Go Gray in May for Brain Tumor Awareness Month

Go Gray in May for Brain Tumor Awareness Month

This year for Brain Tumor Awareness Month, I’m seven years post-diagnosis. It feels like a big deal.

Free brain image in Zentangle style, black and white digital with test "go gray in May" and attribution to emilysuess.com

My Brain Tumor Diagnosis

In February 2017, I was diagnosed with a rare, relatively slow-growing brain tumor. The kind of brain cancer that is overshadowed in the news by stories of politicians with GBM, for example

I believe those stories are important and impactful, but so is mine. So are the stories of all the people whose lives are altered by treatment, bills, and disability and whose names aren’t immediately recognizable.

Every Brain Tumor is Different

Brain tumors can be benign or malignant. They can be in different areas of the brain that affect different processes in the body. For example, seizures are a common symptom of brain tumors, yet I’ve never had one. I am most effected by muscle issues, balance problems, and pain. But there are any number of complications that a patient might report.

Support for Brain Tumor Survivors

Empathy is what I want most. But it’s a very elusive thing, trying to explain to people with actual words what I’m experiencing. I always feel like a failure in the end. There are no words.

But there are specific things people have done for me when my words fail.

The Thing about Early Detection

When it comes to cancer, you hear a lot of well-intentioned people talk about early detection, but that’s an oversimplification for sure. Since pain was and is my key complaint, I didn’t get an MRI when I first sensed something was wrong. what I got was a misdiagnosis and a couple years of Bonus Struggle.

Lacking a dramatic symptom, you might have to push for answers too. I want people who haven’t yet had this fight to try to imagine what it’s like. I want people who are going through it to know I care.

Patient stories matter, and I encourage you to talk about Brain Tumor Awareness Month 2024 with me. If you need free graphics, I shared some here.

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Next Things

Next Things

So I think I’m finally in a decent mental space to talk about my medical future. The thought of Brenda* doesnt get me miffed anymore, and lots of people are asking me “what’s next?”

As I mentioned earlier, I’m done with treatments. But did they work? And will there be more?

I’d say they worked, but it all depends on what your goal was. My goal was to be any kind of better than I used to be. And I can put my underwear on by myself again now, so … HUGE plus.

I knew from day 2 or 3 after diagnosis that removing the tumor was not an option. But in October my MRI revealed that the tumor had shrunk. That was a pleasant surprise, celebrated with dinner at Applebee’s.

Because my tumor is on the brain stem, the doctors said it was too dangerous to cut out. That left radiation and chemo therapy only. I’ve done one five-and-a-half week round of radiation with Temodar. And then six additional rounds of Gleostine.

Will there be more of either in my future? No idea. Can there be more in my future? I don’t honestly know. I’ve heard different things at various times about how a recurrence of cancer growth might be handled down the road and there are too many variables for me to know what’s likely to happen.

I haven’t asked my doctors any what-if questions either. It’s just not my style. I never asked them the life expectancy question. I never asked them what symptoms they assume I will have forever. Or what I might recover from. Basically because I know that all they can do is guess. And my long, tiresome medical journey to this point has taught me one thing:

I ain’t getting my panties all up in a wad over anyone’s best guess.

If I wake up tomorrow with normal nerve sensation in my left side, sweet! If I am suddenly cured of vertigo and nystagmus, w00t! If I don’t, oh well. I’ve already seen tons of effed-up days. What’s one more?

I’m not well enough to work right now, due to continued fatigue, brain fog, dizziness, and a handful of other symptoms. Do I want to work? Let me put it this way: I want to be well enough to work. I do not want to work until then. I slogged through several years of pain and misery with this tumor, and the thought of being forced back to work before I am ready sends my anxiety into uncharted territory.

So for now, I’m working on self-managed PT. Riding the FitDesk daily. Doing strength exercises. Contemplating whether we can physically manage and financially afford getting me to some PT/OT soon-ish.

The best part about where I am right now is that I’m not staring down a next dose of chemo. That alone does wonders for my body and my mental health.

Scanxiety is a Thing

scanxiety.pngI’ve had a difficult time getting to sleep the past couple of nights. I can’t really put my finger on just why; it’s just a general sense of anxiety.

There are unidentified beings throwing a dance party in the pit of my stomach. They’re drunk, puking Zima, and butt-dialing my brain saying things like, “Have you tried worrying about this yet?”

Right now I’m leaning toward the source of my uneasiness being scanxiety about next week’s appointments in St. Louis.

I will have my first post-treatment MRI then. Though I’ve been warned the scan results are to determine a “new baseline” and are not for comparison, I really, really want to know that the tumor is already smaller.

I know I’m in for more rounds of chemo, regardless of the story the new MRIs tell, but if the doctors think that more radiation is called for, I might lose it. I already rang the bell. That means I’m done.

Done, done.

