Before the wow, looking back three weeks: I met with a young woman and her mom for dinner. The young woman had recently been diagnosed with sacral (tailbone) chordoma and as anyone who has googled it, they were rocked to their cores. I’d spoken to the young woman on the phone a couple of times prior to meeting her and as you might expect we talked about faith, hope, and the reality. They live in a smaller city where cancer treatment isn't what it is in larger metropolitan areas. Given what she heard a local surgeon tell her, it sounded invasive, but doable. That’s hope, but I sensed a lack of faith in the surgeon. The mantra for guiding chordoma patients is simple: seek treatment by teams who treat it routinely. The reason we met for dinner; she and her mom had traveled in to Los Angeles to consult with chordoma experts in Los Angeles.
As I meet or speak with newly diagnosed patients, I feel I’m a skilled tap-dancer, diverting the subject away from being the chordoma-dad, and the ‘how’s your daughter now’ question. Apples and oranges, my daughter was treated for cervical, you’re not, and we can’t really compare how she is to your case, they’re all completely different depending upon sub-type, location, and other factors. That works 90% of the time and it truly is apples to oranges.
We talked about the word faith. Tto most people it implies spiritual only beliefs, but to our family it’s been ever-evolving. Hope too is an extremely important factor in this equation. While this young woman had a lot of hope that her local surgeon would be successful and the proposed surgery would be less intrusive than she had hoped, she continued researching chordoma and seemed to lose faith in her local surgeon. While self-reportedly very skilled, the surgeon projected confidence but didn’t completely answer her direct questions. Hope is such a simple… well hope, but it’s not an action plan. Faith and prayer are requirements on realistic and spiritual levels, but to me one can’t pray for something that might have required some old-school logic... absolute faith in your your medical team. One may invest in hope that treatment locally will suffice, but absent faith in your team, you shouldn't really be too surprised at the end of the day if it doesn't turn out well. As we wrapped up dinner I let them know that friends and family may try and 'help' by suggesting that God has a plan and that all things happen for a reason... something cancer patients hear a lot. They had heard that already and it didn't seem sit to well with her mom, not because they're non-believers but it's confusing... at times it still is for me. My suggestion to them was to simply thank people, or come up with a brief response so you don't hear it again (and again) from the same person/people.
So the wow: Yesterday I drove the Camry to run some errands. The only reason I drove it was because ‘the Genesis’ key-fob wasn’t working and I had sold ‘the Lexus’. I never changed the radio presets in the Camry, long story... it'd be like erasing what she liked. Anyway I’m driving along and there’s a radio station preset, 99.5 FM, so I pressed that button. I recognized the hosts name and voice from KLOS 20 years ago, Frank Sontag. He now hosts spiritual discussions and when I pressed the 99.5 button in the Camry, Frank was discussing tragedy and cancer, and invited callers to phone-in if you have a single question. I called in with the simple question “do all things happen for a reason?” I briefly explained my question, we spoke on the air for a bit, Frank suggested a couple of online resources and invited me to email him directly. I emailed him and he responded quickly, and invited me to breakfast last Sunday morning. Wow, Madison would have wanted that!
As I meet or speak with newly diagnosed patients, I feel I’m a skilled tap-dancer, diverting the subject away from being the chordoma-dad, and the ‘how’s your daughter now’ question. Apples and oranges, my daughter was treated for cervical, you’re not, and we can’t really compare how she is to your case, they’re all completely different depending upon sub-type, location, and other factors. That works 90% of the time and it truly is apples to oranges.
We talked about the word faith. Tto most people it implies spiritual only beliefs, but to our family it’s been ever-evolving. Hope too is an extremely important factor in this equation. While this young woman had a lot of hope that her local surgeon would be successful and the proposed surgery would be less intrusive than she had hoped, she continued researching chordoma and seemed to lose faith in her local surgeon. While self-reportedly very skilled, the surgeon projected confidence but didn’t completely answer her direct questions. Hope is such a simple… well hope, but it’s not an action plan. Faith and prayer are requirements on realistic and spiritual levels, but to me one can’t pray for something that might have required some old-school logic... absolute faith in your your medical team. One may invest in hope that treatment locally will suffice, but absent faith in your team, you shouldn't really be too surprised at the end of the day if it doesn't turn out well. As we wrapped up dinner I let them know that friends and family may try and 'help' by suggesting that God has a plan and that all things happen for a reason... something cancer patients hear a lot. They had heard that already and it didn't seem sit to well with her mom, not because they're non-believers but it's confusing... at times it still is for me. My suggestion to them was to simply thank people, or come up with a brief response so you don't hear it again (and again) from the same person/people.
So the wow: Yesterday I drove the Camry to run some errands. The only reason I drove it was because ‘the Genesis’ key-fob wasn’t working and I had sold ‘the Lexus’. I never changed the radio presets in the Camry, long story... it'd be like erasing what she liked. Anyway I’m driving along and there’s a radio station preset, 99.5 FM, so I pressed that button. I recognized the hosts name and voice from KLOS 20 years ago, Frank Sontag. He now hosts spiritual discussions and when I pressed the 99.5 button in the Camry, Frank was discussing tragedy and cancer, and invited callers to phone-in if you have a single question. I called in with the simple question “do all things happen for a reason?” I briefly explained my question, we spoke on the air for a bit, Frank suggested a couple of online resources and invited me to email him directly. I emailed him and he responded quickly, and invited me to breakfast last Sunday morning. Wow, Madison would have wanted that!
