As we celebrated the success of Sea to Sea for MBC in Santa Monica at the wonderful event carefully orchestrated by Lori Marx-Rubiner and Ashley Powell, I was approached by number people who asked: “How long have you been making these trips? “You DROVE (didn’t fly) the whole way?” “Will you be coming my way on next year’s tour?” And I thought: “If they only knew what went into this trip!” That’s when it occurred to me that the story should be out there.
In a sense, Sea to Sea to MBC began in the late fall of 2010 when I received word that a young couple was looking for a metastatic breast cancer support program. I recognized their names. I’d first met them in 2007 when the young wife had her initial breast cancer. I was already metastatic and volunteering at the local hospital where I worked with newly diagnosed breast cancer patients. It was in that capacity that we met. The young wife went through the standard treatment and their lives returned to normal.
With no sign of recurrence, in 2010 the couple went ahead with their plan to start a family. The young woman immediately became pregnant. They were overjoyed. But 34 weeks into her pregnancy, after excessive back pain, tests were run. They showed her original breast cancer had metastasized to her liver, lungs, ribs, spine and hips. By December it was found in her brain. Everything possible was done, but the mother died. It was the spring of 2011. The mother was 30 years old. Her son was only nine months old.
As is the custom of our local support program in Annapolis MD, we had remained in contact with the widower and when he came to the METAvivor Holiday Party in Annapolis in 2012, he broached the idea of running across the US to increase awareness of METAvivor and MBC, and to raise money for the METAvivor research fund. After serious discussions, we decided to move forward with the project, thinking it would be a wonderful opportunity to meet with our researchers along the way.
At the time we had only six grant recipients. They were located at City of Hope CA, University of Colorado, Kansas University Medical Center, Cleveland Clinic and Penn State. The only one we would not be able to visit was at Huntsman in Utah -- it was just a bit too far north. (Our researcher at Huntsman, Alana Welm, later moved to Oklahoma Medical Research Foundation.) The plan was to begin during the winter of 2014, ending in New York City on Father’s Day.
The trip, which was originally planned for a period of three months, was to begin in California in late winter so that our runner could be back on the east coast for Father’s Day. We thought the Father’s Day connection was most fitting. But as we continued planning, we realized we hadn’t calculated enough time. The runner would have to begin early February. That meant snow in the Sierras, Rockies and the plains. The runner assured us that would work well for him. By now our team lead had left and our committee numbers had dropped, but we forged ahead. We began calculating what the runner would need in snow country, how that might hamper our timing and what we would do if at times it was too cold or too difficult to run. Then we worried about injuries … what if he couldn’t run at all? What if we could not move forward for several days? The research visits had to be locked in well in advance. Should we take a camper so that we could sleep and cook on the road? There was also the young son to consider. It was determined he would live with his grandmother but the two would fly back to meet us every two to three weeks, staying a few days before returning home. Then came an abrupt change. The runner took a new job and had to cancel his involvement.
We discussed what to do. Frankly, I was about ready to give it up. But ever loyal team member DeWayne Wilcher insisted this could still be done. We explored various options. Relay teams of running clubs or perhaps bicycle clubs. Or perhaps merely simultaneous runs and events throughout the US at the same time. The list lengthened. In the meantime, we awarded four new grants and thus had four new research locations to accommodate – MD Anderson (Houston), University of Michigan (Ann Arbor), Oklahoma Medical Research Foundation (Oklahoma City) and University of Alabama (at Birmingham). These took us much further north and south than originally planned. And finally we realized that the solution was simple … we’d send a small team in a vehicle. Plans quickly solidified.
Aaron Price, husband of long-time supporter Doris Ann Price, was volunteered by Doris Ann to take over the lead -- he’s been perfect! Now we needed sponsors. Our top donor, AstraZeneca, was the first to respond. Eisai, Novartis and MacroGenics quickly followed and we were on our way! As time went on, Genentech, Celgene, BioMarin and Lilly Oncology followed suit.
In the meantime we were busy locking in the research organizations. We had to take ASCO, the AACR and the Metastasis Research Society meetings into account. Not only is attendance at these meeting critical for many of the researchers that we fund, but they have massive preparation prior to these meetings for the simple reason that those researchers doing work relevant enough to receive a METAvivor grant, are also having success and publishing … YEAH! This means that they are presenting at major conferences. With the help of Danny Welch, PhD, our Chief Scientific Advisor, it was decided that the ideal time to start was between the AACR and ASCO meetings. The schedule was set.
Now we needed to lock in the research centers. Weekends were out. Mondays and Fridays were often unavailable at these centers due to meetings and other obligations. This left us largely with Tuesdays through Thursdays. We began locking in the dates … one by one … in order … across the nation. Next we began locking in sponsors. We did not yet have enough sponsors to fund the trip, but we were confident more would step up to the plate … and they did!
Here I must briefly digress to give a standing ovation to each and every one of our sponsors. Each gave what it could … and each and every one made this trip possible. Without them it would not have happened. Many may not realize what it means to put 100% of every donation into our research grants. We made this pledge to our donors when we incorporated in 2009 and although it has meant many sacrifices, we have kept that promise. In the early years, virtually every single thing we did was out of pocket – from supplies, posters, equipment, posters and displays … to travel … to fees to … exhibit tables… and more. Collectively our Board members/officers have easily spent $20,000 out of pocket over time. It is not that we haven’t had sponsors, we have. But there’s never been anywhere near enough funding and we’ve struggled financially. This time we put on by far the largest event that we have ever put on … and it was 100% covered by sponsorships. Eight sponsors all pitched in to make this possible. And we are incredibly grateful.
Then we looked to the days when we would not be at the research centers. We began looking for supporters and others to host awareness and fundraising campaigns. Ultimately we also added State Departments of Health as places to educate people on MBC and the need for far greater balance in the breast cancer field. Everyone worked hard to accommodate us. Colleagues, donors and supporters along our route met with us, some putting on events … and in the end we had almost every single day filled with activities. It was very, very busy, but incredibly rewarding journey!
Then suddenly we were at its end. I was deeply moved by the incredibly poignant and powerful speech given by 34-year-old Jennie Grimes, who was robbed of her fertility by our disease and is now facing the reality that there are few drugs left that might keep her alive. It was certainly not an easy story to tell but Jennie did it with great courage, deep honesty and tremendous strength. And as I listened to her, I could not help but think of how the whole concept of Sea to Sea for MBC began. It began because of another young woman, who had kept her fertility and had a child, but only nine months later was taken from him by her cancer.
This is a tragic disease. It is not an older person’s disease as many would have us think. It strikes at all ages but in the young it is even more vicious and aggressive. THIS MUST STOP. And METAvivor was founded to make it stop. We will never stop the fight against this disease until it ceases to take life. We will not stop until those with the disease are able to enjoy long, full, productive lives aided by drugs that do not cause life-altering side effects and do prevent death from occurring. This is possible. This must happen. And METAvivor will continue its fight until this has occurred.
