I don’t even know where to begin. So I’ll just say what I feel: Eat a bowl, haters
The last few days have been epically bad. First I went on nortriptyline, then I got notice my divorce forms had mistakes, then I went off nortriptyline, then Rudy got mad at me, then I had a neverending panic attack, and then I got brain zaps. And I still can’t feel my hands.
To deal with panic attacks, my primary put me on nortriptyline in addition to the Lexapro. Mom is pretty sure I had a seizure on the nortriptyline, which I’ve taken before. I didn’t anticipate a problem except for being groggy.
It was a problem though—I couldn’t remember how I got into a wheelchair—and I feel like I have regressed, not improved. Logical Me knows that’s not how any of this works and recovery is not a straight line but Reactive Me is worried that this is permanent. That I will never get better.
In the middle of all of that, I got a notice from the divorce people that stuff was wrong with my paperwork, and in trying to fix it I kept creating more problems. So I’m in limbo until I hear back. The last I heard was something like “will mail these to you if all looks good.” That if is doing some seriously heavy lifting.
After 2 weeks of giving nortriptyline a shot, it was clear it wasn’t working so I went off of it. And like going off of all antidepressants it wasn’t a lot of fun. My blood pressure bottomed out to the point I was fainting just trying to sit up. Of course no one believed I was that sensitive to that little dosage, so I had to overexplain myself and not say “fuck you” to everybody who was worried. The restraint nobody knows I’m spending energy on y’all.
Then the other night Rudy got mad at me. He said “f [my] attention” which he explained away, but it’s just not sitting right with me. I have a standing agreement with myself not to make any regretful life decisions on weed or suffering withdrawal from antidepressants, so I’m biting my tongue.
But it feels razor sharp in my mouth right now. If there’s one thing I can still cling to, it’s my impulse control. I think that comes free with every anxiety disorder. That whole fawning to save my life thing.
Speaking of anxiety, all of this chaos has given me one rolling panic attack. As soon as one clears, it feels like another is on its way. It’s disheartening because I was actually doing quite well…
I’m sorry, I must interrupt. My blood pressure is still really low, but I pooped! This calls for a celebration! Please happy dance in place.
The Brain Zaps were intense and numerous yesterday. They have been weaker and fewer so far this morning. I’d like for them to have not happened, but it’s not for nothin’ I’ve been called hypersensitive to drugs.
And last but not least, my hands. I can’t feel a damn thing with them right now. So it’s super hard to use my phone and eat. Trying not to get trapped by anxious and depressed thoughts with all of this going on?
I had an oncology visit this morning. The MRI results came in Saturday and had me anxious. The report said the tumor showed slight growth. I don’t fear death, but I do dread me some chemo, and my mind was stuck running through all the prep and barfing in my future and internally I was screaming “no chemo!”
Basically, I was worried I’d worry and lose my progress with PT and anxiety if I had to endure treatment right now.
Turns out the radiologist was just thorough. My oncologist said it was compared to a 2022 MRI not the last one, and it wasn’t significantly bigger anyway. I don’t have to go back for an MRI for six months or see the oncologist until January.
[Insert giant exhale here.]
This was a very significant test of my progress handling anxiety. I learned two things: 1.) when things are hard, I need to up my dosage of weed, and 2.) I have made a shit-ton of progress recognizing and allowing panic attacks.
Yesterday was one of my best days in a long-ass time, and with an oncology appointment on the brink, that’s saying something.
I took a few stair steps getting to the car this morning. They weren’t as smooth as I would have liked, but I did them. That’s like twice now. Go me!
I think the AFO brace I was fitted for last week will help with that stair stuff too. My right ankle needs to feel secure so I can feel safer on my feet. That’s a few weeks out though. And I’ll keep doing what I can in the meantime while the brace is being fabricated.
That’s all. I finished the last of the apple cider gummies, so it’s time to pick a new edible to try. I’ve got pills, a snickerdoodle, and a drink mixer. Decisions, decisions!
Sometimes I feel sorry for myself and eat Oreos. Today is one of those days. Relative to recent feelings of accomplishment, today sucks. I know that comparison is the proverbial thief of joy, but that doesn’t mean my brain can stop comparing.
I want every day to be a little better than the one before, but that’s not how it works. And the recent weather changes, what with the storms and tornadoes and all, have landed me in the land of elevated pain levels. Which makes me not want to move. Which depresses me.
Shoves Oreo in mouth.
Part of my problem is that I’m fundraising again. I don’t have words to describe how exhausting and demoralizing it is to need money to live while asshat billionaires have asshat far-from-billionaires convinced I’m the useless eater.
At times like this my mind goes back to the insurance company peon who said I didn’t deserve health insurance (and therefore healthcare). I know it’s bullshit—that she’s the reprehensible one—but that doesn’t mean that I’m unaffected. And that doesn’t mean there aren’t days when the bastards get me down.
I hope one day the brain tumor cells I donated to science save someone she loves. Partly because everyone deserves a life free of cancer, but mostly for spite. Because fuck her for living rent free in my head. The astrocytoma takes up enough space.
Eats another Oreo.
Another thing: some days I feel like an untouchable. Though I have plenty of evidence to the contrary, being 8 years out from diagnosis leaves the brain to wonder why I’m not dead yet. And if I wonder that, what must everyone else be wondering? Of course I don’t know, but my brain is very good at imagining people are tired of me existing.
