Blog Therapy

Blog Therapy

If you don’t feel emotions physically, today’s blog therapy session isn’t going to make a lick of sense. However, you might find the Threads quote useful. Don’t leave without checking first.

A few days ago on Substack, my tumor twin Rudy Fischmann wrote about a post he’d seen on Threads. He explained how it kinda blew his mind. And honestly, the longer I’ve let it simmer, the guiltier I feel about getting therapy for free. Who is this therapist? Do they even know cancer patients are out here having life-altering epiphanies?

Here’s the image Rudy, of Brain Cancer Diaries fame, shared:

I’m sure that nugget won’t affect everyone so profoundly, but I’ve been trying for twenty years to be okay with negative emotions and for twenty years feeling like I never quite get it right. To hear that I’m actually a pro at trauma now and need to relearn how to handle and make space for joy and happiness? I mean, of course! But also, holy shit.

Something clicked so easily when I read Rudy’s Substack that I felt like a fool for not getting it earlier.

Following the instruction of some mindfulness practices from Tara Brach, I decided to be more curious about how I do joy the last couple of days. Where do I physically feel joy, for example? Not surprisingly, I couldn’t identify the spot.

Sometimes gravel roads need to be paved. And sometimes overgrown trees need to be cleared. Know what I mean?

I could easily tell you that anger lives in my neck and jaw. That grief resides behind my sternum. That gut-wrenching fear and anxiety (no surprise here) linger in my colon. But joy? No fucking clue where it fit.

I needed to know where joy and happiness were physically felt. The problem was that I was and am broken and can’t just manufacture good feelings whenever I want. Luckily, I wrote a whole thread on social media yesterday about ice cream and unwittingly tripped over some very good feels and nosedived into my happy place.

By the way, I don’t know who needs to hear this, but don’t ever feel ashamed for downing a pint of Talenti gelato in one sitting. You hear me? Three servings my ass.

Anyway, where was I?

So. A few people shared their love of ice cream and happy memories too, and suddenly I was all, “Dude! Joy! There it is!” Turns out I feel joy in the same part of my chest where I feel grief and loss.

Note to self: the love doesn’t have to go anywhere. It can stay put.

But no wonder there wasn’t much room for joy in there. What with the passing of my dad and my dog Boomer in the last few years. (They get space there still, but it could be better organized for sure. Might need to defrag the hard drive.) There’s also grief over brain cancer and the progressive loss of my abilities, which exceedingly also feels like a loss of self. (I have tried rearranging that space. So far all I’ve learned is that I suck at interior design.)

At least I know where joy goes now and that I still feel it. It’ll be hard, but I can work with that.

The distance between “that’s too hard” and “that’s hopeless” is vast. Hard is right there, but kind of awkward to grasp. Hopeless is a big brother palming your head at arms length while you take flailing swings.

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.

This post contains affiliate links.

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?

Don’t Protect Yourself

Don’t Protect Yourself

It’s pretty basic, but it felt like an epiphany Saturday night: Don’t protect yourself.

Those were the words spoken by Megan, a yoga instructor on YouTube. She meant for us all to relax our muscles and lean into the ball for a little myofascial release, which I couldn’t do—at least not yet—because it required lying supine on the floor.

(I might be able to get there, but I am too weak to get myself up and too unimaginative to figure out what Dan’s help could even look like in that situation.)

But for me there was a psychological element to the yoga lady’s instruction too. Closely related to my anxiety. Stop anticipating pain. Stop bracing for a fall every time you stand up. Stop sleeping in the fetal position. Stop overexplaining.

STOP PROTECTING YOURSELF.

Or, framed more positively: Notice what’s acceptable. Let the room pretend to spin. Trust the mattress to hold you. Ask for what you need without apology.

LIVE.

I learned this philosophy before, this “don’t protect yourself.” I will learn it again.

I’m not being too hard on myself or even admonishing myself a little. I’m recognizimg that I learned knew ways of dealing with adversities, mostly to survive some yucky stuff. They only served me for a little while but became habits anyway. Now they are things I need to undo.

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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Emotional Switches

Emotional Switches

I let myself be sad today. Which is a breakthrough of sorts. Over the years, I have flipped some emotional switches to try and stem feelings of fear and anxiety and anger. 

