Now with 100% More Curb Appeal: Before and After

Now with 100% More Curb Appeal: Before and After

I’ll be starting another round of chemo tonight, which I’m not looking forward to. But it needs to be done, so…

Because of that, I don’t have a lot of time or energy to do a major blog post, but I do want to show you all what my mom and a family friend did this weekend, because it is amazing. They installed new shutters on the house, freshened up our landscaping, and painted our garage door.

It looks so good, and it’s really nice that we get to enjoy it for a bit before we sell.

It’s always wonderful to be reminded that there are good, caring people left in the world.

Before
After
Oncologist Appointment Rescheduled

Oncologist Appointment Rescheduled

I was supposed to have an oncologist appointment at Carle yesterday, but I woke up about 6:30 am feeling absolutely miserable. 

I didn’t have a fever and chalked it up to allergies. But I’m not ruling out that I caught something wheeling past the urgent care waiting area with my Rollator on my way to phlebotomy Tuesday morning. 

Children's Band-Aid on the back of white woman's hand. The bandage has a sky blue background with cartoon images of lions, giraffes, and hippos.

I should have worn an N95, but went surgical because I scheduled labs as early as possible to avoid the cootie-havers. (My appointment was at 7:45 and urgent care doesn’t open until 8:00.)

But there were people waiting for the walk-in clinic to open. Lesson learned.

It took two sticks before my veins gave up the goods. After the phlebotomist rooted around in the crook of my right elbow for a bit, I said the magic word: “Ouch.”

Even if it doesn’t hurt all that much, phlebotomists have a Pavlovian response to signs of discomfort or pain.* It was clear to me that nothing was going to happen, so I put an end to the expedition. She snaped off the tourniquet apologetically and started tapping the left arm with her index finger.

When she couldn’t get a vein to even pop up there, she asked me if she could look at my hands. Luckily one on the back of my left hand looked eager, and she struck crimson right away. (Bonus!  My  messed up nerves don’t feel much in my left arm.) 

The downside is they use a smaller gauge needle for drawing from the hand, and it felt an awkward eternity to get those vials filled. In addition to just generally having my fill of medical procedures, I’m terrible at small talk.

Finally she got what she needed and bandaged me up. “Aww,” I said, “at least I get a cute Band-Aid out of the deal!”

Lab results just posted this morning. Everything looks fine. My appointment with oncology is rescheduled for June 13.

I have updates on the remodeling at Mom’s but I’ll have to write about that later. I’ve been sitting upright too long.

*In stark contrast to doctors and nurses who feel it’s their professional duty to not give a flying rip when you say 7 out of 10.

ADA Bathroom Plans!

ADA Bathroom Plans!

After spending last week with Mom, daydreaming about these ADA bathroom plans, and waiting out more tornadoes in her basement, she drove me back to Urbana and helped us remove the wood shutters from the exterior of our house.

We have new ones to install to spruce up the place in preparation to sell, and I’ll share the AFTER pictures in a couple of weeks when that exterior work on the house is done. But the picture above is how things looked while removal was in-progress this weekend.

By the way, if you’re local and want free wood shutters, they’re sitting at the end of our driveway. I put a notice up on NextDoor though, so I can’t promise how long they’ll be sitting there. (We just watched Karen from the Indianapolis-based HGTV show Good Bones make head- and footboards out of some she had stashed away. Did I mention they’re free? Just saying.)

Anyway, as promised I created a GoFundMe for the remodel at Mom’s place, and I also tried setting up an integrated donation option here on the website for those who prefer giving through PayPal instead. I think the minimum donation for GoFundMe is $5 and the minimum donation through my website form is $3.

Full disclosure: I’ve never used the WordPress widget linked below, so if you’ve got $3 and want to help me test it out AND get closer to having that ADA-compliant shower installed, get clicking (or tapping or whatever).

UPDATE 1:41pm: I’m having issues getting this out of test mode and connecting it to my PayPal account. It’s broken. Sigh.

UPDATE: 2:13 pm: It wants me to set up a business PayPal account, and I am not a business. So, I’m scrapping the original link and putting in a plain PayPal link. (Continue reading for more options.)

