Category: Blog

Our annual trips to Johns Hopkins for Robert’s participation in a follow-up study after his melanoma vaccine trial have become fairly routine. Leave about 7 a.m., check in by 8:30, CT scan and brain MRI, go see the blood-sucker, fit in lunch somewhere along the way, and then see Dr. Lipson early in the afternoon. Today we were home about 2:30. Easy up, easy back, and no news is good news. No evidence of disease.
Since there were no medical issues to discuss, we used our time with Dr. Lipson to get an update on melanoma research. He said the most prominent news is the ongoing developments in combination immune therapy, in which researchers are using antibodies that activate the immune system in various combinations. The research shows that the therapies are effective in a number of cancers, including kidney cancer, breast cancer, lung cancer and lymphoma as well as melanoma.
He said he wasn’t talking about the TIL therapy that’s gotten a lot of publicity over the last few years – in which they take T cells out of the body, modify them so that they fight melanoma cells, and then infuse them back into the body. I’m pretty sure that the TIL therapy we’ve heard a lot about is likely to be very expensive if they are able to bring it to market – so expensive that sometimes I think of it as the monster that could eat all our money someday.
The thing I find most exciting about the research that Dr. Lipson was talking about is that some of the researchers are working with medications that activate the immune system without actually taking the cells out of the body. We can hope that someday this will lead to effective therapies that can be commercialized without the prospect of either being available only to very wealthy patients or bankrupting those who can’t really afford them.
Another thing that excites me about the immune therapy research is that some of the studies include patients with Stage 3 disease – not just those with Stage 4 (metastatic) melanoma. The problem with studying therapies in patients with completely resected melanomas – those, like Robert, who have no evidence of disease – is that without a tumor to shrink, it’s hard to tell whether it’s working. As Dr. Lipson said, “in people who don’t have any evidence of disease, you wait … and you wait … and at some point you have to say, ‘Well, this did it.’ [Or not, as Robert noted.] Even if you have two groups of people with a thousand patients in each group and you wait five years, it’s a long time for a trial.”
Five years. Trial or no, it’s a long time to wait. And as Dr. Lipson explained, the risk tapers off during that time. It’s not as though you are fresh out of surgery, and you know that the risk of recurrence is highest in the first five years, and then you hit the five-year mark and it’s gone. So what does it mean to be at the half-way point – two and a half years with no evidence of disease? Will it be different in June, with the next set of scans, at the three-year mark?
I think not. Or if so, only to the extent that we’ve learned even better how to live with the uncertainty of being a melanoma survivor. Life goes on, and as long as it does we’ll continue to make the most of each day.
So, I’ll get back to that now!

