Month: March 2014

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!