Here are the plans for the bathroom that my brother Ryan put together. Words cannot express how excited I am to take a shower without risking my life. Walking around with a brain tumor in my head is quite enough thrill-seeking adventure for me, thank you very much. I’d like to move on from our current 1963-built nightmare of a tub/shower and step (or roll, when necessary) into a zero-entry shower if it’s all the same to everyone else.

ADA bathroom plans printed out.

Anyway, happy Monday to you. Here’s a list of all the ways you can help out if you are so inclined. Some of them are totally free!

Watch a video on my YouTube channel.

Place your next Amazon order using this referral link.

Give to my GoFundMe campaign.

Give through Paypal.

Make a donation to @EmilySuess on Venmo.

Make a donation to $EmilySuess on CashApp.

Share this (or any of my links) with your friends on social media.

Packing and Decluttering for the Move

Packing and Decluttering for the Move

Last week Mom came up to Urbana to help us start packing and decluttering. The week before that, my brother and sister-in-law helped us make some repairs in our main bathroom. (That was after my SIL ran 13.1 miles. She is unstoppable.) We don’t have a move date yet, but we don’t want to feel pressured when the time comes either. We are hopeful to get it done sometime this year.

Mom and I started with the room that seemed the most overwhelming to me: the office slash studio slash just-put-it-there-for-now-and-we’ll-deal-with-it-later room.

This means we packed away the majority of my art supplies. It was the right decision to make. Because, yes, I always feel like I should be drawing or coloring or painting or recording or editing a new video, but, no, I should not be prioritizing any of those things right now. It’s been so long since I’ve posted anything new to my channel, but it’s just going to have to be a little bit longer.

Having things (at least in this room) packed away neatly reminds me that I am doing exactly what I should be doing in this moment: preparing for a life change. There will be time to do more art when the move is done.

Here’s what the office looks like now. Mom brought her shredder for me to borrow so I can sort through the papers that have accumulated since we moved here in 2015.

Everything else is stacked in the closet and the boxes are labeled. Having just this much done makes me think what we are about to do is actually possible. Before, when all I could do was think about how impossible everything felt, all I did was worry. And, frankly, without help it would be impossible. I’m so grateful for everyone who has chipped in since my brain tumor diagnosis in 2017! This is just the latest in a long line of things I have to be thankful for.

Mom also helped us get the Wedgewood that belonged to Dan’s mom safely packed away for moving, and she made the first (of likely many) donations to Salt & Light, our neighborhood grocery and thrift store. We even got a small desk out to the curb that was picked up by someone too. Now the office can just be the place where all the packed stuff goes until IT’S TIME.

At mom’s, the basement remodel is moving ahead. Ryan’s plans are amazing and they’ve already chalked in lines where the rooms will be. Because costs are pretty high, and no construction project is complete without a few unanticipated challenges, I will be setting up a GoFundMe shortly for this project, separate from my medical fundraiser. As always, no one is pressured to give anything, but just be prepared for me to promote it. I’ll share more about it later once I have time to get everything set up.

Anyway, that’s where things are at the moment. Happy Monday.

My Cancer Diet

My Cancer Diet

My cancer diet caveat:
I’m not telling you what to eat. I’m talking about what I eat. If you feel like you need to tell me what I eat is wrong, knock yourself out. But know that I don’t care, particularly if you’re not my doctor.


Before I knew I had brain cancer, I spent A LOT of time with my local gastroenterologist. I was medically tested for ALL the food sensitivities, intolerances, and allergies. I have none.

For years, I tried elimination diets hoping to find out what I was doing to cause so much harm to my GI tract. And all the answers were always, “Girl, nothing. It’s not your diet.”

In hindsight, having my brain cancer diagnosis, I’m like, if my diet gave me this rare brain tumor? Well, it wouldn’t be a rare tumor would it? And people all over the Midwest would be breaking out in tumors in their mid-thirties.

Despite what the world would have me believe, my dietary choices were not the cause of my problems.

I mean, the GI distress was very real. But I was not lacking self control. I would have gladly given up anything to feel better–sugar, gluten, dairy, meat. And for different phases of my great dietary experiment, I did.

