Responding to a recurrence

Hi, friends. I'm sorry to report that the scans April 11th revealed new tumors, at least one in pelvis and one in abdomen. We're angry and sad, but not very surprised. The scans happened earlier than planned because my blood test from Feb 21 picked up some tumor cells. It was a low number but indicated a tumor could be growing somewhere, even though nothing was visible on those Feb scans. I'm grateful we have this new technology that allows us to detect tumors early.

I stopped the previous chemo treatment I was on and started my 5th line of chemo (trabectedin/Yondelis) on April 19 to see if we can get stability. After 2 cycles, we'll see where we are the first week of June with another scan. If tumors are stable we'll stick with the chemo. If there is growth, I'm on a waitlist for a clinical trial. Fortunately the tumors are surgically removable, but if we don't get them contained through chemo or maybe low dose radiation, the risk of a fast recurrence post-op is more likely. 

We loved these months since the November surgery with no visible tumors, despite some challenging chemo side effects which led to 2 blood transfusions (I told the girls I felt like a vampire for feeling so good after getting someone else’s blood). Huge thanks to all you blood donors out there.  Even though the chemo was vigorously depleting my white and red blood cells, it didn't stop a 3x3 cm tumor from growing in the span of 7 weeks. 

Here I am waiting for blood transfusion. At least my hair looks good.

These scan results are obviously difficult for lots of reasons, but one of the biggest is the challenge of pivoting treatment, deciding what path is best when there is no set protocol, and then anticipating all the possible side effects, change in work plans, change in summer plans, etc. And while I knew recurrence was very likely, these new tumors affirm the aggression and persistence of this cancer. 

I had some pretty candid conversations with my doctors about the severity of my situation. It's challenging to hear that the median survival time for someone diagnosed with stage 4 leiomyosarcoma is 18 months. I got my stage 4 diagnosis Jan 2022, and something I have going for me is that we haven't seen "distant" spread. Rather than metastasizing to my liver or lungs (commons spots for folk with uterine lms) the spread has been regional to my pelvis and abdomen. And each recurrence has been surgically removable. The major downsides: we haven't found a systemic medication that brings stability or shrinkage of tumors, and the cancer tends to recur and grow quickly. I know my doctor's top priority is finding a systemic drug that works. Many folks with LMS can live with it for years if they find something that stops the growth. 

Anyway, I know we can take things a day at a time, be grateful that we still have options, hope for the best, etc. Also, it's just terrible dealing with this. The 2 good scans were hard for me to believe and to fully accept there wasn't disease growing somewhere, but one of the greatest things about them is we didn't have to make a big shift in treatment. And of course, now we keep going one day at a time, but I wish I could make plans (at work and in my personal life) and not feel like everything is always so contingent. 

I've had some pretty emotional days since this scan result and starting the new treatment, but I'm also taking this occasion to reflect on what my priorities should be moving forward.

Now for some good stuff:

Right after my first blood transfusion Liam and I went to Virginia for our friends Dio and Laura’s wedding. We were so thrilled to celebrate with them and party with Tyler and Karlie.

Then, Shane and Rebecca came to visit from LA! We were supposed to go see Bruce Springsteen, but the concert was postponed until September due to illness. Ugh so frustrating.  I guess the Boss is a human too. 

Our kids loved seeing their aunt and uncle who they call dragon mama and dragon dada! We celebrated Mike’s bday, and just look at our little leprechauns.

Our friend Kristy came to visit from Chicago!

And then Amy, Grace, and Fede!

Robyn and fam came through from Cincy for brunch

Work has been busy and good. We had a great event a couple weeks ago, challenging corrupt coal plant bailouts and got some news coverage! Hoping to continue working through this new treatment but will have to see how things go.

Then we did get to see Bruce in Cleveland with Coop! It was so good that we decided to get tickets to see him in Pgh in Sept, right before the rescheduled Cbus show. Right now my mode is that if something is worth doing, it’s worth doing three times. The theme of the tour is mortality and vitality--on our minds as well.

And we went to Louisville, KY Easter weekend. The kids found us a new pink house, and we celebrated human anatomy with a gold David--before going on a river cruise.

Our friend Kevin from Tacoma was in Cincy for work and we got to have dinner with him!

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The kids are doing great. The other day Liam was driving them to school and they were listening to, none other than, Bruce Springsteen. Fiona got out of the car on her own and said: "Dada, I want to be a musician when I grow up, because I want to be a rocker!" She then shut the door and walked right into school.

Nora is an aspiring artist who constantly wants to "drowwwwwww." The day we got the scan results we held off on telling the kids. We had nice weather that day and were chilling in the backyard. Fiona and Nora decided they wanted to paint the fence and got some water colors from inside. Then they proceeded to cover their bodies in paint and act like maniac warriors. Nora was certainly channeling William Wallace, though it also looks like they have chicken pox. It is so heartwarming to see them seizing on a moment to just unleash, and giggle endlessly.

The next evening Liam was at a conference for work, Fiona was at Janice and Mike's house for the night, and Nora and I were at home together. Nora was playing doctor, and then she actually wanted to hear my heartbeat. She put her ear to my chest, quietly listened for about 5 seconds, and looked up at me and smiled. Then I listened to hers. And then she wanted to hear mine again.

A week later I had to get an ultrasound of my heart; it was the day I was starting the new chemo to make sure I was healthy enough to take it. I lay there on my side hearing my heart beat and the sound brought me back to the ultrasounds I got when pregnant with Fiona and Nora. Those fast little heartbeats in my belly, right before they came into the world. 

My uterus held and nurtured my babies, expanding to fit each of their 8 lbs 11 oz (they were both born 4 days past their due date and the exact same weight). Right before birth, the uterus became the largest muscle in my body, and then it contracted like it's supposed to. But almost exactly a year after Nora was born, my symptoms showed up. Some uterine cells were growing, and this time they didn't stop. And now those same cells are seeded in my body and find ways to grow, despite our efforts to stop them. 

I understand that this cancer is a random mutation in the DNA of the uterine cells. And yet, how to reconcile that the same organ that nurtured the lives of Fiona and Nora is now threatening my life?

I often think of how much privilege I've had and how lucky I've been my whole life. Some of that luck (namely being free from a severe disease) has run out, but I continue to cherish all I have had and continue to have each day.

sending our best to all of you,

Molly