If you have any friends in the breast cancer cyber-community, it cannot have escaped your notice that we have lost too many of them lately. One of the latest is Holley Kitchen. She posted a simple but eloquent homemade video on YouTube on June 4, 2015. Like a lightning bolt, it shot some much-needed clarity into the public consciousness about the reality of metastatic breast cancer. As of August, 2015, when Holley spoke at a meeting of the American Cancer Society, she estimated that her video had been viewed by 50 million people. If you haven’t seen it or want to see it again, here it is. I don’t know about anyone else, but it still makes me weep.
Yesterday, it was announced on Holley’s Facebook page that she had died. She was, sadly, only one of several folks I’ve known or known about who have died of metastatic breast cancer in recent months. 2015 was a tough year, and 2016 hasn’t started out any better. Every week, it seems, I will see a birthday notice on my Facebook timeline about a friend who has died of metastatic breast cancer. Just today, Marie wrote about this heart-stopping experience on her blog. When I tell you that I have lost count of how many times this has happened to me, it is not because I’m a thoughtless, forgetful git. It’s because too many people I know have died of or are living with metastatic cancer.
“Don’t mind if I fall apart. There’s more room in a broken heart.” ~ Carly Simon
In May of 2015, US Vice President Joe Biden lost his son to brain cancer. Last night, during his State of the Union address, President Obama announced a plan to intensify research into cancer. Calling it a ‘moonshot,’ he said that VP Biden would head up this initiative. Recognizing that cancer is not one disease, but many, the Washington Post reports that this project will in fact be comprised of many initiatives, some already underway. Indeed, many cancer research advocates have already met with Joe Biden’s staff, including Dr. Wagle of the MBCProject. Biden himself has set up a page for the Cancer Moonshot, outlining his plan and inviting comments.
While many in and around Congress have stated that cancer research is one subject about which there is true bipartisanship, forgive me if I’m feeling skeptical. In the past few years, Congressional wrangling about the budget has resulted in funding cuts that have affected the National Institutes of Health, curtailed opportunities for newly-minted post-doc candidates, even forcing some of them to consider a different career path, and forced the National Cancer Institute to change how it organizes clinical trials. And we’ve all heard ad nauseam about Congress cutting off funding to Planned Parenthood, which would have gone not to abortion services, but to other health services like cancer screenings. Meanwhile, several legislators, like Ted Cruz of Texas, who are science deniers, serve on and even head up important committees that have oversight for scientific research.
Despite all that, or because of it, if you feel inclined to do some lobbying or letter-writing, good luck figuring out who to contact. I just visited the Congress.gov page that lists all the House and Senate committees, did a little searching about ‘health research’ and ‘cancer research,’ roamed around the Appropriations committees of both houses, as well as a few other likely suspects, and groaned. There are few straight paths through the labyrinth of committees and subcommittees to the people who actually decide who funds what. Back in October, 2015, Beth Caldwell zeroed in on the Senate’s Health, Education, Labor and Pensions Committee, then working on legislation about cancer research. She met with staffers, and posted a call for action to contact legislators about improving research and statistical tracking for metastatic breast cancer.
I can’t say if any of this soothes my battered heart. Honestly, I’m still catching my breath after Carolyn’s recent death. Her birthday was this past Sunday, when her family held a memorial gathering for her. I couldn’t be there, but I did send METAvivor a contribution in her memory. No matter what I do, I think I’ve shed some tears every day, for her and for others, during the past month. Sometimes, doing something, anything, can mitigate the helpless rage that often follows grief. Sometimes not. At the moment, the person at the center of potential legislative and funding action seems to be Joe Biden himself. Maybe tweeting him, commenting on his Moonshot Page, or at least keeping up with him on his official page won’t bring back Carolyn or Holley or anyone else, but I’d like to hope that eventually it will spare someone a little future heartache.
In the meantime, I put one foot in front of the other, a little numb, a lot sad, and try to remember to tell my friends that I love them.