I’m still here. Hello.
So, here’s what goes through one’s mind on a day like today:
5:00am No one should have to get up this early.
6:00am Hey, traffic doesn’t seem that bad!
6:30am Crap. Traffic.
7:15am We made it on time!
7:25am Wait…what floor did I just park the car on? Oh well, we’ll find it later.
8:00am Wow — looks like the MRI will start on time!
8:15am Guess not.
8:30am Well, it could have been later.
8:35am While I am still deeply committed to the prevention of drug use in young people — my son is a RIOT while drunk on propofol. Nighty night, kiddo.
8:40am Hello, brain? This is stomach. Feed me, YOU BASTARD!
8:45am Yummy greasy bagel sandwich….But can someone tell me what exactly Asiago Cheese is, and why (as the Manny noted once) I only hear of it in bagels?
8:50am I am wondering if having a video feed of ultra-skinny fashion runway models slinking along the catwalk as part of a fashion illustrator exhibit is appropriate — in the lobby of a children’s hospital. Are they trying to recruit new eating disorder business?
9:15am There is something very funny about watching Sesame Street in the MRI waiting room while listening to Concrete Blonde on the Ipod
9:16am I can’t believe I’m missing the Concrete Blonde concert tonight…Cancer sucks.
9:17am Cancer….I hate you….Now stop thinking about it…
9:30am What’s even weirder than Big Bird and “Mexican Moon” is this computer animated dinosaur show on PBS. These cute kid dinos hop a train to adventure, and this week they’re looking for dinosaur fossils. Granted, I’m missing the audio for context, but this seems freakish and inappropriate. This is like me taking VB and his preschool class to dig up graves…”See kids, your Great Uncle Ray!”. Probably doesn’t help that Florence + the Machine are playing in my ipod at the same time.
10:00am Okay, it should be over by now…Where are they?
10:01am Something is wrong.
10:02am Nothing is wrong — don’t be an idiot. They’ll be out any minute.
10:15am He’s out — and sleeping wrapped in that blanket he looks like a tiny mother theresa.
Rest of Day: Thankyouthankyouthankyouthankyouthankyou…
So after months of avoiding the television in favor of evenings working…or reading…or staring at Vampmommy saying “hey, don’t I know you”…We’ve spent the last few nights reconnecting with our friends in TV-land through the wonder of the DVR. And you’ll never guess what we have discovered?
I think now is the time I am supposed to say: “SPOILER ALERT!”
I know there’s nothing like cancer to add a touch of deep drama and a potential Emmy-nod to a TV show. However, those of us who have lived in that world for real usually just sigh and think “oh, here we are again”, examining every plot point for the slightest sense that they have any idea what it’s really like. Sometimes they get it right, and other times we laugh at something wildly inaccurate — in our minds as big a gaff as the boom mike falling into the shot and hitting the actor on the head.
So much for television as escapism.
However, if anyone from Lifetime TV is reading, no one has optioned our story — and we’ve got college tuition to pay for one day…..
Your alarm screams you awake at 4:45am. Actually, you’ve been up longer — between your wife not feeling well throughout the night and your son taking control of the majority of your bed at some point. You would normally wake up and grumble in frustration as he kicks you for the eleventh time. However, your better nature reminds you that this is not a day you want to start out angry.
You stumble like a drunkard through a mash-up of your morning routine, at once completely exhausted and yet focused on getting out the door on time. There’s no food or drink — not fair to eat when your child can’t — so you ignore your stomach and move through the rushed steps to get on the road.
The car is warm, and Ella Fitzgerald is singing “Rudolph”. You’ll listen to it several times over the next hour, but again this is a day where your son gets to call at least some of the shots. You know what’s at stake as you drive through the dark towards Boston. You remember how quickly you went from a life of perceived normality to one in which you expected the phone to ring at any moment, telling you your child was dead. You shudder. You do not want to go back to that. You can’t go back to that. You lift your ban on turning things over to mysterious higher powers, and remind the universe that today should be a day of good news.
Heading into radiology is always a series of “oohs and aahs”, as nurses and anesthesiologists remark in glowing terms how great he looks, how much he’s grown. You remember that, for some, they are more accustomed still to seeing him bald and emaciated, with his brilliant smile shining through a skeletal frame of gray and green. “He does, doesn’t he? He’s doing great!” you reply to their words — but is he? That’s why you’re here. One more chance to stare into the abyss and see whether or not you’re getting pushed in.
Things never start on time. An MRI machine is down, or your stuck in traffic — all common occurrences that require you to just keep breathing and be patient. Your stomach begins to view your liver like a succulent dish as you sit quietly reading to your son, while some teenager who can’t stay still ties up the MRI Machine for over 2 hours for a scan that should have only taken 30 minutes. Whatever — your son is calmly reading books and entertaining the staff with tales of his time in “pre-K” and pushing toys around the floor.
