Brain Tumor

Misdiagnosis: From Fibromyalgia to Brain Tumor

16832198_10102660054845834_6014347965752901571_nWhew! The past 72 hours have been utter shit for me. I’d explain why, but I’m going to just wave my Tumor! sign and leave it at that. There’s something else I want to write about now.

Did you know that May is Brain Cancer Awareness Month and Fibromyalgia Awareness Month? (Actually, May is the awareness month for a lot of things, but these two things have been just about my entire life since October 2014, so they’re getting top billing on my blog this May Day.)

I mentioned in a previous post that I believe fibromyalgia was a misdiagnosis for me as opposed to a comorbidity. As I have discussed many times with family and friends, I am mostly overjoyed to have an accurate diagnosis and a real plan to get better.


There’s a special kind of emotional baggage I picked up on this path, and the only way I know to heal from it is to put it out in the universe by sharing it on my blog—where my family, friends, and even complete strangers get to read some of my most intimate thoughts.

I have no qualms about oversharing when it comes to my well-being.

So here’s the deal. On February 2, I had fibromyalgia. Then on February 3, I had a six-centimeter tumor on my brain stem.

On February 2 the general consensus among my doctors was that I wasn’t eating right or exercising enough. If I were, I’d experience improvement and maybe even remission of some of my symptoms.

On February 3 the general consensus among my doctors was “Holy, shit. You shouldn’t be able to do that” or “No wonder your body can’t walk, breathe, sleep, digest, or stabilize your heart rate and blood pressure like a healthy person.”

At first I was like, damn I am one tough cookie.

And then I was like, wait just a goddamn minute here.

I want to point out that from a purely physical experience, there was no discernible difference for me between February 2 to February 3*—even though in that 24 hours, my list of symptoms was suddenly more than validated.

Medical professionals (not speaking of specific doctors right now, just medical pros as a community) who were previously dismissive of my pain were suddenly losing their shit over how believable my reports of chronic pain and disability were.

And this is a point that I really want to drive home, so I’m going to repeat it:

The physical experience of living inside this tired, broken body didn’t change one iota for me in that time.

Still, somehow I went from being a whining, complaining exaggerator with two X-chromosomes to a human being who really had been experiencing unrelenting level-eight pain for TWO AND A HALF FUCKING YEARS.


(My Spoonies are grabbing tissues right now, they are empathizing so hard.)

(Others might not quite understand just how much emotional damage was done. That’s okay.)

It makes me angry that I wasn’t taken seriously. It makes me sad that treatment (and possibly relief) could have come just a little bit sooner for me, but instead I spent months homebound.

The lazy-ass rheumatologist that was a little too eager to diagnose me with fibromyalgia in 2014 fought me over my symptoms and complaints of weight gain, insisting that I wasn’t exercising enough.

When I told him that I’d been tracking my steps, walking to and from work, walking three laps at the park after work every night, and using my FitDesk and hand weights at home and was experiencing physical decline instead of improvement, his response was “Well, you need to start out slower and build up.”


That’s all the motherfucker had. I must have been doing it wrong.

Now that I have proof of this brain tumor and I’m recovering from surgery, chemotherapy, and radiation therapy, I hear admonishments not to “overdo” when I tell the doctors and nurses that I’m walking without mobility aids or putting in 30 minutes (on the lowest resistance setting, for the love of god) on my FitDesk as I try to recover.

If you don’t immediately know why both of these experiences fill me with boiling rage, I’ll tell you: NEITHER VALIDATES THAT I KNOW THE PHYSICAL LIMITS OF MY OWN DAMN BODY.

And yeah, the anger that comes with that weasels its way into my waking hours from time to time. You got a problem with that?

*I implore you to think about this before you accuse someone with a fibromylagia diagnosis of being an attention-seeker, a pill popper, or a conjurer of fake maladies.

Brain Tumor

Everything Hurts but I’m Not Dying

emilyThis morning I vacuumed. Well, sort of. I rolled our heavy yellow Hoover over near the living room window where Carl the Rescue Ficus™ resides during the winter months and sucked up the brown, crusty leaves he’d shed.

Just yesterday, Dan had moved him to the back yard. (That’s where Carl summers.) And the 30-something ficus with the braided trunk customarily dropped his jankiest leaves all across the living room floor in protest. (Carl doesn’t like change.)

The dried up leaves bugged me, so I vacuumed.

But when I say “I vacummed” I don’t mean to imply that I was standing upright and dancing across the living room floor like some ’50s housewife in a floofy skirt and heels. Nope. I was sitting in a rocking chair, wearing the same pajamas I’d had on for three days, stabbing individual ficus leaves with the hose attachment. Because (as most of you already know) I have a brain tumor, am recovering from brain surgery, and am waiting for the side effects of my chemotherapy and radiation treatments to subside.

But wheeling that vacuum across the living room and sucking a couple dozen leaves off the floor would be an accomplishment for me even before I started collecting medical procedures at Barnes-Jewish Hospital in February, and if you bear with me I’ll tell you why.


A few days before I found out about the brain tumor, I had a bit of a breakdown at home. Some pretty significant life changes were headed my way, and I felt incapable. I walked away from my laptop one evening and went full metal drama queen on the bed. Dan came to check on me.

“I can’t do this,” I said to him. “And I don’t mean that like I’m overwhelmed right now and tomorrow I’ll get up like I always do and just figure it out. I’m physically incapable of walking. The pain is too much of a distraction to think. I can’t remember the last time I slept.” I started sobbing.

“Okay, well. What do we do? I mean, we’ll figure something out.” Dan tried to come up with a solution that would calm me. But nothing immediately sprung to mind.

“I’m just done. There is nothing left. I haven’t possessed a proper spoon in months.”


