Tuesday, April 21, 2015

Follicular Lymphoma & Hope

The Leukemia and Lymphoma Society has put a few new videos online in the last couple of weeks. They tell the stories of lymphoma patients and, of course, how they were helped by LLS (and how viewers can help, too).

The first one I saw was about a woman named Yolanda, and it's an emotional one. She says the first thing she thought about was her husband and her son and daughter. There are a few tears in this one, and that's one of the reasons I like it -- she really conveys the emotions that come with a diagnosis. She calls cancer a "dirty word," which I love. Yolanda received R-CHOP, and she raises money for LLS through a Light the Night team.

One thing I didn't like about the video, though, was some of the implications. She mentions that she was diagnosed at stage 4. Now, given that she doesn't give a grade, it's hard to know if she had a particularly aggressive form of FL. She also mentions that she is coming up on the 5th anniversary of her remission. That matters, too. Both of those things (stage 4, and 5 years in remission) don't really mean the same thing for FL as they do for most other cancers. Because Follicular Lymphoma is systemic (that is, the cancer cells travel all over the body), stage doesn't really matter as much as it would for other cancers. Grade would make more of a difference. Same with the 5 year remission. For many other cancers, that anniversary means a drastically smaller chance of the cancer coming back. Not so for Follicular Lymphoma.

The other video was about a man named Jeff, also diagnosed on the young side (51), and who had his family to think about. He went in for a his annual check-up, found a lump under his arm, and was diagnosed with FL. But what he has to say is this: "My diagnosis was Follicular Lymphoma. And what that basically means is, there is no cure."

To me, that second video sends a very different message.

I'm not saying the LLS is being dishonest in the first video. I understand that their job is to get people to donate money, and there's kind of a conventional story that gets people to do that: Young person, bad diagnosis, successful treatment, things look good, you can help too. They sell hope that way.

But to me, that second video gives us a much more realistic version of what hope is, at least for those of us with Follicular Lymphoma.

Jeff goes on to talk about reading everything he could online about FL, and how he found the LLS, and read about the research they did. He goes on to talk about how he was inspired to raise money for research.

His wife says, "This is going to sound odd, but this is the most exciting time to have cancer." Why? "Because the innovations and the treatments are just through the roof....To see that gives me tremendous hope that, in the next five years, they're going to come up with something for my husband."

And that sums things up pretty well. In fact, her two sentences can sum up the entire Lympho Bob blog, all 1000+ posts. I should stop writing and just set up a web site that says that: "This is going to sound odd, but this is the most exciting time to have cancer, because the innovations and the treatments are just through the roof. To see that gives me tremendous hope that, in the next five years, they're going to come up with something for me and other Follicular Lymphoma patients."

Maybe it's those darn numbers in the first video that bother me -- stage 4, 5 years. Numbers fix things in time.They seem so exact. I'll take the not numbers, the possibilities, the future, the hope. I've learned to live with the uncertainty. With uncertainty, you're much less disappointed.

It all reminds me of a poem by Emily Dickinson:
“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all - 
For me, hope is the thing without numbers. 
And the rest of that poem holds true.


Jackie said...

Great article and love the poem. Bob, what grade was
your fNHL? Have you had any treatments? I was dx with Stage 3/4 (had 2 bone marrow biops. but no lymphoma was found in either; however my onc suspected I may have had marrow involvement) grade 3a. I've always been a bit confused about grade 3a because from what I've read it behaves just like grade 1, so why not say I'm a grade 1? Anyway, it's been over 8 years for me. I had 6 rounds of Chop-R and 2 years R-Maintenance...been in remission ever since.
I love your blog. Keep up the good work. Thank you

Lymphomaniac said...

Hi Jackie. Thanks for reading.Grading is a little confusing. Lymphomation.org has a pretty good explanation of it: http://www.lymphomation.org/grade.htm

Basically, the higher the grade, the more large cells, and the more (potentially) aggressive it will behave. Potentially, but not always. Which is confusing, and why some experts think it's not all that useful in guiding treatment decisions. It's a pretty basic way of classifying the disease, since it relies on looking at cells in a microscope. There are so many other, deeper ways of looking at the disease now that will tell the onc more.
More importantly, 8 years! Woo hoo! Keep up the good work yourself.