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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