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Introducing the UnCancer Revolution

The UnCancer Revolution Crowdfund Video

UnCancer: The Revolution to Reverse Stage 4 Cancer

Generosity.com pitch video 1.0

Transcript of The UnCancer Revolution Crowdfund Video

There  were 14.1 million new cases of cancer around the world with 8.2 million cancer deaths in 2012.  Those numbers are expected to rise 70% by 2032.   Today, 1 in 2 men and 1 in 3 women are expected to develop cancer in their lifetime, that’s 40% of the people you know.

Hello, my name is Victoria Ferro and in my world, cancer has been the leading cause of death.  6 of my friends died of advanced cancer in 2015.  All of them were in their 40s or 50s.

These deaths underscore the urgency of finding ways to end this global plague once and for all.  I believe that today, in this particular moment of history, a confluence of new global realities make it possible for a concerted effort to finally rid the world of cancer.

I want to focus on helping the community where hope is most dim, and solutions most scarce.  Stage 4 is the last stage of cancer.  At this stage, a person may be seen as “incurable”, “terminal”, and “dying.”  At this point, cancer is considered a chronic disease that will bring the patient’s life to an accelerated end.

My mission is to offer more hope and more creative solutions to this beleaguered community.   I have a personal stake in this because I am a Stage 4 cancer survivor.

I was diagnosed with a rare form of breast cancer in October 2005.  There’s hardly any research or information about this kind of cancer.   My search for solutions took me to 4 different countries.  8 years and 2 recurrences later in May of 2013,  the Stanford Cancer Center escalated my diagnosis to Stage 4.  By that time the tumor was as large as a melon protruding from my chest with 3 ulcerating open wounds.  Scans also showed a large tumor in my lung that looked like it could be invading several other organs.  3 different oncologists told me that I was incurable, inoperable and dying.   And yet, after a 27 month barrage of treatments that included chemo, radiation, hormonal treatment, and multiple surgeries, Dr. George Sledge, Chief of Oncology at the Stanford Cancer Center made this announcement in August of 2015

N.E.D. Announcement by Dr. George Sledge of Stanford Cancer Center

This is wonderful of course but being pronounced with No Evidence of Disease or N.E.D. does not necessarily equate to remission or a cure.  I need to know what to do to make sure this cancer doesn’t come back.  I also didn’t expect the PTSD that followed treatments.   The disappointment when Dr. Sledge told me I had to keep taking drugs that forced my ovaries to shut down. The trauma from the side effects of chemo such as fatigue, weakness, and bloating, that facilitated an out of control 50 lb. weight gain.   The drastic change of appearance from a beautiful young woman to a fat version of Gollum to someone old and misshapen I  don’t recognize. From the 5 feet of incisions, multiple drain holes that created unnatural shapes and scars reminiscent of Frankenstein. The neuropathy and stiffness of joints that affected my mobility and balance.   And the grief and bewilderment of going through this entire 10 year journey mostly alone. Though I had help, yes much help, I had no other caregiver in the day-to-day but myself.  Many people think I’m superwoman achieving the impossible, but believe me I am not.  It’s been 7 months since my last major surgery but I still have so much healing to do.  Emotional, Physical, Spiritual.

As I grappled with what to do next, it became clear I need to fully concentrate on Recovery and Prevention.   In 2016, my first priority is to pursue my best health and in parallel process, teach others what I learn.

I will leverage my experience and expertise as multi-awarded digital media producer, highly rated university educator, and award-winning essayist for this purpose.  I will teach every significant lesson I learned that brought me from dying to N.E.D.  It is already my practice to attend some of the world’s most elite medical conferences.  I’ve also learned from some of the world’s leading scientists, doctors and experts who can speak to this topic in a fresh and powerful way. I even joined a Protohack to rough prototype an app that will aid me in my own recovery and that could aid others too.  I will evaluate and curate the best knowledge, wisdom and tools that can be found anywhere that can move the needle to a cure or the next best thing.

Taking together all the intelligence I’ve gathered in more than 10 years of fighting cancer and the intelligence I’ve yet to discover, I will offer inspiration and education for Stage 4 cancer patients through unique media and services designed just for them.  Planned resources and services include a strategy manual, mobile app, basic and in-depth training, decision coaching, events and community that can significantly aid Stage 4 cancer patients in attaining their health goals.  The emphasis of the work is digital and online so that anyone with Stage 4 cancer may benefit, whether they are at work, at home or in the hospital bed, wherever they are in the world.

