April 2013

A delayed date with N.E.D. – but no news is good news

Before we left Johns Hopkins Hospital this morning I thought we might actually have some results to report today – but alas, it was not to be. The fellow who made up the CD of Robert’s brain MRI said that if we waited about 10 minutes, he could print out the report for us. Our wait was a lot longer – and then he came and said the doctor hadn’t signed off on the report yet. It was lunch time, and he didn’t want to keep us waiting.

Bummer! But even so, I came home without the anxiety I’ve been carrying around – despite the screw-ups that make me want to take back some of the good things I’ve said before about Hopkins.

Some background on melanoma treatments

For me, moving on from Robert’s active fight against melanoma Stage IIB into the nerve-wracking “watchful waiting” phase means keeping up-to-date on the latest research into therapies in use or under study for patients with more advanced disease. I’ll share some of what I’ve learned so far, and then I’ll try to keep you informed when I learn something new.

To understand how researchers are trying to fight melanoma, first you need to understand what cancer is. I’ll start with a short primer; click here to jump to the next section if you want to skip it.

Back to the blog

Sometimes when I take a break from blogging it’s because I’m busy. That happened in February, for example, when we went to Asheville for almost a week and then my sister and brother-in-law came for a visit. My two-week lapse earlier this month was for another reason—during that time I spent a lot of energy and brainpower (such as it was) dealing with depression. I’m pulling out of it now, and I hope that writing about it will get me all the way there.

Those who have read my last few posts might have gotten an inkling this was going on—one about post-treatment stress disorder, one about my search for support resources, and last week’s post about scanxiety. I hope this will be the last in a series ...

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?