Thanks for coming to my NED talk

Hi friends! Things are going pretty well in Ohio since I got back from surgery. I actually got my staples out 8 days post-op and left NYC earlier than expected. I stayed in Carlisle a couple days due to the power outages in Cbus during a serious heatwave. Liam, Siobhan, and James managed the kids in the sweltering heat, with no ac or fans!

Mama and I got here June 16th and it was wonderful to see everyone. I was feeling pretty good overall, so Mama headed back to Carlisle a few days later. But that day, I started to feel a sharp burning pain to the left of my incision. It turns out I strained an abdominal muscle. I had been lying in Nora's bed and the guard to keep her from falling slipped and I reacted by catching myself. I was basically stuck in bed for 3 days because any movement was incredibly painful, and the pain meds didn't really help. Mama, being the amazing person she is, drove right back to help! And then Coop came from Pittsburgh! Within about a week the strain was much better, but open abdominal surgery takes a while to heal, so I continue to take things easy. 

We are doing our best to enjoy and celebrate my NED (no evidence of disease) status, and taking steps to maintain that as long as possible. Dr. Singer removed the 2 tumors with good margins, but he also found a small nodule in my peritoneal wall. Pathology indicated that was also sarcoma, and it's likely that it showed up after my last surgery in January (while the 2 we knew about were missed during the Jan surgery). I have a high risk for recurrence, in general, but I've been told that when the cancer is in the peritoneal wall, recurrence is even more likely. 

With that in mind, my oncologist in Ohio, Dr Liebner, is recommending we try to cut off any possible new tumors' food supply. I'm taking an estrogen blocker (b/c we think the tumors are fed by estrogen), and a pill called pazopanib (Votrient), a growth inhibitor which makes it harder for tumors to get blood supply. I just started that treatment this week, but we're hoping to figure out a dose without too many severe side effects. My next scan is Aug 10, and we will pivot as needed based on the results. In the meantime, I'm enjoying the time with Liam, Fiona, and Nora, and appreciating the support of food, childcare, and socializing from friends near and far. Thank you all so much for the continued love and support.

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I do want to share how much I struggled two weeks ago when I couldn't go to a protest after Roe vs Wade was overturned. The inability to do much about all the injustices of the past eight months is really weighing on me: the mass shootings, wars in Ukraine and Yemen, end of federal regulation of coal plant emissions, police murder of Jayland Walker in Akron who was shot more than 60 times.

White supremacy, patriarchy, capitalism, climate change. For the past ten years I've spent much of my time organizing against these oppressive systems, but since mid-October, most of my energy has gone toward dealing with the cancer in my body and prioritizing time with my family and friends. I sincerely hope to get some respite from intense treatment and recovery in the coming months, so that I can return to work and get back to organizing. In the meantime, I hope everyone reading this is finding some way they can respond to these injustices. I understand it is tempting to feel powerless, but we have really lost if we don't try.

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To end on a high note, the kids got their vaccines! And we made it to the annual Doo Dah parade Monday, which is a Cbus tradition full of satire and silliness. My friend Elissa gave me this phenomenal wig. The kids had a blast until the sugar crash.

sending love and hugs to all of you,

Molly

*title credit goes to my friend Dio