The One Not There Next Year, redux

For those who missed it, my last post was about how treatment would be keeping me from going to the Living Beyond Breast Cancer Thriving Together conference this year, and how we never know who will be too sick/too broke/too dead to attend next year’s conference, and how we’re scared it’ll be us. I wrote about how a friend of mine had cried at last year’s conference and said “I’m the one who won’t be here next year,” and how, in the end, it was me who wouldn’t be there, and her who would be–she had made plans to travel there with her mom as her caregiver.

The best laid plans.

That friend was Mandi Hudson, of Darn Good Lemonade, and she died this week. 

I don’t have words. I didn’t realize it was possible to feel this empty.

And ironically, my platelets were too low for chemo last week, so my schedule is bumped by a week, making LBBC weekend a real possibility for me instead of a pipe dream. So, I booked myself a ticket and a hotel room, both refundable in case my body refuses to cooperate, and I’m planning to be there. If there is anything Mandi has taught me over the years, it’s to not let this disease steal more from us than absolutely necessary–to figure out a way to do the things that are important to us, even if they seem difficult. And seeing my friends, some of whom I’ll never see in person again, is important to me.

Lately I’ve been listening to the Hamilton soundtrack nonstop (The Girl loves The Schuyler Sisters) and the song Wait For It keeps running through my head. “Death doesn’t discriminate between the sinners and the saints, it takes and it takes and it takes, and we keep living anyway, we rise and we fall and we break and we make our mistakes…and if there’s a reason I’m still alive when so many have died, I’m willing to wait for it. I’m willing to wait for it.”

I’m still waiting for it. But I’m writing like I’m running out of time.

If you’re anywhere near Philadelphia on April 29, even if you can’t come for the LBBC conference, please come meet up with me and METUP for the third annual Philly die-in. You can find event details here

The One Not There Next Year

The annual Living Beyond Breast Cancer Thriving Together Conference, for people with metastatic breast cancer, is happening next month. The 2015 conference is where I met so many of my favorite metsters, and where the very first MBC Die-In happened. I met even more of my favorite metsters at the 2016 conference last year. It’s a fantastic event, life-changing really, and I highly recommend it. If it’s at all feasible for you to go, don’t think, just go!

I really want to be there this year. I keep trying to come up with ways to make it happen given my health situation–The Hubs said he could maybe come along so I have someone to push the wheelchair and haul the luggage and take me back to the room when I’m too tired to participate anymore. But the further I get into chemo, the more I realize it’s probably not feasible for me to fly all the way across the country and expect to be able to do anything other than lay in bed for 3 days.

Yesterday I went to see The Girl’s first dance recital–she’s in a class for preschoolers called Creative Ballet, and the show was ADORABLE–and had to spend the rest of the day laying down. The other time I’ve gotten out of the house since chemo? Thursday I spoke at a press conference on Trump’s #deathbudget and how the cuts to NIH will literally kill me. Both outings required my wheelchair because I couldn’t have walked as far as I would have needed to in order to participate. After Thursday, I spent the next 48 hours entirely in bed other than to pee. Both outings were COMPLETELY WORTH IT. If we don’t keep advocating for us, we’ll all die. If I wasn’t at The Girl’s dance recital, knowing the next one isn’t until next year…well, I never would have forgiven myself.

I think sometimes people don’t realize just how physically limited I am right now. When I say I’m not capable of flying across the country, I’m not looking for suggestions for how I might be able to go–I’ve thought up every idea there is already, believe me. I actually mean I’m not physically able to make the trip. (Hey LBBC: I so so so wish the mets conference was more centrally located instead of in Philly. A 3 hour flight I might be able to do. And it’d cost less too!) LBBC’s conference is right up there with the dance recital and a press conference in terms of importance to me. If it were possible, I’d be there.

Every year, there’s someone who was at last year’s conference who’s not there the next year. There will be a lot of friends of mine who won’t be there this year because they’ve died. I cry whenever I think of any one of them–the thought of all of them not being there this year causes me physical pain. Every year I leave the conference, I go to the airport, sit in a bathroom stall, and bawl, wondering which one of my friends, old or new, will be the one who’s not there next year? Which one will I never see again, because they’re too sick to travel, or worse?

Last year at the conference, one of my friends had just gotten some news of progression, and she cried and said “I’m the one who’s not going to be here next year.” And I hugged her and told her that I will always love her, whether she’s here or not. Now it’s looking like she might be the one to be there this year, and I’ll be the one who isn’t. If I’m not there, which of my friends will I never get to see again? Which will never get to see me again?