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Lifestyle

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

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.

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.