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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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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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.

7 Signs of a Bad Doctor

7 Signs of a Bad Doctor

I’m sharing personal anecdotes with these 7 signs of a bad doctor for a few reasons:

First, I want you to know that if you’ve got a crummy doc, you’re not alone. So many people can relate. (The hashtag #DoctorsAreD*ckheads existed on Twitter for a reason!)

Second, it might help you see warning signs in your own care. Maybe you just don’t like your doctor; maybe your doctor is genuinely terrible.

Remember: doctors, like anyone else, are not good just because they chose a profession of prestige and authority. They still have to be competent at what they do—just like the rest of us.

So what are the 7 signs of a bad doctor?

  1. Your Doctor Doesn’t Listen
  2. Your Doctor Blames You
  3. Your Doctor Makes You Feel Rushed
  4. Your Doctor Doesn’t Ask Clarifying Questions
  5. Your Doctor Takes It Personally When Medications and Treatments Fail
  6. Your Doctor Isn’t Personable
  7. Your Doctor has Bad Patient Reviews

7 Signs of Your Doctor Sucks

1. A Bad Doctor Doesn’t Listen

The worst doctor I ever had—The Rheumatologist from Hell™—would barely make eye contact with me. He was always scribbling something in my chart, unengaged and uttering only the perfunctory mm-hmm. At a time when I felt afraid and unsure, this was definitely not helpful.

I let his board know it, too. (Please report bad doctors whose actions cause you actual harm.)

Was he a terrible diagnostician or just bad at relating to me? Either way, I paid a significant price as a chronic pain patient, and I wonder now how many others did too. It’s a big deal and harmful—sometimes life-threatening—to be ignored. Ask me how I know.

2. A Bad Doctor Blames You

There were only so many times I could be told that diet and exercise were my problem before I realized the doctor was making my problem worse by taking the easy out.

As it turns out, all these years later, I’ve still never read a single article confirming that I wouldn’t have brain cancer if I’d just managed to lose 15 pounds. It’s bullshit, but it was fed to me repeatedly.

Sometimes the doctor’s admonition is what it is—fear of fat. Sometimes the extra weight is a result of disability and immobility. Sometimes food is the only scrap of comfort available precisely because no one will listen.

Me, bloated and fat from the dexamethasone, on the last day of radiation for my brain tumor. I am surrounded by my family.

The why doesn’t change this truth:

A failure to see any other possibility or acknowledge an inability to diagnose your condition in spite of an “unideal” weight is a red flag. No one knows everything, and any doctor who can’t accept their imperfection is doing patients a huge disservice.

3. A Bad Doctor Makes You Feel Rushed

The worst doctors I’ve had made me feel like they had somewhere else—maybe even somewhere better—to be. 

It hasn’t happened to me a lot, mostly because I’ve been waiting so long in uncomfortable chairs that I’m the one who wants out of there, fast. But when it happens, it’s not subtle. It distracts me from outlining my numerous symptoms, which I have a hard time recounting due to health-related anxieties.

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4. A Bad Doctor Doesn’t Ask Clarifying Questions

While I’m relaying my symptoms, I expect my doctor to ask clarifying questions. If I could diagnose myself and knew exactly what was important to share, I would probably just ask for the right tests from the start and save myself a lot of money and a lot of heartache, right?

If I say something like “this hurts” and my doctor wants to know the whens and hows of the pain, I feel much more confident that vital information is being considered. And who doesn’t want a shorter trip to diagnosis because all the facts are being considered, not just the easy ones?

Me and my husband, Dan, celebrating his birthday in Milwaukee, Wisconsin.

5.  A Bad Doctor Takes It Personally When Medications and Treatments Fail

I write a lot about The Rheumatologist from Hell™, but it’s because he so effortlessly did so much emotional damage that I have to work to undo all these years later. Present me wants to scream, “This isn’t about you! Don’t bill me for this crap!”

When Cymbalta (duloxetine) didn’t make me feel better, my old rheumatologist didn’t pivot or refer me to someone he thought might be able to help, he doubled down. He told me I’d hurt more if I didn’t take what he prescribed, and essentially blamed me for non-compliance before I was non-compliant.

6. A Bad Doctor isn’t Personable

Sometimes doctors are emotionally cold and you leave feeling less than human. These are bad doctors, no question about it. 

There is a certain level of detachment that’s completely appropriate, but if you walk away feeling less than or othered, it’s not you. More than anything I want you to know it’s not you.

7. A Bad Doctor has Bad Patient Reviews

A single bad review isn’t necessarily a reason not to see a doctor. We all know a lot of complicated factors determine which offices we end up visiting.

Doctors and patients can have bad days, and patients might be more likely to leave complaints on review sites when that happens.

But if you find a lot of reviews addressing the same problems repeatedly, that’s a sign you’ve got a bad doctor. When I feel like I don’t have a choice but to see a physician with a lot of negative feedback, at least I know what I’m walking into. There’s some solace in that.

Reporting a bad doctor for me is a moral imperative. But it’s equally important to share my good experiences too. It takes me only a few minutes to let other patients know what they can expect.

Pro Tip: for reviews, search for your provider on websites like Healthgrades and Vitals.

Share You Experiences with Bad Doctors in the Comments

Those are my own personal 7 signs of a bad doctor. I’ve probably missed some helpful stuff though. Let us all know what warnings you would add to the list by leaving a comment, and read about my fantastic new primary doctor.

