Brain Freeze

Brain Freeze

My anxiety is up, so I didn’t blog yesterday. It’s disabling like that. Just completely freezes my brain.

What’s got me sleepless and experiencing brain freeze currently? For starters Dan has a doctor’s appointment today, and I’ve been rolling around various topics related to paying the inevitable bill, finding him a new PCP, and getting his meds.

I have a couple of my own appointments on the horizon. The first is sorting out whether I’m going to the infectious disease doctor or not. 

I cancelled the rheumatologist already. I’m just so tired of these meaningless exertions, and I was having trouble getting someone to take me to Missouri. I mean, I don’t want to be there anyway. The fact that no one else does either just makes it easier to say no.

Then my routine oncology appointment will include scheduling an MRI. How is it time for that crap already?

I’m also concerned about making money from this website. I was replacing some Amazon links with Blick.com links (I need Amazon sometimes, but I don’t want to need it) when my mind was like, “wouldn’t it suck if you got this site making just enough to get you kicked off benefits and not enough to live off of?”

Everything about being disabled is stressful. Everything.

And those anxious thoughts preoccupy my brain so that there’s no juice left for executive function. I can’t shower and fold my clothes, let alone make the words make sense. So yesterday was useless to me.

But blogging today must mean I’m recovering, right?

I’ll do my best to hold on to that. Maybe writing down my anxieties will get me through them. Still operating on the theory that writing it down gets it into my frontal cortex, and from my frontal cortex I can get rid of it.

In cuter news there’s a turtle in the yard this morning. Ain’t he adorable?

When Things Don’t Go Well: Cancer Edition

When Things Don’t Go Well: Cancer Edition

Tried recording a little bit of voiceover for a brain tumor friend’s Rock Opera charity thingy, and sometimes these things don’t go well. At least not lying down. I will try again later when I’m sitting up. Otherwise the recording is just going to need a lot of editing.

Monday evening didn’t go well either. There was Taco Bell and a giant stomach bloat, and then a forced shower I wasn’t planning on. 

I think it’s because the cleaners were late? See, we usually order food when they’re done, but they didn’t leave until 4:30, and I usually order by 2:00. That’s a little late for lunch, but it’s usually fine.

However.

When I don’t eat for a long time, and then eat a lot quickly because I am super hungry? 

BOOM.

Just keeping it real. I know how everyone thinks having brain cancer is so glamorous. 

While I whined about the unbudgeted energy I had to use up showering, I lamented that I broke my own 24-hour rule.

The rule is: you can’t make a mess here for 24 hours after the cleaners come. That way I get to enjoy a tidy home once every two weeks. It’s a rule that has historically applied to the pets, but it has since expanded to be the reason we don’t cook here every other Monday.

Well, we have to DoorDash way more frequently than that, but you know what I mean.

One thing I need to do now that I have additional insurance is postpone my rheumatology appointment this week. I’m thinking sometime in June now. But I don’t know, we’ll just see what’s available after coverage starts and what I think I can reasonably expect of myself. June is supposed to be routine MRI month too. And that’s also a whole-ass thing.

The inner dialogue I have regarding the rheumatologist sitch isn’t going well right now either. There’s a whole lot of me saying to myself: just cancel it. It’s going to be a huge waste of time.

That’s the fun of chronic illness. Wanting to be better, but getting nothing but extremely expensive and increasingly exhausting non-answers.

So, yeah. That’s what a blog post looks like when things don’t go well. A lot.

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.

Loss, Brain MRI #21, and Other Hard Shit

Loss, Brain MRI #21, and Other Hard Shit

Good Lord a lot has happened since my last post, and advanced warning: this one is not going to be my feel-good entry of the year.

When we last left off, I was promoting my second-annual, read-it-for-free-in-March promo for Who You Gonna Believe. That went reasonably well, and a few people told me they enjoyed reading it. Always nice to hear!

I was a little late in setting the chapters back to patron-only after the promo, but I did manage to get that done a few days ago. For what it’s worth, I’ve decided to leave the first seven chapters open for public consumption from here on out instead of just the first one.

Shortly after my birthday on March 4, I took that Zentangle class I mentioned. It was a few hours long, and though I enjoyed it immensely, I knew that I had reached my absolute limit for online learning. That, in turn, made me worry about the Certified Zentangle Teacher scholarship thingamajig I’d applied for. I went from “oh, I hope get a scholarship” to “shit, I hope I don’t get it but if I do, I have to power through it.”

Well, luckily for me the Zentangle people notified me a few days later that I hadn’t won the scholarship anyway. That settled that, and I was so relieved.

