Cyndi Douglas, 47, patient, from Springfield, MO
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.
Ron Douglas, caregiver
Q. How did you become a caregiver?
A. My wife was diagnosed with a meningioma, so after 20 years of marriage, it was time to honor the "in sickness or in health" portion of my marriage vows.
Q. Did you have any training? From what source?
A. I didn't have any training, although after Cyndi became acquainted with Meningioma Mommas, I learned a lot through her.
Q. What resources (or lack of resources) helped or hindered you / your patient?
A. Lack of knowledge about meningiomas definitely hindered both of us. For instance, if we would have realized the benign nature of the tumor, we would have taken more time to research hospitals/doctors/treatments etc. Instead, we did not know one brain tumor from another and we thought we had to act within a few weeks.
Q. What are some challenges you faced?
A. The biggest challenge was understanding the disease and figuring out what to do. After my wife had surgery, the recovery was long and my life had to change considerably during that time. Thankfully, she recovered fully and my life is back to normal, and we are enjoying each other very much.
Q. How did you interact with your patient?
A. I just tried to do everything I could to take care of her. She made steady progress and before long we were back to normal.
Q. What was the most difficult part to being a caregiver?
A. The most difficult part was the first few weeks, when I wasn't sure to what extent my wife would regain her normal functions. With time it became obvious she would heal and be as good as before, of which I am very thankful.
Q. How was your life changed by this experience?
A. It gave both of us a greater appreciation for life and for each other. My wife appreciates the dedicated way I took care of her, and I appreciate all the things she does even more than before the surgery. The best part is that my wife is more free spirited and less fearful now, so we enjoy things we never could before.
Q. Do you have any advice for people who are about to take on this role?
A. Seek all the information you can before you make decisions. The Internet has made information readily accessible, and groups like Meningioma Mommas are an invaluable resource. So don't panic, get all the facts and first. second and third opinions, and be confident you can beat the disease.
Q. Knowing what you know now, what would you have done differently, if anything?
A. The main thing we would have done differently was to not panic, seek information that is available and to take our time in making a decision about a hospital and doctors.
Q. What helped you the most during your caregiving role?
A. We had help from many friends and family, and our faith in God was the cornerstone that got us through the crisis. As powerful as modern medicine and science is, it is no match for divine intervention.
