This year has sucked. A lot. Here I am dying, getting radiation treatment on my bran that makes me unable to taste salt and also makes me fatigued, living with pneumonia and whatever the hell is on with my lungs, and tomorrow I get to have a PET scan. Oh, and did I mention I’m having more HLA platelets twice a week? Fun times. The only good news right now is that at the moment, my cognition seems to be a bit better than when I first had my brain bleed last month. I’m OK at writing, but speaking is hard, as is processing questions. I have to ask people to repeat their questions a lot because I have to think hard about what the question is, and focus hard to be able to answer.
But that’s not really what’s important. What’s important is what’s happened to the MBC community this year. I can’t get over the people we’ve lost. Beth Calabotta, Mandi Hudson, Champagne Joy, Kelly CB…so many others. They’re dead. They’re gone. How do we live without them? Why couldn’t science do better by them? Why isn’t there research that might have saved them?
I feel like MBC Day this year, October 13, is a little different in the past. We’re seeing more groups that aren’t doing as much pink crap as in the past, and groups that are talking about MBC and not just how “great” awareness is. But we’re also seeing the government is doing pretty much what it always does: spending way more on early stage research than on metastasis. And all the legislative changes we advocate for, like oral chemo parity and access to Medicare for patients with terminal cancer, are going nowhere.
So, off we go to Capitol Hill we go, to try to convince them to listen to us. We lay on the ground and we remember the people who have died, and we talk about what we need our government to do for us, and we go to their offices and beg them to help save our lives. And what makes me angry is that they don’t. They don’t do shit for us. I mean it, THEY DON’T DO SHIT FOR US. They have all sorts of platitudes for us, but that’s all they are, platitudes.
When you go to the Stage IV Stampede this year on October 13, and you go lobbying, I want you to remember that Congress owes us their hard work. They owe us their help. And when they give us nothing at your lobbying meetings, remember that we’re going to have to ratchet things up from here on out. Don’t be afraid to speak the truth to them—because, we’re dying. And more of us will die unless they help save our lives. Be brave, and mighty forces will come to your aid.
I’m proud of all of you advocates who will be in DC. I wish I could be there with you, but I know that you will do amazing things this week. My heart will be with you in DC.