Brain Tumor

Because Sometimes SSDI Just Ain’t Enough

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Yeah, I take surveys and stuff to make a little extra cash. Don’t judge me. If you want to check it out, or even sign up, you can use my referral link. Just click the image below.

Join Swagbucks!

I’ve also created an Amazon storefront of recommendations for get well gifts particularly for those with cancer or those anticipating an overnight stay in the hospital. It’s roughly based on the wonderful things people gifted me to help me get through my brain surgery, post-hospital recovery, and chemotherapy.

It’s an affiliate storefront, so I make a small commission if you buy something after visiting the link. (Your price doesn’t change though.) The hope is that through this storefront I can earn a little moolah to supplement my SSDI income. So browse the list, share and bookmark the link if you feel like helping out. I plan to make periodic additions and updates.

get well gifts for cancer patients

Emily’s Gifts to Get Well

Brain Tumor

One Full Year of Logging Meals on MyFitnessPal

Emily Suess1 Comment

Screenshot_2018-07-17-11-33-53.jpg

Three hundred and sixty-five days. That’s every single day for an entire year. I logged my meals, my snacks, my fluids, my exercise, my weed, and I even logged my Tylenol and Tums and Flonase.

My obsession with logging food and medicine was about 35% my wanting to see what foods and drugs made me feel miserable and about 65% me being sick and tired of medical professionals insisting my eating habits were causing problems.

“You need to eat more…”

“NO! Look at my food logs!”

Anyway, it’s an accomplishment to keep up something like this every day for a year when that year includes several months of hating food due to chemotherapy. I’m proud of myself.

Brain Tumor · House and Home · Memories

Father’s Day Rocks

Emily SuessLeave a comment
Yes, I know I’m a couple of weeks late on the Father’s Day thing. It’s because I knew my parents would be passing through Urbana at the end of this week, and I figured I’d just hand my dad his Father’s Day rock instead of try to mail it.
 
(For Mother’s Day, I gave my mom a small succulent I planted myself. My theme for the parents this year was something like “Things an 8 year old might give her parents.”)
This is only the second rock I’ve ever painted. It’s a hobby I think I might want to take up, but I don’t really know what I’m doing yet.
Anyway, I do like the way this one turned out. It’s freehand, which I think adds to its charm. I painted the white field as a background first, and then sketched the Cubs logo in roughly with pencil before painting it. Smooth lines on small rocks with skinny brushes are difficult to achieve even if you haven’t had brain surgery. I’m proud of my work.
cubs painted rock.jpg
Brain Tumor · House and Home

Emily’s Cancer Calendar: June

Emily SuessLeave a comment

calendar

June was phenomenal as far as my FitDesk stats go: 900 minutes and 220 miles. I also mowed twice, celebrated my 90th day since the end of chemo with a frozen margarita from Casa del Mar, traveled to Milwaukee to celebrate Dan’s birthday, and baked a couple of cakes.

***

We just returned from a trip to Meijer, where we bought a few plants, a box of granola cereal, and a pint of buttermilk (for another bundt cake I want to try making). Even though the store was sufficiently air conditioned, I couldn’t take any more. I am wilted. So I’m going to eat my cold cereal, and watch Dan play video games. But before go, I’m going to leave you with a few pictures of the yard.

 

Brain Tumor · Memories

Q: What’s Worse than Having a Brain Tumor?

Emily Suess1 Comment

brainA:

A while ago I got a message from my Wahington University Physicians patient portal that they were switching over to a new system and that I should make copies of any documents in there I wanted to keep.

It took me a few weeks, but I finally got around to saving some of those documents. I put the MRI, cytology, and surgical pathology notes in a folder on my laptop, skipping over the dozens and dozens of blood lab reports.

The new files from Wash U now live with a shitload of other visit summaries and procedural notes I collected from years of trying to find out what was wrong with me.

Halfway through this monumental task, I came across the report from my very first MRI on February 2, 2017. The title of the report read: “MRI Cervical Spine and Brain With and Without Contrast”. A few lines down it said “INDICATION: Weakness, clonus, abnormal gait.”

I started crying.

***

It’s hard to put my finger on exactly why the tears started flowing, but it’s a little bit relief that someone finally figured out was wrong with me, a little bit gratitude that I was still alive, a little bit revisiting the trauma of being told I had a brain tumor, and a whole lot of emotional damage from being treated like an attention seeking liar.

***

I am two different people now. There’s before-diagnosis Emily and there’s after-diagnosis Emily, and after-diagnosis Emily is very, very protective of before-diagnosis Emily. She is frustrated that she can’t reach out and console the woman who was brushed off by doctors for years.

