Author: Hazel Becker

When we first found out about Robert’s melanoma, we did what we had to do just to survive. I couldn’t begin to walk back into that scene and tell you how I was feeling at the time, or analyze it and tell you how we learned to cope. But I have a few suggestions for caregivers of newly diagnosed melanoma patients, stemming from my experience during those first few months and from discussions I’ve read on the Melanoma Patients Information Page (MPIP) sponsored by the Melanoma Research Foundation.
1. Find a means of getting as much information as you need to help both you and your loved one deal with this new situation. You probably fall into one of these scenarios:
If you have a partnership (legal or other) with the patient in which you share information, problem-solving, and decision-making, be prepared for your relationship to change as you and your partner grapple with your new, unequal status. Only your partner is dealing with this life-threatening situation, but both of you are going through something that will alter your lives – adjusting to a “new normal.” Each of you may need something the other one does not – and you need to respect each other’s needs. Get what you need for yourself to cope with this new reality. If the patient needs something different, something you are not a part of, don’t stand in her/his way.
If you are the parent or guardian, or if for some other reason you’ll be in charge of the patient’s care, no doubt you will have a whole slew of other considerations you might need help dealing with. Get a grip! Just as with oxygen masks on the airplane, you need to be as clear-headed as possible to help your loved one.
Whether partners or parents/guardians, you need find a medical adviser you can communicate with well – who trusts you with information, answers all your questions and makes sure you understand, gives you the time you need, maybe even picks up on nonverbal cues about what’s going on with you and the patient. If you can find a melanoma specialist like this – if possible, an oncologist who specializes in treating melanoma – that would be best. If not, find a medical professional to consult who will talk you through all the information and make sure you understand it.
For family members and close friends, follow the patient’s lead and accept the information that’s offered in the forum it’s offered in. I will be forever grateful to our closest family and friends, who for the most part accepted the news that Robert had been diagnosed with metastatic melanoma in a group email without grumbling – at least, not to us. Everyone respected our request for no phone calls for a few days, sending encouraging emails in response. That was all we could handle at that point. After a few weeks we were able to respond to gently proffered requests for more information or clarifications, but in the beginning we needed to proceed at our own pace.
If you are close family or friends and have some medical or scientific background, the patient may ask you for assistance. If not, do whatever you need to do for yourself, find out what you need to know for yourself, and offer assistance to the patient and primary caregiver/partner – but go no further. It’s fine to make sure they know you are willing to help them understand and interpret what they are learning, but follow their lead.
And, please please please take the advice handed out most often on the MPIP: keep a positive mental attitude, particularly when communicating with them. Don’t dwell on the terrible historical data melanoma researchers have published, going back many years, that are not as relevant in this time of fast-moving research and development of new treatments for this disease. Help them focus instead on the remarkable cases of patients who have lived for many years as Stage IV melanoma survivors. Even if it’s hard, you need do this – or you may risk having them push you away just when you want to be as close as possible.
2. Free yourself of time-consuming and burdensome chores. In part, what that meant for me was starting this blog as a means of telling our closest family and friends what was going on, to avoid either of us having to repeat the same “stuff” eight or 10 or more times. We had much to do, much to learn, and much to deal with inside ourselves. We didn’t have the time or the emotional energy to spend on anyone else.
Not everyone was meant to blog; another outlet for disseminating information may work better for you. I know people who have shared information through the websites Caring Bridge and Lotsa Helping Hands. Others have designated a family member or close friend to keep an email list and/or take phone calls on their behalf. The important thing is to spend your time and energy doing what you need to do for yourself and those who depend on you. Let the others take care of themselves.
Early on, I was fortunate to be able to suspend my freelance writing and editing business without incurring a financial hit. Both Robert and I finished up on pressing deadlines and cleared our minds so that we could deal with essentials – researching and learning about melanoma, seeing that our legal and financial affairs were in order so we didn’t have to think about them, scheduling and attending medical appointments. We were focused completely on the melanoma, on ourselves. As we had the internal resources, we extended our circle. That worked for us.
Another way I freed up time was by becoming very organized. Part of Robert’s and my “deal” was that I would take care of “business” so that Robert could spend as much time as he wanted keeping up his law practice. For me being organized meant I got a plastic portfolio-envelope to hold all the doctors’ reports and studies so that we have everything at hand, and we take it to all medical appointments. This cuts down on the time both we and the doctors have to spend waiting or looking for results of past scans and labs.
If your insurance and/or financial situation is complicated, keep a separate folder, spreadsheet, or computer file for all the bills. Put copies in either the front or back of it as soon as they come in, but don’t open every one immediately. Instead, make time once a week or at least once a month to deal with them. You don’t want to lose track of what’s going on with the medical bills, but they should not be your main focus to the exclusion of your emotional and physical wellbeing.
3. Be prepared to seek and accept support if you need it. I was lucky to have people I could turn to, to talk me through whatever was needed. I also found quite a bit of strength inside myself that I didn’t know was there. I have considered joining a cancer or caregiver support group, and I may do that someday.
If you use the website Lotsa Helping Hands, it also provides a calendar to ask for help from family and friends without having to ask any individual for help with any task. I know many people who have used it to organize their helping communities so that they would have time to re-energize themselves and provide their loved ones with the support they need.
For me this blog has provided an outlet that has, so far, kept me sane. For Robert, this has meant exposing to the Whole Wide World some private “stuff” that he might not care to have everyone know. For me, it’s meant sharing a lot of inner feelings with him this way, without some of the intimacy we had before. And, without reciprocation. This is part of my new normal.
4. And, finally, be open to your new normal, whatever it is. Heed the advice of so many MPIP participants – keep a positive mental attitude. Life’s too short to spend it in a funk, or lamenting this turn in your life’s road.

