Things to Expect | Brain Surgery
I went back and forth while deciding whether to write this, but for the same reason I have shared my journey from diagnosis to neurosurgery to my current recovery, I decided this, too, was important to share. That reason is that in times like these you don't need a secret—you need support. In sharing my journey, I've had many strangers reach out to support me and cheer me on, but also others looking for support themselves, as a few followers are about to undergo neurosurgery as well. With that, I am writing this with the hope that it helps others become a little more prepared for this experience. The kind of experience you can never fully prepare for.
First, you're going to be okay—you're strong, and you're going to make it through. I had to keep reminding myself that everything would be okay, although I never really believed it until my anesthesiologist grabbed my hand before they put me under (I was nervously cracking jokes up until the last minute). I think he could tell nerves were setting in, so he took my hand and looked me so deeply in the eye that I felt it in my stomach, and he said, “You’re going to be okay, I promise.” That reassuring gesture was the last thing I remember of the operating room and in my opinion, the best last thing to remember going into surgery.
Anyway, back to reminding yourself you're going to be ok. I learned that staying positive was the best way to prepare. Shadows of fear are going to be strong and try to sneak in, but do your best to stay in the light. The shadows don’t do anyone any good, so if you can, keep them out. I know it's hard, but when they creep up on you... blast music, dance, go for a run, or go hang out with a friend. Positive vibes in your thoughts and activity. I promise it will do wonders.
PRE-SURGERY
1. One size does not fit all
Neurosurgery is complicated (shocker, right?! Lol). Everyone has a different experience because there are so many factors impacting the surgery itself and the recovery after—your health going into the surgery, the location and size of the tumor, etc. With that in mind, my experience might be very different from yours, but there will certainly be similarities. My tumor was about the size of a quarter in my cerebellum just two centimeters from my skull, making this a "low-risk" procedure in the grand scheme of brain surgery...as my friend asked, is there really a such thing as low risk brain surgery...?
2. Friends and family
This one I struggled with, and it kind of shocked me as well. Be prepared for people not knowing how to respond. With some people, you will tell them and have to ask yourself if you actually told them because they never acknowledge it. Remind yourself that it’s okay—they do care, they just don't know how to respond. You will have other people reach out to you and stand by you—let them, and embrace their support. But there will be others who will run and you may never see or hear from them again... but you know, you don't need those people. Some will ask you a million questions, so get comfortable talking about the topic. And still others will look to you to see whether or not you want to talk about it. Just because they don't ask, doesn't mean they don't care—those people just don't know if YOU want to talk about it or not. The diagnosis, surgery, and recovery will flood your life and will be most, if not all, that you talk about for a while. For me it helped to talk about it, maybe because I struggled to believe it... I still (six weeks after surgery) barely believe it.
3. Denial
Yep, I was in such a state of denial when I was told I had a brain tumor. I'm 27, teach fitness, have a six-pack, can run 5 miles easily, and eat clean. In other words, I do everything I can to maintain a healthy lifestyle. So how could this happen to me?! When I told coworkers, friends and family, I honestly felt like I was lying. I even made my doctor show me the MRI because I didn't believe him; I thought there was a mistake. My experience goes to show that this can happen to anyone and that life is precious. Life can change in an instant. Cherish it and appreciate the little things like being able to stand up on your own, brush your teeth, know your name and the date, hold someone’s hand, and go to the bathroom without someone helping you. I took those things for granted until now.
4. Positive vibes, positive thoughts
The best thing I did prior to my surgery was to stay positive. I surrounded myself with positive people and tried to not be alone. I found that the more I was alone, the easier it was to let the negative thoughts and feelings get to me. There were times when I got on the phone with loved ones far away to explain what was happening, and tears would well up in my eyes. To snap out of it, I would just say out loud to myself and loved ones "but everything will be okay." I am not saying you can't cry—I mean come on, you have a brain tumor, you're allowed to cry. But for me, this is what worked best.
Up until the last minute I was cracking jokes and trying to give myself a few more smiles because I knew if I started thinking about what was really about to happen... a five-hour surgery, having part of my head shaved, cutting into my skull, a titanium plate, staples, stitches, pain, lots of medicine that would make me sick, and the unknown…I knew if I let my mind wander there (it makes my stomach turn just thinking about it), I would crumble and have a complete breakdown ; but I couldn’t let myself have a pity party leading up to surgery.