I was surprised, to say the least, when a longtime friend and fellow journalist recently lamented about the state of the news industry today. He was complaining about staff cuts in newsrooms of all kinds (broadcast, print, digital), layoffs and forced retirements, sparse staffing, and, generally, what he perceives to be a lack of quality standards in the media today.
I commented that I, too, am concerned about where the news business is heading. My particular concern is the loss of the newsroom, where young journalists used to be trained and mid-career professionals learned new skills, honing their craft so they could move up or out.
Yes, he agreed, that was a problem because “it’s all about freelancers now. They have no standards. They don’t know how to do real news. They are bringing the quality down.”
I could not believe my ears. This is someone I’ve known all my adult life, who grew up in the news business at the same time I did and with whom I’ve had so many conversations about our careers and achievements through the years. Putting me down, along with countless other seasoned, highly skilled journalists now working on our own and persevering, even as we watch our comfortable newsroom environments disappear or morph into unfamiliar home offices that have replaced the supportive havens where we became good at what we do.
Others in the conversation understood the implications of my friend’s statement in terms of my work status for the last seven years – a retired editor and news product developer making a reasonable pension supplement as a freelance writer, editor, and publication consultant. My friend did not even consider that he was talking about me.
I have no patience with hurt feelings, and our friendship is too long-standing and too strong to take a serious hit. I put his statement into the context of where he is in his life, approaching retirement and more than ready to move on from the unhappy place his newsroom has become.
Besides, perhaps he was expressing concern about the same thing that worries me: who will train the next generation of journalists? Where will they learn the importance of accuracy and fairness? So many of them won’t have a newsroom, a seasoned copy desk to do side-by-side editing from which they learn writing skills, fellow staff members to bounce ideas off and from whom to learn how to do the job better.
I know many freelance journalists who have chosen this career path and are happy to be on their own. I know many others, mostly mid-career reporters and editors, who have been thrown into the freelance life without warning or agreement. Most are finding a way to make a living doing what they know how to do and had no intention of leaving just because the business side of publishing hadn’t figured out how to make a go of it yet.
Many of the freelancers I “hang out” with (virtually and in person) are members of the Society of Professional Journalists. We are journalists first, with professional standards for accuracy and fairness as espoused in SPJ’s new Code of Ethics. We want to produce news that matters, features that enrich and teach, along with other works that help us earn a living without creating a conflict of interest with our journalism assignments.
We will not likely produce all or even most of our work for traditional publishers – newspapers, magazines, broadcast stations. Many if not most of us will produce news for audiences who need or want what we do badly enough to pay well for it. We also will produce news and features that compete on the internet with junk that finds its way there from who-knows-where – and hope enough people know the difference to keep our publishers in business.
I also hope we’ll help teach the next generation – those who don’t find a physical newsroom with good editors, mentors, and fellow staff members who create a collegial learning environment to start their careers in. I hope we’ll create virtual newsrooms, produce e-books and training videos, and present courses and seminars to help fill the gap created by the decline in the traditional news.
It’s starting to happen – as evidenced by SPJ’s new Freelance Community and trends in other niche journalism organizations. I hope it will continue.
I also hope my friend will find a way to look forward with a positive approach. Life’s too short to waste time lamenting what we’ve lost.

The main reason I’ve hated working so much since May 15 may not be what you think. True, I didn’t have time for blogging or reading much. I didn’t like getting up earlier. I was tired at the end of the day. I didn’t sleep as well. But the main reason I hated it was that I gained five pounds.
For background: I put quite a bit of effort over the last four or five years into losing 23 pounds – just a bit shy of my goal. I gained some back (about five pounds) last winter when my bone doctor wanted me to eat two servings of fat-free yogurt every day to increase my calcium intake. We agreed this wasn’t good, so I started focusing on other high-calcium foods (mostly leafy greens and nonfat milk) and cut back on the yogurt. I stopped gaining but didn’t shed any of the pounds I’d gained.
I was just beginning to adjust to the idea that I might not be able to preserve my remaining bone density and still get to my weight goal when I agreed to a contract with Bloomberg BNA – my first work in two years – to help launch the new Premier International Tax Library. Specifically, my friend Rita McWilliams asked me to help her with the International Tax Developments Tracker, which consists of daily summaries of recent tax developments from 114 countries. Most of my work needed to be done in the mornings, and that killed my daily workout routine. Some weeks I didn’t get to the gym at all. Bad news!
During the work-up to launching the new product, I gained another five pounds. Now that the Tracker is live, I’ve returned to my routine of going to the gym every morning. Since early August I’ve lost two pounds. Now we are headed in the right direction …
The only dietary change I’ve made this summer is to cut back on the amount of wine I drink. I’ve found that I enjoy the right wine just as much when mixed with seltzer – a “spritzer,” I think it’s called. A couple of ice cubes and a slice of lime, and I can drink two glasses for the calories of one. Such a deal!
I made this change in early summer, but I didn’t see the weight gain begin to reverse itself until this month, when I started exercising regularly again. Perhaps it’s not a very scientific study, but I’m taking the results seriously. And maybe, now that we’ve changed weight direction, I will eventually achieve that goal set years ago.
Other changes since I stopped working so much, particularly in the mornings, include sleeping better, reading more, and now this: writing for this blog again. I’ll try to get back in the habit. Not sure what I’ll write about – but thinking of topics and writing in my head come more easily while I’m on the elliptical machine. I’m sure something will come up.
Cheers!

