Welcome to Cancerland. (It Gets Better)

Day One

Since I started writing this blog, and since word of Clio’s diagnosis began spreading among my inner and outer circles of friends, I’ve heard from at least a dozen people whose children (or grandchildren) have just been diagnosed with leukemia.

Some have contacted me just days after the news, in complete shock. For others it’s been a few weeks or months. The latter group is usually reaching out to say that they’ve felt and experienced so much of what I have, and have appreciated the blog. The former group write to me almost in desperation, I think wanting some sort of comfort and assurance.

And it’s to that group — the devastated, terrified ones — I simply want to say: It gets better. (I know; that phrase has already been taken by this wonderful initiative, but I’m borrowing it.) At least, it did for us. And I think (and hope) it will for you, too.

The first 72 hours — starting at the moment the doctor at our local ER, where I’d brought Clio for a fever, told me that Clio’s blood test results were “concerning” — were the worst. Total and complete shock, heartbreak, terror, misery. I couldn’t imagine that I’d ever feel like myself again. I couldn’t imagine that my hands would ever stop shaking, I’d ever stop crying, or I’d ever be able to be brave or strong.

And as if dealing with the diagnosis and its many implications and ramifications wasn’t enough: On top of that, there was the awfulness of having to watch Clio go under anesthesia for the first time (for an MRI) — and the second (for a bone marrow biopsy and lumbar puncture), and the third (full anesthesia with a breathing tube, for surgical insertion of her port.) And on top of that was the stress of waiting to find out which kind of leukemia she had — one with excellent survival success rates, or one with not-so-excellent ones.

(Unfortunately, we never got total resolution on that question, but more likely than not, we’re in the excellent camp.)

But once Clio’s treatment got underway, and we settled into the hospital routine, things gradually felt more normal. Well, not normal normal. But we weren’t in crisis mode anymore. We were in coping mode. There wasn’t as much crying. Not as much fear. More eating. Lots more eating. Some drinking, also. (We can’t have been the only family that kept a box of wine hidden in our hospital room, can we?)

And once we were home from the hospital after Clio’s first, long stay, life felt a lot more routine, even though our routine had changed quite a bit.

And now, almost a full year out from that fateful day we brought Clio to our local emergency room with a fever, life feels like, well, life. Periodically, the stress and uncertainty of the situation catches up with us, and we feel suddenly bent under its weight. At times we feel wistful — painfully so — for the days “BC.”

But that initial, wind-knocked-out-of-us feeling is long gone. We’re optimistic. We’re excited to be approaching a big milestone: the end of this long phase of intensive chemo, and the beginning of maintenance (aka ‘continuation’). Meanwhile, we’re proud beyond words of both of our daughters. And, yeah, I guess both Alastair and I are pretty proud of ourselves, too, for getting through this with our sanity and our marriage intact.

So if you’re a new arrival to Childhood Cancerland, and you’re reading this: Welcome. I’m damned sorry you’re here, but it’s not quite as bleak as it looks at first. Get to know some of your fellow inhabitants. Take it day by day. Stay focused on the the task ahead of you now, rather than what the ultimate outcome might be. Let your child’s bravery or spirit or beauty inspire you.

You can do this.

Related:

Cancer is the New Normal

The Red Shoes and Other Thoughts on Adaptability