70 Things I Learned from Having a Brain Tumor

Hanging out in the hospital exam room.

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I was hoping that brain surgery would teach me a thing or two. That I would wake up from my operation with some sort of hidden knowledge that’s only accessible to those who’ve had their skulls cracked open.

It’s not that I thought I’d wake up speaking French or anything (though I wouldn’t have been against that. I’ve always wanted to learn French). Rather, I imagined I’d groggily rub my eyes and look around with a new appreciation for the world around me. My new perspective would prevent me from getting upset about the small stuff.

I thought that after brain surgery, I could rise above the trivial crap we often find ourselves miring in.

And for a while, that was the case. They say that your true self comes out when you are heavily medicated, and my true self, to everyone’s surprise, was an absolute sweetheart. I loved all my nurses, even the blond that Rand had dubbed “the nasty one” (“You just don’t understand her like I do,” I said, drooling onto my gown). I declared my mother the best mother – NAY, the best HUMAN – in the entire universe. I was even tempted to call a few people that I hated and tell them how I had changed my mind about them, how I was wrong to suggest that if they were a crossword puzzle clue, they’d be “a four-letter word that starts with ‘c’ and rhymes with punt.”

Trust me, no one was more shocked than I about my new-found niceness and goodwill.

Of course, I was hepped on something ten times stronger than morphine, and I suspect that had something to do with it. For when I finally came down from that stratospheric high, many many days later, I found I was back to my old, cranky, ill-tempered self.

And for a while, I moped, because I had gone through all that brain drilling and learned positively nothing.

In hindsight, though, this isn’t entirely true. I did learn a few things. I learned what it’s like to have a brain tumor. What it’s like to get an MRI and a CT scan and what it’s like to be completely and utterly knocked out. I learned what it’s like to have staples in your head and what it’s like to have them removed.

I learned what it was like to have brain surgery.

Hell, not even my doctors, who are experts in the field, have been through that.

Here are some of the things I learned from my experience. I tried putting them in some sort of coherent order, but that kind of failed miserably, so instead, I’ve just plopped them all into one big list.

Call it a brain dump, if you will.

1. Trying to diagnose yourself over the internet is a terrible idea. The world wide web, once a dear friend, purveyor of porn, and shopping buddy, will turn on you. And, as my friend Chad so brilliantly puts it, you will come away thinking that you have a life expectancy of three or four minutes.
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2. Rather than asking Google all those questions rolling around in your tumor-ridden head, I found it best to write them down and direct them to your doctor. Every. Single. One. (Well, every single one that pertains to brain tumors. Don’t go asking your doctor about where you can find those naked photos of Prince Harry from Vegas. He might know, but it will just get awkward from there.) If you don’t write them down, trust me, you will forget them the second you enter the exam room, and will conveniently remember them again well after you’ve gotten home.
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3. Feel free to run around the house doing your best Arnold Schwarzeneggar impersonation, saying “It is a tumor.” Trust me: it will never get old.
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4. Note that the tumor is not the sole reason behind your tendency to enter a room and forget why you went in there in the first place. If that were the case, everyone on the planet would have a brain tumor. My mother would have 17 of them.
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5. However, the tumor may be the reason behind your headaches, your hormone fluctuations, and why you think that Sorority Boys was a good film.
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6. It’s okay to be scared out of your mind.
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7. If you are claustrophobic, getting an MRI may cause you to freak out. Calm yourself with notion that the process is similar to being inside a big front-loading washing machine. Become the dirty laundry.
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8. You will have to remove all metal on your body. That includes body-piercings. This means that at some point after your MRI you will find yourself staring at three metal hoop earrings, and you will not, for the life of you, be able to figure out which one was in your nose and which two go in your ears.
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9. If your pants have metal on them, you will be given hospital scrubs to wear, which are comfortable, but not really designed for big-hipped gals. I give you Exhibit A:–
   

   So Cosmo says I’m fat, but I ain’t down with that.

