What does this mean?
Only three more doses of vincristine. This is the stuff largely responsible for the fact that while Clio’s got lots more hair than she did when she was getting doxyrubicin, it’s still pretty thin and not growing very fast. I expect her to be sporting a luxurious mane by Fall! Vincristine is also responsible (we think) for the fact that Clio still can’t walk or run at her pre-cancer speed, and her gait is a little funny when she does. Her Olympic track and field training will commence in August.
Only 12 more weekly doses of Methotrexate. Three of them, she’ll get at the clinic when she gets her vincristine. The rest, I administer myself at home. Since last summer, two weeks out of every three, we get a home visit from a nurse, who accesses Clio’s port, draws blood for labs, and leaves the port accessed. Once Clio’s lab numbers come back, usually the next day, I get the go-ahead to give her her Methotrexate. It’s delivered from an infusion company, along with syringes full of saline flush and heparin and gloves and alcohol wipes. And I get to play nurse.
The process made me insanely nervous at first, but now it’s become second nature: Alcohol wipe, saline flush, alcohol wipe, chemo, alcohol wipe, saline flush, alcohol wipe, heparin lock. In fact, the hardest part is getting the damned dressing off the port needle at the end. (Imagine having to peel the world’s biggest, stickiest bandaid off your child’s chest. Oh, and the band-aid is covering a needle that pokes into your child’s skin.) Then I pull out the port needle — still sort of scary — and off she goes.
Only 42 more doses of 6MP. I give this to Clio at bedtime, often after she’s been asleep for a couple of hours, because it has to be given on an empty stomach. Sometimes she doesn’t even wake up, and I just gently squirt it in while she’s half asleep. There have been some funny sleep-talking and sleep gesturing incidents with this. Last night when I gave it to her, she kept holding up two fingers. I’ll take two doses, please? Peace? Victory? Who knows. I just play along with it. “OK, two. Down the hatch, sweetie. Peace, man.” It’s actually sort of cozy. Maybe in some weird way I’ll miss the 6MP.
And — PRAISE GOD — only three more rounds of steroids. These I will not miss ONE IOTA. This has been, hands-down, the worst drug of all. (With the twice-weekly, big-ass needle-in-thigh Asparaginase shots last year a close second — shots which, by the way, cost $30K each for some ungodly reason. Thank God for insurance.)
It’s hard to express just how completely steroids transform Clio’s mood and behavior (which is probably why I’ve written about it, like, two hundred times here. sorry.). She becomes so cranky, so fragile, so sensitive, so needy, so obsessed with food…it’s astonishing. I’m sure if you hooked her up to some kind of biofeedback machine during steroid pulses, her stress levels would be through the stratosphere. As would mine.
What makes the steroid cycles even worse is how miserable they make Elsa by proximity: First of all, Clio’s neediness — whether the need is food or cuddling or some obsessive compulsive need or complaint — means Elsa loses out on parental attention. Then, there’s the fact that Clio (through no fault of her own) gets totally pissy with her. So Elsa is pissy back. A fight between a 7 year old on steroids and a 7 year old who’s isn’t is absurd. And not in a fun, Marx Brothers sort of way.
Finally, because our activities during steroid rounds are limited by Clio’s inability to go anywhere or do anything much more than watch TV or be read to or sleep, Elsa gets stuck at home too. (I’m speaking primarily of weekends, here — and weekends are when the cycle peaks.) If Alastair is around and one of us can go out and do something with Elsa while the other one stays with Clio, it’s better. But he frequently gigs on weekends and sometimes (like this weekend) travels, so it’s just me and two very cranky little girls, stuck in our house. UGH.
Oh yeah, and as I’ve mentioned, on steroid weeks it’s become a ritual to go to The Border Cafe. (Which Elsa is now completely sick of.) This part’s not SO bad. It would be better if they had any decent wine there. Although that would probably make me eat even more of the damned chips.
Did I mention I hate steroids?
Of course, there are all kinds of other emotions tangled up in the fact that Clio’s treatment is about to end, which I’ve written about here before and will write about again. But today, having just made it through another round of steroids, the only thought on my mind is HALLELUJAH!
PS — Go congratulate my pal JulieSue, whose son is on the same schedule as Clio, and also on the final countdown.