The problem was that the problem wasn’t food. In all the giving up* though, I accepted that whatever illness I had was not going away simply because I swore off eating food I liked.

That’s not to say I didn’t learn something in all that time. In fact I learned to listen to my gut, literally and figuratively.
Some foods are harder for me to digest and require more energy to process, so I avoid them. I don’t cut them out 100% because 1.) I’m both too laid back and too tired for that, 2.) chemo means craving foods that you only see once (if you know, you know), and 3.) disability and socioeconomic status mean not being hungry gets top priority.

And when I’m taking chemo, I am all about getting through the day without an emesis bag.

Anyway, this post is for two audiences. First, my fellow cancer patients and poors. Your diet doesn’t define you, and it’s healthy to eat what you like. Diet culture is the poison.

Second, internet randos with all the answers. It’s okay for other people to eat differently than you. Let it go. And if you just have to give unsolicited advice, don’t be surprised when we get pissed off.

*The freaking irony of not giving up on giving up. It burns!

Brain Tumor, Social Media, and WYGB

Brain Tumor, Social Media, and WYGB

Brain Tumor: Today’s visit with my oncologist

“Did you see your results?!” That’s the first thing my oncologist said to me at my appointment this morning. It must be as fantastic to give good news as it is to receive it. Especially if your patient has a brain tumor.

I’m really glad the lymph node stuff isn’t cancer. It wasn’t the most stressful what-if situation I’ve ever faced, but it was up there. Because one of the side-effects of temozolomide (the chemo I’m on) is lymphoma. Cancer patients are always worrying about something, including more cancer.

For now, I’m going back into my holding pattern. Letting my body rest and hoping the Very Angry Lymph Node continues to decrease in size. As my doctor said, it can be removed if it becomes unbearably painful or whatever, but nobody wants another medical procedure for me. Least of all me.

We talked a little bit about my plans to move to be closer to family, and then she told me there really wasn’t any reason to suffer through an MRI right now unless I felt some change in symptoms. Then she’d put an order in for one right away. Though my BP and pulse were kind of high, I was feeling pretty good. My pain is more tolerable, my fatigue is less debilitating, and I’m not as depressed as I was during yet another long, pandemic winter.

Social Media: CounterSocial is better than Twitter

That’s my opinion, and I’m sticking to it. I realize that not everyone will feel the same way. I’m just saying that CounterSocial is my preferred social media site at the moment, offering me a way to atually customize my experience—not just pretend to the way Twitter did.

(I tried so hard to set filters and whatnot on Twitter, but the angry-making stuff still always found me. I just got so tired of being consumed by the algorithm or thrown back into the “Home” timeline without consent. Yes, I will miss people that only Tweet, but sometimes change is necessary. And it is so necessary for me.)

I’ve given myself until May 15 to wrap up loose ends on Twitter, but honestly, I don’t even want to look at it anymore. It’s been yucky there for a while, but the recent turmoil over Elon buying the site has made it an absolute cesspool of a social network. I don’t have energy for that kind of stuff anymore, but even if I did I wouldn’t choose it for myself. See also: Facebook.

Anyway, I’m not deleting my profile, I still think I might want to yell at a customer service account from time to time. I just don’t plan to go there for my microblogging and socializing needs.

CoSo, as it’s lovingly called by its users, has a very GenX vibe at the moment. I fit there so well that I’ve already created a Pro account in the hopes that it will help as the site goes through this awkward growth spurt. (There are no ads. It has to be funded by users, which I’ve found makes them take pride in it and improves the overall experience for everyone–even those who are content to use the free version.)

I am still on Mastadon as well, but don’t find myself logging on there as much as CoSo. If you’d like more details about either, though, let me know. I can probably answer some basic questions.

WYGB: Read it free through May 31

I’ve got my webserial memoir, Who You Gonna Believe, open to the public for the rest of this month if you need to catch up or want to get started. It’s usually a Patreon perk, but every once in a while I open it up for public consumption. This is one of those times. I am hoping to get back to posting new chapters soon. But I’ve said that before. Maybe this time, I can actually do it! If you want to jump straight to the Table of Contents, just dive right in.

