Unwinding Anxiety in practice is something I do when the opportunity presents itself. There’s no cramming for this life test. I resolved the anger and anxious fear triggered by my primary doctor’s recent scolding—and in record time, because of this book.
I have a new primary doctor. I realized I had a choice, and I chose not to accept the added burden of dealing with a doctor who thought I deserved an added burden.
Like usual, I wondered for too long whether I was the problem, but in examining my other doctor-patient relationships, it became obvious that no one else was sending me paternalistic messages in my patient portal.
I had to keep reminding myself, I’m not her enemy; I’m job security. But once that truth took hold…
Once I internalized the truth instead of the fear, I was able to place a phone call to a patient advocate and get things sorted out right away.
Now I have a doctor that is physically closer, afiliated with the same hospital system as my oncologist and uses the same patient portal, AND offers me appointment waitlist options by text.
Honestly, this would be better for me even if my old primary doctor was perfect.
I spent a fair amount of time writing and revising a reply to Dr Scold that I’ve opted not to send. In my experience this kind of self-defense usually carries with it the potential for another interaction. Not really looking for that, to be honest. I prefer to set firmer boundaries.
So I’m publishing my reply here as closure and therapy without including the doctor’s real name.
Might as well get a couple of ad impressions for my trouble, right?
Also—and maybe this is pessimistic—but I think I have a better chance of improving experiences if I post a review for patients than if I explain myself to Dr. Scold. I revised my initially glowing review of her online to one that also reflects my newfound discovery.
I feel good about putting this behind me and moving past the anxiety of it all. I feel good for being able to find my way out of this fear of abandonment.
Because that’s how my lizard brain interprets these things post-2014. That unless I crack the code and conform to unspoken rules or expectations, I won’t be believed by the only people who can help.
Man, fuck that noise.
The reply:
I am not new to disability, but I am new to this level of disability.
I don’t know what information didn’t get communicated on your side, but I imagine it was significant after discovering how much was missing on my side.
Your message was the first time any of the handful of people I’d communicated with at AMG had relayed any information regarding 3 to 6 month office visits for levothyroxine. In addition to being on this medication for over 25 years without such requirements, I have limits. Ignoring them comes with physical and mental consequences.
The difference between the thyroid labs ordered by you versus those ordered by my oncologist were not communicated until your paternalistic scolding.
A couple of months ago, I waited by my phone for a telehealth appointment that never happened. I considered it a forgivable oversight then but wonder now how frequently things are missed or lost in translation and then blamed on the patient.
No one ever offered even an unexplained “no” to my refill requests. Retrospectively, it feels like I was expected to intuit what everyone else was thinking.
It was insulting to have my life reduced to a “situation.” I didn’t need favors or “leniency.” I needed feasible solutions to specific needs.
Wondering where I stand with a physician requires energy I simply don’t possess. My medical anxiety, which I work to minimize, becomes overwhelming when I have to guess what other people need.
I wish you well. I will not be returning to your office for care.
This year for Brain Tumor Awareness Month, I’m seven years post-diagnosis. It feels like a big deal.
My Brain Tumor Diagnosis
In February 2017, I was diagnosed with a rare, relatively slow-growing brain tumor. The kind of brain cancer that is overshadowed in the news by stories of politicians with GBM, for example
I believe those stories are important and impactful, but so is mine. So are the stories of all the people whose lives are altered by treatment, bills, and disability and whose names aren’t immediately recognizable.
Every Brain Tumor is Different
Brain tumors can be benign or malignant. They can be in different areas of the brain that affect different processes in the body. For example, seizures are a common symptom of brain tumors, yet I’ve never had one. I am most effected by muscle issues, balance problems, and pain. But there are any number of complications that a patient might report.
Support for Brain Tumor Survivors
Empathy is what I want most. But it’s a very elusive thing, trying to explain to people with actual words what I’m experiencing. I always feel like a failure in the end. There are no words.
