Full Circle

My last three jobs primarily focused on large-scale change initiatives… helping people and organizations to understand, absorb and accept a constant stream of changes, both big and small.  We used to talk a lot about “getting comfortable with being uncomfortable.”  We focused on listening.  We emphasized and reemphasized what was important.

Well… I’d say we’re personally embarking on Week 8 of the Discomfort Olympics.

After a full week of traversing the entire state of California for second and third opinions, we’re now all back in our own beds.

The week started with James and his brother, Uncle B, going to San Francisco to meet with several highly recommended doctors.  On their way to the city, they tell me they drove directly through a rainbow.  Through it!  Leprechauns and gold coins scattering in their wake.

After a full day of consultations they left in a bit of shock… the surgeon recommended removing one of James’ vocal chords entirely and reconstructing it.  The doctors exuded confidence.  They expected his voice would be virtually unchanged.

Barely 24 hours later, the whole fam piled into the car and set-off to Los Angeles.  The drive was breathtaking.  After dropping the boys with a very brave Jamie A and Baby Oliver, James and I headed to UCLA to meet with another highly recommended specialist.

Now I must say that even though we know every doctor we meet is a bit like a hammer: radiation doctors insist on radiation, surgeons specify surgery, oncologists advocate systemic therapies… you go in knowing what they’ll say and yet it seems to take the wind out of you every, single, time.

The doctor at UCLA was very good.  He took a long time to sketch and explain his approach, the information he was considering, and gave us an informal lesson on the recent history of melanoma biologics and immunotherapies.  In the end, he put significant weight on the pathology and therefore strongly recommended enrolling in a clinical trial involving a study comparing the efficacy of a current immunotherapy and a newer, less toxic immunotherapy.

We left with a sense of significant time pressures and a week culminating in three very different recommendations.

Fortunately, Auntie Angela’s brother’s best friend is also a doctor at UCLA who specializes in radiation and immunotherapies.  He met us in the hospital cafeteria.  He talked us down from the ledge.  He was so helpful and down-to-earth and answered many of our unanswered questions.  Although we left Westwood with new anxieties, we were so so glad to have this reentry conversation… before retiring to a sleepless night at the Sheraton Universal.  As we made our way out of the parking garage, I tried to focus on how lucky we are that there are so many therapies targeting this disease.  That the investment and research in this space is something to be deeply grateful for.  I know that many, many people meet with doctors who have no history to sketch.  No options.  No hammer.  But it doesn’t make it any less gut-wrenching.

By the next morning we had a huge list of questions, recommended actions and an urgent need to regroup with our Stanford team before James begins his radiation treatment on Monday.

All in all, after countless emails, phone calls, and sleepless nights, we’ve decided to continue on our current path.

It was still key to explore the opinions of additional experts and understand the spectrum of recommendations, despite the emotional and physical up’s and down’s.  In the end, our doctors at Stanford have the most complete information of our current situation.  The surgeon provides critical input into what he actually saw and the confidence he has in the margins.  The pathologist weighs his confidence and provides further context.

Although we plan to get a second opinion on the pathology, the evidence still points to radiation being the best next step.  The other options are still hammers in our box of hammers, and we’ll cross that bridge if and when we get to it.

James leaves for Santa Cruz on Monday morning to begin his weekday treatments in Los Gatos for the next six weeks.  We are so very lucky to have the love and support of the entire #TeamJames.  Our most sincere thanks to every single one of you for checking-in on us, reading our updates and sending your positive energy our way.

We’re getting much more comfortable with being uncomfortable… guess it’s the universe’s way of hammering it home.