This month’s post is a tough one to write. I’m not entirely sure why, but I am attributing it to “too many dangling carrots.” Too many things are so close…and yet so, so far and that leaves me feeling very angst-y.
Maintenance is the phase that you pray for…after months and months of grueling front line treatment and, once it’s upon you, it’s not the instant “whew…this is so much easier” you hope for.
She has just enough hair to not be obviously bald…but not enough to really brush or do. She has just enough of an appetite improvement to take her off the meds in hopes it’ll hold…then SYKE! Just kidding. We are told she’s just healthy enough to start taking her out and about “normally” then BAM…103 degree fever. (In all fairness…that was not leukemia. It would have happened anyway.) We are just in this long enough to know what to expect with her chemo drugs because no NEW meds are introduced and then…oh no. You think you have this figured out? Ha! Wrong again! Let’s see what you think about the new limping side effect we’ll throw in.
If anything…I might even be MORE afraid right now than I have been. Maintenance is…well…all there is left. This is it. But its 16 more months of “it” so we have to get a wiggle on living without fear again. Except fear is crippling me. I haven’t yet determined what I’m scared of but after a lot of soul searching I think I’m afraid of never, ever feeling normal and carefree again. I don’t think I’ll ever feel comfortable leaving Kate overnight…ever. I worry I won’t ever trust anyone but Grandma to babysit. I’m terrified of taking my eye off the prize and allowing a selfish moment to creep in. And I’m scared I will always be…scared.
Kate, my love, in this, your 10th month with cancer, we have really stepped out of our comfort zone and mostly, it has paid off. We are now onto finger sticks and shots instead of weekly accessing. We’re working on potty training. We’re considering a big girl bed. We have had a glorious visit with family. We’ve had a friend visit for a short play date. We’ve had a birthday party for you and we even went out to dinner…in a public restaurant! We even took you out in public…twice!…on steroids. This is all very, very big stuff and is how maintenance should be. I’ll refrain from telling you how many of those things I almost canceled due to fear. I’m a daily, hourly work in progress.
As we sit here tonight, on the eve of a new cycle start (a big one with a spinal tap on Tuesday, which always sends me into a tailspin) I promise to always put YOU first above the fear. I can’t wait for your real life to begin because, baby, this isn’t it.
My cup runneth over,
Mommy