Too Tired for Hope

Too Tired for Hope

I didn’t sleep well last night. Yes, again. I was overthinking the whole lupus-rheumatology thing, even though I promised myself I wouldn’t. So it’s back to moving the compulsive thoughts to the frontal cortex. I’m not feeling anxious, really. Just uselessly spinning the cogs, because I can’t do anything else.

On one hand, I’m tired of wondering what’s wrong, bitter about needing to. And on the other hand, I can barely use a fork because it’s too heavy, and wouldn’t it be nice to know why? Maybe even treat it?

I vacillate between letting myself hope for something better and believing the only thing I can trust is that medical pursuits are colossal wastes of time for me. All this time I should be living while the tumor isn’t growing, and instead I’m stuck in bed. Saving all my energy for getting to the toilet in time.

It’s depressing. And not just a little bit.

I made a document on my phone of all the symptoms I can think of, trying not to be dismissive of anything. If it’s caused by the brain tumor or a long-term side effect of chemo, I need to let the doctors say so. Maybe I’m ignoring something telling, writing it off as insignificant because I don’t know what’s what anymore.

The positive ANA test does point to something. Lupus or Sjogren’s Syndrome or Myasthenia Gravis. But I considered all these things before, years ago. And what showed up was a brain tumor.

When I first met my primary doctor here, she asked me if there was “anything else” after we went over my diagnoses. “Not that that isn’t quite enough,” she added. We laughed, because what else are you going to do?

I’m too tired for hope today. Someone else can do it instead.

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4 New Appointments

4 New Appointments

I started the day with one appointment and ended the day with four new appointments between now and early July.

My oncologist asked if there was any particular reason I didn’t do my infectious disease and rheumatology appointments. I explained that I was too tired, there were too many things going on, and I needed a break.

He understood but encouraged me to see the rheumatologist because of my positive speckled ANA results, and then he mentioned some soft tissue shenanigans and wondered about lupus.

Man, I am not Googling that shit again.

I asked the doctor if there was any rheumatologist he could refer me to in Illinois. I knew the answer. Dan’s been trying to get one for his psoriatic arthritis for a hot minute without luck. But I had to verify.

(For those who haven’t heard: if you’re pregnant in Missouri you can’t get a divorce even if your spouse is abusive. And that’s not even the half of it. Missouri is bass ackwards, and I hate the idea of my money funding that fuckery.)

“Should I send the referral? Are you OK with seeing one in Missouri?”

He held a finger over the mouse, waiting for my answer before he clicked.

“I guess,” I said. “I don’t really want to, but I guess I need to.”

So it’s, MRI, CT, rheumatology and oncology in the next 7 weeks. I’m not sure how that sounds to the able-bodied. But to me it sounds like pure hell. Heat, car rides, labs, tests, insurance, doctors. Ugh.

How to Cope with Scanxiety: A Brain Cancer Survivor’s POV

How to Cope with Scanxiety: A Brain Cancer Survivor’s POV

Living with cancer is hard, but anxiety around routine scans compounds feelings of fear and worry. Scanxiety is the angst you feel when it’s time for another medical scan. I know it well. Too well. Here’s how I cope.

Meditation

If you’re new to meditation, I recommend a guided practice like this podcast episode from Tara Brach. Meditation brings you into the present. While your brain is focused on the here and now, it can’t be distracted by life’s “what ifs” and spend too much time imagining what could go wrong.

Exercise 

Take your dog for a walk, play a sport, or film a TikTok dance video. It matters less how you move and more that you move. Movement boosts endorphins and distracts you from your fixation on those MRI or PET scan results.

Medication

While being anxious over the results of a scan is a normal human emotion, It’s not one most of us enjoy. In fact, it can complicate an existing physical illness. And sometimes medication is the best way to deal with it. There’s no shame in getting help where you can find it.

Sleep Aids

Taking supplements like melatonin to help you sleep can prevent insomnia from making your scanxiety worse. Talk to your doctor to see whether starting a sleep regimen that includes melatonin might be helpful for you.

Medical Marijuana

While getting high can certainly be a fun way to take your mind off your worries, you can also microdose medical marijuana to keep calm. Take it before your exam and while you wait for your scan results. Make edibles with cannabutter or try vape for more immediate relief.

Prescriptions

Anti-anxiety medications like alprazolam can be very effective, and in the U.S. often come with the added benefit of being covered by insurance. Talk to your primary care physician or oncologist about your possibilities.

Hobbies

Reducing anxiety is about giving your brain something else to focus on. Something you enjoy. Here are a few ideas if you’re looking for something calming to do:

Zentangle

Zentangle is a form of meditative drawing that can reduce your symptoms. It is increasingly popular among cancer patients. Learn more about it here.

