Milestones After Recovery

Before my surgery, I wanted to know details about what the recovery was like.  Do you ever get back to normal?  What is normal like after surgery?  Here are some things I remember as being important that might help someone who is also going to have brain surgery.  Today marks six months since my surgery, and I will say that I am feeling pretty normal these days. 

10 days post-surgery: My prescription for dexamethasone ended.  It send me into terrible facial swelling and headaches and landed me back in the ER, where after 12 hours they told me that this swelling was normal and I should go home.  Avoid the ER whenever possible.

Oh my gosh, my face was so swollen.  It hurt so badly.  In the ER they gave me oxycodone and it did nothing.  Then they gave me morphine and it helped for 30 minutes.  Then they gave me more morphine.  Finally at 4am they let me go home.  Then my son woke up after I went to sleep.  It was one of the worst nights of my life.

16 days post-surgery: the P.A. removed the metal staples from my head.  I still had scabs and a lot of healing to do.  I definitely didn't touch my scar directly.

5 1/2 weeks post-surgery: I woke up on a Saturday feeling good enough to go somewhere with my kids, so our family piled in the car and went to a pumpkin patch.  It felt amazing to get out of the house.

6 weeks post-surgery: A raging horrible headache returned.  This time I went to my primary care doctor who managed to get me an appointment with my neurosurgeon when I had previously been told it was impossible.  I also went to my toddler's class Halloween party.  Bad idea.  Bending over was still really hard, and I felt pretty bad afterward.  Nap time for mom.

7 weeks post-surgery: I was able to very carefully blow-dry my hair, put on make-up, and look like a normal person.  Going through the process of "getting ready" made me so tired that I needed a nap.

Where that little division is in my hair on the right side of the picture (left side of my head)--that's where my scar was.

This is what things looked like underneath.  I had to be very careful washing my hair and I absolutely could not rub my scalp where they had cut my skull.  That would send me into a tailspin headache for days.

 8 weeks post-surgery: I got on a plane.  Bad idea.  Ice packs helped.  My head was still so swollen that wearing my glasses seemed impossible.

9 weeks post-surgery: A huge improvement in one week!  I stopped taking so many Tylenol and Advil pills.  We made an overnight trip to Seattle for Thanksgiving weekend. 

10 1/2 weeks post-surgery: I still needed lots of naps.  My husband and I went to see a film and the set-up bothered me and made me feel woosy.  I spent a lot of the film with my head in my lap.  I came home with a bad headache and had to pull over to take Tylenol when taking the babysitter home.  Bending over was becoming easier around this point though.  I could do my own laundry.

11 1/2 weeks post-surgery: I started speech therapy to help get my mouth to open more widely.  Between the exercises my therapist gave me and just plain old stretching out my face, my mouth eventually opened like normal sometime after 4 months post-op.

12 1/2 weeks post-surgery: I could walk 5 miles at a reasonable pace.  For at least two months I could walk, but I was terribly slow and trying to go fast made my head hurt.  Even at 12 1/2 weeks post-op, I still struggled to put a phone to my left ear or use my left earbud when listening to music.  By four or five months post-op, that wasn't a problem.  Also, bending over became much easier around 12-13 weeks post-op and I could blow dry my hair with my head upside down.  Victory!

14 weeks post-surgery: I got a haircut!  Also, I started using some hydrogen peroxide (check with your doctor on this) on my few remaining scabs, and that definitely helped them go away.  You never want to pick your scabs because you want the scar to heal and not get infected, but some of the long-term scabs needed a little help to get the blood to go away.

4 months post-surgery: I tried running on a treadmill.  I stopped after a minute or two because it made my head hurt.  My head still needed more time to heal.  I stopped needing naps between 3-4 months post-surgery, but I still needed to sleep 9-10 hours each night. 

4 1/2 months post-surgery: I could get by on 8 hours of sleep.

5 months post-surgery: I could run again on the treadmill without my head hurting.  Between 5 and 6 months post-op I was able to do a few hours of remote work and think clearly enough to make substantial edits to a graduate-level document.

6 months post-surgery: I feel human again.  My head still hurts occasionally, but I have WAY more energy with my kids.  So much more energy.  I do well on 8 hours of sleep and can't really sleep longer, but I can also survive on a little less sleep.  When I only get 6 hours of sleep, my body really struggles.  I get headaches and shakes and things like that.  Running is only limited by being physically out of shape, not by my head hurting.  I am looking forward to going back to part-time work, and I stay busy taking care of household responsibilities.  At 3, 4, and sometimes even 5 months post-op I would feel like I didn't want to do certain things (laundry, dishes, cleaning, etc.).  At the time it felt appropriate to put certain things off.  Now I feel differently, and I know that if I don't finish a task, it's because I didn't want to instead of because I couldn't and needed to rest. 

Take away point here: Recovery IS possible and it WILL happen (except in circumstances where it doesn't... I'm not trying to minimize people who have much more difficult brain tumors than I did).  Be patient with yourself and realize that healing takes an incredibly long time.  I would imagine that even if you needed substantial therapy after brain surgery, you would eventually see similar improvement and results.  I can definitely say that your skull heals and that is life changing in terms of what you are able to accomplish.  But a healing skull takes about 12 weeks, and that feels like a really really long time.

Hospital Stay

My surgery was on Tuesday, September 19th, and I think I went home on Saturday.  My memory from this time period is so minimal.  In fact, my memory of a good chunk of October is really minimal. 

While I was in the hospital I wore a cap thing to protect my incision from becoming infected.  Katie, the physician's assistant, came to check on me every morning.  Residents came frequently.  I had a drainage tube attached to my head, and I'm pretty sure the reason I had to stay until Saturday instead of going home on Friday was because my head was still draining a lot.  My husband and I watched the non-animated version of Cinderella and another movie called Five Flights Up with Diane Keaton and Morgan Freeman.  Don't ask me what the movie is about.  I can't remember.

In the midst of all this inability to remember, I was able to put together that one of the residents went to the same medical school as one of my high school friends and that my high school friend taught a seminar this resident took.  All I can say is that the brain is remarkable.  Apparently my long-term memory was not affected by the surgery. 

I was thrilled that walking was pretty manageable compared to trying to walk again after a c-section.  I had had two c-sections before my brain surgery, so surgery to me meant struggling to poop and having a hard time walking.  Thankfully these were not my problems after brain surgery. 

The nurses gave me a ton of meds after my surgery, and I'm devoting an entire post to managing your medicine after surgery because it is really complicated.  One of the amazing, glorious medicines that you get to take after brain surgery is dexamethasone.  It's a steroid that reduces swelling in your head.  Some people say it makes them want to eat a ton, but I think it left a really bad taste in my system and I hardly wanted to eat at all.  Between the fact that the doctor cut through muscles that move when you chew (so I couldn't open my mouth wide for months) and the fact that everything tasted badly, I hardly ate for several weeks.  They also had me on several kinds of laxatives, Pepcid, oxycodone (for pain), and who knows what else. 

One day my husband brought our sons to the hospital to see me.  I only remember that they came and we took a picture of me in my hospital bed with them.

And that's about it.  The day I got home from the hospital, my cousin and his wife were in town so they came over for tacos.  My cousin went to get me some See's Candy.  And then I was so tired I went to bed before they left.  The next several weeks I would sleep a lot, but I think that helps you get better.