Sep 21, 2022 | Brain Tumor, Breaking News
I am having a day. Actually, a couple of days. I’ve been wanting to say I feel like my nerves are inflamed for a while now, but it sounded a little ridiculous to me. So I finally Googled whether or not nerves can be inflamed, and I’ll be damned if I didn’t just self-diagnose vestibular neuritis.
I can’t even express how much easier and more productive my doctor visits are about to become. Words are EVERYTHING, and at some point “brain cancer” and “ouch” are just too freaking vague to be helpful.
Of course, I’m always a little hesitant to be bringing things up to doctors after an online search, but then I keep reminding myself that my brain tumor diagnosis came only after I asked for MS to be ruled out.
Also, the crappy doctors with egos the size of Asia? They haven’t been in the picture for a while now. I can calm down about being ignored, but I do have to remind myself. My default setting is still panic about being charged hundreds of dollars for a professional gaslighting.
So, I would label my current experience a flare of vestibular neuritis. I’m dizzier than usually, hurtier (it’s a word now) than usual, and I feel so internally swollen I want to split open my skin and see if that brings any relief. I mean, I will refrain from slicing myself open, but just so you get the idea here.
Weather-related pain, migraine, oversensitivity to sound, light, and touch. I have it all folks. And as horrible as I feel, I am so grateful to see it as a whole, name-able thing.
Oh, coincidentally, I bought some of those Loop earplugs. I’m a fan. I got the Quiet version so I can still hear most things but I don’t wince at the pain of Dan’s normal speaking voice or feel assaulted by Boomer’s bark when a delivery person pulls up.
Despite not feeling like doing anything today, I did manage to get our move scheduled for next month with Two Men and a Truck. Our house is being listed privately until we move and it will be easier to get interior pictures for the full listing. Stuff is happening, and while I feel pressure, I don’t feel overwhelmed.
I probably exacerbated the conditions for a flare by pushing through four days of CZT training. But I am so glad I did it. Opportunity isn’t guaranteed to anyone, but when it presents itself, us unhealthy poors will move proverbial mountains to take advantage. Even if there’s only a miniscule chance we’ll make it through.
In the interests of recovery, I won’t be overdoing anything for a while, but I’m excited to even want to do stuff. Hope is a helluva drug.
More storms are in the forecast, so I know I need to be mindful of my screentime. Plus I want to save a little screen time for Letitia James appreciation Twitter. More later. Happy Wednesday, all.
P.S. Our GoFundMe is so close to being fully funded! Can you help us make it to 100% by October 1 by sharing this link on your social media?
https://gofund.me/b72390b3
Sep 4, 2022 | Brain Tumor
I don’t have a twin, so I shout “Twinsies!” any time I have something unexpected in common with another human being. My husband’s twin’s wife and I share a birthday. Birthday Twinsies! My online friend and I share a name and chronic pain. Also Twinsies! The owner/operator of Brain Cancer Diaries and I have similar tumors in similar locations. Tumor Twinsies!
You get the idea. Anyway, Rudy, my Tumor Twin, launched a podcast, and the first episode dropped today. It’s a little trippy, and a lot relatable. And the reason I think you should listen to it is so you can understand me a little better. See, there are a lot of thoughts swirling around in my head at any given moment, but I can only write one down at a time.
Somewhere in the middle of Random Redux Review Episode 1, Rudy mentions how none of his past accomplishments are relevant anymore. I’m paraphrasing. But as I was listening I was imagining that gif of Meryl Streep and the hair I used to wash and blow dry everyday before I drove myself to work.
The more bits and pieces you pick up from him, the less energy I expend trying to explain certain things about living with this super annoying brain tumor. So you support his creative endeavors and give me a break at the same time. Because I have a really annoying need to be understood.
I mean, Rudy’s an entirely other person. Arguably more talented and stuff. Basically anything he creates is worthy of consuming (especially that one video episode he did with a very special guest) but this blog is about me. So I have to make this post about me.
Anyway. He didn’t ask me to write this, but you should subscribe to his stuff. So that I can pretend I give back half as much as I get in this life. Because, again, this is all about me.
Aug 16, 2022 | Activism, Brain Tumor, Breaking News
I had a phone visit with my palliative care PRN this morning. Long story short I’m going to take a short course of prednisone during CZT training to make sure I can do the thing. Because it’s only a week’s worth of generic ‘roids at a low dose, my Rx only costs about $4.
Which brings me to the whole “Medicare can negotiate drug prices” part of the Inflation Reduction Act. I’ve read in a few places that it will benefit seniors specifically, but I’m not sure if disabled people on Medicare are just casually being erased from the headlines again, or if I’m still extra screwed. I’m trying to find an answer.
This is just one reason why I’m still engaged politically when I should be “focusing on getting better.” My shingles vaccines, which I’ve mentioned before, cost $200 EACH, for example, and I’m not allowed to make enough money for our household to survive or they’ll cut my disability income completely and we’ll have even less than not enough.
