I have been terrible with up dates, I know.
“hey Xun….whatcha doin? How’s the brain? Seizures? What’s the little fuuuuhhhnny thing doing in there anyway?”
Well, What I DO know is that
Percival is still hanging around. I have images from this year’s scan that were done on Wednesday, June 7.
Good news(ish): He IS still there and not like the size of a grapefruit, and if he’s grown, it’s not much. At least I don’t think so….
Xunnie, a deviated septum, Percival (the kid loves this one with the eyeballs….)
So, not a lot to report on just yet. But I do think I have a demon in my brain….
Should I be worried? Anybody got any Holy Water hanging around I could maybe borrow for an experiment? =D (Should we name the demon?)
I am hoping to get the report for this MRI in the next few days. I did explain that I was waking up feeling like the bed was shaking a couple of times, and that I had managed to scratch my face on in my sleep. Dysphasia ruled neurologic in origin, aphasia as well, EEG better than the last one, minor changes to my meds.
So….yeah, updates on Percival and me in a couple of days hopefully. Until then…..
we start with what’s been stuck in my head for 3 days….
Along with stuff in the back of my head, on my playlists, haunting me….
There are a lot of memories intertwined with allllllll of the music on my phone, my hard drive, and hell even still the CDs I shepp around!
Xun = Music, Music IS Xun.
In June of 2014 (2 years ago), I was diagnosed with a left trigeminal meningioma and spent lots of time in scanners (CTs, MRIs, you name it…) before being sent up to Georgetown for a week of stereotactic radiosurgery (aka CyberKnife radiation). It’s like having radiation, but it’s sort of a surgery too. Mostly, it’s just like having 30 radiation sessions in a week.
I still have Irkle…
So named because he doesn’t do much except be irksome and irritating.
But he’s stable. Mostly.
Georgetown kicked me back to my local neurologist because Irkle is so close to my brain stem he’s inoperable. So there’s not much to do but keep an eye on him.
And burn my mask. Which I did last August at the one year mark of surviving radiation.
So, two years of scans and meds and many, many doctors later, two of my doctors decided I need a repeat EEG. Not fun, but whatever, because any seizure activity I seem to have seems more absence seizure that flop-around-like-a-fish seizure. And Irkle’s not giving up much info.
So today was EEG day…
The worst part about it is washing all the crap out of my hair after. And the hyperventilating part, but today’s wasn’t so awful. And I had a really nice tech.
Okie dokie…..all wired for sound and picture. Time for the pretty lights and the heavy breathing.
So, now we see if my brain is doing crazy brain stuff. Results tbd.
Soooooo, if you’ve read the blog at all this year, you know it’s been pretty crazy-busy in Wonderland. We’ve spent the last 6 months building a house (or, more accurately: having a house built, not like swinging the hammer and hanging the drywall….Xunnie loathes sweating). And in the midst of trying to be somewhat productive adults, juggling day to day life, hubs retiring out of the military and transitioning to a civilian job, me homescholling the kidlet, our 14 year old poochie passing away, and just the general insanity of the average life in America, I have also been being treated for an inoperable meningioma.
It is very safe to say we’ve had a lot on our plate this year. But I go back up to Georgetown next week for a follow-up. I have a brain MRI scheduled, then an appointment with my radiation oncologist, and then I am finishing up with a check in with the neurosurgeon on my case (the one that took one look at my scans and declared “I am not going in after that!” and promptly handed me off to radiation oncology, yeah him. Seriously. There has to be some sort of land speed record with how quickly he handed my case off to Dr. Collins*). We’re hoping to see that the crazy-new-insanely-high doses of radiation have shrunk the tumor. Or, in the words of my mom: shrunk it and killed it.
Also, we’re 2 weeks out from closing on said built house. So, yeah, we’re also planning a move. Which means that the house we’re currently renting needs to be rented to a new tenant. Our land-lady has been scheduling people to come see the house, which we’re fine with most of the time. But last week there was a little bit of an issue with us not responding quick enough to her request to show the house and we got an email that lead us to believe she was being a bit snippy about the whole thing. So after some discussion between hubs and I, he emailed her back and explained that we have all of the normal busy on our plate, and that I have also been being treated for my brain tumor. Hubs (Bless his heart) is just now getting used to telling people about my tumor, so he had not mentioned that to our land-lady thus far.
Predictably she emailed back and expressed how sorry she was to hear that and “if you guys need anything at all, please call me!”. Okie-dokie, dully noted, thank you.