“UnCancer: The Revolution to Reverse Stage 4 Cancer”

Intelligence, Inspiration and Tradecraft for Stage 4 patients and survivors

“Because when you can reverse stage 4 cancer, you can reverse all cancer”

With this new revolution, we

UnLearn – every old myth or way of thinking about this topic.  We live in the beginnings of a massive disruption in the health industry.  And in the ultra-rapid development of science and technology in this field, elegant solutions will be found for complex problems that had never been solved before.

We

UnDo – ravages of the disease and the collateral damage of treatments both physical and emotional

We

UnEarth – solutions for restoration, healing, vigorous function and a vibrant satisfied life

We

UnCancer – because if you’re dead you can’t do anything

According to the World Health Organization, there is a 1 in 4 chance that I will be alive in 5 years.  That’s saying that I have a 75% chance of being dead in 5 years.  That’s a great prognosis compared to the predictions for many other types of stage 4 cancers.  

My mission in instigating The UnCancer Revolution is to upend these statistics.

If you’re a Stage 4 cancer patient, and you want to find a way live fully and enjoy longevity, you need to be part of this movement.

The UnCancer Revolution will dig deep into the subjects of

1) Science

2) Psychology

3) Spirituality,

And finally

4) Strategy that will all these tie disciplines together into a unique and powerful framework.

My oncologists are impressed by the way I ask questions and make decisions.  It appears that my unique process was an important factor in getting to  N.E.D. status.

My internal process was influenced by my graduate studies as an International Fellow at the Tulane University Freeman School of Business, where I studied Decision Science under Dr. Irving LaValle, my late Professor of Decision Theory, the 1996 recipient of the Frank Plumpton Ramsey Medal, which is considered “the Nobel Prize” of decision analysis   

Excellent decision skills are necessary tradecraft for the Stage 4 UnPatient.  UnPatients are people who have taken full responsibility for their own health care and will not abdicate decision making to anyone.  UnPatients are the CEOs of their own health.   Good decision practice is what will set her apart to achieve best possible health outcomes.  I will be teaching this skill in a way that is simple, thorough and powerful.   My goal is to turn Stage 4 cancer patients into powerful creative UnPatients like myself.  

The UnCancer Revolution’s mission is to deliver Intelligence, Inspiration and Tradecraft for the Stage 4 Cancer Patient.  It’s not only going to throw a monkey wrench into the status quo, it may change the Stage 4 experience forever.

Listen to what Kara Alikpala, Founding President of the ICanServe Foundation has to say:

“No one can imagine what it’s like to labor and deliver a child. Only mothers can claim they know. Same  thing for cancer.  It takes another cancer survivor to completely empathize with another . Then there is Stage 4 cancer. Many people think it’s the same as having cancer once and beating it.   Others simply think it means THE END.    But Stage 4 is more than a stage, it’s more than a number. It’s a whole different  universe,   that needs a different perspective, lifestyle, and navigational tools.   There is a huge population of Stage 4 cancer patients with unmet needs. Victoria Ferro has lived to tell. And live and love she has as loudly as anyone cannot imagine.  You cannot and must not ignore what she has to share “

Imagine more and more stage 4 cancer patients, shaking off sadness and shame, standing in their strength, challenging the status quo, being fully equipped to navigate and lead the charge towards their own health goals, empowered to make the highest quality decisions for their lives. Once this happens, I believe that health outcomes will improve.

I invite you to be part of the revolution and take action with this crowdfund today!  The more you give, the more Stage 4 cancer patients will benefit.  The Stakes are High, and we need you with us.  Let us be rid of cancer forever, one stage 4 UnPatient at a time.  Thank you!

 

Economics, Decision Science and the Human Body

Economics, Decision Science and the Human Body

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,

Victoria Ferro

Noah and Brinly Standridge with Micah, Levi, Ocoee, Seqouia and  Juniper

Noah and Brinly Standridge with Micah, Levi, Ocoee, Seqouia and Juniper

Beginnings: Prequel to a Launch

a new rough study of

a new rough study of "The UnPatient Revolution" logo

T-3 to the BattleSuite Crowdfund Lift-Off

In three days, I will launch the first ever crowdfunding campaign for “The UnPatient Revolution”.  The funds will be used to equip care-challenged patients diagnosed with serious disease, in particular patients diagnosed with advanced cancer, with strategies and tactics to help them fight and win the battle to get their health and life back.  

