Q. How was your meningioma discovered?
A. I was diagnosed in 1991 at the age of 26. For about six months leading up to my diagnosis I had what I thought were worsening sinus headaches. I was taking several over-the-counter medications to mask the symptoms. I was in a stressful work situation and one day after work I was rushing to meet a Realtor to look at a home. I found myself wanting to tell the Realtor about a strange tingly sensation on my left hand. I never got the chance. I awoke to find myself in an ambulance with the EMT putting smelling salts up my nose asking me if I knew who I was, I said; yes do you remember who you are? The EMT was a fraternity brother from college. That was weird. I wondered if he was going to offer me a beer.
I had experienced a grand mal seizure and was taken by ambulance to the Southern New Hampshire Medical Center, SNHMC, where after a battery of tests, a handsome J. Gerald Kennedy, Neurosurgeon with Dartmouth-Hitchcock Clinic in Nashua said, “There is good news and bad news.” The bad news was the brain tumor, the good news was it was benign, a meningioma. (I would soon learn that there is nothing “good” about a benign brain tumor as these frequently lead to life-long deficits.) Dr. Kennedy was a very compassionate doctor and could have told me anything and I would have been fine.
I later learned that the new fixed Magnetic Resonance Imaging Center (MRI) at SNHMC was dedicated to the late J. Gerald Kennedy, MD. He was diagnosed with cancer at the age of 45.
Q. How did you source your doctor?
A. Finding a doctor was an overwhelming experience. Everyone I knew had opinions on what facility I should go to for my care. Ultimately I chose to take the advice of a friend of the family who is a doctor and knew the Chief of Neurosurgery at Dartmouth Hitchcock Medical in Hanover, NH.
Q. What course of treatment did you undergo?
A. I have experienced several types of treatment over the past 16 years as a Recurrent and Multiple Meningioma Survivor. I’ve worked with five neurosurgeons in total, and I’ve had stays in the hospital ranging from two to sixteen days, the first being the worst. Tumors have ranged in size from 1 to 8cm. Four of six surgeries took place within the past year; I’ve had five craniotomies and one craniectomy. I have also had Gamma Knife Radio Surgery to treat tumors deep within the brain. Tumors were resected in the area of the Left Temporal and Sphenoid Wing, the Falx, Parasagittal and Superior Sagittal Sinus, as well as the Parietal and Posterior Frontal regions. Multiple Meningioma were Convexity in nature.
I’ve had four areas of bone removed; one with a titanium mesh replaced in the left Temporal Lobe and the other in the midline Parietal Region with cranioplasty. The two remaining bone flaps – located in the left and right Frontal Parietal Region – are each the size of a half dollar coin and were removed due to infection. These have yet to be replaced.
Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A. I often found myself educating my friends, family members and loved ones about brain tumors. For the most part, it seemed that when people found out that I had a ‘brain tumor’ they were shocked and didn’t understand what it meant. It was very different than if I had broken a limb – they couldn’t see the impact of the tumor on me physically, and the deficits were often subtle or unseen by others – although very real to me.
Recovery has been extremely frustrating due to the unseen changes. Let’s face it, our loved ones are the people who really know us – who know what we’re really like – and they are the ones that are impacted the most by our changes.
Q. What kind of care routine are you currently pursuing? Do you still experience any side effects from diagnosis or treatment?
A. Having experienced several challenges including grand mal, focal, tonic, and speech seizures along with aphasia and left-sided physical quirks; occupational, physical, and speech therapy have assisted me with post surgery recovery. Right now I am taking it one day at a time.
After my surgery in 1999 I was unable to move the left side of my body. This was very scary for me. To regain movement I resumed swimming with the New England Masters Swim Club; little did I know this would be ideal for my physical therapy. It allowed me to overcome the anxiety I was having with fear of motor loss and it was also mechanically important as it kept blood flowing to my lower extremities. Swimming gave me my independence back and I was able to strengthen my left side.
Additionally, I purchased a piano, a life-long dream. I took lessons for two years and to this day I play 30 minutes each day and have created my own music therapy!
