Rapid Recurrence and Radiation Plan

Grouchy Grannies (à la Bluey) telling the cancer to go away

Hey, friends and fam. It’s been a really difficult couple of months, but I’m here and at home. Since my last post, I was hospitalized twice: first for a catheter-induced UTI, and then for a fever. They didn’t exactly pinpoint the source of infection, but I’m doing at home IV antibiotics and feel like a nurse each morning when I do the infusion. 

During my first hospital stay, 6 weeks post op, they did a scan and saw no tumors! It felt like such a miracle. But then, just 3 weeks later, I got another scan and multiple tumors had shown up, including one that was 7 cm. Yes, the cancer grew that fast. Many of the tumors are necrotic, which means they are liquid/dying on the inside, which is likely because they are growing so fast the blood supply can’t keep up.

I did start immunotherapy the day before this bad scan, and there is a chance some of the tumors could be responding to that treatment. However, based on a scan just this week, some are still growing very quickly. Surgery is not an option right now, so we need a fast way to stop this rapid growth. My doctors said if we can’t stop it, I could have just 6 weeks. I haven’t eaten solid food in almost 2 weeks because the tumors are obstructing my bowels again. And I feel consistent pain and pressure throughout my pelvis and abdomen. But over the past couple days I’ve managed to digest peanut butter and yogurt, so that’s helping a lot after just being on clear liquids. 

The plan is to stick with the immunotherapy and to start palliative radiation, hopefully Oct 9. It can take a while for the radiation planning to happen, and they are already rushing my case before a committee. Last fall, the radiation stopped tumor growth and then after the Nov surgery tumors were kept at bay for about 5 months. I can’t receive as much radiation this time or surgery right afterwards, but we are doing a more concentrated dose over just 5 treatments, and then we’ll see where we are. 

This recurrence is the highest volume of disease I’ve had and the risks are pretty high. My surgeon said she has never seen a case of LMS that recurs and grows so quickly. This is all devastating, of course, but we are relieved radiation is still an option and very hopeful it will stop growth and give us some time. 

I’m focused on spending my time with Liam, Fiona, and Nora and cherishing each day I’m home with them. We really appreciate all the love and support from you all.  Will keep you posted on how the radiation goes. 

Lots of love, 

Molly

And amidst all this horror, we still find ways to have fun: