Some Views from PATIENTLAND™

Another one of my cancer heroes is the late Conradin Dobelli.
Following is what I wrote when I got the news of his death a year a one-half ago ……..from colorectal cancer.

CONRADIN WINS!

I was awakened this morning with the terrible news that Conradin Dobelli has died – taken by the relentless disease that cancer is. 

This news is heartbreaking to me, to us, to the world of cancer care that knew Con.

The embodiment of the emerging concept of the Patient Colleague, Conradin was the perfect patient for the provider community because he became an astute student of his own disease.  His personal self-advocacy lengthened his life; there is no doubt.

Con’s physicians considered that they were partners with him in his treatment in Switzerland, and they supported his progress methodically and enthusiastically.  “Con has designed his own treatment; did you know that?” I was asked by a Swiss physician when I visited Switzerland a couple of years ago. “Yes,” I said proudly, “I know that.”  I knew that because I worked with him and watched him develop his own mutation-specific “neighborhood” in the Colontown BRAF Clinic.  I watched as he posted his instructive slides that represented his own cells at a molecular level.  I watched as he talked about his spirit “dragon”, celebrating in real time his many treatment successes.

Con was very proud to call himself a “cancer hacker”, a term that in some quarters seems to be pejorative, but not to Con and his many followers and fans.  Con felt that he was redesigning a system that would not only help him, but would help others.  He was a cheerleader for helping others by taking people into his own experience so that they, too, could learn how to better advocate for themselves.  His clinical trial path was a true “N=1” (his own trial), and Con advocated constantly for more personalized trials for more people.

A mechanical engineer by trade, he addressed his disease as a good engineer would: methodically, logically, astutely.  It all made sense to him, and, by golly, he was going to conquer his disease with the power of his mind and his determination.  Oh, and to put frosting on his “cake”, he was accompanied on his PATHWAY TO RECOVERY by Miriam, his best friend, wife/partner and leader of his personal support system.

If anyone was ready to confront the system, the disease, his own mortality, it was this perfect combination of Conradin and Miriam.  They – together – confronted this disease until they – together – could do even more.

I met Con online, when he reached out to me to create his own BRAF group.  He had learned about COLONTOWN from his conversations with our late Tom Marsilje.  He was – I knew – in that post-diagnosis phase -that-has-no-name-but-is-real.

This gap of time – up to about five years post diagnosis – is a time when most patients enter their “own” world of “finding your people” – finding others who are going through the same experience.  This time, too, is when we patients can experience the opportunity to look at the meaning and purpose of our own lives, discussing those same existential feelings with other patients like us, in the same “stage” as we are.  THIS is a very important time in our lives – when some of life’s most important decisions are considered, shifted, sometimes altered, and relationships can be bettered or dropped.  This “time” can become the most productive time of our life!

After the shock of the diagnosis, the growing readiness to confront, learning, collaborating, experiencing, living life with disease, hoping, loving, living life, disease progress or not….this time.is an opportunistic window, a time wherein the transformation into either death or into recovery manifests. 

Of course, everyone wants to be the one person who recovers (we live in expectation that we will recover), but not all of us do reach the recovery goal. During this time of disease confrontation, we may uncover the fact that we want to help make the world a better place by our presence in it while we are still in it! 

I am somewhat comforted by my feeling that Conradin experienced that transformation, because I watched him as he so openly tried to help others in so many ways.  He wanted every patient to have the personalized treatment that he had fought so hard to have.

Yes, Conradin tragically died.  Yet Con WINS because his life’s work and his memory (like Tom Marsilje’s) WILL NOT FADE.  People like Con and Tom are stand-outs in any “world”.  But we need to know about them so that we can emulate them in our own lives. My own life is dedicated to ensure this.

Just watch.