When it comes to cancer, you hear a lot of well-intentioned people talk about early detection, but that’s an oversimplification for sure. Since pain was and is my key complaint, I didn’t get an MRI when I first sensed something was wrong. what I got was a misdiagnosis and a couple years of Bonus Struggle.
Lacking a dramatic symptom, you might have to push for answers too. I want people who haven’t yet had this fight to try to imagine what it’s like. I want people who are going through it to know I care.
Patient stories matter, and I encourage you to talk about Brain Tumor Awareness Month 2024 with me. If you need free graphics, I shared some here.
Go Gray In May Brain Tumor Cancer Awareness Day Grey Ribbon T-Shirt
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.
Who You Gonna Believe is my memoir. It’s covers my eventful life circa 2003 to present and explores the traumas and lessons that come with being married to a self-professed compulsive liar and narcissist. (For the record, I use the word “narcissist” colloquially, not clinically. But I think a case could be made.) Then it takes a look at how those events might have maybe saved my life.
Wut?
Yeah, I know.
DO YOU NAME NAMES?
No. I’ve changed most of the names and obscured certain identifying details with the sole intent of avoiding being contacted by my ex. (I’m 99% sure he still Googles himself daily, if not hourly.) Of course, people who have known me for years will know who I’m writing about. But in that case, I can’t really further defame a person who’s already publicly defamed himself.
HOW CAN I READ WHO YOU GONNA BELIEVE?
WYGB is being published serially and exclusively for my Patreon Patrons. All chapters are available on Patreon and excerpts may be available on other platforms. Update: As of December 2019, I am working hard to make WYGB available on this website. If you encounter snags here, you can always access content through patreon.com/EmilySuess.
Become a Patron!
SERIALLY? WHAT DOES THAT EVEN MEAN?
Chapters will be published on a monthly basis at the end of each month or as soon as I reach a new subscriber goal. For example, Chapter 1 is scheduled for release on April 30, 2019. However, if I reach 20 patrons before that date, Chapter 1 will drop early. (See the Goals section on my Patreon page for current release information.) I will make every effort to publish new content 24-48 hours after a goal is reached. However, I’m disabled and have brain cancer and hope you’ll all be understanding if I have to fudge that a little bit once or twice.
CAN I SHARE MY ACCOUNT WITH NON-PATRONS?
I think one subscriber per household is pretty fair considering you can choose what you pay, but if you want to share posts with your grandma in Tallahassee I’m not going to crap a brick. I also won’t be policing who’s paying to read and who’s found a way to read it for free. Hell, if you want to print and distribute copies for your own profit, all I ask is that you be willing to live with the guilt of stealing money from someone with brain cancer. Basically, just do what you think is fair and support me if you can, okay?
CAN I PAY TO READ THE WHOLE THING AT ONCE?
No, but not because I’m a jerk. You can’t read the whole thing at once because I’m not finished with it yet. In an ideal world this could have maybe been an option for readers, but as I mentioned previously, Lincoln Financial Group terminated my disability insurance policy unexpectedly and I had to start releasing the parts that were ready way ahead of schedule.
Then again, in an ideal world I wouldn’t have a diffuse astrocytoma on my brain stem. Just… it’s not an option. Alright? Gosh.
IS THERE A TABLE OF CONTENTS OR SOMETHING?
Yep! These regularly updated links take you to each of the original Patreon posts.
True story: There’s a medium-security federal prison on I-70 in Greenville, Illinois. You can see it from Interstate 70. You can also see a sign situated in front of it that reads “If you lived in Greenville, you’d be home by now.”
“Oh my God, Dan. Did you see that?” I asked through my laughter. “Who puts a ‘you’d be home by now’ sign in front of a federal prison?”
“Why, the great citizens of Greenville, Illinois, I do reckon.”
“It makes me wonder if someone has the best sense of humor ever or if someone is uncommonly oblivious.” And then I paused reflectively for a second. “Doesn’t matter I guess. I can’t decide which would be funnier.”
