Dr Brane Fart - 9/11/2013

We all know September 11, 2001 to be one we’ll never forget, burned forever in to our brains, where we were at and the absolute shock and disbelief we felt when we heard the news about the terrorist attacks.
Rewinding back to August 2013, Madison required emergency because two vertebra in her neck were severely compromised and had collapsed in to her spinal cord. Before surgery, we validated her surgeon’s expertise and yes, he’s the perfect person at the top of his game. He mentioned three words, a very friendly looking mass, growth and lesion but never said tumor or the potential of. When asked, he reiterated that it’s very harmless looking, has seen it quite a few exactly like hers and had no concerns whatsoever confidently closing that he’ll send it to pathology to confirm after surgery, more of a formality which was on August 23, 2013. 
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On Sept 10, 2013 Madison and I went to the doctors because pathology results were in. The result, Chondroma, a benign cartilaginous tumor. #benign, non-cancerous, whoop whoop! All of the relief, joy, renewed spiritual faith, and relief that Madison can get on with college and her life. 

​The following day, Madison was at her mom’s house, home alone for the first time since surgery. I was at business lunch with vendors and colleagues when Madison called, right after her primary care physician called her and told her it’s not chondroma, its actually chordoma, so she’ll need to see an oncologist. Stuck at lunch, I spent about 30 minutes outside of the restaurant taking to Madison telling her what most people do when they find out a friend or family member would say to help, that science and treatments are continuously evolving, cancer these days is very survivable, etc. After my ride back to the office and my car, I joined Madison and Colleen, who had just arrived too and off to the doctors again for a polite but direct WTF conversation, which is it…  chondroma or chordoma? My gut tells me it was a brane-fart: the doctor's brain saw the word chordoma but incorrectly translated it in her head to Chondroma, something infinitely less rare that she’d seen before, but it wasn’t chondroma. Damn. This is one of my September 11 reminders... hearing the word chordoma, then Googling it on 9/11/2013. Oh my God, how can this be... how can this be, why her Lord, why not her mom instead. 

Kidding aside, mom's and I have met a lot of cancer parents. Everyone would forfeit everything for it to be us, and not our kid. My next non-9/11 September 11 memory was 2014 in Boston. On that day Madison received her last radiation treatment wrapping up eight weeks of IMRT and proton treatments, and that after enduring two more gnarly surgeries and five rounds of chemo. I took this subway pic from my train-station in Boston… Finally, light at the end of the tunnel, Madison ringing the bell at MGH in Boston. Only three more chemo treatments and we’re done. (oh yea, we who dad : - )  

September 2015 sucked too. Madison’s neck had a bone graft which had fused remarkably well. The good news, there was far less risk of hardware breaking but the bad news, a plate was visible when she opened her mouth wide. Damn. I was confident I could get the top screw securing the plate out, but none of the others. Another hellacious surgery required, damn. By request, the surgeon in 2015 kept the plate for me. I have it on my key ring, along with a small cross from Madison’s. 

Disease free for two years, then an ugly metastasis. Damn. We already had a plan-B given guidance from the Chordoma Foundation and MGH, so all of the trips to San Francisco and while magic for six months, suddenly stopped working. We went to plan-C, but that proved ineffective. After three inclusive what-next discussions with experts, I met with an oncologist who reviewed her case from beginning to current, including the DNA sequencing of her tumor. He said something I think we knew but didn’t say, he asked “has anyone had the discussion with you that this advanced disease will likely run its course?” Madison’s question, “what percent chance do you feel chemo might help, and would it be curative or just life-extending?” He said maybe a 5% chance chemo might work giving the DNA make-up... it might slow the progression but wouldn't be curative. Damn.  Acceptance is not concurrence. This is not OK, it just is. I’ll never forget that moment, forever burned in my mind. Madison said “dad, I don’t want to die from chemo as a chemo patient… let’s go home. That was September 11, 2017. Two weeks later, a grand celebration of her life, link here, and living and loving large as long as possible. She did.  

Madison, mom's and I have seen the reflections of emotions in eyes of everyone who loves us and loves Madison, a love that won't ever have an epilogue or ending.

We all have our days, but my memories are mostly of my immense pride, how much she taught me, and not fear mortal death. I think she taught others by example with unspoken words beyond 'I love you', Madison just staying Madison. That last oncologist didn't imply that cancer may 'win', but 'will likely run it's course'. I'd written before that Madison made me promise that I'll never say that cancer took her, that she lost her battle, etc. That would imply giving up or that she's the loser, or perhaps didn't 'fight' hard enough. Incorrect. On September 11, 2017 Madison was basically handed a death sentence in that moment. Madison saying "c'mon dad, let's go home" to me in that moment was her deciding instead it's a life sentence, and she lived it blowing through physical barriers and challenges despite the chaos going on alone her spine, ribs, and lung.

I have a love/hate relationship with September elevens. Justifiably it's a day we'll never forget, but 9/11 being an annual media event obviously reminds me via TV and news of that day and our 9/11's.