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10. I kept asking the technician a bunch of “What ifs?” (What if he passed out, leaving me inside the machine for hours? What if the building suddenly lost power, and I was stuck inside?) After going through every unlikely scenario with me, he finally said (with a more than passing degree of exasperation) that in an emergency, I could crawl out of the machine. So remember that: if the zombie apocalypse happens while you are getting your juicy brain scanned, you can always crawl out.
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11. MRIs are insanely loud. The noises fall somewhere between those of a garbage disposal, a semi-automatic machine gun, and a semi-automatic machine gun that has been put inside a garbage disposal. Fortunately, you’ll get earplugs and (if you are lucky) headphones, too. So you can listen to NPR and replace some of the dendrites and synapses that you lost to irradiating your head.
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12. You will likely be quite calm for your first MRI, because you have convinced yourself that it’s just a precautionary measure to ensure that nothing is wrong. You will likely freak out for your second MRI, because clearly, something is wrong and THAT IS WHY YOU ARE GETTING A SECOND MRI. Fear not: the technicians are often quite used to hysterical crying (however, when you finally do lie down for the scan, the snot from your crying fit will clog your sinuses something fierce).
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13. Once the scans start, you can’t move at all. Take care to pick any wedgies beforehand.
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14. Compared to an MRI, a CT scan is like a walk in the park. A very short walk.
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15. Tumors are like meth-cooking tenants in a cheap apartment complex. Even after you give them notice of eviction, they can be hard to get rid of. And they often trash the place before leaving.
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16. Naming your tumor is a great way to show that you are dealing with the situation in a light-hearted manner, or may be a subtle signal to your friends that they should stop asking you when you are going to have a baby, because you have a FRIGGING BRAIN TUMOR and that is occupying most of your time right now.
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    If you do chose to name your tumor, DO NOT name it after one of your in-laws. That will not come off as the heartfelt tribute you intended it to be.
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17. You may be tempted to try and figure out why you presently have a brain tumor. This is a waste of time. Brain tumors can be the result of a myriad of things, so it’s nearly impossible to pinpoint one cause.
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    Unless, say, you spent your childhood sticking your head inside the microwave and turning it on. Because that’s probably why you have a brain tumor.
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18. There is no shame in eating an entire dish of brownies or half a dozen cupcakes in the span of six hours. If anyone questions your behavior, explain that you are eating for two.
    

    A small sampling of some of the several dozen cupcakes I was sent.

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19. Suddenly, Rihanna’s half-shaved haircut will seem completely reasonable.
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20. The upside of this experience is that you now have a great excuse for forgetting people’s names. Behold:
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    “I’m sorry, I just had brain surgery. What should I call you?”
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    “Mom. You should call me mom.”
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21. A bit of life-long retrospection is normal. If you look back upon things, and your biggest regret is that you should have spent less time working out and more time eating cake, then you can’t really complain. If the only mistakes you’ve made involve seeing too many Ben Affleck movies while they were still in the theater, then consider yours a life well lived.
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    Even though you’re pretty convinced that you still deserve a refund for Daredevil.
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22. Yelling at those close to you is a completely normal and shitty consequence of being scared.–
    

    Sorry about that, baby.

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23. Screaming at the TV or internet is perfectly acceptable, too.
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24. While one would hope that learning of a potentially cancerous legion on their brain might make them gain perspective, sadly, often times, the opposite is true. Rather than worry about the bigger issues before you, it is easier to focus on the fact that your tailor totally botched the alterations of your dress.
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    Of course, part of the reason you’re so pissed about the dress is that if someone can screw up fabric, just imagine what they can do to your head.
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    Then remember that your doctor’s machinery will be slightly more advanced than a Singer sewing machine.
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25. In my experience, most neurosurgeons do not get sarcasm. If you openly ask them what are the odds that your tumor is a rogue Lego that you shoved up your nose at the age of 3, they will likely explain to you in detail the high improbability of that.
    

    Warning: Do NOT insert in nose.

