Q. How was your meningioma discovered?
A. I was always a busy person. I had been working toward my Ph.D. for several years and the end was in sight! But there was just so much going on. About five months prior to my diagnosis, I had flown to Florida for a wedding. Being a university professor, I had taken papers to grade. I noticed that my penmanship was awful, but blamed it on having no desk to use. After the trip, I was occasionally “losing” a word I needed in conversation. I remembered the word in a moment or so, but this problem continued to worsen. I started losing phrases and found myself planning what I would say so that I would have a substitute word or phrase ready or sometimes, I just kept quiet. My family really noticed that! I had always been “involved” and my personality was definitely changing. I no longer seemed interested in activities; I was tired all the time and had to force myself to “act” interested in activities so no one would notice I wasn’t fully participating. I became extremely emotional and would get teary over commercials! My family insisted something was wrong with me and nagged until I agreed to see our family physician.
Q. How did you source your doctor?
A. From our discussion, my family physician recognized there was a neurological problem, though my neuro exam was apparently normal. He ordered an MRI the following day. When the MRI was completed, he was waiting and called me into the “viewing” room to show me the scan. He pointed out a large tumor in the left frontal lobe and said he wanted me to see a neurosurgeon the next day. I had a lot of edema, so was started on steroids immediately.
Q. What course of treatment did you undergo?
A. Four days after my appointment with the neurosurgeon, I had a total resection of an 8 cm atypical meningioma. While still in the hospital, my neurosurgeon informed me that he had also diagnosed an additional 1.5 cm parasagittal meningioma that he had not removed. Apparently, it adhered to the sagittal sinus and resection would be too risky. He explained that if it needed treatment in the future, we should consider Gamma Knife. He planned to monitor me closely anyway as my resected tumor was atypical. Atypical tumors have a higher rate of recurrence than typical tumors.
I developed a post-op infection and had to have three additional surgeries over the next few months. The first was about 7 weeks after my first craniectomy and it was to remove the bone flap. I remained on IV antibiotics for about 7 weeks. During that time, I had a third surgery to revise my incision. Three months after the antibiotic therapy ended, I had a fourth surgery to replace the bone flap.
Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A. For me, the initial uncertainty was very difficult. I was trying to explain to my family something I didn’t understand, yet being the nursing professor, I had always been the one to provide the medical explanations. Later, it was difficult to trust myself to recognize “normals” and “abnormals” when I knew that I had previously ignored such serious symptoms. That was especially true when the infection was developing. I was fairly certain that something was not quite right, but allowed myself to briefly believe that I had just reached a recovery plateau.
These days, the difficulty lies in the period just before my six-month interval between scans ends. I’m always ready to get the next scan over with! Watching and waiting for the next stable report never becomes routine.
Q. What kind of follow-up care are you currently pursuing? Do you still experience any side effects from diagnosis or treatment?
A. I currently get MRI scans every six months. About 1 year after my initial diagnosis, I was diagnosed with a third meningioma that lies in the high right parietal region. It is only 8 mm and has not changed since the initial diagnosis. That is another reason that watching and waiting is never “routine” for me. I feel like my life has gone on, but I never want to take it for granted.
I am also on seizure medication for precautionary measures. Though my extended EEG could not definitively rule out seizures, it did show some abnormal waves. For the present time (perhaps forever!) I’m taking zonegran 300 mg. I may actually have simple partial seizures as they seem not to happen on this dose. I feel very fortunate not to have any other side effects from my initial diagnosis or treatment.
Q. Who were your caregivers and how did you interact with them?
A. My son and daughter were both grown and married when I was diagnosed. They were each able to spend time with me when my husband was at work. My son actually washed my hair for me! I was also fortunate to have meals brought in by friends, family, and members of my church after each surgery. It was hard, at times, to allow myself, the caregiver, to become the one being cared for. But when fatigue set in, I was grateful for the extra help.
Q. How was your life changed by this experience?
A. I’m more appreciative of every day things. I enjoy just doing nothing sometimes and I don’t feel it’s time wasted. I have become an advocate for brain tumor awareness through Meningioma Mommas and in my local community. I believe I have become more spiritual as a result of my experience and though I don’t want to die, I am much less fearful of death than I was before I had a brain tumor. I appreciate friends and family every day.
Q. Do you have any advice for people who are at the beginning of this personal journey?
A. Reach out to others who have already taken this journey. No matter how much you love your family or they love you, unless they have had a brain tumor diagnosis, they cannot truly understand what you are feeling like someone can who has been there. Though each person’s experience may be different, we who have lived the experience can each help another person navigate this strange journey. Look for a local support group or an online group such as Meningioma Mommas (Men are welcome, too!). I remember for the first several months asking my neurosurgeon’s office if there was a support group and being put off. Finally I found MM. Later, I was able to become part of a local group as well. Both have been important in so many different ways to my well-being. Both groups have lost dear members, but if we don’t open ourselves up to others on this “journey”, we miss out on so much that we may never know of.
Q. Knowing what you know now, what would you have done differently, if anything?
A. I can’t say I would have done anything different except that I wish I would have sought treatment sooner in order to spare my family the terrible summer they must have had with me when I was in denial. Other than that, I can’t live with regrets. I couldn’t imagine that I would ever be diagnosed with something as “exotic” as a brain tumor. If so, surely I would have sought medical help sooner. Once I was diagnosed, I’ve been a pro-active member of my own health-care team.
Q. How would you assess your quality of life today?
A. My quality of life is very good. I did complete my Ph. D. (between surgeries!) and continue to teach nursing at the University. I believe that being on Watch and Wait for my remaining tumors is not much different than knowing I had an atypical tumor that could recur. No matter what, I continue to have scans every six months. I believe that anyone who has had brain surgery is on Watch and Wait for the rest of their life. Hopefully, the other shoe will never drop. If it does, I am well educated on my options, and I have surrounded myself with a strong support system to help me through whatever waits!