HazelBecker.net

Which of the following would you agree with?
a)      I’m retired
b)      I’m busy
c)      I’m overcommitted
d)      all of the above
If you guessed d), you got that right! This post talks about what that means.

Now that Thanksgiving’s over and I have a little more time to think about my busy-ness, I’ve been doing just that – thinking about it. I think it’s mostly healthy, and I’ll be working on how to eliminate c) and still keep the commitments I’ve made.
First, let’s deal with the “mostly healthy” part. I seem to have been able to move on, by and large, from the melanoma misery. Don’t get me wrong – I know the risks remain. But we have done what we can, and now we are in the “watchful waiting” phase of being a cancer survivor. And, despite what I told our friend Larry on Sunday, I am not actively terrified that melanoma will revisit us any time soon. Robert will have scans and doctor visits as often as prescribed to make sure there’s no evidence of disease (my friend NED), and we’ll both go on living our lives.
I wrote in March about the philosophy I’ve adopted – to be realistic and optimistic at the same time. I wasn’t sure I could achieve that goal, but looking at my current state of mind I think I’ve done it. I’ve been able to make commitments and to complete projects on realistic schedules, and that demonstrates my optimism that we aren’t facing an imminent recurrence of Robert’s melanoma.
That is measured optimism, to be sure. A melanoma patient I met through the Melanoma Research Foundation’s Melanoma Patient Information Page (MPIP), Paul from the West Coast Washington, had a satellite lesion removed shortly after he finished the vaccine trial Robert was enrolled in. But other satellite recurrences I’ve read about on the MPIP recently have come nine or 10 years after the primary lesion was removed. I’ll take nine or 10 … 20 or 30 would be better, though! More time for us to do things together. More time for a cure …
Progress report
I started my quest for a more normal, less melanoma-focused existence by taking on a small project for work. This was not a lucrative venture – I spent many more unbillable hours than the time I got paid for. But I learned some new things, met an interesting neighbor, and had fun, so I have to consider it “time well spent.”
I’ve also made some other commitments to organizations I belong to. Actually my commitment to get the Kehila website redesigned and updated is very self-serving – once the project is done others will be able to take over more of the work to maintain the site. Still, it’s a big project – it will include a workplan, a Request for Proposals, and then the actual work. Months and months, not enough resources. And, I’m still maintaining the old site.
The other commitment I’ve made is to the Society of Professional Journalists. I’ve joined the SPJ freelance committee, which is committed to morphing into a “freelance community” in the spring, another big website project. Up my alley on all fronts. I volunteered to write several sections of the online freelancers’ guide, currently published as a PDF but planned as an HTML subsite for the community relaunch. Writer’s block is no fun. I’ll have to get over it …
And perhaps this blog post is the first step of getting over it. Only part of my inactivity on this blog  since September has been because of over-commitment. I’ve thought through several blog posts over the last two months, and in the past, when I’ve thought them through first, I’ve been able to sit down and let them flow. That automatic scribing hasn’t worked recently – until today, that is.
So maybe this is a good sign that I’m conquering the PTSD that I wrote about in April. A big step forward. Another sign will be if I am able to keep writing blog posts, so please check back from time to time if you want to know what’s up with me.

