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So, we’ve been home for exactly a week. And it’s far preferable to being in the hospital, lack of endless supply of free Shasta notwithstanding. When Clio walked in the door, after being greeted by the neighbors outside, her first words were — I kid you not — “Ah, home sweet home.”

And although Elsa didn’t express her feelings in a folksy old chestnut the way Clio did, I think she was equally happy to have all of us home together again. It’s still hard for her to have Clio getting more attention, though Lord knows we try to give her special Mom & Dad time of her own, and we’ve tried to evenly distribute the gifts people have sent between the two of them. (Although many gifts have been spirited up to the attic for future rainy days and hospital stays, because it would just be too much all at once.)

The first day was kinda like the first day home from the hospital with the girls as newborns. Holy crap! We have to do this by ourselves! But we settled in soon enough, and we have a visiting nurse checking in to do vital signs. The only real inconvenience has been having to keep cooking mass quantities of pasta for Clio rather than being able to simply order them from the hospital kitchen. We were already used to constantly pouring little snack bowls of Cheezits (which have displaced Cape Cod chips as totally unhealthy, salty snack food of choice).

Last night was the last dose (it’s day 29 — last day of induction! Woo hoo!) of the steroids that are causing Clio to eat like this. And lie around naked all day because she feels hot. I’m so glad. It’s been unexpectedly hard, all this feeding her pure starch and salt and fat, because it goes against my every instinct, which is to keep the girls healthy.

It’s also surprisingly hard — and I feel sort of shallow for admitting this — to see Clio look so unlike herself. (This is the tenuous link to the title of this post, and the picture. But mostly I just wanted to remind you all of Madonna’s many great cinematic achievements.)

Clio’s limbs are somewhat normal looking, but she has a huge, hard belly, and her face is almost unrecognizably plump and puffy. Still cute, mind you. But nothing like her face three weeks ago.

She hasn’t really seemed to mind that much or even be aware of how different she looks — one of the many blessings of having a kid young enough and un-self conscious enough that she barely ever looks in the mirror, or cares much about what she sees there when she does.

But the other day when Alastair took her out to the park, a little boy from her preschool saw her and, after they’d played together for a while, said “why are your cheeks so puffy?” A few days later, when we picked Elsa up from a birthday party the birthday boy came out to say hi to Clio and said — in that gleefully uninhibited, tactless way that preschoolers have — “You look fat!”

She said it didn’t bother her. (“Because it’s true.”) But last night, when she came along with Elsa and me to an outdoor concert Alastair was playing, we ended up leaving mere minutes into the show. There were tons of people we knew there, including many of her classmates and playmates. She was physically uncomfortable and tired and couldn’t play with them; she just lay down on our picnic blanket. And when they came over to say hello, she barely looked at them.

It started to rain a little, and that seemed to set her off, and suddenly she was crying to go home. I don’t think it was just the rain, though. “That probably felt a little overwhelming to see all those people, huh?” I said, as we made our way to the car. She nodded.

Meanwhile, she still has a pretty full head of hair, although it has definitely thinned a lot, and strands come out any time I brush it or run my fingers through it. It itches her when it sticks to her skin, and she says she wants to shave it all off soon. We’ve bought her some pretty rad hats at Claire’s — Elsa came with me to help choose them, and got one of her own. (“I love this store!” she said. “Everything’s so girly!” And proceeded to ask for every single thing she saw. We tried on goofy sunglasses together. It was fun.)

But I’m sort of dreading the day we take it all off. It’s going to be much more traumatic for me than her, I think. Alastair has also vowed to shave his head, too. More trauma! He’s been threatening to do it for a while, now — like, way pre-cancer while — since his hair is thinning pretty quickly. But I’m not sure I can handle all that change at once.

On the other hand, sometimes I feel like what the hell. What are a few more changes on top of everything else that’s changed already?

In fact, I’m actually considering lopping off my own hair to donate to Locks of Love or Wigs for Kids. I’m torn about it. I love my long hair. Really I do. And again, I’m not sure if yet another big change is a good idea right now. Not that cutting one’s hair is akin to, say, having your kid get diagnosed with leukemia. But I haven’t had short hair since I was 22, so it would be sort of a big deal.

On the other hand, sometimes you just want to change your appearance — get a tattoo, change your hair, change the way you dress — when change rocks your life. You know? It was why I cut my long hair back in college. There’s something empowering about it. You want to change things on me, life? Well, fuck you. I can change things, too.

I think I’m going to cut it off….

 

21 Comments

  • Jan says:

    Cut it if you f’ing feel like it hon. I’m a long-time reader, and barely-ever commenter. I’m just so gd sad that your lovely self and your lovely family have to do this. But I have to say that maintaining your wit and your ability to take charge of what you can just has to be a good thing. I’m a UU too, sortof, and will offer up my prayers for health and peace. F cancer.

  • There’s a lot to be said for taking power where you can find it! Go for it! I’m glad Clio is home – good luck with the adjustments.

  • EG says:

    I personally think a good new haircut is better than therapy. But you’re certainly doing your part to fight cancer and make a child fighting cancer happy, even without donating your hair!

    Sad thinking about Clio overwhelmed and without energy. 🙁

    And speaking of entirely too many gifts – I’ll have something for the girls (one for each) in the near future. Feel free to squirrel away in the attic if that’s best for you! I’ll send you a message when I’m ready for your address.

  • Eliza says:

    Check out 46 mommas shave for the brave or st. Baldricks. Both are great groups, and Alastair, or even you, can raise money and awareness too! After working with the baldies for so long (peds heme onc RN), seeing them with hair after treatment seems strange. All in ones perspective. 😉

  • tea says:

    You’d look great with short hair! But I worry that it might be hard for Elsa to have her 3 most favorite faces change all at once. And Clio too. Tough call.

