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!
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:
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.
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),
In the spirit of Ted Talks Simon Sinek has an 18 minute talk worth watching about the Why Concept:
If you don’t have that much time here is a 5-minute version - https://www.youtube.com/watch?v=IPYeCltXpxw