I borrowed the term “UnPatient” from a talk given at what was then called FutureMed Conference in 2013 held by Singularity University at the Hotel Del Coronado in San Diego.  I liked the term so much that I decided to own it and run with it.  The UnPatient takes full responsibility for her own health care.  Beyond being a participant of the quantified-self movement, the UnPatient considers herself the CEO and key agent towards the health and life she envisions for herself.  

At that moment in November 2013, I set myself to be the epitome of the passionate UnPatient, doing every unlikely impossible thing in the quest to get my health back.  I was already operating that way  but I credit Futuremed 2013 for giving me “permission” to unleash myself fully in the strong self-directed approach I fought for from the beginning.  I learned to live bravely into such an internally powerful role.  Never mind that I started with very little resources with no caregiver.  I was determined to live and I was not going to allow the direst of circumstances to discourage me or stop me.

Just a few months prior, in May 2013, I was diagnosed with Stage 4 metastatic breast cancer of a very rare form.  Despite the utter lack of research or data about the type of cancer I was dealing with (except for the Chief of Oncology at Stanford Cancer Center, Dr. George Sledge, calling it an “oddball” cancer), I went ahead with treatments on my own terms, adopting the philosophy and principles I laid out in “The UnPatient Manifesto.”  Incredibly and against all odds, I won, at least for now.

The gap of experience from being told I was dying in 2013 to finding myself very much alive and living near the close of 2015 is a very rich one.  I have learned a great deal in the 10 years of my brand of unconventional fighting.  My original diagnosis had been in October 2005.  Last month I celebrated my 10th year anniversary and being pronounced “No Evidence of Disease.”   What a triumph!!!

From what survives in my gritty heady harsh sublime landscape of memory, I have acquired broad and deep perspective on what it really takes to get from serious illness to true sustainable health.  I have the capacity to articulate and impart these priceless nuggets to others and so I shall.  Now that I am alive, I want to make it worth it!

After seeing so many lose the battle, I feel I owe it to humanity to share my knowledge, practices and principles that work to those who need it the most.  Just a few weeks ago, I lost two friends to advanced cancer within a few days of each other.  I lost my grandfather and my best friend to cancer.   How I wish I had helped all of them with what I know now and what I am about to know.   None of the top medical conferences I attended recently predicted cancer going away anytime soon.  Cancer is predicted to affect one out of every four humans in the planet in a few years.  

The need is therefore extremely urgent.  Thus my decision to work full-time on building what I call The UnPatient Revolution Battlesuite so that I can distill everything I know to a dense set of knowledge, strategies and tools that will arm and equip care-challenged cancer patients for battle with a mind and heart set to win.

I consulted my best friend, genius artist, wordsmith and PR whiz Amor Damaso on what she thought a good logo image could be for The UnPatient Revolution.  She suggested something like the image you see above.  The letter U stands for the UnPatient.  The Rx stands for both for “revolution” and “prescription”.  The logo underscores the most important defining characteristic of an UnPatient.  She leads the charge for her own health care.  She is the top decision maker in the care team. Rx means she prescribes what is best for her and takes action.  This does not mean that she does not listen to the doctor or honor his expertise.  It does not mean she will suddenly take drugs without prescriptions or self-medicate based on her own logic.  The Rx simply means she knows she is the boss and CEO of her own journey.  She knows she is the best person for the job and she always moves forward with this in mind.  I think this rough logo captures what this revolution is all about and for now I am keeping it.  If you have any thoughts about the logo concept or the concept of the UnPatient, please do let me know.   UnPatients are voracious learners so if you have something important to teach me, please do.

Tomorrow I will talk to you about my work as The UnPatient practitioner and advocate/teacher for others.  I will talk to you about my work and friendship with a young man of 38 who was suddenly struck with Stage 4 colon cancer.  He has a beautiful wife and 5 young children ages 2 to 12.  When I met him, he was troubled anxious and depressed after a fresh diagnosis that felt like a death sentence to him.  I’ll tell you about our first conversation and how I got him laughing within the first five minutes. 

