Happy Days

Yesterday was the longest day in Boston that we’ve done. Out the door at 2:30 AM, my first appointment was at Brigham and Women’s at 9:00. Hard time of day to arrive in the city, but we arrived, parked on the fifth level down, checked in for screening at Dana-Farber, walked across the inside bridge to Brigham’s, and made/found our way to the Shapiro Cardiovascular Center for a CTA of my heart. This was a new and different kind of experience. Having had dozens of CT scans in the past, I thought this would be similar. It was similar, but not as similar as expected. First they needed to insert the IV and take my vitals. When the nurse saw my resting heart rate of 105, she immediately called for a doctor. I wondered why because that’s just my heart rate since being on lorlatinib. Well, I learned that your heart rate needs to be around 70 to get a good image. So, the first two pills administered by the doctor got it down some but not much. The next one, nothing. No worries, I learned, as they can just administer it intravenously. (This, after waiting over an hour for things to take effect, all the while thinking I’d be late for scans at Dana-Farber.) Then came the scan. It was similar, but not, to my usual scans. Lie on hard table, arms over head. Only I had the sticky monitors on me. And, I had to have two nitroglycerin pills under my tongue to open my blood vessels, I think. (Like the slowing of the heart rate, to get the best images.) The contrast for this was the same, with that feeling that you’ve wet yourself as soon as it enters the bloodstream. The scan was quick, like my others. When done, I had my blood pressure taken lying down and standing (something about the heart rate lowering med) and I was on my way.

We made our way back across the bridge for my bloodwork, CT scans of chest/abdomen/pelvis (without contrast due to having contrast already that day), lunch, brain MRI, and oncology appointment at 3:30PM (30 minutes late in reality, but they must have been with someone who needed them more yesterday). Then, finally the drive home, facing rush hour bumper to bumper traffic for nearly 30 miles before breaking free to cruise home for a 10:40 PM landing. Phew. What. a. long. day… The dachshunds were very happy, but made sure we knew they had been well cared for by our grandson. The GOOD NEWS of the day is that my heart looks normal, no damage from my treatment (radiation years ago, targeted therapy drug side effects), and the cancer hiding out here, there, and who knows where in my body is STABLE, still being pinned down by My Lady Lorlatinib’s red, sparkly, high heeled, steel toed boot. Hip, hip, hooray!! Thank you, My Lady (and all those who made her possible, and to my team).

Remember the title of this post is Happy DAYS. Yesterday certainly was one. Today is absolutely another. Today is our forty-ninth wedding anniversary! Yup, 49! For a while we didn’t dare dream we would reach this number. Here we are, and oh how happy we are to be here, together looking back at a life filled with family, love, joy. (I know, I know we’re much too young to be married this long.) After a long day yesterday, we had a quiet day today, with a trip with the dachshunds to get take out for dinner, celebrating by simply savoring some delicious food and our time together. That precious gift of time. Happy anniversary to us, Dan. And may we share many more years together in gratitude for our gift of time.

One goal for this blog is to spread hope about living well with stage IV lung cancer, especially, but really any chronic disease. Another is to share information about ROS1 and treatment, and keep you informed about my journey. Thanks for reading. Now I’m off to spend my summer finding joy every day in the everyday, in the field, along the shore, and in the waters of the Salt Pond. Our world needs joy. Please try to find some, make some, share some.