Here are the most frequently asked questions (FAQs) that folks have about my story:
When did you first notice a problem and what symptoms did you have?
Did you have surgery? If so, when? Did you have radiation treatments?
What was your post-operative diagnosis?
How did you determine what treatments to do after surgery?
What dietary supplements are you taking?
What side effects have you experienced?
Who is your doctor?
How have your wife and children been doing through all of this?
What has been the most difficult thing for you to deal with?
How can I help my recently diagnosed family member or friend?
Why do you refer to yourself as unremarkable?
When did you first notice a problem and what symptoms did you
have?
A series of severe, but short duration headaches began on 08 January 2004. Felt like a lot of
pressure suddenly building up in my head. They would subside as quickly as they began, and these headaches did not occur everyday.
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Did you have surgery? Did you have radiation treatments?
Neurosurgeon Dr. S. Sam Finn removed the tumor on top of my right Parietal lobe on 04 February 2004. One
month later, I began a six week conformal radiation program, along with concurrent Temodar therapy. A second surgery was required in August 2013, from which I have recovered for the most part.
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What was your post-operative diagnosis?
The post-op pathology report indicated that I had a giloblastoma multiforme (gbm), a “primary” tumor, which is one that originates in the brain, but
usually does not spread to other parts of the body.
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How did you determine what treatments to do after surgery?
Six weeks of conformal radiation with concurrent Temodar (a pill taken at home) after surgery was the standard protocol in
2004. For follow up treatments, I spoke to gbm survivors, read books, did my own research on the internet, visited MD Anderson, Duke and UT Southwest to
obtain multiple opinions. I also prayed for wisdom and discernment, as did my family and prayer partners.
Follow up began in March 2004 with 140 mg of Temodar per day for 14 days, along with 40 mg of Accutane. I then stopped the Temodar for 14 days, repeated the
sequence three more times, with a MRI capping off the two month cycle. I discontinued Temodar in the Fall of 2006, having taken it for 2 1/2 years non-stop, and
switched to Carboplatin and Avastin when the Tumor's recurrence was discovered in early June 2007.
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What dietary supplements are you taking?
I began taking an extensive list of supplements in 2004. Today, I take only a multi-vitamin occassionally.
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What side effects have you experienced?
Quite a bit of my hair fell out during radiation treatment; most of it returned within six months. Initially, there was a ringing in my right ear that would
come and go. The ringing ceased during the summer of 2006, but then it returned in 2011 and is now with me constantly. It is a relatively low level ring that I do not
even notice it unless I'm in a very quiet room. I do feel a bit fatigued from time to time. I had a seizure on 23 June 05 that has been
controlled with Keppra (1000 mg/day). I occasionally took a Kytril pill to suppress nausea, but doing this necessitates the use of a laxative. Constipation has been
the number one side effect.
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Who is your doctor?
My oncologist
is Virginia Stark-Vance, MD, a truly remarkable person who blends oncology with hope. She is up on the latest treatments and truly cares for her patients. Dr.
Stark-Vance's office number is 214-691-8283.
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How have your wife and children been doing through all of this?
The family is doing well. My three eldest boys are in college, my daughter is a senior in high school and Aric is a freshman in high
school. Kathy continues to run her AquaKids swim school business.
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What has been the most difficult thing for you to deal with?
My fears: Fear of the unknown. Fear of dying. Fear of leaving my wife and five children behind. I had a lot of head knowledge about
God and the Bible, and I was and am a Christian, but even studying the scriptures for three decades did not prepare me for this tumor, because I had not
experienced a life threatening situation before! But in my weakness, He showed me His strength. I have learned to trust the Lord more and to value each day given
to me.
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How can I help my recently diagnosed family member or friend?
Checkout the support page for several suggestions. Other ideas include, house cleaning,
laundry, yard work, maintenance, a night out, and basically anything that your brain tumor person enjoys. Ensure that they understand that there are long term
survivors of brain tumors. I'd be happy to speak to your loved one. Please ask him or her to send me an email with a phone number to
begin a dialog.
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Why do you refer to yourself as unremarkable?
The unremarkable tag is an important part of this initiative of hope. I am an ordinary, average, normal person; typical in every way. If I can survive a grade 4 brain tumor, then I see no reason why you cannot too.
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