I have fallen behind in keeping this up to date.  No excuses…just chose to spend my time doing other things is the bottom line.  I started writing this several weeks ago so it has been a work in progress as they say .  All is well and I will give you the scoop below.  Thanks for reading and let me know your thoughts!

Health Update: 

I received my infusion on March 25th and all went well.  My tumor has decreased in size a total of 18% since the beginning!  The lymph nodes within my lungs have decreased in size and are the biggest contributor to that overall decrease.  This data comes from the CT Scan. The “cloudy” / poorly differentiated part of my tumor is about the same from my previous CT Scan…with possibly a little increase.  My cough has increased a little bit and even though there has been a decrease in my overall tumor my breathing is a bit more constrained than say several weeks ago and I attribute that to the little increase in my “cloud”.

I will have my next infusion on April 18th as well as my next CT Scan and a host of other tests.  Every 6 weeks will be a check point to determine the path forward.  There are three elements that inform the path forward:

• How I feel
• The CT Scan
• The protein marker (CEA) that is a leading indicator of how I am doing

In the last Protein Marker test, my score was 55, this is down from 268 which is where I was at the beginning of my treatment.  This is great news that the number has continued to drop! The doctor uses this information as a data point relative to how things are progressing within my body. Just an FYI…you only have this protein in your system if you have cancer or are a new born baby.  

As we consider the above three factors we will make a decision to stay on course with maintenance Chemotherapy or to pivot to a different treatment.  The doctor told me that the longest he has had someone stay on the maintenance chemo is approximately 1.5 years…so I hope to beat that record! There are definite side effects but nothing that slows me down too much.

Reflections:

I continue to go to the doctor every three weeks and to be part of the clinical trial even.  I am not sure how long this will continue given it takes a considerable amount of time and effort to be a lab rat for research, and I am happy to be helping future patients in a small way.

I had a combination of a few interesting experiences over the last weeks that I will share with you. I was in Utah at TEDxBYU on the night of March 24th. You should go check out the 2016 talks when they get posted in a few weeks. http://www.tedxbyu.com/videos.  

I was on the planning committee and had the opportunity to work with many of the great presenters including Jeff Clark--Mavericks Pioneer, Kate Hansen--Sochi Luger, Randall Bell--How People can “Thrive” when faced with a Challenge, Chris Burkard--Outdoor Photographer, and many other amazing humans from around the world.  For sure…check it out! It will inspire you!

On the morning of the 25th I flew to San Francisco and had my chemotherapy treatment at UCSF. That afternoon my son Henry and I caught a plane to Hawaii to paddle an outrigger canoe from Oahu to Kauai with the Hawaiian Outrigger Voyaging Society led by my good friend Matt Muirhead.  We left at 12:30 am on the 26th and arrived at 2:30pm in Kauai.  It was an amazing experience to paddle a boat with 14 other mates trading off every hour with the next team of 6 paddlers.  We had a chase boat to store our gear and warm up before diving back into the water and climbing into the canoe.

When you get chemo (or at least my chemo) you have to take steroids the day before, the day of, and the day after so your body can counteract the poison that gets put into your body.  When at home on the day of getting chemo, I usually have to take one of the pills they give you as a downer to help you go to sleep because the steroids can cause you to stay awake and count sheep all night…so I figured the timing of this voyage might just be perfect, in that I would not have a problem staying awake during the crossing of the channel!

7 months ago when I was first diagnosed, my good friend Matt came over to the house and said, “Greg, we are paddling on March 25th from Oahu to Kauai and I want you in the boat!” I thought to myself, “well, not sure how I will be feeling, but I will commit!” Matt is a smart man and was applying a wonderful principal called, “Discover the Compelling 'WHY' in whatever you are doing and it will change the game.” 

It was never an option in his mind or my mind that I would not be paddling on this voyage.  I was strong and healthy the entire way, and many of the folks on the trip got sick and had to sit out a few shifts to let their bodies recover. Some guys were throwing up over the side of the outrigger and the chase boat, mostly due to sea sickness and all the turbulence in and out of the boat.

Many years ago when Matt got me into paddling outriggers, he taught me that you must have a BIG WHY burning within. He said, “when you begin journey’s or tasks that can sometimes seem out of reach and will cause you to suffer mentally, physically, and emotionally, if you don’t have a profound 'why' burning within, the suffering will become intense, painful and your mind will play games with you”.  He continued, “If you do have a burning 'why within' the present trial at hand is minor in comparison to your true goal and is viewed as a little hurdle or even an opportunity”.

In the early entries of my blog I spoke about the “Placebo Effect” and how our minds and our thought processes can be a major factor in influencing our health and well being. The boat is an amazing place for this metaphor to play out as it will test your fortitude especially as your body gets beat and tired. 

I was worried how all the drugs in my system would mesh with the Bonine (sea sick medicine) and the goo’s and power bars that I would be eating, but it all worked out great! The fact that I was on my steroids was probably a big bonus for me as they make you your body strong during the time you are taking them! It was not easy, but in a strange was it was easy given I wanted to do this trip for many reasons that were deep within.

My reasons were I wanted to show chemo who the boss is and that cancer cannot keep me from doing the things I want to do as long as I am able. I wanted to paddle with respect for a friend who had passed away from cancer and for whom this trip was in honor of, and for my friend Matt who knew that by giving me a challenge 7 months ahead of time and believing in me that I could rise to the occasion. Once on the trip, new whys revealed themselves and the deepening of the voyaging experience happened while in the midst of the experience and then after during the reflection period.

When you know someone believes in you in this type of way it is amazing what the mind can conceive and what the body can achieve! This is a great lesson for all of us as friends, parents, significant others, co-workers, teachers, etc. People will rise to the level of expectation that you hold in your mind because they will feel your power and they will work hard to become smarter, better, faster, and stronger as they feel your confidence and faith, and you will teach and instruct them with a purity of intent that is felt by the receiver.

This entire notion of the “why” within is something that applies to everything we do and it makes any difficult task on the outside get much easier when you look at it in the context of the larger goal you want to achieve. There has been much said about this topic thru articles, literature, etc. over the years (see links at end of blog for references). It is not anything new, I have heard it for years from friends like Matt and other wise people, but it is something that we as humans often forget when we are in the midst of any trial or battle. 

On the voyage from Oahu to Kauai the trip's main purpose from the Hawaiian perspective was to remember the ancestors of the past, and their goal as a voyaging society has been to connect all the islands in the Hawaiian chain by paddling all the channels as a symbol of how we as people are all connected and to remind all of us to be mindful of those forefathers that have come before us and have paved the way for us to be alive today and to have so many amazing opportunities.  

The Hawaiians take this concept very seriously, this is not a fad, they truly believe in honoring and sustaining their ancestors and this voyage paid homage to them and they believed that we were watched over and protected on the journey.  A Hawaiian Ali’i (Royalty) blessed our trip at the beginning and at the end and the big WHY for all of us was to pay our own respects to our fellow braddah’s and sistah’s, mothers and fathers, grandma’s and grandpa’s, aunties and uncles, friends and relatives who have made it possible for us to breathe each day and to enjoy this amazing world.  

As we paddled under the moonlight with only the sound of 6 paddles hitting the water at the exact same moment, felt the pulse of the boat on each stroke, respected the energy of the ocean and the simplicity of powering your own way to a body of land, there were some special moments of reflection about all of the above and these simple moments of deep appreciation are moments that can carry a human thru anything present and future.  

We all have much to learn from the Hawaiian way of thinking and treating others past and present.  Feel the Aloha and bring it into your world.  The larger Ohana (family) that we are all a part of is truly breathtaking.  Feel it and appreciate and acknowledge the deeper WHY, it will change your perspective.

Kipona Aloha (Deep Love),

Greg


In the spirit of Ted Talks Simon Sinek has an 18 minute talk worth watching about the Why Concept:
https://www.ted.com/talks/simon_sinek_how_great_leaders_inspire_action?language=en

or 

If you don’t have that much time here is a 5-minute version - https://www.youtube.com/watch?v=IPYeCltXpxw

On the 16th of March I received my 2nd infusion of maintenance chemotherapy (Alimpta) at UCSF.   I also had my standard blood tests and check up with the doctor.  Since my infusion I have felt good and have been able to do most things.  Our hope is that I will be on this maintenance chemo for a long period of time so I am choosing to “enjoy” the infusion and the symptoms associated with it.  I am still learning about those symptoms, which for the most part are much nicer than the full chemo!