But then my whole world came crashing down. My Dad died on March 22. As you might imagine, I’ve still got a lot of grief to work through. He hasn’t been gone that long and… I can’t even right now. Maybe I’ll try again later.

So naturally, the universe had me scheduled for brain MRI #21 this week, and I learned that my brain tumor has indeed grown. There was a little uncertainty about it after MRI #20. So Monday’s MRI included the more detailed perfusion imaging.

Anyway… I still haven’t summoned the strength to look at the official report with the specifics, but my oncologist described it to me as “small growth but in an area that makes her nervous.”

I feel like I had the wind knocked out of me by a duffel bag full of grapefruit when Dad died. And then, just as my respiratory system came back online and I took a big gulp of air in, I took another blow to the gut. I’m not going to sugarcoat things right now. It’s all a lot, and it feels like Dan and I have been dealing with various forms of A LOT™ for going on 8 years now.

My local oncologist is working with my oncologist back at Barnes-Jewish in St. Louis for me to have a consult. Clinical trials, potentially another round of radiation, and other meds are being discussed. Though I don’t know what my treatment plan will look like yet. Tumor boards have to review these things and whatnot. So I’m in a very hellish sort of limbo at the moment.

For what it’s worth, my first choice for getting care is Barnes-Jewish, and there’s a clinical trial going on there for IDH mutations (which I have) but I think it’s for Grade III tumors, and mine’s a Grade II. I don’t know, my doctors are looking into all the possibilities. Barnes is my first choice because it’s familiar and it’s close to my mom and my brother and sister-in-law.

In fact, Dan and I have talked off and on about moving closer when additional treatment was all hypothetical. We’d floated the idea of moving to be closer to treatment and our support system. Urbana is lovely, but we moved here because I got a job here. Now that I can’t work, I feel like we’re floating on a little buoy with no land in sight.

Of course, thinking about that kind of change in hypothetical terms was easier for me to wrap my brain around. Now that every little decision feels overwhelming and I can’t even decide what to eat half the time, I doubt I could handle all that a move would entail. I know I’m looking too far ahead, and that I should be in one-day-at-a-time mode, but knowing it and achieving it are worlds apart.

Anyway, for the time being my Zentangle videos and new chapters of WYGB are on hold. If I feel like working on those things, I will. But they’re just not a top priority. Clawing my way through the super important stuff until I reach a little daylight is my main mission. I will probably be posting updates here on the blog and on Twitter if you’re looking for them.

Results of Brain MRI No.17

Results of Brain MRI No.17

Last night the results of Brain MRI #17 posted to my patient portal. So as not to bury the lede: my brain tumor is unchanged from September, but I still have to see my oncologist tomorrow morning to talk about it.

After tomorrow, though, I have two whole weeks off from medical appointments. I won’t know what to do with myself! Oh wait, yes I will. I’ll stress over the fact my next appointment is with a new primary care physician.

Dr. S left the practice months ago, and I had to wait for an opening to establish care with a new one. This comes just shortly after switching neuro-oncologists, and adding palliative care to the mix. So while my cancer might be stable, I am…not so much. I feel ways. Many, many ways.

I don’t think I have the emotional energy for it, so I’m not going to do the usual thing where I break my back trying to help you understand how complicated a switch like this is for me. What I will say is going to new doctors is hard. Going to new doctors after prolonged gaslighting and trauma is—

Oh, hello, fetal position.

Friday’s MRI was scheduled for 7:15 in the morning. No idea why I agreed to that time. I don’t even remember doing it. I mean, I remember sitting on my bed talking to the hospital scheduler and agreeing to something; I don’t remember that “something” was 7:15 in the goddamn morning.

I was clean and appropriately dressed for the occasion, but when the medical receptionist checking me in asked if my dad was a doctor, I stared at her questioningly with my tired brain for a long, hard second. Finally, I got the joke I’ve heard a million times before and forced a laugh, “No relation,” I said.

The technician took me back to an even darker corner of the hospital basement. Every MRI starts with setting up an IV for the contrast and getting asked the same thirty or so questions. Do you have a pacemaker, shrapnel, tattoo, piercings, and so on. Then they check to make sure they’ve got the right person matched with the right procedure.

“And what are we scanning for you today?” the tech asked.

“My brain.”

“And what’s the reason you’re having the MRI?”

“Oh, I’ve got this brain tumor.” I tried to make it sound like no big deal, but my tech was an empathizer. The answer made him pause.

“Oh,” he said, looking me straight in the eye.

