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.
“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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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.
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!
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.
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.
- 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.
- 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.
- 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.
- Try to go off the steroid dexamethasone, end up in ER.
- Buy Obamacare.
- See dermatologist about rash.
- Have skin biopsied. (All clear.)
- Declared allergic to my first-choice chemotherapy (Temodar).
- Begin alternate chemotherapy (Gleostine) to be taken ever 6 to 8 weeks.
- Learn that my tumor shrank. (Par-tay!)
- Get too poor to buy Obamacare.
- Sign up for Medicaid and SSDI.
- Quit dexamethasone.
- Begin inexplicable bout with permanent dehydration.
- Lose weight.
- Have another ER visit to replace fluids.
- Spend four weeks bedridden.
- Beg doctor for routine IV hydration.
- 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.
- Be decalred done with chemo after 6 rounds.