How ARE you?

It has come to my attention that some people miss my writing. And while these longings come mostly from blood relatives who may have a tinge of bias, I am still deeply flattered.

It has also come to my attention that some people would like to know how I’m doing.

“How are you?” It’s a question people once asked with such nonchalance, a throwaway formality, but now carries so much weight.

It’s gone from “How are ya?” to “How ARE you?”

But don’t worry, I won’t spend this whole post whining about how people care about me too much.

To be honest, when people ask me how I’m doing, I often think they’re referring to the whole being a mom thing.

Because when your youngest son has been waking up before dawn every day for two months and your eldest has decided he only wants popsicles for breakfast, naturally you assume that’s what people are referring to.

And then you remember the whole incurable illness thing.

So, regarding that thing…

I received another clear PET scan last month… hooray!!!

As I’ve said before, this phenomenal early response to the first line of treatment is an indicator that I will continue to get clean scans for the next few years.

But cancer is mysterious. There are no guarantees. So I’ll try to be a little better about announcing these victories along the way!

The only major cancer-related news revolves around Ibrance, the chemo pill I mentioned in my last post.

I was taking Ibrance in a four-week week cycle… three weeks on, and one week off to let my body recover.

The first round was rough, and I wound up with a very low white blood cell count, something my body keeps insisting on doing. So we switched to the lowest dose possible.

After that, things were… fine.

Half the time (during my off week and the first week back on the drug) I felt fit as a fiddle, ready to run, wake up at the crack of dawn with Peter, write, explore farmers markets, make wholesome dinners for my family. Half the time, I loved being alive.

The other half, I felt terrible. I felt exhausted and weak. I got mouth sores. I was less patient with my kids and more irritable around my husband. I felt anxious and out of control. Being alive was hard.

During these low moments, there were times when I genuinely thought my family would be better off without me. That I should just move to a faraway country so no one would have to deal with me anymore.

It was a scary place in which to find myself. I hadn’t suffered those kinds of lows since my drinking days. And these lows marked the only times since getting sober five years ago that I found myself thinking about having a drink.

Almost as bad as suffering these lows was the realization that there was nothing I could do to prevent them from happening.

For the first few cycles, when I was feeling good, I thought I could make my body stay in that happy place. I could control it.

So, I’d hit the gym, sweat it out at the sauna, eat all the right stuff, go to therapy, go to A.A… I’d do everything I could to keep my mind and body in perfect working order.  

I thought that if I did everything perfectly, maybe this round would be different.

And then, two weeks later, like clockwork, down I’d go.

And every time, it was bitterly soul-crushing. There was nothing I could do. The chemo was running the show. And as a staunch perfectionist, I don’t like when things are out of my control.

These chemo-induced rollercoasters brought me back to when Winston had colic.

Colic is defined as three hours or more of crying, more than three days a week, for at least three weeks. (Hm, sure sounds a lot like me these days!)

In other words, colic just means your baby cries all the time.

Even worse, supposedly there is no cure. You just have to wait for your baby to outgrow it. And that can take months.

I was in total denial at the beginning of the colic phase. I simply didn’t want it to be true. I didn’t want to be told that there was nothing I could do to prevent my son from crying practically all day. I was a math whiz in school. I solve problems. I find answers. So when our pediatrician told us we just had to wait for him to grow out of it, I decided that was unacceptable.

Not on my watch!

Thus began my endless search for answers. I bought different sleep sacks, bottles, nipple sizes. I hired a breastfeeding doula. I tried a myriad of different formulas, from store bought to European exports. I changed the fabric of his pajamas—certainly he was just hot! I switched from rocking him to sleep, to swaying, to bouncing, back to rocking. I read countless articles and watched dozens of YouTube videos on tips and tricks to sooth our unhappy little baby.

Side note: I remember how annoyed I was with these videos. The babies always seemed happy before the perfectly groomed and well-rested YouTuber mom started working her “magic.” You have a happy baby to begin with, you clown!! What the hell do you know about curing colic!

But amidst all the crying were these brief periods of relief when I thought something I’d done had actually worked. For a few hours, or maybe even for a whole day or two, Winston would seem better. He was calmer. Happier.

He’s cured! It was the pacifier all along!

And then… just like my chemo dips… the crying returned. Like clockwork.

If I didn’t have children, maybe I’d suffer through these dips. With less responsibility, maybe being benched half the time wouldn’t matter as much.

But I do have kids. And it does matter.

Because I’m not a very good mom during these dips. Or a good wife. And I’m probably the worst to myself.

So I’ve decided not to take the chemo pill anymore.

Now, don’t get too freaked out. I’m still getting my immunotherapy infusions every three weeks, like a good little cancer patient. I’m not “refusing treatment” by any means. I’m just refusing this small part. And it really is a supporting role, not the starring character.  

Recall that the only reason I started taking the pill was because one study was published about how it might help patients with my diagnosis delay progression by a handful of months.

But I’m not thinking of my life in months. I’m thinking of my life in years.

I want to live a long life. And I think I significantly decrease my odds of achieving this goal by taking chemo pills.

Ibrance might work well for some people. But I can’t compare myself to those people. Because they might not have my history of anxiety and depression. Or alcoholism. Or have a one- and a two-year-old to raise.

We’re holistic creatures. And when I’m not taking chemo, I feel so much better in mind, body, and spirit.

The world feels bigger. I feel freer.  I’m nicer to my kids, more loving to my husband. I cook better, I write better, I run faster.

And that’s the kind of life I want to live. And that’s the kind of life that I think will keep me healthy for a long time to come.

So anyway… that’s how I’m doing.

PS – To those who missed my writing, I apologize for the long silence. I’ve been working on another project, which I’m very excited about (though still keeping it close to the chest!)

Thanks for your ongoing patience!