Q. How was your meningioma discovered?
A. I was out of work on short-term disability in March/April 2003. I was having a difficult time walking by the end of the day, I wasn’t making sense when over tired, my vision was blurry. After many tests with no results the primary care doctor told me “it’s all in your head, go back to work” At the appointment I asked (actually insisted) to see someone about my headaches and blurred vision. She agreed to send to me a neurologist even though she thought it would be a waste of time.
The day I went back to work I got fired for not wanting to change my hours, but I knew I couldn’t make the 80-mile trip driving by myself. At the time I did not realize I was having panic attacks, but now I know that’s what it was. When I saw the neurologist he wanted to send me for an MRI because not only was I having headaches and blurred vision, but he said my gait was off. Three hours after my MRI, Dr. Bazemore called to say I had a brain tumor called a meningioma. He said not to worry, it was the “GOOD” kind to have and easy to remove.
Q. How did you source your doctor?
A. Dr. Bazemore sent me to a local neurosurgeon. This neurosurgeon really had an attitude of “Oh this is nothing and just live with it for a couple of years.” So I asked people I knew from my prior job for names of doctors in Boston. I went for two more opinions, one of which I scheduled surgery with. Although his attitude was the same as the others, he said it was up to me.
Q. What course of treatment did you undergo?
A. I scheduled surgery for September of 2003, but as I was being prepped the anesthesiologist said I was too sick with pneumonia and said no way could I have surgery. I had told the neurosurgeon over and over that I didn’t feel good, but he was actually going to do the surgery anyway! Thank God for the anesthesiologist; I just can’t imagine what might have happened.
Needless to say I decided to get another neurosurgeon and hospital. This led me to Dr .Black At Brigham’s. I had a growth spurt from September 03 to January 04 so Dr. Black advised me to have it out. I had surgery on March 22, 2004.
Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A. Hearing that I had a brain tumor brought back memories of a family member who had brain cancer; she died within seven months of diagnosis. It made me scared for my children not knowing what might happen to me.
I have to say once we met with Dr. Black and his group I felt very calm about my treatment and knew it would all be OK. My recovery was a little more difficult than I thought but it was mostly the dizziness, nausea and not sleeping. I did have VNA and a good support group at home.
Q. What kind of follow-up care are you currently pursuing? Do you still experience any side effects from diagnosis or treatment?
A. I am seen by my neurosurgeon once a year at which time he does an MRI. I also have a neurologist who I see every three months because of seizures. Also have other medical issues some of which may have been from surgery but hard to say. I have had to be on several different AEDs due to allergic reactions or they just didn’t work for me.
Q. Who were your caregivers and how did you interact with them?
A. My fiancé, Jim, and my daughter were the two people that watched over me, but after two weeks I was able to be alone during the day. I did have VNA ,PT and OT for the first six weeks after surgery. Living in the country without public transportation I was thankful to have their services available.
I knew when I was doing too much because Jim and my daughter would tell me to slow down!
Q. How was your life changed by this experience?
A. My whole life has been turned upside down. Being a mother to four children and divorced, I worked to raise them on my own. I am a type “A” person who has to do everything myself. It’s hard to give up your independence to a brain tumor. When I heard it’s the easy kind to get out, I figured OK, that’s good, not knowing at the time it was not really the “GOOD” kind to have.
I was never a sick person and now it seems I have something new coming at me all the time. I developed a thyroid problem, went into full menopause, gained weight, have cognitive issues/ short-term memory problems. When I had a neuropysch test done the results were that I wouldn’t be able to work, I was very depressed. So I am also on an anti-depression medication.
Q. Do you have any advice for people who are at the beginning of this personal journey?
A. I would say “Be your own advocate.” It is very important to listen to your body. Do not walk away from an appointment with unanswered questions. Bring a notebook and someone to all of your appointments — it helps not only to have the support, but the other set of ears. I know that it’s easy to get overwhelmed and walk out, forgetting everything you just heard.
If you are not comfortable with the first opinion, do not hesitate to go to another doctor. Find a support group; it really does help to talk to other people who have or will have surgery. Don’t shut out your family. This is hard for them too; they may not show it, but it is.
Q. Knowing what you know now, what would you have done differently, if anything?
A. I would have had a neurologist. I didn’t realize that I needed to stay with Dr. Bazemore to follow up with after surgery. I was lucky that my neurosurgeon was available to answer questions and take care of meds when I needed them.
It is important to have a neurologist to also follow any non-surgical treatments such as seizures, depression, general well being. Your neurologist should be someone to keep the other doctors apprised of any and all treatments. It’s important that they all keep in touch.
Q. How would you assess your quality of life today?
A. There are so many things that go through my mind with this question. I lost my job, my car, my independence. I can’t drive. I can’t work. My cognitive abilities are gone, as is my short-term memory. I walk with a cane. I have seizures. I take 6 medications and I never had to do that before. I just got approved for SSDD and realized life will never be the same!
Although everyday when I wake up, put my feet on the floor, open my eyes, hear my dogs barking and smell the fresh air I realize how lucky I am to be here. I have a wonderful man that stands by me and has been my rock! I have my four beautiful children who “love, me for me” even though I may not be the same old mom. I am blessed with a wonderful team of doctors who take excellent care of me.
I found the best support group in the world, knowing that anytime I need to ask a question they will be there for me. They have helped me through some very tough days, always understanding when no one else did. I don’t know how I would get through this journey without them.
I always say “life will never be the same” but was it ever meant to be. Life is a journey and mine took a road unknown, but I know it will be OK.