Be scared, you're human. I may have put on a face for others to show I wasn't scared, but I was. EVERYDAY going to work I was scared about what that day would bring. I was so uncomfortable. I'm still scared today, six weeks after the surgery. But keep your chin up and smile. You'll find your tribe (a group of amazing people), you will surround yourself with love and support, and you will get through it. Remember stay positive and smile because you've got this. Say it out loud over and over, “I'VE GOT THIS.”
5. The week leading up to surgery
During the week leading up to surgery, eat healthy and be aware of any medication you cannot take (your doctor will tell you all of this). Try to plan ways to stay busy without wearing yourself out. Make sure to take one night, say mid-week, to pack your bags and prepare the items you need for the surgery and hospital stay after. But, other than that, go to dinner, drinks, a show, a movie, etc. Side note: before I forget to add this in somewhere…if you wear nail polish on your fingers , remove it prior to surgery because the medical team needs you nail polish-free in order to accurately measure your heart rate with a finger monitor. Also, the night before or morning of surgery, you will be asked to wash your body with Hibiclens Antiseptic, a soap used in the hospital to kill the germs all over your body. I hyperlinked it to Amazon to conveniently purchase the soap. It’s also available at other locations like Target where I purchased mine.
My surgery was on a Monday, and on the Saturday before, I taught an early morning SUP board boot camp on Lake Michigan, went to a friend’s birthday that afternoon, and celebrated into the night with my closest friends (my tribe). It was the best thing for me because I was around people I love celebrating someone else (it was nice to not have the attention on myself or see people feeling bad for me or not know what to say to me)—to just be together with my closest friends made this night the highlight of my summer.
I spent Sunday night eating dinner and bowling with my family and boyfriend. I found an activity that was fun, but not overly strenuous, and surrounded myself with people that love and support me the night before surgery.
6. Hospital bag
I wish I had a list prior to going to the hospital...there are a few things I learned I really needed lol. The hospital has everything you will NEED, NEED, but there will be a few things you'll want for your own comfort.
1. Chapstick: I brought Burt’s Bees. I recommend something clean and organic.
2. Full coverage underwear: because those gowns don't cover your backside. Pack a week’s worth.
3. Deodorant: I wasn't able to shower for four days. (I know gross, but you don't have the energy…I was offered but decided to wait.)
4. Cleaning towelettes: Since scrubbing down in a shower wasn't an option, I felt at least a little better when I could clean my face with a wet towelette.
5. Clean clothes: Make sure to remember that you'll need clean clothes to wear home. You’ll want to have layers and slippers. I failed on this one...the idea of putting the clothes I had already worn at the hospital back made me cringe, so I had to send someone out to Lululemon for shorts and a top. LAYERS. Pack shorts, soft undergarments, tanks, sweats, and pullovers. The steroid will make you feel all kinds of temperatures. One second you’re under a blanket and the next you have ice pack on your forehead. So for the ride home, you'll want options to layer up or wear something lightweight. Socks with rubber treads on the bottom or slippers with grips are helpful, but you'll be wheeled out of the hospital in a wheelchair, so shoes aren’t necessary. I wore Nikes, but they were a pain to put on.
6. Pillow and blanket: For the ride home, you'll want these. They will help prop you up and sleep more comfortably during the car ride…you'll fall asleep on the on the way home unless you're going two blocks away. I also found it helpful to sit in the front seat because the taller seat helped support my head.
POST-SURGERY
7. The A-TEAM (the surgeon and nurses)
Or what I like to call angels. I could go on and on about the entire team—how the anesthesiologist was my true angel putting me at ease at the most difficult time or the surgeon and nurses who became my heroes. First, I had an amazing surgeon, Dr. Orin Bloch at Northwestern Memorial Hospital. With his calm but confident demeanor and successful performance of the surgery, Dr. Bloch is one of the best, if not THE BEST. The rest of the team was a group of amazing women who helped me get through the toughest time of my life. Each nurse pulled twelve-hour shifts, staying by my side, checking my vitals, and giving me medicine to moderate the pain.
