My “Journey” With Glioblastoma Multiform
How It All Began
The funny thing is I just thought I needed a new prescription for my glasses.
I was getting an eye ache on and off for a few weeks, so I thought it was simply eye strain due to outdated lenses. I actually had scheduled an appointment with my eye doctor. And then one night while I was sleeping it felt like someone was stabbing me in the side of my head with an extremely sharp knife. The pain was excruciating. On a scale of 1 to 10...it was a 20...or more. I have never hurt so much in my life.
My husband, Michael, rushed me to the local hospital, where I had both CT and MRI scans. These scans quickly revealed the cause of my affliction: Glioblastoma Multiforme or GBM, a very, very nasty type of brain cancer.
The Battles Begin
Why “battles” and not “war”? That’s the tough one. There’s a saying about “winning the battle but losing the war” and I soon learned that this was going to be the best I could do. You see, there is no cure for GBM. So the end result of my war with it was known from the start. GBM was going to win, no ifs, ands or buts. However, that did not mean I was not going to battle it, every step of the way.
I have been a fighter all my life — from a hard knocks beginning in the public housing projects of Providence, Rhode Island to multiple surgeries for Ulcerative Colitis during my teen and young adult years. As my Mom would say, I am one tough cookie.
My first battle with GBM was going to be surviving the brain surgery, which took place less than 24 hours after I received the devastating news from the scans. My neurosurgeon opened up my head and tried to dig out as much of the cancer as possible. It is a tricky task, since GBM features tentacles that wrap themselves around many parts of the brain. My tumor mass was on the left side, wrapped around an optic nerve, thus the reason for the eye aches I had. The brain surgery lasted four hours and I came through it with mostly flying colors. I was alive but the sight in my right eye would never be the same and my balance was going to be a little shaky from now on. Still, I considered this a battle won.
The next battle was going to cover a two-stage front: an initial six weeks of both radiation and chemotherapy. I thought of this as a kind of hand-to-hand combat. And first I had to be fitted with my battle gear. Before the radiation could begin, my radiation oncologist outfitted me with a mask, which was molded to fit snugly — ouch! — over my face and head...I looked like The Wo-Man In The Iron Mask. This mask served the key task of ensuring that the radiation was pinpointed to attack, with incredible precision, the various sites of my cancer cells, while protecting the rest of me and my brain.
I happen to be claustrophobic, so I have to admit that donning the mask and entering the radiation machine were tough challenges. I decided that the only way I could handle this was by sending my mind someplace else, literally thinking happy thoughts, ignoring what was happening until each treatment was done. To be honest, sometimes the six weeks felt like they were lasting six years. Fortunately the chemo regimen — a daily dose taken in pill form — was a lot easier to handle. I had hair loss from both battle fronts but the nausea was thankfully limited. So, I am claiming victory in this battle, as well.
Next it was time to take a break, call it a ceasefire...no radiation or chemo for one month, to allow my brain to heal. At the end of this period I had another MRI that would serve as my new “baseline” and help my team of doctors determine the next course of treatment. The good news is that the initial six weeks of radiation and chemo had held the cancer cells in check, with no significant growth areas. Thankfully that meant that I would not need to undergo any additional surgeries or radiation for the time being. The next battle would “simply” be an additional four months of concentrated chemotherapy, with a good possibility of continuing the chemo for as long as I’m standing.
And I am happy to report at this point in my battles I am still standing...a little wobbly most days but definitely standing tall.
On A New Mission
As you might have guessed by now, I am not one to mope around or wallow in self pity. Do not get me wrong, I have had my crying times but that is not going to help me or anybody else. And it is “everybody else” I have decided to focus on in my current and coming days.
My new mission in life is to try to help those unfortunate men and women who have been or will be afflicted with GBM. I also want to do whatever I possibly can to help find a cure for this dreadful disease. I know these tasks will mean wearing several hats — thankfully not masks — as an educator, as an advocate and as the most “politely aggressive” fundraiser on the planet. Before my battles began with GBM I was fortunate to enjoy a long and successful career in retail sales. My plan is to take everything I learned from that career and apply it to my new mission.
My hope is that I can rally many, many individuals, companies, foundations and organizations to join me in this special mission, to help make a difference by literally blasting GBM out of existence.
My heartfelt thanks to you all for joining me on this part of my journey!