If I could, I’d give BDE a big hug and say, “Prepare yourself. That physician’s assistant is going to roll her eyes at you because you asked about the possibility of a seronegative condition. And the implication will be that you don’t have the proper medical training to use the word seronegative—not like she does. And when you burst into toddler-like sobs because you can no longer help your husband with household chores, she won’t get it. She will mistake your grief over your accumulating disabilities as a cry for help. ‘Are you safe at home?’ she’ll ask.”

I’d also tell her about the doctor that was going to gaslight her over her weight gain. “Cymbalta adds three, maybe five pounds at most.”

“Another will ask you to explain why you don’t walk right, even though he has the fancy tests and the training to find the answers.

Another doctor would attribute one of BDE’s abnormal test results to an issue with a device and never tell her about it. “You’ll overhear her tell the technician ‘That can’t be right’ and nothing more will be done until you can’t walk and have to be wheeled into the doctor’s office.”

“You’re going to be so angry and hurt,” I’d tell BDE. “You’re going to want to sue the worst of the people that failed you. But you’ll be too tired, too emotionally depleted, too financially strapped to even ask a lawyer if you have a case.”

***

I can’t finish this post right now, but I feel like it should end with someone shouting LISTEN TO WOMEN.

Brain Tumor

A Brain Mystery

Emily Suess2 Comments

I lived in the same house in Mt. Vernon, Indiana from 1981 to 1997, until I was 17 years old.

I read The Handmaid’s Tale on my Kindle, which I received as a Christmas gift from Dan sometime around 2011. The book still lives on the device along with all of the other ebooks I’ve read.

Yet I have a vivid memory—something I see very clearly in my mind’s eye—of reading The Handmaid’s Tale on my Kindle in my bedroom in Mt. Vernon, Indiana.

I want to know how this is possible. Did radiation fry some important bits in my temporal lobe? Did chemo short out some neurons? Can I time travel?

Memories

I’m Not Sorry if This Offends You

Emily Suess5 Comments

Sit back. I’m going to tell you guys a little story about my youth.

It’s 1992. I am in sixth grade Sunday School class in a small town (population 7,000) Baptist church. The class consists of one sweet and mild-mannered teacher, a half dozen run-of-the-mill tweenage kids dragged to church by their parents, one folding table, twelve metal folding chairs, a corner cabinet with a few Bibles stuffed in it, and one Certifiable Asshole.

***

The certifiable asshole—CA, we’ll call him—was a towheaded brat who enjoyed a certain level of popularity at our public school during the week. A friend of mine once asked if she could sleep over at my house and go to church with me in the morning “because [CA] goes to your church and he’s really cute.” I think he played soccer or baseball or maybe both.

He was the adolescent equivalent of the guy at the office who “well actually”s all the women in a meeting and then repeats what they said verbatim.

Yeah, I know.

CA didn’t come from an Every Sunday™ kind of family like I did. He was in attendance at Sunday School, if I’m being generous, maybe 60% of the time. He was an entitled young man, prone to blurting rude, hurtful things at his peers. Whether to get a reaction or just make himself feel superior, I can’t say. What I can say, is that as a quiet, pimply, awkward 12-year-old girl, I preferred the 40% of Sundays I didn’t have to look at his smug-ass face.

“Your dad’s sermons are soooooo boring,” he once told the preacher’s kid, apropos of nothing.

“When are you bringing doughnuts and chocolate milk again,” he asked our teacher another morning. She had provided them as a treat once, and he either didn’t know or didn’t care that he was being rude.

“That dress is ugly,” he greeted me one rare Sunday morning when I was feeling particularly well put together.

See what I mean? Cer. Ti. Fi. A. Ble. ASSHOLE.

***

Our church used to have fifth Sunday dinners, a church-wide potluck held in the Family Life Center after the sermon every time there were five Sundays in a month. It happened a few times a year.

There was one lady who showed up without fail on every fifth Sunday. She was elderly and quiet and black. She dressed nicely, but you could tell she didn’t have a lot of money for clothes or anything. She didn’t appear to be close with anyone in the congregation. I mean, I never noticed anyone saying anything more than a polite good morning to her, but maybe someone did. It’s not like I was watching her closely, knowing I’d be writing this blog post 26 years later.

***

“Mrs. M is here for lunch,” CA said to our teacher one fifth Sunday. “She only shows up for the food, why doesn’t she ever come to church any other time?”

I waited for the teacher to say something about how Jesus told us to be kind to everybody. How maybe if CA wanted her to be at church every Sunday he should bring her something to eat instead of demanding she be at church every Sunday just to be deemed worthy of food three or four times a year.

The teacher took a book out of her tote bag and told us where we could find the scripture for the lesson if we wanted to follow along in our Bibles.

***

It’s been ten years since I’ve put even my big toe inside a church. Twenty since I’ve wanted to. It’s not because I turned bitter, either. It’s because Christians have gotten worse. Immigrant-hating, child-caging kind of worse.

Y’all m*****f****** need Jesus.