Results from Robert’s scans on Monday are in, and they show no evidence of disease!!! Such good news as we approach the two-year mark after surgery that took the remaining detectable melanoma out of his body.
Surprisingly, I had only a little scanxiety this time around. There are several possible explanations for this change.
For one thing, I’ve been too busy to worry about it. I started a new project for BBNA in May, and I wasn’t sure until today that I would be able to do the work from home. I was caught between dreading the commute to Crystal City to do the everyday part of the assignment and not wanting to disappoint my friend who is spearheading the project. Problem reduced to manageable today. Whew!
Another reason could be that Robert is doing so well. He shows no sign of illness, past or present. It’s not uncommon for asymptomatic melanoma survivors who are feeling great, living life to the fullest, to turn up with satellite lesions or distant metastases, so how he feels is an unreliable indicator. But I believe that his “watchful waiting” schedule (dermatologist every three months, oncologist every four, scans at least every six) gives us the best chance of early detection if the disease recurs. I’ve heard that most recurrences are found by physicians at check-ups. If that’s true, our current schedule gives us the best shot at catching it quickly if it does come back.
I think the real reason for my lack of scan dread this time around may be the very positive developments in the treatment of advanced melanoma in the last two years. Since Robert was first diagnosed, ipilimumab has been approved by the FDA and has become a standard treatment. New anti-PD1 therapies are in the pipeline, some fast-tracked by FDA and others coming along in the pipeline. Patients continue to have positive responses to TIL therapy. Combinations and progressions of the various treatments for Stage IV disease are  keeping patients alive longer, and some N.E.D. survivors remain that way for many years – time they did not think they would have with their families, in productive pursuits, living their lives and enjoying every day.
We have come a long way since that time (only two years ago? it seems like forever) when we were reading and hearing six-month to one-year survival estimates. Of course we have a lot of information we didn’t have – no longer thinking of Stage IV, no longer looking at “metastatic” in the description of Robert’s condition. Even so, if ever there could be a demonstration of progress I’m sure this is it.
But I think the most hopeful change is in the oncologists’ toolkit for fighting the disease. To all our family and friends – and all the melanoma warriors out there fighting with us – whatever you are doing to contribute to the battle against melanoma, please keep it up.
Thanks and love!

At last, the beginnings of a new theme for my website! I am approaching the point where I want to migrate content from by-words.com to this website, and I’ve created a tab for Editing & Publishing, my business (officially now known as Hazel Becker, Editing & Publishing LLC). Progress … but yes, a work in progress!
I had a vision for the theme, some of which may not work in the long run. Robert took my vision and made it happen online. I’m learning about Drupal 7, making changes as I learn. At this point, the live site is my sandbox – forgive me if it looks different every time you come here for a while.
Questions remain.

Is the banner photo too big? Does it make people scroll too soon after arriving at the site?

What content on my old website won’t make it here? I don’t need all those work samples, so I’ll have to pick and choose. But which ones? Those I love the most and am proudest of are not necessarily the most important to display on a freelancer’s website.

How will the balance between my blog and my business website come out? Am I interested enough in being an active freelancer again to make it primary, or will I relegate it to some minor slot?

Just how quickly will I learn Drupal 7? How much of the functionality I’m looking for will I be able to build on my own? How can I keep my website from being just one more online space for Robert to tend?

Will adaptive design allow me to post and change things from my tablet? Does it matter?

Do looks really matter anyway? Or is content still queen?
We’ll see where it ends up as time goes on. Meanwhile, here we are – at the beginning.
Enjoy!

