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Surviving Glioblastoma: I am the Four Percent

Four out of 100. That is the survival rate for stage 4 glioblastoma: four percent. 
BY Lori Luedtke
PUBLISHED May 23, 2019
Four out of 100. That is the survival rate for stage 4 glioblastoma: four percent.

Seven years ago, I was received a diagnosis of glioblastoma. It started with severe headaches, confusion and erratic behavior. My close friend, Randy, Chief Emergency Medical Officer for Florida Hospital, encouraged me to go the Emergency Room. After an entire day in the Emergency Room, I was diagnosed with migraines, given an appointment with a neurologist for the next morning, who sent me to get an MRI and then home to wait 10 days for the for the MRI results. My husband received a phone call, two hours after I had left the hospital, asking me to return. It was there I sat staring at the MRI scan, facing the toughest news of my life. There was a large tumor on my frontal lobe. It was in that office that my life changed.

I had limited time. There were only a few days to prepare for surgery. Divine intervention came in the form of friends and family who rallied to help find a neurosurgeon. When Dr. Melvin Field came into the room on the day of surgery he said, “I don’t know who you are, but you must be very important.” While I was fortunate to have the best doctors and equipment available, after a seven-hour surgery and a 97% tumor removal, I was given only two months to live.

We did not accept this. While still completing standard of care, which is radiation and chemo, my family set out to find help and did so through a double-blind study at the Moffitt Cancer Center in Tampa, Florida; while it offered hope, the treatment hurt so badly I almost quit. There was no guarantee that I was receiving the “magic juice” or that it would even work. I felt defeated and needed strength to continue with the trial. I prayed and prayed and prayed; slowly, I noticed an improved quality of life.

I started celebrating every victory, no matter how small. I gave myself a parade for every little achievement. When I no longer had to take the giant horse pill I could barely swallow, a mini-parade. In September 2012 when I finished my final round of chemo, a big parade. In January 2015 when I finished my treatment – parade. Year five we celebrated Cinco de Mayo-style with my friends, family, neighbors, nurses and fellow cancer survivors with the biggest parade yet. This year I will be celebrating seven years in the Bahamas.

I believe I was saved to give hope to others. I have been able to speak with, educate and encourage others who are suffering similar struggles.

Glioblastoma typically continues to grow back; however, mine has not and I believe it never will. This journey has made me stronger. It has made my faith stronger. I am still here, even though the doctors said I would not be.
Four out of 100. That is the survival rate for stage 4 glioblastoma. I am the four percent.
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