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? 

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 chemo I am not promising anything!

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.

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Brain Cancer Rant

Brain Cancer Rant

WARNING: Incoming brain cancer rant.

You know what I’m pissed off about right this second? I should be planning something fun to do with Dan before chemotherapy starts, and instead I’m fighting insurance to get them to pay for the roughly $10,000 in temozolomide I’m going to need.

This is seriously getting so old. I’ve had so many different kinds of health insurance during this years-long ordeal with the brain tumor: employer sponsored, ACA marketplace, Medicaid, and Medicare. And not one of them has ever covered all they claimed to.

I’ve lost count of how many times an “oh yeah, that’s definitely covered” has turned into “oops, nope, we won’t be paying for that” right at the buzzer.

And let’s not forget that year-long fight with Lincoln Financial Group that required lawyers and multiple appeals to get the company to pay my disability insurance like they promised they would. Being without that supplemental income for 12 months didn’t exactly do great things for my bullshit credit rating.

“Sorry, you can’t buy a new car to get to your cancer treatments because you got cancer, your health insurance carrier refused to pay for a lot of stuff, you have outstanding hospital bills, a laughably small income, and now we’re pretty sure you’re a high-risk for defaulting on a mortgage. Maybe if you were better with money and didn’t buy so many lattes.”

Guys, I totally should have done a better job managing all that money I’m not allowed to have. It’s true.

Anyway, I’d also like to get my house somewhat cleaned and organized before my day-to-day is just me throwing up and handing the vomit bag to Dan. But I’m right smack dab in the middle of Can’tlandia right now. The unsick will think I’m exaggerating and lazy. That I could fold the laundry if I wanted to bad enough. Fact is they just don’t know yet. They don’t know what it’s like to be physically and mentally incapacitated by Overwhelm™. What I characterize as executive dysfunction on dexamethasone.

That’s a whole other thing. Worrying about being put on dex again. Keeping my fingers crossed I don’t need it, because my legs will just buckle if I put on any more weight.

Okay, that’s all for now. Don’t let my pissy sarcasm distract from how grateful I am for the outpouring of support I’ve received since my announcement. Sometimes you gotta vent the Instant Pot. Know what I mean?

More info and/or ranting to come, I’m sure.

One Year Apart

The picture on the right is from one year ago today: August 23, 2017. It popped up in my Facebook memories, and I was like Whoa! I am not just 45 pounds heavier, I’m also swollen from taking steroids. (Dexamethasone is a wicked drug.) The picture on the left is one I took this morning, because I wanted a side-by-side comparison.

I don’t have a lot to say about it other than I am fascinated.

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