Post #4 Greg’s 10.30.15
Great news…I heard from my UCSF Doctor on Oct 29th that I was accepted into the Clinical Trial! (link at end of post)
I begin Chemotherapy plus the trial drug or placebo on November 3, 2015, 43 days after I was diagnosed on September 21, 2015.
Last Friday the 23rd when we visited with UCSF, we were informed that in the small print of the Clinical Trial criteria that is hosted by OncoMed (link at end of post) that tissue samples had to be taken by Core Needle Aspiration vs. a Fine Needle Aspiration and the assumption was that my tissue samples were taken with a fine needle given I had a Bronchoscopy.
The doctor said it was 60% chance that I would make it, so it was not a sure thing. In the end, I made it so all the discussion was interesting, but did not matter. Some of the items that we debated over the week were do we potentially get another sample via surgery or do we put our best application forward and hope for the best.
We decided that another surgery was not a risk worth taking, and so we decided to package my application as nicely as possible and advocate that I was a candidate they would not want to pass on!
Our strategy worked and we are excited about moving forward. In the event that I did not get accepted, we had also contacted Stanford and we were set to begin the Chemotherapy with them on Monday.
My scans did reveal that the tumor had only grown about 1mm over the last 6 weeks so this pleased all of us. I cannot lie, I was hoping the scans would come back with a reading that the tumor was going away on its own, but I think that is down the road for now after we begin treatment and continue with all the positive energy being channeled my direction!
Like any road trip, there are lots of subplots that actually in the end are the things you remember, look back on and laugh, cry about, cherish, and most likely are the ingredients for the learnings/insights that create growth and joy long term as we continue to advance in intelligence and knowledge.
So here we go…SubPlot #1: Connection
The most entertaining thing last Friday was with Johnathan the person chaperoning us around.
His Persona: 54 years old (looks older), has been in his job for 30 years and likes to tell you that fact, crotchety, not the best bedside manners, makes you feel like he is doing you a favor, wears his shirt unbuttoned between the navel and pectoral line, and a uniquely shaped beard that he says is to make himself look different. He is quite competent in his job, he does not appreciate someone pushing to get things done, he has ownership of the process, and has reminded us numerous times that he deals with people all day long that are fighting for their lives-so basically he is trying to tell us in not so subtle ways…. “your situation is unique to you, but to me, I deal with people all day long who think they are the only ones who have stage 4 Cancer”.
So as part of this grand experiment, Jan and I said, “this is going to be a challenge, how do we build connection with this guy? Clearly it will take some time, but let’s see if we can’t make some progress during the day. Fyi-in making the decision about where to do treatment this item did make the checkerboard criteria list, so it was not just a minor item given he is our main chaperone over the life of the trial.
So we built a little strategy (never discussed it, but we have been married since 1989 so we kind of know how to work together): compliment him whenever possible, defer to him and tap into his expertise so that he knows we appreciate his efforts, read his body language and align with him when he says funny stuff to the nurses or is frustrated with them by flashing the same facial expression back that he made when he was frustrated with the nurses. He seemed to like the back and forth.
Some people say our faces have up to 144 muscles that are so well developed and worn based on our patterns that you can actually read peoples faces and make some assumptions (we know what happens when you assume….Ass out of U and Me…just in case you did not know ) that at least help you stay entertained in a hospital even if your assumptions are off base…which typically they are after you get to know people….so be careful!
So after several hours together with Jan and me aligning with him….Just imagine the picture…Jan absolutely worked him over by asking him questions, being attentive, complimenting his bracelets and his clothes, asking him everything about San Francisco, his skinny jeans, and you know how Jan can be…sometimes on the edge of interrogation but she is so good at it you actually are hypnotized in some way and you just start telling her everything …I think he had no idea what hit him...I am guessing he has never met anyone so interested in HIM, the guy was glowing.
Our goal by the end of the day was for him to possibly consider that we might be OK enough people that he would be willing to help us on our journey to beating cancer.
He had originally told us that treatment could not begin until November 16th, and well you can see he has improved our start date by 2 weeks!
By no means have we made it with Johnathan…but this is clearly a subplot that will be worthy of paying attention to. Someone once told me, “you make your own fun,” so we are doing that for sure! I mean if you have to sit in a hospital all day with someone…you might as well figure out what you can learn from them!
Subplot #2: Image vs. Reality
Another interesting part of the journey is within my own head (this might be scary to read) relative to the movie I play about myself and who I think I am and what I am like. Whether it is true or not, I see myself as the guy that walks onto a college campus and if the girls look at me (they don’t but I think they do), I think they wonder which dorm I am living in? When people ask me what color of hair I have, I think brown or blond (grey is the right answer), when I am riding my bike I think I am 18, when I go into a company I still think I am one of the younger ones in the room when I look around, and well you get the picture…my image is not my reality. This problem attacked me the other day in the hospital.
