"Mommy, Are You Dying?"

I had chemo this week, on Monday. As usual, I've been in a type of fog all week. My mother-in-law is here visiting, and asked me to describe it. She wanted to understand what I was experiencing, and, by extension, what my father-in-law might have experienced when he was being treated for pancreatic cancer.

I struggled for the right words, but came up with this: "I just feel like my head is in the clouds."

It's like my thoughts are fluttering types of insects now, buzzing all over the place without ever standing still long enough for me to grab hold of one. As chemo week ends, it gets slightly better, but I'm not sure I fully recover between infusions.

And I struggle with how to manage my emotions, how to answer difficult questions, how to be a more present parent.

***

After chemo on Monday, I thought I could take Quinn and my mother-in-law grocery shopping with me, so that Chris could get some work done. And I don't know if Quinn is going through a growth spurt or this is just him being three or me getting chemo, but mid-afternoons have been rough for us lately. Like he needs a nap but the best I can hope for is some downtime in front of the t.v. for an hour. 

So pumped up on steroids and not yet starting to feel any side effects (I didn't think), I attempted to take my 3-year-old to the grocery store. It was exceptionally crowded at Trader Joe's, and I tried to convince Q to sit in the seat of my cart rather than get his own cart -- those miniature ones that TJ's offers for kids, which are such an adorable idea in theory. But Quinn would not be deterred, and I didn't think I was up for the fight. I told him he could have his own but he had to stay right next to me. He said he would.

I can see so many of you with kids already know where this is going.

First thing inside, right next to the salads, as I was trying to navigate the limited space between the employee restocking shelves and the elderly couple in front of me, Quinn started ramming his little mini-cart into my ankles. To his credit, he was staying right next to me. "Please stop, buddy," I asked him gently a couple of times. He didn't. My ankles were taking a beating. "Quinn, if you don't stop, you're going to have to sit in my cart," I reminded him, my voice getting more stern as I got more annoyed.

People were starting to stare at us. My son had already turned this into a game in his head. (He told me later he was just trying to be silly.)

I couldn't do it. Not on steroids, not after chemo, not in a crowded store. So I picked him up -- at which point he started screaming and kicking -- and said nevermind, we were going to skip grocery shopping that day. He kicked a shoe off in the parking lot on our way back to the car. A stranger kindly picked it up for us. He refused to sit in his carseat. It was close to 100-degrees outside, and I was out of breath from the walk to the car with a flailing child in my hands. I was also out of patience. He kicked me in the ribs as I tried to wrestle him into his carseat.

Nearly HALF AN HOUR went by. He was screaming, I was crying, cars were lining up waiting to pull into my spot as I tried to wave them along. I called Chris, who says I was so hysterical he thought I'd gotten into an accident. And then I growled at Quinn in a voice that sounded (even to my own ears) like I was possessed to GET IN YOUR DAMN CARSEAT. He finally relented. 

Thank you, chemo and steroids, for making me realize that I can, in fact, growl at this three-year-old (in front of my mother-in-law, no less). This is not the parent I want to be.

We both calmed down on the ride home, and we talked about what went wrong. Quinn and I promised each other we'd make the next day better (and we did). 

This, after my nurses cut my steroid dose in half a couple of sessions ago so that I would have less emotional reactions on my chemo weeks. The flip-side is my chemo side effects are bigger and badder, and I'm pretty certain I still have 'roid rage. 

I have felt terrible most of this week, because that's what chemo does with less medication to offset it. A doctor I follow on Twitter suggested asking my oncologist about not taking steroids at all, to take the emotional effects out of the equation. Or it could also be that, after seventeen months on this drug, its effects are building up in my system and this is just the way it is.

***

Fast-forward to this morning. Quinn woke up next to me (as he is wont to do; he inevitably sneaks in at some point in the middle of the night), and sweetly asked for a hug. Then we had this conversation: 

"Mommy, why are you a little bit sad?" I hadn't been feeling a little bit sad, I didn't think. Nostalgic, if anything.

"Because you're growing up so fast, and I want to remember all of it," I said and smiled at him. 

"Well, I'll remember it!" he promised. Then, this zinger: "Mommy, are you dying?"

I hugged him tighter so he wouldn't see the tears that immediately came to my eyes, the emotion that made me feel like my chest might crack in two. "Not anytime soon, honey," I told him.

"I want to remember when you die," he said. Then, "What does 'dying' mean?" Why did we have to have this conversation at 7:15 on a Friday? 

"It means when someone's not here with us anymore," I tried.

"Oh." He thought for a minute. "But I want you to stay here with me in this house forever!" 

"I want to, too, buddy. I'll stay as long as I can, okay?"

***

Man, it's been a long week. Here's to easier conversations and fewer side effects and being a more mindful parent in the weeks ahead. Other parents, how do you talk to your toddlers about cancer? How do you manage your side effects with children around? And, finally -- more steroids or less?

Unhappy Pills

Have I mentioned to you guys how much I dislike steroids? They're the flip side of my happy pills.

photo source

My nurses still administer them to me with every dose of chemo, a preventative measure to stave off side effects like nausea. They also stave off sleep, leaving me buzzing well past midnight, which is too damn late for this old lady. You'd think rest would be a good thing, right? But the steroids, they will not allow it.

Instead, I lay in bed Monday night, exhausted but unable to sleep.

And as usual when insomnia strikes, my head started going to scary places. Damn you steroids and your potential for inducing mood swings. I wondered whether this chemo is working, what my scans later this month will show, how much of this period of our lives Quinn will remember. I looked over at Chris, sleeping soundly next to me, as I approached near panic with the shitstorm racing through my head. Quinn is finally sleeping in his own bed and suddenly, I had to have my family all in one place.

So I did the exact opposite of what any parenting book would tell you to do (especially after the sleep woes our household has experienced this year).

I tip-toed into Quinn's room, scooped him up, and brought him into our bed. And, yes, fine--judge me. Then feel free to ignore me--or smack me, whichever--if I ever complain about Quinn's sleep struggles again.

Just as we got back to my bed, Q woke up briefly to yell out, "I no want my blanket!"which woke Chris, who wondered what the hell was going on. I told him I'd explain in the morning. He persisted. "Are you okay?" he asked.

"No," I admitted. "But I'll explain in the morning," I whisper-yelled. I didn't want to wake Quinn up. Chris probably thought I'd lost my mind, but I just wanted to snuggle in close to both my boys, breathe in the scent of them, hold their hands as the steroids finally lost out to sleep.

Unlike my previous courses of chemo, I don't have to take three days' worth of this crap with each infusion, so you'd think my craziness and insomnia would have less staying power. Somehow, the steroids still stick around in my system for a couple of days, and while I'm sure they're good for something, they mostly turn me into a blubbering mess of worry, compounded by exhaustion.

Just to top it all off (as if crazy train over here wasn't enough), they also cause major breakouts. It's like I'm going through puberty again, which wasn't awesome the first time around.

Tonight, I fell asleep on Quinn's floor while putting him to sleep. Chris had to wake me up to come eat dinner. Three days post-chemo, and the exhaustion has caught up with me. I have a feeling I'm going to sleep like a baby tonight and feel like a brand new person tomorrow morning. Take that, unhappy pills.