All I’ve got are some random updates.
I’m LegXercise-ing today, but for a very short time. I have this instinctive tendency to curl up in the fetal position all the time due to anxiety, and now that I have a wound, it really takes willpower to open up physically. Plus it’s just good practice to keep stuff circulating.
I have this thing where I must try limited edition Oreos, and Dan got me these Space Dunk things. When I first heard about them, I was like “yuck.” But you know, I tried them for science (and because life is not terribly exciting right now). I’m a huge fan of the Pop Rocks rattling around in my head.
I finally pooped. Please clap. I had to stop all pain meds, so I’ve traded off one thing for another, but that’s the easiest way I can explain just how awful yesterday was for me.
The first test result has come back on my lymph node biopsy: nothing grew in the petri dish, but I have an excessive amount of red and white blood cells. So basically? No new information yet.
It’s Taco Tuesday. Celebrate accordingly.
Waterproof skin protection is cheaper if you type “tattoo” in the search bar. (They’ll nail you if try to buy it as a medical supply.) Bastards.
I had follow-up appointments with all of my brain tumor doctors earlier this week at Siteman Cancer Center. Posting a bare-bones update so I can keep people informed but not expend too much energy.
I’m tired, guys.
I got an all-clear as far as recovery from February’s brain biospy. I’m still frustrated with my progress, because I want to be perfect. But doctor is very happy with my progress and says I don’t have to go back to him unless something comes up. As a part of my medical team, he will continue to monitor my periodic MRIs.
The second dose of chemo (gleostine) will be higher than the first. Since I had the allergy to Temodar, he didn’t want to start me off with too high a dose of the new chemo and cause me additional problems. Things went well and my blood counts were decent, so my next round will be higher. I have the pills in-hand, but don’t plan to take them until Monday.
He’s given me the go-ahead to try tapering off of dexamethasone again with some flexibility to do the taper however my body can handle it. His only admonition was to go back on it immediately if I had any problems. No worries there. I’m not keen on ER visits.
I asked him about getting my flu shot this year, and he gave me his blessing with a caveat: get the shot on week 5 of my chemo cycle when my counts are the highest and my body is at its toughest.
*** Special Request: If you’re able, get your flu shot. Yes, even if you feel like you don’t need it. You are helping to protect people like me with compromised immune systems stay as healthy as possible. ***
He only needs to see me every other MRI, assuming my scans continue to look good.
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.
What follows is a few of the juicy bits from that brain tumor biopsy:
FINAL WITH ADDENDUM
Brain, “Brain stem tumor,” Open biopsy (Includes AFR1 and AFR1-TP1)
– Diffuse Astrocytoma, IDH-1 mutant, WHO Grade II (see comment)
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.
A: Brain stem tumor
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.
Getting nostalgic as I near the end of radiation. These pictures fascinate me. I don’t look like the same person and I don’t feel like either look like me! First one dated 2/13, the day I was discharged from the hospital and 4 days post-tumor biopsy. Second photo from 3/6, my first day of radiation therapy.