I continue to be a huge advocate of my own self-care; however, I wonder when I should let up. I think it can be easier when you know less. It is very draining; the fatigue is mind-boggling to me. I am uncertain if it is caused by the varying medications or trauma from all of the surgeries. I am being patient. Reading, walking, visiting…I now have added “domestic engineer” to my resume and I am content with that. Like I’ve said, I take things one day at a time. I am looking forward to planting seedlings this year, another thing I’ve always wanted to have time to do!
Q. Who were your caregivers and how did you interact with them?
A. Over the years I have come in contact with some of the most amazing physicians, clinicians, patients and caregivers. My family has provided constant support and prayer throughout my treatment and recovery. In particular, my grandmother, "Gram", has played an integral role; as an R.N. I could speak with her and she understood many of the details of my experience and offered me her unwavering support and love. I’ve always been able to go to her for guidance and strength. She has also become the family’s “Communication Coordinator,” making sure everyone knows what is going on with my health. My sister and mother-in-law also served as a caretakers and patient advocates for me during hospital stays – often on short notice. Finally, Tom, my husband of nine years, has been my “bridge over troubled water.” Any time I have needed a lift, I’ve been able to count on my crane (pun intended).
Q. How was your life changed by this experience?
A. My life has changed – it is still good – just in a different way. It is in a healing mode at present. I have made several deep, personal relationships and share things in common with others that I never had before. I always wanted to have a family of my own to take care of; I just did not realize how large it would be. I thought it would be four boys. Aside from my husband and two male dogs, Boomer, 7 and Tyson 5 and my beta fish Valentino 1, I thought that was it. As it has turned out, there are many others worldwide that I now have to take care of and support through my participation and facilitation of The Meningioma List and other brain tumor advocacy initiatives I am a part of.
Q. Do you have any advice for people who are at the beginning of this personal journey?
A. One thing I’ve come to appreciate is how amazingly powerful the mind is and its ability to heal. I attribute my healing to being positive and wrapping my arms around the ‘T’ so to speak. I have always been an advocate for myself so I was able to assess and determine what the best approach was for me to go through each segment of my treatment.
Embracing hobbies has also been important to me throughout my healing process. They allow me to maintain my independence as well as utilize an enjoyable outlet to improve my brain functioning skills. Sports and exercise have always been important parts of my life. The experience of having my heart racing and a rosy, flushed face, while feeling my muscles burning because I chose to push myself to that limit are feelings I enjoy because I control them!
Ultimately, my advice is to stay positive and keep your chin up! Life is how we choose to go through each moment.
Q. Knowing what you know now, what would you have done differently, if anything?
A. Treatment for meningioma has come a long way since 1991. The medical and brain tumor community is finally beginning to recognize the significant impact meningioma have on people and the deficits these tumors can create. I recall that fifteen years ago primarily women in their sixth decade were diagnosed with meningioma and many were diagnosed at autopsy. Things are much different today. Research, pharmaceuticals, laser surgery, imaging and treatments have evolved. I wish they had pharmaceuticals that masked the symptoms of nausea from the anesthetic used in 1991. I will never forget the pressure in my head caused by the anesthetic - I thought my head would explode. Today, brain surgeries have you in and out of the hospital in three to five days – truly amazing!
On a personal note, I would say that I faced these challenges as best I could. Through prayer and the aid of my guardian angels I felt that my duty was to overcome these hurdles and become a voice of strength and encouragement to others. Each time I’ve overcome an obstacle I have been reminded of how important it is to appreciate life and to do the things I want to do. Plus, I can always hear my Mom saying, “Keep your chin up!"
Q. How would you assess your quality of life today?
A. In his final days, my Dad said, “I know you’ll be fine Kim.” I believe him, he is one of my guardian angels! Still, I am giving myself plenty of time to heal. I seem to be much more hypersensitive and have difficulty with things that cannot be visualized. I am taking it one day at a time. “Been there done that,” is easier said than done.
Some days I feel like I am in limbo, like purgatory, unsure what each day will bring. Other days I am able to challenge myself and push myself to do new things. I do not like wasting my time by watching TV; the news depresses me. Overall, I choose to do what I want to do - what I want, when I want. I laugh a lot, I cry a lot, and I feel angry less.
I am grateful for the friendships I’ve made through this experience.
Nancy Conn-Levin (a BSF Advisor and founder of The Meningioma List) has been a wonderful source of support and strength, as have the many others whom I’ve met through this journey that I wouldn’t have otherwise known.