I’ll also tell you how I worked with him as decision coach and the amazing results of our time discussing his options and surgery strategy.   I will also tell you how I helped him and his wife bust through every obstacle to finally being willing to create a crowdfund campaign as a means to help them take care of their 5 children while dealing with the pressures of fighting stage 4 cancer.   I saw how the time I spent with him and his family made a difference and continues to make a difference.  I want to continue to do more for him and many others but in very large scale and with high growth numbers.    I absolutely believe it can be done.  I hope you can join me in this quest to help others in a significant way that could very well not just save their lives but also offer inspiration and value to all those around them.  This work can offer priceless value not just to this country (the US) or the present time, but for nations (global impact) and generations.

I leave you with the link to their Crowdfund campaign on Generosity.com.  I hope you can take a look and help give Noah Standridge and his family a leg up in this critical transition point in their life as a family.

Until tomorrow then, have a wonderful Saturday!

With much appreciation,

Victoria Ferro

p.s.  I know its not yet Thanksgiving, but I wanted to show you a video AD I created for a large scale theatrical event I am involved with as videomaker and actor coming this December.  Creative Arts heal humans in a major way.  This is a very underexplored topic as far as what moves the needle towards healing thus this is definitely up for discussion and practice in The UnPatient Revolution.  Thanks again and hope to see you tomorrow!

When Exponential means Priceless

With Peter Diamandis when Exponential Medicine was still called Futuremed (2013)

With Peter Diamandis when Exponential Medicine was still called Futuremed (2013) not long after a tough 12-week regime of chemo

 

Inspiration is value because inspiration can save lives. Think about a person standing on a ledge waiting to jump to her death. If someone says something to her that inspires even a glimmer of hope, she will not jump. With severe life-threatening disease, if you think your situation is hopeless, why even try anything more?  It’s so easy to give up. Might as well go to Oregon and get euthanizing injections.  Or why not just curl up in a fetal position, stop taking meds, think depressing thoughts all day and wait for the inevitable.

Thankfully there are ways to counteract this.

One way is by acquiring knowledge backed by credible science. This is why conferences like Exponential Medicine mean the world to me. I have been following this particular conference and community for 3 years now. In this most elite of cross-disciplinary medicine conferences, I see the solutions that the smartest minds from around the world are working on and I realize that there is, in fact, hope. Some of the solutions I can implement today. For others, I have to wait a few years. They are all food and grist for hope for me. That’s part of why I can be strong despite all sorts of circumstances stacked against me.

That’s why when a doctor tells me “this is your best option” I can say, are you sure about that because I believe there might be a better solution. Have you ever thought about x or y? Most of the time a doctor would not have even thought of an option I put before them. It’s just not in their radar. But it’s in my radar because I make it my business to know what’s out there that can move the needle for me towards getting through stage 4 cancer alive. I will do everything in my power to not just get through this thing alive but be vibrantly healthy, fully functional and strong at the end of it, and thus able to work on my dreams, the dreams God put me on this earth to pursue.

I feel like I got a glimpse of what is at the very heart of Exponential Medicine when I had an encounter with Peter Diamandis on the last day of when Exponential Medicine was still called Futuremed in 2013.  I attended the conference just days after the conclusion of a tough 3 months of weekly chemo.  Given that I am not a physician or scientist, I had to shore up courage to approach Mr. Diamandis and tell him how I felt so inspired and encouraged and to thank him for the conference.  I did get to speak to him and also tell him of my challenge at the time, advanced metastatic breast cancer with an inoperable tumor. I did not go into detail, but oncologists then had told me that finding a cure was highly unlikely if not impossible, and palliation my only recourse.  One oncologist went so far as to tell me I was dying.

What Peter Diamandis did next I will never forget.  He put his hands on my shoulders and looked at me straight in the eye and with full presence asked “Did this give you hope?”  I understood him to mean the conference.   I said “yes!” with gratitude and enthusiasm.  He then gave me the most compassionate and warm hug.  That hug spoke volumes.  This man is authentic and truly wants to help people.  In that human gesture of shared hope, I understood that ultimately this conference at its heart was not just Disneyland for health and technology geniuses.  This is a place where people dream of ways to give people back their lives and create a future for them that just a year or two ago would not have been possible.  They don’t just dream this, they make it happen.

This hope and the knowledge, intuition and understanding gleaned from Exponential Medicine absolutely helped me get to N.E.D. No Evidence of Disease status just a few months ago.   Believe it or not, I got to N.E.D. after 10 years of fighting the disease without a human caregiver.  Exponential Medicine helped give me that gumption.  Check out my previous post to watch a video of Dr. George Sledge, Chief of Oncology at the Stanford Cancer Center make the N.E.D. announcement.

