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From Dying to Living: My UnPatient Story

From Dying to Living:  My UnPatient Story

(with comments on my Love/Hate Relationship with Technology)

 

By Victoria V. Ferro

Delivered 9/16/2018 onstage at Patients 2.0 at the Santa Clara Convention Center


Thank you very much for this opportunity to speak to a group I honor deeply.  In this room are some of the most powerful, creative and caring people in the planet.  You are brave pioneers, advocates and builders pushing for fresh solutions to otherwise intractable problems.  I admire you and I salute you. I’m honored to share with you my patient story:

It was about the time of the Internet Bubble, at the turn of the century, I frequented the Pinnacle Health Club in Manila, weight training at their gym 2-3x/week.  I enjoyed working out. The heavier the weights, the better. In my mid-30s, I was strong and fit. The club was a quick drive from the Philippine offices of a SouthEast Asian media conglomerate where I worked as the founder and managing director of its interactive media subsidiary.  I loved the job but it was at times terribly stressful, and I needed to exercise to decompress.

I also occasionally treated myself to the Pinnacle Spa’s combination shiatsu/swedish massage that felt so good after a rough day and a tough workout.  It was in one of those sessions, lights dimmed and zen music playing, lying face down on the massage table, my chest pressed to the firm surface, that I felt something was off.  This wasn’t the usual breast pain soreness that comes and goes with my female cycle, this is different. An insect bite gone bad, perhaps? No, the pain was not at the surface, but inside my breast.  It felt more like a mosquito/spider hybrid creature lodged itself deep inside my mammary glands, that somehow got electrocuted into an annoyingly hard organic structure, complaining when pressed. I remember wondering about the strange sensation, then waving it away in my mind, trying to relax.

Months passed and the little creature in my breast did not and would not go away.  A friend recommended I see a breast surgeon, a Filipina who trained at Stanford. I sought her out and met her.  She performed bilateral ultrasound on the spot. My left breast looked clear she said. But the lump on my right breast did look concerning and could be cancerous. Can she do a core needle biopsy, she asked.  Though I hated the idea, I agreed. That same hour, she stuck a long thick needle into my breast that suctioned out several tiny pieces out of the tumor.

The next day, not only was my entire breast sore, the lump within it grew to at least twice its previous size from what I could feel with my hands.  I was angry. That biopsy could not have been good for me. Nobody warned me that this would happen. What is going on?

A few days later, I sat down with the breast surgeon to talk about the biopsy pathology results.  She said the tumor contains a rare form of cancer called mucinous carcinoma. It is relatively slow growing compared to other kinds of invasive ductal carcinoma, she said.  But still it is cancer, and needs to be excised. She recommended a lumpectomy soonest. She would refer me to an oncologist, who could determine if chemotherapy was required.

I listened and said I would think about it.  But I had lost trust because of the way the biopsy was done.  I felt I was not given enough information on what to expect. I did not get a satisfactory explanation on the effects of the biopsy on my body.  I said no, I wouldn’t do the lumpectomy.

For two years I aggressively worked on getting rid of the lump through non-surgical integrative methods.  I met with two Integrative MDs and did most of their recommended protocols. I did feel better over all, and for a while the lump appeared to stay the same size.  Then one day, the lump which never regressed to its pre-biopsy size, grew from roughly 3cm to 8cm within a 3 week period. It was growing by 1.67 cm/week! Is this what you call slow growing?

One of my Integrative MDs, suggested I go to a cancer hospital in China, known for innovative minimally invasive techniques, to address the emergency situation.  I flew to Guangzhou China and there received transarterial chemotherapy embolization (TACE, otherwise known as localized chemo), immunotherapy, cryosurgery, and chinese herbal medicine all within a 7 week period.  The tumor was excised but I was in shock because of how the stitches looked. My beautiful right breast was now mangled and disfigured. They recommended more chemo. I refused.