What I didn’t say was that I had this sickening feeling in the pit of my stomach that I was dying. The next day it would be followed by the squeezing sensation I would assume was an “MS hug.”

I would be wrong about that.


As luck would have it, I had an appointment on the calendar to see my primary physician on January 27. I can’t even tell you why I made the appointment in the first place. I’m guessing some kind of follow-up to something or other. It had been on the books long enough that I didn’t even remember scheduling it.

Dan went to the appointment with me. I was emotionally worn down for one thing. For another, I needed him to push me in a transport wheelchair to the exam room. My physical disability was so severe, I couldn’t make it on my own.

That’s the day Dr. S put “gait abnormalities, clonus, and weakness” in my chart before ordering MRIs of my brain and cervical spine.


I guess what I’m trying to say is that this little vacuuming challenge I completed this morning is a BFD. I’m physically capable of doing more things today than I was capable of doing even before brain surgeons and radiation oncologists started slicing and zapping me.

And though there are a lot of things I still can’t do, I don’t feel like I’m dying anymore.


Brain Tumor

Emily Answers Your Brain Tumor Related FAQs

recoveryOMG! I just heard. How are you?

The answer to this one changes every 5 to 30 seconds. You know that graphic about recovery not being a straight line? That is applicable to just about everything in life, and medical procedures are no exception. I’m glad to report that after 71 days away, I am at home in Urbana. The overall trend is toward “better and better” but I have my days where it seems like everything sucks and I’m taking steps backward. I’m not shy about griping during those moments. I promise to let you know when things are bad and I need a little cheerleading.

Are you done with radiation and chemotherapy?

Sort of? The radiation is done unless future MRIs indicate there’s a need to zap the tumor again. Chemotherapy and I are, as Ross might say, on a break. There will be more Temodar—brain cancer chemotherapy in convenient pill form—in my future, but it will only be once a week every month. (One week on, three weeks off, lather, rinse, repeat.)

I imagine that my body will tolerate that schedule much better than the initial chemotherapy regimen, which was every freaking day for five weeks. Right now, doctors are saying to expect to do the one-week-a-month plan for 6 to 12 more months. Actual duration will depend on how the tumor responds and how the rest of my body tolerates continued treatments. You know, my mileage may vary and stuff.

I want to help. What can I do?

  • Tell me jokes. Laughter is a great distraction.
  • Carry on about your business like things are normal. When someone tweets how miserable their allergies are making them feel, I am not thinking “Yeah, but I have cancer. Count your blessings.” Rather I am thinking, “Better you than me, sucker!”
  • Donate to my YouCaring fundraiser. But only if you can. My medical bills are piling up, and as of today (4/24/17) I’m preparing for an appeals battle with my health insurance provider. They have denied a claim that exceeds $100,000 for the genetic testing that determined the best treatment course for my tumor. I’m not adjusting my fundraising goal, however, until I know for sure I’ve been screwed. I could win the appeal. Right?

What about the Fibromylagia diagnosis?

It’s still on my medical records as a thing. But my opinion, knowing what I know now, is that the rheumatologist who diagnosed me with it in late 2014 was lazy and just fucking WRONG. My thoughts on this topic are pretty complex, however, and I plan to do a more in-depth post of my experience. For now, just know that if you troll or harass anyone diagnosed with fibro I will cut you. It’s real.

You went to St. Louis for treatment?

Yes, at the recommendation of my primary physician (I will praise her more in a future post) I went to Barnes-Jewish Hospital for formal diagnosis and treatment. The hospital campus includes Washington University Physicians and Siteman Cancer Center. And every one of the people I was in contact with there was absolutely phenomenal—ER admissions staff, nurses, doctors, transport staff, nurse assistants, more doctors, residents, interns, food and nutrition employees, housekeeping, valet staff, radiation oncology techs, MRI techs, CT techs. I am seriously getting a little teary thinking about how well I was treated and how much confidence I had in the people taking care of me. I don’t know any of their salaries, but I know that none of them are making what they are worth.


Brain Tumor

Probably More Than You Want to Know about My Brain Tumor

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.

A couple of days after surgery. Seventeen staples. The incision is about 3.5 inches long.

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:

Service: Neurosurgery

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).

AFR1/AFR-TP1: Brain stem tumor frozen
– Diffuse glioma
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.
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.
Brain Tumor

My First MRI Results

These are the MRI reports my primary physician had in-hand when she broke the news to me on February 3, 2017 at 1:30 p.m. that I had a brain tumor.

I’ll write more about how that experience went and how it affected me later. But for now, here’s the medical science-y stuff.

That’s a wiki commons image down there and not an actual image of my gray matter.



INDICATION: Weakness, clonus, abnormal gait

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.


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.


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.

Gray 111 - Vertebral column-coloured labels

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.


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.


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.


Brain Tumor

Rash Update

I thought I’d made some gains yesterday in my war against the mysterious rash, but I woke up this morning to find it had re-covered all the places where it had receded. Since it and my prophylactic antibiotic, Bactrim, seem to be on an every-other-day schedule, nurse is saying to stop it and see if the rash goes away. If it does, the doctor will prescribe something else.

I’m so over taking medicine, guys. Words cannot express. But my lymphocytes were even lower this week, so I’m guessing refusing to take my antibiotics would get me a lecture or two.

This concludes week one of my cancer treatment vacation. Not at all how I’d imagined it.


Cancer is Complicated

Something has given me an itchy rash from hell.

You know you’re in for a medically challenging day when your oncologist wants to take you off a drug you’ve never been prescribed and have never taken because it’s been known to cause a rash… and try a different one in its place. And then they send that Rx to a pharmacy 2.5 hours away even after you gave them the home pharmacy info.

::giant sigh::