Maybe it’s survivor’s guilt. If so, it’s more self-centered than I thought.
Maybe this Oreo will help.
The forecast says the barometric pressure should stabilize soon, so I hope my complex migraine will fuck off with the storms. It makes me crave sugar, and I feel like everything inside my skin is three sizes too big. I feel like the undersides of the skin of my left side have suffered rug-burn.
It’ll subside, along with the tongue swelling caused by black pepper and the oversensitivity to light and fragrance when the inflammation recedes. But until then, I’ll just have another Oreo.
Monday’s dentist visit to get a temporary crown was hard on me. I’m just now getting around to writing about it, though, because the physical exertion of PT this week plus the stress of the dental visit depleted my energy stores.
For the uninitiated, chemo is traditionally very hard on teeth.
All the puking plus all the being too dizzy to move and brush my teeth plus suffering through dry mouth was always going to be bad news for my teeth. So my feelings of general dentist anxiety were met with visions of horror stories I’d heard from my cancered friends and the tens of thousands of dollars they’d needed on top of cancer treatment costs because their teeth were literally disintegrating.
I can’t imagine radiation helped me much either.
***
I was eating dinner last week when I chewed something uncharacteristically gritty. I ran my tongue over my molars and could feel a tiny hole. “I think I lost a filling,” I told Mom, who recommended her dentist. I hadn’t been since my first round of chemo in 2017, so I was anticipating a nightmare. But I called Friday and they got me in Monday.
I was so distraught that Dan had to bear hug and lower my rigid self into the dentist’s chair. (I still have panic attacks that immobilize me, even though they are less frequent and less severe these days.) But the staff was kind. And after the new patient exam, the dentist told me that if I didn’t mind seeing the other dentist at the practice and waiting a bit, they could take care of me without coming back the next day
I had lost part of a filling and a chunk of tooth and needed a temporary crown while the permanent crown was in the works. This is my first crown, and believe you me: those suckers ain’t cheap. (So I’m asking for help again, because SSDI is an absolute joke.)
My dentist also recommended scaling and Invisalign down the road. I was all set to be like “I’m not doing orthodontics again” but she explained that cosmetics weren’t the issue. The overcrowding made it difficult to brush and floss, which would hasten decay. Basically, pay now or pay later.
***
In all, I was in the chair for three and a half hours. The Novacaine wasn’t working terribly well on me, and I ended up stopping them twice while they were drilling out the bulk of the original filling. The stress set off my autoimmune whatever-the-hell-doctors-can’t-diagnose, and I ended up with a low-grade fever, muscle aches, and a cold sore Tuesday morning.
The dentist at the practice was very kind and knowledgeable, but looked 13. It was added trauma to realize I am an old. Next thing I know I’ll be saying things like “whippersnapper” and talking about my friend Arthur. Arthur Itis.
Anyway, when he called me a trooper, I knew it was going to be a fun 48 hours of liquid meal replacement shakes.
I am better now, and proud of me for being an entire adult about my dental health. Bottom line is that without EMDR therapy and physical therapy, I’d have made a thousand excuses to stay home and avoid seeing a dentist. I’m proud of me and so grateful this didn’t happen before I was ready.
All of that—crown, cleaning, X-rays, Invisalign—means now I need to raise about $8,000. Yikes. If you’d like to contribute a few dollars to my dental fund, please donate at PayPal.me/EmilySuess or my Brain Cancer GoFundMe.
I’ve been thoroughly enjoying not having any doctor appointments to blog about this month, but the medical mystery of whether or not I have some kind of chemo-induced lupus still looms.
I started back on the Plaquenil (hydroxychloroquine) last night. I’m not feeling a hundred percent—more on that in a second—but I think things are good enough that I can track whether the medicine is going to be helpful.
Plus, when I stopped taking the Plaquenil, I told the nurse practitioner (and myself) that I would start up again when I felt better. My next appointment with rheumatology is at the end of October, so given how long this drug might need to take effect, It seems like a good idea to give it another try now rather than later.
I was feeling better after the anxiety work, and I started reintroducing some of my favorite foods to test my IBS. Though I haven’t endured my worst IBS-C ever the past couple of weeks, constipation has definitely moved back up the problematic scale to affect my overall quality of life.
Over the weekend I had a buffalo chicken pizza. It tasted glorious but had jalapenos on it. I removed the jalapenos originally when placing the online order but screwed up another part of the order, deleted the wrong pizza on accident, and then forgot to remove the peppers when I added my pizza back. (Honestly, the buffalo sauce was probably too much on its own.)
No big deal, right? Ha!
The inflammatory effects were immediate. I picked the jalapenos off subsequent slices, but the damage was done.
Not that one single misstep undid me. The weather was unstable. I was already feeling worse, which kicked off a series of “eat this to distract yourself from the pain” cues in my brain. I knew what was happening, but my lizard brain wasn’t interested in the pedantic warnings of my prefrontal cortex.
At least I understand the process of the habit now, thanks to Unwinding Anxiety.
Anyway, it’s pumpkin spice latte season, so I was off my sleep game too, consuming caffeine like it doesn’t keep me on the edge of awake all night.
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.”
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.
“Allergic disorders commonly occur in patients with systemic lupus erythematosus (SLE) and allergies to some drugs may occasionally be related to disease flares.”
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.”
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:
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.
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.
Cannabutter, the key ingredient in some cannabis-infused edibles, is perfect for 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.
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.
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.)
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?
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.
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.