You let all walls down and depend on these nurses. Although these women may not recognize me outside the hospital walls, I forever owe them a great debt of gratitude. They had to help me change clothes, take medicine, and even get up to go to the bathroom. They had to remove a catheter (ugh, I cringe thinking about it…like I said all walls down), remove four or five IVs from my arms. OMG, they even had to empty the drain attached to my head full of brain fluid. Those are heroes. They stayed by my side when I was scared that I wasn’t going to be okay, and they were there when I was being a picky eater, placing special food orders to get whatever food I could stomach.
All of this is to say trust these people. They are there to help you, and they will help you. They will listen, so if you're in pain let them know—they may know to routinely take your vitals, but they can't read your mind. Never be afraid to speak up because the nurses will have your back. Mine more than had my back.
8. THE DRAIN
I won't go into too much detail but enough to get the idea. So during surgery (you'll be asleep), they connect a drain to your head that removes fluid to keep the swelling down. They will monitor this over the next couple days, and when the amount of fluid is normal, they remove the drain. Until then, the drain comes with you wherever you go (think of it as an accessory?).
When the time comes to remove the drain... it isn't awful, but it isn't something I want to do again...ever. You are awake during this. They'll numb the area and distract you from the discomfort, which on a scale from one to ten, I’d say was a seven for me. Not a ten, but definitely not comfortable. Right before they removed my tube they told me to think of my happy place—I went in and out of my happy place throughout the removal because when you have no idea what it feels like to a have a tube removed from your head, it's VERY HARD to go to your "happy" place. I was able to visualize it for a hot second and then would snap back to reality. But I did get to that place where I felt most at peace: Talcott Mountain in Simsbury, CT overlooking the autumn leaves and pumpkin patches, alongside my best childhood friends, Maddie, Morgan, Marissa, and Erica. When it’s removed, you don’t feel a sharp pain; it's more of a feeling of pressure that quickly dissipates once the drain is out. They add a stitch or two to close the area where the drain was connected, and after it’s all over, you get to go lay back down, and you’ll probably nap because removing the drain takes a lot out of you.
9. THE FOG
This one is most likely subjective pieces and possibly a side effect specific to a tumor in the cerebellum. But for three to four weeks I felt like I was in a foggy state. It almost felt like an out of body experience—my thoughts were my own, I could comprehend everyone else and understand what was going on around me, but to put words together was too difficult and exhausting. Opening my eyes was hard, and I was sensitive to noise and light. So most of the time I sat there in silence, and my mind would run as the days passed. When I was able to walk, it felt well, umm, "trippy.” I felt dizzy, but things weren't spinning; I felt more like I had just gotten off of the Mad Tea Party ride at Disney World. I was dizzy enough that I was too unstable to walk in a straight line. Because this hazy feeling takes a long time to go away, I learned to measure progress by weeks and not days. Days will all seem to be the same, but over weeks you will notice the progress. It blows my mind to think that just three weeks ago I was in this fog given where I am today.
10. MISS INDEPENDENT, YOU'RE GOING TO NEED HELP
So I've always done everything for myself. I live alone with my dog; make my own meals; and do my own laundry, dishes, taxes, repairs, etc. I hate asking for help, so it bothered me when others would do even small things like opening doors for me or serving me food. The stubborn side of me kept saying, “I can do it myself!"
Well, that desire to be independent certainly had to change, and there will no doubt be times that you'll get frustrated that you can't do things yourself. You're going to have to just put your ego aside and let others help you. You're going need to get comfortable letting others do your laundry for you and help you change clothes. Someone will have to set up your shower and sit outside to make sure you don't fall. You'll need people to cook and bring you food. Someone will have to stand behind you walking up the stairs and in front of you going down the stairs. People will even have to stand outside the door when you go to the bathroom (this one frustrated me the most…like can't I have a moment to pee without someone two feet away?), but you’re not at the hospital with the emergency pull in the bathroom in case you fallen. This recovery will be a lot of US in order for you to get back to ME. Just remember these people love you, are there to help you, and want to get you up and moving as well.
11. Recovery hacks and things you'll need
A few things I wish I had known prior/had previously purchased before I went into surgery
1. 1 in 10 pillow: This was the BEST find. They have several versions of this pillow, I purchased mine from Bed Bath and Beyond. When you first go home you will need to sleep at a 45 degree angle for a few days. This pillow helped me sleep, nap and relax at that angle comfortably.