Maybe if the “safety net” wasn’t an all or nothing proposition?
Bottom line, if anyone out there wants me to shut up about it already (and, yes, people do sometimes say it out loud) they can kiss my astrocytoma.
I’m relieved it’s only $4 for this prescription. The antibiotic ointment my oncologist prescribed a couple of weeks ago cost $35. Not exactly in the budget, and I prefer to put my creativity into Zentangling—not wondering how to afford medicine.
I know these posts aren’t fun for people to read. They are much less fun to write. But no one is going to do it for me. This is as boot-strappy as it gets for the girl who grew up in the most polluted county in Indiana. (In case someone tries to blame my cellphone usage for my brain cancer again instead of spending equal time wondering if our environmental regulations are too lax.)
I know, I know. Blaming me is so much easier.
Aug 10, 2022 | Brain Tumor, Breaking News
Today I’m kind of a mixed bag of hope and first-world despair. My disability check posted this morning. (It was Patreon, a much-needed but also much smaller source of income, that posted on Monday.)
For kicks, I decided to check on my closest McDonald’s* (the only one for miles not owned by the family of Rodney Davis) but it’s still not delivering through GrubHub*.
I’m worried they’re not renewing their contract now and I’m trying to sort out what to do about chemo now that the only joy my tastebuds have in life has been taken from me.
Will I even take temozolomide again?
I’m just kidding. Lighten up, loves. It’s only brain cancer, and there are still Ben and Jerry*.
Also, before anyone goes to the trouble of suggesting it, the restaurant is on DoorDash, but we don’t like to talk about DoorDash here.
Oh! Talking about chemo reminds me! A CounterSocial friend sent me a link to this article while I was suffering from insomnia last night: New Injectable Gel Offers Promise for Tough-to-Treat Brain Tumors. It’s for GBM, which is not my type of brain cancer, but it’s the most aggressive type of brain cancer, so that’s very cool. There’s also potential for this “brain caulk,” as my friend called it, to work against other solid Tumors. Breast cancer was mentioned.
Let’s go Badgers!
My supply kit for Zentangle training arrived yesterday. I went through the checklist, read the info packet, and now I’m just like, can we start this now? How about now?
Give me hope and a couple of things to be grateful for (like CZT training, a more-than-generous GoFundMe donation, an FBI raid of Mar-a-Lago, and an accessible shower) and I almost—ALMOST—dont feel sorry for myself about the universe putting my beloved caramel frappe just out of reach.
Since I was still awake at 5:00 am this morning, I’m not committing to anything that can’t be paused for a nap for the rest of the day. Probably going to tuck into a 6-hour video on drawing the eye—part of a drawing instructional series taught by Marc Leone of Northern Kentucky University. (See The Drawing Database channel on YouTube if you’re looking for a non-profit, collegiate approach to studying drawing. It’s kind of amazing. And its freaking free!)
Happy Hump Day to all the camels who celebrate.
*This post isn’t sponsored, but it could be.
Aug 8, 2022 | Brain Tumor, Breaking News
I woke up to a deposit notification email from my bank this morning and I was all set to celebrate with my favorite breakfast, but the food delivery app said the restaurant was closed.
It wasn’t the neighborhood McDonald’s that was closed, just GrubHub’s delivery. But since I can’t drive it might as well be closed.
It’s Monday, and I feel personally attacked. Not a great start to my week.
Now, Dan probably would have made a run for me, but I didn’t suggest it because 1.) I budget my asks; 2.) the Corolla smells like it’s burning lately; and 3.) the garage door only closes if Dan pushes it down past the Nope Point—the spot about halfway down the track where it meets some imperceptible obstruction and reverses course.
I think the garage door and my esophagus are in collusion, now that I’m writing this.
My whole point in bringing up the car and the garage is just that I worry one or both will crap out soon if we go around pretending like the world isn’t comprised of entropy and horrendously bad timing. That kind of stuff sucks when all else is fine. And, spoiler alert: hardly anything is fine over here.
Whew! That was a long walk just to tell you I went for another restaurant’s version of a breakfast biscuit and iced coffee this morning, but it wasn’t as good. I’ve been saying for years McDonald’s puts crack in their beverages.
I don’t really believe it’s crack, but they do something.
At any rate, I’m caffeinated and fed, and it was cheaper than our usual breakfast treat by about $7 dollars.
Oh, since I don’t tweet my every thought anymore, I just need to say that Marjorie Taylor Greene understood the assignment and if that $20 was tossed in the rage cage by an onlooker, so did they.
*intermission music*
Oof. Wendy’s is dead to me. First, they take away the vanilla Frosty to market test that Strawberry Quik-flavored nightmare in a cardboard cup. And now this?
Why does eating have to be such a struggle?
I’m going back to bed.