Well, yesterday she brought a very nice young couple by to check out the house and as she walked in the door, the first thing she did was come over to be and apologize. I smiled and told her it was okay. She teared up 3 different times as she asked me about treatment and how I was. I assured her I was strong and would be okay, until finally I got up and hugged her because I didn’t know what else to do.
I guess I’m just not used to someone that barely knows me reacting so….profoundly? All I could think was “she’s taking this almost as bad as my Mom“. (And “gee, lady, for all you know I spend my spare time eating small children.”) I kept assuring her that I was strong, I’d be okay (lady, please don’t cry!), I’m an only child, I’ve had 6 surgeries and bunches of other things I’ve survived. I am going to be okay.
It was just really weird.
She went on and on about how much she appreciated us taking such good care of her house and “I wish you guys didn’t have to move out!”. The couple that had come to look at the house were just standing there, so I finally said “Well, these people don’t really look like the kind of people that would trash your house…..” (nervous chuckle…..).
“No, no”, he says “just one kegger a week, I swear!”. Nervous giggles all around. Shift, shift. “Well. We should really get going.”
Alrighty, everyone out the door. I turn to hubs, “WHAT was that?!” Holy crap. Anybody else have any crazy stories about sharing news about your tumors?
*But it’s all fine with me. Radiation treatment means not shaving my head and having brain surgery!
My life has changed is the last 45 days. Completely, drastically, and permanently.
In 2001, I had the kind of year that people write books about. The kind of year nobody would believe if you shared the story at a party. I had the kind of year I’ve never written the book about for fear nobody would believe me. In 2001, I was the 1% that almost died due to pregnancy complications, and I lost a baby girl. My husband’s Grandma passed away from liver cancer. We got audited by the IRS (yep, that really happens) and ended up paying $4000. And all of this happened as we were moving from Hawaii to Florida (remember Hubs was Active Duty). And then my house got hit by lightening. It’s was the kind of year that we could only laugh and declare “bring it on!”. It was either that or cry.
Somehow, in the magic number of 13 years later, we’re having another year that I don’t think I’ll ever be able to write a book about because it’s so absurd, so unbelievable that I don’t even think I could pass it off as fiction. I have several people in my life that are always telling me to write a book, and I really want to share at least some of my story, if for no other reason than to let someone else know they aren’t the only one in the 1%, but I keep saying no one would believe me.
2014 is shaping up to be a strange year, and I knew it would be a year of transition, but I never counted on the absurdity that is my life invading.
In April I got a referral from my pain specialists to a neurosurgeon because I kept complaining of more pain and more headaches. That particular doctor hasn’t really ended up being of much use….but I’m getting ahead of myself.
He decided that I wasn’t “surgical”, ordered a brain MRI (mostly to shut me up), and moved on. It took me 6 weeks to get everyone of the same page (referral, insurance, and hospital where the MRI was going to be). I finally had my first MRI on June 9. In the middle of getting the needed referrals and appointments for the MRI, my pain specialist then referred me to a neurologist because I have migraines and the arthritis in my neck causes a lot of headaches. I ended up having my first appointment with the neurologist on June 13 and she was able to pull up my MRI results as part of my intake with her.
She did a neuro exam on me, establishing me as a patient, and then informed me that my MRI had an abnormality on it and I would need a second MRI with contrast and a particular set of views on a specific area of my brain. For those of you playing along at home, it’s called IAC protocol. I had the referral and the appointment within the hour.
Now, in the middle of everything else, between phone calls to the insurance company and raising hell with the doctor’s office for the referral I needed, we decided to buy a house. Hubs just retired last October from 24 years of Active Duty and I’ve waited a long time to have my own house. No more rentals or living in Navy housing….we finally get our own home. After spending a couple of months looking through ads and walking through a few houses that were NOT going to be worth what we paid, we decided to jump in and have a house built. Because of where we live, it’s pretty much the same amount of money to build a house in one of the new developments as it is to buy a 10-20 year old house, so we’re building a house.
On May 31, our 14 year old Border Collie passed away. In the midst of life, we are in death. We brought her home at 7 weeks old and almost exactly 14 years later we said goodbye to her. She’ll be in our new home as part of a tree we’ll plant with her ashes in the Spring.
Fast forward back to the second MRI, which happened much quicker than the first one. I had the referral and appointment within an hour, and my scan was one week after my appointment with the neurologist, on June 20.
I spent a week chasing down the results because apparently everyone that changes practices (my PCM) or goes on vacation (everyone else!!) does so at the end of June. When I finally got my results, the report confirmed that I have a meningioma. I have the kind of brain tumor that only about 6500 people a year are diagnosed with, and mine happens to be on the underside of the brain, near the brain stem, sitting up against the 5th cranial nerve.