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    They do, however, get a kick out of hearing you say, “Just take a little off the top,” when you are about to go in for surgery.
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26. Odds are, you will not be able to take your tumor home to have it bronzed, because for some reason your doctors say they need it.
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27. The following are unacceptable nicknames for your neurosurgeon: Buddy. Champ. Bubba. The Slicer. The Dicer. Iron Mike Slice-on. The Widow-Maker. Extreme Barber.
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28. Have someone you trust speak with your neurosurgeon. They should ask a long series of questions, and investigate your doctor thoroughly before your surgery. This is to ensure that your surgeon is not, in fact, a zombie, and this entire operation isn’t a ruse to get to your delicious, delicious brain.
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29. Upon revealing that you have a tumor to friends and family, you may find that they react in different ways. Some may express their sadness at learning that you are not the prime physical specimen they always believed you to be. Others may openly show signs of guilt, because honestly, they never expected that Voo Doo doll to work.
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30. You may notice that friends will start to look at you differently. For example, they may stare at you intently for minutes at a time, or peer into your face, seemingly in search of something.
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    Fear not: they are probably just concerned about you and are looking for any tangible signs of illness. Either that, or they are trying to figure out by your facial expressions which of your things you will bequeath to them in a will if things go badly.
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31. Understand that your medical condition provides a rare opportunity to serve as a life-lesson for others. Be sure to offer your services to friends or relatives with small children. If the child has a nasty habit, this is a great way of getting them to kick it.
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    “Why do I have a brain tumor? Because I picked my nose too much when I was little. You don’t pick your nose, do you, Jimmy? Because that’s basically like ASKING for a brain tumor.”
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32. The look on your loved ones’ faces after you tell them about your tumor will remain etched in your mind and heart until probably the day you die. Considering that, it is probably best to tell your parents what’s going on over the phone.
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    Do not lead with “I have a brain tumor.” That sort of tends to freak people out.
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33. You may have a parent who is not inclined to voicing his or her affection towards you. After a phone call with said parent, you may tell them that you love them, and they will reply with, “Yeah.”
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    This will be weirdly comforting, because if they had said, “I love you, too,” then you’d really start to worry.
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34. You’ll be amazed by how many people you know have gone through the same thing. There’s nothing more calming than having a friend say, “Your tumor is only a centimeter long? Pssh. Mine was the size of a golf ball.”
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35. You may find that your husband has taken to wandering around the house, playing the ukelele, and singing some of your favorite songs, as a means of coping with the stress of this situation. It is best not to look directly at him when he does this, or there is a good chance that your heart might explode.
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36. Nor should you think about the way his eyes twinkle in the light of day (again, because of risk of heart explosion).
    

    And holy crap, do they twinkle.

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37. It’s entirely okay to spend the night before your surgery catching up on Mad Men. Be warned, though, that you might wake up demanding Pete Campbell’s testicles on a plate.
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38. The idea of having your head cut open is much more acceptable when you learn that the only other option is to literally pop your eye out and go in through your ocular cavity. (Which I still SWEAR must have been a joke. Right?)
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39. Proper trousers are for those with intact brains. You may feel free to wear pajamas all day for at least a week or three.
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40. Before surgery, make sure to clean your house and pay your bills, because the only thing you’ll want to do after surgery is sleep and eat pudding. Sadly, after extensive research, I can definitively say that sleeping and eating pudding will not result in a clean house or paid bills.
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41. The last part of your body to wake up from anesthesia is your lower intestine. (Translation: You will not be able to poo for days and days. Do you hear me? DAYS AND DAYS.)
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42. Good friends will listen to your post-surgery constipation stories. Great friends will high-five you when you tell them that you are actually able to poo again.
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43. Fruit bouquets are pretty much the best thing you can send anyone recovering from anything.
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44. Drink plenty of water the day before your surgery, since you won’t be able to have any the morning of (and you’ll be so dehydrated, the nurse will have to rub your vein in order to get blood drawn, which is all kinds of unpleasant).
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45. Have a clever one liner prepared for when you come to. Since I had a bunch of metal in my head, I decided to go the Terminator route, and held a photo of Edward Furlong circa the mid-nineties, asking my husband if he had seen this boy, John Connor.
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    He didn’t get the joke. Once-in-a-lifetime set up AND HE DIDN’T. GET. THE. JOKE.
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46. Occasionally, surgeons will forgo putting a metal plate in your head and just rely on the bone to fuse on its own (or for scar tissue to develop and protect the hole in your skull). This means that you will be running around with a soft spot in your head for several months. Make friends with babies. They understand how fragile you feel.
    

