Monday, November 03, 2014

The Trauma of the End of Treatment

So, today marks the start of our last round of active treatment. In four (or, you know, eight or twelve) weeks, we will move on to Maintenance. Our lives will return to some semblance of normal.

But that's the thing. I've kind of known for a long time that normal -- if it ever were a part of our particular plan -- is no longer in the cards. First of all, maintenance doesn't mean home free. Adi will still be having intrathecals, he'll still be taking oral chemotherapy at home, and he'll still be in the clinic every two weeks for bloodwork. His stomach will still be horribly scarred from his half-dozen surgeries. And our hearts? Oh, our hearts.

So many things cannot be unseen, cannot be unheard, cannot be unknown. Too many names jump out at me and make my heart twinge, hurt, ache. Fevers will still send us to the emergency room, bruises on my son's body will still make us panic.

But the thing is, people won't expect us to panic. People will start to expect us to return to normal. People will start to expect things from us. When the list goes up at the gan and all the parents are asked to fill in what they'll bring -- a cake, a quiche, a fruit platter -- I won't be able to just ignore it and shrug my shoulders. When the school calls, they won't use that tone, the one that says, "We know. We understand that it's impossible to expect you to show up to this conference about your future serial killer child. We'll just handle it on our own." They'll get annoyed. They won't let me reschedule endlessly. When my kid forgets his homework three days in a row, there will be consequences.

There's no switch to flip that takes you back to normal, is the thing. It takes time to get there, and sometimes you never quite make it all the way. You get close, close enough to an approximation of normal that you can fake it in your daily life, and only the people who know you well can tell the difference. Only the people who know you well can see that you don't quite smile the same way. Your laugh is a little different. You're just a tiny bit altered, but that tiny bit is the part that contained the essence of carefree happiness, and that's gone.

"You forget," people told us. "You forget what it was like, you forget the names of the drugs, you forget the nurses."

I'm not sure that's the case. Maybe for the lucky few, it is. Maybe there are families who come in, get treatment, and move on. But a family like ours, a family that was already scarred, comes to treatment already wary. Trust no one, we think, even when we don't realize we're thinking it. It won't be as easy as they say.

And so we emerge, blinking, into the overly bright light of day. We reach for our sunglasses so that no one will notice that sometimes we still cry. We make sure things look okay from the outside so that no one suspects that something at our very core may be rotten.

We create an approximation of normal that is close enough to pass most of the time.

But the scars are still there.


isf said...

I don't disagree with what you wrote, but, there is more.

Every family has something. It may not be as massive and horrible, but if you don't know their scars it is because you don't know that family fully.

The normalcy of resuming your turn at the gan or other activities is very important. You want to comfort and reassure your other four children that they matter very, very, very, very much. Your strength is necessary to give each of them the best chance at a confident and happy life.

I suspect (as does the oncologist) that I will never be as physically strong as I was 13 months ago, and I will never be as unafraid of catastrophic illness. But I am better than I was ten months ago, six months ago, four months ago. My faith is unshaken. I think I am alive for some purpose, perhaps to give you unwanted advice. You are here for some purpose and it is clearer because you have needy children who want Mommy to host their friends or go on a class trip to teach them a cool trick or rub their backs. So be strong and allow yourself only a few minutes each day, whether at Sh'ma kolenu, or in the shower, to weep and to shake.

Sending love and strength and understanding and prayers.

Crystal T. said...

I haven't heard anyone refer to maintenance as end of treatment before. Maybe that's a regional difference? I just haven't even phrased it that way to anyone. I just keep telling everyone that Jack is done in March 2015. I still get the incredulous, "he's still on chemo??" but no one expects that our lives have gone back to normal, at least. (Although the help has definitely tapered off.)

Maintenance WAS supposed to be easier but...for us it's been SO HARD. Harder than the other two phases combined.