The new old Clio

September 30th, 2014

I took the girls to get haircuts this past Sunday morning.

That “s” on “girls” is a very big deal, as Clio hasn’t had a haircut in over two years — not counting the one where we buzzed off what was left of her rapidly thinning hair six months into her treatment.

She took the whole hair loss thing with such stoicism. I mean, she was self-conscious sometimes for sure, and I don’t think she exactly liked being bald or, later, having very short hair. But it wasn’t something that she was outwardly upset / sad / angry about.

These days, though, she’s very eager to get her hair back to looking the way it did way back when she was a healthy five-year-old: A cute, pin-straight bob. This is what it looked like:


Screen Shot 2014-09-30 at 3.57.58 PM

(Worn in this case with particularly goofy expression. I think it’s her “take the damned picture and get me off this bogus Santa’s lap, please” face.)

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Out of nowhere.

September 13th, 2014

So, the other day I was feeling sort of disoriented and disconnected,  in our quiet and lovely little neighborhood, here in this new town. As much as I love our house, and the peace and quiet, and the feng shui of being up at the top of a hill (a close second to being adjacent to a body of water), it’s decidedly strange to be living in a suburb after having lived in much more urban-ish places for the past fifteen-plus years. Not like we’re that much farther from Boston. But there’s definitely a different flavor to it.

Anyway, this town does have a bustling little Main Street (a little spookily healthy, actually; like something out of a Norman Rockwell painting), and there’s a new-ish Yoga and Barre studio I decided to check out. Barre is like a combo of pilates and yoga with a dash of ballet, and I’d never tried it before. It’s a pretty ass-kicking workout. And I mean that not in the sense of “this workout kicks ass!” but in the sense of: I got my ass kicked by this workout.

I mean, I could do it, and I’m in pretty good shape at this point in my life, having ramped up my fitness routine in the past couple of years (go figure). But it was hard. Good hard, though. I was “enjoying” it. I felt very present and focused, because when you’re trying with all your might to keep pulsing your leg up at a ninety degree angle behind you while holding onto the barre, and you feel like your ass about to fall off your body, you don’t have a choice.

Late in the class, after a grueling set of ab exercises,we flipped over onto our stomachs and did some lower back counter-stretches. A cobra pose, and then “swimming,” which, if you haven’t done pilates, is lifting your legs and arms off the ground at the same and paddling both as if you’re swimming. And as I was doing these lower back exercises, the weirdest thing happened:

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Out, Damned Port!

September 2nd, 2014
Upcyling oral syringes to make Pollock-esque masterpieces. Art > Cancer

Upcyling oral syringes to make Pollock-esque masterpieces. Art > Cancer

Hi there. It’s been a loooong time since I posted. The fact is, I’m feeling a little bit adrift as to what I want to blog about these days, and how I want to use this space now that the most intense and perilous  phase of our family’s cancer journey crappy little boat trip has come to a close (knock on wood).

In the months before Clio was diagnosed, I’d started feeling meh about blogging, and unhappy about the direction Babble, where I was blogging at that time, was heading.

Then, enter a Big Bad Life Event, and suddenly I was clinging to blogging like a life raft (I sure do like these boat metaphors, don’t I….) using it as a form of therapy and a source of support, while also maybe, I vaguely hoped, contributing something to the world. In that first year, I felt compelled to blog. But now…not so much. There are fewer stumbling blocks and milestones. Life is much more about just life. 

Meanwhile, after two years of putting attempts at a new novel on hold, I’m able to start that crazy climb again. (Mountains, marathons and drives at night in the fog seem better metaphors for book-writing than nautical excursions do). So I’m inclined to put my writing energy — and the precious few hours I have for non-work writing — there.

Anyway. I’m just musing here. Not declaring an end to blogging. Just acknowledging that my relationship with it is shifting yet again, and I’m not sure where it’s headed.

But enough about that. Let’s talk about Clio’s port removal. Woo-hoo! She no longer has a little piece of metal and plastic inside her chest, channeling blood and chemo, rudely collecting blood clots, and whatnot. We don’t have to panic when she gets a fever, because it might be an infection in her line. We don’t have to put a dab of Emla on her chest, covered with Press-n-Seal, before we head to the clinic to numb the area. (On the downside, when she goes for checkups now, she has to get blood drawn from her arm, which is no fun.) Read the rest of this entry »

Many Lasts (and one First)

July 30th, 2014

Zero more rounds of treatment!

There are a lot of lasts happening in our lives right now on the cancer front:

1. Clio’s last visit to the clinic for chemo, on the 16th. We marked the day by handing out homemade cookies to every nurse, doctor and staff member who crossed our paths, plus a few patients and parents, too. We also gave cards to some of the people who have been a major part of Clio’s care — the chipper nurse who managed a lot of the details of Clio’s meds and procedures, and who was usually the one to access her port. The Nurse Practitioner who oversaw Clio’s treatment and who we’ll continue to see and communicate with occasionally over the coming years. The awesome infusion nurse who helped Clio get through all 60 of those nasty Asparaginase shots in her thighs last year. The music therapist, who’s one of Clio’s favorite people to see on her clinic visits. It was a strange, surreal, sort of anticlimactic day. (I ate a number of the cookies we brought.)