I was lying in the prep and recovery room for people going to Radiology…15 people in beds…it looked like a MASH scene...all these old people with oxygen tanks, IV’s, blankets, nurses around them, small curtains trying to separate the people without much luck, and most of them appeared over weight, well over 60, and the looks on their faces just screamed “I am suffering right now”. I was observing the scene like I was a boy scout getting some service hours for visiting the old folks in the hospital…when all of sudden I thought…OMG…I probably look just like the rest of these people!
I remember thinking at that precise moment, all these people are asking themselves, “why is this young man in here? He looks like he could be my son!” I mean that is the look I interpreted from their faces as they all checked me out like I was the new kid in class.
So as you can see, the reality of what I am in the middle of has not quite settled. I clearly have some reality to hit, but I will never lose the vision…I mean that is what keeps us going…even if I am off…the good book says in Proverbs, “As a man thinketh in his heart, so is he” and it also says, “where there is no vision the people perish” so I will continue to hold the vision even though the movie at the moment does not seem to fit. I love the Steve Jobs quote, “When we are in the middle of something it typically does not make sense, but when we look back on our lives it is easy to connect the dots”. So I am obviously in one of those moments!
SubPlot #3: Service vs. Being Served/Social Capital
Social capital refers to the collective value of all "social networks" [who people know] and the inclinations that arise from these networks to do things for each other ["norms of reciprocity"].
How does social capital work?
The term social capital emphasizes not just warm and cuddly feelings, but a wide variety of quite specific benefits that flow from the trust, reciprocity, information, and cooperation associated with social networks. Social capital creates value for the people who are connected and, at least sometimes, for bystanders as well.
At the Dominican Hospital in Santa Cruz, I have probably been through the front doors well over 200 times in the last 20 years to go visit people who were sick or needed comfort in some way. I know the guards by name, where everything is, I know how to walk the halls, how to sneak in past the visiting hours, I am a local.
When I had to go there for myself it was quite uncomfortable, the guards would ask me who I was going to see and I had a hard time telling them the truth; I made stuff up that was truthful but unclear that it was about me. It just seemed easier than getting into it.
Obviously there are tons of people that are serving me at the moment thru whatever means they are able and from their own traditions whether they be Muslim, Jewish, Christian, Atheist, Buddhist, Hindu, Native American, Naturalist, etc. and it is a foreign thing to be on the other end of such amazing love and care. My “social capital” bank account is in withdraw mode and it feels strange. I am learning that the only way the “social capital” system works is that someone has to be the recipient of the love people inherently have. This is hard, this is foreign, and this is a wonderful thing for me to learn.
I am reminded of the benefit that a fire has on the forest:
“Wildfires, are regenerative for the forest, revitalizing for the watershed, renew the soil, and reset the clock for the ecosystem. Many forests cannot sustain themselves without natural wildfire. These forests require canopy fires to regenerate because the trees in the forest are adapted to only produce seeds following a major fire event. Hence, fires can be regenerative for the forest, and without them many of these forest types would decline on the landscape.”
As I have been thinking about this, I am learning to appreciate that we all need opportunities to serve and that we need to allow others to serve us. As we are served and humbled, the regenerative process is in play and we are able to create new growth that will allow us to be successful tomorrow with a new set of skills vs. hanging on to our past set of skills and beliefs. Change is often times hard, and the forest fire is a forcing function to cause new growth that is stronger and more able to survive for the next period of time.
I have always been taught that service to others is the key to success, “when you are in the service of others, you are only in the service of your god” is a common phrase many of us have heard. If there is no one to serve or people don’t let you serve them, then service is not possible. I have also learned that if your intent to serve is pure and without any expectation you will be more of the benefactor at times than the actual person you are serving.
As I have observed people over the years, I believe it is safe to say that those people that are focused on serving others are the people that seem to be the happiest, have the most joy, have the best perspective on life, live their espoused priorities, and are content and loved by others.
The formula works, give it a try with pure intent to love and help someone and the return over time will give you perspective and strength more than any drug, therapy, or counseling session.
The next phase of the trip is going to be interesting as we begin treatment….so until next time…go out and serve others, allow yourself to be served if appropriate, reflect on your vision of success, and figure out how to connect with someone in a deeper more meaningful way!
Thanks for all your positive vibrations and what you are all teaching me along this journey!
Lots of love,
Clinical Trial Link:
OncaMed Link: company running the trial: