10.21.15 Entry #3
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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!
10/23/2015 07:27:20 am
Thank you Greg. Thank you for taking us on this journey with you. We all have already been uplifted, enriched and made better because of taking this trip with you. I love you, Janna
10/23/2015 07:53:47 am
10/23/2015 09:46:00 am
dustin: yes...please send me the study...i would love to read it!
10/23/2015 09:58:42 am
Greg, grateful for the bright mind and strong spirit you have to discern. As much as I would have loved to have you here in Utah at Huntsman as well, I too feel that UCSF is where you need to be right now. With love, prayers,support,...whatever you and Jan need- I'll be there. Xo
10/23/2015 11:13:38 am
10/23/2015 12:07:34 pm
Positive thought for today: We ran into a friend at Starbucks who knows a woman in her 40's who was diagnosed with what appears to be a very similar lung cancer. She finished the clinical trial at UCSF recently- it has been 18 months and she is starting to exercise again and feels great. She is a cyclist. She has now transferred to a local oncologist for follow up treatment!!! YES!!! Sounds encouraging!
Naomi Chavez Peters
10/23/2015 01:25:33 pm
Kathleen and Hal Hendrickson
10/23/2015 02:22:58 pm
We love you, Greg, Jan and family. Thank you for keeping us updated. xoxo
10/23/2015 05:23:51 pm
Fascinating information Greg! I admire the clarity of thought and positive spirit you carry throughout this decision making process. I would expect no less from you! :) And I will add ACTA NON VERBA to CARPE DIEM on the list of inspirational advice that you've gifted me!! Hugs to you and Jan. We love you guys to pieces!! xoxo
10/23/2015 07:11:48 pm
Thanks for the update bro. Please oh please let Jan know how much we all love her. I can't imagine what she has to go through in all this. Love you both lots.
10/23/2015 09:11:12 pm
Greg - I have spoken with many old high school friends in the past few days. Everyone is pulling for you and is inspired by your battle. You are the man, Greg...whatever you need, just ask and it is done.
10/24/2015 07:13:32 am
Thanks Greg for teaching me again. I am going to make an effort to make choices for the right reasons and "take advantage of the opportunity vs. wishing I was somewhere else." I hope you will turn your blog into a book one day. Make sure you are photographing this incredible journey. I will buy the first copy.
10/24/2015 01:39:40 pm
I am so impressed and honored by your intense experimenting of all treatment options. I wish I would of done more of that when I was diagnosed originally with 3B and finished surgery, 2 rounds of chemo for 6 months each, radition and a scary bout with septic! Now I find out I had a tumor on my hip all along and I now have Stage 4 Matiticed Cancer and lifetime treatment! We must fight together and crush this!! Greg and I love you and yours and we are always in you corner! We are praying and fasting for you! Have faith and find time to play for fighting energy! I just did this in Eastern Carribean! There is handsomeness in masks and baldness and hats! Love you and I love the updates!! Also, my advise is to have a port installed!! Let's get together when I come home from Atlanta in 2 weeks! I know of a great cancer diet- Gershwin Diet! I have the cookbook I can share!! Keep crushing!!🙋🏽💙
10/25/2015 12:09:33 am
I love hearing your thoughts and all the details of this process. Thanks so much for sharing so much!
10/25/2015 01:37:35 pm
Okay, so for the next stage of your amazing career (when you are cancer free), is to be a Cancer Treatment Consultant. You never cease to amaze me, Greg.
10/25/2015 08:42:39 pm
Greg, the Lamson family's prayers and thoughts are with you. Your words/thoughts and experiences are truly inspiring.
10/26/2015 08:28:18 am
Greg, Jeremy and I have been thinking you and the whole fam. You have always been such a positive driving force and such a great friend to all of us (Muirhead, Doan, Dennis clan). We know we can always call the Madsens when we're in need of anything so let us know how we can help. Sending positive thoughts to you all. Love, Megan
10/26/2015 11:36:09 am
Best of luck this week, Greg....we are praying for you, cheering for you and sending lots of positive energy . Know we love you and so admire you. Big hugs to you, Jan, and the kids!! xoxo
10/26/2015 12:20:07 pm
Greg sending UCSF is the best!! Sending positive vibes and love to the whole Madsen Clan. We love you all.
10/26/2015 08:49:58 pm
MadDog.... Great insight. I love that you use your God given talent of discernment and objectivity, to make one of the hardest choices of your life. We all are in awe of your spirit.! I am inspired to be a better person, to strive to be a better Dad, and husband. I still have so much to learn, but reading your latest update, I feel motivated to rise up and be better.... following your example bro... Somethings never change.!! Love you Man..... DB
10/26/2015 09:46:21 pm
Greg, We are so very sorry to hear of your diagnosis. How can this happen to such an amazing human being? It is wonderful to read your words and see that as always, you are facing this too with gusto, wisdom and deep faith. You do so very much for your friends and community, now is your turn to let us all support you and help you conquer this cancer! Koa's bedtime prayer tonight, "God, please help Greg Madsen recover from this cancer and let him get to surf forever and ever." You even have the lil Groms loving you and cheering you on! :) With much love and prayer, the dePuydts
10/27/2015 03:19:17 pm
Greg, I just learned today from Ann Ferrante about your lung cancer diagnosis and was in disbelief. She sent me the information to go to your website where I read your health update and viewed the photos of your beautiful family. Please know that my thoughts and prayers are with you as you deal with so many issues as a result of this diagnosis... You are such a blessing and inspiration to so many people, especially my sons, Nick and Chris. Sincerely, Pam
10/27/2015 05:05:29 pm
Dog man do!
10/28/2015 02:08:26 pm
We are praying daily for the best possible outcome for you. Why is it we need acute circumstances to humble us, make us more grateful for family, and create growth in ways no other experience can provide? you are an amazing individual and you will be infinitely more amazing when you get on the other side of this experience. Thanks for sharing your experience. MacDaddy and Fam
10/28/2015 06:14:46 pm
Thinking about and praying for you every day, Greg. Thank you for sharing so much information and keeping us updated about your journey. You have an amazing spirit and have helped, taught, and encouraged so many people over the years. Keep fighting! Lots of support from South Carolina.
10/28/2015 07:44:14 pm
The Maddog, thanks for sharing your goodness and positivism with us all. You truly have friends and family all over the world. Keeping you in our prayers.
10/28/2015 09:50:39 pm
Jouras family on board and checking in...currently rendered speechless ( Yes, that IS actually possible!).. More to come after we process all of your incredibly articulate and thoughtful/ thought provoking words. Until then please share with your beautiful wife and amazing kids our concern and love for you and for them...arms wide heart open!!! Cindy and Nick
10/29/2015 11:42:06 pm
Silvia and Family
10/30/2015 12:16:36 am
Hi Greg and family,
10/30/2015 06:31:07 am
10/30/2015 09:00:16 am
Greg - Your extended Cisco family is pulling for you. Keep the faith.
Kim Lundahl Schettler
10/30/2015 04:10:54 pm
10/30/2015 08:55:42 pm
Greg... Thanks for sharing your journey with us. You have already touched so many peoples lives and you will continue to do so. You are one remarkable guy! We love you and are praying for you.
11/5/2015 07:22:38 am
I am running all my sprints at 9.0 this month because that's what you challenged me to do all those many years ago. Working out and moving all month in your honor!
Jen Berkley Jackson
11/13/2015 02:05:24 pm
Love how you deconstructed your decision making process and shared wisdom and life lessons along the way...a two fer! So glad that you made the cut and didn't have to back to square one. And, yes, it WILL all make perfect sense to be at UCSF...
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