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Brain Tumor Survivor: Tom S.

Last Updated: 10/11/2015

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!

Update 7/22/2010:

In March 2009, I had a grand mal seizure. Between that, the meds and some other issues I could no longer work full-time and retired in June of last year. I also applied for and qualified for disability. Fatigue and mental sluggishness have been issues. It is manageable and the good news is my health is otherwise good so long as I am careful about what I do. I have done physical therapy to help address some of those issues, like dizziness, balance and gait. I also did a neuro-pysch test which showed reasonable stability compared to the test done seven years ago. I did find it interesting that the test really could not cover some of my more significant issues like the speed and comprehension of my reading - both down noticeably. I also struggle somewhat with verbal instruction and memory, especially if it is complex.

Of course, the best news is I remain tumor free eleven years after the initial diagnosis and treatment.

I am still engaged trying to help others and that has been extremely gratifying. While there are many new treatments and new knowledge there remain fundamental truths about this disease that can be better explained by someone who has gone through this as a patient.

Update 2/8/2011:

I continue to enjoy my retirement and have had no serious health issues related to my tumor or treatments. I get satisfaction from assisting persons with brain tumors and their families.

Update 2/21/2012:

I continue tumor-free and with no significant health issues. I did start on a CPAP machine last August, not for sleep apnea but for shallow breathing. There was a suggestion it was a brain issue, i.e., some lack of signaling, but I have not had a definitive answer.

I remain actively engaged in the brain tumor community, primarily working with brain tumor patients and their families Besides VirtualTrials, I am in a Facebook group that has grown to over 300 people in just a few months and just found the site which is somewhat similar to the VirtualTrials on-line support group. It does have a brain tumor group and uses threaded conversations. Also, you can search the site on a topic and find related conversations.

I am also very active in our Boys and Girls Club.

Update 7/20/2012:Tom S.

My medical status is unchanged - tumor-free since 2001. I receive an annual scan and follow-up with my neurosurgeon. My health is good. I started walking in January with an initial goal of an average of 10,000 steps per day during the week. I was up near 20,000/day and since dropped to 15,000/day. Between January and July I lost 22 pounds. I also was more careful watching what I eat and in moderation.

By the way, I'm often asked whether I had any special diets or alternative treatments during my regular treatments and the answer is no. I have no idea whether anything else helps or not but I would take the advice for physicians - first do no harm.

Update 1/28/2013

Nothing has changed since the last update. I did start being involved with Cancer Hope Network. As always, I am gratified I have the chance to reach out to brain tumor survivors and family. I just wish those chances were fewer and farther between.

Update 7/10/2013

Things remain pretty much status quo medically. I had an annual scan and visit with my neurosurgeon in April - no sign of tumor and no other changes. I receive two or three referrals a month from Virtual Trials, Cancer Hope Network and Immerman Angels. Very little of the conversation is about the treatments themselves. Most of it is about what people hear from their medical team, what meds they are on, how they or their loved one are doing and other issues they are dealing with. It is clear to me the need for this is immense. I am surprised at how often patients are not given support and encouragement from their medical team and even family and friends. I believe some of this is because brain cancer is is about who you are and where your tumor is and what treatments you have had that can change that, sometimes dramatically, at least to the observer. And the patient is experiencing the new normal, which can be so far removed from the old normal. It is good to have survivors as a resource but more should come from the medical community. My prayers for all brain tumor patients and those who love and care for them.

Update 1/25/2014

On the GBM front, I continue tumor free with no changes in mental or physical health, just a very mild case of the flu during the holidays despite a flu shot. Who knows how bad it would have been otherwise.

As a 15-year survivor, I do think back over this long journey and what my feelings were at different stages. I have thought about, and continue to think about, my brain and what the long term impact is of surgery and treatments. The encouraging thing is that there has been a lot of work and research to help those facing these issues. As with everything else about these disease, there is always hope.

We have a friend who worked with my wife and retired several months ago looking forward to everything she planned in retirement with her husband. Unfortunately, he was diagnosed with GBM a week later so I have watched him deal with this and her provide for his care. Unfortunately, his path has been much harder than mine but I do have hope he comes through OK but the chemo has been hard.

One unfortunate thing I hear too often is the message conveyed to patients when mention is made of survival statistics. Are they good? No. But they are much better than when I was diagnosed 15 years ago. Long-term survival was like the unicorn - a mythical creature. Just looking at survivor stories tells a tale. When people mention the stats, I remind them that the stats are from five years ago because that is the nature of these. And they are the median, so half live longer and half less. I choose to be in the better half. And being aggressive in seeking treatments and solutions can only help. And take care of your physical and mental health - give your body the strength to fight this disease with all it possesses. Stay informed and no site is better than this one for that.

Finally, manage your docs and your care. If you are not sure you are getting the best, don't settle. Go find it wherever and with whomever it might be.

Update 10/25/2014

I continue tumor free and in generally good health. I also regularly communicate with persons with GBM or their caregivers, offering them information and hope. I always refer them to the Virtual Trials site as the best, most comprehensive resource. I also have been blessed to become a grandparent for the first time and there truly is nothing like it in the world.

Update 2/2/2015

Things continue to go well medically with very few changes since the last update. Family remains central to my life, especially Peyton, our ten month old grandson. He is special and something I never could have imagined 15 years ago when I was diagnosed. Volunteering is something I find great satisfaction in, especially our Boys and Girls Club, where I get to see us make life better for so many kids in Jefferson City. After all the love and support I have had over the years it feels good to give back and make a difference for future generations. I am truly blessed.

Update 10/11/2015

My health remains essentially unchanged from the last update. I remain in awe of all those who deal with brain tumors. One can only be encouraged by all that has transpired over the last few years. I feel there is more cause for help than there has ever been.

The biggest change in my life has been my grandson, now 20 months old. Just about the best thing about being a long term (16+ years) survivor. Family is what it is all about for me.


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