Caregiver Scanxiety

[missyrand]

It's not that I'm new to this rodeo, but last week when we waited several days longer than usual for the results of my husband's PeT scan, I had a righteous dose of scanxiety going on by the 3rd late day.

Spoiler alert: The results were good news. No evidence of melanoma in any of my beloved's fabulous internal organs. Thank God.

We are in year 3 of living with melanoma. Wayne moved from stage 3B to 4 last August when a BB sized lump appeared on his upper leg, totally far away from the top of his head where all previous melanoma was located. At the time when the metastasis appeared we were nearing the end of 2 years of Keytruda (N=35 infusions) treatment with low side effects and visual evidence that the melanoma had been halted in progress, and tissue was demonstrating dead cellular activity. Yeah for us! We were working through our thoughts and feelings about stopping Keytruda, then we were back on the roller coaster of new tumors.

He had a wide excision which removed the tumor, fully clean margins, clean PeT scans, healed ok, and we decided to continue with more Keytruda. In January, 2 more BB size tumors appeared directly on the scar line. Repeated a wide excision, removed the tumors, fully clean margins, clean PeT scan, I lobbied for and got him a Brain scan (also clear), and embarked on the murky journey of obtaining second opinions as to what to do next for treatment.

We chose watchful waiting (see earlier posts about what this is).

So we are doing 2 times a month Let's Get Naked full skin checks with each other (seems only fair), and when this PeT was scheduled, we expected it to also be clear. Not hearing back from the doc within our usual 24 hours (I know, our melanoma specialty practice group has been off the charts outstanding and prompt to work with), I talked myself down from some noticeable anxiety. By 3 days later, I was on the phone to the office, and the imaging center, where an unpleasant game of "we sent the results and can see it, so we don't know why the office can't also see the results" ensued.

This is where my scanxiety went off the charts. I felt physically ill, had shaking hands, had to be be intentional not to have my voice up an octave in pitch when talking to the 2 office staff who I was bouncing between on the phone, and was mentally irrational with thoughts of begging one of them to just get out of their chair and walk the result to the building 50 feet beside them so the doc could read the results and then call us. Eventually the results go across the medical electronics by late afternoon, but we still waited until the next morning to hear back from the office.

So I spent the weekend getting my blood pressure back to normal: reading, walking, being with friends where we focused on looking at Mid-Century Modern house and gardens on spring tour, singing in church, watching movies, breathing. My sleep is still disturbed, but I'm hoping that will catch up.

How are you all managing scanxiety these days?

missy