The basic side effects thus far are fatigue, swollen face, runny nose, and sometimes some weird tastes in my mouth and stomach. To me, this sounds like a normal existence so honestly nothing to worry about. A friend (that is 75 years old) asked me how I was feeling so I shared some of the above with him and he said, “when you are over 70 you feel that way every day!” I got a good chuckle and perspective out of his comments! 

The way my mind works is that I kind of don’t want to know the potential side effects, because I don’t want to be overly sensitive to them and at the same time I want to be somewhat aware. I am finding it is an interesting mind game and exercise to listen to your body and play for the long haul by doing the right things but not over rotating to be too sensitive. 

On March 7-9, I go to UCSF for another maintenance chemo infusion and more tests including a CT Scan to see if my cancer has grown/decreased/stable.  As I have previously mentioned, we hope for stability or decrease. It is an interesting world, because every 6 weeks I get a reading on how I am doing and that determines what happens over the next period of time-if stable--status quo, if growth--then a new set of actions and decisions will be necessary to figure out. I laughed with another friend, “maybe I will set goals that are achievable in a 6 week window!”

Over the last 6 weeks, I have met with several doctors to explore the potential alternatives should my Tumor (how they refer to my cancer) grow.  There are different schools of thought and as I have mentioned new research on a monthly basis to track.  I have determined that keeping track of all the changes would drive me crazy and would be a full time job, but that keeping my relationships with these doctors up is key so that if need be we can within a short period of time make an action plan.  The current plan would be some type of immunotherapy or some kind of treatment associated with my Her2 Mutation.  Location for all of this would be TBD.

Of course I hope that I will not need to explore these treatment options for a long period of time, but I do want to be prepared should it be necessary. The doctors have told me that at some point the tumor will grow back. As much as I don’t want to believe this, I guess they know what they are talking about, so if that time comes, I will be prepared.

One thing I have noticed is that my interest to do some of the things that I have done my entire life are shifting. For example, going out to dinner with people I don’t know and having to hold a conversation for a couple of hours is a draining experience for me. Many of you that are more introverted are probably saying, “no duh, I hate doing that!” Well, I have been one of those people that had no problem with that activity and found pleasure and excitement in it. I am learning to monitor my behaviors and it is challenging because I think a certain way and we know thoughts precede the actions. We shall see what evolves over time! ☺ 

I so appreciate the love and outreach and notes from all of you and just the thoughts alone I know send energy to me! You have made me stronger, made me push forward, and I can’t thank you enough for all your prayers and positive energy! 

The doctors have been surprised by how well I am doing and that I am returning to “normal” activities.  I told them I don’t have a choice, with so many people cheering for me in their own ways, I must rise up and beat this cancer! So it shall be done.  True love and appreciation is the source of all power and gives all of us the ability to get thru lives trials and obstacles. I have much love that needs to be returned and shared with others that I really look forward to the future!

You will recall from previous posts my story about how my daughter's friend Cheryl helped me discover my cancer.  I asked her to write up her experience so that we could all get her perspective.  She did so, and I am excited to share it with you now.

Written by Cheryl Neufville, February 2016

Have you ever gone somewhere on a whim? No logical reason behind your journey, apart from the fact that it felt right and it was going to be an adventure that you would probably never forget? Well I have, and my summer of 2015 is one of those wild decisions that had more purpose in it than I ever could have dreamed up.

Ella Madsen and I had served LDS Missions together in Alabama and literally from day one, we had a connection we both couldn’t describe. Everyone thought we had known each other for a while, and in a way, I want to say we did. We served around each other, and one night, while talking about her life in California, and my life in Boston, we cooked up a plan to spend the summer together. We both would be coming home from our 18 month missions in April 2015, and had no commitments to anything, apart from enjoying being home. We grabbed a nearby calendar, and picked a date for me to come. 

I knew I’d only be home for 6 weeks, but it felt right and I knew my mom would understand. That Monday I sent her an email explaining my summer plans. She gave me her blessing, we bought the ticket, and just like that the summer with the Madsen’s was in full motion.

Months went by. We finished our missions. I reconnected with my small but very energetic family. We celebrated my 22nd birthday, and before we knew it, I was on a plane to California.

While I was there, I developed lasting relationships with many people, one in particular was the father of the home, Greg. This man changed my life in so many ways. He is genuine, kind, smart, calm, and enthusiastic. He is a businessman, devoted surfer, compassionate father, and an amazing listener. He would take me out surfing almost everyday, and though most of the time I was struggling to stay on the board, he was patient with me and never failed to relate surfing to a life lesson. I grew much because of his example. I learned about real and lasting happiness with this family. We would have random dance parties (that even drew the Police to shut us down), take runs down the beach, have morning smoothies, played with Guacamole recipes, and hit up Amundson Crossfit every morning at 6 or 7am. 

Life was literally amazing and it felt as if time was forgiving, and stopped for us. 

A few weeks into my stay, Greg started to develop a cough. We honestly didn’t think anything of it, but as time went on it got progressively worse. He went to the doctor and they suggested getting rid of all smells in the home. We had a family meeting, and the suggestion was implemented to get all the “smellables out of the house.” 

Now, just a little background on me, my family is from Liberia and ever since I was young, we would make homemade body butters and mix oils to put on our skin and in our hair. As an African American, my skin and hair can get extremely dry, and the butters and oils helped to keep them soft. Of course I wouldn’t argue with getting rid of my products, but I can’t deny the fact that I felt like I was giving up a part of who I was. 

I was already out of my element, and had very little to identify myself with. Greg was worth the sacrifice, and I was grateful that I had the opportunity to re-establish who I was in such a new environment. As time went on, I was becoming aware that my products were what was causing his cough in the first place. His wife Jan used essential oils as well, so that wasn’t a rare element in the home, but my butters were. Even though we went scent free, the cough lingered. The doctor suggested to Greg that once I left, things would get better. This is something he did not share with me until after I left the house. In my mind I was worried about my scents, and knowing you are causing someone else to be sick isn’t exactly the best feeling in the world. It got to the point where I had convinced myself that he was literally allergic to the natural oils in my skin (aka… me). 

I was embarrassed and tried my best to be out of the home as much as possible. After work as a camp counselor, I would take the long route home. I love being outside and sitting in the sun, so eating outside wasn’t a problem. I didn’t want to make matters worse so I started separating myself. It was hard to communicate my reasoning behind my actions.  I started to question my purpose for even being there in the first place. People would ask me why I wasn’t home with my own family, and I honestly didn’t have an answer for them. I didn’t know why I was spending 2 months with a family that had such a different style of living than me. 

They surfed and loved heights, jumped off zip lines, and liked hiking up mountains, and sleeping in a sleeping bags along the river bank.  I grew up playing basketball at the south-side courts with my brother and double-dutched in the street with my friends until the street lights came on. The sound of sirens did not faze me and I had never learned to swim or to “camp out.” 

We were polar opposites, but one thing I knew for sure was that it felt right at the time to be there with them. I was out of my comfort zone A LOT. At times it was amazing, and other times, I just wanted to leave, but I gained so much knowledge through the many situations I was in. I went white water rafting for the first time in my life, and totally fell out of the raft on the first bump (that was not fun…but very funny). I did not want to tell them that I did not know how to swim. Just imagine the inner dialogue I had going on in my mind!

I rode a roller coaster for the second time in my life and didn’t pass out (but my voice hurt for like 2 weeks). I stood up on a surf board for the first time and finally understood why people would wake up at the crack of dawn to paddle out in the OPEN ocean and sit for long periods of time anxiously waiting for the next set to come in. By the time August rolled around, I had felt like a completely different human. I could imagine living by the ocean and making smoothies and raising little groms and going out to the ocean to watch sunsets. I loved the lifestyle and the people in Santa Cruz were amazing. 

Though I didn’t share much of my culture with them, I was happy to embrace a new way of living. When It came time to leave, I felt my heart breaking. I had learned so much from them, but I knew things would get better for Greg once I left. We all loved each other, and at the time, I thought my purpose for being there was to learn how to be truly happy. After long hugs and tears, I was on a plane to Utah, where I currently attend school at the University of Utah. 