    At least you aren’t a jellyfish; their whole bodies are soft spots.

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47. If the surgeons skip the metal plate, they will leave a drainage tube inside your head for a little while after surgery. Depending on where your tumor was, it may extend incredibly deep into your brain. Removing it is akin to picking the biggest wedgie ever. It will be glorious.
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48. Also, the removal of the drainage tube will be gross and horrifying to all spectators. Even those who gave birth to you, and who have presumably seen a lot of disgusting things come out of your body.
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49. Worse still will be when they staple shut the hole the drainage tube left in your head. I’m not gonna lie: that will hurt like hell.
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50. Realize that this experience will make you an unmitigated bad ass. Feel free to bring it up constantly, even when it doesn’t pertain to the conversation at all.
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    “Congratulations on your promotion! Did I mention that I had brain surgery? Because I did. Me. Me. Me.”
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51. The total bill for my surgery was around $57,000. We paid about $2,000 out of pocket. Health insurance is a godsend. I wish everyone had it.
    
    

    20 minutes in this room was pricier than any hotel I’ve ever been to.

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52. Sometimes going for a short walk can feel like a huge achievement unto itself.–
53.  Ditto for eating four desserts in one day.
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54. For the first time since 1985, you will find yourself needing your mom’s help to get into the bathtub. And to wash your hair. And to get out of the bathtub. And to dry your hair. That’s okay. That’s what moms are for.
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55. Your surgeon will put a grease in your hair in order to part and hold it in place prior to the surgery. It will take several long washes before it comes out. On the plus side, it smells pretty good.
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56. Depending on your surgery, it will take you any where from several days to several weeks before you start feeling even remotely like yourself. Use this downtime wisely. Take up a new hobby (like seeing if the staples in your head are magnetic) or take some time to appreciate the artistic menagerie that is daytime television.
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    (Don’t be too hard on yourself if you can’t follow the plot. It’s mostly the copious amount of drugs in your system, and not a sign of cognitive damage.)
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57. Despite your proclamations that your bladder is as dry as the Sahara, you will probably have to get a catheter put in for your surgery. You probably won’t remember it being inserted or removed. But afterwards, your bladder will spasm like hell and you’ll have to pee every five minutes.
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58. Having your staples removed doesn’t actually hurt at all. But you can pretend that it does if you need extra sympathy points. Just be sure to get the physician’s assistant to play along.
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59. Unless it says, “take as needed,” your medication is not optional. Your whines about the horse pills you have to swallow will be largely ignored by your caretakers and husband.
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60. Being on the sidelines is scarier than being in the operating room.
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61. Contrary to what movies, TV, and The Simpsons have taught us, you don’t magically “wake up” from surgery the way you would a nap. You don’t really remember coming to. Instead, you’ll be in haze of drugs and anesthesia for several days.
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62. During that time, you will say many embarrassing and inappropriate things. Pray no one has a video camera.
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63. Even under sedation, The Muppets Take Manhattan is entertaining.
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64. Steroids stop your brain from swelling. They are crucial and life-saving in this respect. They will also turn you into a moon-faced teenager. Expect to have mood swings, eat everything in sight, and break out unceremonially.
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65. Random bald spots or facial and neck bruises (from where they clamped down your head) are completely normal. If anyone asks about them, explain that you tried making out with a badger.
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66. When people offer to help, they aren’t just being polite. They want to help. That’s why they offered.
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67. You may not remember very much of what happened during the days and week after the surgery. Try not to write any ill-advised screenplays.
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68. No one is actually expecting thank you notes, but it’s a nice gesture if you send them, anyway. Bonus points if you write the note from the perspective of your tumor.
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69. For the love of all that is holy, go easy on yourself. (I went running three weeks after my surgery. That was stupid. Running when you are healthy is bad idea. Heck, running at any time when you aren’t being actively chased is a BAD IDEA.)
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70. Don’t pick at it.