August 2012

Greetings from the Coast of Maine


Chewey at the Lobster PoundSo far Maine has been (almost) all about lobsters. What a treat! After an uneventful trip across New Hampshire, we arrived at the Lodge at Turbat’s Creek in Kennebunkport mid-afternoon Monday and headed for the beach. Robert and I have been to this lodge and this beach before, and things were pretty much as we remembered them. Colony Beach is dog-friendly, and we encountered a few pooches and many dog-hungry people there. Chewey ran a bit but, as we expected, was not happy when the waves chased him …

Welcome

I started this website as a blog in May 2012 after my husband was diagnosed with melanoma, and I blogged here actively, almost exclusively about melanoma, during his treatment. Most of the blog posts have been about our melanoma journey, but happily we don't have much to say on that subject these days.

By profession I'm a publication consultant and freelance writer based in Washington, D.C. Feel free to use the "contact" tab if you have questions or want to get in touch.

Sorting things out

Our trip to the University of Pennsylvania was valuable in two ways. We got a good synopsis of Robert’s melanoma – what’s positive, what’s negative, what’s the bottom line. And, we got a run-down of all the options for treatment, including some we hadn’t heard about before. We have one more piece of information to put into the mix, and then we’ll be ready to decide what’s next.

Thank you for ‘getting it’

A recent post on the Melanoma Research Foundation’s community list made me sad, mad, and – very thankful for you all. The writer, a newcomer to the community, was venting her frustration at her siblings’ lack of understanding that she is facing a very serious situation – newly diagnosed, recurring melanoma. She wrote: “It is so defeating to know that there will always be a 'next time' for surgery, and stitches, and co-pays. And there will always be another social expectation of a sunny beach get together.”

The understanding from our families and friends – the outpouring of concern, favors small and large, visits, cards, and phone calls – has been so important to us!

NED! So, what’s the big worry?

As more people in our wider circle of friends find out about Robert’s melanoma, I’m getting questions about the disease that our inner circle (family and closest friends) didn’t need to ask. That’s because we told them from the beginning that Robert’s diagnosis in the first pathology report was metastatic melanoma. Since we know now that as of June 18 his status was “no evidence of disease” (NED), a factor some newcomers know when they first learn of his illness, I am frequently encountering this reaction: “That’s really good, right? So he can just go on with his life and it’s not likely to come back?”

I can’t find fault with anyone whose initial reaction is just that. Most melanoma patients (about 70%) have superficial spreading cutaneous melanoma, and the long-term prognosis for that type is very good if caught before it has a chance to spread beyond its primary site. Five- and 10-year survival rates are sometimes cited as high as 100% for “melanoma in situ.” Although many people know that the prevalence of skin cancer has been growing at an alarming rate, many also understand that skin cancer is most often curable. As one patient put it, “I thought ... they would cut it out and that would be the end of it.”

The 'big deal' about primary dermal melanoma

Before 2000, melanoma cases like Robert’s – those that didn’t show up on the outside of the skin – generally were considered to be metastatic melanomas of unknown primary origin. Now, melanoma specialists recognize a subtype they call “primary dermal melanoma” (PDM). There’s not much recent information available on  the web about PDM – here’s my synopsis of what’s there.