Cancer is the New Normal

What a difference a few days makes. The first 48 hours after we were admitted here at the Floating Hospital were absolute hell. I barely ate a thing, kept feeling like I was going to faint (I very nearly did once in the middle of the first awful, sleepless night) and cried constantly. Well, not, you know, non-stop. But, like, very frequently. Between that and almost no sleep, I looked more possum than human. My hands and feet felt tingly, and I literally couldn’t move at full speed.

I left the hospital for a few minutes on the first full day (or maybe it was the second?) to get a little air, went into a CVS to get a few things and left with a completely bizarre assortment of items: Chapstick, a crossword puzzle book (?), jelly beans (??), a copy of O Magazine, stool softener, and a gigantic bottle of Benadryl (I assumed that every night I wouldn’t be able to sleep, so I figured I’d need to knock myself out.)

Flash forward just three days: Today, I actually washed my hair (huzzah!) and — get this — put on makeup. (I know, right?!) I even went back to our house for the first time since we came here. Disorienting, but it felt good to straighten up some stuff, get a few things. The ride there and back was sort of nice, too: Yachts moored up and down the Charles River and lawn chairs along the banks, all ready for tonight’s Pops Concert and fireworks. On the way back here, I caught glimpses of the tall ships in the harbor, all decked out with flags, and saw a few fighter jets zoom by doing tricks.

In sum, I feel like the ground is back beneath my feet. I can smile again, even laugh, make jokes, find the humor in stuff.

I guess it feels like the worst is behind us (knock on wood). Clio’s gotten a CT-Scan, a bone marrow biopsy, and then yesterday, a lumbar puncture, dose of chemo into the spinal fluid, and a port put into her chest. That’ll be there for the next couple of years, and she’ll get all her medications through it and blood drawn out of it.

Yes. A couple of years. That’s been one of the biggest shocks of this whole thing: realizing just how long this is going to be a part of our lives. We’ll be here in the hospital for up to four more weeks (and that’s assuming all goes well) while Clio has her induction therapy — a veritable buffet of medications and chemotherapies with lovely names like Cytarabine and Pegaspargase and — the loveliest all — Vincristine. (Nice name for the drug that makes you lose your hair. Also, it keeps putting fucking songs from Phantom of the Opera in my head. Christine, Christine…)

And, of course, even once we leave, there will be a couple of years of medications and clinic visits and occasional inpatient procedures and potential complications. Clio won’t be able to start kindergarten in the Fall, poor kid. And the soccer that she was so looking forward to is probably out.

The good news, though, is that Clio has the most common, most treatable form of leukemia there is — ALL Pre-B — with success rates (I much prefer that to “survival rates”) upward of 90%.

We’ve also moved into some pretty sweet digs here at the hospital. We’re in the Cam Neely Bone Marrow Transplant Ward — a small, locked ward with just 4 other families, all with kids who have cancer. (Though they’re not necessarily having bone marrow transplants. We’re not, so far.)

Cam Neely —  for non-Bostonians and sports ignoramuses like me — was a big famous Bruins player, and he donated the money to create this little haven within the hospital. We’ve got a spacious room with storage cabinets, a fold-out couch, a mini fridge, nice TV and DVD player, and a view. Our room (unlike the others on the ward) is also totally decked out in Bruins logos, with framed jerseys and a hockey stick mounted on the wall. Pretty silly.

There’s also a small “parent lounge” and kitchen, private sleeping rooms for parents, a playroom, and kitchenette. The nurses are dedicated for just this ward, and I gotta say, they’re way hotter than the nurses up on the 7th floor general pediatric inpatient ward where we started out. Yes, I’m heterosexual, but that doesn’t mean I don’t know a hot (female) nurse when I see one.

Well. I’m amazed I managed to write this much at a stretch when there is so little time to sit in one place for long at all, between helping Clio eat / get to the potty / stay entertained,  talking to doctors and nurses, updating our parents, taking care of “real life” stuff, etc. etc.

I do feel, though, that writing about all this will keep me sane. And as a writer, long-time blogger and exhibitionist, apparently (though hopefully I can resist exposing myself to the hot nurses) I just can’t imagine *not* writing about it all.

Thank you again — immensely — for all the well wishes, sympathy, good juju, prayers, chants, voodoo and other forms of moral support you’ve shown me and my family.

xoxo

JR