Lupus with an Asterisk

Lupus with an Asterisk

I have to channel all this hope somewhere, so I’ve been reading and contemplating lupus the last 36 hours or so since my appointment with the rheumatologist.

I have been muddling over the best way to characterize what’s going on with me healthwise. I want to talk about it in the easiest way without mischaracterizing the details for new visitors.

So here’s the deal. I’m going to call this collection of progressively horrible symptoms I’ve been experiencing for the last couple of years lupus with an asterisk.

The asterisk meaning the diagnosis isn’t official. It’s just that my particular brand of autoimmune dysfunction aligns best with that diagnosis for now, and I don’t want to mess with the caveats every time I blog.

I’ll just link back to this page, and let people read what they find useful. Of course I understand this Dx could change at anytime, but someone who lands here through a search, for example, might benefit from some context.

Drug-induced Lupus

But for Temodar, I don’t think I’d be contemplating a lupus diagnosis at all. I believe that chemotherapy further freaked out my immune system when the cancer already had it confused.

Just based on anecdotal family history, I think I was genetically predisposed to autoimmune shenanigans.

There’s such a thing as drug-induced lupus, and that makes the most sense to me. I don’t have any scientific proof of that claim; it’s just my best working theory. I’m not a medical professional, but I’m a professional chronic illness patient from way back.

In 2017, I had an ER-level reaction to the increased dose of Temodar that was supposed to kick off adjuvant chemotherapy, and a surprise reaction to sulfa antibiotics shortly thereafter. It just feels like lupus is very likely, you dig?

“Whenever possible, people with lupus should avoid taking sulfa-containing antibiotics (or sulfonamides) as these drugs can exacerbate lupus symptoms in some individuals. People with lupus are also more likely to be allergic to sulfonamides compared to the general population.”

lupus.org

Lupus and Allergies

In addition to the sulfa reaction, I’ve had various reactions to weird things that feel like allergies. Sneezing and the usual allergic malaise have come my way after being in contact with previously unremarkable stuff.

There was arugula. Then the spinach. Then toothpaste.

Here’s what I learned:

“Allergic disorders commonly occur in patients with systemic lupus erythematosus (SLE) and allergies to some drugs may occasionally be related to disease flares.”

PubMed

Lupus and IBS

Man, everything I eat makes me hurt now. I’ve been blogging about constipation and diarrhea for a while, too. But also there’s bloating, swelling, and constant abdominal pain I don’t detail much because I don’t know what to say. I’m miserable and too exhausted by it to elaborate.

Turns out gut stuff is not uncommon for people with lupus:

“A person living with lupus may develop intestinal issues, such as IBS. IBS can cause similar symptoms to gastroenteritis, such as abdominal pain and diarrhea.”

Medical News Today

Other Potential Lupus Symptoms

With the symptoms of cancer and the side effects of associated treatment, it’s hard to know what’s what. Here are some other things I experience that may or may not be lupus symptoms:

  • Heat intolerance
  • Swollen lymph nodes
  • Soft tissue inflammation
  • Positive ANA
  • Dry mouth and eyes
  • Sun sensitivity (rashes)
  • General fatigue
  • Muscle pain and fatigue
  • Elevated sedimentation rate
  • Headaches

Lupus with an Asterisk

So that’s why I think I have lupus and the rheumatologist is starting me on Plaquenil (hydroxychloroquine).

When I try to make sense of why I feel so terrible at a potentially early stage of the autoimmune disease, I rationalize that my baseline was utter shit to begin with. Brain tumors are problematic like that. With that POV, lupus makes a fair bit of sense.

Still, there are symptoms I don’t have—like fever, joint inflammation, and the characteristic butterfly rash—that would help make this diagnosis easier.

Anyway, I don’t care if randos think I’m a hypochondriac, but I want people looking here for potential answers to their own medical mysteries to have a factual understanding of mine.

