On February 28th my life changed forever, I had my first seizure while driving to meet a friend for dinner. I was able to pull off the road until the seizure stopped and drive to our local ER. There I had a CT that showed a small walnut sized tumor on my right frontal lobe that was later confirmed to be GBM. I was referred to the Preston Robert Tisch Brain Tumor Center at Duke where on March 5th my GBM was completely removed by Dr. Allan H. Friedman.
I did 6 weeks radiation with 145mg Temodar, two week break then started with the 300mg Temodar. I will go for my one year scan on April 1st. I have not had any tumor regrowth. I find that amazing seeing as everything I could ever find on the internet did not give me much hope. My doctors at Duke however do not seemed surprised. This does not keep me from being scared all the time. I am thankful, but its everyday you wake up thinking…is this the day I have another seizure because my tumor is finally coming back? March 5th I will have gone a full year without tumor regrowth.
I have to say that I have also tolerated my treatment pretty well. I get what we like to call chemo head sometimes (dizzy and lightheaded) and do become tired more easily. Being diagnosed with GBM has taken a toil on me mentally more than physically. I find it hard to be happy and motivated and find myself being more depressed even though I try so hard not to feel this way. Also it is very frustrating to search for answers to all the many questions I have and hitting brick walls. I can’t even seem to get straight answers from my doctors at Duke. I love my doctors and they are very good doctors, it just feels like they don’t listen sometimes. I do not want to face having to take chemo anymore and I get physically ill at the thought of ever having brain surgery again.
My life has changed having GBM in the following ways…I am more irritable, easily tired, no muscle mass(I was told this was from steroids), went from being an avid hiker to being lucky if I go out for a one mile walk once a week, horrible vision, get sick easy, no concentration, no patience,depression, and degenerative arthritis also caused by use of steroids, I was told.
I am told that if my April scan comes out clean I can have a PET scan in June and if that is clean I can stop chemo and just have scans every 2 months. I pray that this is my future. I know I sound pretty down about everything and I don’t mean to be, I am thankful for my doctors and my treatment because without these I know I would not be here. It is just that this type of cancer leaves you with such uncertainty for your life and I think this is the hardest thing about having GBM for me.