Words

Words are not coming easily these days.  The new routine is quickly becoming a cycle.  One day, at the hospital for seroma drainage, more tests, more opinions, more issues because my body is no longer perfect (and the irony is, I never thought it was!).  The next day, paperwork, spring cleaning, a relaxing playdate with friends and kids.  The third, housework, all day long — to catch up from the first two days!  And then I rest.

We went for a brain MRI on Friday, and they couldn’t do it, since they couldn’t stick either arm or hand.  To get the brain MRI, I’ll need a pic line or a port.  But there will be more tests, so we’ll wait to get them all done at once.

Soon, I go to Sloan-Kettering in NY for a second opinion on my treatment.  I’m nervous, I admit.

and the words won’t come.

Grounded.

Despite my best efforts — and getting out this week for dinner, for a playdate, for a press conference, and for three half-days at the cancer center, I’ve been grounded.

The seroma continues to fill with fluid. if I went to AbSciCon, the Astrobioloy Science Conference, this weekend as planned, by the time I got back I’d have 1/4 to 1/3 lliter — or more — of fluid in my armpit, bruising my skin and straining the stitches to bursting. There’s nothing to do to prevent it; and ERs and surgeons won’t generally drain another surgeon’s patient. So, since I’d rather the stitches NOT burst (since they won’t stitch the area back up because of infection), I’m stuck close to home, close to my cancer center, where they can remove the fluid again on Monday.

(Interesting note — seromas can behave like lymphedema-affected areas. Both swell up in low-pressure conditions like an airplane flight; that’s why you’ll see women who have had mastectomies (and lymphedema) with an arm wrapped in bandages when they fly. I could wrap the seroma too, but there’s no research showing that it would work.)

So, I won’t be giving my workshop or the Women in Planetary Science lunch this week. I will be here, catching up on the chores and making plans for the summer — optimistically, including swim lessons for the kids and a trip for us!

Happy weekend, all!

Not every day is cancer.

Not every day is cancer.

Some days, I play with the kids in the back yard, imagining pirates on the horizon, or dinosaurs in the forest, leading them on merry adventures that end with us collapsing together in fits of giggles.

Some days, we go to the playground with the climbing trees, climbing higher and higher until we almost touch the sky.  We hear the sirens our voices make as we Whee-oh, Whee-oh around the playground, mommy falling back as new kids fall in, best friends for the moment, running faster and faster, until the school buses pass and it’s time to go pick up older siblings and begin the dinner/bath/bed routine.

Some days, I write the book, weaving quotes into stories and hiding lessons learned in adventures, writing the stories of the men and women who build spacecraft to journey to other planets.

Some days, I do laundry. Mountains of it, as the other days are full of adventures and dreams and asking and answering and wondering questions now that my little one is full of the most wonderful words in the world to my ears: “Why, Mommy?”

Yesterday, Tuesday, I woke up (after the news about radiation and fourteen hours of sleep) determined to live an ordinary day and checked the calendar.  Not such an ordinary day after all — I was going to a press event that  MomCentral had invited me to eons ago and I accepted in a fit of optimism.  It was a challenge to get out of bed and pretend that it was just another ordinary day, metroing downtown like I did once-upon-a-time, entering the National Press Club with the businesswomen, musing how once I was like them, in silk suits and heels, but now my hands felt empty without little hands beside them.  I smiled as I stepped off the elevator, remembering that I would pick them up at 12, and, doing my own sort of balance, I walked to the Zinger room.

Are you a mommyblogger?  They asked as I walked in, and yes, I said, wondering if that meant I sat in the back, but the welcomers were welcoming, and the Pearson Foundation had set up a lovely event.  Laden with swag (information and a t-shirt), I took a winding path between Amy Tan and Ridley Pearson, just to come face to face with the muffins and Dave Barry.  No kidding.  Dave Freakin’ Barry.  So we talked, there in front of the muffins, and I told him about the power of mommyblogging, and he told me about his latest books, saying, “I’m a writer too,” which made me giggle, because I’ve been reading his work since I learned to read, essentially, at the breakfast table with my father every morning, as my mother got us ready for middle school, and his work is probably the reason that even today I have a love affair with newspapers, and my fingers are smudged with newsprint when I drop the children off at school.  I was trying not to be all fangirl when I met him, so I didn’t gush, but that line, “I’m a writer too,” threw me off and we talked about his new work, a series of prequels about Peter Pan that he’s written with Ridley Pearson, and I was appropriately gushy.

The room was filled with not press, but mommybloggers.  I was delighted to see my good friend and colleague Sue from Laundry for Six; MomzShare MasterMamma Lara from Chicken Nuggets of Wisdom;  MomzShare HipMamma Jennifer from Hip as I Wanna Be; mom of teens Musings from Me; longtime read Lolli/1 Mom of 5; new friend SafireCat who writes Living in Maryland and gave me tons of tips about the revising process; Stephanie/MinkyMoo, who I just met but adore; and Dumb Mom, who I really wish I could call by her real name.

