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:
10.21.15 Entry #3
(To get email notifications of updates please hit the link on the website and register and thanks for your blog replies….honestly reading your comments is so fun and interesting!)
Non-squamous Non-Small Cell Lung Cancer, Adenocarcinoma, Stage 4 is the type/stage of cancer that I have. Over the last week we have learned that I have thus far tested negative on the various cell mutations that can occur with this type of cancer. This data is important to help us determine the appropriate treatment plan, and this is the information we have been waiting to get.
If you have a mutation (the typical ones are EGFR, ALK, ROS1) they treat you with some wonderful new medicine that is targeted towards just the mutated cells vs. all your cells and thus is less impactful on your overall body.
Based on this information, my course of treatment can be one of at least three paths:
Over the last several days, I have been working hard to discover the various options for my treatment and discovering the clinical trials around the country that I qualify for. I have spoken with doctors/hospitals in Boston, Houston, San Diego, Chicago, Utah, and Bay Area due to much work from many of you! Here is a short summary of what I landed on:
The challenge with this is that the level of uncertainty is quite high with any clinical trial (that’s why it is an experiment) and when you have to make a decision about what is best for your short and long term life expectancy it is nice to have some data that just does not really exist to the level you would want. So the role of intuition, feeling, spiritual confirmation, etc. combined with all the data and expertise you can collect from people in the know becomes an even more important element in the decision making process.
We decided to go with UCSF based on several factors:
The other options:
At Huntsman, they have a very cool clinical trial as well that is based in what is called ImmunoTherapy that is the latest and greatest theory on how to attack cancer. Their trial tests one patient with chemo, and one with Immune therapy #1, and one patient with Immune therapy #1 & #2 at the same time. From all of this they evaluate how the immune therapy impacts your tumor (cancer) vs. how chemo attacks it and then they compare the results. They are testing what is more effective…to start with chemo and then go to Immune therapy or visa versa. The downside of this trial is that you are not guaranteed chemotherapy.
Stanford: Given my make up the only thing they could offer was basic chemotherapy
So the fun part…in my work we often talk about why customers buy a particular product or service. My colleague at InnovatorsDNA, Clayton Christensen, has said that people buy something for functional, social, and emotional reasons and often times are not aware of why they are buying certain things. To the extent you can pinpoint your focused customers key interests you can build your product/service to meet those sometimes less that clear motivators.
I think I could expand this to say that everything we do brings us some kind of payoff or joy or we would not do it...the key is being conscious of why we are doing something so that we can assess if our choice is the best decision for what we are hoping to accomplish….and then being able to ask ourselves…Are making decisions about our time and energy that aligns with our real values and what we want most?
In making our decision about where to do treatment, if I had to prioritize where I wanted it to happen prior to collecting as much data as possible it would have been
The reasons for this are that Huntsman is just an amazing facility and they have an outstanding vision. Dr. Akerley treated me the way I have always tried to treat my customers (always available, generous with his time, understanding, looked at quality of life issues, honest and upfront). My experience with doctors prior to this is that they are hard to get in touch with, they have never given me their private cell phone, and they always seem to have to go to visit another patient…so not business like in my view!...all of my doctors have challenged my paradigm and experience of doctors to date but no one as good as Dr. Akerley at Huntsman.
Going to Huntsman would have meant living in Park City (positive), we have amazing friends there just like I do in Santa Cruz that would take care of me, and I would be close to all my kids assuming we took Henry out of school. So it was a great option for all of these reasons.
Stanford only gave me chemotherapy option, so there was nothing special about that except the doctor was great and it is tough to go wrong with medical treatment at Stanford….and yes the facility and ease of being there is nice…and having a friend on the Board of the hospital doesn’t hurt your patient experience!
The downside of UCSF is 2.5 hours away if traffic cooperates, and as much as I love the city…it is a different game as soon as you go into the city….traffic, horns, lots of people, older buildings, the feeling is less loving more clinical and the creature comforts of Stanford and Huntsman are just not part of the UCSF experience. The trial requires that I go there for 5 months 1 day a week for 3-6 hours, and then every 3rd week indefinitely after that.
If I go back to the concept of decision making and functional, social, and emotional reasons for why we do things….it was clear that the social and emotional reasons led me to Huntsman and Stanford and the functional reasons led me to UCSF. I wanted the functional reasons to point me towards Huntsman or Stanford but it did not happen….my takeaway from this was that I was aware of these factors in the decision making process and it made it easy to make the decision given what was most important to me even though I wished it would go a different direction.
I have at times in my life been so interested in a certain desired outcome in a situation, that I would do things to try and influence that outcome to be realized when in reality maybe it was not the best outcome for me at the time. I’m not saying you should not do everything you can do to help achieve an outcome…you should, but you should make sure your intentions are pure and remain open to what the right path forward might be vs. forcing a path forward.
