It’s Friday I’m in…Pain

It’s Friday I’m in…Pain

And just like that my good sleep streak is over. It was about 2:00 am when I fell asleep last night, and I didn’t get up until around 9:00 this morning. It’s Friday, and I’m in a whole lotta pain, kids.

“I hurt so much. What is happening to me?” I grumbled when Dan brought me my morning Liquid IV.

“I think it’s supposed to rain today.”

I’m like someone with arthritis. Sort of. I can predict the weather, but instead of a cranky knee or hip, my entire body screams out in inflammation—from my neck fat to my duodenum to my fifth metatarsal. Every thing hurts.

I’m scanning my body right now for something that doesn’t hurt, and I got nothing. Maaaaybe my right earlobe, but only if I don’t think about it too hard.

I’m glad I got some chores done yesterday (wait, am I though?), because today is going to be absolutely worthless. It took everything I had to microwave that bean and cheese burrito for lunch.

I took two Tylenol. God knows why, but I always start with Tylenol even though it doesn’t sooth anything. Not even my internalized feelings of uselessness.

I wonder if living in mom’s basement will help? I’m serious. Maybe spending time underground will shelter me from weather changes. Because Animal Crossing isn’t helping me at all today. I tried, though. Caught seven new species in about 90 minutes because it’s my first July playing.

I wish I’d told Dan to pick up some Ben & Jerry’s yesterday. I thought about putting it on the grocery list, but I was like, “Emily, you don’t need that.”

Well today I do. Thanks for nothing, internal voice of reason!

Evusheld Covid-19 Preventative and More Cancer Stuff

Evusheld Covid-19 Preventative and More Cancer Stuff

I’ve got a lot of cancer things to talk about in today’s episode, including getting the Evusheld Covid-19 preventative, scheduling #AllTheVaccines, scheduling my next MRI, and a pleasant prednisone surprise.

If you’re following along at home, you might remember that I rescheduled last week’s oncology appointment to yesterday afternoon. I thought it was going to be boring and routine, like a meeting that should have been an email. But, clearly, my doctor and I discussed a lot of stuff.

First up: Evusheld. It’s another preventative for Covid-19 that’s available for the immunocompromised. My doc said I qualified for it and recommended it. So I got Evusheld this morning at the cancer center.

My appointment was scheduled for 7:00, but I didn’t get to leave until about 9:00. The stuff has to thaw, and then you have to hang around for an hour for observation in case you have an allergic/adverse reaction.

There are reasons I set early appointments. Empty waiting rooms are one.

I picked out a shirt specifically for getting the two shots in my arms only to be told they were administered in the ass and be asked if it was OK if a new nurse watched.

The more the merrier. When you have cancer, I think you inevitably learn to leave your inhibitions at home. Next to the box of vomit bags probably. I don’t know.

So I came home with two Tweety Bird Band-Aids—one on each cheek. Cute.

As for side effects. I’m really tired now, but I don’t know if it’s the Evusheld, two days in a row getting dressed and leaving the house, or being up this morning at the butt crack of dawn. Maybe all of the above?

Next, my doctor and I discussed vaccines. I need my second Covid booster and my second shingles and pneumonia vaccines. (Apparently I *just* missed getting the new single-dose pneumonia vaccine. Curses!)

It’s a lot of shots, and getting them requires finely orchestrated scheduling. There are requirements for spreading them out, but also? Insurance. God, I hate insurance. 

The shingles vax isn’t covered because I’m too young, and the first one cost me $200 out of pocket because I’m not 50 yet. I expect the next to be at least that much. Literal and figurative gouging. If gas prices concern you, congratulations I guess.

It’s worth $400, though, because I had shingles a few months ago (thanks, cancer!) and I hope I never have them ever, ever again. 

I’d rather have another brain surgery. No lie.

Anyway, that left the perfunctory chemo questions and the MRI questionnaire that takes FOREVER. There was a new nurse observing that too, and when I responded no to whether I was claustrophobic, she looked at me, shocked, and said, “YOU’RE NOT?!”

