Friday, July 25, 2014

Reflecting One Year After Receiving a Brain Tumor Diagnosis and Having a Craniotomy
Question:  I understand you were diagnosed with a brain tumor and had a craniotomy.  I know someone who was recently diagnosed with brain cancer and had a similar surgery.  I’m curious how you are doing after the surgery and if you have any general advice going forward?
Answer:  In reaching out to others like you did, I’m repeatedly told that everyone’s experiences after surgery is different.  Thereis a lot to say, but here are my two cents:
1.Surgery Recovery.   I was diagnosed with a grade 2 astrocytoma in my right frontal lobe and merging into the corpuscolossum.  The craniotomy recovery process was long and slowfor me. I was in the ICU for 2 days after the surgery.  I had strong headaches for several weeks.  I had a huge shiner under one eye – as if I lost badly to Mike Tyson.  Two days after surgery, I could not move my left hand, which the surgeonwarned me about ahead of time as a potential reaction from surgery due to the brain swelling from the surgery.  I was on a med called “oxy – something for headaches for a few weeks.  I had trouble walking –more from the pressure build up in my head after surgery.  Sometimes I’d have to sit after about 10-30 seconds of walking due to the pressure in my head.  In the first few weeks, I could not tolerate loud noises – even the closing of the microwave bothered me. I had regular night sweats, bad dreams, headaches, and tremors for a few months after surgery.  My headaches lasted for about four months – mostly dull, minor ones but annoying.  Four months after surgery, I started back at work – as a lawyer, mostly involving reading and reviewing contracts – and my headaches returned.  My doctors told me that my “return-to-work headaches could have been from fatigue,reading, or the remaining tumor.  All doctors I went to said that headaches are normal after the surgery.  About five months after surgery, I had occasional headache free days – hooray. I took naps for the first two to four months after my surgery.  
2.Fitness. Iyou are into fitness, here are my thoughts.  Before my diagnosis, I ran half marathons.  In the few days after surgery, I could barely walk.  It took me several weeks before I could walk one mile.  I lost all my fitness and had togain it back from scratch.  I took a very patient and slow approach.  Slow and steady wins the race, a fellow survivor told me.  I took that to heart.  I was cleared to jog after my first follow-up MRI post-surgery (4 weeks after surgery).  I just kept walking to build up endurance.  Five months after surgery, Icould finally walk two miles.  Nine months after my surgery, I began jogging.  Ten months after surgery, I finally managed to run for five straight minutes, albeit slow.  One year after surgery, I ran a mile without breaks.  I then started a “couch to 5k” plan.  All my doctors have stressed that exercise is great for recovery, and their only caveat is “don’t overdue it.”  I’ve yet to have a doctor give me more specific info on exercising.   I know of a girl who had a surgery to remove a tumor closer to her brain stem.  She was able to run a marathon about 5 months post-surgery.  Incredible.  Maybe I could have done that too.  Who knows.  But adopted the motto, “slow and steady wins this race.  
4.Stay Positive. Nearly every article about beating cancerurges survivors and caregivers to stay positive.   For me, that was hard to do when I had headaches.  It’s easy to feel good when you feel good physically.  But for me it was hard to feel good and positive when I felt crummy.  I stayed as positive as I could.  After a while, I realized I could still play soccer with my kids, exercise a bit, work, eat, walk, and feed myself.  So things can’t be so bad.  As the Lizarmy blog put it, living with a Grade 2 brain tumor is doable.