Donate to CaringBridge in the next 1 day, 4 hours, 15 minutes and 35 seconds
and your donation will be matched, dollar for dollar, by an anonymous supporter—up to $25k!
6/22/2017 Latest post:
Creating a Caring Bridge Page for myself and having surgery was NOT on my Summer '17 bucket list. However, I thought that this would be the easiest way to communicate. Going to try to keep this short, while answering questions that have been asked. 14 years into this......misdiagnosed for 3 years, 1 brain surgery, 2 reconstructive surgeries, hundreds of shots, nerve blocks, infusions, dozens of medications, numerous other medical procedures and sadly, I am back to square 1. Due to the progression of symptoms and growth of the tumor, brain surgery #2 is scheduled for July 18th at Johns Hopkins. There simply are no remaining options and the tumor that was supposed to be inoperable is being more stubborn than me! To sum it up short and sweet, the location of my tumor is extremely dangerous. It is located behind my right eye in the middle of my head in the Cavernous Sinus Wall/ Meckel’s Cave and it's wrapped around my trigeminal nerve. It basically occupies a very small place and is surrounded by veins and a major artery. Therefore, adding more risk to an already risky surgery. Last surgery, I hemorrhaged and the surgery was aborted. However, I have been blessed to be in the hands of one of the world's best Neurosurgeons, Dr. Henry Brem, Chief Neurosurgeon at Johns Hopkins. The only man to have ever been able to get inside my head, haha! I couldn't trust him, or adore him anymore than I already do. He saved my life once, and I have all of the confidence in the world in him. God placed him in my life 11 years ago, and he has been a Saint ever since. I have been asked why am I having surgery, because I don't look sick. Unfortunately, sickness doesn't always have a "look". I have always said that this tumor will never define my life and for me that meant living as normal of a life as I could. For those who know me, know that I love to have fun! Yet, sadly, there is the not so fun part that I don’t let very many people see. I have learned over the past 14 years to mask the pain. First and foremost, for my children. So that they never live a life of having a "sick" Mom. So while pictures on Facebook are cute and tell one story. Unfortunately, there is the other story; the sick story. I live my life in pain 95% of the time with some form of a headache, ranging anywhere from a mild headache to a full blown migraine that could last weeks. Nothing breaks the headaches. Due to the damage of the nerve and the growth of the tumor, I have very little feeling in the right side of my face and a constant tingling sensation. I have no feeling in my right eye, which leads to a scratched cornea. The branch of the trigeminal nerve that branches into my eye causes blurriness and pain. Lastly, the tumor also affects my occipital nerve as well, causing a lot of pain down the back on my head into my neck and down my right shoulder and arm. I simply cannot live in this pain any longer. When I was first operated on 11 1/2 years ago, there were only 12 documented cases of this tumor worldwide. Due to the rarity and complexity of it, there is no simple solution. I had a better shot of winning the lottery ;0. While I am greatly aware of the risks involved, I am remaining hopeful and optimistic. I don't know what life has in store for me after the surgery, but I am going into it fighting the greatest fight of my life, for my life in hopes that I come out healthier and stronger before. Thank you for all of the prayers, calls, letters, texts, emails, cards...etc......they are all truly appreciated. Please keep my family in your prayers as we navigate the next few weeks. It's been a huge personal roller coaster for me. Having brain surgery 1 time is traumatic. Having it a 2nd time, is unimaginable. There are pros and cons of having already done this; pro is I know what it expect and con is I know what to expect. Reading the operative notes from the 1st surgery probably wasn't the most brilliant thing to do, but I never in a million years thought that I'd be going back into that huge, white, cold looking OR. I never in a million years thought that surgery would be put back on the table! We will update when we can. I am planning on being back in action quickly, as life is way to short to not have fun!