Baking

Many people report that baking for themselves or others is a form of therapy. If you have the energy for it, give it a try. Put scanxiety on the back burner.

Birding

Birding can get you in nature which reduces stress by lowering blood pressure and stress hormones. But it can help even if you can’t get outside. Try a bird feeder with a camera or downloading the Merlin app and identifying bird songs through an open window.

Gardening

If you enjoy getting your hands dirty, gardening is a great way to reduce anxiety. It’s rewarding to see plants grow and flowers bloom and know that you had a part in making something beautiful happen. It’s also satisfying to grow your own vegetables and cook. Planning your garden in the off season can also relieve stress.

Gaming

If you prefer to—or need to—stay indoors, video games provide a distraction from worry too. We have a tendency to view things negatively when they are actually quite helpful, and video gaming is one of those things thatbis too easily criticized. Whether you like Fallout 4 or Animal Crossing, play what brings you joy.

Small Comforts

Sip tea while reading a cozy mystery under a weighted blanket. Maybe play soothing rain sounds on your noise machine. Watch your favorite TV show. Whatever comforts you after a long day at the office can also comfort you during a bout of scanxiety. Take care of yourself by recognizing your need for downtime.

Personal Connections

isolation can make anxiety worse, so maintaining social connections is important. Whether you need to talk about your fears or you need a distraction from them, other people can provide the sense of community you need.

Support Groups

Support groups are an opportunity to be with people who get it. In addition to feeling less lonely, isolated or judged, it can be helpful to talk to someone not immediately affected by your illness, because sometimes feeling like a burden is a burden.

Family and Friends

The people who know you best can sometimes make you feel your best. Keep a standing date for game night or movie night or pizza night or whatever it is that you and your people enjoy. During that time scanxiety probably won’t find a seat at the table.

Social Media

If you can’t physically get to a support group meeting, social media can be a lifesaver. From Facebook groups to cancer-related hashtags, empathy and advice are available 24/7 because someone is always listening.

Mundane Chores

Doing the dishes or folding the laundry can give you a sense of accomplishment. The distracrion and hit of dopamine might be just what you need to get out of your own head until your anxiety wanes.

For many, it’s waiting for the results to come in that’s the most difficult. If you’re in that boat, you’re not alone. Don’t be afraid to ask for the help you need.

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Brain Freeze

Brain Freeze

My anxiety is up, so I didn’t blog yesterday. It’s disabling like that. Just completely freezes my brain.

What’s got me sleepless and experiencing brain freeze currently? For starters Dan has a doctor’s appointment today, and I’ve been rolling around various topics related to paying the inevitable bill, finding him a new PCP, and getting his meds.

I have a couple of my own appointments on the horizon. The first is sorting out whether I’m going to the infectious disease doctor or not. 

I cancelled the rheumatologist already. I’m just so tired of these meaningless exertions, and I was having trouble getting someone to take me to Missouri. I mean, I don’t want to be there anyway. The fact that no one else does either just makes it easier to say no.

Then my routine oncology appointment will include scheduling an MRI. How is it time for that crap already?

I’m also concerned about making money from this website. I was replacing some Amazon links with Blick.com links (I need Amazon sometimes, but I don’t want to need it) when my mind was like, “wouldn’t it suck if you got this site making just enough to get you kicked off benefits and not enough to live off of?”

Everything about being disabled is stressful. Everything.

And those anxious thoughts preoccupy my brain so that there’s no juice left for executive function. I can’t shower and fold my clothes, let alone make the words make sense. So yesterday was useless to me.

But blogging today must mean I’m recovering, right?

I’ll do my best to hold on to that. Maybe writing down my anxieties will get me through them. Still operating on the theory that writing it down gets it into my frontal cortex, and from my frontal cortex I can get rid of it.

In cuter news there’s a turtle in the yard this morning. Ain’t he adorable?

Go Gray in May for Brain Tumor Awareness Month

Go Gray in May for Brain Tumor Awareness Month

This year for Brain Tumor Awareness Month, I’m seven years post-diagnosis. It feels like a big deal.

Free brain image in Zentangle style, black and white digital with test "go gray in May" and attribution to emilysuess.com

My Brain Tumor Diagnosis

In February 2017, I was diagnosed with a rare, relatively slow-growing brain tumor. The kind of brain cancer that is overshadowed in the news by stories of politicians with GBM, for example

I believe those stories are important and impactful, but so is mine. So are the stories of all the people whose lives are altered by treatment, bills, and disability and whose names aren’t immediately recognizable.

Every Brain Tumor is Different

Brain tumors can be benign or malignant. They can be in different areas of the brain that affect different processes in the body. For example, seizures are a common symptom of brain tumors, yet I’ve never had one. I am most effected by muscle issues, balance problems, and pain. But there are any number of complications that a patient might report.