A common theme on melanoma discussion forums is frustration with the length of time between scans when when patients are on the “watch and wait” regimen after being told there is no evidence of disease. It’s been bugging me lately – probably because I needed to have something to stew about to ward off scanxiety as we approach Robert’s six-month scans in early June.
So, I asked Robert’s melanoma doctor about this when we went in for the four-month check-up last week. Robert quipped that I want him to glow in the dark so I wouldn’t need a flashlight to get to the bathroom at night, but Dr. Lipson answered thoughtfully with a discussion of how much radiation is too much. Here’s the gist of what he said.
U.S. guidelines for the frequency of radiological scans to look for any suspicious growths in the body that might be melanoma are set by the National Comprehensive Cancer Network. For patients whose disease is staged from IIB to IV the guidelines call for chest xray, CT, and/or PET scans every three to 12 months for five years and annual MRIs of the brain. (The guidelines are discussed in an article published in the Journal of Clinical and Aesthetic Dermatology in September 2013.)
So, within that range, how do you decide how often to scan? You look at the extremes. The most frequent extreme would call for scans every week or two, but this would be too much because the change you see from one week to the next would be negligible. That means it would be too much exposure to radiation. One month doesn’t give enough time for something to change either. Could you do it every two months? Again, probably not; eight weeks isn’t that much time unless you’re looking at something very specific and want to know whether this particular spot has changed.
At the other extreme, is a year too long? Probably so, because if something is starting to grow you want to know about it sooner. Even nine months, he said, is “probably an uncomfortable period of time.” In our case, four to six months is the range Dr. Lipson is comfortable with.
Another factor is how closely the patient is being followed with skin and physical exams. Since Robert sees the dermatologist every three months for a thorough skin exam, including destruction and removal of suspicious spots and biopsies when appropriate, and sees Dr. Lipson every four months for physical exams, including lymph node palpation, a six-month schedule seems reasonable to him.
Then, the clinch factor is considered (at least by this doctor) – the patient’s comfort level. Since the national guidelines leave it pretty open, he said, “if … you’re really not comfortable with six months, then let’s do it every four months – that’s certainly within the guidelines. It’s an extra exposure to radiation every year, that’s all.”
Robert’s next scans are early in June – about five months since the last set were done at Johns Hopkins. He will also have scans and a brain MRI in December for his next yearly follow-up after the GVAX vaccine trial. Assuming all goes well between now and then, I’ll have to become comfortable with the six-month schedule – to prove to Robert that I don’t want him to glow in the dark!
One more wrinkle in learning to live with melanoma …

Today’s New York Times opinion piece by two nutrition researchers brings me back to a topic that was part of my last post – losing weight. It reviews a long-standing debate about what kind of calories are best to keep us from gaining and help us lose body fat. It has me thinking about altering my approach somewhat.
As I wrote last week, my solution a few years ago was to combine determination and discipline – my determination to shed pounds and the discipline to count calories – to reach my goal. Happily I can tell you that I am among the one-in-six people who have lost more than 10% of their body weight and kept it off for more than a year. However, my weight has been creeping up over the last year.
The reason for my recent weight gain was apparent to me when it started to happen. As many people do, I have competing health needs, and avoiding osteoporosis became a focus after I stopped taking hormones and Fosamax at the same time. My bone density dropped enough to raise alarm, and my physician referred me to a rheumatologist to investigate and figure out how to deal with the problem. The new doctor gave me several simultaneous strategies, including eating two helpings of yogurt a day to boost my calcium intake.
There was no way I could keep within my calorie “limit” and eat that much yogurt, even the no-fat low-calorie kind. Besides, this period coincided with Robert’s participation in a clinical trial for a melanoma vaccine, and I could not keep that much determination or discipline attached to my weight. Consequently, I’ve gained back about eight pounds. I’m still more than 10% below where I started, but I’m not happy with the trend.
A few weeks ago I decided to start tracking calories again. A follow-up visit to the rheumatologist helped bump my daily yogurt habit down a portion, though I’m being attentive to how much calcium I take in – still trying to avoid hunched shoulders and broken bones. I’m happiest eating a healthy diet anyway, but the downside of that is that it doesn’t leave me many high-calorie targets to remove from my diet. I’ve struggled with keeping my calories below the “limit,” particularly since the limit goes down every year as my metabolism continues to slow. I’m still working out three or four times a week (good, hard, high-impact exercise), but I’m eating more because that adds calories to my limit.
The New York Times article gives me a new approach to think about. It reviews the old debate – should you eat a low-fat or low-carbohydrate diet? It explains the mechanisms by which our bodies use and store calories. And, it is steering me back to something I read a few years ago, when I first started my disciplined, determined drive to get thinner.
“With reduced consumption of refined grains, concentrated sugar and potato products and a few other sensible lifestyle choices, our internal body weight control system should be able to do the rest,” the authors wrote. For me this means:

