Chemo Week 1 is Complete!

Chemo Week 1 is Complete!

About an hour ago I took my seventh dose of chemo. And that means I’ve officially completed my first 7 days of temozolomide. Chemo week 1 down. Only 3 more weeks to go!

Only.

I’ve been chronicling the day-by-day over on Twitter. If you’re interested in reading about my treatment on the micro level, you can check out the threads there. (You shouldn’t need to have an account to read them, only to interact with them.) Here are the links for your convenience:

Day 1
Day 2
Day 3
Day 4
Day 5
Day 6
Day 7

The good news, I suppose, is that I did not have an adverse reaction to the chemotherapy. I was pretty sure I would be okay with the low dose—which is why I said I was willing to do it—but I’d be lying if I said I wasn’t a little scared about the possibility of another bad reaction. When that first dose didn’t turn my lips blue and cause me to break out in hives, I was breathing a little easier. (But only figuratively. Chemo fatigue is one hundred percent for real.)

After considering everything in context now, I think what landed me in the ER in 2017 on the adjuvant dose was that it was just TOO MUCH. My body has always been super sensitive to medications, and I think that whole episode was my body’s way of telling doctors not to prescribe my medications by whatever weight criteria they typically use.

Nothing about me or my diagnosis is typical. Nothing at all.

The bad news is that chemo is still chemo, and there are side effects, and they are not fun. Around Day 3 I was completely miserable because I couldn’t poop. (Oh, I’m sorry. If you want cancer glam, you have arrived at the wrong blog.) And as someone who has IBS, I can tell you I much prefer to have IBS-D than IBS-C. With diarrhea, the symptoms maybe disabling, but they are acute and over by noon. With constipation, it feels like the dam will never break, and it is painful and nauseating and depressing. I am so much better—mentally—at handling IBS-D. But waiting for the Senekot to work is not something I excel at doing.

Chemo is a bitch, and it screws up everything it touches. The way the pharmacist explained it was like this:

Chemo targets the fastest growing cells in the body because: cancer. Cancer cells grow quickly and so the chemo targets fast growing cells. The problem is, it’s not great at targeting cancer cells specifically. So other cells that turnover quickly are affected too. Hair cells, gut cells, skin cells. And that leads to things like hair loss, GI distress, rashes, etc. Anyway, that’s how I understand it.

There has been some more good news this week. First of all, every physical item in my Amazon chemo wishlist has so far been fulfilled. (People are wonderful sometimes, aren’t they?) If something comes up later, I might add to it. I did have GrubHub and Instacart e-mail delivery gift cards on it before, but I can’t seem to get them back. I don’t know what gives, but I do know that I am too tired to try and make it work. Anyway, with Dan and I both out of commission right now, those are super helpful. (Dan got his meds this week, finally. But he has to give himself injections and his body is currently…adjusting? maybe? to the new medication. It’s not exactly a fun time for him, but that’s his story to tell.)

I also—just this morning—reached the $5k mark on my GoFundMe. And if you’ve donated to or shared that campaign or both, I want to thank you from the bottom of my heart. It’s nice to not have to worry about how to pay for stuff while I do chemo. If you don’t know, just trust me. It’s a huge relief to be like, “Wow, I don’t have to stress about this one!”

Did I say thank you? Thank you.

I’m reaching the part of the day where my eyes get really heavy and I fall back asleep, so I’m going to go rest now.

Oh, I almost forgot: my first week labs were good. All counts within range. Basically, we want them in range the whole time, because if anything gets too low, we might have to postpone chemo for a little bit and finish it after the numbers come back up. We don’t want that because we don’t want to drag this thing out, right? We just want to get it over with. But I’ll let you know if the lab numbers get wonky.

OK, really signing off this time. Hope you all have a good one, and I’ll report back here probably next week, unless there’s some reason to post sooner.

Peace, love, and vaccines. (I’m team Pfizer from way back in March, and I’m not magnetized.)

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

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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:

GoFundMe
paypal.me/EmilySuess
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.

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CashApp: $EmilySuess
Venmo: @EmilySuess

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

Chemo Season 3 Trailer

Chemo Season 3 Trailer

Yesterday, a giant box arrived at the house. Inside the box was a Styrofoam cooler. And inside the cooler was a waterproof bag. And inside the bag were two paper sacks and inside the sacks were all of these. It’s almost time for Chemo Season 3.

16 boxes and two pill bottles of temozolomide

This is what a 28-day regimen of 110 mg total of temozolomide looks like fresh out of the box. Everything will be staying neatly tucked away in its original packaging until it’s time to swallow the pills. There are all kinds of “don’t let this come in contact with your skin or eyes or mucous membranes!” warnings. And somehow I get to reconcile that with the instructions the doctor gives to swallow THREE of them at a time.

Put them in my actual stomach and let them wreak havoc on my GI tract? On purpose? Sure! Sounds great.

