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?
7 thoughts on “The One Not There Next Year”
I read your blog and saw that your genomic testing showed that your cancer has high TP53 mutational burden
As my wife has MBC, I follow the studies frequently.
The results of a clinical trial (phase 2) with REOLYSIN, an immuno-oncology viral agent, in combination with paclitaxel (the study was done in Canada) were presented at the Annual Meeting of the American Association of Cancer Research (AACR), which doubled OS Of patients with TP53 mutation (10.4 months in the control arm to 20.9 months in the test arm).
I hope it helps you in some way!
Dearest Beth~ I am available to help you in whatever way I can. Because Rick and I have now come through the loss of both of our mothers in the past year, and I’m taking the year off from teaching, I have time and emotional reserves now!….please let me know what I can do for you and the family! Lots of love…Jocelyn
More hugs from a stranger…they are all yours.
This bullshit sucks. I love you. I wish I could fix everything. Or anything.
I got nothin’ but virtual hugs from a stranger… but I give them all to you.
Love you, Beth
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