For the next 6 years, I tried every naturopathic modality that seemed good, like turning 85% raw vegan, and painful korean oriental health therapies, as efforts towards prevention.  But in 2011, I felt a lump start to grow in the exact same spot where I had the cryosurgery and localized chemo, the exact position of the original tumor. By mid-2012, the lump had grown so big that it was the size of a small melon, a massive protrusion from my chest.  I called myself the Hunchfront of Laguna. I arranged scarves to cover the bump because by this time it was too obvious. One of my cancer buddies, Mimi, fondly called it ET, the baby alien in my chest.

In a serious effort to shrink the tumor, my integrative MD (yes he is an MD) suggested I do an supervised extended fast.  I agreed. And for 24 days, I took nothing but water and herbs. I also received daily B17 injections directly into the tumor and my glutes, and hyperbaric oxygen treatments. The giant tumor finally burst through my skin on Day 20 or so, at which point, globs of blood and matter started to exit from my chest.

Do you know the movie “The Blob”?  Well I had gallons of what seemed an unending supply of “The Blob” come out of me every day, at least a gallon a day for nearly a year.  That Blob is mucin or mucous and the supposed slow growing cancer is swimming around and distributed within it. The lump did flatten and shrink from 17cm to about 5cm, at least on the visible portion, as a result.  And as ugly as the wound was, I was glad for the diminished size of the thing that was not supposed to be there.

My integrative doctor was happy!  He said the fast was a success! He had never known a patient with as much discipline and determination, he said.  So I believed him and took the process as triumph. I celebrated!

Until about half a year later, the flattened tumor remains of my chest started to bloat again, eventually to a size even larger than before.  The opening through which the mucin pushed through had closed briefly but was now open again, with two new ruptures. So by late 2012, a full blown ET Monster spewed out blood and mucin from multiple places on my chest, and with more ferocity.  This time despite the exiting of matter, the tumour was not shrinking. My breast was constantly sore and became even more disfigured. I got used to the smell of blood.

Around that time, I was in the US for a business conference in San Francisco, when my aunt whom I was staying with, sat me down and seriously told me to seek medical help.  I was nonchalantly managing the constant bleeding and exiting of matter as if it wasn’t a big deal. My aunt, herself a successful Bay Area entrepreneur and by all accounts a formidable woman, looked me straight in the eye and said “Steve Jobs waited too long to get medical care, and just ate apples, see what happened to him.”  As a Steve Jobs fan who deeply mourned his death, I heard her words, and decided to take action

By the time I got all my diagnostics done at Stanford not long after, oncologists found what they considered an inoperable tumor on my chest plus a large tumor in my left lung.  PETCTScan images appeared to indicate that the tumor was already invading another lobe of my left lung, my trachea, and potentially even my spleen. Two oncologists told me that in my case there is no cure, and that the only thing they can do is palliation.  One oncologist told me I was dying.

I didn’t believe them and I didn’t give up.  Eventually I connected with Dr. George Sledge, Chief of Oncology at Stanford, who graciously took my case.  He did not make negative pronouncements. He just said he would do his best. And because I was and am convinced that Dr. Sledge is an exceptional physician, I decided to trust him.  It helped that we went to the same school, Tulane University, he for med school and I for business school. Mutual respect and the culture of honor infuse my conversations with Dr. Sledge.  We practice true shared decision making. Dr. Sledge provides medical intelligence and recommendations; I do my own research, ask questions, and make the final decision. We act on treatment choices agreed upon.

Under his supervision, I went through a fresh new set of chemo, radiation, a couple of different sets of hormonal therapies, and a couple of major surgeries, with more minor surgeries.  I also pursued supportive care classes at the cancer center, supportive oncology sessions with Dr. Kavitha Ramchandran, and classes on mind-body medicine taught by Dr. Eva Weinlander, all within the Stanford system.

By September 2015, scans showed I was N.E.D.  The chemo actually closed up the wounds and dried them up completely.  Chemo was my best friend this time. And following the successful excision of the previously inoperable tumor, which required breast surgeon Fredrick Dirbas to scrape my skeletal muscle (yes it was that deep), Baby ET is no longer in my planet.  The unending supply of the Blob got beamed out of the galaxy along with him.

Dr. Sledge told me recently that I am a wonder.  That he didn’t think I would live past the winter of 2014.  He also said these words and I will never forget it: “ You are the reason we don’t give up on our patients.”