Ella came by my house about 5 weeks later to catch up and bring me a few things that I had left in California. Something was different about her and after a while of small talk, she told me that she just received news that Greg had been diagnosed with stage 4 lung cancer. I couldn’t control my tears and we both just held each other and cried. Flashbacks of our time on the water, white water rafting, smoothie making, and watching sunsets came flooding in my mind. How could God let this happen?! Ella of course found the positive and potential blessings of this trial, but I couldn’t understand it. I called Greg a few days later and he started off the conversation with humor and whit. He was heading to yoga when I called him (I know, he’s a rockstar). He was so optimistic about the whole thing. He had already chosen to endure the trial well. I knew at that moment that I needed to meet him. He had taught me, just in that short conversation, that you literally have a choice in whether you want to be happy or miserable. 

Just a few weeks ago, I found out a little more about how they discovered the cancer. Apparently, when he went into the doctor to get his cough checked out in June, they did some tests. Those results revealed the cancer in his lungs. He wouldn’t have gone to the doctor in the first place if I didn’t stay with them that summer and introduce them to my body butters and oils. The shea butters triggered physical symptoms of the cancer that had been growing for a number of months. I couldn’t contain my tears when I found this out. A wave of relief had filed my body and finally help me realize my purpose for being with them that summer. How ironic!! 

Here I was thinking that I was unintentionally hurting someone I cared about with my habits, and it was the very thing that saved his life. I was astonished. The power and condescension of God was beyond my understanding. He knew why I was supposed to be with this family and it was more than just making bonds and adapting in a new element. Because Ella and I listened to the promptings of the spirit, we were able to learn so much together and the shea butters played a big role is helping her dad become aware of his health situation. Greg believes that if the home environment would have remained status quo that he probably would have just pushed forward, he needed something dramatically different to trigger his cancer and to make him go to the doctor. 

What’s the moral to the story, you may ask? I think there are many that I learned along a huge spectrum. One thing for sure, it is our job as fellow humans to listen to the spirit and go where God needs us to be at any given time, even if it makes no sense to us at the time. Pray for the spirit of comfort in new environments and be a learner, not a prisoner. Even though it may be painful in many ways to be in unfamiliar territory, being a rookie is the best way to new paths of growth! You will see your purpose for being in certain places eventually. God’s plan and timing is perfect and we’re just along for the ride my friends. Enjoy it, because just like surfing, you never ride the same wave twice. I now have a second family and a father that I love dearly who I learned so many things from that will serve me for the rest of my life. As painful as it was to get tons of mosquito bites, get tumbled by lots of waves, be fearful of drowning, wear a climbing harness and trust a rope, get rid of my shea butters, and endure my internal torment, I will never forget that summer or God’s love for me and those I grew to love! I would not trade it for anything, and how grateful I am that I could play a part in helping Greg discover his Cancer!

I received the results back on my CT Scan and I am continuing to make progress!! My tumor decreased in size from my previous scan, and my blood clot is gone and most importantly I am feeling good.

I will continue to take medication for the blood clot and we will assess how I do on the maintenance dose of chemo over the next period of time.

We will assess the cancer via CT Scan on a regular basis to see if it stays stable or decreases/increases in size.

If it increases, we will determine a new course of treatment, otherwise we will maintain it with the maintenance chemo. Stability is what we are hoping for at this point.

I will be researching the options for future treatments over the next period of time to make sure I am prepared to make some decisions should it be necessary. I will also be focussing on getting my body and mind back into “fighting shape” as they say!

My treatments will be every three weeks at UCSF and it was officially confirmed that I do not have to visit the doctor at UCSF every week going forward.

Quick Reflection:

If you read post #10, you read the story about Cheryl and the amazing role she has played in my life last summer.  I learned more about her experience and I have asked her to write it up so that we can all learn from her unique perspective--which in my opinion is moving, sad, and inspiring all at the same time.  This is real life….better than any sitcom!

I had a chance to see Cheryl and several of my kids' friends the other night who have been diligent in praying for me, sending me positive energy, wearing bracelets, and being amazing friends to my kids during this period of time.  I did not expect it to hit me in such a dramatic fashion but it was emotionally overwhelming to finally see people who from a far have had me in their hearts and minds and who genuinely have desired for me to return to good health.  I know this would be true of any of you who are reading this, and it is just an amazing feeling to know and feel the love.

I pondered today that I am so lucky to actually be able to see these people and to be overwhelmed with their compassion.  I could not help but think that there are probably so many people cheering for us that we never get to meet, but if we could, we would have a similar feeling to what I had the other night.

Enough random thoughts for one night…have a great day, get outside, exercise, eat right, be kind, work hard, turn the other cheek, do a good turn for someone you don’t know, be forgiving, be thankful for your family and friends, and tell the people around you that you love them!

Cheers,

Greg

This being human is a guest house. Every morning a new arrival. – Rumi

In the poem, The Guest House, Rumi uses the metaphor of a house guest to create an image that each day we have the opportunity to welcome something new into our lives, even if it is unexpected. And just like the house guests who can cause us to feel uncomfortable with their visit, unwelcome feelings that stop by our house, our life, can be just as exasperating.
​
We wait impatiently for these house guests to leave so we can put our house back just like it was before they arrived. However, underneath the irritation can live incredible value when we take the time to receive these guests with humility and courage. This is how I feel about my situation…I know this is part of a larger plan and that what I and hopefully others can learn from this experience will make the future more exciting and rich if we take the time to embrace it and welcome the insights into our lives.

Rumi’s poem is a good reminder to embrace change, face our fears and use our bodies as a guest house to welcome whatever, and whoever, drops-in on us from time-to-time:

The Guest House

This being human is a guest house.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they’re a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.

Be grateful for whoever comes,
because each has been sent
as a guide from beyond.

– Jelaluddin Rumi

Fear keeps us trapped. We shut doors and windows and refuse to let anything, or anyone, new inside. We hide in the familiar. We keep growth and personal change outside because our fear tells us that opening the door and inviting a new guest into our home is just too dangerous. 

I had a very interesting conversation with my friend Jeff Clark two Monday’s ago in Half Moon Bay. Jeff is the first guy to surf Mavericks and is a legend in terms of big wave surfing. The waves were pumping, so on my way home from UCSF I stopped and watched the 40-50 foot face waves and the surfers riding those giants.  He wanted me to go out in his boat to watch, but I am not supposed to go in the ocean yet. The odds of getting really wet and potentially in a bad situation were not worth the risk. 

We met up a couple hours later and had a great discussion about fear and moving from the known to the unknown.  He said that for him he thrives at the moment he moves from what he knows he can do to the moment when he is uncertain about his ability.  “If at that moment you revert to fear you will most likely not be successful, but if you go forward with faith using the skills you have…you can enter into a new zone of growth and skill, and then the unknown becomes known and you have reached a new level.” This process of growth creates confidence and makes the next situation in your life that much easier as you go from uncertainty to certainty…until you try and give it 100% you will never know what is possible.  

The extraordinary effort is where our lives can explode, if we are open and grateful to whatever is standing in the doorstep and waiting to receive the invitation to come inside.

Sometimes what we fear most is not that our lives will turn out poorly, but we will actually find peace and happiness. So, we do nothing. We don’t allow happiness to walk inside because what would we have to complain about next? Somewhere behind our walls we have learned there is a false comfort with the predictable. 

Look for the strength in your house and the weaknesses too. Take the chance to answer the doorbell and allow every experience inside. Treat each experience humbly.

Wait on your guest, serve your guest and don’t rush your guest to leave. When the visit is over you may find your house is in better shape than it was before your guest came to visit.

After all, Life, our guest, won’t be staying long.

