Cathe Woiwod, 48, patient from Carseland, Alberta, Canada
Q. How was your meningioma discovered?
A. Four years prior to the discovery of my meningioma I had had an MRI to look at the reason why I was experiencing both cognitive changes and apparent migraine headaches. The cognitive changes related to confusion and memory loss and "brain fog" appear to be related to my autoimmune troubles. It was also confirmed at that time that I also had classic migraine with aura, sensitivity to light, sound, nausea etc... There was no meningioma reported at the time.
This past January I was referred back to my neurologist by my rheumatologist when in passing I mentioned that the headaches were changing, that not only was I getting the usual left-sided migraines but I was also getting much different right-sided head pain and pain when leaning forward. These
headaches did not have any of the symptoms associated with migraine. I also had a strange sound in my right ear that would not go away. The MRI in
February confirmed the meningioma just above my right ear.
Q. How did you source your doctor?
A. I was referred back to the same neurologist that my rheumatologist prefers and likes who also works out of the same teaching hospital she has
admitting rights to.
Q. What course of treatment did you undergo?
A. I was not given an option. I was told that the only reasonable thing to do at this point was to watch and wait. I was however told that if I was
absolutely panic struck they would remove it but that it was felt that I had time to wait and should do so. My NS said she would leave it in if it were
her and that this surgery should not be undertaken lightly.
Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A. The diagnosis did not bother me as I am a Buddhist and my philosophy accepts that there is suffering in life and I believe I will rise above it and learn from it. I really had no emotional attachment to the news but rather a real fascination. The hardest part by far has been understanding the concept and rationale behind watch and wait. I can intellectualize it to death but on a gut level there's just something not right about leaving a growing tumor in your head even for one more day. I vacillate between being okay with waiting knowing that maybe down the road advancements might make surgery outcomes better for me and feeling ashamed with envy for those who have just undergone brain surgery. It's a strange thing.
Q. What kind of follow-up care are you currently pursuing? Do you still experience any side effects from diagnosis or treatment?
A. Because I am on watch and wait I am basically in limbo. I cope with the headaches, which come every week to ten days and stay an average of two
days. I avoid bending over especially repeatedly as it causes throbbing at the site and I have learned to cope with the sound of the "ocean" washing in
and out of my ear.
Q. Who were your caregivers and how did you interact with them?
A. I haven't had any as I have not had surgery. I have a good and supportive husband and a good brother and a best girlfriend who I can rely on when the
time comes. I have no doubt of that.
Q. How was your life changed by this experience?
A. It made me look at my spiritual beliefs more deeply, at karma, at the meaning of suffering and how truly lucky I am.
Q. Do you have any advice for people who are at the beginning of this personal journey?
A. Yes, take a deep breath and learn as much as you can. Surround yourself with a positive support system and try to focus on the many positive outcomes that there are at this time in history pertaining to the diagnosis of meningioma. It is a scary thing to hear those five words and to many it
feels like you are the only one but it is not a death sentence. I would urge any newly diagnosed person to join Meningioma Mommas of course because it is a life saver and there is nothing like connecting with people who have been there and who can calm your fears and listen to you because they know what you are feeling. I would tell them to hold on and be strong because the odds are very good!
Q. Knowing what you know now, what would you have done differently if anything?
A. Probably asked more questions at the second neurologist's meeting but I was so upset with way I was condescended to by the NS that I forgot half of my agenda. I will remember for the next time.:)
Q. How would you assess your quality of life today?
A. I would assess it as marginal as I live with chronic pain everyday and frequent headaches from this M. My migraines are now under control but the
medications I take their toll both with confusion, memory and fatigue and I can afford to lose none of those things as it is. My sleep is
disturbed and I am often kept awake. My attitude is great but my body is the pits....