Now, I’ve taken this chemo before. In 2017, when I was initially diagnosed, I did a round of temozolomide simultaneously with my radiation. (Chemo Season 1) Then, as adjuvant therapy a couple of weeks later, I went on a jacked up dose of temozolomide. Or, rather, I was supposed to take a jacked up monthly dose for several months.

However, I had a quite serious episode after swallowing that first adjuvant dose. If you’ve been around since that time, you may remember that my body was like, “Fuck this, I’m out” and then Dan rushed me to the emergency room.

(Did I mention when you take chemo in pill form you just do it at home like it’s any other pill? If something goes sideways, you’re just kind of standing in your vomit-coated PJs like, “What the fuck should I do now?)

When I arrived at the hospital, the ER doctors (here in Urbana) didn’t really know what was going on, and when they contacted my former oncologist (in St. Louis) it still wasn’t clear to him either. The gist of the back-and-forth was: “Wow, no one’s ever reacted to treatment like that before! You’re so unique! Which, okay. Fair.

So I had some allergy tests done while the doctors let my body recover. The allergy tests were inconclusive, and they decided to play it safe and prescribe me CCNU (also called gleostine) instead. (Chemo Season 2)

I wouldn’t say I tolerated the CCNU well. I just, you know, did about as well as you’d expect a cancer patient to do on chemo.

All of that recapping of previous chemo seasons is just to set you up for this: I’m currently teetering between “this time will be fine because I’m back to the smaller dose of temozolomide” and “OMG, this shit is going to send me to the ER in the middle of a fucking pandemic.”

Ultimately, the decision to take temozolomide was mine, and I told my oncologist that I was willing to try it again as long as it was at the smaller dose. But that does not mean I’m not periodically freaking out about taking it again.

Monday is my phone “teach” from the chemo nurse at Carle. (It’s usually done in-person, but PANDEMIC! So I am very comfortable not going to the hospital unless it is absolutely necessary.) Monday is when I will find out exactly how and when they want me to take the pills. So in the meantime, these boxes are going to stay tucked away in a cabinet by my bed.

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

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

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

Chemotherapy Update

Chemotherapy Update

After much drama involving an initial denial of my chemotherapy pills, temozolomide, the ball is finally moving again on my next round of cancer treatment. So I thought I’d do a little chemotherapy update.

If you watched me melting down in real-time on Twitter, I’m sorry you had to see that. But even more sorry I had to endure it. There is nothing particularly pretty about cancer or the state of healthcare in the United States.

I’m super groggy after taking a new dose of amitriptyline last night to help me sleep better and lessen my anxiety, so I’ll just briefly summarize where I’m at:

  • The hospital’s specialty pharmacy will mail 28 doses of chemo to me this week
  • Monday I will have a telemed appointment to go over my treatment
  • Palliative care is helping me adjust my meds to handle the additional stress and anxiety I’m dealing with
  • I will be doing treatment here in Urbana through Carle this time instead of in St. Louis like I did in 2017
  • My mom was planning on coming Sunday before I even knew about the chemo, so I think we’ll get the house in order (well, closer to it) before Dan and I are completely exhausted by everything
  • Dan still doesn’t have an approval for coverage of his meds (which we really need him to have before he starts helping me through this). Once again we are at the mercy of an insurance company that simply doesn’t give a shit.
  • I’m worrying at normal intervals about getting treatment as we ride into another wave of this pandemic. (Dan and I were both vaccinated back in March; I’m more concerned about the availability of hospital beds. Last time I did chemo, I had to go to the ER and also get IV fluids.)

I’m eager to get this round of chemo behind me and reluctant to take the first dose all at the same time. I’ll update again when I have more news to share. If you have questions in the meantime, feel free to ask. Replying to comments might give me a place to channel my nervous energy. 🙂

Tweet text: Just a reminder that when ICUs are overwhelmed with Covid cases, it doesn’t just mean they don’t have capacity to admit any more patients with Covid. Heart attacks, strokes, car accidents, you name it, it means there’s no capacity for those patients, either.

Love you all. Get your vaccine.

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, but for now I’m going to Zentangle.

Fuggin Cancer

Fuggin Cancer

There are lots of irritating things about fuggin cancer, not the least of which is needing to post an update when you least feel like it. That’s where I’m at right now:

Tired of thinking about it.

After an MRI and oncology visit last week, a new round of treatment is imminent. At the moment it looks like I’ll be doing Temodar again. I’m okay with that, though I’m a little worried because it landed me in the ER a couple of years ago.

Anyway, I’m trying not to let my anxiety get to me too much, but it’s difficult to do when so much is out of my hands.

I am behind on stuff, but just know it’s not because this is how I want it to be. Zentangle videos and Who You Gonna Believe chapters just require a few more neurons than are currently available.

I will write more when I get some things sorted out (and when it’s clear my husband will be getting the meds his doctor prescribed and I can stop worrying about that too).

The plan is for me to start chemo in about 4 weeks. We’ll see if it actually happens like that, but that’s the plan for now.

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