This’ll be number 22 or 23. I’m over it, folks. Besides the new hospital machines are like Cadillacs compared to the tiny, dark mobile unit I was shoved into for MRI #1. I had to sing Jesus Loves the Little Children to myself to get through that first one without crying.

Brain MRI pro-tip: always ask for the washcloth over your eyes.

That MRI is scheduled for the last part of July. There will be some scanxiety but it has nothing to do with the process and everything to do with wondering about the results.

Lastly, surprise! I officially didn’t gain any weight* while on prednisone. My last three appointments only varied by like a pound. I’m still fat but not fatter, and my dexamethasone clothes from 2017 still fit like a giant garbage bag. (Thanks, chemo?)

That’s all for now. I need a nap.

*I don’t care how much I weigh. I just can’t afford new clothes right now. Did I mention Shingrix is like $200 a pop? 

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!

Pretty Sure it Wasn’t a Stroke, Part 2

Pretty Sure it Wasn’t a Stroke, Part 2

This week was wild. Not in a good way, and not even in a way that was anticipated. Tuesday my Mom and I were sharing a homemade smoothie, when things started feeling really weird for me, and I said, “Whass wrong wiff my tongue?” The TL;DR for those of you short on time is that for the second time in my life, a doctor has told me “I’m pretty sure it wasn’t a stroke.”

The first time was twenty years ago. Because eventually I determined that episode was a migraine, and I am inclined to believe that this episode is too. Though, if the symptoms that prompted the folks in the Carle Emergency Room to call a code stroke are migraine prodrome and aura symptoms, it’s the most horrible migraine I’ve had to date.

In fact, I still have the symptoms: my left side is experiencing all kinds of neuropathy ranging from pins and needles, to tingling, to burning, to numbness. My tongue isn’t working right, and I’m having a really hard time speaking clearly because I can’t articulate many interdental consonants—t, d, th.

It’s Saturday, so that’s going on five days now.

The muscles from my mid-back to the base of my skull are locked in a spasm. And I am this close to begging my doctor for a muscle relaxer to see if that will help any. So far I’ve just been taking Tylenol and a half dose of my cannabis edible before bed. I wake up feeling more relaxed first thing, but as the day goes on? Ooof.

The emergency room doctor ordered a CT scan, an MRI, an EKG, and the typical array of blood and urine tests and is confident I didn’t have a stroke, but because they can only tell me what I didn’t experience and not what I did, I am a little concerned about starting chemotherapy on Monday.

Oh, have I mentioned that yet? It is supposed to be 110mg of temozolomide every day for 28 days starting August 23. And I guess I’m still going to go with that, because if this most recent Not-A-Stroke has anything at all to do with the tumor (and not, say, just the stress of everything right now) I think delaying chemo would be a bad idea.

Plus, I just really want to get it over with.

Anyway, I am being very careful about how much screen time I’m getting each day, so I’m going to cut this post short. I’ve got more to say, but it’ll just have to wait until later.

If you feel like sending some good vibes into the universe, send some out for me and my family because today would’ve been my Dad’s 74th birthday. And it’s definitely hitting me harder than the days that were not his birthday.

Other quick updates and then I’m out: Dan is getting some meds (not THE meds though) on Wednesday, which is a relief. He is also setting up my chemo nest in the guest bedroom, so I’ll have a TV and an Xbox. (It gets lonely back there.) I am still waiting on the ER bill to come through, so please bear with me as I push those fundraising links once again:

Got $10 and want to help Emily? Here are the ways you can donate:

CashApp: $EmilySuess
Venmo: @EmilySuess

You can also find items I need on my Amazon chemo Wishlist

Cancer Clowns and How to Spot Them

Cancer Clowns and How to Spot Them

Before I get into the Cancer Clowns thing… a little appreciation:

I’m having trouble coming up with the right words to say how much love and comfort I’ve found in the cancer community on Twitter. They have offered me support and empathy at times when those things could not be found elsewhere. (Hello, pandemic!) And I’m as protective of those beautiful friends as I am my own family.

That’s why when a random cancer patient pisses me off, I put a clown icon over their profile picture and blackout their name and handle instead of outing them on my blog. The community doesn’t need infighting or grief.

