Tom S - Diagnosed in 1999 with GBM IV

Tom S - Diagnosed in 1999 with GBM IV

Tom S

It started with small things, mostly visual. In March, 1999, I traveled to Washington DC for a meeting, then on to Ft. Lauderdale to meet my family for spring break.

On the trip to DC I could not find my boarding pass shortly before boarding. When I left DC the same thing happened. I just thought I was getting very careless and gave it no more thought.

In Ft. Lauderdale more visual symptoms cropped up.

At a spring training game the scoreboard did not match the action on the field. When I cam back from taking my daughter to the bathroom I had a hard time finding my family. When we drove back to my brother's house I stopped and had him drive because something did not seem right. Other things cropped up. I type with two fingers while looking at the keyboard. Instead of the "a" key I kept hitting Caps lock and realized I was "shouting". When reading I realized I was missing words. My wife thought I had had a stroke.

When I returned home, I called my doctor at home on a Sunday (yes, he is that kind of doctor). He had a scan set for Wednesday, my wife and I saw the neurologist and neurosurgeon on Thursday and the surgery was Tuesday. I had radiation and chemo (BCNU) as well as stereotactic radiation. I was very fortunate to be at University of Missouri Hospital, a teaching hospital. Other doctors might not have been so responsive to my symptoms.

I had a recurrence in 2001 with successful resection during which they implanted Gliadel wafers.

In 2002, they thought I had another recurrence but it was only scar tissue and radiation Necrosis. I went out of network to UCSF for that.

My only issues since then have been medications and a small Seizure in addition to a minor impairment to my left side peripheral vision. I continue to work full time, now at the State of Missouri. I know how blessed I have been and I try to help others who are impacted by GBM and other brain tumors.

When I turned 50 I told people there was a time in my life I never wanted to turn 50 and now I couldn't be happier turning 50. I have learned a lot of things from my experiences and these are just a few of them:

  • You learn quickly who is not comfortable with their mortality.
  • Have someone with you to listen, ask questions and remember. A couple of times the neurosurgeon responded to my wife that no one had asked him that before.
  • Don't fear knowledge. As my wife said many times," There is nothing you can tell us that is worse than we can imagine".
  • My shorthand for it is that I visit the future but I don't stay there.
  • God does not do these things to us. He gave us the gift of life which brings uncertainty and good and bad things. When tough times hit, He can comfort us much as we can comfort each other.

Update 11/14/2007:


Nothing much has changed since my original submission. My health is still good and I continue to work full time and enjoy it.

I have gotten more involved with several web sites and email groups – NBTF Message Board, ABTA Sharing Hope Stories and CancerCare Online Support Groups. These activities help satisfy my need to help others living with Cancer, especially brain cancer.

Update: 6/7/2008:

I was featured on CNN!

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