This is a very challenging time of year for Medicare “beneficiaries” – or, “sufferers” if you want to know the truth. It’s not that I’m not happy with the benefits – I am. But making sure we are in the right prescription drug plans (PDPs) is a challenge beyond belief. And, it can be very expensive – in dollars and/or time – if we don’t choose the right plan.
I’ll cut to the chase here: how are we supposed to know what coverage in the 31 PDPs in our area will cost? The government supposedly tells us on Medicare.gov, in a plan finder tool that’s probably not far off from what the new health insurance exchanges offer. But the information in the finder appears not to be correct.
How do I know? Well … I’m also shopping through ExtendHealth, which Bloomberg BNA uses to manage health care reimbursement accounts (HRAs) for retirees. We get enough of a stipend each year that, so far anyway, a big chunk of our out-of-pocket costs are reimbursed from the account. So far, so good.
ExtendHealth also is supposed to help us shop for plans when we first sign up for Medicare, and then annually during the open enrollment season. It’s necessary to shop again each year if you have medications that you take on a routine basis. That’s because the plans change each year, as do their formularies (lists of drugs they cover and the coverage level, or tier, that determines how much of the cost you will have to pay). So, you need to be aware of how much the premium has changed year-to-year as well as whether your medications are still on the formulary and in the same tier. The amount of your co-insurance or co-pay also can change from one year to the next. And, if your medications have changed this is your chance to make sure the new ones are covered and your plan will pick up as much as possible of the cost.
Here’s what I found out by shopping on both sites – it appears that the basic information about the plans on Medicare.gov is not always correct. Just taking one plan – the AARP “saver plus” plan – as an example, Medicare.gov says the premium is $22.50 per month. ExtendHealth says the premium is $15 a month. ExtendHealth says the deductible is $325; Medicare.gov says it’s $310. Who am I to believe? Well, ExtendHealth of course – they will pay the premiums directly from my HRA, so if they quote me the wrong price they might have to sell it to me for what they said it would cost.
I wish the complications stopped there, but they don’t. Now we have come to understand that the prices of the drugs are different from one plan to the next and among pharmacies – and even for two plans from one insurer at the same pharmacy. So, we are down to creating a spreadsheet that shows the retail cost at CVS, Walmart, and Safeway (important comparisons if the plan has a deductible, if the drug isn’t on the formulary, or if it’s in a tier with a high co-insurance percentage). A recent inquiry found that annual costs (premiums + deductible + copays/coinsurance) for one plan would be about $700 and for the same drugs at another plan could run almost $3,000. This is crazy!
I’m just scratching the surface here and my brain already hurts from researching to write about it, so I’ll stop. But before I close, I also want to mention another aspect of PDP coverage – mail-order pharmacies. Medicare.gov tells what the drugs will cost at the company’s mail-order branch or contractor – but so far I haven’t found that on ExtendHealth’s site. In most cases I’ve researched, the cost is less for a three-month supply  than it would be for the same medication purchased in 30-day supplies at a retail pharmacy. So, I’m writing down the retail pharmacy information from ExtendHealth and then turning to Medicare.gov for the mail-order information – which may be about as accurate as the premium and deductible data available there.
Mail-order is where we got caught when Robert signed up for Medicare last year. ExtendHealth was up front about the fact that the plan with the lowest premium plus drug costs had no mail-order pharmacy. We were concerned, though, that this plan offered a $0 deductible only if the Rx is filled at Walmart or Target – neither of which is convenient for us. One medication he takes is a controlled substance, for which he must get a paper prescription from the doctor each time it’s refilled. That can be a pain if you have to do it every month, so he asked about getting a 90-day supply. The ExtendHealth representative told him he could do that at the retail pharmacies. Not true. So, we’ve trucked off to Walmart once a month to refill his prescriptions. It can’t be called in, so we always have to wait.
This year we wanted to make sure that he has access to a mail-order pharmacy. To find out, and to find out which are each plan’s network pharmacies and preferred pharmacies (where the cost is even less), you have to read the fine print on the ExtendHealth site. Or, you can go to Medicare.gov – if you trust them to be giving you accurate information.
I could make a full-time job blogging about being a health care consumer. I’ve written a lot about health care since retiring from BNA, and unfortunately more than I have wanted to write on this blog as a health care consumer for the last year and a half. As a topic to parse and write about, this is the worst I’ve covered.
Give me taxes any old day!!

I haven’t exactly declared that Hazel Becker Editing & Publishing Services is open for business again. However, I have agreed to do a project for a neighbor and she has agreed to pay me for doing it.
I’m not sure what this means! I love being retired, and I really don’t want to change that. I’ve had no problem filling up my time with volunteer work-like things (like maintaining Kehila Chadasha’s website, which by itself could be a half-time job if I would let it!) and reading. I still work out, one way or another, every weekday and try to do active things on the weekend.
But when a neighbor whom I did not know put a notice on the Chevy Chase Listserv looking for someone to help her scan some family photos and arrange them into a book along with text she will provide, I answered and gave her a low-ball price. We’ve met twice, and I have just delivered a contract for her to sign.
I will learn some new publishing skills. I haven’t produced my own files to send to a publisher in more than 10 years, and the whole printing/publishing scene is different now. I hope I won’t have to invest all my earnings from this project in new software that I may not use very much – though I certainly would enjoy learning to use the software. But my first and primary learning task will be to find out what resources are available for having color photo books printed and what kind of files are needed. I’ve done investigations like this for my entire professional career, and I always enjoy the process.
I might even enjoy that part of the project, and learning new software, more than actually doing the work. I’m not a natural designer (ask my sisters!). But I’ve been producing publication layouts and touching up photographs for a long time. I’ll muddle through and hope I can muster up enough visual creativity to please the client.
I’m not spending a lot of time pondering the bigger meaning of agreeing to go “back to work,” even on this limited basis. For the moment, I’ll just take it as a good sign for my mental and emotional health.
This first project will give me the opportunity to see if I can work again without letting it add any stress to my retirement. That’s the goal. Wish me luck!

