JaneRoper_SharonaJacobs_ColorLoHi. I’m Jane. I wrote a novel called Eden Lake, and a memoir, Double Time: How I Survived–and Mostly Thrived–Through the First Three Years of Mothering Twins. Right down below is my blog, Jane’s Calamity, where I write about parenting, life, work, depression, writing etc. I’m a freelance advertising copywriter, and I write lots of other stuff, too. You could say I’m kinda busy. But I like it that way.

At the end of June 2012, one of my five-year-old twin daughters was diagnosed with  leukemia (ALL) so I’m writing a lot about that lately here. But I still try to include inappropriate jokes whenever possible, so don’t let it scare you away.


After

posted: March 31st, 2015

A house in our neighborhood, last month. Spring is inevitable.

A house in our neighborhood, last month. Spring is inevitable.

A couple of weeks ago I took the girls to the poster decorating party for the Dana Farber Marathon Challenge partner program — the program through which Clio’s ass-kicking partner runner Katelin is running her fourth marathon this year to raise money for cancer research. (Help her reach her goal!) We’ve gone to the poster party the past couple of years, and it’s fun for the girls, and there’s cookie decorating (which should really be called put a cookie under a giant hunk of frosting and sprinkles and candy and jimmies).

But we skipped the other event — a partner “meet-up” party — that’s part of the whole DFMC partner program, and are skipping the next one, too: a big banquet the day before the marathon to honor the runners and the patients and the partner patients who have passed away  — which includes a slideshow of the faces of now-dead children. I guess it’s supposed to  make people feel fired-up and verklempt and resolute in their commitment to raising money and running 26.2 miles. But you can imagine the effect it has on the many parents of children with cancer — both still here and not — in the audience. The first year I went, while Clio was back at the hospital, I spent most of that slideshow staring at the napkin in my lap. (And, you know, then the finish line got bombed the next day. So there was that.)

We are, however, planning to go watch the marathon at mile 25 again, and give Katelin hugs when she runs past. I’ve always loved watching the marathon, for as long as I’ve lived in Boston, and Elsa loves it too. (Clio, honestly, could take it or leave it, but she’s a good sport!)

But back to that poster party: There was a little girl there, decorating her poster next to us. A little girl with a fuzz of post-chemo hair and a turned up nose and chubby steroid cheeks and a sweet smile and she reminded me so much of the Clio of a year or so ago. I got tearful, and I had to go to the bathroom and collect myself.

What is that surge of emotion about? I can’t quite put a finger on it. It’s a strange mix of nostalgia (how sweet and resilient and brave she was through all of it; what a sense of purpose and clarity we had) and sadness and pain.

I think now that we’re farther away from it all, no longer in the high seas of our crappy little boat trip, it hits me in a way that’s almost closer to the way it hit when Clio was first diagnosed. The fear isn’t there the way it was then, but the pain and even a little shock are. A feeling of: what the f— just happened??

It rises up in both expected and unexpected moments. Yesterday we were over at Children’s for a follow-up meeting on neuropsych testing Clio had down (more on that later), and as we were waiting to go in, I looked out the window and could see across to another wing of the hospital, and saw crayon drawings and words on kids’ hospital room windows; saw toys sitting on the sills. Little kid scribbles and stuffed animals; teenage peace signs and books. I saw a couple of parents through the windows. I remembered what that was like, living in those rooms — the worry, the tedium, the paradoxical sense of powerlessness and determination. The grieving for life before.

Before, before, before.

Continue reading »

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Having a kid with cancer is enough to worry about.

posted: March 4th, 2015

Screen Shot 2015-03-05 at 8.25.52 AMOn and off over the years, I’ve volunteered as a writer for an organization called Small Can Be Big that helps connect individual families in crisis with short-term funding, often for things like rent or repairs. I hadn’t done a story for a while, but just last week I offered to do one and totally by coincindence, it happened to be a request from a family whose young son has cancer. The mother has had to stop working to take care of him, the medical bills are stacking up, and they’re now behind on their mortgage payments. (You can read their story and help them here.)

This is an issue very close to my heart.  Ever since Clio’s diagnosis, I’ve been acutely aware of just how “best case” our scenario is, in terms of what our life looked like going into the ordeal: We were all healthy (not counting the cancer, I mean). My depression situation was and has remained (amazingly!) stable.  Our marriage and home life was good, and our finances were, too. We both had flexible jobs, and could still keep working to some degree. We had a large, loving circle of friends and relatives to support us.

We’re also lucky enough to live in Massachusetts where (thanks, Mitt Romney!) we have an excellent health insurance system. Any co-pays or expenses related to Clio’s care that our private insurance wouldn’t cover have been covered by Medicaid.

We had all this. All these advantages. And it was still so goddamned hard.