Health Update:

Lots of things to give updates on today after my visit with the doctor:

• I saw the CT Scan and my tumor has decreased in size!!  This is really great news after my first 6 weeks of treatment. 
• The fluid that was in my lungs has decreased and my breathing has gotten better. 
• The protein marker I referred to (Carcinoembryonic Antigen-CEA) moved to 118. My serum level was 286 on 11/2/15 and it was 165.7 on 11/23/15.  
• For the first time in 6 months I was able to sleep or rotate onto my side or stomach for more than a few minutes.  This is due to the decrease of fluid in my lungs which made it so that I have had to lay flat on my back when sleeping.
• My cough is less consistent and my voice is kind of getting better
• I went to an ENT doctor this week at Stanford to get checked out and I do not have any issues that are cancer related which was a question we have wondered about.
• I developed a Pulmonary Embolism (PE) over the last 6 weeks in my left lung. A PE is a blood clot and to get rid of the blood clot I have to give myself two shots a day for 6 weeks to reduce the clot.  I will get another CT Scan in 5 weeks and we will assess the PE.  The most likely scenario is that I will need to take some form of a blood thinner for an extended period of time.  One theory on how I got the blood clot is from the trial drug that I hope I am on.  You can develop a PE from my chemotherapy drugs, but the odds increase with the trial drug.
• Since I developed a PE while on the clinical trial, I am no longer able to be on the trial based on the rules of the clinical trial.  They are concerned with someone getting a PE and hence they do not want you to continue on the trial.  If I was on the trial drug, I received 3/4 of the infusions so the doctor feels like I got most of the benefit of the drug.
• Given I am not officially on the trial, it may change my frequency of having to visit UCSF on a weekly basis down the road.  This will be determined depending on how things unfold over the next 5-6 weeks. Basically, I will welcome whatever arrives at the door and plan accordingly!
• Breakthrough News: My doctor at Stanford retained some of my tissue samples and he found a mutation called HER2. HER2 is typically associated with breast cancer and is found in about 2% of cases that are similar to mine.  There currently are no drugs available for HER2 relative to lung cancer.  You will recall that in the beginning we were searching for a mutation and never found one…so this is really great news! 
  • What this means is that I have a good back up plan should my tumor start to grow or we feel we should try something new.  If my tumor continues to shrink or stays steady state, we will most likely stay with the maintenance dosage of Chemotherapy (Alimpta) that I will start taking in January. 
  • I am in the process of learning about HER2 and the drugs associated with treating lung cancer.  More in the future entries.

This last week since my infusion, I have at times been nauseated and a little bit dizzy and have experienced a little bit of chemo mouth (everything taste like metal) as well as being tired. My immune system is low and I will try and get thru this next week without picking up any illnesses. 

It is interesting how each week there has been a different reaction and symptoms.  Once again the lesson of expectations and surprises continues to teach me that we must be open to whatever appears at our door and to expect the best and be prepared to welcome whatever arrives with a smile and conviction to appreciate the journey whatever it may be.

My next chemotherapy will be January 4, 2016.

I failed to mention that yesterday when Emmett took me to UCSF he passed out while I was giving blood.  The poor guy was just watching the nurse poke me and pull out 7 vials of blood and low and behold we turn around and just saw him fall like a tree to the tile floor.  His head hit the floor with such a beautiful thud and he was as white as a ghost.  The nurses left me and immediately focused on Emmett for the next 5-10 minutes.  He was out for a few minutes and can’t remember much of the situation. One of the nurses was hysterical and it actually was funny watching them try and bring Emmett back to reality. We immediately went and ate breakfast and Emmett started to come back to his normal self. It was nice to be a caretaker for a few moments!

I hope you all have a wonderful holiday season with family and friends! 

I love all y’all!

Greg

Health Update:

Good News…I have been feeling pretty good since my Infusion on the 23rd of November, compared to the first round of chemo.  The doctor warned me that the “cumulative effect” with chemotherapy would make me more tired and the side effects would be more pronounced, those things so far have not been true, so I am stoked!

In speaking with the doctor on the 30th of November he said that my body is reacting well to the drugs and that one of my tumor markers (Carcinoembryonic Antigen-CEA) moved in a positive direction and he was excited about that.  For those who speak this language, my serum level was 286 on 11/2/15 and it was 165.7 on 11/23/15.  Bottom line:  this is good news and could be contributing to me feeling better.  For a person without cancer the score would be 0, so moving in this southward direction is very good.

The first real marker about how I’m doing will be on December 14th when I go for my next CT Scan and my next infusion. It will probably take a day or two to get the results. Hopefully I won’t wet my pants during this infusion! 

It is a funny feeling going thru this because I don’t want to jinx myself by telling you that I have been feeling good since my last infusion.  The program (food, sleep, medicines, exercise, etc.) I have been on is working for me.  It is a tenuous situation where I just have to listen to my body and do what seems appropriate to keep feeling good.  I don’t want to get behind and have to play catch up, so I try and really listen to my body and respond accordingly. It’s kind of like being in a boat on the ocean - if you get too comfy and start trying to untie your fishing line…boom!  The next thing you know your stomach gets a little upset and you have to look at the horizon to feel better.

I’ve been eating a super-healthy diet that is mainly plant based with the ability to splurge on occasion!  We started juicing all kinds of vegetables and fruits and it is quite tasty! I have maintained body weight, I try to walk every day and ride my bike whenever possible. Hopefully after these first 4 rounds of chemo the doctor will allow me to do more activities! 

I appreciate all the power, energy, and prayers on my behalf and know they’re making a difference!

Two Reflections:

#1-Placebo Effect:

I have been reading “You are the Placebo” and I like the book- basically it’s about the power of the mind and the impact on your body if the mind believes something.  In one study at the University of Toledo, researchers divided a group of healthy volunteers into two categories---optimists and pessimists---according to how the volunteers answered questions on a diagnostic questionnaire.

In the first study, they gave the subjects a placebo but told them it was a drug that would make them feel bad. Their study results indicated the pessimists had a stronger negative reaction to the pill than the optimists.  In the second study, the researchers gave the subjects a placebo as well, but told them it would help them sleep better.  The optimists reported much better sleep than the pessimists.

The takeaway for me is that in exactly the same environment, those with a positive mind-set tended to create more positive situations, while those with a negative mind-set tended to create negative situations.

Given my experience over the last few weeks I imagine you can see why this is interesting to me.  I actually expected to be worse and then it never happened physically.  I’m not quite sure why, but I am an optimist for sure! 

One of my colleagues said a funny thing once, “For Greg, hope is a strategy.  It seems to always work out.”  What he didn’t realize (and I didn’t tell him) was the scope of contingency-planning I have in my back pocket given the knowledge that things often don’t play out the way you hope or expect, so what you must be ready to do is respond quickly and decisively with lots of HOPE…so I guess Hope is a strategy!”

In exploring the question of how many medical healings are due to the placebo effect, modern day research shows it can range anywhere from 10-100%.  Researchers, when pushed to be more specific, say they believe on average that 35% of healings are due to the placebo effect.

I also find myself wondering what percentage of illnesses are due to the effects of negative thoughts and whether the percentage is likely higher than we realize. This makes sense to me since it seems so many mental, physical, and emotional health conditions seem to come from nowhere and are hard to explain.  It’s simplistic to suggest everything is ‘in our head’, yet I believe our attitude and way of thinking definitely has an impact.  The research over the last several decades clearly points to some key truths: 

1. What you think is often times what you experience, and that is made possible by the amazing pharmacopeia within our body that automatically and exquisitely aligns with our thoughts.
2. This miraculous dispensary activates naturally occurring healing molecules that exist within our bodies and when combined with the amazing medicines today it is a strong solution.

Anyway, I find myself in a unique position right now to explore the topic and I find it interesting to think about.  Thanks for all the Positive thoughts!

#2-Social Capital:

In one of my earlier entries I talked about the notion of Social Capital and have felt myself return to this concept this week.  This topic is really interesting to me and something I believe is worth a much deeper exploration. 