“I’M NOT FUCKING GO TO CRY YET!” I screamed internally.

We walked back to the room with the body-sized tube and the super-heavy, super-wide door. And I assumed the position.

Not every machine is the same—there can sometimes be huge differences, at least from a patient’s perspective, even among machines in a single radiology department.

The one I got Friday didn’t have headphones or music. I got foam earplugs. It wasn’t as roomy as the ones at Barnes-Jewish or Siteman either. There was no light inside. It was very much like my first MRI in a mobile unit in a trailer in a clinic parking lot in Danville, IL. Right down to the washcloth I asked them to put over my eyes.

The very caring tech Friday reminded me of the very caring tech in 2017. “Hey, I haven’t left yet!” he tapped my knee. He was yelling so I could hear him with the earplugs in. “Squeeze the panic ball for me so I know it’s working!” A loud tone sounded out in the room.

“Great! Let’s get this over!” I think he said. I gave a thumbs up.

The thing about trauma is that it’s not just the bad things that are triggers. In fact, my personal experience is that the bad triggers are easier to anticipate and therefore easier to ignore. But most of the time I can’t even identify a good trigger, like a very caring rad tech, until it’s too late.

I don’t use the term PTSD, but I often wonder if I qualify. Friday morning I didn’t just remember how scared I was in 2017. I *was* that scared again. For several terrifying minutes, I couldn’t bend my toes. None of my doctors believed me. The weight of their dismissiveness sitting on my chest was so real it could have cracked a rib.

Luckily what I lack in strength, I make up for in resilience. I pulled out of the episode and back into the present by wondering what I’d do if Iran missed Chicago by a hundred and forty miles while I was inside. When that caused its own set of anxiety-related problems, I attempted to do my Alphabethical List of Things thing.

“The category is: the cosmos. And go!”

Asteroid, Black Hole, Constellation, Dark Matter, Einstein, Fusion, Gravitational Wave…

Just being totally honest—I’m still on the verge of tears more than 48 hours later. I’m not crying 24/7, but my mouth is perpetually turned downward and the muscles in the back of my throat ache sharply.

I want to cry, actually. So I can move on. It’s like wanting to vomit so you can be done with the nausea.

This is the aftermath of a “bad” MRI for me. Not all of them trigger me, but enough of them do that I get scanxiety for two solid weeks ahead of the appointment. I’m at my physical and emotional weakest during these times, and so it’s harder to push the usual cancer thoughts out of the way.

If I lash out, flake out, withdraw, or tell you where you can put your positive thinking, at least you’ll know why. It’s because to get the results of Brain MRI No.17, I had to go through Brain MRI No.17.

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Tips for a Brain MRI

Tips for a Brain MRI

This content is available in video form on my YouTube channel. Check it out! Here are some tips for a brain MRI from a seasoned pro.

I consider myself something of a professional when it comes to having MRIs. In fact, my brain tumor has been scanned so many times, I have genuinely lost count of the number of MRIs I’ve undergone since 2017. If you’re nervous about having one because you’re not sure what to expect, that’s understandable. But I think I can help put at least some of you out there at ease, so I’m going to try. The advice I’m about to give is particularly helpful for those of you going in head-first for brain and spine scans.

If you’re claustrophobic? Ask for an anti-anxiety pill.

If you think you’re not claustrophobic? Still ask for an anti anxiety pill.

I didn’t think I was claustrophobic when my doctor screened me before my first scan, but it turns out that I had just never been in such tight quarters before. When the MRI tech slid me in, I freaked out a little. He moved the table back out and let me compose myself. But in hindsight, the whole thing would have probably been much easier with a Xanax.

I don’t need Xanax now, but that’s because MRIs are as common as sneezing for me now. (If you’re lucky, YOU TOO can become desensitized to having MRIs. Kidding. Of course.)

Close your eyes.

…before the table you’re lying on starts moving you inside the tube, and don’t open them again until you’re all the way out. It’s easier to not freak out if you’re not looking at the thing that freaks you out.

Ask for a Washcloth.

If the tech doesn’t bring it up herself, ask her to put a washcloth over your eyes. My scans last from 45 minutes to an hour depending, and that’s a long time to squint your eyes closed, particulalry if you’re stressed. With the washcloth over your eyes it won’t matter if your eyelids involuntarily pop open. And the previous tip I is automatically taken care of.

Be prepared for some really loud honking and buzzing noises.

