Two kinds of scanxiety

In the melanoma community, and perhaps among groups with other cancers, there’s a condition known as “scanxiety” – the anxiety that patients and their loved ones experience waiting for results of CT/PET scans and MRIs performed to look for and measure active lesions. For some of us (like me!) the anxiety begins even before the scan is performed. Hence, I am writing about this 10 days before Robert is scheduled to be scanned at Johns Hopkins, the final appointment of his participation in a clinical trial of the melanoma GVAX vaccine.

Looking for a new support resource

My friend John Schappi posted recently about his participation in a support group for Parkinson’s Disease patients, so I decided I would look again at support resources for melanoma patients. I started with what I knew – an online community that I’ve been relying on for information over the last 10 months. But as I’ve noted in recent posts, our experience with melanoma is in transition – from an active battle against the beast to one in which we get on with our lives. So, it’s time for something else – and my search continues.


I’m coming to realize that I’m going through a form of PTSD that is not uncommon for cancer survivors and caregivers. It’s nothing new – a literature search finds articles and papers about it going back at least to the 1990s. But it’s new for me, something I hadn’t thought about before. Oh my, will melanoma ever stop giving me opportunities to learn about things I have no desire to know?

Realistic and optimistic at the same time

Sometimes I have difficulty figuring out how to do something until I am able to articulate just what needs to be done. My challenge this time is transitioning my focus from Robert’s 10-month (so far) fight against melanoma – surgery, recovery, deciding what treatment course to follow, and clinical trial of an experimental melanoma vaccine – to a less active battle against a recurrence of the disease.

Time for an adjustment

My life is at another crossroads, and I’m learning more about myself as I figure out where I’m going next. It’s another lesson in how we deal with uncertainty – something Robert and I do in very different ways. He is better able than I to face up to difficult situations as they occur. I am – have always been – better at dealing with challenges when I have time to think them through. And this challenge – getting on with our lives, post-melanoma vaccine trial – is a giant.

What's in a name?

My quest for a “name” for Robert’s melanoma came to an end today when we saw Dr. Lipson at Johns Hopkins Hospital. We were there for the one-month follow-up after Robert received the last of four sets of injections with the melanoma GVAX vaccine as part of a clinical trial at Hopkins. I hope my question today about whether Robert’s melanoma has been classified as “nodular” marks the last time I ask for a name.

Eyes OK!

Today we visited the front-of-the-eye ophthalmologist for a test to see if Robert can keep driving. (He can. Yay!) He hadn’t been to an eye doctor in a while because his retinal specialist retired and we didn’t get around to finding a new one yet. But Dr. Ladas did a thorough exam and looked in there for anything that didn’t belong. All is OK in the eye department!


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