It got me thinking about luck. It's hard to hang your hat on it, ya know. I don't believe that it was bad luck that Hope got cancer. And I don't think she'll need to be lucky to continue to be healthy after her treatment ends. But on the other hand I also don't think God gave her cancer or took it away, or that if we just pray hard enough it won't come back. That's not the God I believe in. So where does that leave me?
Genetic mutation and variation isn't lucky or unlucky - it just is. It's remarkable to me that cancer isn't more prevalent. Life on a molecular level is insanely complicated. So much has to go right. And even with the number of fail safes in the system, you would think that the combination of unrestrained cell proliferation and the prevention of cell death would happen more often.
If I did rely on luck, I suppose I might have to buy into the notion of how too much talking about the future might "jinx" us. But I refuse to believe in causing genetic mutations because of conversations or thoughts or a lack of prayer or even a lack of goodness. I won't put human agency or omission on the hook for a process that even the smartest scientists in the world and the holiest spiritual leaders can't explain.
Did you read Humans of New York over the last few weeks? HONY is an incredible website and Facebook page that tells people's stories - with an image or two and a few paragraphs of text, it manages to convey the breathtaking, heartbreaking, mundane beauty of being a human being.
A couple of weeks ago, I noticed a HONY post that one of my FB friend's "liked" in my feed. The picture accompanying the post had a bald kid in it - so needless to say, I clicked on it. HONY was just beginning a series of stories about families and medical staff at Memorial Sloan Kettering's pediatric oncology unit. Everything I've ever wanted to tell you about the bizarre juxtaposition of joy and terror - and so much more beyond my experience - are laid bare in these stories. When the telling was done, HONY had raised $3.8 million for pediatric cancer research.
Too many kids suffer. Too many families have to endure this journey. It gets so much worse than what we have gone through. And I know better than to say, "I could never endure what they have." Because some paths are forced on you. Sometimes you find yourself not at a crossroads but on an entrance ramp, and you have no choice but to get on and hope for an easy exit. Some things just happen.
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12 days left.
For the last month it's been raining. Like every day. Reading the first half of this post, you might wonder if I'm suffering from a little seasonal affective disorder.
This morning, Hope looked out the kitchen window for her daily weather report and exclaimed, "Mom! It's no rainy anymore!" I'll take the opportunity of this sunny day to add to some slightly rosier musings to the rather fatalistic words above.
It's not about luck. And to my way of thinking, it's also not about convincing a higher power you deserve a different path - nor did the God I believe in choose this for Hope or for the rest of us so we could learn something or find some "meaning" in it. S/he can't be bought or sold - and S/he isn't some kind of a sadistic puppetmaster.
I think it's just what life is. Each of us hurtling around the sun, accumulating experiences for as long as our existence lasts. Sometimes our eyes are really open to what is happening around us, but usually we get lost in the details of physical and social tedium - next meal, next paycheck, next meeting, next project, next workout - and that's OK. Because we all have moments every day that jolt us awake for a split second - to notice the way the raindrops are plunking in the puddle or the sounds of giggles from the living room or the aha moment of finally understanding something that had alluded us. And sometimes the moments are longer and we can luxuriate in that knowing that we are living the real thing.
Our last 27 months have been that oscillation between those two aspects of living: the details and the breakthrough moments. The details - of chemo and doctors and temperature checks, of figuring out what to eat and when, where to go and how, how to live and play and work between all the responsibilities and needs of the five of us and the demands of cancer - and moments of recognizing that those details are just the time-fillers, the distractions from the main events of life. Maybe the details of Cancerland make that contrast starker. But lots of human experiences create that striking juxtaposition - some filled with sorrow but others with joy - new babies, time spent in old forests or at the ocean, the loss of a family member or friend, falling in love. Some experiences we seek out, crossroads we are happy to encounter, and others are doors we are pushed through.
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11 days left.
For the last week or so, Hope's been asking each morning if we can go to the hospital.
"Why?" we ask her. "See the downstairs doctors," she replies.
"Not today."
"One more time see downstairs doctors?"
"Right. Do you remember why we are going to see them one more time?"
"Take my port out!"
This daily script also includes the reminder that she does not like "that little pillow." Every. day.
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10 days left.
When looking at local schools for the big kids years ago, I visited our old neighborhood school where the kindergarten teacher showed me a bulletin board filled with identical worksheets. Each had the numbers 1-10 on little squares that had been cut out and glued on the paper in reverse order. "This is how we learned to count backwards from 10," she told me. Sigh.
As I walked home, I thought about how Celia and I would count backwards before going down a slide, as we played rocket ship, as we jumped off a curb or the bottom step.
For Hope, the setting at this stage of development was a little different. We count up and down along with the elevator at Hopkins. There's a little screen at Hope's squatting level that flashes the numbers as you travel up and down from the 11th floor. And a kids voice announces the floor when you arrive.
Sweet Hope, bald and masked, excitedly shouting out the numbers as we headed up for chemo or down to the pharmacy. Elevators full of people astounded by her.
Counting down.
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9 days left.
It was Hope's last day of preschool
She missed out on a lot of her early childhood, but she worked on making up for that lost time at her Play School. She made a couple of good friends, she climbed and spent hours on swings, she loved and trusted some loving, trustworthy teachers. She got clued in to the humor of 5 year olds (hint: poop and being "stinky" are hilarious). It was exactly what she needed.
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8 days left.
We are counting down, but strangely as soon as we get to zero, we'll start counting up again. Days and then months and then years of being "off treatment" or OT. The further you get with no "events" - which I think is the medical euphemism for relapse or a new cancer diagnosis - the better, of course. You hope it's the count that doesn't end - with the most significant milestone being 5 years OT which is considered "cured."
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7, 6, 5 days left.
Busy weekend. Quinn performed in his first stage production - he was the narrator in Into the Woods -- and he was fantastic. It was so cool to see him take on a new activity with enthusiasm, work at it, and then shine on the stage, clearly enjoying himself so much.
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7, 6, 5 days left.
Busy weekend. Quinn performed in his first stage production - he was the narrator in Into the Woods -- and he was fantastic. It was so cool to see him take on a new activity with enthusiasm, work at it, and then shine on the stage, clearly enjoying himself so much.
Celia had her last POL today - Presentation of Learning - it's a formal presentation of her year's school work, with reflections on her learning and thoughts about how she will grow in the coming year, for a teacher, her parents and invited guests. Poise, good humor, intelligence and so much insight in evidence.
As for Hope, she is ALL DONE with Methotrexate. I gave her the last dose last night. She's been taking it orally on a weekly basis since November 2014, and I think it makes her feel kinda cruddy. But I hold a major grudge against it because of how horribly she reacted to the much higher IV doses she faced during frontline treatment. The mucositis that led to weeks in the hospital, morphine, loss of 25% of her body weight, fevers, breathing troubles, and so much misery - methotrexate was the culprit. So very glad to finally put it behind us.
