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?

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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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