October 1, 2023. The time I recently spent with my brother Monte was easy going, light-hearted, enlightening, joyous, precious…it was special. It was very, very special. If I had to do it all over again, I’d leave tomorrow. We had lots of fun spending time with other family members and friends, and we spent a lot of time reminiscing while revisiting some of our old stomping grounds, putting over 1000 miles on my rental car.
Traveling was fairly stress-free. I was one of the very few who masked up. For me, the last thing I wanted or needed to have happen on this trip was to get a virus of any kind. So I chose to be cautious. But guess what? I ended up catching a cold anyway. I don’t think it happened while flying. I’m guessing it was from being out in the world once I landed and being less diligent about washing or sanitizing my hands. Anyway, I got sick on day 4, and I’m still not quite over it.
I got home on a Monday, had CTs on Tuesday and saw Rugo on Wednesday. I wasn’t sure that I would be treated that day, first because I was recovering from a virus of some sort, and second the CTs showed growth of the largest nodules in my right lung. But Rugo wanted to go forward with the Cycle 13, Day 1 infusions. After some discussion, I agreed. It ended up being an especially long day since they wanted to proceed cautiously should I actually have COVID (which I tested negative for). My port draw was done in isolation after my appointment with Rugo rather than prior. With that delay and the added COVID precautions, infusions didn’t even start until around 2p rather than the scheduled 1140a. We finally headed home around 6p.
Moving forward with Cycle 13 was conflicting. I was okay getting another dose of the research drug Magrolimab, but with the moderately increased size of the nodules in my lung, it feels like the Sacituzumab is no longer working for me. I am ready to explore other options. One of those is focal radiation of the two largest nodules. We are currently waiting to hear from the radiation oncologist to find out if the location of the nodules would allow it. It can be risky, but everything feels risky right now.
The following Wednesday I was scheduled for Cycle 13, Day 8. Since the Day 8 infusion is Sacituzumab only, I questioned the actual benefit of proceeding. Rugo made a case for continuing, and I acquiesced. But in my heart and soul it felt like an old bandaid that needed to be changed on a wound that won’t stop bleeding. Cycle 14, Day 1 is still on my schedule. A placeholder, if you will. I’m hoping that’s all it is.
This is a crossroads in my treatment. I’m ready to withdraw from the clinical trial. And that’s scary. I don’t know what my options are. I don’t know what the future holds. I don’t know much of anything. My instincts urge me to move on, and my body has a need to take some time off. I’m not giving up the fight. I’m just tired. That seems to be how it is when you reside in the domain of metastatic cancer. You are constantly trying to stay ahead of the worst of it, suspecting that the other shoe could drop at any time. At every appointment and port draw and vitals check and CT scan, you find yourself holding your breath, hoping for good news, a nugget of encouragement, maybe even a miracle. And it’s exhausting.
This week is my week off, and another adventure awaits. Steve and I are reuniting with a small group of his childhood friends. Although they’ve known Steve since he was in the 6th grade, they have also been an important part of my life for nearly 40 years. I’m anticipating a lot of storytelling and laughing and hugging. The precious joy of being in the company of treasured friends. It’s like a gift from the universe reminding us to celebrate being alive.
May your choices reflect your hopes, not your fears. —Nelson Mandela
lana has cancer 