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Embracing Change & Living In The Moment!

Well friends, it's been a while and there are so many things that I want to catch you up on, and as you may have already guessed there are some recent updates regarding my health that I thought I would share here. Knowing me is knowing that I love life, love to share stories of a life well lived, and am very much a talker. Throughout the past 10 years I have also grown to appreciate a platform like this where I can share a few important details with people I love, and in the spirit of self care not have to have the same conversation 30 times 😎.


The headlines are:

  • There are two new small spots of cancer cell growth in my brain 🧠

  • I had surgery Thursday morning at Vanderbilt so that they can biopsy one spot, and determine exactly what is there, which informs exactly how to treat it. 💉

  • They have stressed that this is very treatable. 🙏

  • I am in a very good place, feeling extra grateful for Judith who is amazing ❤️


So how the hell did we get here....


This story goes back to early 2014 when I had a craniotomy at Vanderbilt and subsequent treatment through mid-2015. Thankfully the pathology of the tumor cells that were removed during the craniotomy in 2014 revealed rare mutations that have always put me on the more positive side of the spectrum of brain cancer - a unique spectrum to be on, trust me it is still striking to type! At many hospitals there is a multi disciplinary group of oncologists, radiologists, radiation oncologists, surgeons, and others who come together regularly as a brain trust to discuss and strategize care for abnormal cases. This "Tumor Conference" at Vanderbilt has been a part of my care since 2014, putting their brain power towards finding the best path for Justin. It truly is a humbling thought to know that at some of these meetings, this group of brilliant minds have spent time thinking about how to ensure I live a long and healthy life!  I am very grateful!


My treatment regime wrapped up in May 2015, and since then I have had regular MRIs of my brain every 6 months followed by an appointment with my oncologist to review the results. These MRIs always look for changes, which thankfully until very recently have not been seen. All of my scans were "good", "great", "stable", and "clean". It's always been what I consider my "confirmation of great health" appointments, which goes back to my mindset and different tools I use to manage my anxiety. Ultimately knowing that if there is ever a change, we want to know as soon as we can so that we can address the change in the most effective way.


In April of 2024 I had my first one year scan as I had been moved to annual scans due to the previous amazing 9 years of great scans. At first review the scans in April 2024 looked good, with one new spot "that is very likely nothing", and an agreement that we would scan again in 6 months this time. While I could rationalize that the new spot the doctor saw was in fact "very likely nothing", knowing that something had changed resonated with a type of resonance I never want to feel again. 


Fast forward a couple weeks to early May and I got a phone call from my oncologist letting me know that the Vanderbilt tumor conference had discussed my recent scans and suggested that we do an MRI of my full spine to either confirm or rule out that cancer cells had moved to my spine. So we scheduled a 90 minute MRI for the Thursday before Memorial Day weekend, and I began to process spending that much time in what I always call the "zen tube". The scan went well, and Judith and I were off to spend a weekend at the lake with our parents. When we saw my oncologist on June 3rd we learned that THANKFULLY the MRI confirmed that there is NOTHING in my spine! With that good news in hand the tumor conference discussed my case again and with the input of the Vanderbilt neurosurgery team, decided to schedule a biopsy of one of the new spots so that they can find out the exact genetic makeup of those new tumor cells, which will enable the team at Vanderbilt to prescribe the “most effective and least toxic treatment for Justin!”  


And just like that, things started moving much more quickly and Judith and I found ourselves meeting with the neurosurgeon the following week on June 12th.  That morning we all decided that we would schedule the “needle biopsy” via a craniotomy for the following week, and things continued to accelerate as I had labs, and pre-surgery calls with different doctors that day.  The plan as we learned was for a “way less intense” surgery than the surgery I had in 2014 so that they could biopsy the cells, before sending those cells to the Mayo Clinic for gene sequencing.  The gene sequencing results take about four weeks to arrive back at Vanderbilt and will reveal the exact mutations and cellular makeup of the cells in my brain.  From there, my doctors feel that there will be a variety of possible treatments, and again continue to stress that they believe this to be very treatable!  


As you can imagine, this has been quite a couple of months for me, Judith, and our families and it has been a great exercise in staying in the present moment and not getting ahead of the facts.  As with any exercise this hasn’t been perfect, though it has been really effective and has brought Judith and I even closer together than we thought possible!  Again, inserting tremendous gratitude for walking this journey with Judith, and for the love and support of our family and friends.  


While I know this may not be the news you had hoped to read today, I want you to know how grateful I am for YOUR support, for YOUR positive energy and prayer, and for how you all have impacted my life - and of course let’s not forget how grateful I am for how you all will continue to impact my life as we move through this chapter!  I will likely continue to post updates here, as I know I have more to say, and more positivity and hope to share with the world.  Chapter’s in our lives like this are wake up calls, perspective resets, and reminders that our time here in this life is short - even for someone like me that went through a similar journey ten years ago. I promise you that I have a renewed, impassioned commitment to do everything I can do to share hope, inspiration, and love with as many people as I can, for as long as I can.  It is in this work that I feel most connected to the divine, and in this work that I feel called; a calling unlike any other!  


Please feel free to reach out to me or Judith with any questions that you may have, and know that we are both feeling grateful for your love and support!  


Here’s to moving through this chapter together, as we continue to live a long, healthy, and joyful life!


-Justin

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