Things I am so over:

1. Reposting this information.  Did you know that the incidence of meningioma is supposed to be 1:1000?  Why do I know 5 people who have had one?  This is not counting the other 5 with malignant brain tumors.  I don’t have 1000 friends, not even on Facebook.  None of us have risk factors, like head and neck radiation.

2. Gen X funerals.  We’re not having another for a while, okay? 

Dear Friend (again, and yet another friend), 

I wish that I weren’t writing this to you.  Everyone is hoping and praying that this is benign, that surgery goes well, that you will emerge on the other side as you.  Including and maybe especially me. 

Knowing you, you will rock this, and be ready to do all the things, maybe even in 6 weeks. But it's okay if you aren't.

There will be changes.  Some temporary, some permanent.  Some improve with time.  Some are profound.  Own them, don’t hide them.  It takes more energy to fake it, and then people expect more of you.  It’s exhausting.  

Don’t let them tell you that you’re going to be ready to go back to work in 6 weeks.  (If you can, great. But FMLA allows you 12 weeks if you need it.) To remove a brain tumor intact, you need a skin incision that is 2-3 times the size of the tumor, and to remove a piece of the skull that is nearly two times larger than the tumor.   They keep it sterile, and can usually put it back, don’t worry.  You take the time that you need, while doing things to keep your brain happy and stimulated.  All the NYT games.  Duolingo.  Words with friends. Trivia.  You're the bomb at trivia, and we are a great team. Don't fuck that up, please and thank you.

But you will need more naps than you thought possible.  You will likely have symptoms you cannot anticipate now.  Since it is behind your eye, you may have vision loss if the nerve is involved.   You may have more numbness or even motor symptoms show up on your left side, or the right side of your head/face.  You may have a seizure in the next few months--and they can all present differently. I wish I could tell you what will happen and when.

size, shape, and location approximate; your friendly growth is highlighted:

Everyone gets their own brain surgery experience and sequelae (the what comes after).

My postop craniotomy symptoms: 

• The tremor; which mostly went away 

  
  

• Fatigue; which is better but not gone 

  
  

• The pain in my masseter muscle, which made chewing super painful; temporary—but would have been an awesome weight loss program 

  
  

• Some headaches; who doesn’t have those? 

• Forgetfulness and short-term memory loss 

  Everyone in midlife echoes this “oh, yeah, that happens to me.  Maybe I have a brain tumor”  Ha. Ha. Ha. 

  
  

  this is next level, not I walked into the kitchen and can’t remember why.  This is I walked into the kitchen, can’t remember why, and my wife tells me something at the same time.  In five minutes I couldn’t tell you what she said, much less what I was looking for in the kitchen.  I am so busy trying to focus on one thing that I cannot learn something new.  It suuuuuckkks.  I have to turn away from the TV and turn off the sound to process what she’s saying.  My new opener is, “Sorry if I’ve already told you this,” or “Stop me if you’ve heard this”.   She has learned (well, we both have) that if it’s truly important, we have to say, “stop what you’re doing, make eye contact, and/or write this down”.  

  
  

• If I don’t do things in the same order, I can’t be sure that they are done every day. 

  • Get up.  Pee.  Brush teeth.  Take meds.  cannot skip a step.  I still double check my supersized med box to confirm that today’s are gone, and feel my toothbrush to be sure it is damp.   

    
    

• Lists, lists, lists.  I would be sunk without them. 

  
  

• I hide things from myself, unintentionally. 

  • It’s not a fun game.  (Last time I wrote this, it was my ear buds.  I currently know the location of at least one pair.) Right now I am missing my brand-new portable phone charger.  I know that I had it after our last vacation, used it when I was visiting my family out of town...then nothing.  It’s driving my wife crazy.  My recall: as I was packing it, I thought this is a safe place for the car ride home.  My dog will never get it here.  So very safe that I cannot find it. 

    
    

• Loss of balance. 

  • This is worse when I crouch to the bottom cabinet, or to pet a dog.  I sometimes find myself on my ass on the floor.  In a bookstore, looking at something on the bottom rack.

    
    

• Loss of proprioception. 

  • Proprioception is the knowing where a body part is in space without seeing it.  Toddlers lack this when they walk into a table and bonk their foreheads.  I did the toddler table move on a protruding rock at a state park a few weeks postop.  Now I usually am aware of where my head is.   I still lack proprioception with my feet—if I can’t see them, I’m prone to tripping and falling.  I’ve learned to carry things, like laundry baskets or moving boxes, on my hip and watch my feet.  Don’t try to tell me something I need to recall later while I’m going down the stairs.  

    
    

• Impulsivity and risk taking.   

  • These do not blend well with physical symptoms above, particularly loss of balance.  I’m like a teenager again: “why the hell not?  Let’s (insert dumb thing here)”  Sadly, my middle-aged body does not bounce back like my adolescent self. 

  • I have a note in my wallet to stop and talk to my wife if the purchase is over $100. She thought I was going to come home with a new car when I went to the dealer for an oil change. 

Not all the changes are negative.   

• Like a toddler, I do notice the little things more, even if I am failing to see the big picture.  The bright yellow bird, the odd knot in the tree, the fluffy dog.  Sometimes I am so busy looking at these things I forget that I need to pay attention to where I’m walking. 

• I am a better active listener, because I have to be.  Just don’t quiz me later. 

• I try to embrace the opportunity for yes.  Yes, I will go on the walk, to the game.  The concert.  The play.  The dinner with friends.  Yes, I will stop what I’m doing and pay attention to the chat with my daughter or my mom on the phone.  See “inability to multitask” above.  

  
  

This is my pivot back to what I thought my adult self was going to be doing when I was 19.   I miss my old career like hell.  It was so gratifying, so vital to be needed every day.  To be there for the best and worst days of people’s lives, and some of the super mundane ones too.  To be responsible, respected by colleagues and nurses and patients.  It was terrifying to try to do it again and realize that I wasn’t the doctor I wanted for myself or my patients.  I wouldn’t see me.  The stakes were too high for me to keep trying with people’s lives.   

I try to shake off the “what if”.  What if I’d tried harder, longer, differently?  Then the negative what if creeps in: what if something awful had happened because I was trying to be needed? 

Images above from my medical school clinical anatomy text, Williams and Wilkins, 1992