The next step was an EEG. Which, by the way, not as much fun as you think it might be. It’s just like in the movies with all the wires on your scalp and the lines across the screen, but the flashing lights and hyperventilating….no so much fun.
I got the EEG result today (which is what inspired this incredibly long blog) and I have “intermittent bilateral frontal spike discharge”, which I *think* means all those times that I forget the word I want in the middle of a sentence and I sound like an idiot….yeah, it appears it’s a type of seizure. Or something.
So I’m off to the neurosurgeon tomorrow. The incredible thing about all of this is that I live in a part of the country that has some really great doctors. My neurosurgeon, the one that I’m taking 2 discs of MRI images and reports for each and my EEG report, is the head of neurosurgery at Georgetown University. I guess if you have a brain tumor, this is the place to live.
But….the whole point of this ridiculously long and rambling story is that inside of 30 days this summer: we signed a contract to have a house built, my dog died, and I got diagnosed with a brain tumor.
You can’t make this stuff up.
(I’m trying to blog my way through this process so hopefully someone else that’s going through diagnosis and treatment for a meningioma has some info and some hope!)
My life has taken on a surreal quality. You know that quote that says “Life has a way of testing you by everything happening at once, or by nothing happening”? I seems to have trainwrecked into *everything* happening in pretty short order.
The whole thing started back in March when I mentioned to my pain management doc that my neck wasn’t responding to the latest “shots”. (Decipher as: I have Degenerative Disc Disease in C5 & C6 in my spine and the procedure to “burn” the nerve in November wasn’t as successful as I would have liked) so she referred me to a neurosurgeon to see if there were any surgical options. He looked at my latest scans and examined me and decreed that there wasn’t much he could do surgically for my neck, but ordered a brain MRI and moved on.
It took 6 weeks for me to convince all the necessary parties to get their ducks in a row, referral acquired, appointment made….and finally I had a brain MRI at the end of May. In the midst of all of the fun, I was also following up and getting a referral to a neurologist. After 6 weeks of chasing down various parties and information, everything just sort of came together in the same week, two weeks ago.
I got in to see the neurologist who spent 2 hours going over everything, completing a neuro exam, and reviewing my file, symptoms, & medications. Finally she pulled up the report from my MRI and that’s when everything started happening at a quicker than normal pace. (If you have *any* experience with doctors, tests, etc you can imagine what the normal pace of it all is, and recognize when it speeds up.)
My MRI had come back with an abnormality in it. The radiologist spotted something called a “meningioma” and recommended a second MRI with contrast and ” I A C Protocol”. I had the referral and appointment for the second MRI within the hour.
I spent the next week learning what a meningioma is. You can follow the link to learn more, but basically it’s a cluster of cells behaving badly and it’s found on the lining of the brain. It’s thrown in with the rest of the brain tumors, but it’s not technically a brain tumor because it’s not comprised of brain tissue. I take a lot of pride in being an informed patient and in my research skills, so I have spent the last few weeks learning all about a new medical specialty.
*Quick side note: in the middle of ALL of this, hubs and I went under contract to have a house build and my 14 year old Border Collie passed away….(meaning inside of 30 days….contract to build a house, poochie passes, and I get diagnosed with a brain tumor, hellava year!)
So….pant, pant….I finally get to the point of it all. Ten days ago I went in for my second MRI with contrast and doc’s orders for a couple of specific views. I have spent the last week chasing down the report. See anything …..interesting?
I got a hold of the report today, and very shortly after the nurse from my neurologist called. That little white spot in the middle, on the left? That’s my meningioma. It would appear that I have a 1.5 cm long x 5-6 mm thick meninioma sitting on my left fifth cranial nerve and my next step is to have it surgically removed.
These are 3 of the 300+ pictures from my last scan and it shows the tumor (or as it’s occasionally referred to, lesion) on 3 levels of the scan and indicates that it’s pushing up against one of the 12 cranial nerves. The fifth one to be exact. (The link up top explains what that particular nerve does).
So, all of a sudden my life includes neurosurgeons and information on something only about 6500 people in the US are diagnosed with annually. When you take notice of the fact that the tumor is on the fifth cranial nerve, that number drops to 0.2% of diagnosis each year.
The good news is I finally get to take something to my doctors that they can identify and (hopefully) cure. The interesting news is that I have still found a way to be a rare case. And the less than good news is that I’m looking at brain surgery very soon. I’m going to do my best to document and share as much of the journey as possible. I’m finding a lot of info, hope, and inspiration in other stories that have already been through this and I’m hoping to do that for someone else.