Many Lasts (and one First)

Zero more rounds of treatment!

There are a lot of lasts happening in our lives right now on the cancer front:

1. Clio’s last visit to the clinic for chemo, on the 16th. We marked the day by handing out homemade cookies to every nurse, doctor and staff member who crossed our paths, plus a few patients and parents, too. We also gave cards to some of the people who have been a major part of Clio’s care — the chipper nurse who managed a lot of the details of Clio’s meds and procedures, and who was usually the one to access her port. The Nurse Practitioner who oversaw Clio’s treatment and who we’ll continue to see and communicate with occasionally over the coming years. The awesome infusion nurse who helped Clio get through all 60 of those nasty Asparaginase shots in her thighs last year. The music therapist, who’s one of Clio’s favorite people to see on her clinic visits. It was a strange, surreal, sort of anticlimactic day. (I ate a number of the cookies we brought.)

2. The last dose of steroids. (And don’t let the door hit you on the way out!) Now that she’s off the juice, I hope Clio’s appetite for things other than starch and salt improves. We still have several bags of frozen, store-brand tortellini and ravioli in our freezer chest, casualties of her changing steroid cravings. (For the past few cycles, her frozen pasta of choice was gnocchi.) If you invite us over for a pot-luck and I bring a pasta salad, you’ll know why.

3. The last nightly blood thinner shot at bedtime. Another one we’re more than happy to kick to the curb. Clio’s poor little thighs have been mottled with bruises for a year and a half. Be gone, bruises! Be gone, needles and vials and sharps containers in our house!

4. The last dose of 6MP. As I wrote recently, I’ve always found this part a little bit sweet — sneaking an oral syringe of medicine into Clio’s mouth while she’s sleeping, or half asleep. It’s a moment for tenderness and gratitude and reflection in the dark. Of course, I’ll still sneak into the girls’ rooms and kiss them while they sleep before I head to bed. I’ve done it almost every night since they were born and don’t plan to stop until we’re the ones who go to bed first.

Buh-bye.

5. The last dose of Methotrexate. It took a few tries, but we finally ended up with a warm, caring, reliable and conscientious visiting nurse whom we loved, who came weekly to access Clio’s port and draw labs and/or give her her Methotrexate. It was an emotional moment, saying goodbye.

There are still a few more lasts to come — another medicine that will drop off the roster, and the last time her port will be accessed for labs before it’s removed next week (a whole other source of anxiety). Then, for the next six months, only one prescription to keep after — a prophylactic dose of antibiotics while Clio’s immune system rebuilds itself.

With all these little burdens being lifted — with this crappy (horrible, terrible, shitty, lousy) little boat trip coming to an end at last — you’d think that I would feel lighter. Excited. Relieved. It’s how everyone seems to expect me to feel. But the thing is, I don’t really. Instead I feel disbelieving and disoriented and numb. More than a little anxious, and even a little bit sad. What is up with that? My daughter has spent the past two years being treated for cancer and there’s a part of me that’s sad that it’s over?

I suppose when something becomes part of your identity — even when it’s something that’s beyond rotten — there is a sort of grieving when you get to a point where you have to shed that skin, even when that shedding is ultimately a positive. I also think there was something empowering about the feeling that I was soldiering on and on, every day, to save my child’s life. And now I wonder: Will I lose those strong and determined muscles? Will my will turn flaccid?

Even Clio is decidedly moody about the whole transition, though she doesn’t always have the tools to articulate her feelings. (Hell, I’m not sure I do, either!) The meds and clinic visits and all the rest are old hat to her now, and when we ask her how she feels about treatment being over, the first thing she says is that she’ll miss the special stuff — getting to eat what she wants during steroid weeks, fun stuff at the clinic, the occasional perks, both big (Disney World!) and small (Beanie Babies after lumbar punctures).

When I asked her once if she ever worried that her cancer would come back, she said. “A little. But I don’t think it will. Because I’m a lucky kid.”

Your mouth to the fates’ ears, kid.

And for all my ambivalence and numbness and confusion over this shift to a new, new normal, when I think about relapse — which I think about all the time — my breath catches and I pray to the universe (even though I know it doesn’t make a whit of difference) to please please please please please let these goodbyes to the world of doctors and medicines and needles and nurses be goodbye for good.

Meanwhile: There is one “first” in progress. Today, Clio heads to sleep away summer camp for the first time! Specifically, the Hole in the Wall Gang Camp, where she’ll be among dozens of other kids being treated for (or off treatment for) cancer. I sort of hate the timing — her going away right now, in the midst of this transition. On the other hand it feels just right. I don’t know if she’ll escape homesickness completely, but I think it’s safe to say she’s also going to have a great time.

Singing with dad at Maine Medical Center. We’ve made some very sweet lemonade out of all the lemons we were handed.