If Peter Diamandis asked me the same question after the conclusion of the 2015 conference just hours ago: “Did this give you hope?”  I would say yet again “YES, a resounding yes!”  Thank you, thank you from the bottom of my heart.  Thank you Exponential Medicine! How you have inspired and educated me to be a rockstar** UnPatient is priceless!  I shed a few tears at the end of this year’s conference because what you do is such triumph. You helped me get my life back. More power to your amazing efforts to exponentially give people’s lives back.

What is also significant is that as an innovator thinker entrepreneur creator, I believe I may have finally I found my tribe.  An ecosystem like no other in the planet.  Now I know why I am still here and very much alive.

What I am about to do, may it be exponential.

**what a couple of oncologists at Stanford call me

N.E.D. Announcement

Stanford Chief of Oncology Makes N.E.D Announcement

Dr. George Sledge Makes N.E.D. Announcement

Chief of Oncology of Stanford Cancer Center pronounces Victoria Ferro with No Evidence of Disease after 10 years fighting Advanced Stage Cancer

Last month I celebrated my 10th year of survivorship from my first diagnosis of Mucinous Carcinoma by Dr. Diana Cua through a core needle biopsy with results coming out October 5, 2005. I also celebrated the pronouncement of my oncologist, Chief of Oncology at the Stanford Cancer Center, that I am finally N.E.D. or No Evidence of Disease, after 10 years of fighting. This same time last year I was still recovering from a Lobectomy that excised one half of my left lung just two months before. December to January I went through 6 weeks of daily radiation and just last May had a major complex large lumpectomy with a free flap abdominal reconstruction. In between and till today I have been taking the hormonal drug called Lupron via a monthly injection.

To be N.E.D. after 10 years of fighting is definitely a milestone but the battle is far from over since I’ve already had 2 recurrences in the past.  A major challenge is keeping another recurrence at bay and that is a complex problem that requires multi-factorial thinking.  More on this on my next post.

– Victoria Ferro

Exponential Medicine 2014 is Streaming Live in UStream!

One of the most important things that Will Weisman, Executive Director of Conferences at Singularity University mentioned at his talk earlier is that for the very first time, Exponential Medicine is livestreaming to the public for FREE!  This is knowledge worth its weight in gold and I can’t recommend highly enough that you take the time to view the live stream, which previously was only available to participants at what many consider prohibitive prices.

Here’s are a couple of links to the live stream!  If I were you, I’d try to move my schedule in order to view it in its entirety if possible.

http://www.ustream.tv/channel/rn012481632

or

http://www.exponentialmedicine.com/live

I didn’t actually know that there was a livestream previously, otherwise I would not have planned on doing a liveblog, because a livestream basically defeats the purpose of a liveblog!  For this reason and others that I will explain in my next piece, I’m changing my coverage plans.  My next post will explain how I am shifting the way I will do my coverage that hopefully will provide the greatest value to the unpatient community and the community at large.

Specialized Physical Therapy for Cancer Patients Can Mitigate Up to 99% of Post Treatment Issues

by Victoria Ferro

Many cancer patients come out of arduous treatments feeling a lot worse than before they got started.  Surgery, Chemotherapy, Radiation, Hormonal Treatment each carry with it a long list of side effects that includes some deterioration of physical functioning, not limited to neuropathy, fatigue, dizziness, weakness, among many others.  According to Sharon Leslie, P.T, DPT, who specializes in helping cancer patients and suvivors regain  physical functionality pre and post treatment, physical therapy that is informed by a deep knowledge of oncology can mitigate up to 99% of these issues.    

As part of her talk at the recent Bay Area Cancer Connections Annual Conference entitled “Setting Expectations for Physical Recovery After Treatment” Ms. Leslie drew upon her many years of experience to help conference attendees understand the process of recovery for specific issues that challenge breast and ovarian cancer patients and survivors.  She says it is particularly important for patients who are complex cases, with multiple surgeries for example, to not try to recover by going directly to the gym and working out normally post treatment.  It would be important for patients whose medical histories and conditions are more complex to consult and work with an oncology physical therapist, so that recovery can be handled with safety, and proper timing.  Ms. Leslie says that the goal of Oncology Physical Therapy (OPT) is to release the former patient to full functionality so that he or she may do everything she used to be able to do, perhaps even more and fully engage themselves with the world that way with no obstacle.  She says that in this regard the benefits of OPT are not just physical, but psychological and emotional.  

