01 Feb The Power of Experience
Post Written by Eugene Borukhovich
When I started the New York Healthcare Technology Meetup (aka Health 2.0 NYC Chapter) in 2008, I honestly had no idea what it would become, or the impact it would make on the individuals in the group. Whether they were a young techie geek or a seasoned physician, everyone has contributed so much to improving how we interact with “the system”. Since then, I have not looked back and this experience has brought me together with the most passionate, brilliant, transformative global community of people I’ve ever known who are fighting hard to truly transform healthcare to just “health.”
Since the journey began, I have written many blogs, tweeted over 24,000 tweets, spoke or moderated at many healthcare conferences, became an advocate of opening up healthcare data, and hopefully have made an impact on some lives along the way.
I am inspired and grateful to be in the passionate circles of Regina Holliday who is expressing her own frustrations about the healthcare system after losing her husband, through her creative project the #WalkingGallery, and Gilles Frydman, who created Acor.org, a platform for cancer patients around the world to find solutions outside of the existing system. Along with countless other examples of amazing individuals and entrepreneurs who are GSD (getting shit done)!
None of their stories, none of the experiences, none of my own blogs or tweets could prepare our family for that day in July of 2014, when my lovely, beautiful, smart, and mentally strong wife got that dreaded call from our GP that indeed there were at least 2 tumors in her left breast.
It began a few weeks before, when Marina woke up in the middle of the night and felt something odd in her breast. Immediately, she went for a mammogram which came back within days with “fibroadinoma” — our exact thought was “phew! we can deal with that!” We followed our GP’s advice to go do a biopsy, then we left for what was supposed to be our awesome family holiday in Sicily.
The nights after the initial biopsy when we were waiting for the report were anything but relaxing. The call regarding the biopsy report came on July 15th, just a few days after our arrival for holiday. My cup is always half full, so I pretty much ignored Marina’s concerns and continued to stay positive pretending nothing is going on inside Marina’s body AND mind. But, there was something growing in Marina’s body…..the tumors were malignant.
The GP immediately made a “referral” to Antoni van Leeuwenhoek Cancer Institute and, while the recommendation was to come home for further tests, the GP also said that another week would really not do any additional harm and try to relax. Yeah right!!!
As a supportive husband, I should have gotten on the phone right away to try to change our flights back, but having never experienced such a rush of fear in my life, I made a conscious (and wrong) choice to tell Marina to fly back at the originally planned date. What a fool! What a moron! How heartless! Only now can I understand how idiotic that was. My goal was to stay positive as a reaction to fear. We came back that week with a packed schedule that took us through the craziest roller coaster ride we have ever experienced in our lives.
Our initial reaction, following the model of Malcolm Gladwell‘s book “Blink: The Power of Thinking Without Thinking,” was to fly to the NY/NJ area where we have Sloan and other great institutions. But, based on many conversations we had with our friends in the Netherlands, we made a great choice to stay home. In the words of Lucien Engelen, who cinched the decision for us, “We ARE really great at care here in the Netherlands, we just don’t know how to market it like the Americans.” Indeed, the care, the process, the staff were absolutely fantastic and superb.
My two girls were initially scared beyond belief, but as the time went on they would come home after school and simply ask: “How was your chemo mom?” Really? Is that what a 12 & 10 year old have to adjust to? Our answer was “yes.”
It’s these strong, beautiful girls, and an iPhone background that reads, “Put up a fucking fight for what you love!” that got Marina out of bed each day. Fast forward: thanks to the great care at AvL and the support system of family and friends, Marina is now cancer free for over a year! Looking and feeling the best she ever has! And, energized to help fight this disease as always…..in style!
Love you M!