Q. How was your meningioma discovered?
A. It was discovered in February 2001, during an MRI to investigate a pituitary dysfunction I had suffered from for many years. I was referred to an endocrinologist and an MRI was ordered to investigate the matter. My pituitary gland was fine, but a large meningioma was discovered in the frontal lobe of my brain
Q. How did you source your doctor?
A. We chose to have the surgery at a large, university-based hospital, which has a highly rated neurosurgical facility. It was four hours from our home, but because we had only recently moved to our city, Springfield, Missouri, we were not too familiar with the medical community. We would not hesitate to stay here for such a surgery now. In the six years since, we have developed complete confidence in and appreciation for the medical care available here.
Q. What course of treatment did you undergo?
A. My tumor was large and presented with excessive brain edema so surgery was my only treatment option. The day after my surgery, I began to develop the very serious complication of post-surgery brain swelling. I am told I was so badly swollen that I was unrecognizable. The swelling actually forced the earwax out of my ear canals. After five days of not responding to medication, I had to be taken back into surgery to correct the problem. Several days later, I began to regain consciousness.
I remember my husband being next to my bedside. He told me that I had been in a coma for almost 10 days and I had, in fact, had two brain surgeries. The first surgery was for the resection of the meningioma. The second surgery was a resection of the right frontal lobe in an attempt to correct the problem causing the brain swelling from the first surgery.
Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A. I was so frightened. I had never had any serious health problems prior to diagnosis and was suddenly blind-sided by a brain tumor. I had teenage daughters who I tried so hard to reassure and be brave for, but I was sick with fear. The very worst moment for me was riding down to brain surgery. I knew there was no other way out, but I just didn’t want to go through it.
Q. What kind of follow-up care are you currently pursuing?
A. I have a yearly MRI to monitor for any possible recurrence even though my tumor was fully benign and fully resected.
Q. Do you still experience any side effects from diagnosis or treatment?
A. I have a lot of scar tissue in the frontal lobe of my brain and three years post surgery I experienced a grand mal seizure. Because of that I take anti-seizure medication and will most likely do so for the rest of my life.
Q. Who were your caregivers and how did you interact with them?
A. I had many wonderful friends and family seeing to my needs following my surgery, but my husband Ron was my hero. He had sold his business and retired the year before so he was able to care for me around-the-clock. For several weeks following my surgery I was severely weak and unable to do the least little things such as brush my teeth, walk or feed myself. He stayed by my side day and night and saw to my every need.
Q. How was your life changed by this experience?
A. The biggest change has been dealing with the effects of anti-seizure medication.
Q. Do you have any advice for people who are at the beginning of this personal journey?
A. Arm yourself with knowledge about your health concerns. Learn all that you can, and don’t hesitate to ask questions of your medical provider. Discover the latest and various treatment options. Find a support group either in your community or through an Internet forum such as Meningioma Mommas. Seek out people who have walked the road before you. Be comfortable and confident with the hospital and medical team you choose. Get second and third opinions. And most important, my personal faith compels me to encourage prayer along with spiritual support and guidance.
Q. Knowing what you know now, what would you have done differently, if anything?
A. I would have sought out second and third opinions (or more) concerning the state my brain was in with the excessive edema. I would have insisted on extended therapy to control the edema prior to surgery.
Q. How would you assess your quality of life today?
A. This has been a difficult journey for my family and me, but five years later, I am happy to say that I am living the best years of my life. I like who I am now far better than ever before. I learned things that no classroom or textbook could have ever taught me — compassion, strength of character, priorities and so much more. I have energy and a passion for life that I have never known. My life, my marriage, my friendships, my faith are all stronger and more meaningful that I could have ever hoped for. I also recognize that life is full of tragedy and heartache and I have learned to empathize, encourage and support others going through a life crisis. I believe there is a reason and purpose for everything. We choose how we are affected by what happens to us. I choose to be stronger from my brain tumor journey.