Rheumatology Appointment

Rheumatology Appointment

I fully intend to get to the rheumatology appointment. But first I want to write about how I can still write, and what a joy that is.

The last time I had a job (conventionally—I don’t mean to imply that chronic illness and disability aren’t vacation-less, salary-less jobs) I was a technical writer for Wolfram. One of the things I did there was draft online help articles for the company’s software, Mathematica.

Well, today I woke up to a thankful comment on my recent, totally out of place help article here on this site. The one where I explain how to pair smart devices on Spectrum 2.4 GHz Wi-Fi. And it was so validating! Not only does it mean I can still communicate helpful things, but I also probably was good at my job back then!

This is a ridiculously big deal to me. I know I can’t do tech writing gainfully these days, but that I can do it at all? That some part of the old me still lurks in here somewhere? It’s important to me, turns out. That comment made my Friday.

But moving on to my much-dreaded doctor’s appointment. The TL;DR for those of you who care (but not that much) is: I gave up a lot of blood, and I go back to rheumatology in a couple of weeks for the results.

The nurse practitioner (NP) recommended I still see infectious disease, but I can only worry about one thing at a time right now. Anyway, the fact that she mentioned infectious disease makes me think my symptoms don’t make any diagnosis seem too obvious.

She did say that my ANA results were a true positive, which is helpful for not having my symptoms dismissed right out of the gate.

My issue all those years ago was my 1:160 ANA ratio (or whatever, I might have the number wrong) was too low to be medically relevant. A certain portion of the healthy population also returns those results. Which, one might argue, is why patient symptom reporting should be taken seriously. But that’s an old rant for a shitty doctor and one I don’t feel like thinking about today.

You’re welcome.

Bottom line assessment of the NP and doctor I saw yesterday: caring, professional, smart. The bar for care was low, thanks to my misgivings about the reasonableness of the Missouri legislature, but I would be fine with treatment from either of these two—even here in Illinois.

So, as I said, they took a lot of blood. Somewhere around 6 or 8 vials. (I’m not sure because I didn’t look. I’m usually fine looking, but I knew there was going to be a lot, and I was overheated. So out of an abundance of caution…)

It’s not the most I’ve ever given up, but by comparison my standard chemo draw was 2 vials during treatment.

If phlebotomy is your kink, partner up with a rheumatologist. Follow me for more relationship advice.

All in all, it wasn’t as horrible as I dreamed it would be. But I still can’t have steroids until they know what’s going on. They’d mask any autoimmune findings. I knew this would be their answer, but I had to try. I’m all kinds of desperate. I’d have cried yesterday if I could make tears.

Next rheumatology appointment July 8. Watch this space.

Best Methods for Making Cannabutter

Best Methods for Making Cannabutter

Cannabutter, the cornerstone for cannabis-infused edibles, is the key ingredient in many culinary delights. Whether you’re a seasoned cannabis connoisseur or a cancer patient like me, mastering the art of making cannabutter can be helpful.

I’ll cover my two favorite methods for making cannabutter: stove top and slow cooker.

Small slow cooker with reusable coffee filter lifted over it. The filter is dripping cannabutter back into the crockpot
Making cannabutter in mini slow cooker.

Choose Quality Ingredients

Like anything you cook, bake, or steep, quality matters to your tastebuds. Select high-quality cannabis flower with the flavor profile and ratio of THC to CBD you prefer. However, if you’re on a budget, shake will always get you where you’re going.

I also recommend using unsalted butter so you’ll have more control over taste and sodium content. Not everyone has perfect blood pressure.

Decarboxylation

Before infusing cannabis, it must undergo decarboxylation. This process, done simply by heating your cannabis, activates cannabinoids like THC and CBD.

Spread evenly ground cannabis on a parchment-lined baking sheet and bake it in the oven at 250°F (120°C) for about 30 minutes.

If you don’t decarb cannabis first, you will probably be disappointed with your cannabutter.

