Brain Tumor · Writing & Freelance

My Favorite Phone Call

Yesterday the long-term disability insurance representative called me with her regularly scheduled, “Are you still disabled? Why can’t you work again?” call. Why is it that when I reply, “Because I still have a disabling, cancerous tumor on my brain stem” I feel like I’m the ass?

Do you know what I mean? Do you ever feel this way? People ask you a painfully obvious question and you feel like there’s no way to answer it without coming off as a smarmy, sarcastic jerk? Even though all you’re doing is answering honestly.

Maybe I’m overly sensitive, but there’s something exhausting about having to defend your disability constantly because some super-low percentage of disability claims are made fraudulently. By defult, everyone who’s disabled is suspect, particularly if they’re claiming the disability is permanent.

Because everyone who’s sick always get better, am I right?

I’m thinking, “LOOK. IT’S A TUMOR. THEY CAN’T TAKE IT OUT.  I WILL HAVE IT FOR THE REST OF MY LIFE.” But I don’t say that, because I know it’s just her job.

When May 2019 comes, and the two-year policy term has ended, I won’t have to defend myself as frequently. Granted I also won’t have the policy’s $900 a month either.

And this talk of money reminds me that Dan and I are somehow still hanging on over here. A former coworker found an old GoFundMe page and sent me a little something, and mentioned that he wanted to help with “writing and other expenses.”

First of all, I know some of the nicest people in the world. It truly is a marvel.

Second, I’m going to use the donation to print the memoir draft and work on refining it. Then… I don’t know. Traditionally publishing the thing feels impossible to me at present. But maybe I could get it in shape to self-publish. I could offer it as a reward for my Patreon patrons. Or publish it serially on my blog. Or, I don’t know.

I get overwhelmed and then I just shut down that part of my brain. But I’ll figure it out. A friend (and not just any friend–a writer friend) offered to be a beta reader for it. Maybe that’s what I should do next?

Brain Tumor

Emily’s Cancer Calendar: November

Cancer calendar November.jpg

I cannot believe it’s December already.

November was pretty calm. I gave up on the FitDesk entirely in favor of focusing my energy on keeping the kitchen clean and doing more routine chores around the house. Having a brain tumor doesn’t really allow me to add activities to my day. If I do something new, something old has to go. So I traded pedaling on the stationary bike for having a tidier house. It might sound worse, but seeing the living room carpet full of vacuum cleaner lines actually soothes me some. And I figure the physical activity I get from cleaning is as good–if not better–than biking.

Anyway, this whole trade-off one activity for another deal is why I tend to roll through hobbies and activities rather quickly. From the outside it might look like I can’t commit to a thing, but that’s simply not the case. I just can’t do everything I want to, and so I have to take turns to feel like I’m living a whole life.

Aside from keeping a cleaner house, my energies this past month have been focused on my YouTube channel, dooding and Zentangling, and playing Falllout 76.

A lot of playing Fallout 76.

Earlier in the month I had my MRI and checkup, which I previously reported was stable, so there isn’t much to report as far as my health is concerned. My abilities and disabilities remain mostly the same, and I just keep on keeping on as best as I can figure out how.


Brain Tumor

A Couple of Things I Dread

I’m blogging on my phone from bed again because I’m feeling kind of low today. I’m not apologizing for it, but I am offering something of a warning. In case any of you are feeling less than content too and need to postpone reading more not-happy stuff.

First, I feel mostly sad and anxious today. As is usual with these kinds of things, I can’t clearly articulate why. Maybe the margarita I had last night to celebrate our five year anniversary has depressed me? One drink has never made me feel this way before, but I am still in the habit of internalizing the thousands upon thousands of messages I’ve received since I became chronically ill–messages that tell me everything bad that happens is the result of some choice I made. I had bread instead of Brussels sprouts last week. No wonder I hurt everywhere. I colored a drawing instead of riding the FitDesk for 30 minutes. Of course I can’t move my joints. I drank a margarita instead of water with dinner. Of course the whole world is closing in on me.

Or maybe I’m just having a harder time than usual pushing the stressful stuff out of my mind because sometimes that happens to people.

I do know I’m worried about the book. It’s the same kind of mental yuck I’d get as a kid the night before I had to give an oral presentation at school. Only the big difference is I’m not being made to write this memoir. I’ve chosen to do it.

