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Some background on melanoma treatments

For me, moving on from Robert’s active fight against melanoma Stage IIB into the nerve-wracking “watchful waiting” phase means keeping up-to-date on the latest research into therapies in use or under study for patients with more advanced disease. I’ll share some of what I’ve learned so far, and then I’ll try to keep you informed when I learn something new.
To understand how researchers are trying to fight melanoma, first you need to understand what cancer is. I’ll start with a short primer; click here to jump to the next section if you want to skip it.
Cancer Primer
You may already know that cancer is a condition caused when abnormal cells reproduce like crazy. In leukemia and lymphoma, this floods the blood or lymphatic system with abnormal cells. In other cancers, it causes tumors that not only grow in place but also have the capability to shed cells that travel to other parts of the body and grow a new tumor – the dreaded metastases. Although these tumors grow in a different part of the body from where they started, they still have the characteristics of the original tumor. In other words, a metastatic melanoma tumor growing in the lungs or brain (or wherever) has all the characteristics of melanoma – it’s just growing in another part of the body.
Also note the difference between “malignant” and “metastatic.” Malignant tumors have the capability to metastasize, but they don’t all do that. For example, some cancers are caught early enough to be eliminated before they actually send any tiny metastases out into the rest of the body. This includes the “melanomas in situ” that are Stage 0 or 1 (depending on size, depth, and whether they have ruptured or “ulcerated.”)
The question I keep asking is why the body’s immune system doesn’t attack these abnormal cells the way it does other foreign cells or bodies that don’t belong there. That’s also the question researchers are asking … and so far they don’t know the whole answer. What they do know is that cancer cells activate proteins that effectively turn the immune system off to the cancer cells. While a cancer patient’s immune system might continue to fight infection, it either ignores or doesn’t recognize the cancer cells.
This is a pretty sketchy primer. If you want more details, one place to start is the National Cancer Institute’s What is Cancer page. If that’s too technical for you, try the What is Cancer page on the American Cancer Society’s website.

Melanoma Therapies
Therapies used to fight melanoma are of three types:

chemical and/or biological agents designed to kill active cancer cells,

immunotherapies that stimulate the body’s built-in immune system to fight the cancer on its own, and

vaccines that target melanoma cells so that the body’s immune system will recognize and fight them.
According to the American Cancer Society, standard cancer treatments such as chemotherapy are not very effective against melanoma even though they are very toxic. Therefore, most melanoma therapies in use and under study today are immunotherapies or experimental vaccines.
The toxic side effects of chemotherapy drugs are the reason one physician we consulted cautioned us against agreeing to enroll in a clinical trial that has some study participants take cyclophosphamide. Researchers want to know if taking the chemo drug first to knock out lymphocytes that interfere with the immune response the vaccine is intended to create improves the vaccine’s efficacy. We weren’t faced with the decision about whether it’s worth the risk, however, because Robert was placed in a phase of the study that’s testing the GVAX melanoma vaccine without the nasty stuff.
The main melanoma treatments that have been approved so far are immunotherapies. Manufactured versions of the immune-boosting molecules interleukin-2 (IL-2) and interferon-α are used primarily against advanced disease, sometimes in combination with chemotherapy drugs. Whether used alone or in a biochemotherapy mixture, they can have severe side effects and often don’t prolong the patient’s life by more than a few months. About 10% to 20% of Stage III and IV patients treated with these therapies see their tumors shrink. Those odds aren’t very good, and given the bad side effects, these therapies aren’t generally used against Stage 1 or Stage 2 disease.
The newest immunotherapy approved to treat melanoma is ipilimumab, marketed by Bristol Myers Squibb as Yervoy® and known in the melanoma community as “ipi.” Ipi works by blocking the protein CTLA-4, which inhibits the immune system from attacking the melanoma cells. It has been shown to extend the lives of some patients with advanced disease, but it also causes severe gastrointestinal side effects in some patients.
All of these approved treatments are good at one thing: buying time for patients whose melanoma has advanced to Stage III (local or regional spread) or Stage 4 (metastatic melanoma, spread to other parts of the body). The real promise lies further in the future, with treatments designed to destroy the tumors themselves. I’ll write more about some of that research when I can figure out what it’s all about.
For now, I’ll turn my mind to the weekend, which has great promise: a lovely weather forecast, and a visit from my friend Sue. Then, next week, we go to Hopkins for the last visit of the clinical trial, including six-month scans. I’ll let you know the results as soon as I get them.

