Bold red-orange maple leaf

 

Hey, everyone. I wish I had better updates to share. On the good side I got pelvic radiation the week of Oct 9. It was painful to lay flat on a hard board with all the pressure from the tumors, but the side effects weren’t too bad and we think it has stunned the growing pelvic and abdominal tumors. So I’m eating better! 

The bad news is on Tues Oct 10 I got an MRI revealing multiple tumors in my liver—too many to radiate, as planned. And on Thurs Oct 12 I got a routine CT on my chest, and they called me back in from the parking lot as I was leaving to say that I had a collapsed lung and needed to go to the ER. The cancer has spread to my lungs and caused a leak. The air escaped into my chest cavity and then caused the lung to collapse. I had no idea and was likely walking around like that for a week! I had had some pain on my left chest a week before, but I thought it was gas or indigestion and it cleared up. So I had to get a chest tube placed and then a procedure called pleurodesis where they coat my lung with a substance to inflame it, so it fills my chest cavity, and even if there are leaks no air can escape. These procedures were excruciatingly painful, even with morphine, but I got through it and came home Sat. 

Then Sun I took a walk with the fam and felt a little pain on my right side. I went in Monday for my last radiation dose and convinced the nurses I should get a chest X-ray to check the right lung and sure enough, the right lung had collapsed! This was was even more severe. The thoracic surgeons got involved, so the procedure was done in the OR and I spent all week in the hospital. This process was again very painful. Dr Liebner said it’s rare for leiomyosarcoma to cause pneumothorax (lung collapse), let alone in 2 lungs! I’m so sick of being rare. Fortunately, the risk isn’t too high for it to happen again, but we’ll have to keep an eye on things. 

I can’t do more radiation in my pelvis any time soon, but hopefully the recent treatment can keep things at bay for a while. 

The main way to address the lung and liver tumors is another chemo. I was supposed to start Cabo (with the immunotherapy I was already doing) but Cabo can cause pneumothorax, so that’s off the table. We’re looking at Cisplatin, a platinum based therapy that is pretty toxic. Liebner thinks there is a less than 5% chance it will shrink these tumors, but it could give me some more time. So if I’m feeling okay this week, and the chemo doesn’t make me too sick, it could be worth trying. There aren’t local trials available and I don’t want to travel for one, which would likely take too long to set up anyway. In general, my prognosis is 4-6 weeks. 

We’d been fortunate the cancer hadn’t spread to liver and lungs sooner. And even though I’ve always said the many chemos I’ve done didn’t work (because the active tumors always grew) they may have been preventing other tumors from growing and therefore limiting the volume of disease. 

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These past few months, it has been difficult to feel myself when I’m sick and weak and vulnerable. A recent session with my therapist helped me realize I can always tap into my own strength and courage, and the visual that has helped me is the bold red-orange maple leaf. Change may be happening, but it doesn’t mean I have to wither away. I can always access my bold vibrant self as I keep going each day. 

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Liam has been absolutely amazing amidst this. He took leave from work and is devoting all his time to me and the girls, and he’s also bringing so much joy. That doesn’t mean we don’t get sad and let that out as needed, but in the day-to-day we laugh and have fun and cherish our time together. We took a quick solo trip to Cleveland for a concert which was wonderful. And this past weekend I was stuck in the hospital, so Liam brought the girls here for both days. We read books, colored, worked on a family photo scrap book, watched movies. And after seeing all the OSU Buckeye fans descend on the stadium dressed in red, the girls insisted on watching the football game against PSU. We could see the stadium from my room and the fireworks when they scored a touch down. The kids were chanting “Go red team! Go red team!” They’ve caught Buckeye fever through no fault of ours. 🤣

Oct 7 weekend I had my immediate family and closest friends—my inner circle—come to Cbus. We had a celebration in my living room where people went around and shared memories, silly, serious stories, and moments to represent our relationship. It was so incredibly special, one of the best experiences of my life. I had thought about making it a bigger event but realized it was going to be too much. I’ve been getting many of these messages already, but if anyone wants to email, text, write, or send a video message to me sharing a memory or story, they really warm my heart. 

Also happy to zoom or FaceTime or talk with anyone on the phone, so don’t hesitate to call if you want to chat. The best times are weekdays 930-4 and evenings 8-10.

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I’ve always thought life is actually pretty long. When I think about how much I’ve done in 42 years and think in normal circumstances I would live to at least twice that—it’s a lot of life to live. Yet it is still so utterly unfair that mine is being cut short, and while I am deeply grateful for all my relationships and the experiences I’ve had, I feel the most robbed of time with the girls and Liam. Our 15 year date anniversary is Thursday. We should be spending 60 years together! He is the best partner I could ever have, and I want to continue to spend each day with him—learning and growing and doing all the things we love together: visiting new cities, going to concerts and museums, whiskey tasting, trying new foods, partying with friends, taking walks, eating chips, and just talking to each other each evening. 

And I can’t express how devastating it is to miss out on being with my kids as they grow up, and to not develop relationships with them as adults. They are—and will remain—unique, cool, creative, and full of love and vitality. Losing my life also means losing my motherhood. I know we would have so many fun and meaningful times together: tubing down a creek, taking international trips, watching them learn about the wonders and horrors of the world, talking about how to respond to injustice, supporting them as they discover their interests and talents, meeting all the great people who will become their friends. 

I also know they have the most amazing support system who will be there for them, and I trust Liam, Fiona, and Nora will be ok. And so will you all.

I’m not afraid of death. I have some concern about the pain leading up to it but am assured that usually deaths from LMS can be peaceful and relatively painless. And yes, it is surreal to be writing this. And yes, I still hold on to the hope the cancer will chill out, and I’ll get much more time than expected.

Sending love to you all,

Molly