One year in: community is stronger than cancer

Hi, friends and family. Today is the 1 year anniversary of my diagnosis of uterine leiomyosarcoma, after a hysterectomy for what they thought were uterine fibroids.* 

When I reflect on the last year, in some ways, it has been the worst year of my life. My 4th abdominal surgery is coming up on Tuesday. I've had 3 different types of chemo and 25 sessions of radiation. I had to take leave from my job and step away from community organizing and activism. My family, friends, and I have dealt with the anguish of such a shocking diagnosis of a rare, aggressive, stage 4 cancer: the grief, the fear, the anger, the uncertainty, the pain and discomfort of all the treatments, and the loss of my hair--one of my favorite physical characteristics. I feel very unlucky and still long for those pre-diagnosis days when I didn't have endless medical appointments and didn't have to confront my own mortality, almost daily. The first oncologist we saw after diagnosis kept calling this cancer a "tough" one. What an understatement. 

At the same time, this has been one of the best years of my life. I attribute most of that to Liam, Fiona, Nora, and all of you. The love and support from friends, family, and community is just astounding. And the diagnosis has shifted my perspective. It helps me more deeply appreciate each moment I have, swimming in a lake with my fam and friends, biking on a river trail, laughing with friends to the point that I cry, seeing live music with Liam or just chatting while doing dishes after the kids have gone to bed, drinking Miller High Life on the porch on a warm day, or Lagavulin 16 on a frigid day, cuddling Fiona and Nora and hearing their delightful silly laughs, dancing with my sisters in Libba's kitchen for her 40th birthday, taking in the glory of the fall foliage, and feeling Ripley curl up and plop down on my thigh on the couch.

There is a cancer support center near us with a great resonant sign. My favorite thing about my job organizing is the community that we build while fighting for bus service or housing rights or climate justice. And the wonderful thing about a terrible situation like cancer is the community that forms in the face of it. I'll never be able to show my full gratitude to all of you, but please know that it has made the worst year one of my best years. 

Some highlights since my last post include a trip to Detroit with Liam sans kids: Motown museum, Diego Rivera murals, fancy dinner with the most flavorful food and cocktails, walking around a beautiful historic city. What a dream. Shout out to Janice and Mike for watching our kids. 

Our friend Brian visited! Liam has known Brian since they were Nora's age.

My sisters and I surprised Libba in Boiling Springs for her 40th birthday party (one of the best nights ever), with a brief pit stop in Pgh. 

And Halloween! 

Finally, here is some good medical news. Up until recently, my scans had either shown rapid recurrence after surgery or tumor growth after chemo. But the Oct 24 scan showed that the radiation had stunned the tumors, as expected! And the center of one of the tumors was necrotic, meaning the cells were dying. It was amazing to get the response we wanted. We also want the radiation to stop any microscopic growth, and time will tell on that front, but we'll take this good news for now! 

I also learned that my surgeon Dr. Grignol is feeling confident about removing the tumors during surgery on Tuesday, and it's less likely I will need a colostomy.

Finally, recent genetic results make me eligible for an experimental less toxic treatment which combines a chemo pill called temozolomide and a parp inhibitor pill called olaparib. There have been some promising trials for this treatment, which I would start a few weeks post-op, so we are feeling hopeful about this!

I will let you all know how surgery goes on Tuesday.  It will likely be a stressful day due to the election as well, so I'm sending everyone love and hope. 

xoxox,

Molly

*PSA: if you or someone you know has fibroids (which are very common) there is a very rare chance they could be cancerous. Make sure you consult with an oncologist if the fibroid is large or appears to be growing rapidly. Actually, if there is any mass in your body, consult with an oncologist.