Brain Tumor

Tips for Getting Your First Brain MRI

Emily SuessLeave a comment

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.

Brain Tumor

Emily’s Cancer Calendar: October

Emily SuessLeave a comment

cancer calendar.jpg

Another month in the books. My FitDesk numbers were waaaaay down in October, but that’s okay. It’s because I’m trying new things, including keeping up with household chores more frequently, making videos for my YouTube channel, and volunteering to Get Out the Vote on November 6.

By the way, if you haven’t yet, please check out my channel and subscribe. I’m working really hard to get 100 subscribers so I can claim a vanity URL.  (Something easy to remember like youtube.com/emilysuess instead of the current https://www.youtube.com/channel/UCkpRtMiYXyG8YZjrtgjfKSQ.

Anyway, here’s one of my recent videos on how you can make your own handwriting font for free:

 

I also draw, doodle, and color on-camera. It’s relaxing for me, and hopefully for everyone who watches. I’m working on some additional content ideas for the channel that include my vlogging a little bit about life with a brain tumor. Subscribe if you want to be notified when I post new videos.

Let’s see…what else? For the past couple of weeks I’ve been trying out what I like to call Kitchen Zero. Think of it kind of like Inbox Zero. Only instead of no emails to read or reply to, at least once a day (usually after dinner or just before bed)  there are no dirty dishes in the kitchen. I realize that for some people this is a natural occurrence. In our house, it is not. It has to be forced. And I’ve been feeling well enough to keep it up almost every night.

Also, you’ll see there on the 19th that I got my very first professional haircut since I underwent The Great Buzzcut in early 2017. Honestly, my hair still isn’t that long (I buzzed it last in early June) so my look isn’t much different. But it felt amazing to me to finally have that shaggy junk stop tickling my ears and the back of my neck.

Unfortunately, after spending about 40 minutes in the hairdresser’s chair, I ended up hurting from head to toe. Those of you who have fibro or other chronic pain will understand what I mean when I say being touched for an hour sent me into a couple of flair days. My nerves just cannot handle being activated.

I don’t think that will ever change for me. Kind of a downer to think about it that way, but I can deal. I am dealing. I just try to give myself rest time throughout the day and puff my MMJ vape until the sharp edges get a little rounder.

That’s it for October. November includes my next regularly scheduled check-up MRI. So I’ll keep you posted.

Memories

My Safe Place

Emily Suess3 Comments

I’ve got a sore, lumpy knot of grief stuck in the back of my throat. I feel it lodged there in my neck every time I try to swallow. It showed up when I first heard the news that there was an active shooter situation in Pittsburgh. In a synagogue.

I am not Jewish, not by birth or faith, but I feel Jewish sometimes. Like Judaism and its people adopted me. For almost three years, I worked in a synagogue in Indianapolis.  I was an administrative assistant, helping the religious school director, the early childhood center director, and the cantor. This was during a pretty rough time in my life (second only to my cancer diagnosis and treatment in terms of the wreck it made of my body and mind).

I was divorcing my first husband, a dedicated manipulator and compulsive liar who, as it turned out, refused to leave my home for months—even after our divorce had been finalized by the courts. And then when my ex did leave, he used his position at his job to target me for online harassment. The situation was abusive, though not physically so.

My ex is not the point though. I only bring him up so you can get an inkling of my state during the time I was working for Congregation Beth-El Zedeck. The important thing is not what I went through, it’s how I got through it: by going to work every day in a place filled with people dedicated to making the world better for other people. How many of us can say we got paid to go to our safe space?

I was so lucky to have had that job.

I’ll never forget my orientation when I was hired. No cheesy sexual harassment videos from the ’90s to watch. Just one of my bosses giving me his estimation of things. “You’ll find there are some strong personalities here,” he said. “And we’re not completely immune to office drama and interpersonal conflict, but I wake up every day knowing that anyone here would take a bullet for me and I’d do the same for them.”

That memory is playing so vividly in my mind today.

When I read the names of the victims at Congregation Tree of Life this morning, the words “take a bullet” started playing in a loop. And I couldn’t stop myself from imagining what if. What if yesterday’s murderer hadn’t been in Pittsburgh.

I know antisemitism isn’t new. But the stories have been more frequent and hitting closer to home lately. A University of Illinois student vandalized the menorah outside the Illini Chabad Center for Jewish Life in Champaign. Nazi flags and Iron Crosses were spray-painted on brick walls at Congregation Shaarey Tefilla in Carmel, Indiana.