Eventually the moment arrives, and with a kiss and hug your son is taken by your wife out of the room and behind the door, where doctors will administer the “happy drug” that will keep him asleep, quiet and still, for the duration of his scan. You wonder why they didn’t just jab that damn teenager with a vial of the stuff. You remember also that the drug, Propofol, is the one that Michael Jackson overdosed on. Pity – your son has always done so well with it.
Always? How many scans has this been? In total, since the day this all began, probably the 20th? Bloody hell.
The ringing phone takes you away from this thought thread. It’s Audiology, calling to tell you that the doctor who was supposed to do your son’s hearing test is ill, so they need to cancel your appointment for today and move it to tomorrow. You try not to reach through the phone and strangle them while explaining that you live an hour away and took all of today off work, whereas tomorrow you only took half a day to visit Brain Tumor Clinic in the afternoon. Plus it’s supposed to snow. You’re not sure if you presented your case in a calm and respectful manner, but clearly your tense response is all the scheduler needed to try to “go back to the drawing board” and squeeze you in today. In the end it won’t happen, but she does try, and at least fits you into an afternoon appointment right before Brain Tumor Clinic so you don’t need to lose the time at work.
Then another call — a discovery that an appointment was scheduled that you don’t need. Leave it to the coordinators not to coordinate. You wonder about hiring an assistant to navigate the faults of others — being a parent under these circumstances is work enough.
Calls answered, and your stomach is swearing to you through its growling. Breakfast is Au Bon Pain — a place you would never eat at again if you could avoid it. The sludge coffee and greasy bagel sandwich bring back memories of countless meals grabbed from there over the years, none satisfying but enough to keep you going for one more day. At least this is the first time you’ve eaten there in three months. Hopefully it will be the last time for that long as well.
Then you sit, watching Sesame Street on the wide-screen TV in the waiting room. Your wife reads — you should have brought a book. Instead you brought your Ipod, so you scroll through a list of your memories, trying to find the right tunes to take your mind away for a few minutes. Your own auditory Calgon.
Its when the nurse calls you in that your heart begins to race. Of course, he’s sleeping peacefully, and in a few short minutes will sit up bright-eyed and inhale seven packages of graham crackers while naming each of the Disney Characters plastered on the recovery room walls. But while you’re waiting for the cracker-fest to commence, you grasp your phone to the point your knuckles turn white. You’re not supposed to keep your phone on in the recovery room (apparently a call can cause the IV drip to explode or something), but given the speediness of the treatment team in reviewing your son’s scans, you know a call will come any moment.
Unfortunately that moment is a lifetime of worry, anxiety and fear. It’s getting easier between scans to return to a normal-ish life, and forget that you are only balancing a bit more firmly on a cliff that still stands before you in the dark. Your mind runs through the visions of bad news; how you’d handle the moment, how you’d tell your family, your co-workers. How you’d tell HIM. He so peaceful as he sleeps before you, his impossibly soft skin and red cheeks offering the fleeting promise that good news is possible, hold on just hold on.
The phone rings. You launch out of your seat, a rocket lifting off into an intense space.
“It’s Peter — the scan is clear.”
You exhale — probably for the first time all morning. Your shoulders relax, and your not sure if your joy will lead you to run a mile screaming or to burst into tears. You take another breath, smile, and offer your son what will be the first graham cracker of the rest of his life.
Ah, fall — so lovely, and so fleeting. It seems just moments ago fall was crisp in the air, and VB was rockin’ the pumpkin set. Then the eye blinks, a cold wind swoops in, and now there’s a white coating on the ground and I wonder where I’ve been.
Only thing to note at the moment (more notes to follow soon, I PROMISE), is that VB returns to Chez Healing for his next MRI on Tuesday. This will be a biggie — 3 year post-diagnosis scan. As they are all “biggie” in my mind I’m not sure it matters much, other than to say we’ve had a long and lucky road and we want desperately for it to continue.
I’ll be tweeting the days adventures as much as I can (note the feed to your right). So, if you find yourself sitting on Santa’s lap in the next day or so, please ask him for a clean scan. Then, book an appointment with your therapist, as I’m guessing my average reader is slightly older than a 9-year old and I’d wonder what the hell you’re doing sitting on Santa’s lap anyway…..
Every summer a non-profit, all-volunteer organization in our state runs a camp weekend for families of pediatric cancer patients. As I am ethically opposed to nature — and coincidentally drowning in work as a result of our most recent vacation — I skipped the outdoor adventure, but watched VM and VB pack up the car on Friday and head into the wilderness.
They are now back, albeit a little sun exposed and perfumed with the latest in all-natural bug repellant technology. But, brimming with pride, VB tells me about his adventures, and proudly shows me his latest accomplishment — actually making it halfway up a climbing wall!
As I am brimming with pride and amazement, I am reminded that once again we are hanging by our metaphorical ropes, as VB has his next MRI tomorrow (Tuesday). Any spotters out there are welcomed! I’ll be tweeting updates throughout the day — upward and onward!