Survivorship

Still stable! Last week Dan and I had another whirlwind appointment day at https://www.dana-farber.org Out of bed at 3:00 AM, on the road at 4:00 (the plan anyway), and arrival (despite lots of traffic) at Dana-Farber for 9:45 check-in and screening on Yawkey 1. My blood draw, MRI, and CT scans were all at the Dana building on L1. That makes the day much easier, less back and forth, up and down. After all the tests were done we went to the cafeteria for a quick lunch before my 1:30 PM (more like 2:15) with Dr. Janne.

“Everything looks good!” Cancer wise that is. Of course my Lady Lorlatinib, who keeps her foot on the cancer, causes high cholesterol (along with other side effects). That doesn’t seem like much of a problem when you’re facing cancer here, there, and everywhere in your body. But when the cancer has been kept quiet for six years with the same medication, then the side effects of that medication take on more importance. Despite two cholesterol lowering medications, my cholesterol remains above normal levels (all due to lorlatinib). So in October I have an appointment with a cardio-oncologist at Dana-Farber, part of their Adult Survivorship Program. “Cardio-oncologists are typically cardiologists who see cancer survivors or patients getting cancer treatment who develop side effects that affect the heart. Cardio-oncologists have a special interest in and knowledge about cardiac side effects of chemotherapy, targeted therapy and radiation to treat cancer. ” Imagine that! I’ve lived with stage IV lung cancer so long that the concern is how the high cholesterol is impacting my heart health LONG TERM. How great is that? Seriously. Managing the high cholesterol is now the priority. That is just incredible to me. Not that it hasn’t been managed all along, but now it is right up there with the stomped on cancer in priority. Now, to me that is hope! And, it is part of the plan for living well with stage IV cancer, taking care of my body and mind while Lady Lorlatinib and my amazing team deal with the cancer. Long term. Huh. I just keep pinching myself.

All this can change tomorrow if Lady Lorlatinib grows weary and lifts her steel toed boot. But in those six years new treatments have been and are being developed, including one specifically for ROS1+ that shows great promise in clinical trial. And I will now add another specialist to our team for better managing my heart health for the long term.

The ride home Thursday was long, yet uneventful. Heavy traffic, slow going for a while. We listened to the Trenton Acadians’ game. My chauffeur once again maintained his perfect “trip to Boston” driving record, getting us home by bedtime. We are a great team, with terrific support around us. (Thanks to my sister for taking care of the “kids” that day.) Now back to finding joy in the everyday every day at the Salt Pond, in the garden, along the shore, and in the field gathering wildflowers for natural dyeing. Hope and joy to all.