We were on our way to St. Louis to see my doctor about my brain tumor, a Grade 2 astrocytoma nestled all up in my brain stem.
***
I had a full day of doctor things at Barnes-Jewish Hospital. It started off with an MRI. Then I had labs done to check my counts and make sure I was in good shape to start back up on chemotherapy, and then I had a visit with my neuro-oncologist.
The nurse who installed my IV for the MRI contrast immediately made my day. “Are you going to have other labs at the 7th floor location? If so, I can leave this IV in, and the nurses there can use it to draw blood. One stick today.”
“YASSSSSS!” I cheered. I’m a hard stick now that I’m a cancer patient. Like, my-veins-are-sentient-and-burrow-into-my-bone-marrow-at-the-scent-of-an-alcohol-swab kind of hard stick.
When it was time for the draw, the IV wouldn’t give up the goods though. In all, they stuck me five times yesterday. And that just sort of scratches the surface of the list of Things That Were Hard About Yesterday™.
My MRI appointment didn’t show up in my patient portal thingy, so I went to the wrong location. We had to walk to another zip code to get to the right place. And the sign-in process there was senseless. Requiring bouncing around on three different floors. I don’t know if y’all remember this, but walking is hard for me.
I managed to get it done without a wheelchair because I’m stubborn and had my rollator. (My legs cramped up all night long. Today I can hardly stand up and there’s a spot on my to-do list in all caps “APPLY MAGNESIUM LOTION AND SIT IN YOUR DAMN RECLINER ALL DAY.”)
The MRI itself was the best one yet. “Imagine” played on the headphones while the magnets jiggled the table and lulled me into a relaxing sleep. When I wasn’t dozing in the Skinny Tube of Loud and Screechy Noises, I was able to keep my eyes open. I am officially over all MRI fears.
Die in a tire fire, claustrophobia.
***
Despite an extremely draining six outpatient hours at the hospital, I feel good about the outcome. The MRI told the doctors that my brain tumor is still stable—a comfort considering any active treatments were postponed while we waited to figure out what was happening with the Temodar.
According to the nurse, my blood counts were “beautiful” following my treatment hiatus, meaning I’m in a good spot to resume treatment.
I don’t have to go back on the Temodar!
My doctor has prescribed a new chemotherapy pill, and this is one of those rare cases where “the evil that you know is better than the evil that you don’t know” just does not apply.
When my doctor said, “We’re very concerned about what happened to you on the Temodar,” I was so relieved.
My doctors are still listening to me and they are concerned about my quality of life. They care about me as a whole human person. I’m not just a tumor incubator with the potential to land them on the cover of Brain Tumor Slayers Monthly.
***
So here’s the plan:
My new chemotherapy is still a pill that I can take at home. No infusions.
The name of the medicine is gleostine (also called lomustine, Ceenu).
I take it for one day and have six weeks off, as opposed to the five-day regimen for Temodar.
Fatigue seems to be a certainty as far as side effects go.
One dose of chemotherapy costs $110. (That’s in addition to my monthly premium of $350 for health insurance, so here’s where I plug my YouCaring fundraiser page again.)
I will resume weekly labs to make sure my blood counts are good, or at least passable, but I can do them here in Urbana.
My doctor gave me a new script for PT/OT. I have to check with insurance to see if I can even afford it. But I’m hoping it will be possible and that it will help me get over some pain and numbness that’s overtaking the left side of my body lately.
My dexamethasone dosage is being reduced from 2 mg daily to 1 mg daily. (Fingers crossed, I can stay active but a little less hungry on this dosage. I gained another 10 pounds since my last doc visit.)
About a week after I was admitted to the hospital in St. Louis, my medical team recommended a biopsy of my tumor. So they put me face down on a surgical table for a few hours, screwed my head into a halo to stabilize things for the surgery, and took a tiny bit of the tumor for pathology.
You might wonder why they’d go through all that trouble just to not remove the damn thing. I would. I did.