What is Social Capital:  It is the collective value of your various social networks that trust you as a person and are willing to help you based upon the reciprocity that occurs because of how you made that person feel during past interactions. It is the unspoken currency that makes people feel valued, worthwhile, and important. The funny thing about it is that your intent is not to build any “net worth” in fact from the surface it could seem that you are decreasing your ability to create worth. What most people really desire is connection with other humans in a genuine and pure way, and you get that when you serve others in whatever way you are capable.
In my case, I continue to be amazed by the actions of my network these past few months:

• My social network helped me to make connections with the finest oncologists in the country in a matter of days.  They actually got the doctors/support people to call me and to facilitate discussions about my situation
• Friends from all different angles have brought me healing crystals, tea from trees in upstate New York with special properties, and several very tender tokens of love have shown up at the door step
• 800 “Team Maddog” bracelets have been created and sent all over the world, websites have been started, MaddogPups Instagram page has kicked off, fund raising has been done, love and acts of time and service have been rendered towards my family
• Henry’s travel baseball team, that he is no longer playing on, dedicated the balance of their season to “Team Maddog” and went on an amazing run to finish #2 in California!
• Work colleagues have been willing to do anything to assist me, and my old firm is hosting a workshop on my behalf
• A good friend has been helping with food preparation, juicing, rides and whatever we need 
• The schools, coaches and work places have been understanding, flexible and supportive
• All sorts of vegetables and fruit show up at the house on a regular basis from my church community to keep the juice flowing
• My gym where I work out has hosted workouts on my behalf and in the month of January is having a month long dedication called Maduary
• People grew hair all over the place in November in support of MadVember! Some of the ladies with hairy legs will be memories I will never forget…talk about commitment!
• The cards from all over the world and blog and email notes are amazing, I mean if I can’t crush this crazy disease, something is amiss - the faith and power and actions of all my friends is enough to move a mountain!

I could go on, and I hope you can see why I am again reflecting on this concept of “Social Capital.” There is true tangible and intangible value in all of the above things that make my life more interesting, valuable, easy, fast, efficient, fun, exciting, safe, etc. The intangible part is that others who are removed sometimes benefit from the acts of people and they just happen to be in the right place at the right time. 

I was pondering this the other day as I was driving home.  We just had a major storm in Santa Cruz and the tide was high leaving debris all over the roads.  I drove by the harbor and a huge log was in the middle of the street and was blocking traffic - no one was doing anything about the log but traffic was a mess - so I quickly thought “I think I could get that log out of the way.”  I pulled over and tried to recruit 2 people to help me to move the log.  Both of the men said no. One guy said, “someone will come along from Public Works at some point.” Confused by their lack of being willing to help, I safely stopped the traffic and pushed the log out of the way myself. I had one of those Hulk Hogan moments! 

Everyone drove by and cheered, honked their horns, gave me a thumbs up, a big smile, yelled cool stuff at me, and within minutes’ traffic was flowing again. For a minute I had an infusion of positive vibes! Many people intangibly benefited from my actions because it allowed people to get to work/school on time, saved gas, maybe prevented an accident, kept someone in a good mood, created less stress, observed someone taking action for their benefit, etc.

If we looked at Social Capital from an organizational perspective, there are many companies today that are trying to give back to the communities where they exist---Xactly Corporation  (a super cool start up in San Jose www.xactlycorp.com) follows the the 1-1-1 pledge, where they give 1% of their product away, 1% of their employee’s time away, and 1% of our resources to support the effectiveness of the social sector. Many companies have similar programs and it builds their social capital. The generations of today (for the most part) are very in tune with not just working to make money, they want to do cool work and make a difference, there is much to learn from the rising generation!

When we all leave this life, we will take our knowledge and relationships, that’s all. Our earthly existence is a short period of time and I worry that I sometimes I get focused on the wrong things that don’t really mean that much in the end.

I love all of you and hope you have a great holiday season! They say you are a combination of the people you hang out with, if this is true, I owe all of you a huge thank you for what you have given me past, present, and future! 

Live Aloha!

Greg 

​150 THINGS YOU CAN DO TO BUILD SOCIAL CAPITAL?  (Harvard’s Kennedy School)

Social capital is built through hundreds of little and big actions we take every day. 

1. Organize a social gathering to welcome a new neighbor
2. Attend town meetings
3. Register to vote and vote
4. Support local merchants
5. Volunteer your special skills to an organization
6. Donate blood (with a friend!)
7. Start a front-yard/community garden
8. Mentor someone of a different ethnic or religious group
9. Surprise a new neighbor by making a favorite dinner–and include the recipe
10. Tape record your parents' earliest recollections and share them with your children
11. Plan a vacation with friends or family
12. Avoid gossip
13. Help fix someone's flat tire
14. Organize or participate in a sports league 
15. Join a gardening club
16. Attend home parties when invited
17. Become an organ donor or blood marrow donor.
18. Attend your children's athletic contests, plays and recitals
19. Get to know your children's teachers
20. Join the local Elks, Kiwanis, or Knights of Columbus
21. Get involved with Brownies or Cub/Boy/Girl Scouts
22. Start a monthly tea group
23. Speak at or host a monthly brown bag lunch series at your local library
24. Sing in a choir
25. Get to know the clerks and salespeople at your local stores
26. Attend PTA meetings
27. Audition for community theater or volunteer to usher
28. Give your park a weatherproof chess/checkers board
29. Play cards with friends or neighbors
30. Give to your local food bank
31. Walk or bike to support a cause and meet others
32. Employers: encourage volunteer/community groups to hold meetings on your site
33. Volunteer in your child's classroom or chaperone a field trip
34. Join or start a babysitting cooperative
35. Attend school plays
36. Answer surveys when asked
37. Businesses: invite local government officials to speak at your workplace
38. Attend Memorial Day parades and express appreciation for others
39. Form a local outdoor activity group
40. Participate in political campaigns
41. Attend a local budget committee meeting 
42. Form a computer group for local senior citizens 
43. Help coach Little League or other youth sports – even if you don't have a kid playing
44. Help run the snack bar at the Little League field
45. Form a tool lending library with neighbors and share ladders, snow blowers, etc.
46. Start a lunch gathering or a discussion group with co-workers
47. Offer to rake a neighbor's yard or shovel his/her walk 
48. Start or join a carpool
49. Employers: give employees time (e.g., 3 days per year to work on civic projects)
50. Plan a "Walking Tour" of a local historic area
51. Eat breakfast at a local gathering spot on Saturdays
52. Have family dinners and read to your children
53. Run for public office
54. Stop and make sure the person on the side of the highway is OK
55. Host a block party or a holiday open house 
56. Start a fix-it group–friends willing to help each other clean, paint, garden, etc.
57. Offer to serve on a town committee
58. Join the volunteer fire department
59. Go to church...or temple...or walk outside with your children–talk to them about why its important
60. If you grow tomatoes, plant extra for an lonely elder neighbor – better yet, ask him/her to teach you and others how to can the extras
61. Ask a single diner to share your table for lunch
62. Stand at a major intersection holding a sign for your favorite candidate 
63. Persuade a local restaurant to have a designated “meet people” table
64. Host a potluck supper before your Town Meeting
65. Take dance lessons with a friend
66. Say "thanks" to public servants – police, firefighters, town clerk…
67. Fight to keep essential local services in the downtown area–your post office, police station, school, etc.
68. Join a nonprofit board of directors
69. Gather a group to clean up a local park or cemetery
70. When somebody says "government stinks," suggest they help fix it
71. Turn off the TV and talk with friends or family
72. Hold a neighborhood barbecue
73. Bake cookies for new neighbors or work colleagues
74. Plant tree seedlings along your street with neighbors and rotate care for them
75. Volunteer at the library
76. Form or join a bowling team
77. Return a lost wallet or appointment book
78. Use public transportation and start talking with those you regularly see
79. Ask neighbors for help and reciprocate
80. Go to a local folk or crafts festival
81. Call an old friend
82. Sign up for a class and meet your classmates
83. Accept or extend an invitation
84. Talk to your kids or parents about their day
85. Say hello to strangers
86. Log off and go to the park
87. Ask a new person to join a group for a dinner or an evening
88. Host a pot luck meal or participate in them
89. Volunteer to drive someone
90. Say hello when you spot an acquaintance in a store
91. Host a movie night
92. Exercise together or take walks with friends or family
93. Assist with or create your town or neighborhood's newsletter
94. Organize a neighborhood pick-up – with lawn games afterwards
95. Collect oral histories from older town residents
96. Join a book club discussion or get the group to discuss local issues
97. Volunteer to deliver Meals-on-Wheels in your neighborhood
98. Start a children’s story hour at your local library
99. Be real. Be humble. Acknowledge others' self-worth
100. Tell friends and family about social capital and why it matters
101. Greet people
102. Cut back on television
103. Join in to help carry something heavy
104. Plan a reunion of family, friends, or those with whom you had a special connection
105. Take in the programs at your local library
106. Read the local news faithfully
107. Buy a grill and invite others over for a meal
108. Fix it even if you didn’t break it
109. Pick it up even if you didn’t drop it
110. Attend a public meeting
111. Go with friends or colleagues to a ball game (and root, root, root for the home team!)
112. Help scrape ice off a neighbor’s car, put chains on the tires or shovel it out
113. Hire young people for odd jobs
114. Start a tradition
115. Share your snow blower
116. Help jump-start someone’s car
117. Join a project that includes people from all walks of life
118. Sit on your stoop
119. Be nice when you drive
120. Make gifts of time
121. Buy a big hot tub 
122. Volunteer at your local neighborhood school
123. Offer to help out at your local recycling center
124. Send a “thank you” letter to the Editor about a person or event that helped build community
125. Raise funds for a new town clock or new town library
126. When inspired, write personal notes to friends and neighbors
127. Attend gallery openings
128. Organize a town-wide yard sale
129. Invite friends or colleagues to help with a home renovation or home building project
130. Join or start a local mall-walking group and have coffee together afterwards
131. Build a neighborhood playground
132. Become a story-reader or baby-rocker at a local childcare center or neighborhood pre-school
133. Contra dance or two-step
134. Help kids on your street construct a lemonade stand
135. Open the door for someone who has his or her hands full
136. Say hi to those in elevators
137. Invite friends to go snowshoeing, hiking, or cross-country skiing
138. Offer to watch your neighbor’s home or apartment while they are away
139. Organize a fitness/health group with your friends or co-workers
140. Hang out at the town dump and chat with your neighbors as you sort your trash at the Recycling Center
141. Take pottery classes with your children or parent(s)
142. See if your neighbor needs anything when you run to the store
143. Ask to see a friend’s family photos
144. Join groups (e.g., arts, sports, religion) likely to lead to making new friends of different race or ethnicity, different social class or bridging across other dimensions 
145. __________________________
146. __________________________
147. __________________________
148. __________________________
149. __________________________
150. __________________________

