T-1 to the BattleSuite Crowdfund Lift-off
If there’s one thing I remember as an Economics Major at the University of the Philippines in Diliman, it would be the seemingly endless maximization and optimization problems we tackled as undergraduates. For some years after graduation I thought I didn’t like the subject of Economics much. I did enjoy the required advanced mathematics subjects though and I took more of those beyond what was required. With Economics, however, I told myself I didn’t learn much, and downplayed the value of my education. Nearly 3 decades later, I realize my four years as a student at the UP School of Economics did inculcate something very deep into me. It is this idea that every choice, whether micro or macro can be optimized for a best possible outcome at the least possible cost. It was here too that I learned the concept of “satisficing”, which to me was simply another word for “settling”. “Satisficing” meant decision making that yielded mediocre results born out of peer pressure or groupthink. Even then at the age of 18 or 19, I detested the idea of satisficing.
In my mid-20s, I yearned to learn about how the world worked in more concrete terms (as opposed to the somewhat abstract science and art of Economics) so I decided to pursue graduate business education. My father, himself an economist, earned two graduate degrees in Economics from the University of the Philippines and the University of Wisconsin at Madison, respectively. My Dad is also an early adopter of consumer technology. As a young banker on the fast track at Citibank, he could afford to buy personal computers before most people knew what they were. Throughout the late 70s, early 80s, we were among the few in our neighborhood to have the Commodore, the Atari, the Radio Shack TRS 80 and the first versions of the original IBM PCs. I learned to do simple programming on a borrowed Apple 2. My Dad let me use all his machines since my early teens. At some point, I inherited the TRS 80 from which I learned to do command line programming. With this magical machine, I could do word processing and spreadsheets way before Microsoft came into the picture. I grew up an avid computer (and sci-fi) enthusiast.
So when I was accepted for an International Fellowship at the Freeman School of Business at Tulane University some years later, I wanted to learn all the difficult heavily quantitative business subjects, eschewing the “softer” ones, thinking those are easily learned. Though in hindsight this is not necessarily so. Nevertheless, then at the age of 26, I wanted to learn the “hard quant” subjects and completed all the requirements to earn “concentrations” in Finance, Decision Science, Information Management, and Operations Management.
My favorite was Decision Science. I thought it was such an elegant and beautiful discipline. I very much enjoyed the process of choosing the best alternative among several choices in the context of business strategy. All of the problems were complicated by the lack of information on factors that affected the decision. What was fascinating about Decision Science is that it can be applied to real-world problems for real-world solutions.
With Economics, we were always trying to optimize profit, or revenues or GDP and always trying to minimize the cost of labor, the cost of materials, or other costs such as externalities based on complex equations that assumed the interplay of several dependent or independent variables. With microeconomics, we wanted to optimize the wealth of individual nations or smaller eco-systems like states or cities. With macroeconomics, we looked at economic indicators in the aggregate, by nation, by region, by continent, and as a whole planet.
With Decision Science, we grappled with the question of which choice among several compound alternatives would have the highest probability of the best possible outcome (eg. profit or ROI). Decision science as mathematics has important applications in business and economics with the usual objective of optimization. Most of the time, the goal was to maximize shareholder wealth or the health of the firm.
I believe this very specific training in economic analysis and decision science built in me a strong foundation for a deep and supple intuition AND a logical process on how to craft an effective battle strategy against cancer. I believe this process can add much needed perspective and value to any health challenged person, regardless of what the disease is.
Think about the human body. What if we think of it as a self-contained planet? Think of it as a planet comprised of countries and nations containing millions of inhabitants (aka microbiome, etc…). The human body can be a macroeconomy, with all the nations within it (aka organs) operating as interdependent ecosystems within the whole. Without my realizing it, I was actually thinking of the human body, my very own body, not merely as information system (as some would theorize) but as a living breathing complex economy.
The difference is, instead of optimizing GDP, shareholder wealth or profit for this economy, it would be the HEALTH of the human body as an economy that is optimized. The health of the macro economy (human body) is dependent on the HEALTH of all the ecosystems that operate within it. We can identify variables (input) that determine the function of health (output or outcomes). We can even put together equations (or algorithms) that can predict which combination of variables will produce an optimized solution versus just a satisficed one (eg. one doctor’s opinion). The human body as economy is constrained by supply and demand, and external and internal requirements and resource constraints just like any other economy.
I believe this framework can unlock new ways of problem solving that can eradicate problems in a more multi-faceted approach. Think of the way a military power might lay siege on an enemy city in a time of war. They don’t just do airstrikes, they send in spies weeks or months before. They are ready with ground troops to do surprise attacks around the city perimeter.