cutting out sweets (those with refined sugars and/or high-fructose corn syrup), which won’t help me much because I tend not to eat cookies and cakes anyway;

no white bread or low-fiber pastas, easier because I’m already pushing toward whole-wheat products and pastas in which at least 10% of the carbs are fiber;

making fried foods a luxury reserved for times when nothing else palatable is available, more difficult for me because I’m not the one who chooses how our food is prepared (and I refuse to ask Robert not to make fried okra anymore); and

no chips, the killer of this list.
So, I’m back to the two Ds – I am determined to follow this regimen as closely as I can, and I hope I’ll have the discipline to stick to it. If it works, perhaps I’ll write about it again here in a few months. If you don’t hear from me on the subject again and you want to know if I’ve continued to gain weight, feel free to ask in the fall. If I don’t reply in one way or another, you can assume that I’m off looking for a different answer.

Ann Patchett wrote in her new book, The Story of a Happy Marriage, about thinking up stories in her head while waiting tables early in her writing career. She perfected this technique to the point where she was able to, essentially, write entire novels in her head before scribing them on a keyboard.
I wish I could do that! Oh, I can write in my head – I just can’t get through the “scribing” part.
I can’t tell you how many blog posts I’ve written over the last two months. You won’t read any of them, though. Admittedly, it has been a strangely busy time. I lost the entire month of April, going to Florida while my 93-year-old mother began a remarkable recovery from abdominal surgery and then accompanying her on a long-planned trip to see her sister in Oklahoma at the end of the month. Then, last week, there was our trip to Asheville to celebrate my daughter Allison’s becoming a Master of Social Work – Phi Alpha honor society, straight As, what an achievement!
All those trips, and the events they surrounded, gave me lots to write about. And I did! I constructed entire blog posts about resilience, determination, living independently when you’re “old as dirt,” realizing dreams when you don’t have enough money or time to be comfortable, observations on parenting a teen and preschooler at the same time, Oklahoma!, going back to work (albeit part time) after nearly two years away, passing the two-year mark after a devastating diagnosis of metastatic melanoma (later revised to melanoma of unknown primary). Just to name a few.
I might even be able to write some of them down now that I have the time. But it wouldn’t be the same, because my thinking on some of these topics has changed. In some cases I know how the story ends, and it would be hard for me to write the words as though I didn’t – even if I could remember them.
So yes, I can write in my head, and sometimes I can scribe what I’ve written. That’s how  you happen to be reading this. But, consistently? A whole story? Or a novel? I doubt it.
That’s how Ann Patchett wrote her first novel, The Patron Saint of Liars, which I loved. She waited tables for months while thinking it up, and then she got a fellowship on Cape Cod over the winter during which she scribed it. Somehow, she dredged up the duo of determination and discipline to make it happen.
I can’t go back and reread Patchett’s essay now to check my memory because the library took back my e-book when it expired. But it’s a theme she goes back to several times in this collection of essays, some of which are about her success as a writer. She talks about having the determination in high school, and then about developing the discipline that winter in Provincetown.
I have succeeded, on occasion, at things I knew I wanted to do but had failed at before, by using that same formula. In at least two cases, I had previously tried with one but not the other. I quit smoking on January 1, 1975, after 13 years of what became a pack-a-day addiction. I had the discipline to do it before, but didn’t really develop the determination until Robert and I decided to have a baby. That New Year’s resolution was easy to keep – I quit cold-turkey, knowing that I didn’t want to be pregnant with my lungs clogged up like that.
Losing weight was a different story. I was determined to do it for a long time, but didn’t begin to succeed until I found a system that would allow me to be disciplined about it. I can’t say it was easy, but I dropped more than 20 pounds by consistently tracking calories and making sure I kept below my limit.
Determination and discipline. I know those are keys to my ability to achieve hard things. My thanks to Ann Patchett for helping me figure that out.
 
 
 

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!