2. The last dose of steroids. (And don’t let the door hit you on the way out!) Now that she’s off the juice, I hope Clio’s appetite for things other than starch and salt improves. We still have several bags of frozen, store-brand tortellini and ravioli in our freezer chest, casualties of her changing steroid cravings. (For the past few cycles, her frozen pasta of choice was gnocchi.) If you invite us over for a pot-luck and I bring a pasta salad, you’ll know why.

3. The last nightly blood thinner shot at bedtime. Another one we’re more than happy to kick to the curb. Clio’s poor little thighs have been mottled with bruises for a year and a half. Be gone, bruises! Be gone, needles and vials and sharps containers in our house!

4. The last dose of 6MP. As I wrote recently, I’ve always found this part a little bit sweet — sneaking an oral syringe of medicine into Clio’s mouth while she’s sleeping, or half asleep. It’s a moment for tenderness and gratitude and reflection in the dark. Of course, I’ll still sneak into the girls’ rooms and kiss them while they sleep before I head to bed. I’ve done it almost every night since they were born and don’t plan to stop until they’re the ones who go to bed first.



5. The last dose of Methotrexate. It took a few tries, but we finally ended up with a warm, caring, reliable and conscientious visiting nurse whom we loved, who came weekly to access Clio’s port and draw labs and/or give her her Methotrexate. It was an emotional moment, saying goodbye.

There are still a few more lasts to come — another medicine that will drop off the roster, and the last time her port will be accessed for labs before it’s removed next week (a whole other source of anxiety). Then, for the next six months, only one prescription to keep after — a prophylactic dose of antibiotics while Clio’s immune system rebuilds itself.

With all these little burdens being lifted — with this crappy (horrible, terrible, shitty, lousy) little boat trip coming to an end at last — you’d think that I would feel lighter. Excited. Relieved. It’s how everyone seems to expect me to feel. But the thing is, I don’t really. Instead I feel disbelieving and disoriented and numb. More than a little anxious, and even a little bit sad. What is up with that? My daughter has spent the past two years being treated for cancer and there’s a part of me that’s sad that it’s over?

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Nearing the Home Front

July 13th, 2014

What will we do with the big empty spot we’ll have when we ditch this stuff? I’m thinking accent chair…

Holy crap, I haven’t posted in almost a month!  Yeesh. Well, moving will do that to a blogger, I suppose.

The past few weeks have been a frenzy of packing up, moving out, moving in, cleaning, unpacking, dodging painters, installing things and logging miles between various big box stores. I’m a fan of shopping local and all that, but man, Target and Home Depot sure come in handy when you need, for example, 3 towel bars, 2 toilet brushes, curtains for the master bedroom, Contact paper, four 30″ cellular blinds — wait, no, make one of those a 29″, because for some inexplicable reason one of the windows in the room is one inch shorter than the rest — and non-aerosol insect repellent, because the girls need to bring it to Girl Scout day camp with them. Oh, and toilet paper. And make sure two of the towel bars are brushed chrome, not the regular shiny kind! Why? I just like them better. No, I don’t know why they’re three dollars more. Just get them.

So, life has been pretty chaotic and exhausting, and there’s still tons (tons!) of unpacking and arranging left to do. But it’s starting to come together and feel more like home. I’ve now cooked three actual dinners in the kitchen — as in, dinners that involve more than just warming something up in the microwave.

One of the biggest changes in our living situation — besides the fact that now, when the windows are open, I can hear wind rustling through trees instead of people cursing at each other — is that the girls now have their own rooms. They’re both pretty happy with this, especially Clio. (I think Elsa is of two minds; she likes it,  but also feels a little lonely at night.)

But it hasn’t been a screaming/whining/fighting-free transition. Before, the girls’ clothes were all together in one (increasingly crowded) dresser and one closet. Their books and dolls were commingled. And there were no “keep out” signs on the door. (Intended for sisters, not parents.) But hopefully things will improve as they get used to the new arrangement.


photo 2-4

I’m pretty sure Clio started with the “Keep Out” part, then decided to temper it with the “(k)nock ple(a)se”


photo 1-4

Elsa’s is more detailed and polite, but you get the feeling this has been an ongoing problem — perhaps for all two days we’d been in the ouse — hence the “Please!”


In all this transitioning, I’ve barely had a moment to stop and think about the momentous fact that Clio’s last round of treatment starts on Wednesday. Not brooding is good. But now that the dust is settled a little bit, I’m forced to confront it — and feel like I should. And really, it’s hard to digest. How can it be that after this cycle we’ll never (knock on wood) have to deal with steroids again? We’ll never have to load up on drugs at the Dana Farber pharmacy on our way home from the clinic? I’ll never have to slip a syringe of 6-MP between Clio’s lips while she sleeps? And after she gets her port out in a few weeks, no more Lovenox shots in her thigh before bedtime.  Read the rest of this entry »