I can’t even imagine how much harder it is to be dealing with a seriously ill child and serious financial strain. Or other health issues. Or addiction. Or abuse. Or any of a million other things that regularly complicate people’s lives.

I can’t imagine it, but I try to. In fact it’s the scenario at the heart of the novel I’m working on right now: What it would be like for a very dysfunctional, very unstable family to have a child with cancer.

But I swear it’s not a completely depressing book! Honest!

Anyway, if you can, go pitch in a few bucks at Small Can Be Big to help a family who could use a hand right now.

And if you’re feeling further inspired, check out Pinky Swear — an organization with a pretty amazing story that’s dedicated to providing financial assistance to families of kids with cancer.  They reached out to me recently* after reading my post for Dana Farber on ways to help families facing childhood cancer. And they are doing excellent work.

It’s good to know that there are folks out there trying to make things easier on families going through what we did.

 

FamilyPortraitSunshineLoRes

 

*I’m choosing to take Pinky Swear getting in touch, and the Small Can Be Big thing, as signs that I’m writing the novel I should be writing. Or something. Right? (Work with me here, people.)

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Four feet and counting

posted: February 24th, 2015

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Tubular Elsa

No, that title doesn’t refer to the amount of snow we’ve gotten in Boston in the past month. (That would be seven feet and counting.) It’s about something far cheerier and that — bonus! — doesn’t cripple major public transportation systems. Not that I know of, anyway.

So. Last week was February vacation (because we totally needed more time off from school after 6 snow days in less than 3 weeks), and we spent a couple of days up in Maine, visiting my parents.

On one of those days, we braved 17-degree temperatures to take the girls snow tubing – something we’d never done before. I’d previously toyed with the idea of taking them somewhere for a skiing lesson, but once I tried to actually imagine it (dealing with rentals, dealing with the girls freaking out at how the boots felts and how hard it was to walk in them, dealing with the immense expense) I said screw that. I’d be doing shots in the lodge by 10 am. And I don’t even do shots.

With tubing, there are no rentals, no crazy moon-boots that are impossible to walk in if you’re a human being with ankle and knee joints, and little to no risk of tears of frustration – just big rubber tubes, a little magic carpet to ride up the hill, and a bunch of lanes to zoom down from the top. AND it was less than $80 for the four of us.

We also got to enjoy a mini-milestone for Clio: The deal at this place was, if you were under 4 feet, you had to go on a double-tube with an adult. But if you were over 4 feet, you needed to go on your own.

Guess who’s finally made the 4-foot mark? Continue reading »

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New Yorker Cartoon Caption Entries, second-grader style.

posted: January 20th, 2015

I know, I know. My blog is becoming derelict. With Clio’s treatment done (she finished her last dose of Bactrim — an antibiotic that provided some extra coverage while her immune system was rebuilding — last week, so she’s officially off ALL meds!) I haven’t had the pressing urge. And I’m trying to use all my allotted non-day-job writing time for working on zee novel. BUT, I’ve been meaning to share with the internets some of Elsa and Clio’s New Yorker cartoon caption contest entries. (With their permission.)

Every week, when a new New Yorker arrives at our house —  before it is relegated to the pile of mostly un-read issues on our kitchen table — Elsa turns immediately to the back page for the cartoon contest. She first noticed it a few months ago, and ever since then, she’s been writing in her captions. And, more recently, she’s been submitting them (with our help) to the contest online. (Strangely, she’s never even made the finals.) Clio has gotten in on the game lately, too.

And so, since you’re unlikely ever to see these in the magazine, alas, I thought I’d share some of my favorites here.

 

Relax.   By Elsa

45Bucks

“I mean, please, do you think I’d show you a man-eating coupe if it was a dime over 50?”

 

Continue reading »

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Do you see what I see?

posted: December 14th, 2014

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“I look weird.”

Not me, that is. (I just look like I have a budding spare tire, thanks to way too much holiday food and drink — on the heels of way too much Halloween candy stolen from my children, and the fact that between illness and work and weather, I haven’t been able to run as much as usual. Ugh.)

It’s Clio. And she doesn’t look weird at all. She just thinks she does.

She’s been such a trooper all along about the changes in her appearance due to chemo and steroids — losing her hair, gaining weight and getting puffy cheeks due to steroids, not growing at all for basically two years while her sister and her peers shot up like dandelions around her.

She complained occasionally about the way other people saw her: she didn’t like it when other kids stared, or said she looked chubby (aren’t children darling to each other?), or mistakenly thought she was a boy. But her distress, for the most part, seemed to be externally focused — it was about how other people saw her. She didn’t complain a whole lot about how she saw herself.

Lately, though, she’s started saying that she looks “weird.” That her cheeks are chubby. That her hair is too thin. That she isn’t pretty. Continue reading »

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