How We Got Here

(How to survive a brain tumor, and the rest of your life)

Welcome—and especially to those who are here as new paying subscribers (I am so grateful). As some of you know, I have been coping with serious medical news. I’m not going to turn this space into a journal of illness, but when my experience touches the themes of this newsletter—or I am getting a lot of questions on something specific—I will share. This is one of those posts.

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It started about a year ago, on one of those first sunny days of spring. It was hot outside and I had been working in the garden. When I came into the house to splash cool water on my face, I felt an odd tingle around my right eye.

Huh, that’s different.

It wasn’t strong, it didn’t hurt, just a slight tingle. But I knew it hadn’t been there before.

In time I would come to call it my “twinkle.” This is funny if you know that my first name—Tara—is the Sanskrit word for star.

Soon I was noticing the twinkle more regularly: when there was a sudden change in the temperature, or when I ate something. What was it?

I ruled out all the reasonable explanations:
Had I changed my skincare products? (no).
Had I developed an allergic reaction to the face masks I wear? (no).
Was I reacting to some new chemical or food additive?
Maybe—but when I noticed the twinkle come on after eating pears and celery, it seemed unlikely.

It was time to get doctors involved. And here is our first takeaway.

I’ve not always been one to run off to the doctors. I tend to procrastinate on medical things. Maybe it will pass? Maybe I just need to drink more water? Maybe I should see a naturopath or a chiropractor or get some more sleep?

I definitely need more sleep. Let’s do that first.

But fifteen years ago I lost a friend. She was a busy type, always taking care of others.

In the grief of her passing, I made a promise. I would make my own care a priority. I would get any odd symptom or sensation checked out. And since then I have.

When the twinkle popped up, I had a dermatology appointment already scheduled—an annual visit to have my many spots and freckles checked. Surely a skin doctor would be the right person to tell about a face tingle.

Here is where fate interfered, in the shape of a small, dark tick.

I found the tick after I had spent the afternoon on a farm harvesting rhubarb with friends from the food pantry where I volunteer. We had been told we could cut all we wanted for the pantry, it was exciting.

The next morning I found a fully engorged tick to the side of my belly button. My dermatology appointment turned into a tick removal session and I forgot entirely to mention my tingle.

Surely it wasn’t that important. Maybe I could wait until my dermatology annual next year?

But no, I had promised the memory of my friend that I would do better. So I did.

What followed was a mini marathon of doctors. The eye doctor (the tingle was around my eye, after all) said it wasn’t anything ocular. My main doctor, who is wonderful, had been promoted to training other doctors, so I was assigned a new first year physician.

I went through two residents (the first never got back to my message; the second ran labs, then told me she was leaving at the end of the month). Finally, I begged for an appointment with my old primary care physician.

“I need to know this isn’t going to turn into something serious,” I told the receptionist, I was getting agitated by this point. “I don’t want to not check it out—then find in four or five years that I really should have.”

The receptionist took pity on me and made the appointment. I was grateful.

My doctor said it sounded like a nerve compression condition called Trigeminal Neuralgia, only that is usually accompanied by extreme pain and I had none. As Trigeminal Neuralgia can be an indicator of Multiple Sclerosis, She suggested an MRI. Or we could continue to observe and run the MRI later.

“No,” I said firmly, “Let’s do it now.”

And it’s a good thing we did. Because when the results came back we discovered I had a brain tumor—so large it had probably been growing for ten or twenty years. It was pressing on my brain stem and had grown into my right auditory canal. All the doctors were surprised at the results—and that I didn’t have any other symptoms.

My doctor thanked me for pushing so hard, for advocating for myself. “We never would have found it in time,” she said.

What followed were so many medical appointments and tests, which eventually culminated in two days of surgery in March (two craniotomies: the tumor was so large they needed to approach it from different directions).

Then there was nearly three weeks in the hospital, and now months of recovery and physical and speech therapy, with radiation likely to come for the remaining parts of the tumor. I’ve had to relearn how to eat solid food and sip from a cup (there was also two months of mostly blended soup, because my body had lost the ability to swallow properly). To quote a family member: It’s been A LOT.

Here, I think, are the takeaways:

Any strange feeling or symptom you experience is worth checking out. I can’t tell you how many times I considered just being okay with a facial tingle—after all, it wasn’t painful. But paying attention to that small, almost silly symptom may have saved my life, or greatly extended it. Our days are busy, we don’t all have the resources we need, but our health deserves our attention.

It’s worth advocating for yourself—and you may have to. The US medical system does not make it easy, I had to go through four doctors before the right test was ordered. As I mentioned, my doctor thanked me for advocating, for not giving up, for not taking no for an answer. It would have been a very different outcome if I had.

I like to be pleasant, I want to be liked, so sometimes it’s hard for me to push, but some things are worth pushing for; your health is worth it. (And women’s health concerns are not always taken seriously, women of color even more so).

Here we need to acknowledge the inequities in this system: health care is expensive, not everyone in the US has insurance. It is a gross reflection of our cultural values that we do not offer universal health coverage. I hope we can push for better.

Everyone deserves to be cared for in times of challenges. (My state of Washington is working on it and if you are in WA you can get involved). I’ve seen stats that show 648,000 people declare bankruptcy in the US each year due to medical bills—while insurance companies grow rich. We can and must do better.

Finally, in order to do my part for brain tumor awareness, here are the symptoms for meningioma, which is the sort of (usually benign) tumor I have—though there are cases, like mine, with few to no outward symptoms. Please, take care of yourself and your people.

From Cancer Therapy Advisors: Depending on the size and location of the tumor, symptoms of a benign meningioma might include the following.

• Headaches;
• Seizures;
• Memory loss;
• Personality changes;
• Loss of smell;
• Difficulty hearing;
• Changes in vision;
• Weakness in the arms or legs;
• Difficulty speaking.

Thank you for reading, and if you want to learn more I appreciated this article by Irish filmmaker David Freyne: Me, My Film, and My Massive Brain Tumor. I took comfort in the fact that Freyne was able to write and create after his surgery (my great fear was that I might not be able to), and it was helpful to read a first person—and slightly funny—account.

Thank you for your subscription here, particularly the paid subscriptions, which help me pay the health insurance currently saving my life. This space won’t change—I’m still focused on building a better world, one with care for everyone.

I have another newsletter. It’s about fostering joy, self care, pleasure, and delight—because when grappling with hard stuff, we need to balance it with FUN. This is about walking a middle path: work and play, dark and light. Thanks for reading along.