It just feels so huge an undertaking, and I’m not sure I’ve got what it takes. (Not, like, do I have the talent, but am I able?) ‘Cause if I don’t pull it off, there will be even bigger financial worries in my future. And, hello, Universe? I don’t know if you noticed, but I already have a brain tumor. I don’t really need any more personal struggles. I’m good. I have built soooo much character in my 38 years.

But I feel the self-imposed burden to finish what I started, when it would be so much healthier for me if I could say to myself, “It doesn’t matter if you finish this,” and then really mean it.

Also? I have an earache, which has more to do with me being in bed than run-of-the-mill depression. I could pout for days. And winter hasn’t even started.

Brain Tumor

Tips for Getting Your First Brain MRI

This content is available in video form on my YouTube channel. Check it out!

YouTube Intro Card MRI tips

I consider myself something of a professional when it comes to having MRIs. In fact, my brain tumor has been scanned so many times, I have genuinely lost count of the number of MRIs I’ve undergone since 2017. If you’re nervous about having one because you’re not sure what to expect, that’s understandable. But I think I can help put at least some of you out there at ease, so I’m going to try. The advice I’m about to give is particularly helpful for those of you going in head-first for brain and spine scans.

If you’re claustrophobic? Ask for an anti-anxiety pill.

If you think you’re not claustrophobic? Still ask for an anti anxiety pill.

I didn’t think I was claustrophobic when my doctor screened me before my first scan, but it turns out that I had just never been in such tight quarters before. When the MRI tech slid me in, I freaked out a little. He moved the table back out and let me compose myself. But in hindsight, the whole thing would have probably been much easier with a Xanax.

I don’t need Xanax now, but that’s because MRIs are as common as sneezing for me now. (If you’re lucky, YOU TOO can become desensitized to having MRIs. Kidding. Of course.)

Close your eyes.

…before the table you’re lying on starts moving you inside the tube, and don’t open them again until you’re all the way out. It’s easier to not freak out if you’re not looking at the thing that freaks you out.

Ask for a Washcloth.

If the tech doesn’t bring it up herself, ask her to put a washcloth over your eyes. My scans last from 45 minutes to an hour depending, and that’s a long time to squint your eyes closed, particulalry if you’re stressed. With the washcloth over your eyes it won’t matter if your eyelids involuntarily pop open. And the previous tip I is automatically taken care of.

Be prepared for some really loud honking and buzzing noises.

You will be given earplugs and/or noise cancelling headphones, but they only protect your ears. They don’t completely eliminate the noise. When I get my MRIs, they offer to play music in the headphones if I want. I always say yes, and I always pick something with a nice beat like ’80s pop or classic rock.

Consider learning to meditate.

If you already meditate/practice mindfulness, you are at a GREAT advantage for staying mellow during the scan. If you don’t meditate, maybe give it a try. I have found it so helpful because meditation is essentially just training your brain to focus on things that are helpful while ignoring the stuff that’s potentially stressful.

Contrast will make you feel like you wet your pants, even though you haven’t.

If you’re getting an MRI with contrast: expect some weird but harmless sensations. The IV contrast feels cold in my arm when it goes in, and then I get a warm sensation that makes me feel like I’ve wet my pants a few seconds later. It goes away pretty quickly. But I can see how those things might be a little disconcerting if you’re not anticipating it.

Relax! You get a panic button.

Yes, they’ll give you a panic button! They put a little rubber ball in your hand that you can squeeze if you need to get out for any reason. If you can’t handle it in there, squeeze the ball, the tech will be alerted, and then the tech will always slide you on out. You are never actually trapped in there. Don’t let the freak-out part of your brain tell you otherwise.

Warm blankets are available. You might or might now want them.

You’ll probably be offered warm blankets. I never take them, because I’m almost always hot, and I find that feeling cool air swirl around inside the MRI and inhaling it deeply is pretty calming. However, if you’re always cold and think you might be shiver-y, take the blankets. Moving during the scan can blur the pictures and make it necessary to start that one over. Nobody wants that.

BONUS TIP: If you haven’t already, check your hospital’s website for information on what to expect and any special instructions. The more you know, the less there is to potentially be scared about.