Health Update

Good news, and carry on! On November 5 we made a day trip to Dana-Farber. In this time of COVID-19 we continue to keep ourselves safe. A long day for sure, but we limited our exposure to others with two stops for gas (yup, disinfected hands and card) and the numerous tests and appointment at Dana-Farber. Once again Dan wasn’t allowed to join me, but that gave him some napping time in the car.

From check in to check out I interacted with approximately fourteen individuals. In addition, I was on 7 elevators, most empty, but a couple with four people. I sat in three different waiting rooms, distanced. That’s a lot of exposure for someone who only visits with others outside and goes inside nowhere besides home and health related. My oncologist shared that their contact tracing has not found one case of transmission from a DF provider to a patient. They are VERY careful.

My scans and MRI were stable. The cancer is not visible in my lung, but the effects of fibrosis (cause by radiation) are evident (and bothersome to me). The cancer in my brain and liver is stable, unchanged since Lady Lorlatinib came riding in to take charge.

I am no longer in a study (clinical trial). Lorlatinib has been FDA approved, not for ROS1+, but for ALK, and while I didn’t hear exactly why this study is closing at year’s end, it is. (Some last years past approval) That means no more “free” drug as part of the study. EEEK!! For a bit I was quite worried – would my insurance cover the drug under compassionate use, and if so what kind of co-pay would there be? Well, fear not. The folks at Dana-Farber worked their magic and I’m receiving Lorbrena (brand name, different color too) with NO CO-PAY. Not everyone in the trial had the stars align quite so perfectly. It is sad that healthcare, medications, and insurance are not readily accessible to everyone. I just don’t understand why healthcare is not a human right in a country such as ours.

So my personal plan that I’ve worked with since I first went to Dana-Farber continues – Lorbrena (now) and my medical team work to keep the beast under control, and I work to keep my body, mind, and soul healthy. I was reminded of the nasty side effects of the medication when reading and signing the new material for the specialty pharmacy. (Not that I’m able to forget or ignore some.) I seem to have most of them, but not the life-threatening heart one. While mighty unpleasant, all are tolerable and manageable at this point. May Lady Lorbrena stay strong. I know I can.

Positive thoughts and prayers are appreciated for two of my lung cancer acquaintances. First, my lung cancer buddy R. (with whom I communicate regularly) went for a COVID test today with the hope that she will be cleared for a much needed procedure Friday. And also a young man with stage IV lung cancer that I learned about in our of my junk journal groups. Rob is being treated at MD Anderson in Houston, TX. Please, as they and their families have asked, keep them in your thoughts and prayers as they travel this lung cancer journey.

Even in these difficult times, I understand how very blessed I am. We have everything we need in our family, each other, our dachshunds and goats, a warm home with plenty of firewood for whatever winter brings. We even dug carrots and potatoes yesterday, still harvesting in mid November!

While sheltering at home, I’ll be finding joy in the everyday every day – watching the birds, distance visiting, playing with the dachshunds and goats, crafting, and enjoying having Dan home for the winter.

Stay safe, my friends. Wear your mask if you must go out or even if you invite someone in, wash your hands frequently, watch your distance, and avoid places with lots of people. A vaccination will be ready in a few months. Let’s all get there. Be well, and thank you for caring.