For awhile now I've thought of telling my story in my words. It starts in December of 2015, when I finally decided, after almost 2 years of headaches and seizures, to go and have them checked out. After routine test showed nothing, a CT scan was ordered just to be on the safe side. Dec 23rd, I got a call that forever changed my life, there was a lesion on my brain. I didn't know it then but I would soon be bound to a life of hospitals, surgeries, medicine, multiple drs, and mounting debt. an upcoming craniotomy informed us it was a cancerous stage 2 astrocytoma, not the worst, but definitely not the best news to hear. To make a long story short, I had to do go through 6 weeks of radiation and chemo and another 6 months of chemo alone, with seemingly good results. In March of 2017, after the first surgery, chemo, and radiation, we were told that everything looked good and there was no regrowth showing up on the MRI. At my follow up appointment in July of 2017 the MRI showed tumor regrowth leaving Thomasville Oncology no other choice but to refer me to UF Health, Shands, in Gainesville, Fl.
Michael and I traveled to Gainesville and met with Dr. Maryam Rahman. Her work in Brain Tumors and cortical mapping is recognized worldwide. Surgery was scheduled within a few days. While in Gainesville getting pre-op done, I was admitted to nuero ICU after the MRI showed the tumor had hemorrhaged which caused me to lose feeling on my left side as well as caused focal seizures. Surgery was moved to the following morning, on August 11, 2017 four days before the scheduled surgery. Dr Rahman removed almost all of the visible tumor and built a titanium plate to replace the bone flap that the original surgeon left out and neglected to inform us of. I was awake during the surgery to help Dr Rahman determine what part of my brain was affected. Although the surgery was somewhat successful, I still have limited use of my left side indicating that the damage was permanent. Pathology came back showing that the tumor was Stage 4 Glioblastoma Multiforme.
GBM is a very nasty and aggressive form of cancer that there is little to no effective treatment for, there couldn't be any worse news! After meeting with Dr Tran, the Nuero Oncologist at UF Health, We were told that Optune is the best and almost only treatment for this beast. I started Optune in Sept and it has been quite an adjustment. It is 4 pads stuck to my head for no less than 18 hours a day that have to be changed every evening to keep the sores from being as bad. They are then connected to a 6 pound machine that I have to wear like a back pack or pocketbook. Simply put, if it's not on my head, it's not treating my tumor, Optune has shown real promise in killing GBM cells and keeping them from multiplying. I am hopeful I will eventually adapt to this new form of normalcy since I will have to wear this for the rest of my life. Optune cost around twenty thousand dollars a month which is absolutely insane..Fortunately, Novocure is allowing me to keep the device until something with my insurance is worked out.
There are many immunotherapy trials and cancer vaccines that could work for me, that conveniently enough most insurance doesn't cover. Every dime that I receive through this campaign will go directly to out of pocket expenses relating to my cancer treatments and any immunotherapy trials I qualify for and can possibly afford.
Brain cancer has proven to be very expensive to deal with and treat. The prescription prices are astronomical, and without insurance it's next to impossible to afford and be able to live a normal life. After my first surgery medical bills had left us tens of thousands of dollars in debt, not counting treatments and the second surgery and all of the prescriptions. On top of that, the insurance company seems to decide what they will and will not pay for at random. I have been canceled all together twice now, and just found out this week that it has cancelled on me yet again.
Sunday Michael and I made our way to Gainesville for what was supposed to be an early MRI Monday morning. After arriving at our room, I had a severe seizure, completely different from the focal seizures I have had in the past. I was rushed by ambulance to the emergency room where I spent the entire night while they ran test, including MRI and CT Scan which all came back as normal as they can for a person with a brain tumor. Praise God!!!!After getting a lesson in the proper way to take my seizure medication, as well as adding a new seizure medication to the arsenal, I hope to keep the seizures at bay! I was released from the hospital Monday afternoon and thanks to God I am now at home. I am currently in a clinical trial on Optune as well as a gene mutation study, and possibly immunotherapy in the near future. My advice to anyone having headaches and /or dizzy spells, get it checked out! early detection is key. I waited too late . It's not the life that I want but it's the life that I have.
We have been showered with prayers and support from family, friends, and even strangers. I am humbled beyond belief at the outpouring of love and support that me and my family have received. I know that everyone has hardships of their own to deal with, but I ask each one of you that reads this to consider sharing this, at the least. Thank you so much for your prayers, support, comfort, and kind words! It means the world to me and my family and we pray that each of you have a very Merry Christmas and a Happy New Year.
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