A case in Robert’s law practice has got me thinking about what happens in humans’ brains when we see or hear something without any context. One issue has to do with what government investigators thought they were hearing on a wiretap. I hope what I’m learning from thinking about this will apply not only to my life with an N.E.D. cancer survivor (one with No Evidence of Disease) but also to other circumstances of my, and my family’s, life.

[A note on timing: I wrote this on February 25, but it was embargoed until some of the underlying story became public record in a court case. So, the timing is a bit off.]
First, for those who don’t know: Robert is a lawyer who specializes in appellate litigation. Most of his clients are prison inmates who are appealing their convictions, but every so often he agrees to represent defendants at arraignments or other pre-trial proceedings. If a case ends up going to trial, he helps the defendant find a lawyer with courtroom experience at that level.
One current client (referred to here as client C and as female) was arrested for possessing or buying just enough drugs to feed her habit. C also was charged with being part of a drug conspiracy that included a murder. That’s because, on a wiretap, she was heard talking with her dealer about her need to go to the DMV and get a driver’s license. Taking this tidbit of information on its own, the investigators conjured up a story about what kind of code language this could have been. They decided it indicated that C was part of the dealer’s drug operation because she was speaking in this “code.” Their report put this hypothesis forward, and C was charged in the murder conspiracy as well.
Apparently the investigators listening to the wiretaps didn’t know that C had, indeed, visited the Department of Motor Vehicles a few days after that phone call in an attempt to get a driver’s license. In the absence of this knowledge, they made up a story to support their hypothesis that C had participated in the dealer’s criminal enterprise.
We often see this phenomenon – making up stories to fill the vacuum when we don’t know what’s really going on – on the Melanoma Patients Information Page (MPIP), an online community sponsored by the Melanoma Research Foundation. It came up recently in a post from an N.E.D. survivor who had a very small melanoma removed over a year ago and was terrified by a painful lump under her arm; she feared it was a sign that the cancer had spread to her lymph nodes.
This melanoma survivor indicated in her post that she was writing on the MPIP “just to get my fear out.” She readily accepted the comfort offered by those who posted in response, reassuring her that cancerous lymph nodes usually are not painful. She said she knew it was probably a pimple or infected hair follicle, but added, “It’s just funny and sad that now small things freak me out.”
I hope over time she’ll find living with N.E.D. less freaky, but no promises. Robert had a quarterly check with his dermatologist last week, and the derm removed two spots by doing “scrape” biopsies. There was no reason to suspect that these overgrown freckles were melanoma, and some doctors use scrape or shave biopsies for removing spots or even moles in such circumstances. But some people who post frequently on the MPIP advocate always insisting on having a punch biopsy, and when I saw Robert’s wounds I found myself questioning whether he should have had one of those instead.
My lapse into “what if it’s back?” didn’t last but a second, not even long enough to freak out about it. Perhaps that’s because I have enough knowledge from reading posts on the MPIP to put these spot shaves into perspective. I know that most melanoma patients don’t ever turn up with another primary, and the most likely recurrence would be in the form of a satellite lesion closer to where the first one was excised. But as recently as a year ago, I’m pretty sure I was still freaking out over small things.
I’ll try to put this into practice in other aspects of my life. When it comes to writing and producing publications, I’ve known for years that it’s really hard to do when I don’t have enough knowledge. I can’t help but wonder how much grief and unpleasantness I might have avoided in my life if we all waited until we understood what was going on before getting upset. Life’s too short to spend it angry or hurt or scared because we don’t put something into context.
P.S. to friends and family who have been around us in the last week: too bad I didn’t think all this through earlier. Sorry for the tension you’ve observed or been part of. 
P.P.S. on March 12: If you are among those referenced in the first P.S., I hope you’ve noticed a change. I think my writing this, and Robert’s reading it, helped!

