Man, I feel terrible.

I’ve been alternating between Zofran and Compazine the past 24 hours or so. I wrapped chemo Thursday night, but just like last cycle, the worst days feel like the days following the end of the five day chemo routine. Days one and two aren’t bad at all, by day three I’m feeling the typical nausea and fatigue, then days four through the next several, it’s pretty tough. Heartburn and a hangover, I called this not too long ago.

Yesterday I thought I was okay. I had swallowed the poison of my last dose for this round the night before. I was feeling strong mentally that I finished another cycle; almost celebratory. Plus, we pushed from four to eight weeks before the next MRI, so things are really feeling good that all I have to do medically for the next few weeks is regular blood work before the next chemo round starts later this month. There’s still more chemo looming less than four weeks away, but to not have to go in the MRI tube until June is a nice respite from that chore.

I was feeling meh yesterday, and by night, I was circling the drain. I needed to lie down after dinner, and Whitney knew that I must really not feel well because I almost never rest, and it’s unlike me to actually get in bed anytime before 10:00. I took melatonin and crashed out, probably asleep by 8:00 or 9:00 and slept until 6:45 this morning, when I got up to vomit. It’s been ginger ale and meds all day.

No one wants to read someone kvetching about feeling ill. I’m not sure that a straight up, I feel like shit, sort of post is all that engaging. I really am out here to write for all of us, from my perspective, and not write for only me. This is a newsletter I’m publishing and not a journal that I’m keeping at my bedside, which is all to say that I make editorial decisions about what I think you all will want to read, and me reporting symptoms and complaining doesn’t often top the bestsellers list.

I don’t go to those negative headspace places often, unless I can use that energy toward a productive outcome that informs, enlightens, or calls to action. Let’s turn this pity party around.

I ate a bagel before I started writing this.

Well, better, I had the idea to write this while I was eating a bagel. I needed a bagel. I don’t know how food cravings work, but I knew that only one thing could solve my nearly 24 hours of nausea and it was a bagel.

Sadly, all we had on hand was a Thomas bagel from the grocery store.

I need a decent bagel. This is why I’ll make my way to Sidedoor this week and walk out with a dozen.

Here’s the deal, for real. Patients are exposed to a mind numbing volume of unsolicited advice. Eat this, not that. Use this supplement. Avoid those seed oils in your cooking. Get this amount of physical activity. Use this app. Did you read this book? Get your information from this website. “Did you hear about this breakthrough?!” Then that same article gets forwarded to you a thousand times.

I’ve never been quite this crass, but sometimes I want to scream, “Shut up!”

One of the pernicious refrains of cancer culture is the extension of fitness bro and wellness culture itself, and it’s a lot of mostly unfounded myths to eat keto, eat organic, don’t eat GMOs, yada yada. Y’all. Shut up. When talking about chemo fatigue with a friend recently they told me, “Why don’t you try to exercise more?”

“Why don’t you try to take chemotherapy more?”

The light bulb illuminated for me a few weeks ago when I was trying to recall the super strict regimen I had put myself on the first go round. Caloric restriction, super low carb, regimented sleep hygiene, and so on. The truth is. I can’t do that again. Or at least I choose not to. I’m eight years out from my first diagnosis. I’m 42 years old. Our kids are in middle and elementary school. We’re missing, arguably, the biggest annual event for the brain tumor community this upcoming week because of my active treatment. Then and now are not equivalent. This is not the “first go round.”

All of the earworms from the unsolicited advice begin to tell the same story, and that story is less and less that people want to help. Instead, the onslaught of advice and the internet influencers are pushing a false frame of longevity, anti aging, body composition, and, yes, cancer care. So if that’s the premise, then rejecting that advice is rejecting longevity and so on. And what asshole with a family, friends, community, etc. would reject their own survival?! See how that advice begins to work on you, at a deeper level?

My Thomas bagel is a dense bread with refined carbs, and I’m sure it’s wrecked my macros.

You know what? Shut up!

The secret to living as well as we can, for as long as we can, is knowing when to shut off the influencer culture and listen to your gut. That’s how I write. That’s increasingly how I’m trying to live. If you’re under the weight of a new diagnosis and other people’s advice, take it from this long-termer, don’t let your happiness run out before your life does.

This blog post was published by Glioblastology on May 4, 2024. It is republished with permission.