Next Stop: Infectious Disease

Next Stop: Infectious Disease

Talked to a nurse at the cancer center yesterday, and she told me to expect a call to schedule an appointment with an infectious disease specialist, because my oncologist was referring me to one. This is the next stop on the diagnostic itinerary following the colossally unhelpful excisional biopsy.

It’s strange to say this, but I feel relieved. I genuinely thought after the surgeon’s follow-up that I’d be on my own trying to figure out what to do next.

I wasn’t thinking I couldn’t get medical help, but that I’d have to figure out who and how to ask and that I wouldn’t be up to the challenge. I am not used to medical competence, even though it’s been years since the tumor diagnosis trauma.

So, no appointment yet. But soon-ish.

I did feel well enough yesterday to move my next primary care appointment to April. It was scheduled for Tuesday, but I just can’t juggle all the things. I still have to work out Dan’s health insurance situation, and also Monday is my birthday. I didn’t want to spend it worrying about the next day’s doctor appointment. Because I absolutely would.

Besides, spreading the appointments out gives me longer between bills. Right now I owe about $500. But I am anticipating bills from the anesthesiologist, the surgeon, and the hospital for the biopsy. So far only the lab has billed me, and it was only $125.06. (I say “only” because it’s exponentially more expensive to have a lab look at brain tumor cells—ask me how I know.)

If you’d like to help me out, there are non-money ways to do so listed here. Or you can use the links below.

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Correction: It’s $125.06 for the pre-biopsy consult, $57.87 for the labs, and $350.00 left on the outstanding cancer center/oncology stuff. Sometimes it feels like Medicare doesn’t cover enough. (Because it doesn’t.)

For Peace

For Peace

If you haven’t heard of Aaron Bushnell by now, please know that even the blurred video is disturbing. Google with caution.

I’m having a hard time reconciling US political rhetoric about the preciousness of life with the willingness of some to dismiss what’s happening in Gaza. 

And by “hard time,” I mean I can’t contort my brain—which is exceptionally good at rationalizing when it wants to be—into imagining a scenario where a single, non-fascist human being can hold both thoughts at the same time without necessarily imploding.

Yeah, I witness cognitive dissonance all the time. But living in a world where a group of overlapping people can condone the genocide of a people’s children while also giving preference to embryos, calling some children filth, and trying desperately to deny other kids food?

What strikes me about Airman Aaron Bushnell is the singular sense of purpose he had, a desire for the peace and freedom of the people he saw being oppressed.

But even NPR reported yesterday a bizarre recounting of the haunting news, suggesting they couldn’t be sure what Bushnell was on about, exactly.

NPR reported Sunday: “The Israeli embassy in DC said none of its staff were injured.”  And “The Metropolitan Police department has since declared [Bushnell’s] vehicle of any suspicious activity.”

The article has been updated since I first read it, but I still don’t understand what they’re hedging for without putting on some very cynically filtered shades. They added, “As of Monday morning, NPR was not able to independently verify the man’s motives.”

What?

There are Bushnell’s statements, social media posts. Graphic video that he streamed to Twitch.

Particularly harrowing and authenticating is how a cop pointed a gun at Bushnell while an EMT yelled that he needed more fire extinguishers, not guns.

The entirety of the internet knew exactly what happened within minutes.

I don’t have well composed thoughts about self-immolation as a form of protest and frankly my mind might not even be capable. But a Facebook post I saw attributed to the airman reiterates a common refrain:

“Many of us like to ask ourselves, ‘What would I do if I was alive during slavery? Or the Jim Crow South? Or apartheid? What would I do if my country was committing genocide?’ The answer is, you’re doing it. Right now.”

I am sorry Aaron Bushnell won’t get to see the peace he sacrificed himself for.

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.

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.

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.

Happy Valentine’s Day, I Guess

Happy Valentine’s Day, I Guess

Happy Valentine’s Day to all who buy into this commercial holiday that might have origins in animal cruelty and domestic violence.

I was reluctant to share this Zentangle video of mine after being punished by the government for making enough money for us to stay alive, but screw it. If I make or lose an extra $5 this month, it’s not like it will change anything. 

Anyway, watch this if you or your kid are making a card this year and want ideas:

I, personally, like to enjoy this holiday by eating non-holiday-specific, non-heart-shaped chocolate and buying a Valentine’s Day card for Dan from a self-employed artist. You know, sticking it to big VD. But this year, I got him a breakfast burrito. Because SSDI paid out at midnight, and that’s the best I could do on short notice.

Not that he wasn’t delighted with his SuperSonic Breakfast Burrito. There are jalapenos.

The weather is warmer today, which explains why I hurt so freaking much and couldn’t sleep last night. Any weather change is bad for pain and inflammation while it’s happening. I’ve been told, however, this sunny stuff might hang around (meaning I might actually have enough time to acclimate) until the weekend. Around these parts, that’s practically an eon.

I’m also delighted to be able to tell you that my colon has entirely reversed course since the last time I discussed such unpleasantries. Ain’t IBS grand?

I’m a week away from my oncology appointment, where I am still anticipating a giant shoulder shrug from my doctor regarding the lymph node stuff. Just managing my expectations. Someone else can cross their fingers that there’s an answer until then. I’m just not in the mood.

That’s about it. Enjoy your Wednesday.

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.

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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Biopsy and Other Updates

Biopsy and Other Updates

All I’ve got are some random updates about the biopsy and stuff.

I’m LegXercise-ing today, but for a very short time. I have this instinctive tendency to curl up in the fetal position all the time due to anxiety, and now that I have a wound, it really takes willpower to open up physically. Plus it’s just good practice to keep stuff circulating.

I have this thing where I must try limited edition Oreos, and Dan got me these Space Dunk things. When I first heard about them, I was like “yuck.” But you know, I tried them for science (and because life is not terribly exciting right now). I’m a huge fan of the Pop Rocks rattling around in my head.

I finally pooped. Please clap. I had to stop all pain meds, so I’ve traded off one thing for another, but that’s the easiest way I can explain just how awful yesterday was for me.

The first test result has come back on my lymph node biopsy: nothing grew in the petri dish, but I have an excessive amount of red and white blood cells. So basically? No new information yet.

It’s Taco Tuesday. Celebrate accordingly.

Waterproof skin protection is cheaper if you type “tattoo” in the search bar. (They’ll nail you if try to buy it as a medical supply.) Bastards.

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