Emily’s Cancer Calendar: June

Emily’s Cancer Calendar: June

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.

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

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

A:

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.

A Brain Mystery

A Brain Mystery

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?

I’m Not Sorry if This Offends You

I’m Not Sorry if This Offends You

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.

Walking Under Willows

Walking Under Willows

After lunch I was itching to do something, so I asked Dan if he’d take me and Boomer to a little man-made pond near our house. On the north side of the water’s edge is a nice commercial area with professional buildings and a few restaurants. On the south side it’s nothing but cornfield. A flat, wide sidewalk encircles the pond, and there are three benches at various points on the perimeter. It’s mostly in the blazing sun, except for a couple of gorgeous willow trees.

I walked the whole thing in 84 °F heat while holding Boomer’s leash. He’s pretty gentle with me, but even his leisurely walking pace is challenging. I managed the walk, stopping at two of the benches for just a few seconds before picking up and carrying on.

The perimeter is about four tenths of a mile according to Google Maps. I managed to maintain my balance for almost the entire walk. I leaned on Dan’s arm only once when Boomer’s change of pace and direction shook my confidence.

When we were done, my face was turning red and splotchy from the heat, and Boomer’s tongue practically dragged on the ground. The sun is intense, and I may have mentioned my extreme intolerance for heat. (I think that’s mostly a result of the brain tumor messing up my body’s autonomic functions.)

pond

I’ve decided we’ll definitely go back. It’s a good distance for me to improve my balance while walking without overdoing it. And I think maybe a picnic under one of those willows would be nice.

willow
I Mowed This

I Mowed This

Please ignore the debris lurking in the shadows back by the fence. Tornadoes ripped through our area a couple of days ago, and we lost a few limbs. What I would like you to notice are the fresh lines in the grass that I PUT THERE.

That I’ve been able to help Dan mow the lawn (walk behind a self-propelled machine) this year is monumental. There are a few things that have made this possible.

  1. Thanks to my mom, I discovered Flonase. I am so allergic to grass I couldn’t even. But now I can.
  2. I don’t have to mow every day. I get 6 or 7 days off between every job!
  3. After I bought a manual push mower in 2015, Dan commended me for my commitment to getting in shape and trying to protect the environment, then he promptly bought a self-propelled gas mower. (I didn’t know I had a brain tumor when I made the overly ambitious purchase, but he knew that neither of us were in any condition to work that hard in extreme heat.)
  4. I’ve lost 39 pounds. I’m still burdened by as many extra pounds, but getting rid of those has made it easier for my body to continue recovering from months of chemotherapy. I’m getting stronger instead of weaker for the first time in years. Literally years.
  5.  I love my yard. Sitting in an outdoor rocking chair at the end of the day and admiring the work that Dan and I have put into it is life-affirming for me. I’m not withering away. I’m doing things. And hopefully every day I will be able to do a little bit more.
boomer.jpg
Disabled and Baking Cake

Disabled and Baking Cake

My permanent disability parking placard came in the mail this weekend. Getting it is bittersweet, because it’s so helpful to have. But also, I don’t really want to need one. Holding the placard in my hand forced me to reflect on the last year or so, and it bummed me out a little.

So I thought I’d try to focus on a thing I can still do in spite of my tumor and last year’s biopsy, radiation, and months of chemotherapy. Unfortunately for my waistline that thing is bake cake.

This story really begins last Wednesday on Dan’s birthday. I made him Nigella’s Chocolate Guinness Cake* (with a bottle of New Glarus Coffee Stout from his stash of special birthday beers instead of Guinness). Making him this cake is a birthday tradition. It’s really dense and really moist, but it’s not really sweet. It’s sooooo delicious.

We didn’t have a cake stand, so I plopped it on a pizza plate and later covered the leftovers with an inverted bowl from our salad spinner.

Well, a sweet friend of ours, Dawn, couldn’t let us go on living life without a proper cake stand and decided to gift us one. I immediately started looking for another cake to bake and settled on this Pistachio Pudding Cake**.

I started wobbling around the kitchen, and it baked while severe storms moved through our area. I was pleased with how it turned out.

pistachio cake

Here it is again, pictured with Dan’s beers. That’s just coincidence, I don’t necessarily recommended pairing beer and cake. (Yeah, the cake is made with three boxes of instant pudding so it’s got that perfectly unnatural green tint and semi-homemade flair.)

pistachio cake 2

Both cakes are delicious.