Right?

You can’t ring the bell, take home your radiation mask, and then have to do it again. That’s just not right.

Fibromyalgia Misdiagnosis: Surprise, It’s a Brain Tumor

Fibromyalgia Misdiagnosis: Surprise, It’s a Brain Tumor

Whew! The past 72 hours have been utter shit for me. I’d explain why, but I’m going to tap my Tumor! sign and leave it at that. There’s something else I want to write about now: my chronic illness and my fibromyalgia misdiagnosis.

Did you know that May is Brain Tumor Awareness Month and Fibromyalgia Awareness Month? (Actually, May is the awareness month for a lot of chronic illnesses, but these two things in particular have been just about my entire life since October 2014, so they are getting top billing on my blog on this lovely May Day.)

Fibromyalgia: Misdiagnosis?

I mentioned in a previous blog post that I believe fibromyalgia was a misdiagnosis for me as opposed to a comorbidity. As I have discussed many times with family and friends, I am mostly overjoyed to have an accurate diagnosis and a real plan to get better.

However.

There’s a special kind of emotional baggage I picked up on this chronic pain path, and the only way I know to heal from it is to put it out in the universe by sharing it on my blog—where my family, friends, and even complete strangers get to read some of my most intimate thoughts.

Article: Ultimate Guide to Helping a Loved One with Brain Cancer

I have no qualms about oversharing when it comes to my well-being, in case that wasn’t already abundantly clear.

So here’s the deal. On February 2, 2017 I had fibromyalgia. Then on February 3, 2017 I officially had a six-centimeter tumor on my brain stem.

On February 2 the general consensus among my numerous doctors was that I wasn’t eating right or exercising enough. If I were, I’d experience improvement and maybe even remission of some of my symptoms.

On February 3 the general consensus among my doctors was “Holy, shit. You shouldn’t be able to do that” or “No wonder your body can’t walk, breathe, sleep, digest, or stabilize your heart rate and blood pressure like a person without a brain tumor.”

At first I was like, damn I am one tough cookie.

And then I was like, wait just a goddamn minute here.

Misdiagnosis Bottom Line: I felt the same!

I want to point out that from a purely physical experience, there was no discernible difference for me between February 2 to February 3*—even though in that 24 hours, my list of symptoms was suddenly more than validated. I wasn’t just making stuff up or being stubborn about diet and exercise, and it the fibromyalgia misdiagnosis was total crap.

Medical professionals (not speaking of specific doctors right now, just medical pros as a whole-ass community) who were previously dismissive of my chronic pain symptoms were suddenly losing their shit over how believable my reports of chronic pain and disability were.

And this is a point that I really want to drive home, so I’m going to repeat it:

The physical experience of living inside this tired, broken body didn’t change one iota for me in that time. All that changed was who believed me.

And somehow I went from being a whining, complaining exaggerator with two X-chromosomes to a human being who really had been experiencing unrelenting level-eight pain for TWO AND A HALF YEARS.

(I am so angry thinking about it! I might get over it one day, but not this day!)

charlie_brown_pain_scale

(My Spoonie friends are grabbing the box of tissues right now. They are empathizing so hard.)

(Others might not quite understand just how much emotional damage was done. That’s okay.)

It makes me angry that I wasn’t taken seriously. It makes me sad that treatment (and possibly relief) could have come just a little bit sooner for me, but instead I spent months homebound.

The lazy-ass rheumatologist that was a little too eager to diagnose me with fibromyalgia in 2014 fought me over my symptoms and complaints of weight gain, insisting that I wasn’t exercising enough.

When I told him that I’d been tracking my steps, walking to and from work, walking three laps at the park after work every night, and using my FitDesk and hand weights at home and was experiencing physical decline instead of improvement, his response was “Well, you need to start out slower and build up.”

SERIOUSLY?

That’s all the motherfucker had. I must have been doing it wrong. Could be that fibromyalgia was a misdiagnosis.

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Now that I have proof of this brain tumor (grade 2 Astrocytoma, can’t remember if I mentioned that) and I am recovering from surgery, chemotherapy, and radiation therapy, I hear admonishments not to “overdo” when I tell the doctors and nurses that I’m walking without mobility aids or putting in 30 minutes (on the lowest resistance setting, for the love of god) on my FitDesk as I try to recover.

If you don’t immediately know why both of these experiences fill me with boiling rage, I’ll tell you: NEITHER VALIDATES THAT I KNOW THE PHYSICAL LIMITS OF MY OWN DAMN BODY.

And yeah, the anger that comes with that weasels its way into my waking hours from time to time. You got a problem with that?


*I implore you to think about this before you accuse someone with a fibromylagia (misdiagnosis or diagnosis) of being an attention-seeker, a pill popper, or a conjurer of fake maladies. It hurts us all, and keeps the counterproductive stigma alive.

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