Finding value in being vs doing

Hi there! Checking in toward the back part of my first cycle back with a mostly positive report.

It was weird to be going back into treatment—especially given how different it is in a COVID-19 world. There were no visitors allowed, and only about half as many patients. Oncologists are delaying / getting less aggressive with treatment in light of the pandemic, which is scary in and of itself—and probably explains why my doctor decided to skip Vectibix for now, and maybe also why nobody wants to talk about what comes after my four cycles of FOLFIRI.

I kept an N95 mask on, and wound up feeling dizzy after treatment—which may have been from the chemo, but the nurses said is more likely from the mask. And I was just SITTING there for a few hours wearing it; I truly cannot imagine how the medical front line is managing to work with their PPE on.

Side effects have been manageable. Steroids had me flying Monday and Tuesday. By Wednesday afternoon, however, they wore off, and I couldn’t maintain consciousness past 4 pm. Fatigue continued most of Thursday and Friday. Fatigue is weird—it’s not the worst side effect, because you just feel tired—but there’s also absolutely no way to control it. Fatigue, unlike tiredness, isn’t cured by rest. But you rest anyway, wake up and try power through an hour, only to eventually give up and lay back down again. The net effect is more emotional than physical, and I spend a lot of time complaining to Per that I feel lazy, to which he responds with unfailing patience, “You’re not lazy; you’re on chemo.”

I’ve spent a lifetime feeling valuable for doing—it’s tough to adjust to feeling worthwhile for just being.

By the weekend I was feeling more energetic, and almost normal by Sunday, when my GI side effects set in. Less fun than fatigue, but not worse than I experienced on FOLFOX, and manageable overall if I am proactive with meds. I had a day or two or suppressed appetite, but nothing terrible —and by Monday, I was in the mood to cook again for the rest of the week.

So overall, so far—my fatigue is worse, but everything else is the same or better—and in particular the important things.

Which is good, because as I’ve returned to treatment, I’ve noticed something about my mindset.

The first time around, I tried very hard to think of cancer as a journey and not a battle. I knew on some level that once you have cancer, you will never really feel done with it—but somewhere along the line, I got over that, and in what’s probably a natural human way, I started to focus on a goal of beating cancer so I could get back to real life.

And then I did.

Actually I snapped back to my “old life” in a way that kind of alarmed me. On the one hand, it was such a relief to sink back into the known. But on the other—shouldn’t cancer have CHANGED more? Changed ME more? Ha, turns out cancer wasn’t quite done with what it had to teach me.

My head feels like it’s in a different place with my recurrence. This time around, cancer doesn’t feel like some intermission—an inconvenient break before life goes back to normal. Well, I guess it could be—and I hope it still is. But it could also be the start to me managing my life with cancer. Which means I really can’t afford to fall into the trap of waiting for this to be over—I could lose half my life to that!

I really have to find a way to live through it, and make it count, adjusting to give time and space and patience and self-forgiveness for the fatigue and the unproductive hours; the pills and the dashes to the bathroom; the flashes of anger and of sad.

#cookthruit is the hashtag that bounced onto my screen as I flipped away from this post for an emotional breather and scrolled over an Epicurious recipe on Facebook.

Yes! I thought. I’ll cook through it. And bake through it and snuggle through it and love through it. COVID-19 may keep me distanced, but I’m closer than ever to my favorite people, and I’m not going to take that for granted.

I’m halfway through a weekend filled with delicious food, fresh-baked bread, beautiful views, walks, music DJ’d by Per, TikToks with Evelyn, a fire and s’mores. Whenever I stop for a minute to survey the scene, I cannot believe how lucky I feel to be living this life.

Chemo round two (aka 21) on Monday to help me keep living it!




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