Of Ara-C, Obamacare and Dirty Fairies

Hand-painted flower pots / Doubletree Inn. A tableau.

Sorry. Sometimes I just like to come up with the most absurd titles possible for my posts. It amuses me.

Anyway. We’re still here! In the hospital. Looking out at our fabulous and awe-inspiring view of the DoubleTree inn, part of which occupies a late nineteenth-century-ish building engraved with “City of Boston Girls’ Unit Continuation School.” How very…depressing sounding. Visions of doughy girls in shirtwaists, long skirts and button-top shoes, studying to be schoolmarms.

So, it seems like all of what has been going on since Wednesday — the fevers, the fatigue, the lack of appetite — was most likely a reaction to one of the types of chemo Clio was getting, called cytarabine or Ara-C. (Not nearly as lovely a name as the poetic Vincristine or the jaunty Pegasparaginase). And then, the shit-ton of antibiotics she had to take to cover in case the fevers were caused by infection had their own side effects, namely diarrhea and stomach cramps.

And now, as is to be expected with chemo, her blood counts are going down. She’s low on hemoglobin and about to get a blood transfusion as I write this.

And her spirits are low, too. This morning, she cried for fifteen minutes straight. She was unconsolable. Nothing was wrong, she said. She even denied that she was crying – as tears rolled down her cheeks. She didn’t want me near her, but she didn’t want me to go away, either. Nothing seemed to help.

Finally, after a while, she admitted, “I want to go home.” And then she said, for the first time in 6 days, that she was hungry. But she didn’t want to eat anything from the kitchen; she wanted our food, from home.

Now, before you go feeling too sorry for her, let’s be clear: the girl only eats, like, six things in life: pasta with butter or pesto, Thomas’s mini bagels or English muffins, yogurt, fruit, rye bread, pretzels and crackers. Okay, eight things. Still, it’s not like she was craving my famous turkey chili or penne with chicken, thyme and sundried tomatoes. And she could have gotten at least some version of all of her favorite foods from the kitchen or our mini-fridge stash.

But that wasn’t the point. (Duh, mom!) She wanted them the way she usually has them, from our own cabinets, in her own plates and bowls, at home. Can’t say I blame her.

She’s due for her next four doses of Ara-C starting tomorrow. The plan is to pre-medicate with steroids, which can help mitigate the effects. But we still have to stay here and see what happens. And the stupid thing is that if she *does* still get fevers, they can’t just say “well, must be the Ara-C, so let’s leave it at that.” No. They still have to put her back on antibiotics just in case.

Ugh.

I think part of why this is so hard — well, in addition to the fact that we didn’t expect to land back in the hospital for an extended stay — is that we had been focused for so long on getting through induction and into remission. And once we got there, there was a sense of relief — like, it’s going to be easier from here on out. But the fact is, the next six months are going to continue to be really, really intense.

There’s going to be lots of clinic time, probably more hospital time, and lots of unpleasant chemo side effects. It’s going to be unpredictable and messy and all-around crappy at times, for each one of us (and I most definitely include Elsa — poor Elsa, thrown into a tailspin all over again by this) in its own way.

Oh, and you gotta love how the sister dynamic plays into all of this: the girls each say, when they’re apart, how much they want to see each other. And then when we bring Elsa in to the hospital to visit, all the two of them do is fight like two cranky old ladies. If they had large, stiff vinyl pocketbooks, they’d whack each other overt the heads with them. And if it weren’t so annoying it would be funny.

I guess all I’m saying is, if some millionaire out there wants to send our family on an all-expenses paid trip to Hawaii once Clio’s in maintenance chemo and — maybe — life settles down a bit, I won’t be too proud to accept.

Actually, a week or two ago Clio said, apropos of nothing, “I want to go to Hawaii and do the hula.” And I had this very lovely vision of her and Elsa, eight years old, running and laughing on a beach. I’m gonna hold onto that. And also the idea that some kindly, cancer-hating millionaire out there is going to pay for it.

Speaking of money:

In case you were wondering how much all of our medical care between June 30 and July 25 cost — that is, how much it would cost if we didn’t have insurance — it’s about $170,000.

Yes. One hundred and seventy-thousand dollars.

I now realize with a whole new level of clarity why people — especially people like us who have to buy their own insurance instead of getting it through an employer — get dropped by their insurance companies, or refused for pre-existing conditions. And I feel very thankful to live in a state (thanks, Mitt Romney — the old one) and a country (thanks, Mr. President) where this can no longer happen.

Jeez. What a cranky post, eh? Here. I’ll end on an up note. This was one of the few things that got a giggle out of Clio today:

Q. What do you call a fairy that won’t take a bath?

A. Stinkerbelle!

Tee hee hee.