Q. How was your meningioma discovered?
A. I went to the ER after getting “lost” in Target after having experienced the worst headache of my life the day before when visiting my grandmother at the hospital. Hospitalized for possible TIA, etc. CT scan – nothing. MRI showed 2cm meningioma in posterior fossa. Hospital doctor said “I doubt that they will find anything” with a smirk – like I’m nuts or something, only to have to come back two days later and say “I’m sorry, but you have a brain tumor”… Thanks for the compassion!
Q. How did you source your doctor?
A. The staff neurologist at the hospital I went to referred me to my surgeon.
Q. What course of treatment did you undergo?
A. W&W at first, then craniotomy after suffering continuing symptoms and finding Liz at Meningioma Mommas and listening to her input…Thank God for Liz!
Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A. It was shocking to discover my deficits or limitations and to begin to adjust to them. I am still adjusting over three years out from surgery. The other hard thing has been the lack of understanding and compassion in the medical community. Side effects of drugs. Misdiagnoses due to misunderstanding of the disease.
Q. What kind of follow-up care are you currently pursuing? Do you still experience any side effects from diagnosis or treatment?
A. I have given up on getting any real help from the medical community. It seems that they have nothing to offer me. The last neurologist I saw (4th one) walked out of his office when I started crying. So, I am in counseling and finally started anti-depressants. This seems to help me cope and get along with others better.
Q. Who were your caregivers and how did you interact with them?
A. My husband and my daughters were my caregivers. They have been such a blessing. So patient, kind, understanding. Even though there are many, many times when I have been unreasonable, irrational, misunderstanding, etc. They have gone through so much with me and I am just so thankful that they have not given up on me. I am really blessed by them.
Q. How was your life changed by this experience?
A. I went from raising a family of five kids, working full time, earning over $100,000 a year, living a very busy life to now being on disability, spending the majority of my day in my room where it is quiet. This has rocked my entire life. I feel as though I have started over with almost everything. I went from independent, self-motivated, self-directed, sharp as a tack, full of energy, little dynamo to dependent, slow, unable to understand a lot, not able to do a lot on my own, not driving anywhere far, grocery shopping once a month in a quiet little store where I can see all four walls, stuff like that.
My schedule is sparse, and I only have one child left at home. I’m unable to babysit my grandkids alone. I burn things and have to use timers when I do anything. I have started fires when cooking, all sorts of crazy things. Thank God my family has a sense of humor.
Q. Do you have any advice for people who are at the beginning of this personal journey?
A. Seek the best medical team you can find. Get a baseline neuropsych test. Find a rehab facility. Get into counseling. Find a great support group like Meningioma Mommas. And learn to take it ONE DAY AT A TIME.
Q. Knowing what you know now, what would you have done differently, if anything?
A. I would have sought a great medical team and stayed in counseling throughout the entire process. I took this entire brain tumor thing way too lightly and did not even have a clue as to what I would be experiencing after surgery.
Q. How would you assess your quality of life today?
A. My whole life has changed. Plans are something of the past. I never know what I can do until the moment comes. EVERYTHING is harder (physically and mentally) and some things are not only impractical for me to attempt, but impossible for me to accomplish. I have had to learn to deal with my limits. Accept them. Pace myself. And count my blessings of which there are many. There is something to be said for a simpler life, a slower pace. And I do feel very blessed to be experiencing this slower, more simpler way of living. I just wish I was better understood by the rest of the world.