Stove top infusing can be done on any oven range.

Stovetop Method

  • Place the butter and decarboxylated cannabis in a pot over low heat (gas or electric).
  • Cook on low for 3 hours, stirring occasionally.
  • Strain the mixture through a mesh strainer, reusable coffee basket filter or cheesecloth.
  • Cool and store the cannabutter in an airtight container in the refrigerator or freezer.

Slow Cooker Method

  • Melt the butter on low heat.
  • Steep decarbed cannabis in butter on low for 3 hours using a filter, if you prefer, for easy straining.
  • Cool and store cannabutter in an airtight container in the refrigerator or freezer.
Top Pick
Elite Gourmet small electric Slow Cooker with Ceramic pot

Elite Gourmet Slow Cooker

$14.99

Ceramic Pot, Adjustable Temp, Entrees, Sauces, Stews & Dips, Dishwasher Safe Glass Lid & Crock, 1.5 Quart, Stainless Steel

Dosage Control

Start with a small amount of cannabis, an ounce or so, and gradually increase the dosage as needed. If you’re like me, you’ll want to take notes, as everyone reacts differently to different potencies.

Keep in mind that the potency of homemade edibles isn’t a hard science. You may need to tweak how much cannabis you use depending on the strain, age, and type of cannabis you choose.

Storage and Usage

Store your cannabutter in an airtight container in the refrigerator for up to two weeks or in the freezer for longer-term storage.

Don’t forget to label the container clearly to avoid confusion. If you’re using a clear container for storage, you’ll notice it’s distinctly green color. (It looks like very smooth guacamole when I make it the way I like.)

How to make cannabutter: comparing cooled cannabutter to guacamole in the refrigerator. Both are the same shade of green
After steeping, cannabutter will take a greenish hue.

When using cannabutter in recipes, you may need to adjust your recipe according to portion size and desired effects.

Experiment and Bon Appetit!

Making cannabutter is a little bit science and a little bit art. Don’t be afraid to experiment with different strains, infusion methods, and recipes to find what works best for you. It’s perfect for baking brownies, simmering sauces, or just spreading it on a toasted English muffin.

These are the best methods I’ve found for making cannabutter. Which is your favorite?

This post contains affiliate links.

Free Brain Images for Brain Tumor Awareness Month

Free Brain Images for Brain Tumor Awareness Month

Seeing how I already donated some brain tumor cells to researchers back in 2017, there probably isn’t much more I can contribute to Brain Tumor Awareness Month this year than giving you permission to use these copyright free brain images on your website, blog, or social media profiles.

Change them up however you like. You can give attribution if you want, but it’s not necessary. You can also use them anytime—not just in May.

Common Brain Tumor Symptoms

It’s important you know how to recognize the symptoms in yourself and recognize them in others. Symptoms vary by tumor location, but these are the most common:

  • Headaches that are persistent or severe
  • Abnormal gait or awkward coordination that make it difficult to walk
  • Muscle weakness
  • Imbalance
  • Dizziness or vertigo
  • Fatigue
  • Nausea or vomiting
  • Pins and needles or numbness
  • Inability to speak or understand language
  • Confusion
  • Blurred vision
  • Dfficulty speaking or slurred speech
  • Personality or mood changes
  • Seizures

About My Brain Tumor

i was diagnosed with a diffuse astrocytoma on my brain stem in 2017 and have done radiation once, and chemotherapy a few times—both temozolomide and gleostine.

Treatment reduced the size of my tumor, but it’s in a spot that neurosurgeons consider inoperable, and I still live with it. It’s classified as grade II, and is relatively slow-growing. I was initially treated at Barnes-Jewish hospital in St. Louis, and have since received care from fantastic doctors at Carle in Champaign-Urbana, IL and Cancer Care Specialists of Illinois in O’Fallon, IL.

if you use any of these free brain images this May for Brain Tumor Awareness Month and want me to know, leave me a comment and drop a link so I can follow you.

