Accepting the "new you"
My story is one of ups and downs and smiles tears and lots of change. I was always a loner. A single mother of 3, I left my familiar world in Rochester, NY and all my friends as well as my estranged family, for a fresh start in sunny Florida. However throughout the next 12 years I would be stalked by a relentless storm clouds. In 2005 while I was driving my car, I received a phone call that forever changed my families life. I will never forget it. It was as if it were a joke. Did she just tell me that? They don't tell people that type of information the Phone. However her voice still echoed in my head...Ms. Robinson? we have the results from your MRI and you have a brain tumor. I need to scheduled an appointment with a neurosurgeon immediately OK?...
Needless to say that was not a new staff member, and its not how they do things, so her life changed that day as well, Luckily I was in shock and went into auto pilot and drove home.
From there on life as I new it changed. I had a biopsy and I must say out of all the things iv been through, that was up there with one of the most painful. we think its because the surgeon didn't give me steroids, The results came back a grade 2 oligodendroglioma AKA by all my team as the "lucky tumor" as if there is such a thing right? They call it that because they grow slow. However let me tell you how "Lucky" It really is. This tumor only makes up 3-5% of all brain tumors, therefor being in an already "unlucky" cancer group in relativity to government funded research you can imagine how many advances have been made in my "lucky" one. You can imagine how many trials are available or how many of the 3-5%s are aware and able to utilize them. I myself have had 24 months of Temidar as well as 6 craniotomies. The first five of them, looking back now, were a walk in the park.When I compare them to my last ones in 2015. I would come home within 32 hours and be so roided up I couldn't sit still. I felt like wounder woman. However, I do believe it was in these moments of steroid induced mania in which I may have said and done things I normally wouldn't. At one point I even thought there were demons on my shoulders. Yeah. but as the meds subsided the change in me calmed down a bit.. However it seemed that not everyone believed or understood the science behind this. I still have associates, friends, and family in my life whom I would love nothing more than to reconnect with and have their support, who are unable to accept my apologies and give me some grace. Better yet, They should be giving us a badge of honor. None of them no what its like to have their head cracked open, to have seizures, loose their sight,hearing, teeth, be riddled with neropothy,Loose your dignity in public when people stair from the physical and mental changes, yet no, instead some of us get judged harshly as if we re at our 100% .
I truly believe brain cancer is such a silently painful one. Although sometimes we appear ok which translates to the world as "all better", couldn't be further from the truth.
As I had mentioned,some surgeries recoveries are much easier than others. As well as the more times you go into the same place the risk of infection goes up greatly. And of course "lucky-me" would be that percent that gets an infection. It took 2 weeks before my surgeon would go in and do a clean out. Because I was on steroids, all the head taps were not showing anything. Why didn't my surgeon realize that? Finely I begged infectious disease come in as the green puss was running down my neck. They immediately recommended to go in, which my surgeon reluctantly did.
Hours later Again I wake up screaming no end of my pain in sight. Just people hushing me, The surgeon told my mom it was the worst infection he ever saw in his career and he is almost 80! Two huge skull bones were "discarded" due to the necrosis, They were black and unrecognizable.He also told her that the tumor has upgraded to its final stage Grade3 oligodendroglioma. Another huge blow! To this day I I have a huge baby soft spot in the back of my head.After that I was finely, for a moment, allotted permission to receive the best pain management they could give me. There was many ups and downs.T Alot of mistakes and negligent, that I truly believe wouldn't happen If we have an advocate. Someone who is never afraid of speaking up for you. I even missed my little girls 4th birthday! Completely! I was in soo much pain, I couldn't even talk or comprehend what was happening! One of the darkest times of my life!
2years later and here we are. I have just completed 24 months of a phase 1 trial for the IDH-1 gene and to my dismay, the tumor has awoken while on it and so I was taken off. Next steps are Radiation and PVC. The worst thing is every time I try to get another opinion, they say the same thing, sorry , unfortunately you have a cancer that there isn't much in the pipeline for! what happened to my "lucky one" now huh?