The Assertive Cancer Patient

What the World Needs Is More Cancer Blogs!

According to Technorati, there are already 4,180 blogs about cancer (and more every time I check).

But surely that’s not enough. Not when you consider that some 200,000 women are newly diagnosed with breast cancer (my first cancer) every year in the United States, and some 60,000 people are diagnosed with melanoma (my second cancer).

So, in order to help increase the number of cancerites who are online, blogging their little hearts out, and dishing up the love, laughter, and bad cancer jokes to help each other get through this most bizarre and frightening of disease-experiences …

I will be teaching a couple of workshops at Cancer Lifeline in Seattle this fall.

The first is a two-hour workshop on cancer and blogging. During the first hour I'll talk about all the different reasons people blog (yes, I will be outing my friends and favorite bloggers) and the joys of blogging, and introducing some blogs that folks might want to be reading. During the second hour, I will be walking participants step-by-step through the process of setting up a blog. That workshop is Oct. 6, a Saturday, from noon to 2 p.m.

Then, starting Saturday, Oct. 13, I will be leading a six-week writing workshop that is only for people with metastatic cancer. Some of these folks may decide to launch blogs, but we’ll be doing other kinds of writing as well.

If you want to take part in either of these free workshops, contact Cancer Lifeline.

@ Jeanne Sather 2007.

Melanoma Means Better Sun Protection

Now that I’ve had a melanoma removed, I’ve developed a new interest in sun-protective clothing, sunscreen, and other ways to guard my skin from the sun.

Of course I’m also aware that, at age 52, most of the damage to my pale, freckled skin has already been done. No matter what I do now, new melanomas and other skin cancers may well pop up in the near future.

That’s why I’ll be seeing my dermatologist every three months for a full-body check.

This doesn’t mean I don’t step outside unless I’m wrapped head-to-toe in a burkha, complete with sunglasses and a parasol, I still need a little bit of sun exposure in order for my body to make vitamin D, and my dermatologist agrees that I don’t need all the cover-ups unless I am in danger of a burn.

Still, I predict that for many Americans who have been casual about sun exposure in the past, this will be the summer of special protective clothing, more careful reading of sunscreen labels, and a new interest in self-tanners, which give a glow without the skin damage.

Oh, yeah, one more thing: I asked my friend Teresa, the Cheeky Librarian, who has done a truck-load of research on sunscreen and related topics on my behalf, to write a post on why she has to avoid the sun, post-cancer treatment.

Teresa also reminded me that people who have had radiation therapy are supposed to avoid sun exposure to the radiated area. Now, I've had radiation therapy three times (chest, upper right arm, and spine), and I don't recall any of my doctors telling me to stay out of the sun. Go to Teresa's post for the documentation on this one.

The reason there is a Ninja Librarian

Also, if you are on chemo, ask your doctor if you should be extra careful about sun exposure. Some types of chemotherapy make your skin especially sensitive.

Self-Tanners--a Safe Alternative to the Sun

Sunscreen and Rising Melanoma Rates

Melanoma Madness: Tanning Beds

Melanoma Girl Buys THE SHIRT

More to come.

@ Jeanne Sather 2007.

Melanoma Girl Buys THE SHIRT

Having had one bout with melanoma, and hoping to avoid another, I have suddenly become avidly interested in the whole issue of protecting my skin from the sun. The carelessness of my 20s and 30s is long gone.

(It may be too late, but, hey, that’s how we learn, right? From experience. I have no illusions that my story will influence younger people to cover up in the sun—they’re still in that “nothing bad can happen to me” stage.)

This summer I ordered a UV-protective Soltex Big Shirt from the Sahalie catalogue. The $39.50 shirt promises to deflect 95.8 percent (do you ever wonder how they get such precise measurements?) of all UVA and UVB rays. One feature I like: the collar flips up in stages to give more coverage on the back of the neck. Since my hair is very short right now, I need this feature.

Even though I bought the shirt, and I plan to wear it, I’m not convinced that I really need a special garment designed to protect me against the sun.

The fact is, I have never gotten sunburn or sun exposure through my clothing. If I had, I would have freckles in those areas, which I don’t. So I think, despite the hoopla over these protective garments, that wearing my plain white cotton shirt as I always have in the past would be good enough. (Although news reports say denim would be better.)