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Back to the blog

Sometimes when I take a break from blogging it’s because I’m busy. That happened in February, for example, when we went to Asheville for almost a week and then my sister and brother-in-law came for a visit. My two-week lapse earlier this month was for another reason—during that time I spent a lot of energy and brainpower (such as it was) dealing with depression. I’m pulling out of it now, and I hope that writing about it will get me all the way there.
Those who have read my last few posts might have gotten an inkling this was going on—one about post-treatment stress disorder, one about my search for support resources, and last week’s post about scanxiety. I hope this will be the last in a series …

The first symptoms I noticed were physical: in mid-March I was so anxious that I could feel my heart pounding when I got into bed at night. I did not believe what I was experiencing was a serious heart condition, but I wanted to rule that out, so I scheduled an appointment with my primary physician to have a physical exam. I also started taking my blood pressure almost every day to find out if what I was feeling came from high blood pressure.
The result is that physically I seem to be OK—the EKG was good, my blood pressure normal, bad cholesterol just a little high, good cholesterol way up there, liver and kidney functions fine. My physician told me she sees this a lot in cancer patients (and caregivers) who are reaching the end of treatment and told to just go on with their lives. It appears to be a form of stress cardiomyopathy, with symptoms similar to those women describe when having a heart attack—not necessarily the crushing chest pain that men experience, but palpitations, shortness of breath, difficulty sleeping, and fatigue (among others). According to WebMD.com, it starts when the sympathetic nervous system begins releasing a flood of chemicals, including adrenaline, that stun the heart and keep it from pumping properly.
Some people who experience stress cardiomyopathy need to be treated for anxiety, and some need to take beta blockers or ACE inhibitors to help their hearts return to normal function. I’m pleased to say that my condition hasn’t required any chemical treatment—this time. I think working through the problems in my head was the right way to approach that. Other steps I’ve taken include avoiding other stressful situations—work, for example!, and arguing. I also stopped pushing myself quite so hard at the gym, keeping my heart rate below “high” on the elliptical by slowing down whenever it got into the “peak” range.
I haven’t yet found (or started) a support group, but I have been in touch with a few people in similar situations. A few people from the Melanoma Research Foundation’s Melanoma Patients Information Page have contacted me, and that has been very helpful. And, I’ve made time for lunch with a very close friend whose husband has just finished treatment for the most aggressive form of prostate cancer.
Here are some other stress-reducers that seem to be working for me:

I’ve been reading—a lot! I’m a slow reader, so I say that only based on the amount of time I’ve spent doing it—between one and three hours each afternoon.

We’ve started doing some of the projects that need to be finished to make our house more livable. The stone mason has completed the drainage project intended to keep water from coming up in our basement when it rains. He also fixed the stone wall, rebuilt the alley wall, and put in a small patio—which I intend to make larger, now that I see how much I like it.

I’ve met with a gardener who will help me transform the gardens around our back yard, adding some shrubs and putting in a perennial garden for cutting flowers. This has gotten me back into my rock garden for some weeding, which is relaxing as long as I don’t obsess over it.

I’m ready to plan something several months in the future. We’ve looked into taking a vacation in the July-August-September timeframe. Now that I know what’s realistic (NOT Yellowstone this summer!), I’m ready to get serious about it. And, I’m determined not to be stressed about it. We’ll see how that goes …
I’m more relaxed than I was a few weeks ago, and I no longer feel my heart pounding the way it did in late March and early April. Progress – what more can I ask?