I realize I just posted a couple of days ago…but given the events of yesterday…and that many of you are in commute for Thanksgiving…I hope I can provide a little bit of levity while you are stuck at the airport or in traffic or dealing with mother in laws/father in laws, grandkids, kids, etc.

Health Update: all went well yesterday with my Infusion…no major issues.

Funny part of the day:

Every week I get my blood tested, some weeks they take more than others…yesterday when they started taking my blood...after two vials my blood stopped flowing.  They said, “have you drank anything this morning and I said, “no”, so I had to drink a bunch of water, an Odwalla protein shake and then my blood started flowing again.  I tell you this because this excessive drinking is context for the rest of the story.

When I got back to Mt. Zion Hospital and began my infusion (I have to shuttle between Parnassus and Mt. Zion for various tests—they are two different hospitals that are part of UCSF) I needed to go to the bathroom.  It is no small ordeal given the set up when you get an infusion, I have two IV’s in me…one of them on the right arm and one on the left and there are four different lines running into the IV. The bags of fluid are on a tower that allows the fluid to drip down.  Also on the machine are monitors and lights, it makes noises and annoying sounds and it is about 7 feet high. The total amount of fluid they put into you is about ¾ of a liter…so that is quite a bit combined with all the water and Odwalla I had been drinking.

I got to the bathroom and someone was in it…so I patiently waited and after a couple of minutes I knocked just to make sure someone was alive in there…an older lady screamed something back and a few swear words, so I just sat patiently…clearly thinking her situation was worse than mine.  A nurse came by and said I should try another bathroom…so I tried and that one was busy as well.  So I thought, the old lady has to be about done…so I walked back (more like skipped…get the visual…I was in a hurried situation but trying to look totally in control as I passed the nurses station and the other patients) to the original bathroom…and by now I was feeling it…I needed to go.  Something about the power of the mind when you get close to a bathroom…that force is real! The power of suggestion moves things along for sure! A nurse came by and knocked on the door and the lady yelled back “I am going as fast as I can.” We both just looked at each other and said, “well…she is on her own program…no hurrying her up.” I learned later she had been coming there for 14 years and was a grumpy old lady.

At this point, I am in serious need to go, I start doing the old fox trot in place, trying to stay out of view ( I actually found a little area that was a dead end and just walls and tile floor where I could see the bathroom door…I start to try and pinch off the flow as best as possible, I even go into the deep crotch sitting position to try and alter the flow…but my IV connections only allowed me to squat so low, I tried to think of random topics to avoid thinking about going to the bathroom…but what can I say…the machine was still flowing IV into my veins and I could just not keep it in…I remember thinking…“I gotta go and it is only getting worse with each drop into my veins of this IV!” I looked around to see if there was somewhere I could go…the only option was straight to the tile floor…I pondered if I should make that move…and I just could not do it right on the floor…so right there in the infusion room around a corner…I wet my pants…I felt that warm feeling flow down my legs, saw the nice levis get a little darker, my shirt tail and t-shirt got into the flow as well as my compression socks given the position I was in…and well there you have it…I was a mess…sock to shirt and everything in between.  The cute nurses that I have been successfully building/flirting with over the last month…now they see me in a completely new way…not quite sure how I am going to recover from this one. They were starting to like me and even saved me the best spot for my infusion that day.  Who knows where they will put me next time?

The old lady finally came out of the bathroom, but it was obviously too late.  I made it into the bathroom and I still had more to go…so I was successful in pinching some of it off…and at this point I saw that as a real personal victory and was celebrating it in my mind!  I was proud of myself!  In moments of horror you must find an island of hope and feel some kind of victory!

To make matters worse, while I was in the bathroom all my alarms started going off and the alarms are piercing…pretty soon I had 3 nurses knocking on my door wondering if all was ok. The alarms go off on their own when it is time to switch to a new drug or they can go off if the patient hits certain buttons…so they had no clue why it sounded like a sound machine in the bathroom. 

I had to admit to the nurses what happened and I tried to make them laugh because the only alternative was to cry…they wanted to come in and stop all the noises and I was just trying to figure out how in world I was going to survive the rest of my infusion with soiled clothing?

I finally let them in, and they were proactive enough to bring me some scrubs to wear…but only the bottoms because why would a guy mess up his shirt if he wet his pants?…so that solved my “what am I going to do with my pants but not my shirt!” When I left the bathroom, I saw that my favorite nurse had discovered my urine in the little corner were I was sitting before making it into the bathroom and she had her full protective clothing on like it was some major chemical spill! They were all very nice…saying that there is nothing they don’t see…and this was minor…but let’s be clear…they were trying to make me feel good! 

The hardest part was my shirt…I could not get my shirt off because of the IV’s…there was no way to do without cutting off my shirt or undoing the IV’s…it was a serious predicament. I walked back to my infusion area with my urine soaked thick cotton shirt that was beginning to smell…my favorite nurse saw the dilemma…she was kind not to make me explain the entire scenario!  We finally undid the IV’s so I could take my t-shirt and shirt off that were all messed up! It was no easy solution…there I was almost naked with all these nurses trying to figure out a solution, my scrubs were barely staying on around my waste, I was glad I still had somewhat of a summer tan left over and did not completely look like a loser…I actually found the situation “Fraught with Humor” (a great line from the Parent Trap Movies)…so I tried to create some fun at my expense!

I could not help but reflect back that the last time this happened to me was in kindergarten at Nimitz Elementary in Sunnyvale, CA…it feels like yesterday but it was 48 years ago.  The bathroom was connected to the classroom and for some reason I could not get the pants down in time and boom…I felt that warm feeling flow down my legs.  I remember being so embarrassed that I did not come out of the bathroom.  They thought I was lost and couldn’t find me for some time, I think they even called my mom at home wondering if I wandered home…and then in the corner of the bathroom there I was.  I remember getting sent home and then I had to have a back up set of clothes at the school.  I remember not wanting to tell the other kids why I had extra clothes. I was hoping to make it 50 years before I re-enacted that same experience…but I guess I will settle on 48!

The nurses gave me a nice plastic bag to take my soiled clothes back home in…very similar to the bag I used in Kindergarten! Jan has declared that maybe it is time to add “Depends” to the shopping list before I go up for my next infusion!  

I told Henry the story last night and he said he would have found a plant to go in…nice suggestion but no plants were around in my private corner.  I am open to other good ideas!

Time + Tragedy = Humor…so let the humor begin!

Have a great holiday!!