2. Folding Chair for the shower: You will be too weak to stand meaning too weak to stand in a shower so they recommend placing a chair in the shower to be able to shower on your own if you safely can. I also suggest, placing some sort of towel on a chair to prevent sleeping.
3. Handheld shower head: I was fortunate enough to already have one already installed in the bathroom I was recovering at. Having a shower head I could hold made the showering much easier.
4. Baby Shampoo: Another thing you will be instructed by the doctor is when you are able to shower you are only able to use baby shampoo for a couple days after being released. You can buy this at many locations. My family had to run out and purchase some at Walgreens.
5. Cup with lid and straw: You will be weak and coordination might still be off when you first arrive home, Spills happen but a cup with a lid will help from wearing your drink. You will be taking a lot of medicine so you will want to have water near by.
12. SET GOALS, BUT LET YOUR BODY BE TIRED
I have a Fitbit so I liked to track my activity and see if I was progressing. I wanted the speediest recovery and was going to push, push, push myself and get back to "pre-surgery life" ASAP. Well, brain surgery isn't just a scrape on your knee or even anything like the knee surgeries I’ve had—the doctor isn't going to say you can be off your crutches or we’ll take your case off in two weeks. I had to learn this the hard way...set goals, but set realistic goals, and don't put a timeline on your recovery. Slow and steady wins the race; it’s the tortoise and the hare, and we all know the hare doesn't win this one.
I made great progress my first week out of the hospital. I felt invincible! But then I tapered off of the steroid for the swelling, and after all of those steps forward, I suddenly felt like I was in reverse. I was so discouraged, but when I talked to my doctor, he respected my determination, but looked at me and said, "Erin, it's okay to let your body be tired." That was all I needed to hear. I could remain determined and keep a positive attitude knowing that exhaustion wasn’t failure, but rather just part of the process. When I left to doctor’s office and returned home to recover, I would ask myself “Is my body tired?” If so, it needed the rest to recharge in order for me to keep progressing, so I had to rest.
13. IT'S OKAY TO CRY
Let it out, let it all out. You have every right to cry. Now don't go getting lost in those shadows and being sad the whole time, it'll only make things seem worse. But if you need a cry, cry. Trust me there were many times pre and post-surgery that I wanted to cry, but my body was too numb by the experience or just too tired to actually cry. I know everyone around me was crying tears of joy when we found out my tumor was benign, and my surgery should result in a complete cure. In time, it'll all catch up to me I'm sure, and I'll have a good cry. They'll probably start off as sad tears, but they'll end in tears of joy because I am fortunate to tell my story, and it's a story of success.
14. FRUSTRATION
There is going to be a time when the get well soon wishes fade. People assume that because you're out of the hospital, you must be fine, and you may not hear from those people again. Without the emotional boost from all of the initial support, you may often become frustrated. You want your old life back—you want to be able to do simple tasks, see the people you use to see day to day, walk your dog, work out, spend weekend nights out with your friends, and have date nights with your significant other. I get it. It's hard to accept, and you'll wonder why you, why?! Well, because you're strong enough to get through this and you will, that's why. There’s no sugar coating it: you will get frustrated with simple tasks; it just isn't easy. Accept frustration, but try not to allow that frustration to become discouragement. I went down that rabbit hole, and it's hard to crawl out. Once I got over that state of discouragement, I felt silly for feeling bad for myself. Host a pity party for yourself if you need it but no more than one night because YOU'VE GOT THIS.
15. IMPORTANCE
Finally, this experience provides incredible perspective. You'll have a clearer vision of what's important in the world. I was at physical therapy last week, and my physical therapist taped my shoulders to relieve muscle tension. Just before, he asked me if I had plans to go out after. He immediately saw that I was confused by his question, so he clarified that he wasn’t sure I would want to have tape visible to others if I was going out. I looked at him and said when you've gone through an experience like this, looking silly or people staring is the least of your worries. The petty or materialistic things that bug you will fall by the wayside, and you’ll just be really grateful to be alive. With that, the best thing you can do is to hold on to that feeling for as long as you can. Even as surgery becomes more distant in the rearview mirror and the obstacles become fewer, keep your newfound perspective, focus on the truly important things in life, and remember that every day is a gift—don’t take that for granted.