When I am in Hawaii I also wrap myself in a lava lava once my legs have had enough sun. Plus a hat and sunglasses, of course.

When I’m home in Seattle I don’t need this level of coverage unless I am on the beach, or on the water (sadly, I’m not dragon boating this year), or out for a long hike.

I do think, however, that covering up when I’m going to be outside for any period of time is a safer alternative to sunscreen. The fact is, I need to read this list and then go shopping for the best sunscreen I can find, one that actually does protect against the UVA rays that cause skin cancer. (Most brands do not.)

So, here’s my skin safe plan for the summer:

1.) Find a good sunscreen. Apply sunscreen on days when I’m going to be outside for more than a few minutes. Apply it when I’m getting dressed, to allow it time to work, and apply LIBERALLY, even though I hate that gooey feeling.

2.) More importantly, wear protective clothing—my big shirt, hat, sunglasses, and light cotton pants.

3.) Much as I love baking in the heat, I’ll moderate my sun exposure, even when wearing all of the above. I don’t want to find another one of those “suspicious lesions” on my body.

4.) But I won’t obsess about all of this, after all, we all need some sun exposure in order to make vitamin D.

Sun protective clothing:

Solumbra

Coolibar

Solar Weave

Stingray



Yet again, the research for this post was done by my favorite librarian, The Cheeky Librarian, who always covers up in the sun.

@ Jeanne Sather 2007.

Melanoma Madness: Tanning Beds

I'd kind of forgotten about tanning salons and tanning beds in writing these posts on skin cancer, since I've never gone to a tanning salon.

And with my skin, I shouldn't.

But a reader in Australia reminded me about the hazards of tanning salons, and sent me a link to a story in The Age.

According to the article, someone like me with fair skin is not allowed to use a tanning salon under the voluntary code now in effect in Victoria, the state that includes Melbourne. In other words, employees are supposed to turn me and the rest of my pale, freckled tribe away and refuse to let us use the facilities.

The article doesn't discuss compliance rates--how many folks at high risk for melanoma are slipping through the doors and into the tanning beds?

However, Victoria's Cancer Council wants more regulation of the industry and for the voluntary code to become mandatory.

The article also reports some scary statistics, including research that estimates that regular use of a tanning salon can increase melanoma rates by up to 75 percent. It also says dermatologists are reporting cases of melanoma clearly linked to tanning salons.

Somehow I don't think the Tanning Tribe is going to be swayed by this information. It's not that people are stupid, but maybe they are in denial, and don't think it can happen to them?

Read:

Solariums face tighter rules over skin cancer fears

Here’s an Irony We Can All Appreciate: Sunscreen May Be Responsible for Rising Melanoma Rates

So now that I have melanoma, can I round up the tens of thousands of people who are diagnosed with this dangerous cancer every year in the U.S. and bring a class-action suit against the sunscreen manufacturers who mislead us?

After all, they claim that sunscreen protects against skin cancer. And that is just not true.

First, consider this—All sunscreens are not created equal: You need a sunscreen that protects against ultraviolet-A (UVA), which causes cancer and wrinkles, not just ultraviolet-B (UVB), which causes sunburn. Today’s SPF ratings measure UVB protection—not good enough.

Read:

Limit child’s exposure, despite improving sunscreens

If you want to compare sunscreens, here’s an article on a new database for comparing the safety of sunscreens (link included).

Remember when they used to call it sunTAN lotion? “Tan, don’t burn, get a Coppertone tan!” I even remember the tune!

Well, use of suntan lotion (now called sunscreen) has actually contributed to rising melanoma rates, according to Mother Jones magazine. The logic makes sense.

Read:

Mother Jones article on Sunscreen Scam

And the good news just keeps on coming! A chemical used in some sunscreens may INCREASE your risk of skin cancer:

Sunscreen cancer risk

Another story on same topic:

Do chemicals in sunscreens make them unsafe for kids?

And, finally, here is the unintentionally funny page on sunscreens from the National Institutes of Health, with an exact recipe for how much sunscreen to apply to each body part.

The government, however, hasn’t been keeping up with this hot topic: the page was last updated in 2002.