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Two kinds of scanxiety

In the melanoma community, and perhaps among groups with other cancers, there’s a condition known as “scanxiety” – the anxiety that patients and their loved ones experience waiting for results of CT/PET scans and MRIs performed to look for and measure active lesions. For some of us (like me!) the anxiety begins even before the scan is performed. Hence, I am writing about this 10 days before Robert is scheduled to be scanned at Johns Hopkins, the final appointment of his participation in a clinical trial of the melanoma GVAX vaccine.
There’s been some discussion of a different form of scanxiety on the Melanoma Research Foundation’s Melanoma Patients Information Page in the last couple of days. The wife of a cancer survivor whose recent scans showed he has no evidence of disease (NED) four years after his cancer was discovered related that they were told he would be scanned again in a year but that would be the last time. She wrote: “I understand with my head and I have a year to become comfortable with this … I know 5 years is a big deal, but I also recognize the capriciousness of melanoma.” Her husband’s case, others I’ve read about, and Robert’s were discovered when we didn’t know to look for it and where there were no outward symptoms.  Now that we know so much more than we ever wanted to about melanoma, we look forward to the scans to reassure us that it’s not wreaking havoc in the patients’ bodies somewhere. The kind of scanxiety I described at the beginning of this post comes with the territory – but we know there will be an answer soon. We’re nervous, we’re anxious, but it gives us a break from the constant, nagging wondering about what’s going on in there. We get to reaffirm the patient’s NED status.
Perhaps I would be able to handle the second kind of scanxiety more easily if Robert had had a smaller, thinner lesion.  As things are, though (as I responded to the post on the MRF board), I can’t imagine being told “no more scans.” Watchful waiting, the “treatment” regimen that consists of no treatment, is hard enough even with scans. It’s just not very comforting to know that 80% of recurrences are found by the patients themselves or by their physicians. I’m not sure that data set is broken out by depth of the initial lesion – if it is, I haven’t come across an analysis reporting it that way. Were the 20% all patients with big, deep lesions to begin with?
This discussion points out the uncertainty many NED melanoma patients and their families live with. There’s controversy about the scans, to be sure. The patient is exposed to a lot of radiation with any of them, and the contrast dyes sometimes used also aren’t all that good for you. Further, melanoma specialists addressing a recent MRF webinar expressed reservations about PET/CT scans because they produce too many false-positives, sometimes causing patients to undergo unnecessary procedures and even more anxiety. But getting to reaffirm periodically that s/he’s NED is a big part of many melanoma patients’ and their loved-ones’ mental well-being.
I’ll figure it out eventually. Now, back to learning to live with knowing there’s nothing more we can do. The only thing I know, so far, is that it’s better than having something more to fight. I’ll let you know if I come up with anything more substantial to write about.

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Looking for a new support resource

My friend John Schappi posted recently about his participation in a support group for Parkinson’s Disease patients, so I decided I would look again at support resources for melanoma patients. I started with what I knew – an online community that I’ve been relying on for information over the last 10 months. But as I’ve noted in recent posts, our experience with melanoma is in transition – from an active battle against the beast to one in which we get on with our lives. So, it’s time for something else – and my search continues.
The resource I’ve been using, Melanoma Research Foundation’s Melanoma Patients Information Page, is the most active melanoma community I’ve found so far. Patients and their loved ones are online a lot there, and some of them are quite experienced in researching and answering questions. The active community includes some multi-melanoma survivors/families and patients across the spectrum of melanoma types. (Patients with ocular melanoma have a separate board on the MRF site, so we don’t read much about melanoma of the eye on the main board.)
A lot of patients with “no evidence of disease” (NED) and their caregivers “check in” from time to time on the main MPIP board to share their good news about recent test results. However, as one very active member of the community (who goes by the screen name Janner) noted recently, the main board attracts people who are new to melanoma and are seeking information from experienced, active melanoma warriors – the other primary group on the board. By and large, as Janner said, long-term survivors who have been treated and moved on aren’t on the site much, and the bulk of the traffic (posts and comments) comes from newbies and patients who are in active battles against the disease. As she said, you can get a pretty skewed view of life after melanoma treatment if all you look at is posts from people in active war with the disease.
I’m ready to move on from MPIP (at least for now), but I think I need something to replace it. So, I’ve been looking for another resource. Here’s what I’ve found so far.
WebMD also sponsors a Melanoma/Skin Cancer Community, but it is not nearly as active as the one offered by MRF. WebMD’s staff monitor the board and try to offer helpful information, but they are not schooled in melanoma and appear not to be personally involved. That’s only important if you think people who are actually part of the community offer more helpful advice than a website’s employees who are there to help people use the website better. It’s the lack of ongoing discussions that keeps me from thinking this will help me move on.
Patients Like Me aims to create a lot of communities for patients with various diseases. The website has snazzy tools that chart your mood and symptoms if you take time to update, but not much other substance. This site serves patients with many different diseases, and the melanoma community there is pretty small (about 140 members) in comparison with MPIP. You can join forums and follow tags for other conditions, but it doesn’t appear to offer the same kind of active community I’m accustomed to.
My research also found a helpful listing of melanoma support groups on the website of the American Melanoma Foundation. It doesn’t list a live group in D.C. or close-in suburbs (unless you count Fairfax as close-in, which I don’t since it’s in Virginia and more than one county from the District line …), and it’s possible the website hasn’t been updated since 2006 – so not the most helpful. I looked at the online support groups listed on the AMF page, but neither of them looked promising.
I’ll keep looking, and will ask Dr. Lipson for suggestions about how to find a group when we see him at the end of the month. I also plan to post on the MRF community board to see if anyone else knows of a group or is interested in getting together.
Meanwhile, my stress level seems to be inching down. I’m sleeping better, and I don’t feel anxious when I go to bed anymore. Perhaps I can take care of this on my own (my preferred way). It’s certainly worth a try.