Economics may also take into consideration actions that have consequences for the long term.
My oncologists have credited the assertive process by which I approach data gathering and decision making as unique and rigorous. They say it is probably one of the major reasons I am alive and N.E.D. (with No Evidence of Disease) today. That may be true. I try not to leave any stone unturned.
Correct me if I am wrong, but it seems economic analysis may not have found its way into medical research, the clinical process, or patient safety practice. I am puzzled by this because the problem of disease, such as the challenge of cancer, can be seen and analyzed through the lens and process of social science and pure math disciplines, especially since we are dealing here with imperfect information. Have you tried it? If you have, please let me know what you learned. If not, why not?
I have and it seems to really work. I also use it when I act as decision and strategy coach for people dealing with advanced cancer. First we identify specific objectives such as: to decide whether to go into surgery or not; and if so, which kind of surgery, and what’s the best timing. Next we identify the values of the person dealing with the disease. Values are the principles or criteria that matter most to the battler. For example, some of my top values are the optimization of vitality, strength and full body function, which includes flexibility and full range of motion. My value is to be as fully alive as I possibly can in actual experience. I want to have all my faculties and wits about me at all times. That means I don’t like weakness, pain, lethargy or being rendered immobile. My choices maximize the probability of my body’s full strength and function and minimize the loss of “life-force.” These values have influenced my decision to minimize or totally avoid taking narcotic painkillers for example. After discussing values with the person I am coaching, we talk about alternatives, making sure that we have discussed and exhausted every good option available. A high quality decision is partly characterized by a comprehensive set of viable alternatives. The less the viable alternatives in a decision, the quality of the decision likewise diminishes.
From experience, I noticed that sometimes even the most acclaimed physicians don’t mention all of a patient’s alternatives. They just say one or two that they judge to make sense. Though likely well meaning, I doubt these physicians consider all the factors and values important to the patient. How can they when the patient has not done the work of thinking through what’s most important to them as far as how they want to live their lives while in the battle. That makes it unlikely for the patient to articulate their own authentic values even to themselves, and consequently their care team will have no idea.
I don’t compromise on this matter. I make it a point to articulate my values strongly and clearly to myself and to my care team. I don’t settle for choices that don’t somehow uphold my values. I make sure my values are given priority over everyone else’s. That’s because we are talking about my body and my life. I don’t apologize for this. I fight hard to know as broad a range of good alternatives as I can and when I am satisfied no one else can do any better, I make a decision based on my values and what I calculate will give me the best possible outcome.
Imperfect and imprecise as my process is, it has worked and I am alive and N.E.D. today. Somehow I survived even after 10 years of fighting the “emperor of all maladies” mostly alone. I believe good decision making was a tremendous aid in my journey to life. I learned that a good decision is not about perfection, but about progress. I ask myself, will this action significantly move the needle towards an improvement in my health? If not, what’s the point? And if yes, what am I waiting for?
A significant part of my work equipping care-challenged cancer patients for their battle is teaching a simplified but still rigorous decision process. I can sit with them and do a decision coaching session with them where they make a decision based on their own stated values. My job is simply to ask questions and facilitate the process. I teach them about satisficing and how often this has been the default choice of many patients who have abdicated the leadership of their own health care. To UnPatients, satisficing is the enemy.
I enjoyed the privilege of a conversation with 39-year-old Noah Standridge, who was feeling extremely anxious about a planned surgery to remove a lung metastasis derived from colon cancer. Noah had a stint as faculty at the Stanford D-School not long ago, holds a Masters in Forestry at the University of Florida in Gainesville, and mentored MBA students at the Stanford B-school. Noah is a very smart, thoughtful and educated fellow. When I spoke to him for the first time a few months ago, I knew something about lung surgery because in August 2014 I went through a lobectomy myself to excise the entire lower lobe of my left lung due to what the CTScan showed to be a 7cm metastatic tumor there.
I was surprised that Noah was not given any other alternative but an open lung thoracotomy when his tumor was only measured 1.5cm. As far as I know tumors as large as 3cm can be excised with VATS (video assisted thoracic surgery). VATS are great because instead of a long 11 cm incision and getting your ribs spread with heavy duty tools and the surgeon putting his hands into your chest cavity, 3 small incisions are made instead. Tiny cameras and small tools are inserted into these incisions which help the surgeon perform the operation with minimal invasiveness. I had watched a couple of videos of VATs surgeries online and had even seen one surgeon do a complete lobectomy, excising an entire lobe with just 3 small incisions.