MedlinePlus page on Sunscreens

The research for this post was done by my favorite librarian, The Cheeky Librarian, who always covers up in the sun.

@ Jeanne Sather 2007.

Self-Tanners--a Safe Alternative to the Sun

When I was a teenager, I hated my skin. When everyone else was getting a summer tan, I was freckling and burning. And then peeling.

So one summer I went to the drugstore and bought a bottle of self-tanner. Coppertone, I think it was. I came home and applied it in the bathroom when no one was around.

You can probably guess the next part: Within an hour or two my skin was orange. The color was uneven and streaky. My knees were an especially lurid shade of orange, as were the palms of my hands, because I forgot to wash them with soap after applying the stuff.

My mother, never sensitive to the foibles of teenagers at the best of times, was livid. She sent me back to the bathroom with orders to SCRUB IT OFF, which meant scrubbing off the top layer of my skin, which I did with a scrub brush meant for the bathtub and some strong soap.

Not surprisingly, I have not been tempted to repeat the experiment until this summer. I've come to accept the limitations of my skin. I actually like my freckles now. But I like to get a bit of color at least, even if I'm not going to get the kind of tan my darker-skinned friends (and my older son) can achieve without much risk of skin cancer.

And since I've had melanoma, I'll be getting less sun exposure this summer than ever before.

Which brings me to the new breed of self-tanners. I bought one a few weeks ago, and I love it.

I bought a combination body lotion and self-tanner (Banana Boat's EveryDay Glow "Hint of Color" for medium skin) that you apply for several days before you see results. Then you reapply it either daily or every other day to keep the color going.

Two great things about it:

The color matches the color of my skin when I have a light tan.

Because you apply it every day and gradually build up the color, there are no sharp color lines or streaks.

One caution:

The color from a self-tanner is not protection against the sun, so you still need to wear sunscreen or cover up when you're in the sun.

I haven't heard of any problems with these products (as far as I know, none of the ingredients causes cancer), but if you know of any and want to rain on my parade, shoot me an e-mail and let me know.

@ Jeanne Sather 2007.

The Break Continues!

For those of you who are following The Saga of Jeanne's Arm, you'll be happy to know that I met with the lovely Dr. Lee today to go over the plethora (isn't that an awful word? Used it just for that reason) of MRIs and other scans I underwent last week.

The good news is: the spots in my right arm that looked like cancer to the folks who read the MRIs did NOT light up on the PET. That means they're not cancer.

That tidbit of info, combined with the fact that The Bone Guy thinks that the bone marrow in my arm is irritated from overuse, and the fact that the pain is getting better, not worse (as it would if it were cancer), means that things are looking good for my right arm.

I'm still wearing the brace, taking pain meds when needed, and trying not to use my arm too much (tough when you're a gardener). And I'll go back to see The Bone Guy in six weeks for another X-ray and consultation.

So that made me happy, although I expected it (except for the bit about there being no cancer in that bone--I figured I had a small met there).

Then we discussed all the other scans, which we are using to watch my bone mets and make sure they don't get too frisky while I'm not on any kind of systemic treatment (i.e., the long-awaited, long-anticipated BREAK), and there was one that is looking pretty "hot," a 9-something in the language of PET scans.

Now, Dr. Lee is a pretty calm guy. Not an alarmist, I would say. And he's getting to know me. So we dug around in my records from three or four different cancer centers to find other PETs that referred to this area, and sure enough the spot isn't new, but it is hotter than on the last PET I had. But we're still not panicking or talking about treatment yet.

First, Dr. Lee says, let's have the guy who read the most recent PET get a copy of the one before (from a different cancer center, so all we had was the paper report, not the scan itself) and compare them. "Anyway, it might be a typo," he says.

And--get this--he says to me, "What DO YOU WANT TO DO?" That's my kind of doctor.

I thought about it for a minute, and then suggested repeating the tumor marker, but no hurry.

So we'll be taking a leisurely approach so that my break can continue. Repeat the tumor marker in two weeks and see Dr. Lee again in three. And if this spot really is one that might cause me harm--you know, like another broken bone--then we'll treat it. I think I'll go for radiation rather than systemic treatment (chemo) so that my chemo break can continue.