Chemo Week 5: A Very Brief Chemo Update

Chemo Week 5: A Very Brief Chemo Update

I realize that I’m a little behind in my blog update for this week. It’s largely because my nails were too long, and I can’t stand the feel of the laptop keys when they get like that. No. For real. It’s a thing, and I was just too tired to take care of them until now. It shouldn’t even be a thing because last time I was on chemo, my nails tore and broke at the slightest provocation. Maybe the difference is that I am not on dexamethasone this time? I have no idea.

Anyway…

I don’t have much of an update except to say that I saw an oncologist (not my oncologist, she’s on vacation or something) who knows that being on temozolomide is kind of awful but assured me I should remain at my 110mg dose for as long as it is possible. The highest tolerable dose is what I should be throwing at the tumor, and so that’s what I continue to do.

My next MRI and doctors appointment are scheduled for around the first week in November, and I continue to have labs done every 2 weeks.

My labs haven’t changed much at all in comparison with the baseline that was established before I started chemo, so my bloodwork indicates that I’m tolerating the stuff fairly well—even if it’s having a pretty severe impact on my pain and fatigue.

This month I’ve been trying to do a Zentangle a day. Here are a few of the tangles I’ve created so far, all despite Izzy’s interference. (In the featured image at the top of the page, she’s actually sitting on top of the page I was trying to draw on. Because of course she is.)

I said this was going to be a brief update, and I meant it. I’m trying to make sure I have enough energy to get some things done around the house today, including folding four loads of laundry.

Sorry for the delay in posting. I know some people only read the blog and start to wonder if I’m absent for a bit. I will make an effort to keep up with my Sunday schedule, but with Temozolomide I am not promising anything!

Chemo Week 4: So. Many. Pills.

Chemo Week 4: So. Many. Pills.

I usually shoot for Sunday to write these weekly updates, but it didn’t work out for Chemo Week 4 because, well, I didn’t feel like it. So here I am a day late and a dollar short, as my dad used to say. I’ve been thinking about him a lot lately. Partly because I miss him a lot and partly because he had cancer too several years ago and it’s hard to not think about and compare my experience to what I know about his.

Like, I was thinking how terrible it was that he had to go to work and started feeling pretty depressed before I realized that I am projecting my feelings about work onto him. A lot of the reasons I disliked jobs in the past had to do with sexism and crappy pay compared to my counterparts. When I realize he didn’t face those things, it comforts me a little. In a very twisted kind of way. He genuinely didn’t mind his job. But that is not at all where I intended to be going with this post.

temozolomide pills

Yesterday was Day 28 of chemo for me. It was a little depressing at first, but then it ended up being just another day on chemo. (Remember, I misunderstood my treatment in the beginning and thought I’d be done with chemo after 28 doses. Ha!)

I’m beginning my second of many, many 28-day cycles today. I got the shipment of temozolomide on Friday and I did a whole Twitter thread live-tweeting how I get all those pills ready for the month.

It’s actually a bit of an ordeal taking oral chemo. On the one hand, it’s nice to be at home and not at an infusion center during a pandemic. But on the other hand, I wonder if it’s easier having someone else administer treatment as opposed to feeding myself pills that make me miserable. It’s all awful, I know. But I have a lot of time to think about things I don’t want to think about, and then I end up tweeting or blogging about them.

Tangled yogi tutorial Sindoo Flower on kraft journal paper partially colored with Prismacolor pencils

I did have a little time to Zentangle this week, and every time I picked up the pen my strokes were a little more confident. I am currently working on another Tangled Yogi tutorial, because—as I’ve mentioned before, I think—I love colored pencil especially on the kraft paper in this journal. (I used four different Prismacolor pencils to get the green gems and flux pattern done here.)

If you’ve watched the Sindoo Flower tutorial or tried it yourself, you’ll see right away that this is not quite like her tangle. That’s because I got off track and had to improvise. Which is the whole point of Zentangle anyway, so I’m not getting down on myself. I’m just saying, it’s not what I intended when I set out, but I also don’t dislike what happened.

Deep, isn’t it? That’s kind of why I like Zentangle.

