Nearing the Home Front

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.

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

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. 

It’s all become part of the rhythm of our lives. It affects how we plan our time, how our morning and evening routines go, and how we pack up for trips — even if it’s just a quick weekend with the grandparents. It’s just normal.

And I’m sure we’ll adjust to the logistical changes quickly. But what’s really hard for me to believe is that we won’t end up more tightly enmeshed with the medical world again. It’s not quite fear of relapse I’m talking about — although I have plenty of that, too. It’s this disbelief that everything will, from here on out, possibly just be normal in our lives. The way it was before Clio’s illness. No procedures, no inpatient stays, no nothing, except for the occasional — and increasingly infrequent — blood test at the clinic. (Barring any serious late effects of chemo, which can happen…) What’s that going to be like?

And what about the nurses and doctors we’ve come to know and trust and on some level love? What about the other families we’ve met? What about the unwanted but comforting feeling of camaraderie and belonging?

I wonder if it’s not unlike the feeling members of the military have when they’re about to come home after an overseas deployment. You’re in this intense and dangerous and always-on-guard setting for a long period of time, with a singular kind of camaraderie with your fellow soldiers, and then you come back home, and you’re relieved, but it’s not the same. It can never be the same, because you’ve changed. And the transition can be brutal. (My apologies here to military folks who have been in this actual situation, because I know it’s not really the same — it’s much worse — and I can’t possibly imagine it. Just thinking metaphorically.)

I’ve heard of some parents really breaking down after their kids’ treatment. Probably not just out of anxiety about relapse (though I’m sure that happens), but out of the emotional release of having been in adrenaline (combat?) mode for two years or more — holding emotion far enough at bay so they can just focus on putting one foot in front of the other, getting the treatment done, being strong — and then suddenly being able to let their guard down. To change metaphors, maybe like the way young children hold it together while they’re at day care or preschool or the grandparents’ house, then burst into tears the minute Mom arrives to pick them up.

I wonder if I’m going to lose it. I wonder if I’m going to get hit by a tsunami of pent up emotion. I hope not. But I’m bracing myself for it nonetheless.