I highlight this because I know that many people make decisions for the wrong reasons and are often times not aware of the impact of social and emotional factors that are very important but must be considered along side the functional factors. When influenced by the wrong things, in the end we typically pay the price and there are unforeseen consequences that we face that we do not like.
In my case, even though I am not initially as excited about some of the aspects of the UCSF experience, I am conscious of it and now I can turn my thoughts into positive ones and make the experience be rich on all the elements as I put my full self into it and appreciate and take advantage of the opportunity vs. wishing I was somewhere else. I know it will be a unique experience and that when I look back it will make perfect sense!
I am so thankful for you...I believe I have the most outstanding community of friends in the world…and if there was a way to measure this I know the data would back it up!
It has been an exciting and interesting week. I visited Stanford Cancer Center on weds and then flew to Utah and visited the Huntsman Cancer Center and then had a college reunion at BYU with many amazing and wonderful friends!
Several things have happened since my last post...bottom line is I am waiting on additional blood tests to determine if there is a gene mutation to help us determine the proper treatment. If there is a mutation of which there are several that it could be, it would mean a certain path forward in terms of medication that is targeted on the mutation. If there is not a mutation, the path forward will be chemotherapy and then maybe radiation/surgery. I hope to know this by the 19th or 20th of October.
I was very impressed with Stanford and Huntsman and the doctors that I visited. Each institution has different clinical trials they are experimenting with that I could possibly be a candidate for depending on what my tests reveal. This week I will be researching other cancer centers and trying to understand the clinical trials they have in motion or are preparing for to help me determine the best place to do downstream work. Many of you have sent me names of people that have had lung cancer, know doctors, or other institutions that I should further explore…thanks!
My hope is that over the next week or so we will get some answers back and that we will be able to make some decisions so I can get started with a treatment plan. I feel great besides a little cough and some challenges breathing at times, so the doctors are confident that waiting to get the correct diagnosis is the proper path forward.
So those are the facts…the more interesting part of the experience is my own mind and my observations of others and the patience that is required in this period of “creative tension” as we wait.
I have been humbled by the outpouring of love that everyone has expressed to me and my family…it truly has been remarkable. I feel like the luckiest guy in the world to have such an amazing support group of people that love and care about me and my family. Several people have fasted, prayed, chanted, lit candles, meditated, danced, and sent amazingly positive vibes, blog postings, emails and voicemails my direction. I don’t really have a choice but to go crush this thing…the faith of my team is SO Strong! I am even riding in a cross country motorcycle race in the Sahara Desert as an honorary co-pilot this week!
Life has slowed down as it does when you get focused on the basics and what is most important. To relate to the roadtrip experience, it is pretty easy to say NO to things when you are just trying to figure out the path to your next destination. Peer pressure becomes non existent because you don’t care what others think, and will power to resist foods that are not good for you becomes quite easy as you are fighting for your life. Prayers get a little more sincere, high fives are replaced with hugs and everyone is more gentle, loving and forgiving.
One of my friends said that when he got cancer, “I got much more focused on enjoying the journey of life rather than always preparing for the future.” Not that preparing for the future is not important but we must take stock in being present and appreciating what ever the experience is that we are having because in that experience there is learning, fun, and growth. If we get down and mad, we let the adversary win and we do not make progress. I believe that we all signed up for this journey called life, we had a choice and we said, YES….I will go down and experience the joys and trials of earth life because the payoff at the end is totally worth it!
With another friend we discussed that none of us know the journey forward, and we can’t control all things….so getting comfortable with that reality and living your life such that you are prepared for whatever comes your way is really part of the purpose in life.
My situation is unique in that there seems to be no rationale for why I would get lung cancer…no real cause and effect type of logic. My reflection whether it is true or not is that as humans we are much more loving and sympathetic when it appears something happened outside of one’s control.
For myself, it seems in the past when something has happened to someone or myself I have often times looked at why that happened and tried to understand it…I would judge myself or others guessing what my/their contribution must have been. I have learned over the years that people do the best with whatever knowledge they possess and it is really not our place to judge other people, but instead to love them even when we think that the decisions they made might have contributed to whatever the resulting consequence was. As hard as that might be, for me that is something I want to strive to do more often.
I am excited about where my mind is going, the thoughts I am having, and what I will learn on this journey. Several years ago my son Emmett said, “dad, we need to tell each other every day that we love each other, life is too short to not always be expressing your love and appreciation to others.” That kid is on target!
Until my next set of random thoughts, feel free to reply to the blog…it is really fun to read everyone’s reflections and thoughts…I find that very enjoyable and thought provoking! It is through the conversation with others that most of our learning occurs.
Love all y’all!
