Month: January 2014

Maybe someday scanxiety will stop having such a hold on me. It persisted through the long time (almost a week) that it took for Hopkins to post the results of all the tests Robert had done last week. The reports I read last night confirmed what Dr. Lipson found at our visit last Tuesday – no evidence of disease. Whew!
The visit with Dr. Lipson was encouraging – to me, at least. He didn’t see or feel anything suspicious, and he looked at the brain MRI and abdomen/lower extremities CT scan while we were there. But I heeded his caveat that he’s not as good at reading the scans as the radiologists are, and I also wanted to know the results of the chest and neck soft-tissue scans since those are likely places for a recurrence (due to proximity to the primary site). All the results were posted yesterday. There were a couple of nagging things to look at, having nothing to do with melanoma. Each scan report specified “no evidence of metastatic disease.” I slept well last night, for the first time in a few weeks.
Another reason the Hopkins visit was encouraging is something Dr. Lipson said to Robert (with a little prompt from me). I try not to nag Robert about not exercising – and I mean not exercising “at all,” not just “enough.” The weather’s not good for bike riding, but even when it was, he didn’t choose to go. And the gym just isn’t his thing. But I hate to see him getting soft … My inquiry to the doctor about whether Robert had gained some weight raised eyebrows – but the scale showed no gain. Even so, Dr. Lipson chided Robert a bit by saying, “I plan to keep you alive for a long time, so you need to take care of yourself.” That allowed me to breathe more easily during the day. It was only at night that it caught up with me.
So, scanxiety is over until May 1. We have lots to do between now and then!

I think I was born an editor, not a writer. In fact, for most of my life writing has not come easily for me. Throughout my life before I retired from BNA, I was able to do it successfully from time to time – occasional good research papers during college come to mind, along with one or two well-done market research reports and product proposals near the end of my employment. But being a freelancer with a heavy writing project load was difficult. And, until recently blogging was particularly difficult.
As I noted in mid-December, I went through a fairly severe writer’s block last fall – the first time in my life that I remember it being like this. Typical me – I tried to make it go away by ignoring it through most of November and into December. Then, I started thinking about what might be different this time, hoping to come up with clues that would help me unlock my words. Eventually I came to understand that the style of writing I’m doing now (mostly blogging) needs a different approach.
I never found covering meetings particularly easy, and it was my least favorite part of traveling for business during my time as editorial product development manager for BNA’s tax subsidiary. I needed to go to meetings to meet people, to find out what was going on and figure out how we should cover the subject of whatever project I was working on at the time, but I dreaded writing about the meetings afterwards. The press of deadlines helped me push myself to make sense of what I had heard and file a story or two, usually the same day, for Daily Tax Report. Most of the time I think I did ok, but probably not as well as a reporter would have if we had been able to send one with me.
Editing was always my thing. Someone else gives you the words, and all you have to do is think about what they wrote and figure out whether/how it could be clearer, more complete, easier to understand (sometimes, more correct). Prototyping publications was always easier when I had someone else’s words to work with. When I didn’t – when my job was to write, to demonstrate the kind of material we would publish – I would labor over it, outlining and planning and finally making myself put the words out there. “Labor” is the important concept there.
Market research reports and data-driven articles, both before I retired and as a freelancer, were much easier. I think that’s because you had to spend a fair amount of time analyzing the data before you could write anything down. For me, data analysis is coming up with a series of bullet points, observations, questions left unanswered – writing down my thoughts. The main activity is thinking, not writing – but once I have those bullets, fleshing them out is more like editing to me.
Now that blogging is my primary writing activity, I had to find an approach that would break through that block. For some blog posts I have been able to assemble a “notes” file so that I would have something to run through while thinking about what to write. That helped for a lot of my early melanoma posts, when I was still researching a lot about the disease and trying to figure out what everything means. It’s not as good, though, for more personal posts – like this one, for example.
What  seems to have worked best for the posts I’ve written since mid-December is to capitalize on that “main activity” I mentioned before – thinking. If I spend enough time just thinking about a subject, figuring out what I think about what I’m writing about, I have an easier time getting the words out. That’s how this post got written. And the same goes for many of the ones I’ve written over the last six weeks.
I’m lucky that I have the luxury of time for thinking, now that I’m mostly retired. We live such busy lives during our “productive years” that time is at a premium; we just can’t get everything done if we steal minutes (let alone hours) to figure out what we think. But the lesson for me over the last month is that taking that time to think makes my working/writing time so much more productive.
Now I’ll try to make myself think about what to write for my chapters in the SPJ Freelancers Guide … Wish me luck with that!

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 … 

This morning a newly diagnosed melanoma patient posted a query on the Melanoma Research Foundations’ Melanoma Patients Information Page seeking advice on how to deal with all the new information she was learning about melanoma – sentinel nodes, wide local excision, micrometastases, Stage 3, 5-year prognosis, complete lymph node dissection, lymphedema. Her story was full of information she got from her brother, an oncologist but not a melanoma specialist, and her father, an orthopedic surgeon.
Her statement that all the statistics meant nothing to her at this point prompted me to reply. I’m cross-posting my response to her here. If you follow MPIP you can skip the rest.

[It looks like you have] some complex “stuff” to deal with. Not your melanoma, necessarily, but definitely the family situation!
I’m the daughter of a pediatrician, and that was helpful when my kids were little – I checked every little thing with my father and generally found a way to make sure he was satisfied with our decisions regarding his granddaughters’ medical care. He was just one of several medical people in our lives. When my husband got a (Stage 4 metastatic) melanoma diagnosis in 2012 I turned to my cousin-in-law all on the opposite coast  because she’s a pediatric dermatologist. She put me directly in touch with the head of the melanoma program at our hospital, who trained in her department several years ago and whom she knew very well. She did not try to give us advice, other than to see to it that we were consulting with someone who understood melanoma at the highest level possible. And, most important, she assured us that she would help us understand anything our chosen melanoma specialist said.
Long story short – the initial staging from the pathology report is not what we now understand. We have been dealing with Stage IIB melanoma. Getting the communication channels open with the RIGHT people has been critical to our mental health, particularly in those early weeks.
Your feeling that all the statistics mean nothing may not go away – and I recommend that you fight for that mental state. It’s hard to ignore a brother who is much more knowledgeable about the subject than you are, but perhaps you can “gently” ask him to only give you constructive information. Also, he might be the conduit for information passing from your melanoma specialist to everyone else in your family – that could be quite useful. But I really hope you can find a melanoma specialist you connect with, one who gives you all the time you need to understand what’s going on and where that fits into the limits of current knowledge about melanoma.
It’s great that your dad got your birth mark removed and then got you the wide local excision so quickly. You now have the initial pieces of information to understand what you are dealing with. Considering the rest of what you wrote and what’s on your profile page (Stage III, primary depth 2mm-4mm), you can take the time now to decide what’s next. 
A melanoma specialist can help you weigh the recent research report [referred to by another MPIP member in a previous reply] and help you decide whether a complete lymph node dissection is the right thing for you. Your instinct that this is a drastic step was correct. Follow that instinct and give yourself time to decide whether your case warrants taking that step – with a specialist at a Melanoma Center of Excellence whom you trust leading your team.
You have much to learn. Don’t rush this surgery just because you (and your medical doctor family members) are scared.
Please come back and let us know how things are going and how we can help you get through whatever you decide to do next.