Navigating the world with a brain tumor

Not the life curveball I was expecting.

Image created via Midjourney

It's been two weeks since I learned that I have a brain tumor.

It started with pressure at the back of my head. Dr. Google suggested that I drink more water. It never really went away, so I saw my primary care provider. A head CT was ordered. My PCP called me with the results and told me to go to the ER, because there was a mass.

Six agonizing hours later, I had the results: meningioma, a slow-growing, benign tumor. I've probably had it for 10+ years. It had finally grown big enough that it caused the head pressure.

There was a neurosurgery consult, and then another neurosurgery consult, and now I have brain surgery scheduled for July.

The past week has been a flurry of text messages, DMs, public announcements, and emailing clients. I told my two older kids, assuring them that I will be fine.

To a large extent, that's true. I'm not going to die. I don't have cancer. I'll have surgery, and maybe a round of radiation and that will (hopefully) be the end of Betty the Brain Tumor (the kids and I gave her a name). I also have about six weeks before surgery, so I have time to plan.

But it's still so, so hard.

I still have to work

My brain feels like it's broken, and I can't even blame Betty (the tumor is not impacting the "thinking" part of my brain). I find myself frozen, unable to do anything. Or I have a million thoughts flying through my head, and I'm not sure what to work on first.

I've always prided myself on being a reliable freelancer, but some things did not get done on time. Last Friday, I got a call from the neurosurgery department with a request that I see an ophthalmologist and audiologist before my consult the following Monday. I had to immediately drop everything and rush into Chicago (a 60-minute drive, at best). I arrived one minute before my scheduled ophthalmology appointment.

I had to email my clients and say, "I'm so sorry; an emergency came up" — not yet ready to say, "I have a brain tumor" until I had more concrete information about treatment.

Now I have that information. I have a few weeks to wind down my client work. I'm lucky that I have an incredible network of friends who are willing to help keep my business moving — some of whom I've never met in real life. But as soon as I publicly shared that I have a brain tumor, they said, "How can I help?"

But that means I'm doing a lot right now. I still have a normal volume of client work, and I'm trying to prepare for an unknown recovery period. The neurosurgeon told me a minimum of six weeks, but it could be longer, depending on how the surgery goes. I can't completely hit "pause" in my business, because some things will keep moving, whether I'm there or not.

I've always tightly controlled the creative aspects of my business, like writing this Substack, and my blog, and my newsletter. I have to give up some of that control, and let other people help. It would be very hard for me to pre-write enough content for such a lengthy recovery. Pausing everything would be a huge setback.

So I've been trying to plan, make lists, and record videos for people, showing them what to do. On top of doing regular client work and being completely distracted by the idea that my brain is currently home to a tumor.

I still have to navigate the world

I don't know what the outcome of brain surgery will be. It's a giant question mark.

The neurosurgeon told me all of the risks. My hearing might be damaged. I might not be able to move my cheek the same way (impacting my smile). Or maybe the movement in my arm will be affected. Or none of the above. There's no way to know.

I've found myself watching other people moving about their days, thinking, "Well, they don't have a brain tumor." And I know that many people deal with invisible illnesses and struggles. But I still find myself resentful of people who aren't dealing with something like this.

The other day, I was listening to one of my favorite podcasts. The two hosts were laughing and joking, and I was angry. There are so many things I've wanted to work on in my business (which is tightly connected to my creative work), and this is a giant setback. Not to say that they'll never get done, but now they'll all be on the back burner while I focus on recovery from brain surgery.

In addition to invading the space in my head, the tumor invades my thoughts. It still feels very weird to say, "I have a brain tumor." It doesn't feel like me because — other than this slight pressure at the back of my head — I have no symptoms. But I've been carrying around this tumor for years without knowing it.

A friend sent me a link to a t-shirt that says, "I HAVE A BRAIN TUMOR — WHAT'S YOUR EXCUSE?" I had to laugh.

But I'd prefer to wait and buy this version of the t-shirt: "I HAD A BRAIN TUMOR — WHAT'S YOUR EXCUSE?"

Create boundaries for yourself

---

I’ll be writing more about my Brain Tumor Journey in my personal blog. If you’d like to support my recovery, I have a GoFundMe or you can buy me a coffee.

You can also subscribe to support this publication as I continue to write during my Brain Tumor Recovery.