Monday, January 4, 2010

Why, Santy Claus, Why?

Why are you taking our Christmas tree, why? Oh, Cindy Lou Who, it's because I'm done with Christmas. It's because I love reclaiming my house from that very cluttery holiday. My qi was having a hard time moving around the place with so many pre-lit decorations jutting out from every corner. (And yes, it's also because I'm still a tiny bit bitter about those lights.)

It's a brand-new year; it's a brand-new Christy. Waking up a bit later than usual on New Year's Day (like, three hours later) with just as much fog in my head as there was in the air, I resolved to go green in 2010. So I skipped the shower and headed for the Motrin.

The only resolution I've ever kept in the past has been to make our bed every day. Our room could resemble the aftermath of a nuclear explosion, but as long as the bed is made, there is some order left in the universe. I can, at least, have some control over something. And here I am making you believe that I have done this everyday in recent memory, when in fact this morning I was more preoccupied with getting ready for clinic than doing the one-armed bed making dance. (Go ahead, try hospital corners with a small child on your hip!)

Today I just KNEW that Eve's ANC would be too low to get chemo. I mean, I had this feeling in my gut we'd have to spend another two hours in there waiting for someone to come back and tell us she didn't make counts.

We've talked about my instincts before, no?

Her ANC was 1218. All systems go. Doxorubicin, Dactinomycin, Vincristine...bring it!

10 down, 2 to go.

We're so close, I can almost taste it. But of course, you have to wear gloves and a mask and you're really not supposed to taste that stuff. It's poison, after all.

Back to clinic on Friday for more Vincristine, provided Eve doesn't show any more toxicity from the dose she just had today. I did have an appointment with my endocrinologist this Friday, but that can be rescheduled. Wilms trumps diabetes this week.

Me: Hi, I have an appointment for Friday that I need to reschedule.
Them: Sure. The next available appointment I have is for next Friday.
Me: Hmm...that's not going to work. [Chemo day]
Them: The next available appointment after that is Wednesday the 20th.
Me: I can't make that date, either. [MRI and CT scans]
Them: I can fit you in on Monday the 25th.
Me: I think I might have something else going on. [Nephrectomy, anyone?]

I guess I'll call back next month and try again. My phone only holds a charge for so long, you know.

And while needing to reschedule my appointment was good news, because it means that we are tentatively back on schedule with chemo, I still had a pressing matter on my mind- Natalie.

She thinks she gave Eve cancer.

No, sweet girl, you cannot give someone tumors. Why do you think that?
Well, I threw up one night a long time ago and then I gave Eve a kiss.
No, baby. That did not give Eve tumors.
Then who did she get them from?

Oh, boy. I don't even know where to start. How do I explain that cold and flu-sick is different than cancer-sick? Is sick even the right word?

Natalie has caught onto things very quickly. "Eve's medicines that she takes can make her food taste funny to her sometimes, Mommy. That's why she doesn't want to eat that right now. I can eat it, though!" Or, "Eve has a port where she gets chemotherapy to shrink the tumors in her belly." And, "When Eve's numbers get back up to a thousand, she can sleep in my room again!"

Now, how to make her understand you can't catch cancer?

4 comments:

  1. You must stay healthy so please make sure you follow up with your Diabetes check up and watch your diet and exercise.
    Kristal

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  2. I'm so glad you write this blog, Christy - I love your voice on here. Regarding Natalie and making her understand that you can't catch cancer - I just don't know. In 5th grade, a boy I liked decided not to date me for fear of catching diabetes. ;)

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  3. Ditto to anonymous posting. You have to take care of yourself. Who else will? :)

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  4. I'm following you because of lisa (the nccakelady). She asked me a while back to pray with her about Eve and your entire family. I've been following and not commenting.. but now I have something I can add. In 2009, I took in a child who's mother had AML (acute myeloid leukemia). He is just like my own child to me, so it was natural to say he could come live with me while his momma was treated in Chapel Hill. It was supposed to be 4 to 6 weeks. It was almost 9 months. Anyhow, back to the regularly scheduled program.. the catching cancer thing. We went through this too.. No granted H is older (10 and 11), but seriously, I think your daughter is much more mature than H is still... So, anyhow, in the beginning of his mother's illness, H also became terrified that something he had done had given his mom cancer. He sneezed on her. He didn't do his homework. You name it, he thought he was responsible. After stumbling and bumbling around a bit trying to explain the difference between making your mother, or make-believe mom, want to pull her hair out because you were refusing to behavior yourself, or the difference between sick to your stomach because you ate too much chocolate, or sick with the flu, or sick with allergies... I finally lit on cell sick as a way to explain it. We drew pictures of cells, or at least what we thought cells surrounded by blood looked like.. white and red... Then, I showed him how some of the cells got sick all by themselves with no help from anyone else.. I drew bows and arrows, fists balled up like they were throwing punches, little pistols and showed the cells fighting each other .. boys understanding fighting.. and this was how I finally got it across to him that it was nothing that he did and just was how his mom's body worked... well this and a tremendous amount of talking.. he kept bringing things up that he could possibly have done to cause it, and I kept re-explaining that cancer is not a cold or a sloppy wet kiss to some poor unsuspecting customer when you have a cold.. it took a while, but it did work.. figure out a way to illustrate it for Eve.. whether it's fighting cells or whatever.. and keep talking and reassuring her. I asked a psychiatrist friend about it and she told me that it is a common response in children... they assume ownership of everything and that everything is their fault... Hang in there Christy.. and like the others have posted, don't let your own situation deteriorate medically-- your children need you healthy!

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