On Nov 18, 17 years ago, I was operated on by Dr. Rafael Tamargo at Johns Hopkins Hospital. That brain tumor was a mixed glioma (ogligodendroglioma/astrocytoma). It was 3.5 cm tumor located on the brain stem with single cell cancer strands growing around and into the brain stem. Post surgery I was told I wouldn’t live a year. Second opinions from Duke University and the National Cancer Institute at the National Institute for health said the same thing. I completed radiation and 4 rounds of chemo before making the decision to stop chemo against my doctors advise. The last 17 years this tumor has shown no new growth on MRI’s. Thank God.
I developed a new growth between C3 and C5 a year ago. The neurology team at Johns Hopkins are spit. Some are convinced it is scar tissue from radiation. The others believe it is a low grade glioma. It isn’t growing so for now they are closely watching it.
That brings us to monster (tumor) #3. It is located in the left front medial temporal lobe. Close to my amygdala. The amygdala is the brains fear center. This tumor is growing and has a “mildly herniated uncus”. It is shaped like an egg and is about an inch. This tumor is causing seizures but not the kind you are probably familiar with. They last about a minute and consist of a sudden wave of nausea and tingling. But the worst part is the sudden irrational fear.
Dr. Weingart and Dr. Tamargo at Johns Hopkins are removing #3 on October 2nd at 7:15 am. They want to remove it before it grows any larger, develops more or increased symptoms, or becomes “angry” or herniates further which could be fatal. After the surgery they will be able to study the tumor to learn more about #1&2, and the future through tumor genetics.
I spent all of my savings and retirement on medical expenses on the first tumor and have been on disability since. This is anticipated to be a large medical expense above and beyond Medicare. I am blessed that some very generous and kind people have expressed a desire to contribute. I can’t find adequate words to express my gratitude and I pray I have the ability in the future to pay it forward.
My sister, Linda Wilson, is flying in from Kansas City and will be keeping this site updated through this surgery. Please remember me in your prayers and send any positive energies you can spare. Thank you so very much.
Dr. Weingart (surgeon) will be assisted by Dr. Tamargo (surgeon who did first brain surgery). Dr. Weingart's office has received Pre-Op from Dr. Eden (PCP): Everything looks good. Dr. Weingart needs to schedule MRI at Johns Hopkins for brain mapping for the surgery. Waiting to here when. Surgery is scheduled for 7:15 am on October 2. Have to arrive before 5 am.
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