Sunday, June 27, 2004

"Where has my Energizer Bunny gone?"

End of Week 3 of DI #2

Kendrie is starting to remind me of a helium balloon a few days after a children’s party. A sad, droopy, purple dinosaur balloon that keeps dipping lower and lower as the helium level drops. Of course, she’s not purple. Or filled with helium. Or a dinosaur. And even if she was, I don’t think dinosaurs demand that their dino-parents fix them eight bowls of Kraft Mac & Cheese every day of a steroid pulse. But a little droopy and wilted just the same. Lots of naps, lying around on the sofa, puffing up from the steroids and the non-stop appetite.

She’s also complaining a lot of back pain which of course makes us nervous. Bone and joint pain is often a primary complaint at the time of diagnosis. It was for her anyway. So never mind that bone and joint pain is also a common side effect of the chemo meds, it’s still a little frightening to hear her say it out loud and to remember the last time she complained like that was when the leukemia made its uninvited appearance in our lives.

You know that silly comment you make to people when you are going to flip a coin to decide something--- “Heads I win, tails you lose” (am I the only one who says that?) Delayed intensification chemotherapy is a little like that. I look at Kendrie, laying on the sofa, pale and tired; sitting in a chair in the backyard watching Blaine build a deck and ignoring the swing she so eagerly ran to pump herself on only a week ago; bloated and puffy and ravenous from the steroids; and feel frustrated that this is how she will (most likely) spend the majority of her summer. This is supposed to be *summer vacation* for children, spent swimming and running and playing and chasing fireflies. I get angry that cancer is cheating her out of this rite of passage. Heads, leukemia wins.

Then the next emotion to play through my head is guilt that I have the nerve to complain about the very treatment that is saving her life. Who am I to gripe about a few lost months? She’ll have summer after summer after summer for the rest of her life to make up for this lost time. It’s like being given an expensive car and complaining about the high cost of gasoline. No, forget it, that’s a bad analogy. If leukemia is an expensive car then I’ll take the bus. But I gripe about the effects of chemo, then feel guilty, then think about all the other kids who have it a hundred times worse than she does with complications and relapses and transplants and hospitalizations, and feel guilty some more. Tails, I lose.

Have there been any official studies done about the number of cancer parents who wind up in therapy? Or on thorazine?? Or on bell towers??? Or even worse, on Jerry Springer????

The good news is that steroid week is over as soon as she takes her last dose tonight (can you hear the Halleluiah chorus?) and we have this week off from chemo. We will be getting her blood counts checked on Wednesday but can do that locally, so no need to drive to Atlanta this week.

We just have to buckle down and get through this last phase, DI #2, before beginning maintenance therapy in August. Everyone says, “LTM (long-term maintenance) is so easy …. Just wait and see how much better things are when you get there” and I have to be honest and admit things haven’t been that difficult for us even up to this point. So maybe I need to keep my whiny mouth shut and be glad for small favors.

Well, I should go. Dinosaur-girl is hollering for more mac & cheese. I hope everyone has a really good week.
Love, Kristie

WORST PART ABOUT HAVING CANCER TODAY: My dad is building this really cool deck in the backyard and all I had the energy to do was half-heartedly swing a hammer at a few nails in a board. Surely Bob Villa didn't suffer this sort of indignity???

BEST PART ABOUT HAVING CANCER TODAY: The self-satisfied knowledge that thanks to me personally, the employees at Kraft Macaroni & Cheese have job security as long as I am on steroids.

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