Why Awareness Is Hard

Many of you have probably seen the recent news about the actress Jane Fonda. This weekend, she announced that she has been diagnosed with Non-Hodgkin's Lymphoma, and has begun chemotherapy, which she will be undergoing for six months.

First of all, and most importantly, I'm sure we all wish Jane Fonda an easy time with treatment, a successful outcome, and good health. We all know how it feels to hear those words, "You have cancer." And we all know how tough it is to deal with the day-to-day anxieties that come with a diagnosis and treatment. It's just not something anyone would (or should) wish on someone else.

Now, to be a little critical. As many of you know, I have a real pet peeve with people being "diagnosed with Non-Hodgkin's Lymphoma." I've read about 25 news article that describe Jane Fonda's announcement, and most also provide some background information about NHL. It's an attempt to be helpful. But to me, it's not as helpful as it could be.

Why? Because, in some sense, there is no such thing as "Non-Hodgkin's Lymphoma." Depending on who you ask, there are anywhere from 40 to 90 different types of NHL. Some are slow-growing, like Follicular Lymphoma,  where people can go years without needing treatment. But some types are very aggressive, like Burkett's Lymphoma, where lymph nodes can double in size with 24 hours. 

And some of the articles do make this distinction. But at the same time, they also mention statistics like the survival rate for NHL. That makes no sense to me -- how can you lump in the survival rate for FL with Burkett's or another aggressive lymphoma and have it mean anything? Who is that educating? 

Part of the issue, of course, is that Jane Fonda announced her disease as NHL, rather than as a specific subtype. And that's very common -- the actor Jeff Bridges did the same thing when he was diagnosed not too long ago. I can't be critical about either one of them -- they make the choices they make in dealing with the disease. We all make our choices, often in the same way. We aren't necessarily pubic figures, but we choose who to tell and how to tell them and how much information to give. People do things in the way that makes most sense to them, and they may not be the way I would do them. That's especially true in the days right after diagnosis, when everything is so new and scary and incomplete. I can't be critical.

But the larger lesson here is, this is Lymphoma Awareness month, and it's up to us to be aware. It's easy for someone else to read an article (whether it's about Jane Fonda or just about Lymphoma in general), and come away with an incomplete picture. It's up to us as patients to be aware of our own disease, and understand it well enough to use that information to help ourselves. For some (like me), that means knowing nearly every detail of the disease and its treatments, because for me, knowledge is power. But for others, that might mean knowing as little as possible, because all of that detail just creates more stress. Better to trust the oncologist to make the right decisions. And that's fine too. We make those decisions for ourselves.

But it also means that, for those of us who can, we pass along our knowledge and educate others -- we make others aware. 

From what I've read in her announcement, she seems very optimistic, and is not planning on letting the disease or her treatments keep her from doing the things that she finds important. That's another great lesson from all of this. Live your life.

Awareness is hard these days because there are so many sources of information, all competing for our attention. Some are great and helpful; some are horrible; many are incomplete. Being aware is a complex thing -- it's intellectual, but emotional, and social. Do what you can.