If I Only Had a Brain

There is something deeply visceral about your brain… It is the center of thought… It is the center of your being… it is the center of who you are

All of those aspects of the brain came crashing down around me late last week.  I had gotten a PET-CT scan to see how my disease was responding to my current therapy and there was a surprise. A bad surprise.  There was a bright PET spot lighting up against the background signal of my brain. A possible brain tumor.

Young Frankenstein Ab normal Brain

This could be a false alarm (PET-CT is not a good diagnostic method for brains) but it was a significant cause for concern.  A brain MRI was scheduled ASAP (9 PM last night).

Even with the knowledge that it could be a false alarm, this news hit me harder than anything since my initial diagnosis.  My cancer has taken away a lot from me, and it could potentially take more in the future but…. MY BRAIN??? MY SELF BEING??? MY MENTAL LAST LINE OF DEFENSE & WEAPON TO BEAT THIS DISEASE??? It was too much for me to bear.  I completely shut down in shock.

But after 24 hours of true shock, something amazing happened. My brain… under intense danger… came back alive.  Self-preservation neurons began to start firing again.  Self-preservation synapses were one by one brought back online.

New treatment flowcharts frantically began to be developed – done proactively because I was under tight timelines – this time incorporating the presence of brain tumors.  How to beat them and how they would impact my overall plans. Colleagues near and far were consulted, I called in many favors for advice.  I was truly heartened by the feeling of a true circling of wagons around me – it brought tears to my eyes on more than one occasion.  It still brings tears to my eyes thinking back to it now – I am truly blessed by the friendship, love and support that surrounds me!

The brain MRI results just arrived.  It had been a false alarm.  There were absolutely no signs of brain tumors seen in the MRI.

Young Frankenstein Scientist and Saint Brain

The adrenaline of the past few days is already starting to recede but impact of this experience hasn’t and I think it won’t.

I now know what it feels like to have your very essence of being under direct assault.  I now know what it feels like to have my primary weapon and my life’s last line of defense – my brain – almost taken away from me when I needed it most. But… I also now know the incredible safety net, literal and emotional, that surrounds me from so many people near and far – I am truly humbled…  From the experience of the past few days, I am a changed person.

In terms of the rest of the PET-CT scan findings, we are still working though ramifications on treatment plans and I hope to write up an update on that next week, once plans are decided and fully in place.

But until then, things are now looking brighter.  A lot brighter!  My brain is safe, I am surrounded by both love and support and for me, right now, that is all I needed to hear. I’ll get a good night’s sleep tonight, safe in that incredible knowledge.

To Life!


20 Comments on “If I Only Had a Brain

  1. You are a BRAVE man and I am so thankful to your for sharing your blog – makes me feel like I can brave my own storms with my incurable cancer!


  2. Keep fighting. I treasure your updates. My husband is a neuroscientist and has a very similar diagnosis. You give me hope.


  3. A wonderful post – and a wonderful scan result. I really appreciate that during a time you warned people you were going to be taking time off, you still shared, you still reached out, you still made sense of what was going on and you articulated the bigger issues in life, in community, and healing. This quote is so charged with hope (and insight): “My brain… under intense danger… came back alive. Self-preservation neurons began to start firing again. Self-preservation synapses were one by one brought back online.”


  4. Thank goodness,, I was in instant sadness and shock… Im so happy for you… so so scary,,,yahoo for another reason to be grateful…


  5. That is totally awesome news (PET scan false alarms are awful). Plan with your doctors and let us know your battle strategies when they are complete. You have a bunch of warriors to back you up. We are prayer warriors for you and all that you do.


  6. I have similarly horrified reactions to the possibility that cancer could move into that part of my body attacking the very seat of rationality. Who will I be then? Would that still be me? If I can’t think clearly, do I even want to stick around this planet? I’m grateful for your reprieve and for the support network you’ve built. I too am supported by a crowd of humane and giving people who surprise me every day with their stalwart loyalty. Thanks for writing about it.


  7. whew! this too shall pass!! oy vay, thank goodness!!! I cried, I laughed, I was so relieved…
    we need you and we all hold you high, you are a rock star.


  8. Tom…you don’t know me….but I have been following your treatment worrying and wondering how you were doing. I’m a RAT with FCC. I lost my 35 yr. Old son to this disease in 2014. We need you on our team to continue to fight for a cure. OMG I’m so glad you have a GOOD brain.


  9. I am so sorry you had to go through the fear of a false alarm. Thank you for sharing this good news with us. As I have commented before your blog has been such a wonderful help centering me(stage 4) as well as my husband(metallurgical engineer who has always been able to fix things but not this). When I mention you have a new post he says “good-the guy with the trees”. He can latch onto the science while I latch onto your giving heart.


    • “He can latch onto the science while I latch onto your giving heart.” I love that… I continue to be so glad that you both get something useful out of reading my writings… Take care, -Tom


  10. Tom, you give hope and encouragement to many patients, and give of yourself so selflessly. Your perseverance is amazing, and you certainly give inspiration. Thank you for allowing many to benefit from your scientific knowledge, but also from your caring and concern for others! Keep embracing life!!


  11. Tom, the universe really had me going with all the news from you this week. I am so grateful to know that you had a false alarm… someday these alarms will ring with joy for a cure and early onset to be a thing of the past.
    I think of our dear friends we have lost to this cruel disease and I could not bare to see you leave us …. your life makes me feel very spiritual and realize that there is a power much greater than cancer!


  12. So happy the news was good. Stay strong as you have all of us here and the universe supporting you.
    We are riding a similar ride and it makes it so much better to share, learn and hold on together, Stronger together.


  13. Very glad to hear the good news. I had a very similar experience 2 weeks ago. I fully understand how it felt. An experience I will never forget, nor will my family members. Cheers.


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