* The frosting is store bought. We weren’t in the mood for cream cheese, and opted for a buttercream instead.
** Again, we skipped the cream cheese frosting. Instead I iced it with a powdered sugar, water, and orange zest drizzle. Also, I had to add an extra 1/2 cup of milk to this cake batter. It was so thick without it, my hand mixer couldn’t deal.

The More You Know: Long-Term Disability Insurance Edition

The More You Know: Long-Term Disability Insurance Edition

You know what’s weird? Reporting your health to the long-term disability insurance company and having to answer pretty invasive health questions so they keep giving you the money they owe you but are hoping desperately they can wriggle out of paying you.

I feel like I need a shower after I reply to their emails. When I see their number on the caller ID, it triggers my anxiety.

It’s like, I have brain cancer. Pretty much the only scenario I can foresee where they don’t owe me money is if I die. I gave them money before, so they’d have to give me money now. But they get to ask questions about what my brain tumor is doing to me that I have to answer carefully so as not to trigger some diabolically planned loophole that means they don’t have to pay me. It’s stressful, let me tell ya.

And it’s hard for me to picture the individual representatives I deal with as anything more than victims. They need jobs, and keeping those jobs means following the slime-covered rules. Still. The dude who thought up the first insurance company? Must’ve been born straight out of Satan’s asshole.

Thanks for Everything, Milwaukee!

Thanks for Everything, Milwaukee!

The trip to Milwaukee turned out to be loads of fun. The party to celebrate Dan and his twin brother Dave on Saturday included family and friends and plenty of food and cake and beer.

The birthday boys.

Dan and Dave.jpg

Cake!

Family. (All at various points of inebriation. Ha!)

On Sunday, we scooted around South Milwaukee, Dan’s hometown. We drove through Grant Park to gawk at the beauty of Lake Michigan and grab a few small rocks from the beach to put in our landscaping, drove by the house Dan grew up in, shopped the local grocery stores for some favorite eats we can’t find where we live, and picked up a coffee table—a family heirloom—that his niece had been holding onto for us.

It was a busier day than I had anticipated, but the cooler temps and the fresh air were great. I was feeling pretty good (even though neither of us slept particularly well).

So when we got home yesterday, the first thing I did was take a two-hour nap. There’s just nothing like your own bed!

Once we’re fully recovered, we’ve got more projects to complete around the house. It’s shaping up to be a great summer. I am so glad.

First Adventures

First Adventures

In just one more sleep, I’ll be taking my first non-doctor related road trip since…well, I’m not sure. (That’s the thing about brain surgery and chemotherapy. It tends to muddle history a bit.)

We’re headed to Milwaukee for the weekend. Dan and his twin brother are turning 50 this month, and there’s going to be a happy little surprise to-do for the both of them (which is why I won’t be publishing this until after our return). Dan’s sister-in-law is planning the whole thing from the venue to the birthday cake, and I love her to death for including us. Because although I’m feeling better these days, planning out-of-town events isn’t exactly something I have the brain power to pull off.

On our way tomorrow, we have to drop off Boomer at the veterinarian for boarding. He’ll be fine. (He is, quite possibly, the most social dog I’ve ever met in my life and the people at our vet’s office are wonderful.) But I’m starting to feel a little clingy about leaving him behind. He still walks me down the hallway from the living room to the bathroom on those days when I’m extra wobbly, his big brown eyes full of concern.

Izzy will be staying at home like cats do when their humans are only gone for a couple of days. I’ll miss her attitude a little. I won’t miss her pushing all my shit off the table. Ha!

I’m also a little worried about my third and final Asiatic lily opening up while we’re in Wisconsin. Dan promises me I won’t miss anything. It’s a little ridiculous, but it has been so much fun watching our flowers and vegetables grow. Last summer I struggled. A lot. This summer I have become slightly (ever so slightly) more tolerant of the heat and am strong enough to help plant flowers, mow the back yard, water the garden, and get a few minutes of sunshine. I’ve been eyeing those lilies every day, because we had no idea they’d come back this year. They have, and they are big and brilliant.

Anyhoo, got some chores to get done before we hit the road tomorrow.

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