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.

Viewers Like You

Viewers Like You

I’m stealing one from the PBS station playbook and asking for support from viewers like you. It’s helpful for you to do a lot of things besides or in addition to donating. Everything matters, and I’m grateful for the support.

It’s time to renew site hosting. While I won’t have to take this puppy offline if I don’t get help, it is $200 annually to run this blog. That’s a good chunk o’ change for a girl on SSDI, and the site isn’t (yet) self-sustaining.

(But it’s still way cheaper than therapy, so.)

There are non-money and money ways to support me. You might be doing them already. Thank you! You might not be doing any of them. That’s fine. Thank you for reading!

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Thanks in advance for all your help. And thanks in arrears for the support so far. I leave you with some cat photos for your enjoyment and I’ll be back to regular blogging in the next one.

Peace, love, and medical marijuana.

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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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A Brief Griping Hiatus

A Brief Griping Hiatus

I’m interrupting my usual blog post to bring you a brief griping hiatus. Starting with mentioning that my Mom bought a used LegXercise contraption that we saw advertised on TV, and it’s helping me rest more comfortably.

Hoo-freaking-ray! Let’s do a little review, shall we?

As you likely already know, I have no energy right now, but I still need to move and circulate my blood and stuff. Holy cow, this thing does almost all the work. All I have to do is sit upright for a few minutes at a time. (A challenge but an accomplishable one.)

Already today I feel that good “using muscles I didn’t know I had” feeling in my back. It’s been so long since I’ve felt like things were hopeful. But I’m getting to the toilet faster. Giddyup, bitches!

Mom is using it too so she can get the blood pumping without straining her cranky knee. So if you’re old, infirm, or both it might be something you want to try. I feel like it’s kind of pricey, but I have a much cheaper manual version and I’m too weak to make it go. So I’m genuinely lucky to have access to something like this.

Next up: my bruised rib pain. It no longer hurts for that rib to merely exist. Now it only hurts if I touch it. I mean, any time a pain lessens or stops, it’s a water-into-wine kind of miracle. That almost never happens for me, so when it does I take notice!

Let’s all take a moment to acknowledge that a pain is going away (and forget about how it happened).

Insert prayer hands emoji here.

The weather in the Metro East is cold and rainy, which would usually mean I’m sore and grouchy. So also take advantage of me not griping right now.

Quantities limited. While supplies last.

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It’s Me, I’m the Insomniac

It’s Me, I’m the Insomniac

Any insomniac will tell you that a snoring partner is the absolute worst. It’s me. I’m the insomniac.

I know Dan’s not taunting me while he snores in the other room, but only when I’m not sleep deprived. The rest of the time I want the cats to meow-scream in his ears until he’s the one not sleeping. 

Sleep deprived Emily is not the good Emily.

We are expecting several days of rain and snow in these parts as the temperature fluctuates between freezing and not-freezing. In the before times, temperature changes wouldn’t bother me much. Now, however, it makes me want to take weed and eat too much chocolate in an attempt to fake my way to comfort.

I used to say cancer made me old before my time, had me shaking a fist at the clouds while predicting that “weather is coming.” But maybe I’m of a certain age now anyway.

Regardless, I’ve eaten all the chocolate and weed is too dehydrating and expensive to take without excessive forethought.

The brutal cold we experienced in the last couple of days wasn’t actually that bad for my various inflammations. I suppose because things were consistently cold? It’s the back-and-forth with bonus precipitation that makes me want to throat punch Mother Nature. She’s pulled the “maybe this is trending toward tolerable” rug out from under me yet again. The old crank.

Coincidentally, it’s very difficult to meditate when I am in increasingly horrific pain. The bruised rib thing isn’t going away quickly either. It’s just not a good time for me to do indecisive Midwest winter, okay?

Okay, now that I’ve got all this griping out on the internet where it belongs, I’m going to try sleeping again. If that fails—and there’s a really good chance it will—I’ll play Animal Crossing: Pocket Camp.

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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.

Meditation for Anxiety

Meditation for Anxiety

I want to be clear when I talk about meditation for anxiety, I’m talking about MY anxiety. Your mileage may vary.

The greatest perk of meditation is that it is so completely disruptive. It seems counterintuitive that something I think of as calming is actually disruptive, but it’s true. It puts a stick in the spokes of my worry wheel. 

It has been especially helpful at bedtime when I am most likely to be going round and round with my anxious thoughts.

What will I wear tomorrow? What if I have to pee, and there aren’t any grab bars? How hard will it be to get to the car? Will the doctors judge me for my lack of makeup, dishevelled hair, and hairy armpits? Will I break Dan? Will my support network abandon me?

But for two nights before my last doctor appointment, I slept fine. Without melatonin or weed or Xanax. Like, holy shit, y’all!

There are definitely some things others would classify as spiritual elements of meditation that do not mean much to me, but I don’t need them to mean much. It’s a take-a-penny-leave-a-penny situation. I leave a lot of coins in the tray by the cash register. Someone else can use them.