You will be given earplugs and/or noise cancelling headphones, but they only protect your ears. They don’t completely eliminate the noise. When I get my MRIs, they offer to play music in the headphones if I want. I always say yes, and I always pick something with a nice beat like ’80s pop or classic rock.

Consider learning to meditate.

If you already meditate/practice mindfulness, you are at a GREAT advantage for staying mellow during the scan. If you don’t meditate, maybe give it a try. I have found it so helpful because meditation is essentially just training your brain to focus on things that are helpful while ignoring the stuff that’s potentially stressful.

Contrast will make you feel like you wet your pants, even though you haven’t.

If you’re getting an MRI with contrast: expect some weird but harmless sensations. The IV contrast feels cold in my arm when it goes in, and then I get a warm sensation that makes me feel like I’ve wet my pants a few seconds later. It goes away pretty quickly. But I can see how those things might be a little disconcerting if you’re not anticipating it.

Relax! You get a panic button.

Yes, they’ll give you a panic button! They put a little rubber ball in your hand that you can squeeze if you need to get out for any reason. If you can’t handle it in there, squeeze the ball, the tech will be alerted, and then the tech will always slide you on out. You are never actually trapped in there. Don’t let the freak-out part of your brain tell you otherwise.

Warm blankets are available. You might or might now want them.

You’ll probably be offered warm blankets. I never take them, because I’m almost always hot, and I find that feeling cool air swirl around inside the MRI and inhaling it deeply is pretty calming. However, if you’re always cold and think you might be shiver-y, take the blankets. Moving during the scan can blur the pictures and make it necessary to start that one over. Nobody wants that.

BONUS TIP: If you haven’t already, check your hospital’s website for information on what to expect and any special instructions. The more you know, the less there is to potentially be scared about.

VIDEO: Life with a Brain Tumor: Emily Gets an MRI

VIDEO: Life with a Brain Tumor: Emily Gets an MRI

It’s snowing in Urbana today.  Nothing too serious, but just enough to be ridiculous.

Earlier this week, I had a check up with the fine folks at Siteman Cancer Center. I made this little video about the experience. If you’re not a subscriber to my YouTube channel yet, please subscribe!

[youtube https://www.youtube.com/watch?v=Uabz0J9ws-U]

Q: What’s Worse than Having a Brain Tumor?

Q: What’s Worse than Having a Brain Tumor?

A:

A while ago I got a message from my Wahington University Physicians patient portal that they were switching over to a new system and that I should make copies of any documents in there I wanted to keep.

It took me a few weeks, but I finally got around to saving some of those documents. I put the MRI, cytology, and surgical pathology notes in a folder on my laptop, skipping over the dozens and dozens of blood lab reports.

The new files from Wash U now live with a shitload of other visit summaries and procedural notes I collected from years of trying to find out what was wrong with me.

Halfway through this monumental task, I came across the report from my very first MRI on February 2, 2017. The title of the report read: “MRI Cervical Spine and Brain With and Without Contrast”. A few lines down it said “INDICATION: Weakness, clonus, abnormal gait.”

I started crying.

***

It’s hard to put my finger on exactly why the tears started flowing, but it’s a little bit relief that someone finally figured out was wrong with me, a little bit gratitude that I was still alive, a little bit revisiting the trauma of being told I had a brain tumor, and a whole lot of emotional damage from being treated like an attention seeking liar.

***

I am two different people now. There’s before-diagnosis Emily and there’s after-diagnosis Emily, and after-diagnosis Emily is very, very protective of before-diagnosis Emily. She is frustrated that she can’t reach out and console the woman who was brushed off by doctors for years.

If I could, I’d give BDE a big hug and say, “Prepare yourself. That physician’s assistant is going to roll her eyes at you because you asked about the possibility of a seronegative condition. And the implication will be that you don’t have the proper medical training to use the word seronegative—not like she does. And when you burst into toddler-like sobs because you can no longer help your husband with household chores, she won’t get it. She will mistake your grief over your accumulating disabilities as a cry for help. ‘Are you safe at home?’ she’ll ask.”

I’d also tell her about the doctor that was going to gaslight her over her weight gain. “Cymbalta adds three, maybe five pounds at most.”

“Another will ask you to explain why you don’t walk right, even though he has the fancy tests and the training to find the answers.

Another doctor would attribute one of BDE’s abnormal test results to an issue with a device and never tell her about it. “You’ll overhear her tell the technician ‘That can’t be right’ and nothing more will be done until you can’t walk and have to be wheeled into the doctor’s office.”

“You’re going to be so angry and hurt,” I’d tell BDE. “You’re going to want to sue the worst of the people that failed you. But you’ll be too tired, too emotionally depleted, too financially strapped to even ask a lawyer if you have a case.”