But at this point, I'm not convinced that will be necessary. Wait and see and enjoy the summer--that's the new philosophy around here.

@ Jeanne Sather 2007.

A Day Lost, A Day Found

This morning I woke up, firmly convinced that it was Saturday.

When I was checking e-mail, my computer shut down and had to be restarted. When the screen came up again, it said that it was Friday.

That's wrong, I thought, and went into the "date and time" and reset it to Saturday. But then I went out front and saw all the neighbors' trash cans sitting on the curb. Our trash day is Friday.

I was confused at that point--a truly frightening, am-I-going-crazy? kind of confused, and I called my friend Laurie on her cell to ask her what day it was. I knew Laurie wouldn't laugh at me, or if she did, she would be laughing with me.

Laurie confirmed that today is indeed Friday, and thus I have gained a day. All day yesterday I went around thinking it was Friday--not quite sure how that happened, except that the first half of the week was extremely stressful.

So now, rather stupidly, I can't reset the date on my computer without locating and re-installing some software. Of course, I don't know where the disks are. And that sounds like too much work for my poor brain.

I probably won't get to it unless it really messes up my blogging efforts. Then I'll have to do it.

So, for me, today is still Saturday.

@ Jeanne Sather 2007.

Hospital Sues Bloggers

This is a really interesting one: a hospital in Paris, Texas, has sued a blog that it claims has defamed the hospital and also released confidential patient information.

The blogger or bloggers are apparently publishing their blog anonymously, according to a report in The Paris News, and a judge has ordered an Internet service provider to disclose the names and addresses of the bloggers.

Apparently, the bloggers accused the hospital of criminal wrongdoing, including Medicare fraud. The newspaper story said that hospital employees provided information to the bloggers, which is the basis of the claim about releasing confidential patient information.

So this is where it gets interesting. Is the blog uncovering wrongdoing by the hospital? And is the hospital retaliating by bringing the suit? Will the blog be protected by the First Amendment, as other publications are?

It doesn't seem to me that the claim of releasing confidential patient information should apply to the blog. If anyone was in the wrong there, it was the hospital employees, but they may be protected by whistle-blower statutes.

Defamation cases can be sticky though. Truth, of course, is a defense. If the story or stories on the blog were true, the hospital can't win a case for defamation, if I remember my journalism law courses from 20-plus years ago correctly. However, the hospital could easily bankrupt the blogger and put him or her out of business.

And of course opinion is protected by the First Amendment ... I have to admit though, many of the blogs I read dangle pretty far out on the end of the limb in expressing their opinions, and I probably do as well.

That's the joy of blogging.

Personally, lawsuit aside, I hope the blog stirs up an investigation into the business practices of the hospital, Paris Regional Medical Center.

Check out the blog: The-Paris-site

From a quick visit, it appears that various people have used the blog to complain about the hospital--about working conditions, medical care, and so on. If that's the case, I think there are precedents that say the publisher of the blog is not responsible for the opinions expressed by its readers and commenters.

I need to look this up. Anyone remember the case I'm thinking of? Seems to me it was AOL.

@ Jeanne Sather 2007.

Carrots for Breakfast

This is what I ate for breakfast this morning: fresh baby carrots from my garden, just rinsed under the hose. I ate them outside as I did my usual morning putter in the garden.

You may notice that the carrots are different colors: red, white, yellow, and orange. That was something new this year—I bought a packet of seeds called the “carrot rainbow blend” from Ed Hume.

I’ve been blogging quite a bit about gardening, because gardening is one of the things that keeps me sane and happy during this crazy life with cancer. For me, the benefits of gardening are exercise, stress reduction, and delicious, nutritious food.

More on gardening.

Carrots and Cancer
And then there’s the whole carrots and cancer issue. Actually, it’s not much of an issue. There’s plenty of evidence that carrots help reduce your risk of getting various types of cancer. So along with that “apple a day” you might want to add a carrot or two a day to your diet.

It’s not clear that carrots help prevent cancer recurrence, but good nutrition is still important—perhaps even MORE important—for those of us who already have cancer.

Carrot Component Reduces Cancer Risk

A Carrot a Day May Keep Cancer at Bay

Vitamin A May Help Keep Gastric Cancer at Bay

@ Jeanne Sather 2007.