Cancer Clowns™ don’t just show up on Twitter, though. They also pop up in the oncologist’s waiting room or stop you in Walmart as you and your Rollator are making a beeline for the Gatorade. On the best days a Cancer Clown is niggling and annoying, and on the worst days? A total menace.

So, before I tear the featured tweet to shreds, I want to be clear: Cancer Clowns are people who have been diagnosed with cancer. They are not (well-meaning but perhaps sometimes hurtfully awkward) cancer muggles or cancer caregivers—people for whom I have infinitely more grace and understanding. Cancer muggles are people who can’t fully understand the cancer life, and because of that—and this is important to acknowledge—I can’t and don’t expect them to refrain from accidentally saying something that hurts.

Here intent matters.

Alright, with those disclaimers out of the way, into the weeds we go.

The once cancer-having woman (her profile says she’s now no evidence of disease or NED) who wrote the above tweet—we’ll call her CeeCee from here on out—replied to one of my tweets where I wondered out loud if I should turn a mini fridge into a nightstand by saying “Sorry if this isn’t what you want to hear but…” which clues me in from the start that she’s not sorry at all about what she’s fixin’ to do.

(Sorry for another aside, but CeeCee’s lead-in reminds me of a brilliant line in the show Archer where Mallory says to Lana, “I mean, look. I don’t want to sound racist but…” And Lana responds sardonically, “But you’re gonna power through it.”)

(By the way, what I did there in that last paragraph. Did you see it?)

And then just as anticipated, CeeCee shoots of with some nonsense about how she only ate “healthy” calories. “Healthy” in this context is judgmental as fuck, but not everyone will immediately recognize it as such. Some people, like cancer patients who are having their first go-round with a CeeCee of their very own, will feel chastised or at-fault for their dietary choices when reading a comment like this one. I contend that’s ALWAYS the point of these bullshitters.

But CeeCee’s comments reveal she has quite a bit in common with the fat-shaming, exercise-obsessed people of the world—maybe she even was one before diagnosis—that everyone has the same access to food she does. That people who eat 99-cent cheeseburgers instead of 18-dollar vegan, organic meals from some meal kit delivery service could afford to eat “healthy.” If only they chose to. CeeCee’s comments presume all people (even all cancer patients, for fucksake!) possess the ability to cook or shop for themselves.

Y’all. Eating is healthy. Even greasy cheeseburgers have been known to keep people alive. Not everyone understands the roles that disability and poverty play on food choice, but if you’ve read this blog post to this point, maybe you’re starting to have an inkling. Shaming people about what they choose to eat is not the flex you think it is.

There’s also the hugely presumptive tone in CeeCee’s tweet that my cancer experience is like hers. I don’t know if she has/had brain cancer or not. I don’t know if she has IBS and issues with vitamin malabsorption or not. I don’t know if she was on rage-hunger enhancing steroids like dexamethasone or not. But more importantly, she knows none of that about me.

Finally, CeeCee doesn’t miss an opportunity to gloat: “Was told my results were amazing and I came through in remarkably good condition.”

Okay, so?

I mean, what an absolutely self-congratulatory trash sentence to write to someone about to go through her third regimen of chemotherapy. We can, all of us, celebrate our joys in life without pretending other people suffer BECAUSE THEY WANT TO.

This philosophy of consequential choice is so pervasive. I think it’s because people are scared.

We’ve been internalizing the message of personal responsibility for so long that we believe everything comes down to a choice we make. And if you can’t stop an existing cancer by eating the “right” thing, maybe you can’t prevent a cancer either.

It is scary. I know. But piling that heap of internalized bullshit on top of other cancer patients is a terrible way to go through this life. Stop doing it!

As I was recently reminded by @ThanksCancer on Twitter: When people die of cancer, it’s not because cancer patients failed. It’s because treatments failed.

Also? Death is not failure. It’s inevitable. Eat what you can keep down, and eat what gives you a little happiness while you’re enduring this hell, my fellow cancer havers.

CashApp: $EmilySuess
Venmo: @EmilySuess

You can also find on items I need on my Amazon Wishlist

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