My journey with a brain tumor diagnosis began on December 31, 2009. I had been married for 4 months and my husband had been deployed overseas for two months. I had just weeks before had gallbladder surgery and had been experiencing peculiar numbing episodes since surgery. On New Year's Eve, I experienced a very unusual episode and was taken by a friend to the hospital. After a CT scan, I was told that I had a plum size mass on my brain. I was taken by ambulance to my hometown, Greenville, South Carolina where I could be with my family and get proper medical opinions and treatment. It was confirmed after a week in the hospital, after a barrage of tests and doctors evaluations, I most likely had a Grade II Astrocytoma, which is a slow growing benign tumor. It could only be confirmed with a biopsy. My tumor is located on the left parietal lobe which is where your language center is located. A biopsy would have likely caused damage to that part of the brain. The decision was made to "watch and wait", doing MRI's every 3 months and watching for any growth.
I learned that I was pregnant in September 2010. Everything went well up until March of 2011 when I began experiencing stroke like symptoms. I was hospitalized and tested and it was determined that the tumor had grown significantly. I was referred to The Robert Tisch Brain Tumor Center at Duke Medical to see a world renowned brain surgeon, Dr. Alan Friedman. He determined that I would need surgery to remove as much of the tumor as possible. A date was set for me to deliver a few weeks early by C-Section. It was considered high risk and I had multiple doctors in the operating room for the procedure. Lauren Addison Grass was delivered on May 26, 2011, amazingly perfectly healthy since I had been on anti-seizure medication throughout my pregnancy which could have caused birth defects. I was able to recuperate and bond with my daughter until my scheduled surgery on July 25, 2011.
My husband, parents, sister, grandmother, uncle and my precious 8 week old daughter came with me to Duke for a surgery. This surgery was extremely risky and I would have endure part of the 7 hour surgery awake! I remember Dr. Friedman asking me questions during surgery experiencing extreme pain. I heard him say that he could not go any further. He told my parents that the tumor was the size of a small orange and that he got the "meat" of it but had to leave the "rind". He said had he gone as far as he could without causing more damage to my speech and feeling on my right side. He also said, “that baby needs to hear it's mother's voice". A week later the pathologist results came back that the majority of the tumor was a Astrocytoma, but several of the specimens were classified as a Grade IV Glioblastoma, the most aggressive brain tumor there is.
As a result of the surgery, I had very limited sensation on the right side of my body and was only able to say a few words after surgery. I knew what I wanted to say but could not utter the words. I could only move about in a very limited gait and was unable to remember how to do simple things like bathing or dressing. I suffered two grand mal seizures upon returning to Greenville after my surgery. My surgery had caused the seizures to change and I began a long journey of finding the correct dosage to keep them under control as well as physical and speech therapy to learn to walk and talk again. Eight weeks after surgery, I was fitted for a radiation mask and began 30 rounds of strong radiation which left me extremely fatigued. It was followed by almost non-stop chemotherapy.
In the almost 4 years since my surgery, I have gone to Duke every three months for contrast MRI's and blood work and meetings with my neuro-oncologist team for evaluations, progress reports and changes in treatment. I have been on two oral chemo drugs almost non-stop for these four years. I come to Greenville to the Cancer Center of the Carolinas from Sumter, S. C. every two weeks for my 3rd treatment which is an Avastin IV. I meet with my neurologist in Greenville every few months to monitor my seizure meds. I have also experienced two tumor regrowth since surgery, one which was treated with stereotactic radiation surgery and the most recent growth in October of last year which was treated with three chemotherapy drugs. Five weeks ago at Duke, my MRI showed that the regrowth had decreased in size and the chemo was once again doing its job. I go back for my every two month appointment on June 23rd. We make this 550 mile trip in one day usually. The anxiety leading up to these appointments is incredible as you never know what you will hear. We are exhausted after the long trip, many tests and the long examination and evaluation.
Continual traveling for multiple doctors’ appointments in Greenville and Durham, N.C. is difficult in many ways. It seems that I am either on the road for treatment or readying my daughter and myself for the next road trip for treatment. It has been a very difficult journey and living with all the deficits is a struggle. My faith is strong and I am living proof that God works in our lives.
I am so grateful to be a recipient of this wonderful organization and see firsthand the amazing effort and desire to help others that these women demonstrate to the chosen recipients and the many lives that are touched though their ministry. We never know what we may face in life but God and the kindness of others, see us through the tough days and gives us strength to face tomorrow.