Carolyn's Adventure in Tumor-ing
As tomorrow is my surgery day, and I’ll be dehydrated, cranky, hungry and sleepy, then hydrated but loopy, and then finally in the ICU with a part of my head missing, I can’t imagine I will be posting much. But, my husband Dave has promised to post updates on my behalf.
So, watch this space for the latest news. I’ll see you on the flip side.
Tomorrow is the big day. After a relaxing dinner with my family, and drinking a ton of water before midnight, I’m going to pack my bags and head to bed and try to sleep–“try” being the operative (HA HA) word.
I’ve been completely scatterbrained today. (See what I did there?) Time seems to be going really quickly.
My schedule tomorrow:
0500 – wake up. Wash my hair as usual. Shower with Hibiclens, which is a special type of antiseptic wash that makes me really itchy.
0515 – get dressed in my good hospital PJs. Dry my hair.
0530 – still drying my hair. It’s thick and luxurious, ya know.
0545 – cuddle the dogs. Tell them I will be back soon. Hug my daughter around the neck. Tell her I will be back soon. Try not to cry.
0600 – drive to Conyers to pick up my mom
0700 – arrive at Conyers. Cuddle my mom’s dog.
0710 – leave for the hospital
0720 – turn around cause I suddenly remember I forgot to pack a toothbrush. Grab a toothbrush from mom’s guest bathroom. Get back in the car.
0730 – finally leave Conyers. Get stuck in rush-hour interstate traffic with a carpool, but no HOV lane. Silently become more and more anxious as traffic creeps along.
0738 – Put on a podcast about some obscure history topic, like the skull thickness of Neanderthals
0808 – After the podcast ends, stare out the window in silence. Synchronized silence.
0822 – arrive at the hospital
0823 – look for parking. Foolishly bypass the valet option.
0826 – finally find a spot. Run to the elevator. (May the odds be ever in your favor Mom, I can’t be late for this!)
0829 – walk briskly to the day surgery check-in
0830 – get ready to hurry up and wait
If you’ve never had surgery before, allow me to introduce you to a pre-op visit. This is when you go to a clinic to get a physical to ensure you are healthy enough to undergo surgery. They take blood, listen to your lungs, make you stick out your tongue (to check your airway), and even take a look at your heart rhythm with an ECG.
The anesthesiologist talks with you, you review all of your medication, and you learn what you need to do before surgery.
You also meet with someone to sign all of the consent forms. (I did *not* ask about the Neanderthal skull situation.)
Everyone was really great. But it took for-ev-er. We were there for almost four hours.
It’s official: Wednesday’s the day. Unless something comes up.
Get ‘er done!
Earlier this year, I picked up a 23andMe DNA Ancestry and Health test. This is the type of DNA test that will not only tell you your vague genetic ancestry, but also if you carry any genetic variants “that can influence your risk for certain health conditions.” With a family history of breast cancer, I was interested in seeing if I had the BRCA gene variants, which this test covered. Plus, I wanted to compare my ancestry results to those of my parents, who had taken DNA tests through another company.
It was really exciting to get the email saying my results were ready. I logged in and was pleased to see that nothing serious was identified as a health concern. (Yes, I know this doesn’t replace real genetic counseling. No, it did not say I would get a meningioma.)
The ancestry section generally agreed with my parents’ ancestry. Northern and Northwestern European, with a bit of Ashkenazi Jew (I’m trying to accurately figure out that part). Typical white girl results.
Then, I saw something that simultaneously made me LOL and blew my mind:
The test showed that I have quite a bit of Neanderthal influence to my DNA. I didn’t know much about the Neanderthals, so I immediately read up on them and learned that they had disappeared about 40,000 years ago–but their legacy lives on in people like me.
I thought about cavemen and their stereotypical skulls… which also made me wonder if my surgeon will take longer on my surgery, because my thick Neanderthal skull is so extra?
HAHAHAHAHAHAHAHAHAHAHAHA. I am sooooooo funny.
If you know me personally, you probably know I have an odd sense of humor. Once I got over the shock of this diagnosis, I have gone full-out gallows humor on it. I constantly make brain tumor jokes, blame things on my tumor, etc.
I am going to have to find a new excuse for my quirks once this thing is out.
Today is the Friday before my surgery. At this time next week, I’ll be in the hospital, (hopefully) recovering well and feeling as best as one can feel 48 hours after craniotomy.
