“Stay,” commanded Lady Lorlatinib. And cancer stayed. She is mighty, that Lady Lorlatinib. Once again, after a day of tests and appointments (my sixteenth with Lady Lorlatinib) with the experts at Dana-Farber Cancer Institute, we learned that this miracle med continues to hold her hand (or foot or bum perhaps) over, clamped down on perhaps, the Switch so little ROS1 cancer cannot turn on and hop back into the driver’s seat, racing crazily throughout my body. She is fearless, Lady Lorlatinib. She does her job tirelessly, never angrily, but quietly determined as she continuously moves throughout my body to keep cancer in check.
After 25 months we work well together, my team. I’m referring now to my immediate home team of Dan, Lady Lorlatinib, and me. Lady Lorlatinib’s job is ever so important. She meets her goals each day, making her rounds tracking down cancer, saying “No no, not today little ROS1. Every day is more time for the researchers working to develop and test her successor. My job of keeping my body healthy so she may do her job seems easy compared to hers. Instead of being irritated or scared by the sometimes painful sensation of Lady Lorlatinib making her rounds, I can now smile and say, “ Oh, that’s my med doing its job.” Trade-offs you know. What price can you put on saving one’s life? My side effects are definitely manageable. And Dan, he’s the one that gets affected by those side effects the most sometimes I think. Like the mood swing side effect that perhaps we won’t highlight. That’s when Dan says, “Must be the medicine working.” But through it all, I feel loved. Just because, because we love each other (or is it one another?), never taking the other for granted, always grateful for the gift of time to be together.
Living scan to scan never gets easy for us. Even when the clinical trial appointments have stretched from 3 weeks to six, then 9, and now are 12 weeks apart (with labs midway) as mine are. In reality, cancer is with us all the time. Because it actually is. There is no way of knowing when the cancer that’s a part of me now may overpower Lady Lorlatinib, mighty as she may be. Her special power is not to kill, only to control ROS1 cancer so my cells may live on happily and free. But like any caged animal, little ROS1 seeks to be free. And little ROS1, he’s a fast driver once he hops in the seat. The times he has been let loose have been most unpleasant. So yes, I too must stay vigilant.
Our trip to Boston Thursday was uneventful – that’s a good thing! Something we do not take for granted. My appointments began with a blood draw (2 small tubes for my labs and 2 big tubes for the study) and IV put in at Dana-Farber at 8:00 AM. Then it was over to Brigham and Women’s for CTscans and brain MRI. Strange thing – at DFCI I only have one bottle of nasty drink before scans, but at Brigham I have two. Hmm… After the MRI and IV out, it was back to Dana-Farber for a quick lunch before heading to floor 10. There I had vitals done (weight, blood pressure, temperature, oxygen saturation), an EKG, and my appointment with the oncologist and clinical trial nurse. We love them both. They are caring and competent, two of the best in their professions. “Scans look good.” And on we go from there. The final part of our day at DFCI is to wait for my 12 weeks of my medication. My prescription cannot be ordered until the scans and MRI are seen, so there is always a bit of a wait. My backpack filled, we leave the parking garage at 2:30 PM, headed NORTH. Weary from the physical and emotional work of the day, but relieved and ever so grateful.
Thanks to my sister who took care of the dachshunds and goats this trip, I even got to see my morning sunrise with a little dachshund (depositing some doodoo) in the photo. (I’ll share a different one.) It’s the only time I’ve left them overnight since my last Dana-Farber appointment, so we’re all getting quite used to Mama being home 24/7. Spoiled we are, in the best of ways!
Thank you for your prayers and positive thoughts for this journey. We are grateful for the time we’ve been given and the time we have ahead of us. And now it is time to pick the tomatoes. There’s salsa to be made! Finding joy in the everyday every day.
This wonderful t-shirt was designed by one of our grandsons. The front has two hearts, one with my name and one with my mom’s. He is our heart hero and understands what it is like to undergo tests, procedures, surgeries, and to work with experts in Boston (next door to my experts). Beulah’s Babies is the name of our large family team that participated annually in the Komen race (raising funds for breast cancer research) in memory of my mom. polepolebreathe.blog – well, you’re here. And I just love the lungs for me with the pink ribbon for Mama. Very thoughtful. Thank you to him.
polepole ~ breathe 