Grief and Moonshots

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 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.

Image from 1902 film “A Trip to the Moon”

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.

This entry was written by Kathi, posted on Wednesday, January 13, 2016 at 03:01 pm, filed under Life & Mortality, Metastastatic Breast Cancer, Research and tagged , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

7 Responses to “Grief and Moonshots”

  1. Hi Kathi,
    Lots of us are walking around with pretty battered hearts these days. I have lost count of how many cyber friends have been stolen from me, too, by this wretched disease. I have a feeling you knew many, if not most, of them as well. Sometimes it is hard to know what to do. It can seem like no one is listening and that no one ever will. It can seem like we are making no progress, but I think we are, albeit slow. I am feeling encouraged and slightly optimistic about the Moonshot program. Sure, I’m skeptical, too, but I am hopeful as well. I have to be. Thank you for sharing your thoughts on what to do with grief and also for sharing these links. I did leave a comment on the Vice President’s Moonshot post. The more comments the better I figure. Sending you big hugs. I know your heart aches, as does mine. Much love to you, my friend. xo

  2. Thanks, Nancy. I’m hopeful, too, although I know there are no quick or easy solutions. But Joe Biden is one of the good guys and he gets it. xo

  3. Hi Kathi, I feel as if we’ve been here before, probably because we have. Hard to forget you and I actually met at a funeral for a fearless friend. Some time has passed since then, but it’s not getting easier. I’m sorry you’ve lost such close friends, but I’m seeing a new trend in the blogosphere since re-entering. A lot more anger than before. It seems a greater number of people are finally understanding and demanding things change for the MBC community. We’ve definitely got a long way to go, but maybe there’s real hope coming. I don’t know when, but I hope we can live to see it. I really want to believe that. Hugs to you, my friend.

  4. Thank, Stacey. I’m glad we got to hug in person, and I’m sending back a cyber hug now. I am hopeful of this Moonshot initiative, because of the people who have already spoken with Joe Biden, who are committed to bring the perspective of patients and patient advocates into the projects being discussed. That represents a huge and important shift. xoxo, Kathi

  5. […] seems like every week, we lose another precious life to metastatic breast cancer.  Deb, Mandi, Kathi , Grazia and Susanne pay tribute to Holley […]

  6. Kathi, yes, Holley Kitchen’s story and video were unbelievably raw. I’m glad public attention was geared toward metastatic breast cancer for a change.

  7. Fingers crossed, Beth. It’s very cool that the MBC Project is getting priority attention from the moonshot group.

Leave a Reply