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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Best Methods for Making Cannabutter

Best Methods for Making Cannabutter

Cannabutter, the cornerstone for cannabis-infused edibles, is the key ingredient in many culinary delights. Whether you’re a seasoned cannabis connoisseur or a cancer patient like me, mastering the art of making cannabutter can be helpful.

I’ll cover my two favorite methods for making cannabutter: stove top and slow cooker.

Small slow cooker with reusable coffee filter lifted over it. The filter is dripping cannabutter back into the crockpot
Making cannabutter in mini slow cooker.

Choose Quality Ingredients

Like anything you cook, bake, or steep, quality matters to your tastebuds. Select high-quality cannabis flower with the flavor profile and ratio of THC to CBD you prefer. However, if you’re on a budget, shake will always get you where you’re going.

I also recommend using unsalted butter so you’ll have more control over taste and sodium content. Not everyone has perfect blood pressure.

Decarboxylation

Before infusing cannabis, it must undergo decarboxylation. This process, done simply by heating your cannabis, activates cannabinoids like THC and CBD.

Spread evenly ground cannabis on a parchment-lined baking sheet and bake it in the oven at 250°F (120°C) for about 30 minutes.

If you don’t decarb cannabis first, you will probably be disappointed with your cannabutter.

Stove top infusing can be done on any oven range.

Stovetop Method

  • Place the butter and decarboxylated cannabis in a pot over low heat (gas or electric).
  • Cook on low for 3 hours, stirring occasionally.
  • Strain the mixture through a mesh strainer, reusable coffee basket filter or cheesecloth.
  • Cool and store the cannabutter in an airtight container in the refrigerator or freezer.

Slow Cooker Method

  • Melt the butter on low heat.
  • Steep decarbed cannabis in butter on low for 3 hours using a filter, if you prefer, for easy straining.
  • Cool and store cannabutter in an airtight container in the refrigerator or freezer.
Top Pick
Elite Gourmet small electric Slow Cooker with Ceramic pot

Elite Gourmet Slow Cooker

$14.99

Ceramic Pot, Adjustable Temp, Entrees, Sauces, Stews & Dips, Dishwasher Safe Glass Lid & Crock, 1.5 Quart, Stainless Steel

Dosage Control

Start with a small amount of cannabis, an ounce or so, and gradually increase the dosage as needed. If you’re like me, you’ll want to take notes, as everyone reacts differently to different potencies.

Keep in mind that the potency of homemade edibles isn’t a hard science. You may need to tweak how much cannabis you use depending on the strain, age, and type of cannabis you choose.

Storage and Usage

Store your cannabutter in an airtight container in the refrigerator for up to two weeks or in the freezer for longer-term storage.

Don’t forget to label the container clearly to avoid confusion. If you’re using a clear container for storage, you’ll notice it’s distinctly green color. (It looks like very smooth guacamole when I make it the way I like.)

How to make cannabutter: comparing cooled cannabutter to guacamole in the refrigerator. Both are the same shade of green
After steeping, cannabutter will take a greenish hue.

When using cannabutter in recipes, you may need to adjust your recipe according to portion size and desired effects.

Experiment and Bon Appetit!

Making cannabutter is a little bit science and a little bit art. Don’t be afraid to experiment with different strains, infusion methods, and recipes to find what works best for you. It’s perfect for baking brownies, simmering sauces, or just spreading it on a toasted English muffin.

These are the best methods I’ve found for making cannabutter. Which is your favorite?

This post contains affiliate links.

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.

Maintenance Light

Maintenance Light

I was supposed to have my first appointment with the new rheumatologist tomorrow, but the maintenance light came on in the Corolla, and it needs to be taken in.

It’s one of those 100,000-mile deals where we knew the car was going to start needing money and attention, but we were hoping the Universe would give us a break for a few more months.

That’s not all that’s going on, either. Dan’s rheumatologist is leaving—he got the letter yesterday. I still need to sort out his insurance situation since Medicaid says we make too much money. (That’s laughably absurd.) 

And … wait that might be it?

It’s enough when you’ve got cancer, don’t get me wrong, but I am pretty sure yesterday I was feeling overwhelmed. And this morning it’s actually not that bad.

Catastrophizing is my go-to anxiety builder, and I’m proud for limiting myself to just a few hours of it—without even trying really. I think it helped that I actually slept a few hours last night.

I’ve also noticed that doing a ten-minute bird ID session with the Merlin app is basically a meditation that engrosses me in chirping birds, and I was able to do that again yesterday.

Anyway, I’m not thrilled about having to delay a doctors appointment that might get me some answers, but what’s another couple of weeks when I’ve gone this long?

The time will come and go whether I know what this *makes a circular gesture encompassing entire body* is or not.

OK. I’m off to determine whether a cat peed territorially inside the house or I’m having a migraine and my own maintenance light is on. Not sure which scenario would be more fun.

See you later, folks.

Enough

Enough

When I was rolling around “enough” in my mind, the word association thing happened. And I remembered that Jennifer Lopez movie of the same title that my ex-husband didn’t like much. It made him visibly nervous.

Y’all. I’m a pacifist. It’s not funny that violence made “Rodney” uneasy. It’s funny he thought me capable of it. It’s sad he thought I thought he deserved it.

Full disclosure, I did once tell him while he was cheating that I wanted to push him down the stairs. But that threat was more real in his mind than mine. And when I realized he was clearly taking it all more seriously than intended, it seemed like a good time for me to choose my words more carefully.

Anyway, what I’m really here to say is that yesterday I looked at the screenshot of my hospital receipt several times, and I realized almost immediately that having enough money to pay medical bills is more than a relief; it’s empowering.