It is interesting to note that not every Center for Excellence in the treatment of cancer in the US offers oncology physical therapy, not even Stanford Hospitals, which has a very evolved set of supportive services for cancer patients.  In my experience as a patient there, not one member of my care team present or past has mentioned OPT as an option.  After speaking with Ms. Leslie, it is clear that OPT is something I direly need as my case is complex.  Ms. Leslie and other OPT practitioners offers services to cancer patients and survivors from their offices at the Palo Alto Medical Foundation.

Bay Area Cancer Connections Annual Conference Tackles Ovarian Cancer

by Victoria Ferro

For the first time in its history, The Bay Area Cancer Connections Foundation (formerly Breast Cancer Connections) tackled the challenges of ovarian cancer sufferers in the BCC 2014 Annual Conference held last November 1st at the Oracle Parkway in Redwood City.  

The featured patient keynote speaker, Katya Lezin, notably is an ovarian cancer survivor.  She is the author of the book “But I Just Grew Out My Bangs” a memoir of her journey through ovarian cancer treatment.  Before writing the book, she wrote a regular weekly column about her experiences going through treatment in the local paper in Charlotte, North Carolina where she resides with her husband and three children.  Ms. Lezin also connected well with the breast cancer community in the audience because she elected to have a prophylactic double mastectomy with reconstruction, a major 14 hours operation, after he was found to have the BRCA1 gene shortly after her ovarian cancer diagnosis.

She told one story after another with humor and great energy, most of the time looking for the “funny” even in the most dire situations.  She admitted however there are times when finding the funny was inappropriate or impossible.  A true creative, Ms. Lezin entertained the mostly female audience with songs she herself composed that were performed by her two teenage daughters through video.  One song lamented how so much public attention was given to breast cancer and not as much to other kinds of cancer, such as ovarian cancer, which also “kills”, according to Lezin.  Another song was about how her daughters are happy to know that they may be at risk with the BRCA1 gene.  They say this way they are able to prepare and make decisions for their health no matter what the results are of their genetic testing.

Somehow Ms. Lezin and her husband were able to communicate and interact with their children about their mother’s health challenge in sa way that helped them to cope with humor and gratitude.  They are in fact thrilled that their own horizons are expanding even as their mother’s “celebrity” as epatient advocate continues to rise.

The Bay Area Cancer Connections (BCC) is also expanding its regular offerings within its brand new offices on El Camino Real in Palo Alto to include ovarian cancer sufferers.  Clearly the organization is maintaining a strong focus on serving the mostly female community struck with many variants of both cancers in the area.  Already they are introducing new programs that can benefit both groups, such as a workshop on expressive arts set for later this month.

 

The UnPatient Manifesto

by Victoria Ferro

 

I take full responsibility for my health care.

As long as I am able, I lead the charge towards my own health, life and vitality.  I define what that means for me.

I welcome suggestions, recommendations, requests and pleas but I always have the final say.

I pursue knowledge and understanding on my health challenge.  

I ask the tough questions.  I do not leave a stone unturned.

I do not think of myself as a patient. I do not think of myself as sick.  I think of myself as powerful.

I can learn any concept the doctor or scientist knows.  I will not be in the dark about any aspect of my own body.

I will seek depth and breadth of understanding on any subject that factors into my recovery.

The doctor, health researcher and others in my care team are my peers in this process.

I actively seek out and put together a world class, rock star care team willing to collaborate with me on my terms.

I do not take religious sides in the debate between Western and Natural Medicine.

I only care about solutions that work and will help me towards long term health and the highest quality of life.

I do my own due diligence.  I find resources and creative solutions.

I apply proven decision science principles together with my own intuition to come up with optimal treatment choices.

I do not allow statistics to define my expectations nor my outcomes.

I do not allow even a hint of fear to enter my personal space.

I choose to practice faith, diligence and courage.

I leverage all the advantages of this present age.

I engage with enterprise, the arts, culture, politics, science and technology.

If I cannot find solutions, I take steps to create them.

I take massive action on my own behalf.

As long as I have breath, I do not give up.

I am the UnPatient.