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.

PayPal | GoFundMe | Wishlist

From To-Do to Done-Did

From To-Do to Done-Did

Today, Super Bowl Sunday, I didn’t get much of anything done. I was awake until 4:00 a.m. and spent a nice chunk of my afternoon napping. Yesterday, though, that’s when I switched a few list items from To-Do to Done-Did. I:

  • Transferred a balance I was carrying on one credit card to another with a lower interest rate.
  • Ordered a camera mount that works with my new set up at the new place.
  • Researched getting a monitor riser for attaching the camera mount clamp to my desk. (I ultimately decided to hold off and try something homemade—a.k.a. cheap—first.)
  • Fixed my email configuration so that I can send from my emilysuess.com addy again.
  • Ordered Project Pack 20 from Zentangle HQ. The videos from HQ won’t be out until next month, but I had the money now. (If you know, you know.)
  • Did some extremely light exercise because my cholesterol results are in, and yikes! y’all.
  • Washed AND folded a load of laundry.

I have a tendency to downplay my accomplishments by comparing what I can do now with what I could do before brain cancer. That’s not really fair. So I’m going to stop that nonsense and remember that I can still do things, still live.

And just like everything else, I’ll remember better if I write, or type, it out here.

For instance, the other morning I was scooping poop out of the litter box like it was nothing. And I stopped for a second after flushing the toilet and thought to myself, “Holy crap! (Ha!) Three months ago getting this done was an ordeal. Now it’s just part of my day!”

I’m getting a little better at climbing stairs too. I still hold the railing with both hands and yank myself upwards like I’m practicing for a tug-of-war tournament. But the more I get the long-term effects of chemo out of my system, the more I will be able to do—and the better I will be able to do it.

Fatigue and pain are my two biggest complaints and they are so closely connected, it’s hard to know what, if anything, will help. Well, after a little more time off methylphenidate, I’m feeling like my pain is still lessening.

Tomorrow the housekeeping crew is coming, and I am freaking thrilled. I told Dan and my mom that I would bake something on those days (every other Monday) because the kitchen counters will be distraction-free. I need the clarity to follow written instructions. If there’s a fork on the counter, it’s like turning the lights off at a night baseball game in my brain.

Turns out having brain cells irradiated and taking chemo that knows its way past the blood-brain barrier can lead to executive dysfunction. Go figure!

Not Gonna Sugar Coat It

Not Gonna Sugar Coat It

Things kind of suck right now. I don’t want to list all the reasons why, so you either have to take my word that it’s worse than I let on or think me a drama queen with a penchant for vague-blogging. Honestly, I don’t care which it is. What I will say is that I have to make a trip back to the house I was hoping to have been done with and the New Digs only have one working sink–a wash tub–in the laundry room. I can’t tell if things are still hard because I set my hopes too high, or if things are genuinely hard. In the interest of giving myself the benefit of the doubt, however, I’m just going to say things are still as hard as they were, just in different ways.

The financial pressure that I had hoped would ease has not yet, and it’s impossible for me not to think about money constantly. Maybe once the house in Urbana sells? Maybe once we have a functioning kitchen? I don’t know. There are things we need but can’t afford and there are things we don’t need that I’m being pressured to bring back here. I love Dan. He knows this. He also knows that his refusal to part with material things makes my life infinitely harder because I’ve said so many, many times. So instead of dying mad about it, I’m going to type it here: His stuff burdens ME. Also my Mom is—and I say this lovingly—very particular when it comes to housekeeping . And we are not.

Fuck it. Let’s just write this thing.

It’s not that I wouldn’t like to have a tidy house all the time, it’s that two disabled people physically CANNOT. And Chad, our robot vacuum won’t run here. I contacted support about the correct app for the Neabot not being in the Google Play Store any longer and received a reply the next day saying to download a different app that, as it turns out, is also not in the app store. Call me a pessimist, but if customer support doesn’t know what apps they have published, I think we’re going to have to buy a new robot vacuum. So while I was previously very happy to have Chad and would have posted a link to his Amazon page, I refuse to recommend him now.

