For the Birds

For the Birds

I had a rough few days, which is why I haven’t been blogging at my usual clip. But I’ll get to all that another day. Maybe.

Instead, let’s talk about why I didn’t post anything yesterday: because the weather was fabulous, and I had better things to do.

On social media, an academic follow from the University of Illinois (I always follow some local people if I can find them, and I used to live in Champaign-Urbana) who is into birds (like PhD-level into birds) shared about birding with the Merlin bird app.

That app is like a real-life Critterpedia. I’m hooked. You can ID birds by photo, but also by audio recording. So I sat in the backyard for 10 minutes, listened to birds chirping, and collected these feathered dinosaurs while making vitamin D.

There were more, actually, but it took me a while to realize I needed to confirm and save my findings, so I identified a species or two that I don’t have saved yet.

Merlin is so good at recognizing songs and calls that I can even do it from bed when the window is open. This is hugely delightful for a woman who spends a lot of time being sick in bed.

There’s a surprising amount of wildlife in Mom’s yard, partly because she has made it into a park and partly because the SIUE campus isn’t far away.

It’s one of those sprawling Midwest state-school campuses. Trees and fields with the odd modern building, as opposed to your more urban settings with buildings and parking garages and the odd, perfectly coiffed tree, where applicable.

It’s not unusual to see lots of animals in Edwardsville. Deer. Turtles. Mountain lions. (Ahem.) Foxes. Snakes.

Bald eagles and skunks too, though Dan’s not got pictures of those to share…yet.

The neighbors have a pond in their backyard, and though I can’t see it from here, I can hear the frogs. Sometimes one shows up to feast on the bugs our patio light attracts.

Nice, innit?

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PS: Our cats, Izzy and Ollie, frequently climb that screen and don’t damage it. Highly recommend!

PPS: There are Eurasian Tree Sparrows in St. Louis.

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.

Oh My God Do I Try

Oh My God Do I Try

We’ve got a grocery delivery coming this morning, and I’m getting Cheerios with veggies blended in. It takes very little to entertain me these days, and trying new food is easy. I mean, eating is something I need to do anyway, right?

I recently announced to social media that I plan to become a candy influencer if I get some energy back. You know, let candy companies send me new stuff for free in exchange for a review. (It would pair well with my other hobbies. Heh.) But maybe I should expand to any food though. Even stuff that doesn’t contain added sugar.

I’ll probably blog about the Cheerios after I have a chance to try them. The store had Blueberry Banana and Strawberry Apple varieties available. So I got one of each.

I finished paying the last of my current medical bills this morning, and I am trying not to think too much about how that round of $1,500 and a couple of invasive procedures got me nowhere.

Wait. That’s not entirely true. It did help me rule stuff out. I need to remind myself of that to keep from getting cranky. But I don’t have any answers yet, and that’s frustrating. Typical, but frustrating.

I have noticed that taking Flonase for my seasonal allergies has reduced some of my inflammation. I guess because it’s a steroid? It’s inconsistent—probably not a big enough dose—but any port in a storm right?

My lymph nodes remain huge, but I’m not going to know much about why until at least next month. And then only if the rheumatologist finds something definitively wrong. So in the meantime I’m trying to not be a horrible grouch. It’s not my place to say whether or how successful I am, but I try. 

Oh my god do I try!

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.

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I Hate Making Phone Calls

I Hate Making Phone Calls

I need to make some health insurance phone calls this week, and I am dreading it. To the point I doubt whether I can do it. I sat down for an interview with myself to find out why I hate making phone calls so much.

Me: Is it because you hate the phone?

Also me: Partly. I have loathed it since my days at the city hall switchboard.

Me: Is it because it’s tedious health insurance stuff? Again?

Also me: I really would like a break.

Me: Is it because it’s physically difficult to speak?

Also me: Definitely. It’s exhausting trying to make these pipes pipe. My words are hard to understand because even my face muscles and tongue are tired. I often have to repeat myself, and it’s just physically and emotionally exhausting to be reminded how sick I am.

Me: Is it because you have brain fog and the situation and system are complex?

Also me: Fuck yes.

Me: Is it because you’ve internalized the messages that say you’re not just responsible for your health and financial situation but also to blame for it?

Also me: Also yes.

Me: Is it because you have to waste your limited energy being sick, thinking about being sick, and then you are rewarded with only the profound sense of your own mortality and an almost guaranteed promise there will be no solution, just more phone calls?

Also me: [weeping]

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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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Unfortunate Lessons

Unfortunate Lessons

One of the unfortunate lessons I have learned in life, I learned in unfortunate ways. Unfortunately. 

It is: not everyone will tell the truth about you.

It has broadly helpful applications, but it’s not always something I recognize right away. I’m getting better at seeing it earlier, though. Age and wisdom and whatnot.

It is akin to the oft-repeated “You are not responsible for the version of you other people have created in their minds.” 

The first time I grappled with the concept, I saw the liar’s lie for what it was. But it distressed me because I didn’t know the fix was so much easier than changing the liar’s mind. The solution was changing mine.

My ex-husband called me a “deadbeat wife” once. A former co-worker who fancied herself my boss (she should have taken the organizational flowchart out of my desk drawer before I was hired) told another co-worker “Emily didn’t do anything anyway” when I quit.

I realize now these arrows pierced me because I was, at that time and for the most part, a Type A personality.

The heck you mean I don’t do my part when I’m also doing 85% of yours?

What it took me much longer to realize is that they weren’t lying about me so much as lying to themselves. I was free to remove myself from the situation completely.

And so I did.

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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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Infectious Disease Appointment Scheduled

Infectious Disease Appointment Scheduled

I have an appointment with an infectious disease doctor! It’s not until the middle of May. On the one hand that feels so far away. On the other hand, I really need the bills to be spread out so I have time to raise money, so…yay?

While poking around in my patient portal, I realized there are a couple of outstanding blood test results from Friday’s visit with Dr. Onc. 

One of them, an ANA test, is a repeat test I remember having at least twice prior to my brain tumor diagnosis. It was irregular then, but those results were not actually helpful. So I don’t anticipate getting anything valuable from the results this time either. 

In fact, while reading up on it again and discovering how uselessly hedge-y the interpretation of antinuclear antibody test results can be, I wonder why it’s ever ordered. 

Whatever. There’s always a chance it’ll provide a clue. Right? I guess? Maybe?

The other is an HIV test. Dr. Onc just shrugged at that when he mentioned it, as I recall. Y’all, he’s trying. Seriously trying. 

It’s really hard not to be mad at my body, but I think it’s more accurate to be mad at my blood. It never, ever reveals anything helpful. At least my brain is like, “would you please look at this fucking thing?”

[Please pardon me while I take a moment to process the resentment I have for the nurse practitioner who laughed at me for using the word “seronegative” back in 2016—presumably for not buying formal medical training entitling me to use terminology we’d both understand.]

Anyway, thanks to my friend Eva, I’ve got some extra birthday cash to put towards my bills. It might seem like a not-fun way to spend birthday money, but I assure you it’s worth the lifted weight to get closer to a zero-balance. Particularly with the cancer center.

It might not always seem like it by my writing, but I want to state for posterity that the people who do the work do deserve to get paid well for it. It’s the US healthcare system that puts the strain on me now. Jacking up prices and hurting patients are the inevitable consequences when the insurance company’s only goal is profit.

But now I’m just repeating things I’ve said a thousand times before.

Have a nice Monday.

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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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