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! Fun Stuff: 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, Greg Clinical Trial Link: https://clinicaltrials.gov/ct2/show/NCT02259582?term=Demcizumab+lung&rank=1 OncaMed Link: company running the trial: http://www.oncomed.com/index.html
22 Comments
Kathleen Redd
10/31/2015 09:01:54 am
Greg and Jan...I can picture you making friends with your guy at UCSF and it brings a smile to my face:) We love you and we are blessed by your example and by the service you have given to all of us.
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Janna Madsen Hargadon
10/31/2015 10:25:49 am
I really appreciate your thoughts Greg. You paint pictures with your words and take me to the hospital waiting room with you. I can totally hear Jan and watch her authentically connect with Jonathan. You’ll all be having him over for strawberry pie sooner than later I’ll bet.
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Cheryl
10/31/2015 06:29:56 pm
Thanks for the inspiring words and attitude, Greg, you're amazing and I appreciate your vulnerability in sharing your journey (likewise, Janna, in your reply). I'm in for the Madvember Challenge. You're all in my thoughts, prayers and fasting. Happy Halloween! Love ya, Maddog, Cheryl (Nichols)
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Carla Hill
11/1/2015 07:58:39 am
Bishop, I'm intrigued by your thoughts in this experience. I think you are brave and generous to share. Thank you. Now, BRING ON THE BODY HAIR!
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amy barton
11/1/2015 10:49:20 pm
Subplot #1 is one I keep coming back to so often since I have read it. You guys did a Jerry Rice on someone with some major defenses thrown up. Way to go deep, fast. I am inspired by the way you are sharing all the good, bad and beautiful of this journey. I would take a road trip with the Madsen fam ANY day. And this one--it's an honor to jump in on. Sending our love, good vibes, fasting and prayers your way many times a day. As for Madvember, body hair AND 30 minutes a day to hone the inner groove--gladly! Although, in honesty, I think shaving my head might end up being easier than letting the underarm hair go all month long. I'll give it a shot though. And promise NOT to post pics of that. :) Love your insights! And you write just as if you are sitting in your living room, talking with a group of friends. It's so authentically YOU. What a talent. I am loving it. Best to you tomorrow especially on your first day of chemo. We all love you.
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Jennifer Lee
11/2/2015 12:43:32 am
Thrilled about you getting into the trial! Your insights are truly inspiring, thank you for sharing your thoughts, the lessons you are learning on this journey, and your incredible faith with all of us. The primary theme for November is "When you serve others, you serve God". I have been contemplating this most basic of gospel principles all day today and as I taught the children during sharing time about the Good Samaritan and challenged them to perform acts of service for their family this week, I thought a lot about how the principle of service has played a role in my life and how profoundly exercising this principle has affected my testimony. Not just in giving service but in those moments when I have had to humble myself to accept service. As I read your reflections on being the one who must accept being served by others now, I thought, you and Jan have always seemed to be the epitome of this gospel principle and now all of the people whom you have served (Jonny and me included) and whose lives you have blessed have the HONOR of serving you and your family. We wish it were under different circumstances but we are here if you need us, even if it's just daily prayers and positive thoughts being sent your way. We will definitely be thinking about you and praying for you on Tuesday!
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Floyd
11/2/2015 12:41:38 pm
Mad props to both of you for getting the salty veteran dude to lighten up. How could he not like you guys? Great to hear things will be getting underway sooner. Positive vibes and prayers continuing to come your way. Floyd
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Dave Ellison
11/2/2015 06:02:38 pm
Greg - sending thoughts, prayers and faith to you from Massachusetts as you start treatment tomorrow in San Francisco. Your courage and unflaggingly positive attitude will make all the difference.
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Lori Nichols
11/2/2015 09:18:53 pm
Greg, you make me laugh. Janna makes me cry . . .
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Kendall Blake
11/3/2015 07:44:54 am
Elder Faust gave a talk at BYU several years ago, and he said something that I though you'd appreciate! He said:
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Rich Bray
11/3/2015 08:53:48 pm
I knew the 18 year-old version of Greg Madsen quite well. Great guy, but he's got nothing on the current version.
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Martin family
11/4/2015 10:54:53 am
Greg,
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Bob Canady
11/5/2015 06:01:42 am
Hey Greg! Thanks for sharing your journey! You are amazing! Great news on getting into the trial! Your comments are so real and it's great to get a glimpse of your experience. Prayers your way...love you!
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Garrett Powell
11/6/2015 03:23:28 am
As always, after reading both yours and Jan's amazing insights and examples of love for and service to others, I am reminded (as was the protagonist of your SubPlot #1), who the real doctors will be during your journey at UCSF. Love you guys!
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Marina
11/7/2015 12:40:22 pm
Hi Greg,
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Haydi
11/8/2015 09:13:13 pm
Thank you for keeping all of your loved ones up to date on your journey, Greg. You have given the universe so much love and grace. You continue to do just that. God bless you and yours.
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Pam and Stewart Greeninger
11/9/2015 04:06:00 pm
Enjoyed reading your last update and was so happy to learn you were accepted into the trial and were able to start earlier than expected. Life certainly is full of unexpected challenges... Go get 'em Greg! If anyone can beat this cancer, certainly you can do it! You and your family are in our daily prayers. Looking forward to your next update.
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Drew
11/10/2015 05:05:56 pm
Greggers.... Lu and I read your latest post... and we both laughed, because I also think I'm one of the young Architects of the City, young surfers out at Old Man's, the cool ripper on the Mountain bike trail... Unfortunately, I'm sure the people around me think...'so great,... that old guy is still getting out there... trying'.... I'm inspired by your thoughts of how to make a difficult relationship you might have, to make it fun, ask a thousand questions, (I can SO see Jan just working it.!!!)... and to shower the person with interest and attention... Such fantastic insight.!! I gonna try it with my impossible client.! I'll let you know how it's going.... I'll need to draw on my inner Jan..!!!!! Love you Brother.... DB
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Christy Amos
11/11/2015 01:31:15 pm
I love you Greg. I love your written voice. Thanks for sharing your journey with us. I have been praying for you & your family every day since October 2nd when I found out about your cancer. I had gotten a bit lazy in my prayers so in a way you are serving me & others. We are reaching out to connect more fully with God and it is benefitting us as well. The things I pray for . . .I pray that you will have great courage, faith and clarity of mind, that your doctors will be inspired, that your body will respond to the treatments, and that Heavenly Father will grant you your heart's desire. Life is good. I don't know why you have to go through this, but I know God lives and he loves you and you are not alone. I believe in miracles big and small. Look and you will see them every day. Our God is a God of Miracles! 2 Nephi: 23
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Kim Clary
11/11/2015 02:14:54 pm
Greg, your insight into humanity and genuine love for others is beautiful. Your social capital bank account is full because you have been making so many deposits into the lives of those you love. I love hearing that you are learning to withdraw from the hefty bank account of yours. Let our love pour into you and your family Greg - God knows that is exactly what you have been doing for all of us.
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So it seems to me that, all along, you have been a philosopher disguised as a layman. I mean this in the best of ways! I love the honesty couched in your reflection on both your own personal journey as well as a more abstract, universal deconstruction of the human condition. Not to mention, and I've always thought this, but your dry wit comes through in a lovely way here, in many places.
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Jen Berkley Jackson
11/13/2015 02:14:00 pm
"Give and ye shall receive..." (200+ hospital visits...that is amazing!!)
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