Hope and First World Despair

Hope and First World Despair

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.

Unfinished

Unfinished

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.

I’ll title this later. Maybe.

I’ll title this later. Maybe.

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.

I’m gonna take a nap now.

MRI Results Are In

MRI Results Are In

MRI results are in. The radiologist’s report showed up in my patient portal. Long story short: “Previously described enhancement in the mid ventral medulla appears less pronounced on the current exam.”

As a cancer patient with an inoperable brain tumor, I feel like the word “appears” is doing some extra work. But I mostly feel relief. It hasn’t grown!

I texted my immediate family last night with the MRI results, and then added Double Stuf Oreos and Ben & Jerry’s to the curbside grocery order that Dan picked up this morning.

Par. Tay.

I used to number these scans, but I’ve lost track and don’t feel like counting all the reports in my patient portal. Maybe later. I’m averaging about 5 a year since 2017. So I’m guesstimating around 25? Maybe?

As usual, the radiologist noted THICC mucus in my sinuses. At this point, I blame the cat. I am slightly allergic, and my immune system is borked. Plus blaming Izzy is payback for all the times she’s fished cellophane out of my trashcan this week and left it for me to pick up.

Meanwhile, construction continues at Mom’s. She told me the shower is no longer in the garage, they moved it inside. (w00t!) It’s one of those big-ticket fixtures that has to be placed first, and then they’ll build around it. So, yeah, kind of a big deal.

By the way, another $400 in donations will pay off the unit AND installation. Which is under 50% of the goal we set, but is also more than I expected.

I’ll probably have more ice cream to celebrate reaching that milestone. Ice cream has always been my favorite food. But with stomatitis, it’s medicinal, okay? Leave me alone.

Gosh!

Mom said they hoped to have framing finished for the whole basement this weekend. It’s taking shape, and the progress is exciting to watch.

More updates when I have them. Enjoy your #Caturday, folks.

I’m a Bad Ass. The end.

I’m a Bad Ass. The end.

Note to self: Always use the Heart and Vascular Institue hospital entrance. No noses in sight, and personal space abounds.

Yesterday’s MRI experience wasn’t the worst I’ve ever had, but it also wasn’t the best. I skated by a couple swarms of visitors on the elevators, and it was such a relief.

Because radiology is in the basement, everyone saw the elevator was going down and waited to catch the next one. There was a properly masked woman in scrubs who got confused when I boarded.

“What floor do you need?” she was ready to push a button for me.

When I told her I was going to the basement, she seemed less concerned. “Oh! Well that’s where we’re going!”

Then she led me to the MRI check-in and even pushed the wheelchair button so I could shuffle on through with my rollator.

After checking in, the MRI tech tried to start an IV for the contrast. When techs hear I’m on chemo, they always ask so hopefully if I have a port.

“It’s oral chemo,” I reply watching the light fade from their eyes. We both know chemo veins are rat bastards—and to make things just a little more difficult, a larger-gauge needle is required so they can get the contrast in quickly. “I’m pretty easy going about this,” I say encouragingly.

It took three sticks altogether. After a little digging on my right arm, he said, “I’m not a proud man. Let me get a second set of eyes.” A nurse came in and got one going on my left arm, but there was some discussion about veins and I remember her repeatedly telling me to keep breathing.

I didn’t realize I was holding my breath, to be honest.

Oh yeah, that’s why I feel lightheaded.

I’m not squeamish when it comes to needles, but my brain can’t do two things at once. Like, say, breathe AND wish the MRI was over.

Inside the tube, they played some piano music. Instrumental, but I recognized a hymn from my church-going childhood, and I immediately pictured my dad standing in the church foyer.

Now, for those of you who’ve never had an MRI, you have to be really still in the machine or you can blur the images and they have to start over, making an unpleasant experience drag out even longer.

So naturally, being exhausted, I felt some breakthrough grief welling up. I was on the verge of sobbing from my shoulders, the way kids who fall off their bikes do, but somehow I managed to stifle it.

I think I was able to suck it up by reminding myself how long my head would be strapped into the brace even if everything went perfectly.

An hour and a half is a very long time to be perfectly still. A solo piano version of Leonard Cohen’s “Hallelujah” played next. That song desperately needs to be sung. I mean, it’s an amazing song. But it’s overdone now. And then for the melody to just be plinking keys without feeling or dynamic range? Gah! It was awful.

I’m 95% sure it was an electronic keyboard actually. It was emotionally flat, so either synthesized sound or the pianist was a psychopath.

Anyway….

It was a long 90 minutes folks. When “All I Ask of You” started playing I remember feeling curled up and twisted from head to toe. I reminded myself it was physically impossible to be in the position my brain was trying to tell me I was in and still be on the MRI table.

But the song wrapped up at almost exactly the same time the screeching ended. I was pretty dizzy, so I asked to be wheeled to the main waiting area. The MRI tech took me on a staff elevator, where everyone was properly masked.

Dan picked me up. I ate ice cream. I am a bad ass. The end.

New T-Shirt Idea

New T-Shirt Idea

The new T-shirt idea is coming. Wait for it.

My MRI is in a couple hours, and I’m spending a lot of time inside my own head thinking about unpleasant things. Not even cancer related really.

I am simultaneously ready for this to be over and wishing it wouldn’t start. It’s a long MRI day. Technically two appointments, but it will all just feel like one long scan for the person inside the tube.

That’ll be me, by the way.

I do most appointments alone. Dan just drops me off because there’s no point in both of us getting on the elevator where someone will absolutely have their mask pulled under their chin.