Health Update: I had a great week.  Side effects have diminished, my energy is back up, I was able to do more things around the house, I rode my bike, worked, gained some weight, and enjoyed reading some books. In the third week before your next dose of Chemotherapy they say this is typical because your platelet count goes back up…and hence your internal systems function like normal.  Per my last entry…when you are happy internally you are happy externally!

If you are wondering what it feels like to me to have my lung cancer on a day to day basis (everyone is different)…I think I would summarize it by saying - my chest is tight, my breathing is constrained, I cough a lot, my speech pattern is not normal, my throat is sore, curious what new side effect might pop up, my energy level is less than normal, talking too much is difficult (for me this is a tough one and maybe a big blessing for all of you!), and besides that life is great!...those internal things are minor and I would never would have told you those things if it wasn’t for this blog and people wondering…on the outside all looks good with my MadVember Beard! 

I experimented this week when someone asked me how I was doing, I said, “I’m fine except that I have cancer,” and they just had no idea how to respond…I helped them out and smoothed over the awkward moment…it was fun!  Sometimes we don’t expect to get the truth when we ask questions! 

I go to UCSF on the 23rd for Infusion #2…so next post I will let you know how that goes!! My daughter Ella is going to go with me, so it will be interesting to be with her.

Reflections:

I have referred to it over the first 5 entries’…but something came more clear for me this week as I was talking to my friend who is an Oncologist Nurse in Santa Cruz.  She said, “one of the reasons I love this work, is that the conversation changes when people have cancer…it is amazing to be a part of people’s life during this period.”

I have obviously felt this, tasted it, seen it in my own experience over the last several weeks and am captivated trying to understand why? When you change your internal frame of reference all of a sudden everything looks different. 

She is right on…when you get Cancer it changes the conversation…clearly other things change the conversation as well...but in general something potentially life threatening, with lots of uncertainty and people having a mix of experience with different outcomes…the context is shifted enough to cause us to behave in a different way than how we behaved seconds before learning this information.

New thoughts  - new choices - new actions/behaviors - new experience/results = new feelings  that in turn inspires new thoughts and the cycle repeats…is the formula that cancer fits into…just by getting diagnosed it begins to create new thoughts & feelings that in turn feed the chain of events that create new actions from you and from others around you…and that in turn creates a different experience.  

Our ability to change the results/experience in our lives is a very difficult process…over the years I have read, studied, pondered on habit changing, change and transition, human development, etc.…and the facts are pretty clear….most of us have a very difficult time changing from the “identify” that we have patterned for ourselves. For many that pattern is amazing…so maybe there is no reason to change…for others change could be a good thing.  I always have thought that unless we are growing, learning, and evolving that we are potentially not continuing to develop as human beings, and that we must continually evolve as the world around us is changing. 

If we score ourselves from 1-10 across various aspects of our lives, (spiritual, physical, emotional, financial, professional, relationships with the various people in our lives, etc.) and if there is room to get better or even to stay the same given the changing context then this conversation is relevant.

I am interested in the topic because as a teacher/coach/trainer/consultant over the years I have always tried to teach people the mindset/skills/tools to have a conversation that is meaningful and causes concerted action.  This has taken the shape of doing organizational training work, outdoor adventuring, strategy work with executive teams, organizational change and development, figuring out how to drive sales growth and improve the sales conversation, problem solving and resolution of difficult issues with unique stakeholder groups, how to effectively give a presentation that promotes action, and lately lots of work around how to enhance Innovation within the walls of your company.

The fact is that changing the conversation with people is very, very difficult. Many people espouse a desire to shift but very few seem to actually be able to make it happen. So I hope you can see why getting cancer for me has been fascinating because I have seen the conversation shift before my eyes…and I am intrigued to explore what we can learn from this and how we can integrate some of the amazing aspects of this into each of our lives more fully without having to experience a seminal event.

The human condition is so tender, we are sensitive human beings that are easily impacted by words someone uses, the way someone looks at us, and the things people do. When we know that people genuinely and sincerely love us and want the best for us, our confidence, outlook, and ability to face uncertainty and challenges goes up.  It changes our Thoughts-Options -Actions-Experience/Results - Feelings and then we are able to create new patterns of behavior that drive us towards wanting to get a 10 across the areas of our lives that we are interested in improving. 
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I have been observing the current events of this week with the crisis in Paris and the horrific actions of ISIS…the conversation/situation has changed around the world. We can no longer go back to the way it was, the context is different and the impetus for action is real.  In my work, we call this kind of situation a “state change”…meaning that it is impossible to go back to the way things were.  Simple example…if you have a cup of hot water and put your chamomile tea bag into that water…the water changes to tasty tea and it is impossible to change that tea back to plain hot water…that is a state change.  

So cancer is a state change, I cannot go back to the way things were and my life view is a little different as a result.  I hope this kind of interaction and human connection will not go away…but the human condition is such that we all have very busy and complex lives and must focus on what is critical at the time.  I know that the energy will subside and my hope is that each of us can figure out how to keep this human connection alive with those we associate with. For me, this is a state change that I want to make permanent as best as possible and I’m thankful for this experience, it is a gift in my life.

I believe the benefits for us and for others is quite lovely and piercing to the soul. I think it was what we all agreed to before we came to earth. We said we would help each other down here, in fact I believe we are all connected as brothers and sisters and hence it only makes sense that this human quality of love towards your brother or sister would come out during a difficult time. Somehow I think we tap into “The Ties That Bind” (Bruce Springsteen documentary about his 1980 album “The River” premiered last Saturday in NYC…the documentary will air on HBO Nov 27th. Worth a watch!) us all together regardless of our differences, and we feel this amazingness that is called love in a real way. This gives us confidence to move forward in the midst of the trials and challenges that are sure to come our way. 

For some reason there are many people that do not want us to be successful…as strange as that sounds…we must help people to fight against this tide of negative energy and insecurity from others. We must rejoice in the success of others, not see it as a threat to us, but learn and grow from it! I remember many years ago, one of my friends that was a professional athlete said, “it is just amazing the number of people that do not want me to be successful.” This was shocking to me but I realized it was true.

So what do we do?

It takes time to create connection and common experiences that bind us together.  It is hard to jump straight to this connection; there needs to be some type of exchange of human interaction to begin to create the bonds, hence that is why service is such a key element in the equation. Doing something for someone for no reason is what often begins the cycle of developing a connection. At work and at home we create this by the effort we put in, the acts of service we perform, the commitments we make and keep, and the way we go about accomplishing our tasks.  This is how social capital is built. We cannot expect it to just happen, it requires energy and work.

Along the way it is important to express your appreciation…don’t wait…never wait!  Appreciation might not get a second chance and something always seems to change with time.  Don’t let those moments pass to make someone feel good about themselves.  There is no greater gift than to build and enhance the self-confidence and skills of a fellow human being. This in turn builds their internal fortitude to press forward and is expressed in their outward behavior.

A few off the cuff thoughts about how cancer has shifted my internal thoughts:

• I would say I am more conscious of every moment
• More open in telling people how I feel
• More desirous to help those in need
• No need or value in fighting or getting upset over anything
• The social capital you build up is gold
• Slow down…don’t need to move so fast
• Appreciation for those with life altering illnesses or diseases - mental or physical
• Increased desire to see my kids progress in their lives and be a part of it
• Glad for the life I have lived, the time I have spent with kids, wife, & friends
• Deeper appreciation for parents who have lost a child or have serious challenges
• Greater awareness of the amazing friends I have
• How amazing people are and how connected I believe we are as a big family

I started this entry with the question “How do we change the conversations is our lives?”

I’m not sure what the total answer is to this question, and it will be different for each person. Start pondering with me…I guarantee we will get inspired as to what the course of action is for each of us if we are sincere in our inquiry.

Maybe it is to express appreciation to your significant other daily, let your kids know how much you love them. Maybe it is go to church and get involved, do more service, say more prayers, take time to meditate, read, get up earlier, workout, eat better, lose weight, be thankful for your health and clear mind, let go of your past, maybe your last relationship did not work out…learn from it and move on….don’t hold onto the past.  Maybe you want to be a better worker, better parent, better provider, neighbor, friend…whatever it is…start thinking about what actions you can take to create new thoughts that will create new choices and new feelings and actions and hence change your life experience.

My diagnosis of cancer only potentially means that it is more certain that my life could end earlier than yours. Both our lives might end tonight when we drive on the freeway or when we are walking across the street or when we ride our bikes down the road….it is when things are more known that we are somehow able to shift our behaviors. Let’s change this. 