Three years later, my scans still show N.E.D.   I am deeply grateful to Dr. Sledge, Dr. Ramchandran, and my entire care team at Stanford, as well as my dearest family and friends for their support in getting me to this point.  I celebrate every nanosecond of life I get to breathe, each one a gift. Indeed, The last 15 years of countless crisis points and the equal number of solutions that got me from dying to living gave me an education not available in any university or program.   And I felt compelled to give back.

On Giving Back

In this regard, I started The Unpatient Revolution.  The UnPatient Revolution is a movement of passionate individuals who have chosen to take the lead in their own health care.  UnPatients seek to be educated thoroughly on the health challenges they face. We want our voices heard as critical consumers of health care services.  The UnPatient Revolution seeks to inform and awaken patients to what is possible in the battle for their best health through carefully curated and well crafted original content from the unpatient perspective.   UnPatients are committed to engage in discourse with one another and all other stakeholders of the health care community with a mind to industry disruption if that is what is necessary to move to needle to attain positive health outcomes.

I’ve also started Uncancer!  the Unpatient-led Movement to Reverse Advanced Cancer, an advocacy that seeks to serve what I feel is a vastly underserved community.  I am in the process of writing a play on the highlights of my cancer journey called “Romance and Revolution in C:  A Battle Tale”.  Last year an event that featured a staged reading of scenes from this play was produced at the Dragon Productions Theatre in Redwood City.  Special mention to Patient Champion Amy Li of Dance4Healing who collaborated with me on the event.

I’m interested in questions that affect all patients, such as how to create environments to optimize health, the matter of optimizing brain health and how that affects mental health as well as our entire physiology.

I am very grateful to Health 2.0 for highlighting the Social Determinants of Health or SDOH, for what used to be called “the Unmentionables”, or now, I suppose they are called “the Unacceptables”.  As a single woman, I have had to go through most of my cancer journey alone.  The pursuit of quality community then gains importance as optimal health practice.

I’m very interested in the redesign of health education, and how the new VR and display technologies can help patients and caregivers have better conversations with their physician/scientist care teams.

In graduate school at Tulane I studied decision science, and I feel convinced it was the principles of optimized choice in this field, combined with my economics background, that gave me a good framework on how to make health decisions.  It is this piece of the puzzle, which is critical to strategy for those of us where the stakes are highest, where I have crafted a framework that I believe can help patients get to their highest quality choices and consequently their best possible health outcomes.

I’m happy to announce that The Decision Education Foundation has granted me permission to adapt their excellent Decision Skills curriculum especially for Unpatients.

On the Patients 2.0 2018 Theme:  our Love/Hate Relationship with Technology

On the theme of Love/Hate Relationship towards Technology, I veer more towards love.  

I love how technology provides opportunity for patient/caregiver education not possible a decade ago.  I love how with technology, people who are not scientists or coders, with the right tools, can be makers and creators.  I love how technology can help to amplify people’s intelligence and contribution. I love how technology helps us to communicate.  

I hate how technology might help us to NOT communicate, face to face, that is. Which in my opinion, still the healthiest and best way to do it.  There is just no substitute for presence. 

I also hate the gap between technology that has already been developed versus the actual technology deployed in health systems.  I hate it that some technologies are created for providers but cut off from patients, and that includes data! I honestly think that this divide creates distrust among patients and providers which weakens the quality of our collaboration.  I am very grateful for events like these where we can meet face to face and build trust among one another.

Before I end, I’d just like to say thank you to the Society for Participatory Medicine for making my visit here possible.  Thank you to WEGO Health for giving patients a way to leverage what they already know to participate in this space.  Thank you especially to Health 2.0 and Patients 2.0 for consistently producing what I consider to be one of the most patient honoring events in the industry.  Thank you!


If you’re interested in participating with the work of the Uncancer Movement and the Unpatient Revolution, we invite you to be a monthly contributor to her projects under the umbrella of the project called “The Art of Victoria Valencia Ferro.”  Signing up for a monthly pledge through her fiscal sponsor, Fractured Atlas, would make all your donations/contributions tax deductible.  Please click here to learn more and to make your first donation.  Thank you!

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