I fought hard to get a VATS for myself instead of a full lobectomy but Dr. Joseph Shrager, who runs the thoracic surgery department at the Stanford Cancer Center, said that with a tumor as large as what had been in my body and how it was positioned, this was an impossibility. I did get the lobectomy. Dr. Shrager and his team did such a good job that I was up and about a month later even without a caregiver!
With Noah it is a different story. I told him he can probably just get a VATS and have less pain with an even faster recovery period. I told him it might be an overall better experience than if he were to get an entire lobe excised. He said that his doctor had pretty much decided that the lobectomy was his best choice. Apparently his surgeon never even mentioned VATS. But I insisted Noah ASK his doctor about VATS. Noah did so and at first the physician still said it wasn’t the best choice for Noah. Noah went ahead with the surgery anyway assuming it would be a full on lobectomy. He didn’t feel as anxious because he saw me strong, happy and audacious after surviving a lobectomy that excised half of my left lung, effectively removing tumor in my body that was at least 3x bigger than whatever he had. If I can get through it, so can he.
So after Noah was put to sleep in the OR, the two surgeons (there was no available surgical resident on that day so that’s an extra blessing to Noah) looked at his lung through an endoscope and saw that the tumor there was, in fact, VATS-able! They decided to perform a VATS excision right then and there, careful to cut away every suspicious looking tissue around the vicinity of the tumor. They ended up just excising a segment of a lung lobe thus sparing Noah from a more high-risk thoracotomy.
The day after his surgery, Noah texted me from the hospital to say that he was doing okay. He also nonchalantly mentioned that what he got was VATS and not a thoracotomy. I was ecstatic! I jumped up and down in celebration! This is an UnPatient Triumph and Noah did not know it yet. But he did eventually =)
This was just a few months ago. Noah is doing very well today and despite moments of doubt and anxiety is actually quite strong. He was pronounced N.E.D. after his VATS procedure and today swims, kayaks and surfs in the open ocean. He also helps take care of his 5 young children, ages 2 to 12. How’s that for vitality?!
I also helped him and his wife set up a crowdfund to help them with the transition from treatment through Stage 4 cancer (chemo and 2 major surgeries) to the next evolution of their life as a family. Please do read their story here and consider giving them a leg up as they work on finding a new home and Noah figures out what to do next as far making a life for himself and his growing family.
Noah and his wonderful wife Brinly, a poetic writer who tells sweet stories about family life in her blog called “The Standridge Family,” asked me once why is it I have not done for myself what I do for others such as themselves.
I thought about that and realized that it was true that I did spend quite a bit of time helping others and doing volunteer work because frankly benevolence is part of my healing. It is true that 10 years of fighting cancer alone in four different countries depleted my resources. But I can’t just do any job now. I have no desire to climb the corporate ladder in a large media company like I did before. I pondered and prayed what to do next. It became clear that It was important to keep pursuing my own best health and also help others in the process. After all, my journey is far from over and I am still in recovery.
Dr. Kavitha Ramchandran, Head of Supportive Oncology at the Stanford Cancer Center told me once that she feels I will do very well in such a work, which is also in a way, her work. As my wise and brilliant supportive oncologist, Dr. Ramchandran knows me very well by now. I am deeply grateful for such an encouragement.
If what I will do next needs to be sustainable in terms of keeping my interest, what could be more compelling than constantly learning and taking action to keep myself well, healed and fully alive while also potentially saving hundreds of thousands of lives in the process? The former is a necessity, the latter a privilege. Like my best friend said to me once, “If you’re dead, you can’t do anything”. She was right. I have dreams that I want to see come true. But if I’m dead, I won’t even be able to dream. It is imperative that we care for ourselves so that we increase the probability that our dreams be fulfilled in our lifetime.
The truth is I find myself ethically bound to share what I know with humanity. I lost 5 friends to cancer just this year alone. I lost my best friend and beloved grandfather to cancer. And yet I live despite a past diagnosis of “dying”. If what I know can save even one person’s life, I am duty bound to share it. It’s extremely urgent and the very least I can do.
Now that I am alive, I want to optimize my life and scale this work as much as it can to serve the most people. I hope you can help me equip the world with what I know and what I will continue to discover.
Tomorrow I will launch the very first crowdfund of The UnPatient Revolution. We will be raising funds for the URx BatttleSuite which is a bundle of media and services designed to equip and bolster care-challenged cancer patients for free and built to scale. It is designed to equip battlers with the best and most effective inspiration, knowledge, mindset, strategy and tools to help them lead the charge in the battle for their health.
I invite you to be part of the movement. Please watch out for my announcement of the URx BattleSuite crowdfund launch on this blog tomorrow. Thank you very much!
With warm regards and much appreciation,