Hi friends and family! The purpose of this site is to give you updates on my health situation and for us to learn and motivate each other.
I am looking forward to writing and sharing my journey and the insights along the way. I believe this will be helpful for me and hopefully it will be helpful to you as I am sure I will sprinkle some Greg Madsenisms along the way and your thoughts and reflections will be most wonderful for me and others to read and listen and reflect on.
AT the end of the day….we are all on this journey called life, and like any good road trip there are unknowns that make the trip memorable and hilarious and frightening. In the end, those are the things that bond us together with the people we were with, we tell stories about, and those moments teach us a lot about ourselves and how we react in an unexpected situation.
I guess this experience I am having is like a flat tire in the middle of Baja or a car flying off a cliff and landing next to you in your parked Vanagon while in New Zealand or a missed train in Yugoslavia or your bags getting stolen and you have an important meeting, or your travel mate getting altitude sickness in Nepal or any number of other things that have happened to me or you on a little trip.
Today those experiences shape who I am, and have shaped and formed who we all are. One of the defining things and what makes the stories amazing is how we respond in the peak of those moments, the clarity or lack thereof in our thinking, and the experience that follows. These are life's learning moments that just happen and added up they become a part of who we are.
So I guess, I am having one of those great moments in my new discovery of being diagnosed with Lung Cancer at the age of 52. I would humbly say that I am in great shape, am a bit of a health food nut, have an amazing family and professional career, a support system of friends and family that is dreamy….and well I got this disease that impacts so many people.
Why I got it….that is a question I don’t have an answer to and probably will never have an answer to….I think it is genetic. My grandmother had lung cancer and was a non smoker and wonderful person so I am guessing maybe it just got passed on somehow. More on this later after I learn more.
9.21.15 is the day they told me and Jan that my tests showed that I had Lung Cancer Stage 3b-4. I first started having difficulty breathing in the late June 2015 timeframe and I developed a cough. I did not cough up any mucous and my desire to go for a run was not the same as it had been my entire life. I continued to work hard professionally, do Crossfit on a daily basis, surf when it was good, and ride my mtn bike. I knew that something was not right…and assumed it would get better.
Sometime in July I decided that I should go visit a doctor. I knew I had a doctor because to get my insurance several years back I had to have a primary care physician….so I got a referral and had to actually go meet him (I remember thinking that seemed a little crazy). Fast forward to July…I could not remember my doctors name so I did not know how to get a hold of him to get an appointment….but I did remember where his office was….so I drove over to his office and walked in to see if I could get an appointment. The receptionist said, it takes 3 months…I politely said, “I would like to see him today.” I told them I would wait or I could come in anytime and would be happy to see the assistant. I think I had to call several times in the next few days…but I eventually got an appointment with the physician’s assistant 2-3 days later. When I showed up for the appointment, the doctor came to see me.
His diagnosis was that I had some type of allergic reaction to something and that it would most likely go away and he told me to get a chest xray. The xray came back and showed there was fluid in my lungs and some cloudy “stuff”. He put me on some prednisone and an antibiotic and said this should clear it up. Several weeks later, there was not change. I went back to visit and he put me on an inhaler and said let’s give this a try and in a few weeks if not better, we will take another chest xray.
I went to Mexico with my family in August (check out the video my son Emmett made… https://vimeo.com/140454725) and upon my return went back to see the doctor. My belief was that I would have been all better after surfing every day and enjoying amazing clean air. Nothing had changed, in fact I had lost my voice in my last 5 days in Mexico and could not talk…a case of laryngitis…I think mainly from all the coughing I had been doing.
When I went back to the doctor he did another chest xray and noticed that nothing had changed….so he referred me to a Pulmonologist. They performed blood tests, had a respitory therapist assess me, and then I had a bronchoscopy. A bronchoscopy is a test where they put a scope down you throat and into your lungs to look at them and with calipers grab a few samples to go test.
Those samples came back on the 21st of September 2015 and my doctor told us that we were diagnosed with cancer. (More on this moment at a later time)
Fast forward….I have been doing tests (CT Scan, PET Scan, Brain MRI, blood tests) over the last few weeks and I am still waiting to get the results from my tests to see the exact stage of my cancer and to further diagnose the exact problem…prior to figuring out a treatment plan.
This week (10.4.15) I hope to get my results back, visit with a doctor at Stanford, visit with a doctor at The Huntsman Cancer Center in Salt lake City and hopefully make a decision about what treatment plan is going to be the best for me.
If you are reading this, you are clearly one of my dearest friends and I would ask for your prayers and faith on my behalf and your positive energy! I am very positive about my ability to beat this disease and to learn along the way. I hope that my insights can be your insights and that just like a road trip…we can create an experience that will teach me/us many wonderful things to make my/our lives even more rich and full.
Lots of love,