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PTSD?

I’m coming to realize that I’m going through a form of PTSD that is not uncommon for cancer survivors and caregivers. It’s nothing new – a literature search finds articles and papers about it going back at least to the 1990s. But it’s new for me, something I hadn’t thought about before. Oh my, will melanoma ever stop giving me opportunities to learn about things I have no desire to know?
Well, I suppose the answer to that question is “no.” Having put that aside, let’s get on to the subject at hand – post-treatment stress disorder. It’s something that affects both cancer patients and their caregivers. And, it’s not surprising, if you stop to think about it: as another member of the Melanoma Research Foundation’s melanoma patient/caregiver community pointed out, it’s like waiting for the other shoe to fall.
The particular form of cancer PTSD I’m experiencing crops up in exactly the situation Robert and I find ourselves in – transitioning from active treatment of his melanoma to the nerve-wracking “watching and waiting” regimen. I can imagine that being an active cancer warrior could turn out to be a piece of cake in comparison. That’s not to say it’s been easy (particularly for Robert), having surgery and then waiting for the skin graft to heal; figuring out what treatments were available and deciding which one to take; having copious amounts of blood drawn, getting vaccinated, having biopsies for the GVAX clinical trial – but at least we were doing everything we could. Now it’s time to accept that after the MRI and CT scan at the end of this month, the only thing we can do is “watch and wait.” In a way, it’s like watching North Korea: you know the capacity for bad things to happen is great, so you have to be keep an eye on them and hope you catch them before they have a chance to wreak havoc …
The American Society of Clinical Oncology (ASCO) has some tips for coping with the fear of recurrence. I’m working through them now, and you can see from this post that I’ve come to terms with the first one: “Accept your fears.” I’m still working on finding ways to manage my anxiety, and I’m hoping that, as the ASCO said, this fear really does lessen over time. As you can see, I’m writing down my thoughts and sharing them with the world, as suggested in ASCO’s admonishment not to “worry alone.” I haven’t decided yet whether to join a support group or talk with a counselor of some sort – it sounds like a good idea, but I’m not a joiner and have not generally found solutions from “talking” with a stranger.
Dr. Lipson, our oncologist, has given us a schedule for follow-up care – appointments with him every four months and skin checks with a dermatologist every three months. We’ll see him at Hopkins when we go for Robert’s scans, so the first appointment for follow-up at Sibley will be in late August. It’s time for a skin check, so I’ll get Robert to schedule an appointment later this month. Between appointments, I’ll check him out (!) pretty regularly and continue to kiss his head a few times a day …
I think we both qualify for the ASCO’s “healthy lifestyle” tip. With spring finally peeking around the corner at us every few days, I’m pleased to say that Robert has gotten back on his bicycle. He’s also signed up at a gym with our Medicare insurer’s gift of a membership in the Silver Sneakers program, and the gym has a pool to swim in when it’s too hot or cold to ride outside. We both eat pretty healthy diets, don’t smoke, don’t drink to excess.
The ASCO’s final suggestion is to reduce stress. I’m pretty sure the anxiety I’ve been feeling (yes, physically) is a form of PTSD, and I’m doing what I can to take care of that (see above). I’m scheduled for a physical exam later this month, so if there’s anything else going on we’ll know soon. Meanwhile, I’ll keep eating well, sleeping eight hours most nights, working out three or four times a week, taking it one day at a time, and writing this blog.
That should do it. Eventually.

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Realistic and optimistic at the same time

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

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Time for an adjustment

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

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What’s in a name?

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

Putting the ‘free’ back in freelancing

One item on a FastCompany.com list of “five ways to be a happier freelancer”* made me stop and think. The title of this bullet point, “Be free,” intrigued me.

Researchers agree that psychologically, the way that self-employment contributes to higher job satisfaction is through greater autonomy, freedom, and independence. … But in order to make this work for you, you have to exercise that right. Which of the projects you are working on right now are the ones you would do even if you weren’t getting paid? Is it possible to shift toward spending more time on those?

This is one of the business tips I give to new freelancers, and often money has something to do with it – for me, at least. When I started freelancing I decided I was not willing to do every single thing people would pay me for. I couldn’t bring myself to write free-association drivel and post it on the web just to put a blog post up. I wouldn’t cover local news I wasn’t interested in – I know other freelancers who can do that, but I wouldn’t find it satisfying. And, I wouldn’t write ANYTHING for $10 a post. My time is more valuable doing other things.