PS: if you’re stuck with a bad doctor and trying to make the best of a bad situation, maybe this article will help: How to Get Your Doctor to Listen

PPS: If you need help relaxing because your doctor is lousy, try making weed butter or learning how to Zentangle! (Wink, wink.)

Fully Funded

Fully Funded

I woke up bright and early this morning and signed on to GoFundMe to share my Go Fund Me campaign link on my social media accounts. And the campaign progress bar was green. And under the bar it said: $1480 of $1480 raised. Fully funded.

No exaggeration, I rubbed my eyes and squinted and said, “what?” (In a good way, of course!)

Just like that a financial burden is lifted. My mind is clear so I can think about what Dan wants me to order for breakfast this morning and formulate a plan for our current Medicaid woes.

The final Go Fund Me contribution was a generous one from someone I don’t know, but the donor let me know who reshared the campaign, and that person was also someone I don’t know.

It’s so nice to know that random people out there care about other people. It’s too easy for my cynicism to take hold these days, and always nice to be reminded that people care—about complete strangers!

Anyway, I just want to say thanks to all those people I don’t know and the people I do know who shared my link to help get my campaign fully funded. Because sharing links to these things is helpful beyond words.

You might also like: How to Make Slow Cooker Cannabutter

My Body is a Wonderland

My Body is a Wonderland

As anticipated, the antinuclear antibody (ANA) test results triggered oncology to refer me to rheumatology. What can I say? Chronic illness. My body is a wonderland.

I’ve been to a rheumatologist before, and that, uh, didn’t go well. So I need to be on the lookout for any signs my anxiety-prone mind is starting to spiral.

I feel hopeful and relaxed now, sure. But they don’t call it trauma because it just goes away and you’re never reminded of it again. It feels weirdly like I’m being vigilant about my tendency toward hyper-vigilance.

Sometimes it do be like that.

The doctor is in St. Louis, which I don’t like for a few reasons. I mean, St. Louis is a fine city, but I wish it were a city in Illinois.

Missouri is bass-ackwards when it comes to the political stuff, which more and more seeks to strangle what choices doctors and patients have. While it might not affect me in this particular situation, it’s the principle. And on principle, I’m pissed.

But this is not a post about that. And anyway, if you don’t already know my politics, you must be new here. (Hi! A few blog clicks should give you all the context you need.)

Back to this present medical mystery and enduring chronic illness. I suppose it doesn’t really matter if I had something rheumatological going on this whole decade, but it’s definitely a thought that’s crossing my mind. Because even the Rheumatologist from Hell™ managed to tell me there was “something autoimmune” going on back in 2014.

Not that he was the least bit curious what that might be.

Ahem. Stay on track, Emily.

So were those autoimmune findings separate from or related to the brain cancer? Getting shingles can trigger some shit, and chemo can screw up immune systems. Plus they intentionally nuked my thyroid 20 years ago. My gallbladder got sassy and now it’s gone. The last PET scan, my liver was like, “Hey, girl! Have a node! Muah!

So if it started with something autoimmune, it wouldn’t be surprising that it’s worse ten years and some-odd cancer treatments later. Right?

As I was saying, my body is a wonderland. Just not in the sexy John Mayer way. It’s more the riddle-wrapped-in-a-mystery-inside-an-enigma-that-results-in-the-atomic-bomb way.

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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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Peak Void-Screaming

Peak Void-Screaming

Oof. Yesterday was something else. It was rainy and cold. My inflammation was up, so my pain was at peak void-screaming levels, and I had an appointment with my oncologist.

He still doesn’t know what to do with my lymph nodes, but while I wait to be seen by an infectious disease specialist, he ordered a bunch of labs. Some of the test results were out of range, but not wildly so. Nothing prompted me to go, “a-ha! So that’s what’s wrong!”

And nothing made a diagnosis obvious to him either, or I imagine a nurse would have called me before results got released to my patient portal.

Dr. Onc (I think that’s what I’ll call him here) asked about my pain. It was exceptionally debilitating yesterday. I explained my theory that when my inflammation increases, I think my degenerative disc stuff pushes on a nerve and sends me into Active Wincing Mode™. I reported a 7 on the pain scale going into that appointment. By the time I was home it was at an 8.75. 

That degenerative disc theory lines up with elevated sedimentation rates reported in my labs and a family history of arthritis, but this fatigue and these lymph nodes. I just don’t know. If it’s possible to discern what symptoms are brain tumor and what are something else, I’m going to need someone to hand me the decoder ring.

I do appreciate my doctor though, and I’ve been trying to focus on that. Yesterday, for example, he acknowledged my pain but said he didn’t think the lymph node stuff was life threatening. Words I didn’t even know I needed to hear. I think my blood pressure went down measurably, though. So when my anxiety peaks, I will try to remember what Dr. Onc said.

Also, the man ordered enough labs that the phlebotomist took seven (!) vials. That’s a decent number, even for a professional patient. A number that gives me confidence he’s trying to help, and one that reaffirms my expectations of modern diagnostic medicine are reasonable. (Being gaslit by doctors will screw you up, kids.)

Oh! Also yesterday I got to wear my IV hoodie for the first time. The phlebotomist complimented me on it, but the nurse taking my BP basically gushed. “Every patient needs one of those! It’s so cool!”

Thanks to my friend Jenn for hooking me up with it for my birthday, because it brightened a pretty miserable day for me. I was cozy, but my elbow crook was still totally accessible. 

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