Is it just me, or are noses obscene now?

It feels like the best choice two immunocompromised people can make, but I feel untethered. Mostly alone. Rollating down long, unfamiliar hallways while everything around me spins.

I’m carefully numb. I’m not scared of hospitalization. I just dread One More Thing.

When I think about people who can’t be bothered to properly mask in a hospital, I get depressed. So fuck them. I’m just going to be angry instead. It’s easier.

I’ve got a new T-shirt idea. I’ll design one that says. “I’m on Medicare. Every time I land in the hospital, Joe Biden raises gas prices. ” I bet I’d get my personal space back. Shoot, I might even get an elevator all to myself.

“But, Emily, that’s not at all how Medicare…”

Shhhhh.

I mean, who among us hasn’t handed a toddler an iPad?

Construction Update!

Construction Update!

In my most recent GoFundMe update, I mentioned that the plumbing passed inspection. Here’s photographic evidence. Look at that sexy shower drain!

Biscuits for Breakfast

Biscuits for Breakfast

My body won’t decide if it’s hot or cold and the top sheet and quilt are no longer anchored to the foot of the bed. That’s how you know yesterday was a chemo day.

Breakfast went okay. I had a biscuit with a little jam and water. After it felt settled, I even had a second biscuit.

That got me singing “Biscuits and Butter” by Carrie Newcomer, but I could only recall the lines “I packed them biscuits and butter / and never saw them again.” So I got worried the woman in the song had poisoned her family and had to do a little lyric research. Whew!

Tangent.

I’m pretty sure now that trying to move through the vertigo causes the majority of my vomiting. If I stay in place a little longer than I’d like too, my odds of keeping food down increase exponentially.

The biscuits were surprisingly good. Just those frozen off-brand pucks of dough from the big box store, but really tasty. Of course, most things taste different to me. So what do I know?

I can promise you, though, that the frozen biscuits are so much better than the canned ones. Less fun to open, but you can’t have everything.

Anyway, I think I’ll do the temodar thing until Friday as planned, but then next week is my MRI, so I’m thinking I’ll take that week off. Chemo elevates anxiety, and I’d be pretty embarrassed if I puked in the screeching magnetic rage tube.

I’m getting the perfusion MRI next Wednesday. That’s the one that takes a long-ass time. Too bad I can’t play Animal Crossing while I’m in there.

It’s Friday I’m in…Pain

It’s Friday I’m in…Pain

And just like that my good sleep streak is over. It was about 2:00 am when I fell asleep last night, and I didn’t get up until around 9:00 this morning. It’s Friday, and I’m in a whole lotta pain, kids.

“I hurt so much. What is happening to me?” I grumbled when Dan brought me my morning Liquid IV.

“I think it’s supposed to rain today.”

I’m like someone with arthritis. Sort of. I can predict the weather, but instead of a cranky knee or hip, my entire body screams out in inflammation—from my neck fat to my duodenum to my fifth metatarsal. Every thing hurts.

I’m scanning my body right now for something that doesn’t hurt, and I got nothing. Maaaaybe my right earlobe, but only if I don’t think about it too hard.

I’m glad I got some chores done yesterday (wait, am I though?), because today is going to be absolutely worthless. It took everything I had to microwave that bean and cheese burrito for lunch.

I took two Tylenol. God knows why, but I always start with Tylenol even though it doesn’t sooth anything. Not even my internalized feelings of uselessness.

I wonder if living in mom’s basement will help? I’m serious. Maybe spending time underground will shelter me from weather changes. Because Animal Crossing isn’t helping me at all today. I tried, though. Caught seven new species in about 90 minutes because it’s my first July playing.

I wish I’d told Dan to pick up some Ben & Jerry’s yesterday. I thought about putting it on the grocery list, but I was like, “Emily, you don’t need that.”

Well today I do. Thanks for nothing, internal voice of reason!

Nothing Compares 2U

Nothing Compares 2U

For the past week I’ve been saying it’s time to shave my head again. I’ve also been waking up every morning with the song “Nothing Compares 2U” by Sinéad O’Connor stuck in my nugget.

Coincidence?

I’ll let you decide.

Oh, and fun fact: the internet tells me that song was written by Prince. A lot of times I read a fact like that and will be like, my entire life is a lie. This time, though, I absolutely hear it.

This morning Dan and I went to McDonald’s (curbside) to get my favorite chemo breakfast. I’m not overly proud of eating fast food this frequently. But on chemo, you do what you gotta do.

Plus, I put the restaurant app on my phone and they’ve been doing double points during breakfast hours. I’ve earned a free, large frappe. It’s caffeinated dessert at 9 am. Scratch that. It’s a LARGE caffeinated dessert at 9 am. And all I had to do to get it was eat there like four times this month.

And I can hear my haters now, “But Emily, you’re on a fixed income. You need to raise money again. Is eating out wise?”

To which I respond. “Clearly you know nothing about being poor or having cancer or being disabled or having a caregiver go a whole year without proper meds because insurance. But if you’re concerned, feel free to send me a gift card.

Besides, if my food stays down, so do the really pricey meds. My frappe is tasty AND frugal, baby! Tuck that away for when *you* get cancer. You’re welcome.”

Welp. It’s Thursday, and I have a lot to get to today: run Chad, shave my head, shower, fold a basket of laundry, update my Amazon list, and maybe play some Animal Crossing. 

Reminder: don’t say that “must be nice” or whatever unless you would also like to do all of that with brain cancer.

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