As I sat at the beautiful Thanksgiving table at my mom’s house, I couldn’t help but think how grateful I am for my support system.
My colleagues at work have been amazing. My boss, her boss, and even the founder of the company have been so incredibly generous and caring. I have a Meal Train set up so we won’t have to worry about cooking, and I even received a card from a secret admirer (addressed to “My Favorite Redhead”).
My in-laws are coming to stay with us. My mom, a retired RN, will care for me after my discharge. My friends are sending me well-wishes from all over the world.
I am a lucky girl.
Warning: There’s a picture from one of my brain MRIs, very clearly showing my tumor, at the end of this blog post. If you’d rather not see it, turn back now. It’s not gross, but I know some folks are squeamish about this type of thing. It’s pretty much a very detailed x-ray picture.
MRIs are the tests I get to track the progress of my meningioma. Today was a *very special day* because it was my Stealth MRI, which is a special type of MRI used to help the neurosurgery team plan my surgery.
MRIs use extremely powerful magnets to create images. Thus, if you have anything that’s not OEM in your body, the tech needs to know about it. You fill out this long questionnaire. If you’re wearing jeans, they give you these cute little paper shorts to wear. Even hair elastics with metal have to come off.
The MRI machine is a large, noisy portal-looking thing that lives in its own room with lots of “WARNING! CAUTION!” posters all over. It has a bed to lay on (0/10, very hard, do not recommend) which the tech positions to put you into the magnet. The tech sits in another room but can see and hear everything going on.
Once you’re laid down on the bed, you have to enter the machine. For a head scan, that means that you’re going in head first. I’m tall, so only my knees and lower legs are visible once I’m in–I imagine that shorter patients are entirely consumed by the machine. You also have to wear this cage-mask type thing over your head and keep your shoulders aligned with this special positioning device.
So you’re in this MRI tube, locked into position, afraid to move, somewhat uncomfortable… and the loud clanging, buzzing, hissing, and womp-womp-womping begins. It’s the worst EDM you’ve ever heard. You get earplugs or ear muffs to dampen the sound, but it is still slightly above a dull roar. This goes on for 20, 30, 40 minutes, maybe even an hour, depending on the study you’re getting.
Did I mention the claustrophobia? I opened my eyes–once–during an MRI and estimated there was about 4″ of clearance between my face and the top of the tube. NO THANKS. If I keep my eyes closed, the claustrophobia doesn’t bother me.
Most MRIs I have involve contrast. Contrast is a dye that allows the radiologist to see more clearly your insides on the MRI. So, about halfway through, the tech comes back in and administers the contrast via an IV that has already been placed. (By the way–these guys are pros at IVs.) Some people feel warm and tingly after contrast. Some have a terrible allergic reaction to it. I’m fortunate in that it doesn’t seem to bother me.
Today’s MRI was relatively quick. I always ask for a CD of my images for my records (plus, it’s super fun to look at at home!). Today’s images were different and I’m not sure I have the right software to read them, but here’s a really good picture of my tumor from the scan I had in September:
Now, it’s just a countdown to November 28, Tumor Eviction Day.
The worst part pre-surgery is anticipation. I fall asleep most evenings thinking about the steps involved in my surgery. This is not all obsessive and negative; I use visualization as a method to calm myself before something stressful (like brain surgery, LOL), or as a coping tool for an ongoing stressful situation (like anticipating brain surgery, LOL).
Preparation for surgery is the easy part. I have gone under the knife several times and am oddly calm the morning of. I rehearse, in my mind, what will happen–I will go to the hospital, I will change into an oh-so-fashionable hospital gown and those slipper socks that don’t quite fit, I’ll get an IV put in by an awesome nurse, and I’ll wait. A lot. I’ll want to sleep, but the fluorescent lights won’t let me.
Once the time comes and I’m wheeled on a bed into the operating theatre, the anesthesiologist will do her magic. The last thing I’ll remember is the bright OR lights.
That’s the easy part.
I’m having a harder time thinking about my recovery. I’m anticipating a lot of pain. Swelling. Maybe a black eye or forehead bruises or a big bandage around my head.
I’ll spend the first 24 to 48 hours in ICU, where I hear they don’t let you sleep a lot. I also hear I’ll be put on powerful doses of steroids, which always give me insomnia and mess with my stomach. I may also be given anti-seizure medication.
