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’m trying to ease back into daily Zentangle practice without making a huge mess of my desk or unpacking too many supplies. So I picked up a Zentangle tile yesterday and today to test out some new-to-me media that came in the CZT supply kit.
It turns out that I’ve lost a lot of dexterity in my dominant hand being away from making videos for basically an entire year. So I’m exploring how to embrace shaky, inconsistent lines. At least until I can improve upon them. Accepting wobbly line work is the easy part.
The difficult part is stopping my eyes from rolling around in my head when I look down at the paper. It helps a lot if I keep the tile away from me a bit, but my habit is to nearly put my nose on the paper. I like to really get in there for precision, which isn’t a great habit for filming anyway. Unless I want to cut a whole lot of the back of my head from the footage. So breaking the habit will be to my advantage.
But can I do it?
I do have the old portable drawing table my brother gave me to elevate my drawing surface and get a more suitable angle, but that’s also packed away. It would help my posture, and since I don’t have the overhead camera angle to consider for the webinar, it’s potentially a good idea to ease some of the stress in my neck and shoulders.
I’ll decide whether or not to have Dan set it up for me when it’s closer to training next month. Right now I just want to take a few minutes each day to hold a Micron again. But, also, considering how I want my desk set up isn’t something that I can put off until the last minute. I’m slow. Made slower by constantly having to pivot when something no longer works for me.
Amazingly, my YouTube channel has kept growing during my year-long chemo hiatus. I’m approaching 13,000 subscribers despite saying the police suck at wellness checks and noting how Trump bungled our COVID response—and on a platform rife with complete jerks.
So. Maybe it would be 20,000 subscribers by now if I was willing to color inside the lines. Can you imagine though? If I stop ruffling feathers, that’s how you know I’m dealing with some stuff.
For now, I am content to spend more time blogging, but after we move, lookout YouTube. Speaking of the move, Mom told me this morning that she’s going to be more selective about the pictures she sends me so the big reveal will be more impressive. She did text me this and gave me permission to share it.
Seeing how she sent a picture of a window being installed where one didn’t exist before, the overall impression I’m getting is that really dramatic things are happening.
Also, I gave her the fundraiser status, and she was pretty impressed. I feel like being a professional beggar is how I can contribute. Cancer gives you all kinds of new life skills. Who knew? (Spoiler: literally everyone who currently has or has ever had it.)
Thanks to all of you for helping out. Enjoy your #Caturday.
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!)
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.
I had an appointment to see my oncologist this morning. A 6:45 am arrival for a 7:00 am appointment . Followed by labs. Followed by a Covid booster. The cancer center was mostly quiet.
My doctor mentioned the good results from my MRI, and then we got down to business. I told her how I had to pause chemo—again—and explained how I was battling fatigue and some painful cysts and that they usually go away on their own if I give my body a break from the temozolomide.
Of course, she wanted to have a look at my armpit.
She told me the medical term. “OK,” I said. It was two words that I didn’t comprehend at the time, and I don’t think I’d even recognize them if I heard them again.
Anyway, she said if I wasn’t taking chemo because of the cysts, that wasn’t a very good reason; she could prescribe antibiotics. But if I wasn’t taking chemo because of fatigue, that was a good reason to take a break.
I explained that my fatigue was severe. (Though maybe it’s because my body is fighting that skin infection, now that I think about it. Who knows? There are just way too many variables.) And we agreed that I’d call in for the antibiotics if my skin didn’t keep getting better.
The labs were one stick. The vaccine was also no big deal. The hardest part was being in the infusion center where the staff’s voices were bouncing off the hard, sterile walls. Sounds hurt me these days, and I felt like they were all screaming at me. They weren’t, of course, but tell that to my ears. Or maybe don’t. Yeah, definitely don’t.
Back to my oncologist though. She was asking me about my fatigue and probing with follow up questions, probably because my responses were short and not entirely helpful. I explained how I spend a lot of time in bed and never went anywhere, and she looked up from her notes and looked at me and said, “So coming here is really an ordeal for you isn’t it?”
“Yes,” I agreed. But what I’m thinking now as I write this is “YES! THANK YOU.” Sometimes I need for my exhaustion to be someone else’s idea, because explaining it is too great a burden. Sometimes anything more taxing than a simple yes or no is just Too Much™.
I wouldn’t even be writing this now if I werent afraid of losing my thoughts and recollections. That reminds me, the doctor asked about my second shingles vax, and I confessed I hadn’t done it because I’d completely forgotten about it.
That just goes to show you how drained I am. I pressed for this vaccine myself because I had the shingles back in December, and they were unbearable. And I never ever ever want to have them again.