Support for Brain Tumor Survivors

Empathy is what I want most. But it’s a very elusive thing, trying to explain to people with actual words what I’m experiencing. I always feel like a failure in the end. There are no words.

But there are specific things people have done for me when my words fail.

The Thing about Early Detection

When it comes to cancer, you hear a lot of well-intentioned people talk about early detection, but that’s an oversimplification for sure. Since pain was and is my key complaint, I didn’t get an MRI when I first sensed something was wrong. what I got was a misdiagnosis and a couple years of Bonus Struggle.

Lacking a dramatic symptom, you might have to push for answers too. I want people who haven’t yet had this fight to try to imagine what it’s like. I want people who are going through it to know I care.

Patient stories matter, and I encourage you to talk about Brain Tumor Awareness Month 2024 with me. If you need free graphics, I shared some here.

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Free Brain Images for Brain Tumor Awareness Month

Free Brain Images for Brain Tumor Awareness Month

Seeing how I already donated some brain tumor cells to researchers back in 2017, there probably isn’t much more I can contribute to Brain Tumor Awareness Month this year than giving you permission to use these copyright free brain images on your website, blog, or social media profiles.

Change them up however you like. You can give attribution if you want, but it’s not necessary. You can also use them anytime—not just in May.

Common Brain Tumor Symptoms

It’s important you know how to recognize the symptoms in yourself and recognize them in others. Symptoms vary by tumor location, but these are the most common:

  • Headaches that are persistent or severe
  • Abnormal gait or awkward coordination that make it difficult to walk
  • Muscle weakness
  • Imbalance
  • Dizziness or vertigo
  • Fatigue
  • Nausea or vomiting
  • Pins and needles or numbness
  • Inability to speak or understand language
  • Confusion
  • Blurred vision
  • Dfficulty speaking or slurred speech
  • Personality or mood changes
  • Seizures

About My Brain Tumor

i was diagnosed with a diffuse astrocytoma on my brain stem in 2017 and have done radiation once, and chemotherapy a few times—both temozolomide and gleostine.

Treatment reduced the size of my tumor, but it’s in a spot that neurosurgeons consider inoperable, and I still live with it. It’s classified as grade II, and is relatively slow-growing. I was initially treated at Barnes-Jewish hospital in St. Louis, and have since received care from fantastic doctors at Carle in Champaign-Urbana, IL and Cancer Care Specialists of Illinois in O’Fallon, IL.

if you use any of these free brain images this May for Brain Tumor Awareness Month and want me to know, leave me a comment and drop a link so I can follow you.

When Things Don’t Go Well: Cancer Edition

When Things Don’t Go Well: Cancer Edition

Tried recording a little bit of voiceover for a brain tumor friend’s Rock Opera charity thingy, and sometimes these things don’t go well. At least not lying down. I will try again later when I’m sitting up. Otherwise the recording is just going to need a lot of editing.

Monday evening didn’t go well either. There was Taco Bell and a giant stomach bloat, and then a forced shower I wasn’t planning on. 

I think it’s because the cleaners were late? See, we usually order food when they’re done, but they didn’t leave until 4:30, and I usually order by 2:00. That’s a little late for lunch, but it’s usually fine.

However.

When I don’t eat for a long time, and then eat a lot quickly because I am super hungry? 

BOOM.

Just keeping it real. I know how everyone thinks having brain cancer is so glamorous. 

While I whined about the unbudgeted energy I had to use up showering, I lamented that I broke my own 24-hour rule.

The rule is: you can’t make a mess here for 24 hours after the cleaners come. That way I get to enjoy a tidy home once every two weeks. It’s a rule that has historically applied to the pets, but it has since expanded to be the reason we don’t cook here every other Monday.

Well, we have to DoorDash way more frequently than that, but you know what I mean.

One thing I need to do now that I have additional insurance is postpone my rheumatology appointment this week. I’m thinking sometime in June now. But I don’t know, we’ll just see what’s available after coverage starts and what I think I can reasonably expect of myself. June is supposed to be routine MRI month too. And that’s also a whole-ass thing.

The inner dialogue I have regarding the rheumatologist sitch isn’t going well right now either. There’s a whole lot of me saying to myself: just cancel it. It’s going to be a huge waste of time.

That’s the fun of chronic illness. Wanting to be better, but getting nothing but extremely expensive and increasingly exhausting non-answers.

So, yeah. That’s what a blog post looks like when things don’t go well. A lot.

Positive Speckled ANA

Positive Speckled ANA

The results of the antinuclear antibody (ANA) test are in! They are: positive, speckled, high and with a ratio of 1:640.

Now, to temper my enthusiasm a little, I should probably remind myself there is an entire laundry list of potential diagnoses to consider—from drug induced lupus (I do suspect temozolomide, one of my chemos, screwed me up) to hepatitis to Sjogrens and even…fibromyalgia.