In a statement from Beth-El, I read that they are working with law enforcement to reinforce security for the synagogue and religious school. And that’s when my heart broke a second time. Because the people that make up the safest place I can think of—safer than my own home, or the church I grew up in—are being robbed of that same sense of security they gave me, the security everyone deserves.

Brain Tumor

Dan Gets a Copy of the Manuscript

Emily Suess2 Comments

I packed up the memoir in a neat little Scrivener file and emailed it to Dan. It was much harder to do than I thought it would be. I know that in its current state it’s awful. It’s a first draft. I keep telling myself that. It’s a first draft. But I also know that without Dan to help me make sense of the chaos, I won’t get beyond first draft. I am well and truly stuck, incapable of even opening the file right now. (The last time I tried to take a look at it, I only got a few sentences into the first scene and cringed so hard I was practically paralyzed.)

So, yeah. Being 100 percent honest about the whole situation, I’m a little nervous Dan’s going to look over the existing manuscript and be like, “Em, this is not salvageable.” Even though my rational mind knows he wouldn’t say that even if he really did think it.

It’s weird, because I thought I was over getting apprehensive about my writing years ago. But this is different somehow. I mean, it’s not any more personal than a lot of my blog posts, and I seem to have no trouble hitting publish on these puppies! But it’s big, and it’s important, and I actually kind of need this thing to work because I’m relying on the income.

That’s a lot of pressure to put on a first attempt at a book, and I know it’s not really fair to the project or to me. But, well, here we are anyway.

I’m not sure when Dan will have a chance to look at the file. I kind of sent it at a time when I knew he’d be busy with getting-us-ready-for-winter projects. I’ll post an update after he’s had a chance to look at it though.

 

Brain Tumor · Writing & Freelance

The Memoir is on Pause

Emily SuessLeave a comment

header postcards

I hit the the 50,000 word threshold on the memoir last week, and then I put the manuscript away. It’s very nearly ready to hand off to Dan for structuring feedback. However, there are a few reasons I’m waiting:

  • My postcard writing for the Midterm Election has been moved to the front burner. (I’ve written nearly 240 to date with address to write at least 100 more.)
  • I’m not “feeling it” at the moment, and pushing forward before I’m ready will only result in wasted effort. (Ask me how I know.)
  • I want to print the manuscript, because I need a tangible thing to craft at this stage. But my printer’s out of ink, and it’ll cost about $25 to print the current MS at Staples or Kinko’s. So, next paycheck.

While the memoir is on hold, I’m working at making videos for my YouTube channel.

Sometimes I can’t tell if things are genuinely hard (and would be for anyone) or if my brain is slower because of the cancer and treatment. For example, it took me three long, crank-filled days to figure out why my phone kept forcing videos to record in portrait mode instead of landscape.

Anyway, if you’re interested in looking at the progression of my work, watch my videos on coloring and Zentangling. They’re going to get better, I promise!

Activism · Birds · House and Home · Medical Cannabis · Writing & Freelance

Let Me Introduce You to My Workspace

Emily SuessLeave a comment

12 Things.jpg

This is a picture of the end table next to me right now. It’s a little chaotic, I’ll admit. It’s maybe not how I’d keep things if I were perfectly healthy. But maybe it is. I don’t really know. I’m not the most organized person in the world. Anyway, this is the current state of things.

  1. Mountain Dew goes really well with weed. (See #6.)
  2. My phone case/wallet. It’s a really ugly imitation of suede. It’s hideous, but it’s functional.
  3. My only prescription med right now, and it has nothing to do with cancer. (I know, that’s amazing, right?)
  4. The earrings Dan picked up for me three days ago at Meijer “just because”. The are cats wearing witch hats.
  5. The double-sided Sharpie I use to write postcards to voters. One side is fine point. The other side is ultra-fine point.
  6. My MMJ vape. The changes in weather got me all like “OUCH!” I try to remember to take it every day just in case it feels like shrinking my brain tumor. But some days I forget.
  7. Vitamin D capsules. The doctor wants me to keep my levels up, and I just don’t spend a whole lot of time outside.
  8. The Sibley Guide to Birds. If you look closely, you can actually see the bird feeder out there in the back yard.
  9. An almost empty basket of Halloween candy. It only contained a partial bag of treats, but still. I’ve consumed way too much sugar in the last couple of days. (See #6.)
  10. Windex electronics wipes for cleaning my laptop and cell phone screen.
  11. Mary Karr’s The Art of Memoir. I’m using it as a desk reference while I continue writing my memoir.
  12. The Sassy Bottle™. Izzy likes to be a little jerk and scratch at the furniture. Turns out she likes being sprayed with water too, though. So now it’s a game and we’ve taught her to claw the upholstery for attention. Cats, man.