***

I can’t finish this post right now, but I feel like it should end with someone shouting LISTEN TO WOMEN.

End of Treatment Recap

It’s been one week since the doctor told me I was done with chemotherapy. Here’s a recap of how I got this far. I’ll write more about what happens next and how I feel about everything in a future post.

February 2017:

  • Complete first ever MRI of brain and cervical spine.
  • Learn I have a brain tumor.
  • Rush to Barnes-Jewish Hospital in St. Louis that evening.
  • Have numerous tests and brain surgery to biopsy the tumor.
  • Spend something like 9 days in the hospital total.
  • Begin simultaneous radiation therapy and chemotherapy (Temodar) as an outpatient.

April 2017:

  • Finish 5 1/2 weeks of radiation and chemo with relatively few side effects.
  • Go back home to Urbana for a couple of weeks of rest before it’s time for 6 to 12 more monthly rounds of higher-dose chemo.

May 2017:

  • Take the first higher dose of Temodar.
  • Have severe reaction four hours later that dims my sight, muffles my hearing, turns my lips and fingers blue, makes me too weak to stand on my own, causes fever and chills and an unbearable rash, and makes me puke.
  • Lose my health insurance.

June 2017:

  • Try to go off the steroid dexamethasone, end up in ER.
  • Buy Obamacare.
  • See dermatologist about rash.
  • Have skin biopsied. (All clear.)

July 2017:

  • Declared allergic to my first-choice chemotherapy (Temodar).

August 2017:

  • Begin alternate chemotherapy (Gleostine) to be taken ever 6 to 8 weeks.

October 2017:

  • Learn that my tumor shrank. (Par-tay!)

November 2017:

  • Get too poor to buy Obamacare.
  • Sign up for Medicaid and SSDI.

January 2018:

  • Quit dexamethasone.
  • Begin inexplicable bout with permanent dehydration.
  • Lose weight.

February 2018:

  • Have another ER visit to replace fluids.
  • Spend four weeks bedridden.
  • Beg doctor for routine IV hydration.

March 2018:

  • Begin routine IV fluids.
  • Start feeling human again.
  • Watch platelets plummet and wait impatiently to be cleared for round 6 of chemo.
  • Take round 6. Finally.

April 2018:

  • Be decalred done with chemo after 6 rounds.
Even My Fatigue is Tired

Even My Fatigue is Tired

I woke up, did Head and Shoulders Knees and Toes, and washed my morning meds down with a large glass of water. Then I gulped a protein shake. And then I climbed back in bed and began writing this blog post on my phone. (That’s how you know I’m exhausted, because I hate writing on my phone.)

It was something like -2°F last I looked. A life-long fan of winter, I’ve noticed a change this season. I’ve been sick of winter since December 26. I need sunshine and warm air on my cheeks, even though two-thirds of the meds I’m on make me photosensitive and come with warnings: “avoid direct sunlight or perish.”

Or something like that.

I’m anxious in the anxiety way (as opposed to the weird “looking forward to something” way people use the word where I’m originally from). We’re heading to St. Louis this afternoon for a day full of shopping and sightseeing tomorrow.

Did I say sightseeing? I meant tests and doctors. Silly me. Starting at 7:45, which means leaving the folks’ house an hour early to drive into the city and park and allow me time to hobble to the hospital MRIs. (The Center for Advanced Medicine MRIs are closer, but were all booked up. Ugh.)

Anyway, about my anxiety. I haven’t been doing so well lately. A lot of time in bed. A lot.

I’m finally off the dexamethasone, and have been for two weeks, but I can barely walk I’m so weak. And the pinchy pain that keeps nagging me? I think it’s swollen lymph nodes, based on location. My guess for cause would be rebound swelling after being on the dex for so long and then quitting. But honestly I have no fucking idea what the cause is. I know I hurt. I know I’m tired.

And that brings me to the source of my anxiety: I don’t have good things to tell the doctor. See, chronically sick people dread telling their doctors that things aren’t good or improving or at least not getting worse.

Spending years in the fucked up US medical system with a horrible doctor or three conditions patients that it’s on us to feel better whether we do or not. It’s so traumatizing that, even when the bad doctors have all been fired and there are only good ones left, we still feel responsible for not getting better.

“But Emily, you have a brain tumor. Your doctors totally get it,” is something I sometimes tell myself. But I suspect it’s something like a veteran saying to herself, “It’s OK. You’re home now. Fireworks are fine.”

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