It’s been about 10 months since I was diagnosed and almost 8 months since radiation. So I’m closing in on the first year mark of having been diagnosed, treated, and now living with a brain tumor. My last set of scans showed no change post treatment to the tumor. The good news is there wasn’t any new tumors and it hadn’t grown. The….not-as-good-news was that it is still there and has not shrunk.
With all that in mind, the fact remains that I am still living with a brain tumor. I begin this blog with those facts because I’m struggling with the idea that I seem to be the last one in my life (at least in my close circle) to hold on to those truths. It feels like most of the people in my life see it as “Okay, you’re diagnosed, you went through treatment, and we’re on the other side”. But I don’t feel anything like that. I still feel like it’s me and my tumor. I’m still dealing with “is this damn thing going to kill me? Or take away my sight or my hearing?”
I’m still on a lot of meds. More, in fact, than I was pre-tumor. Extended pain relief, break through pain relief, muscle relaxers, sleep meds, allergy meds, thyroid meds, and hell….let’s throw in some anti-nausea meds and migraine meds.
Oh, and vitamin D, melatonin, flonase, zyrtec, and some benedryl for good measure. This is actually not all of my meds and scripts. (medications and prescriptions for all you non-spoonie types.) Like I said, I am on a lot of medication. I fill 6 scripts monthly, 3 more as needed, and I throw in some over the counter allergy meds and supplements because my vitamin D, potassium, and melatonin levels like to do whatever they want.
I know that I am basically on end stage doses of pain meds. I’m on the kind of pain meds and the doses you don’t come off of. I see my pain specialist more than I see my primary care or any of my other specialists. I had to crack up when I went to see her the first time after treatment. She walked in to the room, looked at her laptop, and then at me and said “I thought your head would be shaved!”. I chuckled and replied “yep, me too, but we’re not there yet”.
I just got allllll the grey I’ve acquired from radiation (did you know radiation treatment turns your hair grey….well, WHITE in my case?) covered back up to my usual red.
My hair dresser, who has seen my hair grow up from a pixie cut for the last 4 years, asked me how long I was going to grow it. I told her I’d see if I could get it down to my waist for the first time in 20+ years, but in my head it was “As long as I can until they shave my head for surgery”. I’m not scared. I’ll dye it pink and spike it up.
I don’t know if surgery is an option or what’s next. My memory is better, and it’s been a year since I fell down the stairs (knock on wood!), but the twitches and shocks I occasionally get still pop up. My family and friends want to make plans and my mom wants to make travel plans, but I feel like I should get another set of scans before I make any travel plans.
I don’t know what’s coming this year, and I’m reluctant to make long term plans. It’s still me and my tumor…..
Is anyone out there following Grey’s Anatomy this season?
I love Grey’s. I’ve watched it from the very first episode to the newest one more times than I can count. Meredith and Cristina are my people. I find comfort among the characters that have become like friends to me when the pain gets to be too much in my own life. I cry over their losses and I feel the joy for the weddings, births, and accomplishments.
I fell in love with Mer,and George, and Dr McDreamy. I laid under the Christmas tree in season 2 and watched the lights. I smiled at the house of candles and bawled when George died. I danced it out when Cristina left. I watched Derek make the impossible possible and remove an incredible spinal tumor.
Episode after episode, season after season…these are my favorite people and a little bit of the narrative of my life.
Grey’s is my comfort food for my soul. It doesn’t matter if I recovering from a surgery, or a procedure, a flare, or just a really crappy day. I settle into the couch, pop on Grey’s, and disappear into Seattle for awhile. For me, it’s almost as good as any painkiller, and it sure as hell helps the pain meds I do take.
But: has anyone been following this season’s story line about Dr. Nicole Herman (Geena Davis) and her brain tumor. This one has hit home for me. I did those scans, I talked to neurologists, neurosurgeons, radiation oncologists, and a whole lot of nurses, interns, tech, and support staff as I have made my way through my journey with a brain tumor so far.
I went through the radiation they showed on the show. I still have my mask and I totally understand why she giggled as she burnt hers. That kind of radiation is hard, and exhausting, and you feel like crap. Every time they showed her being strapped down, I nodded at the t.v. Yep, been there, did THAT!
And now I’m at the part where we (the doctors, me, and my family) all weigh the options. The radiation does not appear to have worked. There’s been no change in my tumor, so is my next step brain surgery? Is that even an option for me?
Scans showed it was time for her, so they pulled the trigger, and prepped her for surgery. I got it. Twisting my fingers, I watched it unfold. They put her under and opened her up and I felt it like a punch to my chest. The fear….the anxiety….the hope.
I watched art imitate life, and this time it was a story I can understand on a deeply personal level. Do we go for surgery if my next set of scans show no change in my tumor? Or worse, if it has grown?
