I have got 27 radiation treatments under my belt. Just one left! That’s good, because these burns are bad enough right now, in my opinion. They have switched me over from using the lotion that looks like Vaseline to a new one, one with some badass antibiotics that they use on people they’ve pulled out of house fires. I am not a doctor or an E.M.T. or a person who works in the E.R., and I never could be one. I don’t like looking at stuff like this, and it’s on my own self. The only other place I have seen burns like this on a person is in South Africa, where people in the townships cook on kerosene stoves in dodgy conditions, and sometimes one gets tipped over or it blows up, and you see badly burned people in the line at Pick n’ Pay or wherever. I look like that now, only not on my face and hands, but one side of my chest and one armpit.
A couple days ago, I did have words with my radiology techs for not telling me how bad this was going to get, when clearly, they knew.
“We don’t tell you,” one of them said, “because we don’t want you to freak out.”
But then in the shower one morning, there were lots of bits of black stuff on the floor, and damn if it wasn’t burned pieces of my own skin.
I freaked out.
I told her it would have been better to have known the score in advance, actually, and she said, “Well, for YOU, maybe, yes, but not for most people.”
What does that mean? Most people I know—most women, anyway—can handle pain. For Pete’s sake, I’ve had three babies. If you tell me, “This is going to hurt like hell, but it might just save your life,” I can totally deal with that. But if you tell me to expect a minor sunburn and some itchiness, and in fact I am going to have second-degree burns and charred flesh, I might not be mentally prepared. In any case, don’t be lying to me about it.
So a couple more cancer lessons learned: 1) Some of your caregivers will lie to your face, and you’d best figure out which ones, and when they’re doing it; and 2) I can totally deal, anyway. Turns out I am a tough little bastard.
Meanwhile, back at the ranch…
Some weeks ago, somewhere in this blog, I mentioned that my youngest kid, Matthew, was having a hard time with my situation. He is eight years old. Last spring, after my diagnosis, we started seeing some very weird behavior in him, very unlike his normal self. He had fits of irrational anger, almost always directed at me, although, by August, everyone in our immediate family had been on the receiving end at least once.
Then, this summer, there were some heartbreaking bouts of clinical depression, where he did not want to go to camp, or to the skate park, or anywhere. He wanted to lie on the couch and cry. For days at a time.
And then there were some panic attacks. We could be getting ready to go somewhere in the car—possibly some place fun or harmless, like Target or a friend’s house. And Matthew would burst into tears and beg us to not make him get in the car.
“What if we crash?” he would say. “What if I get sick? What if there’s another earthquake, only this time the buildings all cave in?”
Clearly, the little guy was going through his own private hell. So we sought care from an excellent psychiatrist recommended by our pediatrician.
(I wrestled with whether to go public with all this. Mental health is a personal thing. But only my friends are still reading this blog, anyway. And Matthew has had a couple of panic attacks so publicly, at school, in front of everyone, that it seems ridiculous to pretend any longer that there’s nothing going on.)
The psychiatrist initially thought, as did we, that Matthew was struggling with fear over my illness and whether I would die. We were all struggling with these things, at that point, so this made sense to us. A few rounds of talk therapy would set him right. Teach him some coping skills, and he’d be fine, especially since I seemed to be getting better. Later, after I had my surgery and it was behind us, he would improve.
Only, my surgery came and went. And, although I was getting better every day, he wasn’t.
One day in August, our psychiatrist said he thought there was more going on. Matthew wasn’t just having problems handling my cancer. This was much bigger, an actual anxiety disorder, a mental illness. My own illness wasn’t the cause; it was merely the trigger, the straw that broke the camel’s back.
We spent at least a month digesting that. We thought once school started and a regular routine began, Matthew would feel better. We researched the medication they wanted to put him on—Zoloft—and saw the black-box warnings on it that tell you that this can cause suicidal thoughts in children. Gulp.
We talked to friends who had been down this road. We took very, very seriously their good advice that sometimes, children are misdiagnosed because mental illness can present differently in children than in adults. A misdiagnosis, followed by the wrong choice of powerful drugs, can cost you dearly in terms of time and misery.
In the end, though, he was already so miserable that I couldn’t not do anything any longer. He was asking us, daily, was there nothing we could do to make him feel less sad?
One thing that helped me make the decision was speaking with one of my cousins, who has suffered bouts of depression since childhood. She said she could remember being Matthew’s age, and feeling utterly despondent. She said she wished to hell someone had helped her when she was a kid, instead of years later.
So Zoloft it is.
It’s been a few weeks, now. We think it is helping, though not completely. We are told it can take a long time to get the dosage just right, to optimize those serotonin levels or whatever brain chemicals are causing his demons.
We haven’t seen the fits of anger for some time now. He hasn’t been lying on the sofa crying. He seems much happier.
But the panic attacks are still with us. Everyone in the third grade, and some of their parents, witnessed a doozy the day the class was supposed to take a field trip to Skyline Caverns. Matthew would not get on the bus. They could not make him. Eventually, his poor teacher called me to come get him and take him home; they couldn’t delay any longer.
A week later, another field trip, this time to St. Mary’s City. Another public panic attack. But this time, I skipped my radiation treatment so I that could go along as a chaperone. When the crying and the shaking started, I put my head down, horns out. I made him get on the bus. He cried all over me for a while. He begged to get off the bus. But as soon as the bus started moving, he settled down and was fine. It was a great day. We both had a blast.
This week, at his Tuesday night soccer game, another perfectly-timed panic attack struck. Matthew, who has played soccer for almost four years and loves it, begged me not to make him go. He was sure he was going to throw up. I didn’t know what to do. I called the psychiatrist on the phone for advice, but could not reach him.
This was not a behavior problem. God knows Matthew didn’t want to be terrified of one of his favorite things. Usually, in the normal course of motherhood, I am inclined to encourage my kids to get up and face their fears. I wanted to make him get out there and play. You get back on the horse after you fall off. But is that right, when your kid is mentally ill? I mean, I knew by now this was Irrationality speaking. Rationality had left the building. If I made him play, was I just being cruel?
His head coach, puzzled, said Matthew said he has a stomach ache. Maybe he shouldn’t play.
I gave him the ten-cent abridged version of what was going on. Matthew’s stomach is fine, I said; this is mental illness.
There. I had said it out loud.
This is new to us, I said. I am not sure what to do. I am making this up as we go.
Both his coaches, bless their hearts, took all their cues from me.
I told Matthew he was utterly brave, and he should get out there and play.
“I’m not brave,” he bawled, right there on the sidelines, in front of all his friends. “I’m scared.”
I told him get out there. He was crying. I was crying.
His sainted coaches put him in the goal, his favorite position. They found him some goalie gloves. He played goalie the entire quarter, weeping the whole time.
He made four great saves.
Afterward, his coaches praised him for his play, and for his bravery. Not one of his friends teased him for crying, or hassled him at all, that I could tell. And their kindness and understanding mean that Matthew has a fighting chance next week, next game, to get back on that horse again, and tell his demons to shut the hell up and let him play soccer.
“Don’t ever tell me you’re not brave,” I told him. “You are the bravest person I know.”
He was exhausted, but in some way happy with himself. He seemed to be considering the possibility of his own bravery. He ate a big lunch. He was in a good mood the rest of the day.
Turns out, he’s a tough little bastard.
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