And leaving out affiliate links is no small thing for me either, because we are fucking broke. Again. No, we’re not in danger of losing the roof over our heads or going hungry at least, and I want to make that clear. But I have to find doctors and make appointments, and try to be presentable when plumbers and cleaners and electricians get scheduled. There’s no room for “panic about money again” in my datebook.

I need a haircut and to feel like I don’t wake up every morning with two different sets of eggshells at my feet. I need the thermostat to show up on my phone or the weather to stabilize so I don’t have to fucking get up to change it. And I can’t let any of that shit go very easily because I’m not just money broke, I’m energy broke. I’m not saying any of this to get help either, because saying thank you is also a fucking burden.

Again, I’m not always this cranky. But stress has reversed my chemopause, and my words are the sharpest thing on me right now. Speaking of chemo, other people want me to be taking it right now. Fuck other people.

I’m overwhelmed. People would help—have helped—but I can’t even brain hard enough to figure out what else to ask for. I’m shutting down. Not because I’m stubborn, but because I have already used up my spoons for the first and second quarters of 2023.

Earlier this week Mom said something to me about how we shouldn’t really have the pets, which hurt. I told her flatly that we got the pets before I was diagnosed suggesting the ever-popular excuse “Nobody predicted any of this in 2015.” She nodded in agreement, but it would be helpful if I wasn’t constantly defending my every fucking life choice all the goddamn time.

I’m trying not to let stuff get me down, but being in the middle of every unspoken conflict and trying to keep the peace is not anything I have the capacity to do right now. I deflect what I can, but I end up absorbing most of it. Which is probably why I’m muggle sick, sporting a cold sore, and perpetually exhausted. My Mom is in her seventies and can run circles around both of us. She has done so much, but the one thing she can’t do is empathize. It’s not a shortcoming, no one knows what anyone else is experiencing at a given moment, but it’s also not something I can handle well.

Until our kitchen and bathroom countertops are installed, we have zero use of our kitchen, and we can’t really unpack anything. We’re living out of boxes in various rooms and at least a dozen times a day one or the other of us is asking “Have you seen X?” We had to leave our refrigerator at the old house and are borrowing a dorm fridge for the time being. Mom is going to get a new fridge and let us use her old one, but Dan wants a French door fridge like we had and…Mom is getting a French door fridge. It’s her right to buy what she wants. And it’s Dan’s right to feel bitter about everything. And it’s my right to fucking scream until I’m blue in the face.

AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAGGGGGGGGGGGGGGGGGGGGGGGGHHHHHHHHHHHHHHHHHHHHHH

If you pray or send good vibes into the universe or whatever, please put in an ask that we actually get our kitchen and bathroom countertops on Tuesday as promised by the installers. At least once that’s done we can put stuff in cabinets and get rid of more boxes. I actually have a housewarming list on Amazon, but I’m afraid to post a link to it right now because we don’t have anywhere to put stuff people might want to give us. If you want to help, maybe watch a video on my YouTube channel instead, because I’m probably not going to be able to put up a new video for a while longer and I don’t want the algorithm to think no one cares anymore.

On a more positive note, we got our first bit of feedback on the sale of the Urbana house, and it was all positive. Despite our inability to fix cosmetic things, the structure is in excellent shape. And the feedback we got on the price we’re asking is “just right.” The house was listed Monday and we’ve already had 4 showings. That paired with the fact that inventory is so low in Urbana have me hopeful that it will sell soon and with much less fuss than when I tried selling off that hunk of junk condo I had to lawyer my ex-husband out of.

There’s more, if you can believe it, but I’m tired and typing hurts.

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.

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.

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.

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