My worries over money continue as the bills mount again, but I’ve decided not to make a GoFundMe for now. GFM campaigns are effective but a huge energy suck, and I’m already running on fumes. 

Instead I remind myself that Mom’s house is paid for, and I will not be homeless because I need surgery or treatment. I will just copy and paste my support links from time to time and let what happens happen.

I will be OK.

Surgery is Happening

Surgery is Happening

Note to self: Don’t ask Dan to get chocolate from Sam’s when you’re having a craving and you’ve just taken weed.

Yesterday was my appointment with the surgeon for the consult. Surgery is happening.

The consult went okay, and Doctor S answered all the questions that I had. On February 2nd, I’ll be having a lymph node removed from either my groin or my armpit. Ultrasound will determine which one is easiest to get to, so TBD on that spec.

He did say that they will fully examine the tissue to find out what’s freaking going on, but if it’s a viral infection we might not find out which. Yay. 

We’re not just looking for lymphoma this time, though. That makes this round feel like it could provide useful information. Lord knows I’m capital-d DONE with doctors and nurses punching my glands with their bony fingers though. 

It hurts more every time they do it. I jokingly asked how many lymph nodes were needed for a human to survive and could they take all of them while they’re in there.

I asked if I was facing general or local anesthesia, and doc said he’d do either and it was my choice. I’m leaning local, just because I think getting myself to the bathroom after will be easier.

No pain meds will be prescribed. Just Tylenol if needed. (Which, let’s be real, means I need to save up for some edibles.)

Recovery and risk are minimal.

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We spent more time than should be allowable by law in the waiting room yesterday, so here are some terrible, non-HIPAA violating pictures I took to help pass the time.

This is what my medical anxiety looks like

This is what my medical anxiety looks like

As I mentioned previously, in my attempts to free myself from at least some medical anxiety, I’ve been listening to Tara Brach’s podcast a lot. 

I heard her say that the reason writing or journaling can be helpful is that it moves obsessive thinking from the limbic brain and forces us to process thoughts in the frontal cortex. 

Is it truly helpful? I dunno. I am attempting to find out by blogging more frequently. (I stopped for a while because I was so exhausted, but maybe writing less is a luxury I don’t have.)

So, it’s experiment time, because this is what my medical anxiety looks like.

I’ve got a consult with a surgeon about these damn lymph nodes Thursday, and I’ve caught myself more than once obsessing over what I want to tell him, and what I want to know.

I realize why this happens—my brain tumor was misdiagnosed for a couple of years and getting to diagnosis felt like my burden alone. But knowing why something *is* doesn’t automatically fix the problem. 

I repeatedly remind myself, and anyone who will listen, that this isn’t my fault. There’s no perfect way to present a new doctor with my medical history. But that kind of logic is for people who aren’t stuck in fight, flight, or freeze. I’m not there yet.

So, here are the things I want to say and ask. Hopefully by writing them here, I will find a way to sleep tonight instead of rolling through my thoughts over and over in the wee hours. 

Because I answer some of my own questions, but I don’t remember my answers. Like, ever. And I just lather, rinse, repeat until the sun comes up. 

Not healthy. Not helpful.

Anyway, if you’re bored of this post already, please find something else to read that you enjoy. Shit’s gonna be about me (even more than usual) for a while.

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Dear Doctor,

Please help me. When doctors hear I have a brain tumor, they are understandably hesitant to act. I get it and I’m not mad. However, I’ve been dealing with this one lymph node for a couple of years. I’m beyond over it.

The pain and fatigue are unbearable. I need to know why. The longer I go without intervention, the worse it gets. I’ve had 2 needle biopsies, a CT scan, multiple MRIs, and a PET scan. None of them have confirmed anything. My tumor is stable, so it’s not that.

I swear to God, even a healthy person would be exhausted by all these appointments.

My Dad had metastatic cancer in his lymph nodes. It wasn’t found until one was cut out of his neck surgically. We don’t know where the original cancer was because it couldn’t be found. Which led us to suspect it had been missed during one of his many sinus surgeries. So, yeah, I am a little anxious, if I hadn’t mentioned that already.

Will you be checking for anything else? Despite my fears about lymphoma, I am, with my limited knowledge, leaning more toward an infection diagnosis. In addition to past test results, here’s why:

I have a prescription antiviral on hand for cold sores because my immune system ain’t what she used to be. I got a cold sore recently, and took the Rx. It cleared up the cold sore, but it also reduced the size of my lymph nodes and my fatigue improved slightly. Improvement, though still not enough for my satisfaction, was much better than the times I was prescribed antibiotics.

I don’t know if that’s relevant, but it feels relevant to me. So I ask if testing for anything else is possible because my oncologist said ordering blood tests would be a shot in the dark for him.

What is the procedure for pain meds after the surgery? After my brain surgery I was told I couldn’t get more pain meds, which is fine. But also something I need to plan ahead for. 

I didn’t wean from whatever I was on—just took it as prescribed—and had to quit cold turkey. My intestines were very angry about that, and I’d like to not repeat it, please.

Sincerely,

Emily

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