One Patient’s Transformation Leads to a New Mission—Crowdfunding for Research

One Patient’s Transformation Leads to a New Mission—Crowdfunding for Research

Don S. Dizon, MD, FACP, FASCO

Feb 20, 2014

As an oncologist, I have always been amazed by how some (if not most) of my patients evolve from the shock and terror that accompanies a new diagnosis to a new sense of self, of purpose, and a better appreciation of life. 

I recall one patient in particular, whom I once treated for breast cancer; let's call her Jane. When we met she was in her early forties and already a successful attorney. At our first meeting, she had come with her mother and was deliberate, almost formal. I remembered how stoic she was as we discussed her diagnosis--the histology of her breast cancer, and that it had involved the axillary nodes. She engaged in conversation, asked thoughtful questions, and took a lot of notes. I also recall the change in her demeanor as we talked about treatment and my recommendation that she undergo adjuvant chemotherapy. She cried then, and I remember being taken aback by how emotional she became, how she turned to her mom, and told her, “Mom, I think I’m going to die of this.” It was as if my recommendation that she undergo chemotherapy was the most brutal symbol of just how serious her diagnosis was, and that threat to her mortality hit her like a ton of bricks.

Ultimately, she initiated a course of chemotherapy, completed it without dose delays or reductions required, and then initiated endocrine treatment. After she had been on endocrine therapy for a year, we talked about that first meeting, about what it was like. She recalled the fear, the near-certain threat to her life, and her inability to cope. She also recalled her anger at having to face cancer at such a young age and that somehow, it turned into a determination to complete treatment. 

For Jane, cancer gave rise to her new and stronger will to live—and to live well. Like a phoenix rising from the ashes, she had discovered her strength and looked at her life differently. While her job remained important, it no longer defined her. She made less sacrifices for her career and took vacations, making plans to see the world. She no longer put off travel and no longer subscribed to the notion that “there will be time for that later”. "No time like the present" became her new motto, and most notably, she learned she could persevere despite what this world threw at her.

Such transformations abound after cancer. Recently, I was privileged enough to meet Molly Lindquist (@ConsanoMolly) and Scott Finkelstein (@ConsanoScott). They are the founders of Consano, a crowdsourcing site that aims to provide the public with access to information about projects that might personally interest them, so that they donate to medical research in a much more personal fashion. 

I first met Scott and Molly via social media (Twitter more precisely). I have gotten to know them through our online interactions and the more I’ve learned about them, the more I have been touched by their journey toward their own transformation; it is one I find amazing and inspiring. I asked them to share their own story, their journey, and here is what Molly had to say.

After past jobs in finance, I was spending some time at home with my two little girls, enjoying motherhood (most of the time . . . no job is perfect, after all). Scott had completed a rigorous residency program at the University of California at San Francisco, and we had settled in Portland, where he practiced anesthesia at a Level 1 Trauma Center. We were enjoying the chaos that comes with raising a three- and five-year-old. Life was sweet.

I still remember it—October 11, 2011. I was only 32 when I found a lump in my breast. Although I had some family history, I was definitely operating under the assumption that “it was probably nothing.” So much so, that I didn’t even consider asking Scott to come with me to get it checked out. The breast imaging center was in the basement of the hospital, where I had no cell service. So, when the ultrasound came back abnormal, and I was immediately taken for a mammogram, I resorted to sending Scott an email.

              “Might need a biopsy—saw a nodule on ultrasound” – Molly

              “Thanks for the update; fingers crossed here. So glad you decided to go in today. You hanging in there? Love you, S.” – Scott

              “Just had a biopsy. Waiting on one more mammogram, but radiologist is concerned”—Molly

              “I’m going to try to get someone to relieve me. Are you okay?” – Scott

Our lives were turned upside down. The next several months were spent making it through surgeries, starting chemotherapy, losing hair, filling expanders, and learning to cope with life after cancer (AC). AC, the new way in which our life is split. Living with the fear that comes with cancer and the lack of control that it brought to our lives, remains one of the things we are most angry about. For a couple of Type A personalities, lack of control just about drives us over the edge. But life moves forward. The three- and five-year-old girls that we hugged so tightly after my diagnosis are now five and seven. The hair that was gone has grown back (even better than before—bonus!). The scars across my chest continue to fade as time passes, or maybe they have just become less shocking each time I see them. But the fear doesn’t go away. The control doesn’t come back.

Scott and I wanted to prevent our girls from walking this same path. We felt that supporting medical research would be the most effective way to make a difference, and we began to explore ways to do this. We could donate to a large organization, cede control of our funds and trust that they could make decisions on how best our donations would be invested. Alternatively, we could have done our own research, evaluating the ongoing projects at academic institutions across the country, and then find a way to make a directed donation to a specific investigator whose project we felt passionate about. Although our donation would be relatively modest (let’s just say that there would be no Lindquist-Finkelstein building as a result of our donation, although the Finkelquist Center of Excellence certainly has a nice ring to it), we still wanted to make a difference and have some visibility to the impact of our donation. We were looking for a way to increase transparency, easily direct our donation, and an ongoing connection to the research. As we started to talk with others, it became apparent we were not alone in wanting these things. And in our quest to change the future for our girls, we found a way to bring control back into our lives.

Suddenly our cancer journey took a new turn. We knew we couldn’t change the molecular make-up of my cells and go back in time to our life BC (Before Cancer), but we could hopefully help make things better for future patients, for people living with chronic disease, for our daughters. Much as Dr. Dizon describes the phoenix rising from the ashes, our desire to make a difference culminated in the creation of Consano, giving our lives new meaning.

Consano, which means “to heal” in Latin, brings crowdfunding to medical research. We provide an easy way for researchers to share their work with the public and connect with those people most interested in supporting what they are doing, people like us. Given the current funding climate, great researchers spend far too much time looking for ways to fund important and innovative projects. Traditional funding mechanisms uncouple research from those people most impacted by it. Consano fosters this much needed connection enabling researchers and those touched by illness (which is really all of us in some way) to work together to advance medical progress. Creating Consano was our attempt to pay forward the kindness we received during the worst period of our lives. And as we continue to meet people whose lives have been turned upside down by health issues, the fire only grows stronger.

I was lucky in so many ways during my cancer journey: I had health insurance, a dedicated support system to help, a husband who embraced me rather than turned away, two daughters who gave me the motivation to move forward on my darkest days.

“I may not have gone where I intended to go, but I think I have ended up where I needed to be.” Douglas Adam’s words couldn’t ring more true for Scott and me. Where did we see ourselves on the eve of our tenth wedding anniversary? Certainly not running a crowdfunding platform for medical research! But in finding this professional passion out of our personal journey, I know we are right where we need to be. And if my best friend, “No Evidence of Disease” (or Ned, as I like to call “him”), stays by my side, I can only hope that we will be here for many years to come.

For more information on Consano and to view the projects currently available, visit their website, I’d also urge all to take a look at all the great work ASCO does every day for its members, our Society, and our future through the Conquer Cancer Foundation (CCF) - both are exceptionally amazing causes, among so many in our field.

For me, Molly and Scott’s story, and my memories of patients like Jane motivate me to remain in academic oncology, to join the quest for better. I look forward to the time we achieve the vision of the CCF to “conquer this disease by funding breakthrough cancer research and sharing cutting-edge knowledge with patients and physicians worldwide, by improving quality of and access to care, and by enhancing quality of life for all who are touched with cancer.”



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