Speaking of. I found an Inktober 2021 Zentangle prompt list on Instagram while I was scrolling through my feed last night or the day before, and I think I want to give it a go. By some miracle, I made it through 2020 doing my own prompt list, which just feels so impossible this year. But maybe if I just use an existing prompt list and don’t try to do to much at once…

I don’t know. My favorite words lately are “we’ll see.”

I did manage to find the notebook I used for Inktober 2020, and had the brilliant idea to use it for this year. But I counted the pages I had left in it, and guess what? Only 30 blank ones left. Curses! I might just squeeze two prompts onto a single page. Or I might just tangle on a random tile or piece of paper. Stay tuned to find the answers to these and other very pressing questions.

Anyway, it’s dark and raining here today. The sound of the rain on the roof is pleasant but the change in weather also increases my everyday aches at the same time. Later this week it’s supposed to be like genuine fall weather–66 degrees or something. So I am trying to pump myself up for an outdoor walk. I’ve also already told Dan that he should plan on giving my hair a buzz. I like to keep it really short when life is hard–like using a number 1 guide kind of short, and I think I’m at about a number 3 at the moment.

When I got the laptop out today, I was happy to see there were comments on last week’s post waiting for me. I’m not the most timely in responding because I don’t get notifications for them, but I do appreciate when you guys take the time to leave a comment. I will get around to replying to them eventually!

Until next week, I’ll see you around the internet.

Donation Links: GoFundMe, PayPal

Chemo Week 3: Meet Chad, the Robot Vacuum

Chemo Week 3: Meet Chad, the Robot Vacuum

How has it been three weeks since I started chemo? Highlights of this past week include: getting a robot vacuum and learning how to use it, bulk prepping healthy smoothies to take with temozolomide, and enjoying more food and flavors than I thought possible while on Temo Chemo™. In all Chemo Week 3 wasn’t too bad.

Let’s start with the Neabot N1 Plus that arrived on Monday, because this thing is fan-fucking-tastic. First, we named our robot vacuum Chad because I was tired of saying “robot vacuum” all the time. It took a day or two for me to figure out how to operate Chad efficiently, but it is was 100% the funnest thing ever because in the end we have covid risk-free help with a chore that used to be massively impossible for us.

Izzy lies on the floor next to Chad, our new robot vacuum

Izzy and Boomer were both a little freaked out by Chad at first, but by the end of the first day, they had accepted our home’s new addition. Izzy would even park beside Chad and fall asleep waiting for him to start sucking again. It was so cute.

Chad’s noise level is tolerable while he’s running and is really stinking loud when he returns to home base to empty his dustbin. But the emptying only lasts a few seconds, and I wouldn’t say it’s any louder than a standard vacuum.

He’s mapped almost the entire house, so using the app I can tell Chad to clean a single area, the whole house, or a set of specific rooms. (If the rooms are too dirty, he struggles and things get clogged. So I recommend picking up the heavy stuff yourself one last time before you give this vacuum a go.)

If you want to see my play-by-play tweets including app screenshots and stuff, definitely check out my Twitter threads from this past week.

This past week I also changed up how I’m taking my temozolomide. I moved dose time to 1:00 pm and started bulk making smoothies and having one every day with my chemo. The result is that I have a few decent (it’s still chemo, guys, so “decent” is relative) hours in the morning to feel like an actual human being. Basically, I am now sleeping through the worst of the side effects.

The smoothies are tasting great, and because they help me stay hydrated, help repair my gut biome (they include yogurt), and help me get my whole day of fruit and veg in so I don’t have to feel guilty about just eating what sounds good to me the rest of the day.

Anyway, here’s the “recipe” for these bad boys:

2 lbs fresh strawberries
18 oz fresh blueberries
16 oz fresh raspberries
1/2 lb raw spinach
16 oz yogurt

I got my produce from Costco and blended the ingredients in a standard sized blender in two batches, just halving the ingredients above for each blend. Then I filled 5 of the 6 glass jars I recently purchased on Amazon and chucked them in the freezer. Then I set them out on the counter to thaw in the morning, and they are ready by chemo time.

