Several months ago, before the cancer diagnosis, I bought a “back-and-forth” book for Norah and me to work on together called Just Between You and Me Kid. It is filled with fantastic conversation starters about our separate and shared life experiences from parent to child. One of the questions recently on my turn was “What is your favorite memory from when you were my age”. Going back to the summer of 1993, between my 5th and 6th grade years, we lived in a suburb of San Diego called Poway. What a place to be 90s kid. Everything felt possible then and things like cancer were never a concern. Our house was situated in a valley surrounded by mountains that were open to climbing at any time. Our neighborhood was new and there were always houses under construction, so myself and my best friends, Andrew Lane and Chris Reinhart, along with other kids, would take whatever construction trash we could carry on our bikes to build the most awesome mountain forts you can imagine. We would be outside most days doing some kind of crazy project, only to be called home when the sun went down or Eric Reinhart (Chris’ dad) would whistle down the valley calling us home. We would ride our bikes down busy roads 1.7 miles from home to a 7-11 where we would spend our hard-earned money on Slurpees, Atomic Fireballs and an Indiana Jones arcade game. The era of analog, when I connected to the Internet for the first time and hosted my own BBS advertised in the local classifieds. When my t-shirt said “No Fear” and the TV told us that a frying egg was our brain on drugs. It takes me back to the days when a song was worth so much more. You can thank Stephen Wilson Jr. for that line. If you’ve never heard of him, go listen to his version of Stand By Me.  

As I sit here typing this update with a broken heart and a body that has been bloodied, bruised, forever scared, unnaturally altered and purposefully poisoned all at the same time, it causes deep reflection on life and to press deeper into Jesus. 

Speaking of Jesus, let’s talk about the good news:

• My babies both got baptized!
• The tumor continues to shrink.
• It took four cycles, but I finally found a rhythm and timing/combination of meds that makes the side-effects of dual chemo drugs and dual targeted therapy drugs more tolerable, where I’m not struggling to stay hydrated.
• I have lost about 40 pounds since starting this journey, but a portion of this weight loss was due to muscle loss. Like Lance Armstrong’s cancer journey, I’ll have the rare opportunity to build back the way I want, but without the cheating.
• My last chemo infusion is scheduled for July 9, although I will need to continue trastuzumab and pertuzumab infusions for several more months. These have their own side effects that aren’t ideal, but will be better than those caused by docetaxel and carboplatin.
• I have advanced imaging, including an ultrasound and MRI scheduled for July 8, along with my second appointment with the surgeon who will be performing my right mastectomy, hopefully sometime in August.
  • During this surgery, they will be doing testing of the margins around what is removed for live cancer cells, of which we believe there will be none!
  • Part of this surgery will also involve plastics where scarring is hopefully limited and my chest will hopefully be left looking even.
• Given that there are no live cancer cells found, several weeks after recovering from the mastectomy, I will finally be able to have my colostomy reversed. I have developed a newfound respect for those who live with stomas full-time. For me, it has been a significant head trip. A part of my body that is supposed to be on the inside is on the outside, and although it is helping to save my life after my colon couldn’t handle the chemo, it is a constant reminder of how thankful I will be to have it removed.
• The support that I have received from family and friends has been incredible. Everything from the 3:30am call to my sister-in-law, Jessica, when my blood pressure dropped so low, I couldn’t sit up to all the cards, calls and texts I’ve received. Special shout-outs to:
  • Mom and Dad
  • Ty and Jess
  • My Nina
  • Uncle Greg and Aunt Joan
  • Gerri – I love your cards
  • Margie for the cards and book
  • Claire and Theo
  • Tyler and Sami
  • Gary and Jamie
  • Mike Dahlgren
  • Andy and Earlena
  • Jacki
  • Zach Garza
  • Juston Thompson
  • Susan Peters
  • Marshall Stewman
  • Selena
  • Jason and Aaron Clark
  • Pat Murphy and my entire roundtable of brothers
  • John Land from Oklahoma
  • Mike Burns for his regular calls
  • Mark Schleppi
  • KR, Mac, Kurt, Tom and Roby always offering time to talk tractors
  • Chris and Nicki
  • Robert and Zam
  • The entire Tusa Clan
  • My cousin Kim
  • My best friend from Minnesota, Amanda
  • Kathleen
  • Wyndi
  • My workmates

Now for the opportunities:

• Telos, the blockchain network I co-founded, has had two CEOs over the last two years who not only made poor decisions but also, through a series of activities that could be considered fraudulent, drained our operating funds to nothing. We knew there was a lot of money flowing out, but to what extent was hidden, and everyone’s contracts had to be canceled, leaving me without a paycheck. It is challenging to look for a job when chemo is so hard and two major surgeries are on the horizon.
• I need big prayers that there are no live cancer cells left during my surgery in August. If there are any at all, chemo will need to continue and I will not be able to have the stoma reversed.
• My kids, God bless them, are incredible and resilient, but this is still a lot to handle.
• Since the cancer I have is fed by estrogen, the doctors want to put me on estrogen blockers for five years to lower the chances of recurrence. This is something that I am struggling with because it is the standard treatment for women, and next to zero data supporting this treatment in males with estrogen-positive breast cancer. The side effects of these blockers in men are similar to those in women, including menopause like symptoms. 
• Due to being immunocompromised, I ended up with a case of shingles that lasted 2 months and was extremely painful on my left side. Thankfully, they never spread to my stoma area (but a yeast infection did!) and have since subsided, but since the chemo slows healing so much, I have a scar where every shingle appeared. My torso looks like a war zone.
• The hair on my head is starting to grow back, but extremely slowly, very thin and nearly 100% gray, which is a little bit of a head trip, no pun intended.
• My SpaceX brothers and sisters are on the struggle bus getting Starship to work and that kind of affects all of us. Need to see some success there.
• Danny, the very first male who reached out to me in support who was also diagnosed with breast cancer, passed away a couple of weeks ago and that was hard to hear.

I’ll stop there for now and leave you with a photo album from some of my favorites over the last couple of months. Beau turned eight a couple of weeks ago and got a little Savage Rascal .22 LR that fits him perfectly for his first rifle. Norah continues to thrive in her creativity, with a range of interests that include cooking, dancing, arts and crafts. Now every song, every moment with my kids, is worth infinitely more.

https://photos.app.goo.gl/DpsGx2Q7F4NGjZGRA

May you all be supremely blessed. 

JTB