I don’t know. But I do know, just like in Grey Sloan Memorial, I have world class surgeons up at Georgetown if surgery becomes the next thing.
I don’t know what’s next, but I do know it’s comforting to see my favorite show with my favorite people on it imitating something real, something in my life.
It’s been a couple of days since I finished my week long adventures in the big city. I guess if you gotta have something rare and crazy like the kind of brain tumor I have, it’s a good thing I live in a part of the country that has some of the best medical resources and newest research centers. Hopkins, Georgetown, National Children’s, Bethesda….we have some of the best medicine available.
When I called my mom, who lives on the West Coast, and told her I needed treatment for a rare, inoperable brain tumor, her and her brother (my uncle) both immediately responded with “Do we need to fly her out here to UC Davis or Stanford for treatment?”. (Mostly my uncle’s thoughts.) I had to laugh and I assured her that “we don’t burn herbs or do rain dances, but I’m pretty sure we can pull off some decent medicine out here on the East Coast!”.
So, in pretty short order, tests were run and treatment options were weighed. Radiation for the brain, particularly if the tumor is near the brain stem, doesn’t always feel like the best long term option, but with some of the newest (as in recently FDA approved) machines and guidance systems, it can be the only option.
I always seem to be just ahead of the curve for the biggest medical issues a person can face, but that’s another blog.
Any who….now that I’ve survived 5 days and 5 treatments of radiation in the brain, and had a couple of days to recover, I thought I’d share a little of the experience.
Day 1: This is the day we sat down with the doc and discussed my “case”. He explained the dose of radiation and how, because of the location of my tumor, he had “sat with my case” (i.e.: had a meeting with a team of neurosurgeons, neurologists, oncologists, and his department of radiation oncology) and decided to back the dose off to 90% of what the accepted safe level of radiation near the brain stem was. He explained how the treatment works and answered questions. He explained that technically my tumor isn’t “inoperable” because if the neurosurgeon had to go in after it, he could. But there would always be some kind of permanent damage from that deep of a surgery. So, we’re gonna stay with inoperable.
Then we head into the treatment room and Doc hands me off to the tech. This is the table I’d be laying on for about an hour a day, give or take re positioning needs.
But at least I got something pretty to look at, and they played music for me. Most of the time, I just closed my eyes and tried to meditate.
Day 2: Hubs and I finally figured out the parking and arrival times (for the most part, it is DC) and I check in for day 2 of treatment. “How did you do last night?”. I felt a little woozy and tired and for some reason my voice was completely gone after treatment. But it could have been left over from me yelling my damn head off at the 3 Doors Down concert the weekend before. Or it could have been from our crazy (crappy) hotel room on JBAB and the humidity. Or it could have been because I’m allergic to frickin everything and we’re at the end of the Summer season.
Oh, and this is the door to the room I was being treated in. Wait, you guys all leave the room and close me in behind this thing?? What the hell is going on in here????
Day 3, day 4, and day 5: I typically came back to the hotel room after treatment and slept for an hour or two. Night 3/day 4 was a little tough and the doc was watching me for swelling in the brain, but I wouldn’t let him put me on steroids. I was prepared with headache meds, nausea meds, and my migraine meds and I figured it if got out of control even with all of those, then I might consider it.
Every day was pretty much the same. I’d come in, recite my full name and birth date so they could confirm they weren’t irradiating the wrong patient. Up on the table, I’d ask for a sheet to cover me because I was laying still for an hour in the hospital and one of the biggest symptoms I’ve noticed is a completely lack of tolerance to cold. Terry (my tech) would position the table…..
…and then it was time to put the mask on. The mask doesn’t actually aim anything or treat anything, but it keep me in the same position day after day, allowing the machine to hit the exact same spot.
I’d almost say the making of the custom mask was the weirdest part of the whole thing. It’s kind of like plaster of paris but for your face, and you can see and breathe through it pretty easily. But between that and feeling like the machine was looking at me as it moved around, I just found it less distracting to close my eyes as much as I could.
Once I was positioned and locked in, everyone left the room (through the crazy thick door…what the hell??) and machines began buzzing and moving around.
It was all definitely and infinitely easier than brain surgery but it has had its detractors too. I do think I’ve had some brain swelling. There’s been some head aches and a lot of nausea and I seem to get tired easier and I feel sleepy more often, but I was convinced by the end of the week that half of that was because I’d been living in a hotel room for a week and I was ready to go home.
The muss and fuss is over. I’ve made it through treatment and follow up is in 3 months. I’ve learned this week that the goal was not to destroy the tumor, but to “switch off” the cells and prevent any further growth. I will probably have this tumor for the rest of my life, but it will (hopefully) be in remission.
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.