I’ve been thinking a lot about the advice Steve Buttry of Digital First Media gave to a group of journalists last month on how to begin thinking “digital first.” Following Monday’s embarrassing display of bad journalism, as every news source I consulted reported unsubstantiated and too-often wrong information about the shooting at the Navy Yard in Southeast D.C., we should all be thinking about it.
Monday was, as Jon Stewart said on Comedy Central’s “The Daily Show” the next day, the kind of day that 24-hour news media were created for: a day of “urgent, soul-crushing breaking news.” Days like Monday give good news organizations the opportunity to compete with each other on the toughest playing field around, one on which the landscape is constantly changing and new “tips” and bits of information are coming in all the time. But on Monday, September 16, I couldn’t find the good news organizations in among the others.
Much of what Buttry said in August at the Society of Professional Journalists’ convention (held jointly with the Radio Television Digital News Association and the National Association of Hispanic Journalists) was targeted more to print media and their online presences, and I don’t remember him speaking directly of cable news organizations covering a big, messy breaking story like Monday’s shooting. But I hope there were broadcasters in the audience listening because they needed to hear what he said as much as the newspapers, which I believe had as bad a showing Monday as most of the other news outlets I consulted as events unfolded.
I guess it’s just too tempting for them not to follow the lead, once one news operation reports that, for example, some first-responders were sent to another shooting at another D.C.-area military base. It’s too easy to dispense with our obligation to verify before publishing by qualifying our report with “someone said” or “another news operation reported …”
As Buttry said, “Don’t give up your standards of good journalism just to be first. You don’t have it first if you don’t have it right.” I’m writing about his advice out of context here; he was talking about online publications, not live television reporting. But I think the principles apply to broadcast reports as well as online reports published by newswires and online news outlets.
“The importance of verification needs to be stressed,” Buttry said. In the online context, he advises linking to your sources because “if you can’t find something credible to link to, it might be wrong.” So, even in the live broadcast context, think about what credible sources you would link to – “it will help you do better journalism.”
I suppose news directors of live broadcast operations would say they just don’t have time to check everything if they are going to beat the competition. In a 24-hour news operation there’s just not enough time to verify every tidbit we hear and also publish it as soon as it reaches us. But what good is it to be first if your information is wrong and you then become the source of all the other media’s wrong reports?
That goes for all the media I consulted on Monday. Everyone got it wrong. There were not three shooters. There was not a shooting at another military base in the D.C. area. Who knows how much the hype created by the 24-hour news media reporting unsubstantiated, incorrect information contributed to officials’ decisions to keep frightened workers in place, and children from their parents, for hours and hours after the lone shooter had been killed?
All day Monday, I heard Buttry’s words in my head: “The importance of verification needs to be stressed.” And “you don’t have it first if you don’t have it right.”
Thanks, Steve. And thank you to any journalist out there who takes time now to reassess. We all need to be thinking about this.