A couple of notes: since I used all fresh (not frozen) fruit and veg, I didn’t add any water to the blender. I couldn’t get bananas on the day I got my Instacart order, but if I had I probably could have filled all 6 of the the 2-cup jars. (PS if you want to support me AND sign up for Instacart you can use referral code ESUESS17D148.)

Apple cider donut on a white plate

Because I stopped taking ondansetron this week, I’ve been feeling better. I’ve had fewer headaches and felt better hydrated. And because of that I’ve been able to escape a vicious catch-22 of puking and taking more ondansetron and getting dizzy and dehydrated and puking and taking more ondansetron.

I’m hitting the lemon ginger tea and the ginger candies pretty hard instead. And feeling less nauseated has meant eating is easier—enjoyable even! A wider variety of food is tasting good. Including this amazing apple cider donut from Dunkin’, some chicken satay from Siam Terrace last night, and my one true indulgence: caramel frappes from McDonald’s. (Your GoFundMe donations don’t just help me pay for the ongoing direct medical costs of the brain cancer, they also keep Dan and I from having to expend limited energy on cooking, which in turn lets us focus on living better with our maladies. So, thank you!)

Got $10 to spare and want to contribute to my Virtual Meal Train Fund for Week 4?

GoFundMe
paypal.me/EmilySuess
CashApp: $EmilySuess
Venmo: @EmilySuess

Chemo Week 2 Update

Chemo Week 2 Update

The only reason I’m writing this is because I need to stay upright for a few minutes. So here’s an update on how things are going during chemo week 2. I skipped the ondansetron (anti-nausea) this morning thinking I would be just fine…

And I was wrong about that.

On Monday I saw the oncologist and learned that I am not on a 28-day course of temozolomide. She would actually like to see me stay on chemo indefinitely.

“Like 5 years?” Were her exact words. She was wearing a mask, but I could tell by her eyes she was smiling. Her voice was upbeat. I appreciate that about her. She sees cancer patients all day long, and she can still pull off hopeful every time I see her.

I don’t know if I can do chemo everyday for five years. But I do think I can do it every day until November when I have my next MRI and re-evaluate. Maybe, as she suggested, we might have to lower the dose. I’ve also wondered about the possibility of having the weekends off at some point down the road. So I have something—anything—to look forward to.

I also said, “Maybe I’ll be able to tolerate it better after my body adjusts.” Honestly, I think I was possessed by the ghost of toxic positivity when I said that though.

As I tweeted earlier today, one of the things that keeps me going is knowing that I have chosen chemotherapy (at my oncologist’s recommendation) and I can unchoose it at any time. Any morning, I can just wake up and say “Not today, Satan.”

But I do sort of need to not live the rest of my life in bed. I tried to Zentangle yesterday, and it didn’t go well. My hands still don’t have much in the way of grip strength and the weakness leaves me with shaky, uncontrolled lines. The double vision also frustrates me. So I don’t know… I want to get back to posting the occasional video on my YouTube channel but I will have to figure out something. Because the old way of doing things, with significant editing, just isn’t going to work for me right now.

In other, happier news, I am kind of excited to report that I’m getting this robot vacuum tomorrow. I am fully embracing that I can’t vacuum anymore. And I can’t expect Dan to do #AllTheChores around here. As I’ve mentioned he has a disabling chronic condition too. So fingers crossed the vacuum will help us out some. I don’t get any peace at all looking around the house and wishing I had the energy to make it cleaner.

So how does a couple living off of one person’s disability income afford a robot vacuum, you ask? They don’t. They get help from people who care. My sister-in-law did the research on which one might work best and cost least, and then she and my brother contributed funds to help me purchase one, which gave me the guts to push my GoFundMe and Amazon wishlist again, and you know what? People always come through.

A lot of how I adapt to being on chemo long-term is wrapped up in me finding solutions to make things easier. In non-pandemic times, that might look like me hiring a cleaning service. But on active treatment in a world where people think wearing masks infringes on their freedoms more than them not wearing a mask infringes on my freedoms? Robot vacuum it is.

Anyway, I am once again getting too tired to keep thinking of words. If there’s something you want to know, ask me in the comments. Until next time. If you’re in the U.S., Happy Labor Day weekend. I hope you have some time off to relax.

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