I know. Danger, Will Robinson.

Well, it backfired horribly, as any outsider might likely have guessed. Instead of short-circuiting the feelings I didn’t want to have, I amplified them. I don’t know how it works, exactly, but a professional could probably explain.

Anyway, not only was I still feeling scared and anxious and mad, but that was *all* I was feeling. All the time. Then I was down on myself for failing to be sufficiently happy about happy things, and that made the bad things badder too.

I knew something was wrong—even if I couldn’t put my cursor on it—when my dad and then my dog died. The grief, which I was accustomed to leaning into with past loss, didn’t seem as hard to process. It was there but not as intense as I would have reasonably expected.

It was more surreal than it was painful. 

(Kind of like when the doctor told me I had brain cancer and instead of feeling horrified, I felt vindicated. I laughed and made a joke about my dismissive doctors from my wheelchair. Justified, but, you know, not quite what 30-year-old me would have expected from her older, wiser self getting such news.)

Back to the grief though. There’s a tendency in medicine for the main diagnosis to be The Thing Which Influences All Other Things. Once upon a time that thing was fibromyalgia. Now it’s brain cancer. And because brain tumors can cause mood changes, I thought for a while that all the pent up anxiety and mounting anger was normal for someone who’d done some chemo and had some brain cells irradiated. 

And maybe it was. For a while. But long-term it stopped up my grief passage* among other things.

I know this because my mom mentioned she sold something of my dad’s this week, and I felt physically hurt in that place between my sternum and my spine. Of course my lizard brain wondered why she’d hurt me like that.

There was a giant ball of sadness in there, and I wanted it out. Posthaste.

But I have been working on myself, and I paused and thought, “Hey, this is a good time to explore the sadness instead of punching it down.”

When I held that loaf of pain** and turned it over in my hands, I realized that it was not fresh. The hunk of sadness was stale and crusty and hard. I realized I was sad because I missed my dad, not because my mom had sold a thing.

And, the point is this: in this moment I’m okay with not being okay.

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*I don’t know. What would you call it then?

**This is a brilliant metaphor if you speak French.

Operating Room Day is Nigh

Operating Room Day is Nigh

Friday is Operating Room day. And this evening I’m a lovely mix of anxious, scared, and desperate. So I’m just going to stream-of-consciousness my thoughts.

They want me to bathe with Hibiclens the night before and the morning of the excision to avoid infection. Tonight I’m barely moving, so is that even possible?

I have to be at the hospital at 8:00 am Friday. Is that even possible? What if I can’t sleep again?

What do I wear? What clothes will I be able to manage?

Where is the doctor going to harvest the lymph node from?

Are they really doing general anesthesia? The coordinating nurse seemed to think so. Will I get a break from pain?

Speaking of pain, is it really not going to be that bad? Or is the doctor just bullshitting me?

What about the bathroom? Anxiety makes everything worse.

What if no one wants to take care of me after? What if I can’t get in the car?

What if the results don’t show anything?

What if they do?

What should I eat tomorrow? I need to have a couple of bananas there are a lot and they might get too ripe.

I don’t want to eat anything that will hurt me. But I also can’t make anything.

Should I get more weed?

I wish I had a dog for emotional support, but I’m not supposed to let pets sleep in the human bed the night before anyway. Good thing my cats are jerks. Makes that easier.

Please do something useful, frontal cortex.

Why is this bed so uncomfortable? Why does every pillow feel like a rock? Will I ever feel comfortable again? Would I freak out if I wasn’t in pain?

How am I going to pay for this? I’m still mad that RIP Medical Debt asked me how I felt about impending medical bills and when I moved the slider all the way to “overwhelmed” it said, “Sorry, we can’t help you.”

We could have better healthcare and better outcomes if we didn’t do this to people.

I want a glass of chocolate milk. Will that be a problem Friday morning? Or tomorrow when I need to do stuff?

I need to hydrate now, but I am tired of getting up all the time.

No food or drink after midnight tomorrow. Remember that.

I need clean bedding after my shower tomorrow.

It’s going to be 62° F tomorrow. That’s nice, but climate change?

Here Comes the Sun

Here Comes the Sun

I had a dream last night that I was home from Friday’s lymph node excision and was feeling so good from the anesthesia I forgot I was supposed to hurt and didn’t know if the doctor had opted to take one from my armpit or groin.

