The Only Way Out is Through

Same time, last year.

Well, it’s been a crappy week here in our little corner of Cancerland.

Nothing dire, no hospitalization, no emergencies. Clio has just felt really, really sick on account of the many poisons being put into her body.

(Feel free to skim the next few paragraphs of chemo jargon if you like. Summary: lots and lots of meds.)

Last Wednesday, she had her first lumbar puncture, for administration of a kind of chemo called Methotrexate, since her seizure back in October. Methotrexate is the stuff that caused a weird neurological incident back in August, and then a full-blown seizure in October, which landed her in the ICU. (Although that time, she’d had Methotrexate both intrathecally and intravenously.)

Unfortunately, treatment of the spinal fluid, with this particular drug, is a far too important part of the protocol to skip. The cerebrospinal fluid is one of the places leukemia cells “hide,” so you have to go after ’em.

Clio is taking anti-seizure medication, and some Klonopin (similar to Ativan) as well, so she’s well-covered, and chances are she’ll be fine, and won’t have a seizure. Still. As you can imagine, we’re on high alert.

She also got her tri-weekly crapload of other stuff — the alluringly named Vincristine, and the dastardly Doxorubicin, as well as some other drug, whose name escapes me, whose sole purpose is to protect your heart from the Doxorubicin, for fuck’s sake.

And the chaser for all of this is five days of high-dose steroids. With a midnight snack of 6MP for 14 days, and of course the twice weekly asparaginase shots in the thigh, come hell or high water. Easy peasy!

What really sucks, though, is that with each successive cycle (we’re on number four now; six more to go) the side effects seem to be worse. The steroids, in particular, seem harder and harder on Clio. This time, she’s had a bit of a cold, too, and as a result has basically spent the last five days lying on the couch, in and out of sleep. And eating tortellini. She’s cranky and sad and irritable and whiny and downright unhappy.

And all she wants is me. She wants me — not Alastair — to be the one sitting by her side and rubbing her back, giving her her meds, adjusting her blanket, helping her brush her teeth or put on her PJs or whatever else she needs. A few nights ago, after she’d woken up in the middle of the night for the second or third time, saying she couldn’t sleep, complaining of a mouth sore (Chemo, I hate you) I just got into her bed and spent the rest of night sleeping there with her.

The last three times we’ve been to the clinic, I’ve had to take her to and from the parking garage in a wheelchair, because she’s been just too weak and tired to walk. And let me tell you, there’s nothing like a bunch of other cancer patients (mostly older adults — as in the people who *usually* get cancer) looking at you with pity to make you feel really, really sorry for yourself.

So there’s all of this. And then there’s poor Elsa who is just starving for attention — and acting out a bit in school. Last week she even had a “talking to” by the principal. (For throwing an apple core up in the air in an attempt to land it in her lunchbox. So, you know, I don’t think she’s headed to juvey anytime soon.) She is very angry at Clio, at cancer, at everything. Can’t say I blame her.

I took her on a couple of special Mommy-and-Elsa outings over the weekend, including her first time skating, which was wonderful. But, of course, missing stuff like this pisses Clio off. And Clio pissed off on steroids is not a pretty sight.

On Sunday night, I looked at some old pictures and videos of our life last year, when the girls were healthy (or, at least, looked that way on the outside) and things were “normal.” I’m not sure why, as it was a bit torturous. I guess I just needed to be reminded of who we were. Who we are. It was, of course, bittersweet. Especially seeing Clio, being her happy, silly, adorable self.

And then to go into her bedroom to give her her 6MP dose, seeing her bald and swollen (the steroid cheeks have set in in earnest) and feeling terrible. It was one of those times when I felt, with keenness and pain, how completely our lives have changed in the past 6-odd months.

And yet — I have to remind myself of this — just a week ago, she was cheerful and energetic, going to school, going through her daily routine. And in a few more days, she’ll be that way again — at least, I assume she will — and we’ll get a bit of respite and (relative) normalcy before the next cycle begins again.

Most of the time, I’m able to hold it together pretty well. To get through the daily routine — work, household tasks, the girls’ homework — and even have fun along the way. But this last week has been really fucking hard. And, as Alastair articulated so well, the thing lurking in the background that makes it even harder is the fact that we can’t be 100% certain that all of this misery Clio has to go through is going to work. There is the chance that in spite of all of it, she could relapse, and we’d have to start all over again. We try not to think about this possibility; we really do. But there’s no denying that it’s there.

Meanwhile, I am taking solace in chocolate. And one of you dear readers (whose support and virtual friendship means so much to me, really) was generous and generally awesome enough to send me a gift certificate for a couple of hours of spa indulgence at Elizabeth Grady, which I’ve been holding onto, waiting for the right moment. That moment, I’ve decided, is later this week. THANK YOU!!!

And lest I sound like everything is COMPLETELY horrific, there are plenty of little moments of joy and levity. Taking Elsa skating for the first time was a really lovely experience. And Clio asking me when “Rapunzel, Let Down Your Bacon” was written, as she slipped into a Morphine-laced sleep, was pretty damned hilarious.

We’ll get through this. We will.