Ribbons of hope

Today I'm feeling: Good.

Ran 3 miles this morning. Went harder/faster than I had in a while, certainly since I started the blog. It felt good. I was pretty pleased.

Sorry I haven't had much to say lately. Partly it's because there's just nothing new to report, and partly because I've been trying to stay busy. Keeps my head in a good place.

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To start, a joke. Not one from the online support group, but one of my all-time favorites:
What do you call Batman and Robin after they've been run over by a steam roller?

Flat man and ribbon.


I bring that up because I've been doing a little research on "support ribbons" for NHL, known as "ribbons of hope." You've seen them (maybe even wear one): the small lapel ribbons that show support for a particular cause or specific cancer. The pink ribbons for breast cancer are maybe the most common.

I was curious what "our color" was -- those of us with NHL. I found a ribbon online, lime green. Don't know why this is the color, but you'll notice a few things if you look at the link: one is that this is a ribbon for a bunch of other causes, too, including Lyme Disease, which probably makes the most sense. Also, you'll see that red is an alternate color for lymphoma.

I don't know who decides these things, if there's some central agency that decides on which causes get which colors. I'm pretty sure there isn't, because if there was, there wouldn't be so much confusion over who gets which color. Pink makes sense, I guess, for breast cancer, since it is a predominantly (though not exclusively) "female" cancer. Of course, there isn't anything inherently feminine about pink. (Did you know that before world war I, pink was the boy color and blue was the girl color? My students find that kind of thing just fascinating.)

So I wanted to know if it was lime green or red that I should be wearing. I thought maybe I'd get myself a new running shirt in that color. There are lots of places that use lime green as the color for NHL or for all types of lymphoma, including a site that offers hundreds of NHL-related gift items, my favorite being this line of "Lymphoma Sucks" t-shirts.

But then it gets tricky. Apparently, purple is the color for Hodgkins Lymphoma. Some people have put out purple items for all Lymphomas (maybe not knowing that there's a difference?). To further complicate things, the lymphoma society has a fundraising running team that wears purple.

So in my research, I came across a posting on a message board about this topic. One poster said that purple was the color that is used for all cancers, like if there's some event that tries to raise funds for cancer research in general. Another person who posted was offended because she has bought a bunch of purple stuff thinking it was for NHL. She wanted her color.

I understand the impulse. We all identify with colors -- national flags, sports teams, political affiliations. It's shorthand for who we are. So to be wearing the wrong colors can be frustrating, maybe even offensive.

It gets worse. The lime green/purple controversy was bad enough, but when the Lymphoma Society merged with the Leukemia Society, they went with the color red, since they're all technically blood-related cancers. Red had been the leukemia color, so some NHL people were offended that they were being lumped in with something else. The society started (unofficially) endorsing a red and white combo ribbon to signify both types (leukenia/red and lymphoma/white), but this bothered the purple and green advocates, plus the goldenrod yellow folks, since that had been in the Lymphoma color for some local chapters of the Lymphoma Society.

The Leukemia and Lymphoma Society national office actually held a special meeting to decide on colors. Since they also cover Mylenoma, they decided on a three-colored ribbon: gold, green, and blue, to represent the three cancers.

Six months later, they decided to reconsider the issue. It looks like they've settled on red; their official wristband is red, with the word "Relentless," which is kind of cool. But there are still lots of products out there in lime green, specifically for NHL.

I will say that I'm much more likely to find a running shirt in red than in lime green, so I should be happy about it all.

I'm going to research some more. I think whatever article I write on the topic will make a great sabbatical proposal: Visual Rhetoric and Representation in "Ribbon of Hope" Color Choices.

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One more quick thing:
Please be careful about what you read online about NHL and follicular NHL. There's lots of stuff out there that isn't exactly wrong, but it's misinformed or oversimplified.

Dr.C, the specialist, told me Monday that anything online is already out of date, meaning that advances in lymphoma research are moving along. Many treatments are still unproven, but in testing (like that cool vaccine thing). So information about treatments, prognosis, etc. means nothing. By the time I need treatment, there could and probably will be new options.

The other thing to remember is that follicular NHL is somewhat unpredictable. It grows very slowly, but can also speed up and even change forms. I'm in watch and wait mode for the moment. I read a post yesterday on the online support group from a woman who has been in watch and wait for six and a half years. The lymphoma hasn't progressed enough for treatment. Some do progress quickly, of course. But fNHL (as folliculr NHL is known) is notorious for waxing and waning: a scan shows progression of the disease, and then a month later, nodes have shrunk. My own CT scan from October showed an enlarged node in my chest at about 2.3 centimeters. The January scan showed it at 1.5 centimeters. Could be explained by the scans having been taken at two different radiology centers. Or it could have shrunk. My next scan may show it enlarged again. It's not enough to come to any kind of conclusion.

The point is, take what you can from WebMD or Wikipedia or whatever, but don't treat it as gospel truth.

This could be a long, long haul, folks. Above all, stay positive. I need that more than anything. And all of this has been a reminder to myself as much as to you.

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Check back Sunday afternoon. I'll have something interesting to tell you about.