Crushing GBM Grade
For those of you who do not know, I have been battling a type of brain cancer called Glioblastoma (Grade 4) since May of 2015. This type of cancer is the most aggressive form, and is often referred to as “The Terminator” because less than 4% of all patients survive beyond 15 months – majority of patients are over 65/male – There is no cure – Surgeons and radiologist tell you directly that they are just trying to buy me a little bit of time.
In the beginning I was experiencing tingling in my right leg with little to no interruption to daily living. Having had back surgery in 2011, I promptly made an appointment with an orthopedic surgeon in South Lake Texas. The surgeon was positive that the issue was from a spinal fusion, and placed me on steroids with the hopes that I would regain normal function and obtain a quick cure.
Within 24 hours I could not walk without the assistance of crutches. I quickly returned to see my orthopedic and he stated that he believed that the issue could possibly my nervous system, spine or brain (as I had visible signs of limb shaking).Within the hour I was rushed to Irving Texas for six additional MRIs, and within two hours it was determined that a 3.25cm tumor was located in the left center portion of her brain that controls my motor skills (located in a very delicate hard to get to area of the brain).
The news has been quite devastating, and overwhelming to say the least. A craniotomy was initially scheduled for Tuesday June 30th, but due to an increase in size over a period of two days, and signs of swelling on the brain, my surgeon decided to move the surgery to the next morning. The tumor was removed, Thursday June 25th.
Within a week of surgery, it was determined that I needed to have the bone (skull) removed because I had developed an infection at the site of my surgery. Since bone breeds infection, the neurosurgeon wanted to completely remove the infected bone and leave a soft spot (like a baby). I didn’t feel comfortable with this – So I opted for a mesh material (which may need to be removed at some point). I was then in the hospital for another 5 days. During this time, I had lost the ability to walk and was in a wheelchair when I returned home.
I then began a 6 week protocol of radiation and chemotherapy. The first few weeks I felt decent, but by week 3 of radiation I was so sick that I slept most of my days away. My husband drove me to Dallas every morning at 6:30 am for treatment. Radiation was very overwhelming, especially when dealing with the brain. The radiologist made a mold of my head and face – then placing (screwing) the mask to a surgical table. It is very important that you do no move during this process so that there is no additional damage
done to the brain during treatment. I remember my chin shaking because I was so nervous and claustrophobic. (Photos shown below).
By October, I was feeling well enough to travel to Tybee Island, in GA, for a family vacation. I honestly felt like we were all getting together to say our goodbyes. I had an MRI scheduled two days after my return, and I was in a state of panic. Glioblastomas grow quickly, and infiltrate the entire brain with long tentacle like arms that cause pressure to the brain. In the end days, many patients can/will experience the following: Headaches (severe), lose ability to eat, walk, speak, swallow, communicate, seizures, hallucinations, incontinence, loss of control of extremities, memory issues.
In November, Jim and I packed up our home in Texas, and I moved to Florida to be closer to family. We were separated for almost two months while Jim finished working. The transition has been easy in the sense that we know that being together as a family during this time is the best for all of us. It was the most difficult decision having to leave my amazing team of doctors in Dallas.
My protocol going forward is 12 months of chemo, and MRIs every two months to see if any new tumors have appeared. On December 10th, my newest MRI showed another tumor that is at the 1cm mark. This tumor is smaller than the last, but it does need to be taken care of sooner rather than later – because of the rapid growth (double in size every 2 weeks).
I feel very lucky to still be here – walking, talking, and enjoying my time with friends and family. I have decided to do away with conventional medicine and I am perusing a holistic approach.
I am on a very strict diet, juicing, wheat grass, organic everything, cannabis oil treatments daily. I take of 55 supplements a day. It is difficult for me to even get out of the house before 11am because my life has become so regimented.
My ability to walk has returned, and I no longer need the assistance of a walker, cane or wheelchair. I am doing better than most, and have the mindset that I am going to beat this monster. My attitude is positive, and I am grateful for every day. I won’t ever give up the fight.
I am sharing my story with the hopes that I can/will be a blessing/support for others going through the same experience. I would also implore you to be your own advocate when dealing with cancer.
Please continue to keep me and my family in your prayers. We have a long road ahead of us. Thank you everyone for your support, and love.