WARNING: This post isn’t about any “second breakfast” Peregrin Took ever ate.
I tried to be a good patient and have oatmeal and a protein shake for breakfast yesterday morning. I even fetched the food from the kitchen myself and brought it back to bed.
But about halfway through, I started the reverse paristalsis panic.
(That’s your signal to stop reading if you’re a sympathetic barfer.)
My jaw got tight, and my salivary glands kicked into overdrive. I felt acute pain at the top of my stomach, and I could only process one overwhelming sensation: acridity.
“HELP!” I gargled, choking on the flecks of processed oats that stuck to the back of my throat on re-entry.
“What do you need?” Dan shouted while getting out of his chair. I didn’t answer. Couldn’t answer, technically. But I didn’t need to. The sound is distinct.
“C’mon, Boomer. Let’s check on Mom.”
I have barf bags right by the bed, but I wasn’t fast enough. The first heave was not well contained. There were oats and chocolate flavored plant protein on my chin, my shirt, my pajama pants, my right leg, and my fitted sheet.
(I buy what’s cheapest at the time I’m shopping, but these OWYN things are palatable under normal circumstances–no artificial sweeteners, which I despise. Just saying. It’s not the food’s fault.)
I call this set of sheets my chemo sheets now.
The first couple of days back on temozolomide after a break are the worst, by the way. My body will do its best to recalibrate, but things will be sketchy the first week or so.
Because of this, I’ve learned to take morning medications well in advance of breakfast. After all, Medicare doesn’t pay to replace the pills you barf up.
And also, have you ever tried to get a “controlled substance” filled a few days early?
But that’s a story I don’t feel up to writing, so back to this one.
“Friday is sheet washing day anyway,” Dan said. “I’ll get these going.”
So this might be redundant, but, um, yesterday didn’t start off all that great. However! Mom texted me that there was a giant shower in her driveway. And thinking about how one day I’ll be washing the Second Breakfast off without worrying about slipping and falling in the shower made me feel a little better.
This beauty is a lot like the shower that was in my hospital room at Barnes after I had surgery, and I managed that safely. Even with fresh staples in my head. So to say I’m ecstatic about seeing those handrails is an understatement.
P.S. If you’d like to help us cover some of the costs of the remodel, you can donate or just tell someone about this GoFundMe campaign.
I started another round of chemo last night. I used to keep track of these things by counting the day and the round, but that was back when I thought chemo was a finite thing. Now it’s indefinite. I have no idea how much of this crap I’ve swallowed.
My oncologist was hoping I could take the temozolomide every day, but my body has been pretty adamantly saying “hell no!” to that. So I take it when I can tolerate it.
At the moment there’s a lull in other important things that need to be done, so I’m on it again. Being on a break from it feels good at first, but then the anxiety starts to build.
Ever had anxiety over an exam you didn’t prepare for? It’s like that, only you also lie awake at night wondering if not taking the poison is adding to or subtracting from the number of days in your life.
Sorry, I don’t mean to be morbid. But I also don’t mean to have brain cancer.
The UK is about to give up the NHS for an American model of healthcare, and if you’ve known me for a while, you probably also know that I fancy myself a cautionary tale.
I’ve all but given up on the US doing anything about our healthcare problems. We are either in total denial, we enjoy watching people suffer, or—and this seems most likely—some disturbing combination of both.
The UK, however, maybe you’re open to reason? Maybe you can reverse course or at least prepare for what’s to come?
Don’t be like us. Save yourselves from for-profit healthcare models. No one should fight insurance companies when they’re sick. I don’t care if it’s cancer or the common cold.
No one should be bankrupted for wanting to be get better. For trying to live.
So I’m not going to be up to doing a whole lot today. With one dose of temozolomide, I’m already feeling the fatigue. And I’ve got things like eating and bathing I need energy for.
I will plug my fundraiser, because that’s the American way. Would be delightful to reach $1k this week. Work has started at mom’s. Some of the framing is up and the building permit is posted in the window.
For now, I’m going to watch something relaxing on YouTube. I’ve really been into antique furniture restoration videos lately.
I’ll see you all back here later.
P.S. I’m automatically sharing new blogs on social media sites I’m not using much. So if I don’t respond elsewhere, that’s why. I do try to keep up with comments here, but I’m slow.
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.
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.
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!
“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.