Month: March 2013

Sometimes I have difficulty figuring out how to do something until I am able to articulate just what needs to be done. My challenge this time is transitioning my focus from Robert’s 10-month (so far) fight against melanoma – surgery, recovery, deciding what treatment course to follow, and clinical trial of an experimental melanoma vaccine – to a less active battle against a recurrence of the disease.
I’m still not sure how I’ll deal with the uncertainty of “watchful waiting,” which begins after the scans scheduled for the end of April – our last of seven monthly visit to Johns Hopkins University Hospital for the GVAX trial. But I’m better able to take a step forward because of a response to my last post from Paul, a melanoma survivor who took time to respond on the Melanoma Patient Information Page (MPIP) sponsored by the Melanoma Research Foundation. He was also wondering what it would be like once he finished the GVAX trial – ready to assume a good outcome, but at the same time thinking he had to be “brutally realistic” so that he would be prepared if his cancer returns.
Here’s what Paul said that helped me over the rut I was in: “I have come to think that realism and optimism are not incompatible.” Once I was able to articulate that goal, I was able to take the first step toward reaching it.
Another person who responded on the MPIP described my state of mind as feeling like the “Sword of Damocles is hanging over your head all the time.” In some ways that analogy works for me – though unlike Damocles I don’t have the choice of leaving Dionysius’s throne and going back to the simple life of a peasant to escape the sword hanging from a horsehair. After living through two months of believing that Robert’s cancer was metastatic and fearing that he had less than a year to live, the knowledge that he’s had no evidence of disease (NED) since last June has seemed like a gift. And, I am optimistic that this gift is renewable – that he will be NED again in the April scans. Perhaps that feeling is not the opulence of Dionysius’s feast, but it’s just as welcome!
The realistic side of this state of mind tells me that it’s a good idea to continue reading the MPIP regularly and to write more about melanoma research so that I’ll be up on “the latest” if Robert’s cancer recurs. I’ll spend some time building out this website, too, so that I can share what I learn with others who need to keep up on the subject as well.
It’s a start – a first step. I’ll be ready for the next one – next week, after Passover seder.
Happy holidays, all!

My life is at another crossroads, and I’m learning more about myself as I figure out where I’m going next. It’s another lesson in how we deal with uncertainty – something Robert and I do in very different ways. He is better able than I to face up to difficult situations as they occur. I am – have always been – better at dealing with challenges when I have time to think them through. And this challenge – getting on with our lives, post-melanoma vaccine trial – is a giant.
I’m sure Robert also lives with the awareness that a lesion this big and this deep is more likely to recur and/or metastasize than a tiny superficial spreading melanoma. He has said to me, more than once, that he will not live his life any differently because of that possibility. I know that if the time comes to face the beast again he’ll do so with the same resolution and determination that he did last May. I, on the other hand, need to do it differently if there’s a next time.
Actually, in retrospect, I think I did pretty well. I did not cry or go into hysterics, which I might have done pre-menopause. My version of falling apart was all inside. Outwardly, I went on with things – getting finished with client projects while I started researching and finding out everything I could absorb about melanoma. That research is so similar to what I was doing for work that I was able to do it on autopilot.
As I began to process what I was learning, I became so distracted that I needed medication to set me back on course – it was either that, or stop driving. I came up with mechanisms to make sure I was paying attention at the wheel until the medication kicked in. It was clear that I couldn’t continue to serve clients at the high quality level I was used to delivering, so I decided to suspend my business after all then-pending projects were delivered. We had a whole string of decisions to make, starting with a trip to the lawyer before Robert’s surgery to update our wills and write health care directives and durable powers of attorney.  We also put our financial house in order  and reassured ourselves that we would be fine without my business income.
When time came for surgery and healing, I was able to be pretty cool about the whole thing. I’ve done my part as a caregiver, dressing wounds and helping make sure Robert was as comfortable as possible. I’ve continued my research on melanoma so that we would have as much information as possible when it came time to make decisions about treatment.
Over the last six months my schedule has been structured around the clinical trial of the melanoma GVAX vaccine at Johns Hopkins. We have now finished those visits and are anxiously awaiting the six-month scans to look for any active cancers. We’ll have one-year follow-ups at Hopkins post-trial and periodic visits to oncologists and dermatologists here in D.C., the nerve-wracking “watchful waiting” that so many cancer survivors endure.
I plan to continue writing about melanoma research, and I’ll no doubt continue to visit the Melanoma Research Foundation’s Melanoma Patients Information Page. Perhaps now I’ll also have more time to build out and design this website and move my old business website here. I may be more open to accepting an occasional assignment for clients, but I don’t plan to reinvigorate my business to its previous level. I’ve adjusted to retirement pretty well and enjoy the freedom from deadlines.
We’ll see how well I deal with the other adjustment – living with the knowledge that melanoma is an insidious, opportunistic killer that may come back for a visit. If other survivors and/or caregivers want to share their thoughts about this, I look forward to hearing from you.

My quest for a “name” for Robert’s melanoma came to an end today when we saw Dr. Lipson at Johns Hopkins Hospital. We were there for the one-month follow-up after Robert received the last of four sets of injections with the melanoma GVAX vaccine as part of a clinical trial at Hopkins. I hope my question today about whether Robert’s melanoma has been classified as “nodular” marks the last time I ask for a name.
I’ve been playing around with this question of “what kind of melanoma is it?” for a while now, and the reason has been obvious to me. I wanted the diagnosis to be “primary dermal melanoma” because the long-term prognosis seems to be better. I didn’t want the diagnosis to be “nodular melanoma” because this kind is described so often as “the most aggressive type of melanoma.”
When we saw Dr. Timothy Wang at Hopkins in January, he summarized Robert’s case by calling it nodular melanoma. I’m sure I bristled – I may have told him that I don’t think anyone ever called it that – but I didn’t pursue it at the time because it didn’t seem germane to what we were there for (learning how to look at spots). I brought it up today with Dr. Lipson because it’s been nagging at me for nearly six weeks.
Dr. Lipson explained that the diagnosis of nodular melanoma is a pathological one based on the layers of the skin involved and the way the lesion grows. He explained that for a long time scientists thought that people with nodular melanoma didn’t have as good long-term survival rates as those with other types. Now, he said, more recent studies have shown that’s not really the case. This may be because nodular melanoma doesn’t appear to the naked eye the way traditional melanoma does, and so it gets caught later – after it’s had a chance to grow and go deep into the skin. Most important, Dr. Lipson said that clinicians don’t differentiate between nodular and other kinds of melanoma – they treat it the same way and look for the same mutations. It may be different from a diagnostic standpoint, but “from a management standpoint it doesn’t change what we do.”
One of the pathology reports said Robert’s melanoma was either nodular or metastatic. If those are the choices, obviously I’d prefer nodular, but maybe it’s time for me to just let this be. Dr. Lipson assured me that the medical folks have the same debate about whether it’s nodular or metastatic in cases like this because often the way nodular melanoma appears, it looks like it came from somewhere else in the body. But at the end of the discussion, it doesn’t really matter. They have done what they can to help Robert fight any cancer left in his body. They will continue to monitor him so that if any cells are floating around in there, either from another site or because this one was so big and so deep, they’ll catch it early enough to do something about it.
Obviously there’s a lot more going through my mind right now. I’ll try to pull those thoughts together and write about them soon. In the meantime, we’re fine – Robert appears to be healthy, and I’m in a good frame of mind. Next stop: scans at the end of April. And in the meantime, snow! Stay safe and warm, everyone.