The sucky thing is that the tumor was (and still is) in a precarious spot. Trying to cut it out is risky not only because of where it is, but because it’s got these tendril-like doohickies with no clear delineation where the tumor stops and the brain begins.
So they just took a little bit of the tumor, and some pathologists gave it a good look see. I’ll never, ever forget the neurosurgeon describing the procedure to me the night before as he loomed over my hospital bed.
“Basically, we’re going to cut a flap open on the back of your head, pull your neck muscles out, set them aside, take a little bit of the tumor, put stuff back where it was, and sew you back up.
“Just sign here,” he said, handing me a clipboard and a pen.
They determined that it was indeed a Grade 2 Astrocytoma. And then they sent the tissue off for Foundation One genetic testing and determined that my tumor was an IDH-1 mutant. With that info, they knew I was a good candidate for chemotherapy.
Lucky me.
What follows is a few of the juicy bits from that brain tumor biopsy:
NEUROPATHOLOGY REPORT FINAL WITH ADDENDUM Service: Neurosurgery
DIAGNOSIS: Brain, “Brain stem tumor,” Open biopsy (Includes AFR1 and AFR1-TP1) – Diffuse Astrocytoma, IDH-1 mutant, WHO Grade II (see comment) nxs/2/14/2017 18:22
Intraoperative Consultation: An intraoperative consultation was obtained and is interpreted as: Called to pick up “brain stem tumor frozen,” consisting of tan-white tissue fragments measuring 1.0 x 0.5 x 0.3 cm in aggregate. Sampled for frozen sections (AFR1) and for cytological smear preparation (AFR-TP1).
Microscopic Description and Comment: Hematoxylin and eosin stained sections of the brain stem tumor biopsy material show several small fragments of brain parenchyma involved by a diffuse glioma, showing also a few entrapped neurons and some reactive astrocytosis. Cellularity is moderate.
The neoplastic cells have relatively uniform, mildly atypical, round-to-oval nuclei with variably dense or coarse chromatin and occasional small nucleoli. Some have indistinct cytoplasm; others have perinuclear halos. Rare apoptotic bodies are noted.
Definitive mitotic figures are not appreciated. There is no evidence of microvascular proliferation, endothelial hyperplasia, intravascular thrombosis, or necrosis.
Immunohistochemistry (IHC; single antibody stain procedures) was performed on block A2 to allow for tumor classification. The tumor cells show strong diffuse cytoplasmic reactivity for IDH1 (p.R132H). ATRX expression is retained in tumor nuclei.
Reactivity for p53 stains only rare scattered tissue nuclei (<1%). IHC for K3 K27M is negative. Reactivity for proliferation marker Ki-67 (MIB-1 antibody) stains a regionally variable proportion of tissue nuclei, manually calculated in an area of estimated maximal density to be <2% (13 of 699).
Fluorescence in situ hybridization (FISH) studies (G17-758; A2) show evidence of limited polysomy 19, but no evidence of 1p19q co-deletion.
Comment: The histomorphological, immunohistochemical, and cytogenetic findings from examination of the biopsy material support the diagnosis: Diffuse Astrocytoma, IDH1-mutant, WHO Grade II.
The patient is a 36-year-old woman with history of neck pain, headaches, numbness and ingling in all four extremities, and difficulty walking. Magnetic resonance imaging on 02/04/2017 shows increased T2/FLAIR intensity, decreased T1 signal intensity, and diffuse expansion of the pons, medulla, and upper cervical spinal cord (extending down to the level of the C3 vertebral body), with internal patchy enhancement. Radiological impression: Most consistent with brainstem glioma.
Operative procedure: Suboccipital craniotomy and Stealth-guided Vertek open brain biopsy.
Specimen(s) Received: A: Brain stem tumor
Gross Description: Received is a formalin-filled container labeled “Suess, Emily A.” and “brain stem tumor frozen.” It holds a cassette (AFR1) that contains two pieces of tan-pink tissue, wrapped in tissue paper. Also within the container are 4 fragments of tan-white/tan-pink tissue measuring approximately 0.8 x 0.5 x 0.3 cm in aggregate. Wrapped. Labeled A2 and A3. Jar 0.