After I can show I’m not having any problems, I will move in with the other post-operative patients, until (I guess) I can pee and my pain can be controlled by oral pain medication instead of IV.
I just want to get home as soon as possible.
I discovered there are several well-known people out there who have had meningiomas, had them removed, and have lived to tell the tale.
One is Simone Giertz, a Swedish-born, San Francisco-based robotics inventor/maker and professional YouTube personality known for her “Shitty Robots” series (which are amazingly excellent but NSFW entertainment). She made a vlog (that’s a video blog to you and me, Russ) about her surgery and recovery, which I found very enlightening and encouraging.
Another is your and my favorite 90s singer-songwriter, Miss Sheryl Crow. Sheryl Crow announced she had a meningioma in 2012. She blamed cell phones for her affliction at one point, but there is no recognized definitive cause of meningioma. And it’s also interesting to note that there is no recognized connection between her previous bouts with cancer and the meningioma.
Others include:
As I’ve explained my situation over the past few weeks, I’ve heard from more people than I ever expected about meningiomas. The dental assistant working on my teeth said she knew of two people her age (under 30) who had undergone brain surgery and been totally fine on the other side. A woman I work with mentioned she had a craniotomy about 20 years ago and was back to playing tennis four weeks later. My graduate program director mentioned she had a friend who had the same thing and was completely fine now. There are also other stories online, especially on YouTube, from other folks who have been down this path. They are all encouraging and comforting. As it turns out, I’m in pretty good company.
I’m one of those freaks who actually likes to see most* medical things. With few exceptions, I do not shy away from blood. When I had my appendix out, I woke up out of anesthesia with someone showing me my OWN APPENDIX in a specimen jar–a request I made before I went under. I always ask for pictures of my insides; I know what my left hip socket, my pelvis, my ovaries, and my colon look like. And, of course, I know what my brain looks like… and the meningioma. At least in two dimensions.
My meningioma appears an opaque, bright white on MRI, about the same size and shape as a quail’s egg. There are a couple of blood vessels going to it (or maybe coming from it). It is close to the convexity of my skull, which means it is going to be visible almost right away my skull is cut and the dura is removed. It has excellent borders and a distinct shape on MRI.
What is it made of? The answer, of course, is cells, but what type of cells? Straight up arachnoid membrane cells? Or something else? This article says sometimes meningiomas contain “cysts or calcified mineral deposits,” or “hundreds of tiny blood vessels.”
I find it somewhat amusing that I could end up with a rock in my head.
*I can’t watch dentistry videos on YouTube… ewwww
About a week after I was told I should have my meningioma removed, I went to a support group. I felt lost and wanted to be with other people who had similar, or maybe even the same, experience as me. I wanted to know what surgery was like, what recovery was like, what challenges I might have… what was it like for others?
But I was a little apprehensive. Here I am, with a benign tumor. The brain tumor support group I found was geared toward cancer patients, and I wasn’t comfortable butting in with my (in contrast) “easy” situation. So I spoke with the social worker who coordinated the group ahead of time, and she assured me that I would be welcome and I would find it helpful.
I really wish I had not gone.
It was sad and depressing. Every minute of it.
Even the sandwiches served for lunch were sad and depressing… old bread, weird “spurkey” lunchmeat, and wilted lettuce.
Without going into much detail, I heard from:
I left feeling defeated and hopeless. Instead of being supported, I felt like I was being set up for the worse case scenario… like when you consult Dr. Google and find out your heartburn is really a heart attack, not because you overdid it on pizza and beer.
I already decided that I was going to be positive about this experience, if only to keep my daughter from the the reality of this entire situation. I want to be a good role model for her, and to show her that a positive attitude and outlook truly do make a difference in every aspect of life. I’m scared to have surgery, I’m scared to have my skull cut open, and I’m scared of the unknown. But my daughter is what keeps me going.
There is clinical evidence that positive attitudes contribute to a positive post-surgical outcome. I didn’t do a deep dive into the journals for this; I know it to be true from my own experience. I know I will have bad days where I feel sorry for myself and my situation, but I also know that my future is bright, I am brave, and I can do it.
Just have to make sure there’s p-l-e-n-t-y of espresso.
40 Year Old Brain Tumor 