Amazing, what a real vacation can do for the spirit! Despite two weeks of travel out west and now a short trip to Asheville via GSP (where there are nonstops and affordable fares, even considering the rental car) I am relaxed, resting and writing at the Comfort Inn while waiting for Gabriel to nap before I pick him up from school. I feel as though I've taken a turn in the road, and I'm ready to get on with things.
This is no small feat, after the last 16 months of living with Robert's melanoma. I have lived under a shadow, knowing that his lesion was big, deep, and aggressive. His is not a case of "skin cancer lite," a term I've heard recently in reference to basal and squamous cell carcinomas and melanoma in situ. I don't always smile when people ask, "But they got it all, right?"
Yes, I've sighed with relief when there was no evidence of disease (NED) at the six-month and one-year marks knowing that the highest likelihood of recurrence is in that time. But the thing about melanoma is, you never know what little bits might be floating around in there waiting for the right time to make their presence known.
I have spent a good deal of time in the last year learning about melanoma treatments. I've had many vehicles for this education. The most important has been our periodic visits with Dr. Lipson, Robert's oncologist, who is very good at explaining things in terms we can understand. I've also followed news of recent research reports and other articles that come up in my internet feed. Some of that information has been useful in blog posts I've written -not as many as I had intended, perhaps, and many partially researched but never followed through. I believe I am reasonably well-informed.
My most constant source of information has been the Melanoma Research Foundation's patient information page (MPIP), a discussion forum frequented by people who are actively fighting the disease. This includes "newbies" (those recently diagnosed and their loved ones and caregivers) as well as people with later-stage cases. Some of the best-informed participants in the forum have had recurrences and/or more than one family member as patients. Some have been fighting melanoma for more than 10 years.
My habit over the last year has been to read recent postings at least once or twice a day, and some days even more often. I've learned things I needed to know, and I've gotten help there in learning how to manage life with melanoma. Sometimes I've contributed, though most of the posts are asking about situations we have not encountered and I have nothing to offer in response.
Reading the MPIP posts can have a down-side. Most of the people who contribute a lot there are dealing with later-stage disease, seeking advice about how to handle treatments and their side-effects. All too often there is news we don't want to hear - of someone in late-stage, or whose melanoma battle is over. It can be demoralizing and depressing.
I've thought for a while that I needed to visit the forum less frequently, but honestly it was a habit that was hard to break. I actually received benefit from it for most of the last 16 months, but I've come to know over the summer that it was time to quit. I just couldn't ...
This is what the vacation did for me (among other things): it broke the trance I was in, focusing on melanoma so intently since May 2012. My visits to the MPIP were the last vestige, and going on vacation broke me out of it. We were busy and without reasonable internet for most of the trip, and I didn't even think about it until I got home. At my computer Thursday, I went back to my old habits - but I knew I didn't want to do it any more so I stopped. That felt good!
I don't think I've abandoned MPIP completely. I'm sure my days of researching melanoma are not over - I still feel the need to keep up on the latest research and treatments, even though I'm not living under that same cloud. If we face a recurrence, I'm sure I'll go through a lot of emotional upheaval and won't be able to think straight for a while - that's what happened last time. I want to make sure I have a good foundation if the dread disease comes back to visit.
Perhaps I'll give myself time every week for deciding what I want to follow on MPIP. It may end up being the newbies, just learning about what their life may be like. I think I have some insights that may help some of them. And, if I'm really ready to move on to some other focus, I would like to be able to help others do that as well - when their time comes. This will happen for many of them - whether temporary or long-term.
In another post, perhaps also written from Asheville (or maybe not until I get home), I'll try to collect my thoughts on what's next for me. And I'll try to get the vacation review posted. I got at least a few amazing photos I can't wait to share!
So ... on to ... something else! More about my pondering of priorities in a future post.