Part of my struggle with brain cancer isn’t the cancer at all. It’s this bullshit insurance system we have in the States. There’s a part of a person that absorbs the natural consequence of for-profit healthcare: people who don’t have enough money feel unworthy.

Forget fighting insurance companies for a minute. We fight ourselves because of the messages we internalize from BlueCross and Aetna and Humana.

What do you mean some of us can’t have life-affirming treatment because it doesn’t make some rich person richer? Sure, we can formally appeal the premise, but we have to do so inadequately treated. 

Man, that is so fucked up. 

Like J Lo, I think I’ve had enough. So as an act of resistance, I hope you have enough of whatever it is you need.

What I Need

What I Need

Here’s what I find frustrating about my predicament: if I over-explain people get bored and irritated and wish I’d just say what I need. If I just say what I need, I’m too bossy and not appreciative enough.

In the absence of other people with brain tumors and TBIs, I find common ground with people who have ADHD or autism. My brain can’t (not won’t; can NOT) process two things at once. And since pain and anxiety are always happening, I get extremely exhausted and extremely frustrated extremely fast.

I was trying to get three things from the fridge for lunch. Oliver was jumping on my rollator, Dan was upset I didn’t find a joke of his funny, and I couldn’t get out of the kitchen because I miscalculated my turn radius. “I can’t do two things at once,” I said for what felt like the hundredth time, “that includes laughing.”

Then I couldn’t get my Rollator—with my lunch and a cat on it—over the threshold between the living room and the bedroom. Dan was saying something behind me (I don’t even know what) and in exasperation, I said “Stop yelling at me!”

Was he actually yelling? No idea. But it felt like knives were being hurled into my ear drums, and my shoulders clenched just a little bit closer to my ears with every unprocessed word that came from behind me.

The door slammed, and Dan’s voice trailed off, “Fine. I won’t talk then.”

I ate my deviled eggs seated on the edge of the bed while muttering, “I don’t need you acting like a five year old.”

From doctors to family to friends, I am acutely aware how I can’t explain myself to normies anymore. It’s stressful and sometimes scary.

No wonder I’m always anxious.

Doctor appointment tomorrow morning—follow-up with the surgeon.

It’s Been One Week

It’s Been One Week

It’s been one week since you looked at me
Cocked your head to the side and said, “I’m angry”

—my excised lymph node, probably

One week ago today was the biopsy. I don’t have any answers yet.

It’s no secret that patience is not a strength of mine, but in this particular case, I’m cutting myself some slack for my deficiency. No one in this situation would be cool with the waiting part. No. One.

But wait I must.

So what else is floating around in my head besides excessive lymph? I’m so glad you asked. I need to start on our taxes, but I don’t feel like it, so…next!

I still owe the Cancer Center of Illinois roughly $500, and the waterfall of bills for the biopsy will probably arrive next month. Good times.

It’s supposed to reach 70°F today, according to my weather app. But even that’s a mixed bag. On the one hand: ahhhhh. On the other: climate anxiety. And then snow on Monday, but I’m going to try not to think about that.

The other day I listened to an episode of It’s Okay That You’re Not Okay. (A podcast mentioned by a friend on social media.) The episode was about chronic illness, and it resonated with me in ways that soothed the part of me that needs to heal from the medical gaslighting years ago.

To be clear, I don’t have problems with current doctors. It’s just that the damage the old ones did was life-altering in a very lingering way. What I needed to hear was, “I don’t know how to fix this, but I believe you” and what I got instead was “It can’t be that I don’t know everything, so you must be lying.”

Not to mention all the Lincoln Financial Group drama.

Anyway, feeling seen, as the kids say, made my muscle tension ease some. That in turn lessened some of my pain and confirmed my motive for writing about what literally hurts me: I blog this stuff for me and so someone else might find comfort too.

Oh yeah, the regular walker arrived, and I am not good at it. I think being pain-free from the anesthesia at the hospital is what made it easier. I’m always coming back to the damn pain. Wanting to be rid of it (the part I can get rid of) makes it harder to let go of it. Life is so unfair.

That’s not me whining; that’s me stating a goddamned fact.

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Pathology Report is Back

Pathology Report is Back

The pathology report for my lymph node biopsy came back benign. And although I didn’t want more cancer, I do want to know what the hell is wrong. As things stand, I feel like I underwent another invasively complicated procedure for nothing.

I don’t know if anyone who hasn’t been miserably undiagnosed can really understand this odd mix of relief and dread I’m feeling right now.

There’s one more test to run, I think. But I can’t remember anymore what it was. Autoimmune shit? I don’t know, but I’m confident—just knowing my track record—that won’t find anything either. And I don’t know where that leaves me. Miserable? Without answers?

I need someone to swoop in and just take care of this.

My oncologist was reluctant to put me on steroids because it might’ve masked what’s wrong, but maybe he will now? Maybe that could help?

Again, I can sense people will be saying things like, “Yay! It’s not lymphoma.” But none of those people will be thinking about how this is my third biopsy on a third lymph node. About all the extra pain I have. About how I barely have enough energy to sit up.

And how I want to punch them all in the nose.

The only thing left (that I can think of) is to go back to my theory that this is viral. But how do I get that answer? People who say they have viral pneumonia or mono or whatever the hell. How do they know that? I’ve never in my life been told anything more specific than that I have a cold. Where are these miracle doctors who test and diagnose viral stuff?

Long-covid has crossed my mind, but it’s not COVID unless I didn’t know I had it. One of my handful of test results would have to have been a false negative since the pandemic. And I’ve been so careful anyway. Masks. Isolation. Vaccines. Evusheld. Because clearly I can’t handle cooties.

Oh fuckity fuck. It just occurred to me this nothingburger of a biopsy is going to cost me a small fortune.

I dunno. Fuck it.

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