at first glance—fish tank in one corner, well-worn blocks and books in another. But there’s a three-millimeter “slice” of my girl’s brain on his computer screen, with the angry white orb at center stage; it is my usually snarky pre-teen’s first look at the enemy within. She snuggles into my shoulder, sneaks a peek as Dr. M speaks.
“Clearly not normal, healthy tissue,” he says matter-of-factly, pointing to the object I hate. “But,” he says, scrolling through slices with practiced ease, “I’m more concerned about the second finding.”
My girl burrows further into my armpit. She’ll take cues from my body so I force every muscle to stay loose and relaxed—all but one, that is: I raise my eyebrow to quietly convey I haven’t a clue about Thing #2.
Dr. M gets it, treads ahead lightly. The MRI report from the other hospital “seemed to dismiss it” but he isn’t. He reads it to me:
A focal T2 hyperintense focus in the right basal ganglionic region, inferiorly, most likely prominent perivascular space. No restricted diffusion, hemorrhage, mass or midline shift is seen.
I lose him at “T2”. I might as well be back in that courtesy shuttle van, because once again I hear only fragments: weird…deep…complicated structure…surgery not an option…see that? Carotid artery…
I stare into the abyss of this so-called “space,” trace the life-giving artery that snakes through “Thing 2.”
Racing has taught me to expect and accept that at some point my body will enter meltdown mode—I just can’t let it show. If I let my opponents know my heart rate is pegged and my lactate threshold exceeded, well, then I’m toast.
I can’t let Thing 1 and Thing 2 know they’ve got me pegged. But there’s something more. I am my girl’s coach now—she needs me to have faith, to exude enough confidence for two because there’s a whole lot more than some silly age-group medal at stake here. I suck it up, suppress that damned sob. Thing 1 and Thing 2 picked on the wrong Ironmom.
The sob sends a shiver in its stead; it uncontrollably wracks my body, nearly ruins my ruse.
This fall has been the coldest of all. Winter lies ahead. Oh, how I hate that last Friday of summer. Oh, how I wish it had never come.