TECHNIQUE: Sagittal and axial T1, axial FLAIR, axial T2, axial SWI, axial DWI, and axial and coronal T1 post contrast sequences were obtained through the brain. Gadavist 9 mL was administered intravenously.
FINDINGS:
There is a T2 hyperintense fusiform expansile mass involving the entirety of the medulla and extending inferiorly into the upper cervical spine spinal cord to at least the C2-C3 level. The mass extends superiorly to involve the inferior dorsal pons including the right facial colliculus. The mass measures approximately 6.0 cm x 3.0 cm x 2.7 cm (CC, TV, AP). The mass demonstrates predominantly facilitated diffusion and little to no enhancement. Because of the expansile nature of the mass, the cisterna magna and subarachnoid space in the upper cervical spinal canal are effaced. The V4 segments of the vertebral arteries are draped along the lateral aspects of the mass.
The ventricles are normal in size and position. The supratentorial brain parenchyma is normal in signal intensity. There is no acute infarct or intracranial hemorrhage. No enhancing lesions are present in the supratentorial brain. The major intracranial flow voids are patent.
The orbits are normal. There is a small mucous retention cyst in the inferior left maxillary sinus. The mastoid air cells are clear.
IMPRESSION:
Large infiltrative astrocytoma involving the medulla, upper cervical spinal cord, and inferior dorsal pons as described above. The inferior extent of the tumor is demonstrated to better advantage on the cervical spinal MRI performed today.
Neurosurgical consultation is recommended. REPORT FLAGGED FOR PROVIDER ATTENTION.
MRI CERVICAL SPINE WITH AND WITHOUT CON 02/02/2017 16:00 —————————————————————————- COMPARISON: None
INDICATION: Weakness, clonus, abnormal gait
Technique: Sagittal and axial T1, sagittal and axial T2, sagittal STIR, axial 3-D GRE, and sagittal and axial T1 postcontrast sequences were obtained through the cervical spine. Gadavist 9 mL was administered intravenously.
FINDINGS:
A 6.2 cm x 3.0 cm x 2.7 cm (CC, AP, TV) infiltrative intra-axial and intramedullary mass expands the medulla and upper cervical spinal cord resulting in effacement of the subarachnoid space from the cisterna magna to the level of C2. The mass extends from the pontomedullary junction to the C2-C3 level and demonstrates T2 hyperintensity and T1 hypointensity. A few subtle wispy areas of enhancement are suspected, but the majority of mass does not enhance. The mid and lower cervical spinal cord is normal in signal and morphology.
The cervical vertebral bodies are normal in signal, height, and alignment. The craniocervical junction is intact. The prevertebral soft tissues are normal.
C2-C3: The intervertebral disc is normal.
C3-C4: There is mild left uncovertebral joint hypertrophy without central spinal canal stenosis or significant foraminal stenosis.
C4-C5: There is a small central disc protrusion without central spinal canal stenosis or foraminal stenosis.
C5-C6: A broad-based central disc osteophyte complex causes mild central spinal canal stenosis. Uncovertebral joint hypertrophy causes mild left foraminal stenosis.
C6-C7: There is disc space narrowing, a mild diffuse disc osteophyte complex, mild uncovertebral joint hypertrophy, and mild Modic type I endplate change. There is mild central spinal canal stenosis. There is no foraminal stenosis.
C7-T1: The intervertebral disc is normal.
IMPRESSION:
1. 6.2 cm x 3.0 cm T2 hyperintense fusiform, expansile intramedullary mass involving the upper cervical spinal cord and medulla consistent with a brainstem and spinal cord astrocytoma. 2. Mild cervical degenerative disc disease including mild central spinal canal stenosis at C5-C6 and C6-C7 as detailed above.
I start tomorrow morning bright and early. Taking a picture of this was easier than explaining the details of my treatment plan. Ask questions if you got ’em though.