To me the greatest thing about freelancing is deciding what I’m going to spend my time doing. I would rather put time into doing web research on companies seeking freelancers than writing about fashion or home decorating. I would rather do a tutorial to learn new web production software than write product reviews.

Not everyone has the freedom I do to turn down jobs. But at some point, you need to ask yourself what else you could do with your time that would lead to more satisfying, better-paying gigs. What else could you accomplish in the time it takes to write 500 words for $30? How many queries could you send? Could you learn enough about a subject you know little about to write about it?

I decided to stop applying for gigs writing descriptive website copy when I was in the middle of a project that left me cold every time I finished working on a section of the site. I hated designing fill-in forms and no longer take on assignments requiring me to do this – unless it’s for an organization I belong to and someone begs with pitiful puppy-dog eyes.

The question of doing what makes you happy also means allowing yourself to accept low-paying jobs when you want to. I’ve enjoyed doing membership surveys for nonprofits in exchange for website software. I’ve written 1,000 words for $350 in exchange for the opportunity to get up to my elbows in a juicy data set. I’ve done interesting consulting projects for nonprofits so that I would have work samples to include in my portfolio. These were all assignments that made me happy. And, the time it took me to do them was better spent from a business point of view than dragging my feet and procrastinating to squeeze out deliverables I wasn’t proud of or struggled to complete.

If you hate what you’re doing and are not making very much money doing it, get a part-time job in a restaurant or bookstore. At least then you might get free food or books and would be better able to apply yourself to freelancing in the other part-time. 

 

*The article says it’s going to offer five, but only four are given.

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A bigger sandbox

Studies reported in the online version of Science magazine last week represent a breakthrough in researchers’ understanding of melanoma. Reading about them in Science didn’t mean much to me … so I embarked on a mission to learn. Perhaps I can write about this in a way that will help others understand, too.
First, I needed to understand more about DNA. Everyone has heard of it, and we know some of the language – genes carry the code, and chromosomes carry the genes. Younger folks probably learned more, but that was the extent of my understanding. When these reports started talking about the “dark matter,” they left me behind. Robert’s oncologist, Evan Lipson of Johns Hopkins University Hospital, helped me get started.
There are two kinds of DNA, he explained, not just the one we all know about – the genetic instructions that tell a cell what to do. This kind he likened to a manual for a stereo or for putting furniture together: “put part A into slot B.”
The actual instructions make up a very small portion of the DNA, about 1%. The other 99% is what they call dark matter – and this Dr. Lipson likened to “the instructions for the instructions.” For example, he said, “make sure you have a screwdriver and a wrench.” Although these instructions make up the bulk of the DNA, for the most part they have been dismissed in the past as “junk,” according to an article in the Harvard Gazette. All cancer-causing mutations found in the past have been in the instructions, not the dark matter.
The new studies found mutations in the “TERT promoter” area of DNA in 50 of the 70 melanomas examined. The TERT gene carries instructions for producing an enzyme, telomerase, that can make cells virtually immortal and has been found “overexpressed” in cancer cells, according to the Harvard publication. The “promoter” region is located near the gene and acts as a control point to tell the gene whether to perform its function. It’s possible that  mutations in the TERT promoter area cause the gene to over-produce the enzyme – hence the description “overexpressed.”
Other genetic mutations have been associated with melanoma. The most prevalent one is of the BRAF gene, and a lot of the therapeutic research to date has benefited the estimated 48% of metastatic melanoma patients who have tested positive for this mutation. With the TERT-promoter mutation affecting about 70% of melanoma tumors examined in the recent study, the potential is there for this finding to lead to therapies that would help even more patients with melanoma.
It’s important to note that such treatments are a long way off. But Dr. Lipson agreed with my description of what this finding means for cancer researchers – that their sandbox just got bigger. “What they have showed now is that the components of that dark matter, which until now were not very well defined, may have bearing on the way melanoma progresses and the way cells are or are not controlled by the body. It becomes another potential target, another potential site of investigation for therapeutic intervention,” he said.
We’ll take every advance we can get.
To read more:

Science Express is at http://www.sciencemag.org/content/early/recent. The studies were announced in the January 24, 2013, issue.

The Harvard Gazette article about one study, carried out by researchers at the Broad Institute of Harvard and MIT, is at http://news.harvard.edu/gazette/story/2013/01/mutations-drive-malignant-melanoma/.

A New York Times article about the Broad Institute study and the other one, by European researchers, reported in Science Express is at http://www.nytimes.com/2013/01/25/science/new-mutations-discovered-in-melanomas.html?_r=0.