    Get a Tattoo!! You can’t go wrong with ink – Hahaha 😉

    • Jane says:

      You make a good point about not traumatizing Elsa (and Clio. Not to mention Alastair!) I was actually thinking that maybe we’d stagger all the big hair changes over a few months. I wouldn’t mind growing an inch or two more before I lop it off, so I have a bit more to work with up top. Who knows, maybe Elsa will be inspired to get a new ‘do, too!

  • Amy says:

    Do whatever you want, deep down in your heart. Cut it, dye it, make it into dreds, just do whatever makes you feel a bit more in control even if that’s keeping it the exact same. I’m so glad Clio is home, and you are all together. You are a beautiful family.

  • Kara says:

    home sweet home – seriously? I’d be in tears. So cute.

    I say chop it off. But then again – I’ve been growing mine to donate to locks for love and keep putting off the actual date…

  • Annie says:

    So glad you guys are home safe. Donating to locks of love is such a great thing to do, and if you grow your hair long enough, once you chop the 10 inches, you will still have some length left and a hot new ‘do. Liberating! And so helpful. You all have been in my thoughts.

  • Jen R. says:

    Hi Jane,

    Thanks for the post. I think you should chop your hair if you want to! Another idea– possibly less traumatic for Elsa, and still a way of marking the importance of what’s happening– is to not cut your hair until Clio’s is long enough to get cut–then you can go get a haircut together and donate yours to Locks of love. (Pete didn’t cut his hair the entire time I was doing chemo, but it fortunately never got long enough to donate.) Anyway, so glad that you guys are home…

  • Guajolote says:

    I shaved mine at 19. It was past my elbows and then I was bald. That was by choice, however. My mother was horrified.

    You guys are awesome. The shaving in solidarity has always seemed really cool to me. I fully plan to if I ever have someone to support in that way (hopefully not!).

    I think both ways of looking at it are pretty valid. You’ve dealt with so much real, deep, meaningful change – do you really need to change the tiny things that might bring you some normalcy and comfort, like your hair/hair care routine? OTOH what’s a coupla feet of hair in the face of all you are going through.

    Also I gotta mention: go Elsa! Chicago should totally be represented in the Parade of Nations! Girl gets it. 🙂

  • Cindy says:

    Change begets change, I find. I wasn’t prepared to cut of all my hair so I did some bangs instead because I wanted to get the ICK feeling gone and gain some control. I love that you are such a strong family unit, so in tune with each other. You are forging ahead through this and keeping your sense of humor and it sounds like your strength. My heart is with you all; sending good vibes your way.

  • Camilla says:

    It’s worth actually looking up what the business model is for Locks of Love.

    There’s no reason that you shouldn’t cut your hair if you want short hair, but having been at the receiving end of a lot of pressure about hair donation (usually from peers, to whom it had been presented as a safe introduction to charitable giving) as a kid, it seems to me that it’s a meme that gets out of hand very easily. I think it’s more mature to own the real reason that you might want short hair.

  • I think you’d look great with a short cut, and you can always grow it back if you don’t like it.

  • Holly says:

    Didn’t you post about that ridiculous article about women over 30 with long hair? 😉 I’ve toyed with shaving my head, just for the fun of it–if Clio & Alastair do, maybe you & Elsa do too? (My husband always tells me, when I raise this idea, that my head is too bumpy to look good shaved, so I haven’t yet…)

  • Phyllis says:

    I offered to shave my head when my son lost his hair and my son was adamant that I not do so. I realized it is because he wanted me to look “normal” even though he felt strange. Another friend cut off her ponytail for Locks of Love, something she has done before, but he was mad at her for doing it. So…tread lightly and maybe see how Clio feels about it? Hang in there. Sometimes I think it is harder being home than the hospital…

  • Charlotte Koppenberg says:

    Thank you for sharing your journey. This is therapeutic. It allows me to re-visit my own journey through cancer treatments through the eyes of a mother. I am so touched on so many levels. Most importantly, all my best to you and your amazing family.

  • Rosstwinmom says:

    I use my hair as therapy as well. It’s fun. It will grow back. I cut mine super short when my mom did chemo.

    Sending love to you all. Try not to over-think any decisions/moments with the girls. They aren’t keeping a tally. They’ll just remember how the family stuck together and welcomed talking about both the good and bad feelings.

  • April says:

    I am so sorry Clio is still feeling not herself. I offered to cut my hair off for Clio to have a wig if you want. She loves “Annie” so she can have my red hair. Its straight instead of curly though.

    I cut it off once for the Pantene hair charity and I know lots of friends who have done it.

    I am going through a change phase too. I am trying to dress cuter and take better care of myself lately. Not sure why. Mostly because my BFF is doing it and I don’t want to be left out. At least my husband appreciates it. I don’t look dumpy anymore. Maybe it relates to the boys going off to full day school in two weeks. I won’t just be “mom” anymore. Might try to write a novel or some kind of book. I might be sending you stuff to read soon. haha be warned. Love you guys!

  • April says:

    Oh I was going to ask if you know what is happening as far as school goes? Just curious. Are you homeschooling? I send mine off in two weeks. Will let you know how it goes. I am nervous as hell because we have not straightened out Harrison’s IEP stuff and Eric having the peanut allergy it all makes me a nervous wreck.

  • Mimi Lewinger says:

    So glad to reach you at your new blog. I’m anxious to know how the test on the 29th turned out.I’m hoping there was no cancer. When and if you have a moment , let me know please. Love,MIMI