It’s been a while since I’ve done my normal exercise routine. I’ve had a few injuries that have kept me from working out the way I used to, and the last few weeks have included much time away – perhaps not a bad thing, considering the latest injury. But I’m ready to go back now … here’s hoping I can shed the pounds I’ve been gaining lately!
First, let’s dispense with the injuries. The major one was numbness and tingling, and sometimes outright pain, in my right hand. It built up over time, and finally I asked for a referral to physical therapy. Thanks to Jeff Robinson at C.O.R.E. PT, I think that one is mostly licked. Jeff also helped me recover from some strain in my left shoulder caused by who-knows-what. A lot of this is just aches and pains that come from using my muscles wrong. It gets bad when I ignore it for too long – and that’s what happened to my right hand. Just before we left on vacation Jeff and I agreed that we’ve worked on that about as much as we can. So, between that fix and the total rest I’ve given my left shoulder over the last three weeks, I’m ready to go back to lifting weights the way I used to.
Jeff also convinced me to have an xray and see what was wrong with my left foot, which I damaged walking across a ball field with Chewey the Friday before we left for vacation. He said he thought I might have a fracture in the fifth metatarsal, and indeed, that’s what it was. I’ve been wearing a “short boot” whenever I have to walk any distance, and with the orthopod’s permission we did some walking and hiking on vacation – permitted as long as I wore good hiking boots. I only overdid it twice but actually have not felt pain in that foot for quite some time. I’m ready for him to say it’s OK to exercise again … more than ready.
Meanwhile, Robert and I did a lot of stuff on vacation, though not the hikes we would have done otherwise. Yellowstone’s major sites have great boardwalks from which to view the geothermal phenomena (and they are phenomenal; I can’t wait to get my pictures posted!). Wildlife viewing was done for the most part from the car. I hobbled around the Getty Museum in L.A., and we’ve been using a handicapped tag so that I haven’t had to waste too many steps on parking lots. I’m looking forward to seeing the orthopod on Tuesday and getting permission to do weight-bearing exercise again.
I haven’t been very good about eating, though. And the diet my rheumatologist had me on to increase my bone density coincides with a six-month period over which I gained eight pounds. Admittedly, one or two of those were added during vacation – I just can’t stick to my calorie count on vacation! But most of it, I’m sure, is because of the two-yogurts-a-day instruction. The rheum-doc agrees that gaining weight at that rate isn’t good, so I’m back down to one yogurt a day and trying to get additional calcium in other foods. We’ll see how it goes in another few months.
I’m sure the month off weight-bearing exercise (except for boardwalks and a few mild hikes) hasn’t helped any. After I returned from Asheville I started going to the gym again, riding a recumbent bike so I wouldn’t aggravate any remaining injury to my foot. I burn more calories on the elliptical machine and in my very advanced aerobics/weight-lifting classes, though. I want to get back to normal.
So, here we go again – starting over again with a new weight-loss goal that has to be in sync with my bone density, high cholesterol, and kidney stone history. Managing my health can be complicated – but I’m determined to master it all!

Amazing, what a real vacation can do for the spirit! Despite two weeks of travel out west and now a short trip to Asheville via GSP (where there are nonstops and affordable fares, even considering the rental car) I am relaxed, resting and writing at the Comfort Inn while waiting for Gabriel to nap before I pick him up from school. I feel as though I’ve taken a turn in the road, and I’m ready to get on with things.

This is no small feat, after the last 16 months of living with Robert’s melanoma. I have lived under a shadow, knowing that his lesion was big, deep, and aggressive. His is not a case of “skin cancer lite,” a term I’ve heard recently in reference to basal and squamous cell carcinomas and melanoma in situ. I don’t always smile when people ask, “But they got it all, right?”

 

Yes, I’ve sighed with relief when there was no evidence of disease (NED) at the six-month and one-year marks knowing that the highest likelihood of recurrence is in that time. But the thing about melanoma is, you never know what little bits might be floating around in there waiting for the right time to make their presence known.

 

I have spent a good deal of time in the last year learning about melanoma treatments. I’ve had many vehicles for this education. The most important has been our periodic visits with Dr. Lipson, Robert’s oncologist, who is very good at explaining things in terms we can understand. I’ve also followed news of recent research reports and other articles that come up in my internet feed. Some of that information has been useful in blog posts I’ve written -not as many as I had intended, perhaps, and many partially researched but never followed through. I believe I am reasonably well-informed.

 

My most constant source of information has been the Melanoma Research Foundation’s patient information page (MPIP), a discussion forum frequented by people who are actively fighting the disease. This includes “newbies” (those recently diagnosed and their loved ones and caregivers) as well as people with later-stage cases. Some of the best-informed participants in the forum have had recurrences and/or more than one family member as patients. Some have been fighting melanoma for more than 10 years.

 

My habit over the last year has been to read recent postings at least once or twice a day, and some days even more often. I’ve learned things I needed to know, and I’ve gotten help there in learning how to manage life with melanoma. Sometimes I’ve contributed, though most of the posts are asking about situations we have not encountered and I have nothing to offer in response.

 

Reading the MPIP posts can have a down-side. Most of the people who contribute a lot there are dealing with later-stage disease, seeking advice about how to handle treatments and their side-effects. All too often there is news we don’t want to hear – of someone in late-stage, or whose melanoma battle is over. It can be demoralizing and depressing.