We were there for an event about the launch of the amazing new site We Give Books, a philanthropical effort by the Pearson Foundation and Penguin Books that not only gives books to children in need across the world, with partners such as World Vision, Books Across America, and the Chicago Public Schools, but also helps children and teens develop the habit of giving.

Here’s how it works.  You and your child (ages 1-10) go online to We Give Books.  You select a partner charity, like Books Across America, or World Vision, which sends books to new learning spaces in areas devastated by January’s earthquake in Haiti, and then you hand the laptop to your child and let him choose what to do next (I told my child that this was a site for kids, and that only kids were allowed to navigate the site, to build his independence and empower him to do this on his own, and to feel the power of giving afterwards).  There are so many childhood favorites there online, and your child can read any of them for free.  All he has to do is select the book and then highlight the right hand side of the page (Suggestion for WGB: add a bolder button that little ones can find more easily), and click the mouse to turn the page. It turns, just like a book.  Once your child is done reading the book, the next screen shows that a book has been donated to the partner charity (Suggestion for WGB: make this notice bolder and brightly colored, with simple words that a toddler can read and take pride in).  Voila.  The child reads, the child gives.  Together, you can read and view videos of the impact that books make in places like Mongolia, Haiti, and poorer school systems worldwide, where children don’t have many books at home.

This is also a wonderful jumping-off point for discussing need, sharing, and helping your child come up with other ways to share their things (outgrown toys, perhaps? playroom clutter?) with people in their own community.  There’s some really good research, led by Dr. Marvin Berkowitz, translated into tips on how to raise a giving child, that the Pearson Foundation distributed.  When I find where it is online, I’ll post a link and some thoughts.  I’m really intrigued by this campaign.

You won’t find many endorsements or reviews on this site.  I’m not changing that.  But this is important.  This is about literacy, access to books, new ideas (like the ability to do things like baby book club, where everyone can read the same book online and then discuss at playgroup!), philanthropy, and teaching our children to enjoy reading and enjoy giving.

I’m all on board.  Widget and I set up an account yesterday at We Give Books, and, when I explained that it was a way for kids to give other kids books, he smiled.  He proudly selected The Little Engine That Could, we read it together online, and he “gave” a kid in Haiti a book.  Smiling, he slipped off my lap, and we turned off the computers.

But tomorrow, I’m setting his laptop (the one I used in 2000, creaking along on its last legs) here next to mine, and we’ll read and write on the computer together.  While we give books.

OH!  And look who Sue and I raced to take a picture with after the press conference?

Not every day is about cancer, you know.  Some days are about books, good friends, and meeting childhood heroes.

Disclosure: The Penguin Group and The Pearson Foundation announced We Give Books at a fun press event with muffins, t-shirts, concert tickets, and a gift certificate. I haven’t yet seen the gift certificate or concert tickets, and I don’t care.  I support literacy and philanthropy and am excited about this new venture.

Radiation, said the doctor

Radiation, said the doctor.

Radiation, said the doctor, as she entered the room an hour after our appointment was supposed to begin.

Radiation, said the doctor, as she entered the room after a half hour of poking and prodding by a fellow I’d never met before, intense prodding of each and every lymph node under my jacket, my shirt, my pants, an hour after our appointment was supposed to begin.

Radiation, said the doctor, as she entered the room after I’d spent the day at the hospital, having a procedure to drain my bulging seroma, meeting a medical student and recounting my history anew, every recounted step widening her eyes as I lowered mine,educating about IBC as she left, doing strength tests for the neurosurgeon who towered over me, agreeing to another MRI, scheduling appointments, giving blood pressure by pulling my left pantleg up, and wincing, insisting to the nurse that my arms can no longer be used to give blood, consulting with the head lab tech about the blood draw, waiting again in the waiting room I fear (a room that is, both figuratively and literally, the last stop before chemo), a quick nap on the exam table, and then the poking and prodding by a Fellow I’d never met before, intense prodding of each and every lymph node under my jacket, my shirt, my pants, an hour after our appointment was supposed to begin.

Disbelief.

and then, somehow, my sweetie got me dressed and we emerged, blinking, into the sunlight.

…

We will start radiation as soon as my seroma heals, follow it with oral chemo, and start again with a PET in June. We were prepared, both mentally and physically, with soft bedclothes bought and schedules altered, for triweekly infusions to begin, and so this will take some getting used to, to say the least.

It is a reprieve. A reprieve we could never have hoped for, in the face of what is still a recurrence, and we are grateful, almost jubilent at the good news.