Thanks for reading my ramblings.  I know it can be scary to jump into someone’s thought pattern…but this is the stuff I think about…so welcome to my world!

Have an amazing Thanksgiving week…this is my favorite holiday for many reasons…the waves are always good, snow riding begins, no pressure to give presents, just hanging out with family/friends, great food, and the weather in CA is always beautiful!

Lots of Love for all of you! Go Team Maddog!

Greg

I received my first chemo treatment of Carboplatin and Alimpta (Pemetrexed) and the trial drug-Demcizumab/placebo on November 3rd.  When you get my brand of chemo, you sit in the infusion room on the 5th floor of the hospital and for 2.5 hours and they put different fluids into an IV that leads the fluid into your arm vein.  Each bag of fluid takes 20-30 minutes and then you have to rest for 20-30 minutes before they begin the next round.  Just imagine you went to get a mani or pedi at the local salon…chairs lined up, people all doing their own thing, looking at everyone, trying to figure out who is who, lots of noises, foreign languages you don’t understand,…that is almost the scene…accept they don’t offer you $5 pictures on your toes….”good price for you."

The infusion rooms are nice, clean, open rooms with 2-4 people sitting around getting some type of medicine and there are lots of nurses and other folks helping out. You can have one visitor to be with you and there are windows so you can look down on the busy streets of SF and just imagine what “normal” life must be like.  The normal reflection is curious in that as a cancer patient you look normal, but on the inside you are not normal…as I sat in the chair trying to convince myself that I was normal, I was just reminded that regardless of how normal we think we look, what is going on in the inside is what really determines how you are doing. 

I found myself reflecting on a time when I was just out of college and a bunch of us were sitting around talking about various things and other people.  There was some fun being poked at one of our acquaintances, and one of my friends said to all of us, “if you guys knew his story, you would not be saying the things you are saying.” This struck me to the core, and I remember feeling that his words were so so so true….and I knew this, but I had let the conversation slip into the easiness of talking about other people in a non-productive way. I was mad at myself to have to continue learning a lesson I thought I had learned many years prior…but clearly had forgotten.  

The first I remember learning this lesson was on my LDS Mission to Montana. The most fascinating part of the mission experience was learning the “story” behind all the unique people you met….it was honestly one of the most amazing experiences to have assumptions about someone and then to realize how wrong you were! As you can guess, I would make a game out of meeting new people, making some immediate assumptions (thin slicing as they say), and then trying to see if I was wrong or right…knowing me I probably kept my own batting average and had some quantitative way to make me feel like I was an all star…all from just talking to people at the post office or on the street…probably too much information about my wacky brain…but I have always enjoyed creating a little competition for myself if for no other reason to keep me entertained and to create my own experimental playground.

So while I sat in the chair with an IV in my right forearm, tons of hospital sounds beeping everywhere, latex gloves, masks, everyone in scrubs, people getting transfusions….and just wondering…”you know what…none of these people know me, and I don’t know any of them…but if I could learn their story it would be very entertaining and inspiring…even the people on the streets of SF….as normal as they looked who knows what is going on inside?"

One of the interesting parts of the day was when I sat in the chair to begin, I got word that the drugs I had been randomized to receive were expired. When you are on a clinical trial (at least mine) they put 3 sets of drugs that all look alike in 3 different numbered bags and then the computer spits out a number and that is the bag I get.  Maybe you get the real stuff, maybe sugar water for the trial portion? Each bag has a different set of drugs and they are administered in a certain order. 

Back to the expiration of drugs…thank goodness for the pharmacist who caught this little mistake.  I was not privy to all of the conversation, but suffice it to say someone either lost their job and/or got some serious feedback.  

Even though Johnathon was not supposed to tell us, we cajoled out of him the behind-the-scene story and he said they tried to blame it on him, and once they started the blame game…he went on the offensive and made sure they took accountability for the mistake. Dilbert would for sure make a great cartoon out of that scene!  Expired drugs in a clinical trial is a bad thing!

The good news was they said, “you have a couple of hours to go kill and if the drugs don’t arrive by 3pm we will not be able to start”.  To Johnathon this was not an option given all he had done to get us ready….and of course he is in our camp now….”these amazing people come all the way from Santa Cruz, do whatever it takes to have the right drugs here before 3pm!” Nice to have advocates…and I have not even told you about how advanced our relationship has moved with Johnathan.

So given we had a couple of hours we said, “let’s go walk around SF…as you know there are not too many cities as great as SF!”. Wouldn’t you know it, we found a killer lunch spot and an amazing massage parlor…what could we do...we had to eat and if you are about to start Chemo…a massage seemed like the perfect prep activity! We got this “couple” cabana and had a wonderful experience.

Once we got back to hospital (very relaxed and ready for whatever they wanted to do with us) we got started. It did not hurt that I had the nicest nurse on the floor in an area they call the cove which is around less people….so the overall experience was pretty good! They are watching you closely to see how you immediately react to the drugs and all went well….so nothing but a good sign!

It was a long day for sure, and we were excited to get home around 7pm, after arriving at UCSF at 8am.

The summary word of the week has been TIRED. I don’t ever recall being so lazy in my life and having little desire to do anything.  I literally could sit on the couch and do nothing all day, no reading, no watching tv, just flat out veggin out….it was crazy…I kept thinking I was going to freak out by not doing anything but for some reason I just felt like a blob and it was perfectly ok to do nothing!

I tried to write this blog several times…but it was useless.  Now that I am in day 8, I can feel some energy coming back and hence I am writing! The craziest part of the week has been my left calf muscle…killing me! I feel like I did 500 calf raises with 150 pounds on the bar bell! You know the feeling (roll out of bed and your legs can’t hold you up…you basically buckle to the ground)  I am sure this will pass but for not working out, I am feeling like I just did a major crossfit calf workout!

It has been interesting to once again just appreciate the simple things in life-ability to breathe, ability to have a desire to get stuff done, watching someone run down the road, being able to sleep thru the night, being able to give someone a hug (they don’t want me touching anyone during chemo for fear I might pick up something they are carrying), going surfing with your son, being able to walk and not be weary, etc.

So what else has been fun this week…. Johnathan…well…we spent two days with him last week…and leave it to Jan…she has his entire life story down. I honestly don’t think anyone has been so interested in him for many years. His parents fled Germany and made it to the states, he was raised by his Jewish grandma and mother, worked to find a cure for Aides for 20 years, and then his mom died of lung cancer.  10 years ago he said they stopped research on Aides because the medicine today keeps you alive and it is no longer a death sentence. Since his mom died of lung cancer, he said he wanted to help find a cure…just like he did with Aides…so he has thrown himself into finding a cure and hence leads all the clinical trials related to lung cancer at UCSF. 

I could tell he felt understood, loved, and appreciated by Jan.  She did her thing and just wanted to know his story and be non judgmental in the process.  As you know when people feel this genuine interest, they open themselves up and connection happens from both perspectives.

A friend sent me a really great quote today that has caused me to really ponder as I have been trying to come to grips with how amazing my community of friends are.  I am honestly blown away at the love people have and the willingness of the human being to be concerned and thoughtful. 

“Until we can receive with an open heart, we are never really giving with an open heart.  When we attach judgment to receiving help, we knowingly or unknowingly attach judgment to giving help.”

I went back to UCSF yesterday and had my first follow up visit.  All went well, and what I did learn was that my next chemo treatment will be a little more taxing on my body, the fatigue will last a little longer, and I am going to get really funny!  So stay tuned for that…we will see what the fingers have to say when I start typing.

Thanks so much for all your love, support, prayers, faith, chants, good vibes, meditations, etc…I feel very powerful knowing that there are so many people rooting for me…everyone of you continues to touch my life in a unique and wonderful way….never stop sharing your thoughts, concerns, feelings, ideas, hopes, etc….I really appreciate all of it. 

Fight on Warriors!!

If you want a Team Maddog bracelet (they are really cool) let Mary Partin (831-818-4106) know via text. Send her your address and she will make sure you get one or she will point you to someone who may have some in your area.  You could also let me know and I will make sure you get one!

How is the MadVember Challenge going…I hope you are moving and grooving and making it the best month ever...who needs a razor!!