 

I’ve thought for a while that I needed to visit the forum less frequently, but honestly it was a habit that was hard to break. I actually received benefit from it for most of the last 16 months, but I’ve come to know over the summer that it was time to quit. I just couldn’t …

 

This is what the vacation did for me (among other things): it broke the trance I was in, focusing on melanoma so intently since May 2012. My visits to the MPIP were the last vestige, and going on vacation broke me out of it. We were busy and without reasonable internet for most of the trip, and I didn’t even think about it until I got home. At my computer Thursday, I went back to my old habits – but I knew I didn’t want to do it any more so I stopped. That felt good!

 

I don’t think I’ve abandoned MPIP completely. I’m sure my days of researching melanoma are not over – I still feel the need to keep up on the latest research and treatments, even though I’m not living under that same cloud. If we face a recurrence, I’m sure I’ll go through a lot of emotional upheaval and won’t be able to think straight for a while – that’s what happened last time. I want to make sure I have a good foundation if the dread disease comes back to visit.

 

Perhaps I’ll give myself time every week for deciding what I want to follow on MPIP. It may end up being the newbies, just learning about what their life may be like. I think I have some insights that may help some of them. And, if I’m really ready to move on to some other focus, I would like to be able to help others do that as well – when their time comes. This will happen for many of them – whether temporary or long-term.

 

In another post, perhaps also written from Asheville (or maybe not until I get home), I’ll try to collect my thoughts on what’s next for me. And I’ll try to get the vacation review posted. I got at least a few amazing photos I can’t wait to share!

 

So … on to … something else! More about my pondering of priorities in a future post.

 

     

     

 

Dr. Lipson told us today that the final subject in the Phase 1 GVAX melanoma vaccine trial that Robert went through at Johns Hopkins was enrolled two weeks ago. Around the end of the year or early in 2014, the researchers will have all the data from the study and will begin to write a report that they hope will be published in the middle of next year. Although it’s too soon for them to begin speculating about the results of the study, they are noting an increase in the immune response when they look at the biopsies taken after the final injection. So … something’s happening there! Whether it’s enough to provide a viable therapy for lots of melanoma patients remains to be seen – but at least it’s a start.
We talked briefly about the research presented at the June meeting of the American Society of Clinical Oncology. Researchers and product developers are making progress – particularly with therapies for Stage IV patients, those with active, advanced melanoma that has spread beyond the primary site and its surrounding area. Clinical oncologists are using ipilumimab (known as ipi and marketed by Bristol-Myers Squibb as Yervoy®), an approved therapy that works against cytotoxic T-lymphocyte antigen-4 (CTLA-4), to prolong the lives of melanoma patients with advanced or unresectable disease.
A number of researchers are studying products that work against programmed death protein 1 (PD-1). One study reported this summer in which BMS used ipi together with its anti-PD-1 antibody, nivolumab, appears to have produced  even better results than those reported for ipi when it was approved two years ago. Another anti-PD-1 therapy, lambrolizumab (under development by Merck), also has done well in Phase 1 studies, according to reports published in July.
Less publicized, Dr. Lipson said, is research that’s still in the proof-of-concept stage, looking for tests that could offer some relief to patients at Stage II or III who don’t have advanced disease and aren’t eligible for treatment with ipi or studies of anti-PD-1 agents. In a nutshell, here’s the problem those people (including Robert) face: no one knows whether they are cancer-free after their previous treatments, or whether instead there are some micro-metastases floating around in their bodies somewhere looking for an opportune time and place to grow. You don’t want to use toxic therapies to treat patients who don’t have active disease unless you know there’s a real threat their disease will progress. But so far, no one has come up with a test that says who should be treated and who can go on with life as before because the melanoma is gone.
This research doesn’t appear to offer the golden egg – a cure for metastatic melanoma, which could save the lives of so many people and save their loved ones the misery of watching them die. What it offers instead is real peace of mind for melanoma survivors who are cancer-free but have no idea whether the ugly beast will invade their lives again.
The costs of carrying out these studies are high, and funding for proof-of-concept research doesn’t come easily. But why shouldn’t a project like this receive attention from donors as well? After all, it offers very real relief to tens of thousands of melanoma patients who are already cured but don’t know it.