I volunteer as a “Mentor Angel” with a group called Imerman Angels. This organization carefully matches and individually pairs people touched by cancer (a cancer fighter, survivor or caregiver) with someone who has fought and survived the same type of cancer (a Mentor Angel).
I’ve been volunteering with Imerman Angels for nearly six months, and before that I was a patient support volunteer with the National Brain Tumor Society for more than two years.
The hands down, NUMBER ONE topic I get asked about most is brain surgery. And no wonder, who wants their brain invaded?
This was my experience…
So, you are going to have a craniotomy
I remember when I found out I was going to have a craniotomy to remove my tumor, I got off the phone with my doctor and fell to the floor to cry uncontrollably for nearly 30 minutes.
I think I tried to talk to god and apologize for not praying since I was 10 years old, but then I sat down and wrote this blog entry on September 12, 2008.
What is it like to have brain surgery?
I tell people brain surgery is easier than they think. The doctors put you to sleep and then you wake up X-amount of hours later and you never know what happened because you were asleep! You hurt, and you have to take it easy for a long time, and you can’t go on any roller coasters for a while, but other than that it is all good.
What I usually leave out of this explanation is that brain surgery isn’t easy emotionally; it is some messed up shit.
What I remember about the hour before brain surgery
(Note: I’ve had two brain surgeries, and this trip down memory lane is related to my second brain surgery.)
I remember the last hug I had with my boyfriend (now my husband). We held on as long as we could, but I remember breaking the hug to walk away.
I remember going into pre-op “alone”. There were medical assistants, surgeons, nurses and anesthesiologists around, but I felt so alone.
I brought my iPod with me. I made a brain surgery playlist. Seriously, I did that.
I was told to put on “the gown,” and that I had to take everything off… even my underwear and socks.
I remember going into the bathroom to change and have a pre-surgery pee. I relished that pee because I knew when next I woke I would have a catheter in, and my urethra wouldn’t feel right for the next five or six days. Geesus.
I remember looking at myself in the mirror one last time before surgery. I looked myself in the eyes, long and hard. I stared myself down. I had a GI Jane look: shaved head, no make-up. Just me in a hospital gown.
I wondered if this would be the last time I ever saw myself in the mirror. There were fears about potential paralysis after my second surgery, so I wondered if this would be the last time I would be standing again.
I jumped up and down; shook my arms around. I pressed my palms together. I wanted to experience and appreciate my limbs as they were, just in case I lost something after surgery. (Some of which I did.)
I was alone
But the alone-ness was freeing.
I can’t believe I am going to quote scripture here (because I don’t know much about the Bible), but the hour before surgery makes me think of the story of Job–the dude who loses all his possessions, his family–everything. But in the end, he still keeps his faith and never blames god.
Before my second brain surgery I was all alone and I didn’t know what was going to happen and I had nothing left–not even socks–but I still kept strong and went for it. (Then again, what else was I going to do? Let a tumor grow in my body’s most vital organ?)
Brain surgery is a character test, that’s for sure.
Mourning myself and Logan Whitehurst
I remember returning to the hospital bed, now in the gown. The nurses and assistants hooked up IVs and did all their pre-op stuff. I put my headphones in and listed to my playlist, which consisted of a song a friend of mine wrote about Logan Whitehurst, one of my friends who died from brain cancer nearly two years before my own diagnosis.
About 20 seconds into the song I started bawling. I missed Logan so much. I missed what he represented. I was sad that he went through what I was going through, and I started imagining how alone he must have felt.
The pre-op crew was very concerned about my crying and crowded around my bed. They thought I was scared about the surgery. I tried to explain that I was crying about my friend who died who also had brain cancer, blah, blah, blah. I don’t think they believed me. What are the odds?
I don’t think I believed me (and I’m sure there was a lot of projecting going on in my head).
This is the song Indian Valley Line wrote for Logan:
At some point, the nurses ran a magical drug through my IV, calming me down, making me forget all fear. At some point the medical team turned into angels and told me everything would be alright.
And everything was alright.