So what's my excuse for being away for so long?
Well, there was the whole issue of teaching international law to actual students, which meant reading and dissecting case law and contextual background and news (SO MUCH NEWS) enough to be able to explain the materials in a mostly coherent way twice a week for the spring semester. That is done now
Side note: Don't get me started on funding for science. I will point to the fact that it was
But what I'm most angry about this spring is the four vibrant, beautiful, young friends I've lost to metastatic breast cancer in the last couple of months, and how the issue of cancer death is only going to be exacerbated by this White House's policies toward healthcare and science (not to mention its general disdain for women).
In a super emotional state
It is awful.
I look at Mandi's last post from the beach, or the posthumous entry by her husband (grab your tissues), and I hate that she didn't have more options. Breast cancer got into her spinal fluid and there was basically nothing left her doctors could do, even though they tried a number of drug combinations. I think of how she counseled ME through the uncertainties that arose with my diagnosis change last spring, before I'd told anyone else in the community, how she assured me even as she faced pain and drug failure after drug failure.
I look at Anna's beautiful video,
which I can hardly watch past the point where it shows her artwork that says, "but I have two small children" (5:02). But you should watch it. Watch as these women joke about setting up a dating profile for Anna's husband, or writing a letter, "to the future mother of your children." Too many children are losing their mothers. I remember my conversations with Anna about how hard it was to parent with metastatic cancer, but we just did our best to appreciate every exhausted moment, even when we felt like shit because of treatment. I remember how she walked me back from crazy-town when I thought a terrible headache meant brain mets. She had brain mets, and that wasn't what hers felt like, she promised.
I look at Louise's obituary, and think - she was only 42, which sounds at once so young and also so very old in the mets community I know, where most women are in their thirties and praying to see forty. Weez, as she was known, lived with mets for more than seven years. When she was still on Facebook, she cheered whenever I posted a "no evidence of disease" status.
I look at the tributes to Beth, and remember how we laughed at sharing the same birthday. I wasn't as close to her as some other women were, but I had so much respect for her calming, steadfast presence in the world of MBC advocacy. That's the thing about MBC advocates, though -- eventually, most of them die of the disease they're trying to end.
*****
In March, I went to Oakland to attend my FIRST Young Survival Coalition Summit. I'm part of YSC's 2017 class of RISE Advocates, which I'll write more about later, assuming I can find my focus this summer. I hadn't made it to a YSC Summit in the past because they always coincided with Quinn's birthday, which I wasn't willing to miss. This year, the summit was a weekend later, so I went. There is nothing quite like finally being able to hug a friend in person after knowing them online for years. But I realized I am still very much straddling two worlds, or trying to find my way in one as I no longer quite fit in another. I'm part of the "survivor" crowd now, though I don't know if I'll ever be comfortable calling myself that. I got a lanyard colored to indicate more than five years since my diagnosis. I did not get a metastatic-colored lanyard. But the majority of my friends fall into that group. They're the ones I joined for dinner.
Eight of the ten women in this photo live with metastatic breast cancer. Can you tell who? They are my tribe, even as I am no longer one of them. And even if it's not always through blogging, I will keep doing my part to be a voice for them.
Want to help? Please raise your voice to talk to your Senators over the next few days and weeks, to tell them to reject the terrible House legislation that would allow states to end protections for those of us with pre-existing conditions. How? I have my Senators' local and DC office phone numbers programmed into my phone. I call them regularly. I am polite, but make sure I relay my point. I don't always know if it's effective, so I also make a point to send the occasional letter. There are apps who will reach out for you, too. Whatever method you choose, please just get involved. My friends' lives are on the line, and I'm really tired of being angry.
