Brain Tumor

Sure, More Pains

Emily Suess

Yesterday I rode the FitDesk for three 30-minute sessions. Ninety minutes in 24 hours is my new record! While I was pedaling, I was thinking about how fun it would be to ride an actual bike again. But I don’t own a real bike, and I wouldn’t want to try to do anything that required an ability to balance my body in an actual street where there are actual cars anyway.

If I’m honest, I still struggle to walk without tipping over on most days, so I’m confident I’d need a safe place to try out my biking skills. Like a mega church parking lot on a Thursday afternoon or something. Which means someone else driving me and my bike to some such place. That seems like way too much work.

Anyway, it’s not likely to happen soon, but it’s something I’m adding to my List of Things That Prove I’m Not Completely Broken Yet.

***

Can chemo give you arthritis? I Googled it once, but didn’t find anything I considered a solid answer. I would think that possibly I’m just of the age I would have developed arthritis anyway, but these new pains came on suddenly instead of growing slowly and steadily over the years like it did with my mom. Chemo speeds up the breakdown of plenty of things, so why not? But then I know that it’s used to treat some forms of arthritis, so… whatever.

Bottom line is that I hurt a lot. Again.

 

Brain Tumor

August Harvest

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garden harvest.jpg

The garden has been hit or miss this year. The zucchini plant gave us one zucchini and then gave up the ghost, for example. The fennel looked good for a bit, and then it succumbed to something—over watered? Under watered? Planted too close to a rival? Who knows? (Probably someone who’s a little more meticulous about their garden. Our approach is to try our best and see what happens.)

We did manage to get a lot of tomatoes (a few cherry and a roma pictured here—many more were used to make sauce for a dinner of stuffed peppers Thursday), several green peppers, two eggplant, a basket full of jalapenos, and two pale cukes.

There’s also a loaf of homemade bread hiding away back there in the corner. Since my Dad fixed our Kitchen Aid mixer earlier this year, Dan has been more than willing to make our sandwich bread. It is such a treat, but because it doesn’t contain any preservatives it gets funky FAST. I have to hold my hand over my mouth just thinking about that last lone heel we pulled out of the cupboard.

I haven’t been baking as much the last week or so because I’ve been feeling a little under the weather. My coffee table refinishing project has also been stalled for a few days, but I am hoping to get back to it tomorrow. I’ve got the legs to sand before I can think about staining and varnishing.

Eh, anyway, that’s about all I’ve got for an update.

 

 

Brain Tumor

Emily’s Cancer Calendar: July

Emily Suess1 Comment

NOTE: Facebook no longer allows WordPress to automatically publish my new posts to my page. I’ll try to remember to do it manually, but if you want to be sure you’re notified when I write new content use the “Subscribe” button. (Located in the sidebar if you’re viewing on desktop or under post content if you’re viewing on a mobile device.)

July cancer calendar

Another month is done! That means that if you’re a Kindle owner and a member of Amazon Prime, you get to pick from some great, FREE First Reads books. Go pick yours, I’ll wait. (I snagged Happy Doomsday.)

OK, back to the calendar summary. July started off really, really strong. I turned my FitDesk pedal resistance to Level 2 on July 5, and then I never looked back. My legs are getting much stronger, I can feel it. I also pulled some 2-pound hand weights out of the closet to work on strengthening my arms and shoulders.

Even though I had 4 days with very sad faces, I managed to pedal for a total 1,091 minutes and 253 miles this month. I might have been inspired by all those dudes riding le Tour and climbing mountains. (We watched the race every morning. It’s tradition for us.) And ♫ Aux Champs Elysées ♫ is still stuck in my head.

When the Tour de France ended on Sunday, I deflated a little and said to Dan, “July is done. It’s already Fall isn’t it?”

And now I see that pumpkin spice everything is eating up my Facebook feed.

Oh well. Welcome to August everyone!

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

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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

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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 Suess2 Comments

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.