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Life with a Brain Tumor- My Story

posted Oct 15, 2009, 8:02 AM by Ann Van Wagner   [ updated Mar 2, 2011, 5:24 PM ]
So, there it was in black and white. 
There was no mistaking what my own eyes could see.  The doctor was speaking to me, I could see his lips moving but I don't remember any of the other words.  As I looked at the MRI scan in front of me his first words kept repeating in my mind.  "You have a brain tumor...I'm so sorry."  His lips continued to move but my mind just did not register them.  A brain tumor?  A brain tumor??  How could that be?  This doctor was an ENT and I was there for vertigo with a suspected inner ear problem.  I followed him out of the office.  Again, those dreaded words,"I'm sorry."  I walked out of the office and into the bright Florida sunshine.  I remember walking to my SUV and thinking that this cannot possibly be true.  I climbed into the vehicle and sat there for a long time.  People were walking in and out of the building. A lady was riding down the sidewalk on her bicycle.  Everything in their life was normal.  I put my hands over my face wanting to just block out the world, however, nothing could block out the truth of his words.  I had a brain tumor.
 
For over a year I had been experiencing severe bouts of vertigo.  I saw several doctors but could not find an answer to this reoccurring nightmare.  Finally I contacted a specialized ears nose and throat doctor.  He ordered an MRI of my complete head, and we fully expected to find an inner ear problem.  To learn that you have been diagnosed with a brain tumor is nothing less than shocking.  At first it is actually unbelievable, and then the fear sets in.  I contemplated how to tell my family.  I have been married for twenty-two years.  From the moment I spoke those hard words, my husband was right there for me.  He was supportive and never let me think anything but positive thoughts.  He held my hand, and when the tears would not stop flowing, he held my heart even tighter.  He has been my biggest advocate and supporter.  He has been with me on every step of this journey and I will be forever grateful for his love, encouragement and support.  My two children, ages 12 and 16 handled the situation calmly.  My 12 year old son asked the big question straight up "will it kill you?"  "will you be dead?"  I answered him as honestly as I knew how, "I hope not."  That question is what got me motivated.  The paralysis of fear was wanting to take hold of me.  I had to get a grip on myself.  Knowledge is power and the best thing to do was to educate myself.  To that end, I got busy doing my research.
 
A meningioma is a type of tumor that develops from the meninges, the membrane that surrounds the brain and spinal cord.  The majority of meningiomas, that is 90% are categorized as benign tumors.  The remaining 10% are atypical or malignant.  Another fact is that this type of brain tumor most commonly affects women.  There are many different types of brain tumors and brain cancers.  Of all the types to be diagnosed with, this type of meningiome seemed the least likely to be cancerous.  I went from being shell shocked and devasted by the news to being educated and informed.  I began to gather as much information as  possible on brain tumors, and I spoke to everyone thae I knew about my diagnosis.  In my daily travels I learned that two acquaintances had brain cancer and had been treated or were currently being treated!
 
I made appointments with two neurosurgeons at two different hospitals.  I walked out of my first visit with an overwhelming feeling of depression.  The doctor was cool and indifferent.  He spent about five minutes with me.  He said that yes, I had a brain tumor and his suggestion was to watch it for the time being.  He glanced at his watch and walked out of the room.  Basically, I was just another number.  The second doctor spent time with me and provided a lot more information regarding brain tumors.  The office was old and dusty.   I did not feel comfortable.  Again, the feeling of despair.  Once you have a brain tumor ( and any type of cancer, I suspect) your days are not the same anymore.  I would spend hours on the computer researching brain tumors and brain cancers.  I worried everyday that I might have a seizure and then had nightmares about it.  I finally decided to go to the hospital that is rated number one in the United States in the field of neurosurgery, Johns Hopkins Hospital.  I contacted the hospital, submitted my scans, and then waited to hear back.  I received a phone call.  Yes, the neurosurgery department would see me.  They would connect me with a surgeon compatible with my type of tumor.  So began my journey.
 
Johns Hopkins Hospital is located in Balitmore, Maryland.  I live in the state of Florida.  My husand and I made plane reservations and arranged for child and pet care.  Several weeks later we were sitting in the waiting room of the hospital.  I was scheduled for another brain MRI with contrast dye.  I was nervous, and afraid of what the scan would show.  The hospital was great and I was able to go and see the neurosurgeon directly after the scan.  Once we entered the office the doctor greeted us with a warm smile.  I immediately felt at ease.  My neurosurgeon, Dr. Alfredo Quinones, was compassionate and empathetic.  He spent a long time talking with us.  He explained everything in detail and was the only doctor to ever tell me that our meeting was first about establishing a relationship between him, myself and my husband.  He explained the risks of surgery, as wll as the risks of taking a "wait and see."  After much contemplation we decided to wait for three months then do another scan.  I walked out of the office feeling more confident than I had in months.  At least I had a plan in place and a surgeon that was very experienced.  I did not know at that time that Dr. Quinones is a world renowned surgeon and has been  featured on a variety of programs (NBC, ABC, PBS etc.).  I felt very confident that I was in the best possible place.
Three months later, back at Hopkins, another scan revealed that the tumor was growing, and I had to make a decision.  Brain surgery is obviously risky.  However, waiting for the tumor to grow seemed even risker as it may eventually cause me to have seizures.  For me, the decision was a no brainer!  My surgery was scheduled for January 28th.  There are no words to describe waiting for brain surgery.  You begin to seriously think about your own death, and about all of the things that are important in your life.  I have a strong faith in God  and prayed.  I went into the surgery with a feeling of calm.  I was nervous but actually very happy.  I was glad the day had arrived.  I wanted this to be over with.  As I was prepared to go into surgery my husband kissed my face and I smiled at him "see you in awhile."
 
I opened my eyes.  I was in the ICU unit.  The surgery was over.  The meningioma was successfully removed.  I remained in the hospital for a few days, then moved onto a nearby hotel for another two weeks.  The horrible experience of having a brain tumor was behind me.  The biopsy results revealed that the tumor was benign.  That is when I cried.  Not only because I was so thankful that the tumor was not cancerous, but because I know the terror that other patients must face.  Patients that have the tough diagnosis of brain cancer.  The staff at Johns Hopkins Hospital were wonderful and I am grateful for the skilled hands of Dr. Alfredo Quinones.
My world was turned upside down.  I now know the feeling of being truly thankful for every new day.  I am instilled with a sense of urgency to  help others-to in some way give back.  Why?  Because I can.  I am one of the lucky ones.
 
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