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.

Today’s opinion piece in the Washington Post by Juliet Eilperin goes a long way toward answering a question I’m sure many of our family members have wanted to ask – why Washington? It’s such a fickle, hyper-political place, and “Washington journalists” are such a despicable lot. Whatever made us want to come back here 30 years ago, to raise our kids in such a fast-paced, high-cost environment?
Juliet’s answer, and ours, is that this is a place where our work could have a meaning beyond making a living. “It is cool to make fun of Washington’s superficiality and detachment from the rest of America,” she wrote, to chide the “Beltway-itis” that afflicts so many people who come to D.C. for a perhaps-limited purpose and then never leave. But by choosing to stay, disenfranchised though we may remain (as U.S. citizens who don’t have a voting representative in Congress), Robert and I have both had opportunities to do important work while raising children, now adults, whose cares and efforts extend beyond their immediate circumstances.
Juliet’s article more closely answers the question as it pertains to me because I have remained a journalist. I had found my way into a company (then known as The Bureau of National Affairs, Inc. and now know as Bloomberg BNA) that aimed to disseminate information about how the government works, primarily to businesses and people for whom that information could make the difference between success and failure, profits and losses. For several years Juliet’s mother, Sophie Cook, worked there, too, as a lawyer with expertise in alternative dispute resolution who edited a publication on that subject. So, I would like to think that Juliet’s introduction to journalism as something of a “BNA brat” had some effect on her career path. (In truth, I’m sure it had more to do with the social consciousness of her parents and the environment they provided to help shape her character as she was coming up.)
In our case, I’m sure the work we did when our kids were young had something to do with their development into caring, giving people devoting their lives to helping others get through the challenges life presents them. Our dinner conversations would as often touch on Constitutional debates, becoming lessons in human rights and responsibilities, as on what they learned in school that day. We talked most nights about something to do with the government – in my case environmental regulation, science policy, and tax and in Robert’s case press freedom and the criminal justice system. We also talked about the societal ills facing less-fortunate populations of the District.
I’m not sure what would have become of Robert’s and my careers had we not moved back to D.C. in 1983, but I can tell you this much: mine would not likely have been in producing journalism that matters. BNA gave me the opportunity to develop not only as a journalist but also as a person. I simply can’t imagine what my career, or may life, would have been like had I stayed in Hartford, Conn.
Robert’s decision to go to law school was based on his desire, when he started, to carve out a niche for himself as a journalist, but his nine years as publications director for the Reporters Committee for Freedom of the Press gave him the opportunity and experience to specialize instead in something else: appellate ligation. Representing criminals in the appeals courts most likely did not enter his mind at that point. In addition to his law practice, he remains active in First Amendment law as well through the D.C. Open Government Coalition. His “work that matters” continues.
I’m sure all of those factors have had something to do with the people our daughters have become. Allison’s decision to go back to school in her mid-30s and earn a master’s degree in social work was a long time coming, but the seeds were planted long ago, perhaps at our dining table or otherwise in the social rubric of this city. Loren’s advanced degree in public policy and her career concentration in global health and development speak for themselves. I take no credit here – the hard work has all been on their part. We simply chose to raise them in an environment where what matters to others, their real concerns about how to get along in sometimes-hostile surroundings, also matters to us.
None of this addresses our decision (so far) to stay in D.C., with its fast pace, high cost of living, and disenfranchisement still affecting our lives. Perhaps I can write about that in another post.