[Blinks annoyedly into camera.]

So I don’t have answers, per se, but I do have reason to believe we’re finally getting somewhere. After years. Again.

For comparison, in 2015’s ANA test, I only had a ratio of 1:160. Then in 2017, while hospitalized for the brain tumor and on the mother-of-all steroids, I tested negative. The change is noticeable and significant. (Thank God for MyChart’s search function!)

It’s not clear to me yet what’s going on, but fuck if I don’t feel a little bit hopeful right now. Like maybe I’ll be able to take a shower again without wondering if I’m living in my own tiny post-apocalyptic hell.

Dan is cautious of me getting too convinced of anything too soon, and honestly that’s kind of a buzzkill. But I’m not unreasonable. I get it. 

It doesn’t stop me from saying I have every Sjogrens symptom known to man, but I get it.

I just want so desperately to have a reason to hope I can spend some time not in bed, not miserable, not so tired and weak I have to hobble to the toilet. I’m sick of strategically leaving doors open to conserve energy.

Yes, the batteries are that low.

And if I could just have a steroid, please, instead of worrying it will mask something important—I promise I’ll be good! And not complain about the weight I put back on because everything tastes marvelous again.

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Simon & Garfunkel, 30-ish Years Later

Simon & Garfunkel, 30-ish Years Later

When I was about 10? Maybe? I used to play Where in the World is Carmen San Diego on our family’s IBM. The den’s dark wooden shutters would be closed, and I’d put on headphones and listen to Simon and Garfunkel while tracking down a villain with a punny name, a copy of Fodor’s close by just in case I needed help with a clue.

Those earphones—cans, you might call them—were probably 20 years old. I think Dad got them when he was in the Navy. When I wore them, the painted fabric ear cushions would peel, the black fabric paint tearing off in little pieces and sticking to my sweaty cheeks.

I must’ve looked ridiculous wearing those giant things with the 6-foot-long coil plugged into the 1970-something receiver, sitting on a bookcase with a 6-cd changer, a tape deck, and a reel-to-reel.

I realize only now those were noise cancelling headphones, and I loved them so much because I was alone in my happy place listening to Simon and Garfunkel sing anti-war, anti-The Man poetry with some of the most beautiful harmonies ever recorded.

Dad had a 3-CD set. I want to say it was a collection of all of Simon and Garfunkel’s studio albums, but I could be wrong. What I do remember is the CD case was hunter green and the cover was a booklet with lyrics to everything.

In those days, I thought the whole world had learned something about war and authoritarianism and every adult was a hippie and went to Woodstock. I didn’t know I was naive. That even my own parents were squares, actually. 

I didn’t know that I was the only fourth-grader on the planet who had not only heard S&G’s deepest cuts but could sing them by heart.

Anyway, Dan talked me into buying noise cancelling earbuds from Amazon this week. We needed new filters for the cat bubbler* and they had the earbuds on sale.

I put the earbuds in and played “Sparrow.”

For the first time in 30 years, I heard everything. I thought I couldn’t enjoy music in that way anymore. Not since the brain tumor, but it turns out I just wasn’t listening the way I needed to. I teared up.

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*”Bubbler” is what folks from Milwaukee call a drinking fountain. I guess now I do too.

Medicaid Cuts

Medicaid Cuts

I’m going to preface this post on Medicaid cuts by saying this: if you don’t get it, that’s not my problem. I don’t have the energy to help you understand why this matters on a larger, political scale. If you offer me worthless advice in the comments, I will reply with merciless snark.

Dan was kicked off Medicaid after 6 years, thanks to recent Medicaid cuts. His current health insurance ends at the end of the month. All because I make $200 more per month than is allowed under new rules. 

The rules don’t care that the annual price of one of his prescriptions is more than I make the whole year—far exceeding the “extra” $2,400 a year the metric says I make now. Or that the Patreon and YouTube income I report are not guaranteed. Or that I can’t afford my medical bills even with those supplemental sources. Or that Dan gets paid nothing to be my rock while he deals with his own chronic pain.

The rules do, however, mandate that we can’t save money for when something like this inevitably happens.

If my brain cancer, medical anxiety, disability, and mystery illness weren’t enough, now I get to worry AGAIN about the health care of my emotional support human. The man who literally keeps me fed and watered and scrapes me up off the floor when I fall out of bed.

So, yeah. I’m honking pissed again.

Making anyone deal with these things when there are other options is inhumane. Making the sick and disabled navigate this hellscape—repeatedly—is supervillain levels of evil. Even convicted sadistic fuckwads would think twice about doing this to other humans.

For me to get any kind of better or merely acclimate to symptoms of my relatively new and undiagnosed health problems, I require stability. 

This ain’t fucking it.

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