For a while it seemed as though I might escape the dreadful scanxiety this time. But as we approach Robert’s appointment at Johns Hopkins on Tuesday, it’s making up for lost time ... I’m sleeping poorly, awake during the night, waking up hard (not refreshed) in the morning after strange dreams.
Maybe it’s not the delayed start of this pre-scan worry that’s causing the intensity this time. Another possible cause, or at least a contributing factor, is the five-month interval since the last appointment with Dr. Lipson in mid-August, just before we left on vacation. We were supposed to be on quarterly schedule for skin checks with the dermatologist, plus scans/oncologist visits every four months. But this set of scans needs to be done this month because it’s the one-year follow-up for the GVAX trial that Robert participated in, which ended January 29, 2013 when he had his last injection. We couldn’t do it in December, four months after the last set of scans.
I noticed that scanxiety was creeping up on me a few weeks ago when I started monitoring the Melanoma Patients Information Page more frequently. The MPIP forum, sponsored by the Melanoma Research Foundation, was a mainstay of mine through the first year and a half after Robert’s diagnosis. In the fall I found that I wasn’t going to the MPIP as frequently and saw that as a sign of recovery from the intense melanoma focus I had been living with. But I’m back to monitoring it every day or two now. Perhaps that will slack off again after Tuesday, assuming there is no evidence of disease (N.E.D). We’ll see.
Several people on MPIP recently have reported recurrences of melanoma after about 10 years. Considering that in May 2012 we thought we were looking at 8 to 10 months, I’ll happily take another eight years!! One drawback to reading MPIP regularly is that people with early recurrences (in the first year or two), those with active disease, stay on the forum and some people with N.E.D. don’t post very often. That makes 10 years look really good ...
In addition to the time Robert and I would have together, a longer interval before recurrence would give researchers more time to find a cure. And there’s one more reason to look for a long interval – offered by Celeste, another melanoma blogger (see Chaotically Precise: Life, Love, and Melanoma), in response to one MPIP poster with a recurrence after 10 years: “One thing in your favor is that since you went 10 years before a recurrence of your melanoma, it is rather ‘indolent’. Not all melanoma waits around like that. But, it seems, and some research indicates, that patients with those long breaks between melanoma episodes have something going for them..though the researchers and docs are not sure exactly what that is.”
I hadn’t heard this before, and I love her use of the word “indolent”!! I love the concept of a lazy micro-metastasis waiting around for 10 years before deciding it’s time to party. No micro-mets would be better, of course, but I’m all for giving them time to find a cure. And we have every reason to be positive about Robert’s ability to fight if recurrence comes, considering his immune response to the first lesion and his participation in the GVAX trial.
If it sounds like I see recurrence as inevitable in Robert’s case, rest assured – that is not so. But I am reminded, again, that the way I best deal with this passive melanoma prescription of “watch and wait” is to be optimistic and realistic at the same time. If I don’t get to dance with N.E.D. this week, I’m sure I’ll be in shock. But if that happens, I think this time I’ll be able to bring myself out of it more quickly and without chemical assistance. And meanwhile, we’ll keep planning for the time we spend together, making sure we take every day as a gift and making every day count.
I’ll post Tuesday or Wednesday with the results. Meanwhile, keep on keepin’ on ...