Hahaha. As if. But it sure beats a nightmare!

The people who help us clean are coming today. (They come every two weeks.) I will try not to let my anxiety get the best of me during the hour or so they are here. (I frequently worry that I’ll need the toilet when the floors are wet from being mopped and that I’ll slip.)

I can go much longer without needing a break, but anxiety is not rational. In case you were wondering.

I feel a huge sense of relief when they are done cleaning. And we always get lunch delivered after so we don’t immediately dirty up the kitchen. Every other Monday things are kind of nice. They even make my bed, which feels like a treat.

This just in: cleaning is happening tomorrow instead of today. It feels like when a meeting would be postponed at work. Nothing really changes. At best you’re delaying the inevitable, but somehow it’s a relief. Not because the cleaning is a problem, but because I tend to stress about the tidying before so they can clean.

It’s been a week since there’s been sunshine, but I’m told by my weather app that around noon today I will be singing “Here Comes the Sun” like George Harrison. I can’t freaking wait. 

Thursday and Friday should be decent and above 50° F. That’d be nice. I need some less hurty days like Trump needs a campaign contribution. Plus Friday is the big day, and it’s just easier to do the medical stuff when the sun is out.

Mom and I have been using the LegXercise thingy a few times a day. I tried to set it up on my Rollator today to see if I could use it to work some kinks out of my neck, shoulders, and arms. That’s a no. I haven’t totally given up on the idea, but it’s definitely not made for that kind of setup.

It’s 10:37, and there is evidence of the sun. I’m out. Time to bask.

It’s Still There

It’s Still There

One of the things I’ve heard over the years and have been reminded of recently during guided meditation is that sometimes the sun is obscured by clouds and though I can’t see it, I can find comfort in knowing it’s still there.

Well, it’s been raining here for days, and I’m starting to have my doubts the sun is real.

Just kidding. I know it’s still there, but I’ve gotta pop some Vitamin D3 anyway.

I’m approaching the seventh anniversary of my brain cancer diagnosis, which, as you might imagine, has me feeling some ways. I’ve been thinking a lot about my road to diagnosis, which led me to revisit this post about how to get your doctor to listen.

Hey, I just realized something: like the sun, my brain tumor is still there.

I re-read that post I wrote for the first time in a while and didn’t find it a trigger for my anxiety. Maybe that means the meditation is helping. I say that because once upon a time just remembering that rheumatologist’s name would make me want to key the word “asshole” into his car.

Growth.

Anyway, one week until my excisional lymph node biopsy. I only have $600 in outstanding bills so far. This round of undiagnosed whatever is a lot more affordable than brain surgery. 

I still can’t pay for it on SSDI, but if I make it another 7 years, whatever collection agency buys the debt might give up.

America. Am I right?

Ultimate Guide: Helping a Loved One with Brain Cancer

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Life at The Compound

Life at The Compound

We finally had our Christmas dinner this week. That’s how craptastic the last few weeks have been for us here at The Compound.*

All of us have been waylaid by various icks, and though none of us feel as good as we’d like, we were at least able to yank the Christmas ham out of the freezer.

I’ve started doing some somatic yoga. I fell out of bed (bed!) after taking half (half!) a Xanax and bruised my rib. Something has got to give. Everything medicinal that helps my anxiety exaggerates my muscle weakness and fatigue. I even stopped taking melatonin to help me sleep.

That surgical biopsy on February 2 can’t get here fast enough. I’m trying to be nice to my broken body, but it’s being an unreasonable asshole. 

The jerk!

Oh yeah, the yoga. So, depending on the delivery, somatic yoga instructors can be kind of like physical therapists. They can also be full of horseshit. The part that’s good for me about it is the part where you can do it from a chair or bed. I’m focusing on my neck and shoulders.

Though I don’t have any formal diagnosis, I’ve got some kind of frozen shoulder or compartment syndrome situation going on. It’s helping some, and I will keep doing anything that relieves even a fraction of a percent of my pain 

You know what? Not that anyone would say this to my face, but just so I remind myself: anyone who says I’ve given up is a damn liar.

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* Multi-generational housing going on up in here. Mom, Dan, me, and two cats. I don’t know what else to call it.

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