17 Year Survivor
It’s not often that you can say, “I am grateful for my migraines!” But if not for the migraines I developed while living in Seattle, Washington in my late 20s, I would have never have been directed by a neurologist to get an MRI to “rule anything else out.” It was only when the nurse called and asked that I come in the next morning to discuss the MRI results that I became a bit concerned. The next morning, the neurologist informed me that “something” had showed up on my scan and that he had made me an appointment that afternoon with a neurosurgeon to discuss my options. After meeting with the neurosurgeon it was decided that I should get MRI’s every 3 months to keep tabs on “the spot” and go on anti-seizure medications immediately as a precaution. This was all just a month before my wedding, and was the start of my 17-year journey of fighting a cancerous brain tumor.
This “spot” could be a bruise, a cyst, or a tumor. I went to get a 2nd opinion. This neurosurgeon told me that he was 99% sure that “the spot” on my MRI was just a bruise, probably from a fall when I was young. Preferring his diagnosis rather than the idea that it was a tumor, I chose to skip my 6 and 9 month MRI’s. I didn’t believe it was a tumor; I didn’t have any symptoms, and my headaches went away with migraine medication. Almost a year later, at the 1-year check-up, I figured I would go back and get one last MRI. Well, “that spot” had changed. Change isn’t good and the original neurosurgeon asked me which day the following week I would like to have brain surgery. A half shaved head and 52 staples later, I had the diagnosis of an Oligodendriglioma Grade 1. What I didn’t realize until a few weeks later was that an “Oligodendriglioma” was, in fact, Brain CANCER.
Because of the low grade and slow growing nature of this tumor, I only followed up with MRI’s every 3 months. This time I followed through on that recommendation. Truly, I believed brain “cancer” was behind me and my whole life was ahead of me. I didn’t think much about the tumor’s re-occurrence other than what became my annual MRI. For 5 years, I enjoyed life in Seattle, gave birth to my beautiful daughter, continued raising my son, moved back to my hometown in Oregon, and basically went on with my life. It wasn’t until the tumor recurred in 2003, that I feel my “journey with brain cancer” really began. I had returned to Seattle to have my annual MRI and wasn’t prepared to hear “Looks like the tumor is back.” Scared to death to go through another brain surgery, my family and I scrambled to figure out what to do.
Do we stay in Seattle for a few weeks and have my surgeon up there perform the surgery again?
How do we find a neurosurgeon to trust in Portland to perform the surgery?
Again, all of this without the resource of CEF. I didn’t know what I was missing. I recovered quickly from my 2nd surgery and set about my daily life raising a teenager and a toddler. Pathology came back saying it looked “basically the same” but was now being called an Astrocytoma Grade 2. For the first time, some “genetic work” was done, sending my tumor sample off to the Cleveland Clinic. In 2006, just 3 years since my last surgery, the tumor decided to raise it’s ugly head again! I spend my birthday in the hospital recovering from brain surgery #3.
Pathology came back and was still considered an Astrocytoma Grade 2. My neurosurgeon reports that he took a “bigger chunk” this time and seems pleased, although taking a “bigger chunk” of my brain stirs up some concerns, but life continues and life is good! January 2011 I have my annual MRI. Five years since my last surgery and I am excited to get over the 5-year hurdle, as I have yet to make it past the 5-year mark. Not so lucky! Surgery #4 is scheduled for the day after Valentine’s Day. This time pathology comes back and I am told the tumor is becoming “more aggressive” and is now believed to be an Anaplastic Astrocytoma Grade 3.
At a Grade 4 my tumor is considered a Glioblastoma, the same type of tumor that killed Senator Kennedy, my neighbor’s father, my sister’s friend’s father, my Dad’s neighbor, my husband’s dear friend’s father, and my best friend’s friend’s father. Not the news I wanted or was expecting to hear. Now was the time to hit this thing with 6 weeks of radiation and chemo! Check! Today, 3 years later, I still take Temodar, an oral form of chemotherapy, 5 days every month. My neuro-oncologist says I will be on it for the “rest of my life” or as long as my body tolerates it. With the help of CEF I have 2nd and 3rd opinions that question OHSU’s label of a grade 3, still labeling the tumor pathology as a grade 2, but so far I am tolerating my monthly chemo, so I stay the course! I am blessed! Seventeen years and I am still fighting, still healthy, and still living, but more than anything wanting to be around to watch my children and grandchildren grow up! My husband, Jeff and I have a lot of life ahead of us and I have too many things I want to do and see, so finding a cure for brain cancer is an important thing in my life.