My Blood Cancer Pet Peeve

I want to share my blood cancer pet peeve with you. A pet peeve is one of those little nagging things that really aren’t all that important, but have a way of bugging you anyway.

Maybe “pet peeve” isn’t the right way to put it. Because maybe it’s not such a little thing. It’s complicated, as you’ll see.

Not just one disease

My pet peeve has to do with celebrities who are diagnosed with certain blood cancers. When they do announce the diagnosis, it’s very often announced as “non-Hodgkin lymphoma.”

Here’s why that bothers me: there isn’t really any single “non-Hodgkin Lymphoma.” According to experts, such as Leukemia and Lymphoma Society, there are more than 60 different sub-types of NHL. They can vary widely.¹

Some, like follicular lymphoma, the type I was diagnosed with, can be very slow-growing.¹

FL patients who “watch and wait” after diagnosis can go for months or even years before they need treatment.

On the other hand, a sub-type like burkitt lymphoma can be so aggressive that tumors can double in size in 24 hours.² That’s a whole lot different than waiting years before treatment is necessary.

It’s even worse when the media outlet who is reporting on it tries to be helpful and does something like provide survival statistics for NHL. These are usually an average of the sub-types, and don’t tell a patient anything about their own sub-type.

Looking for inspiration

So why is it a pet peeve when a celebrity announces their diagnosis as NHL?

I think many of us look to celebrities for inspiration of all kinds. And when we hear about a diagnosis, we want to know that they are OK, but also that we’ll be OK. A celebrity with an aggressive lymphoma who has successful treatment doesn’t do much for us with an indolent lymphoma.

It’s a missed opportunity for education.

I know I’m not being fair

Once, when I mentioned this pet peeve to someone, they told me that celebrities probably don’t give a subtype when they announce a diagnosis because their publicists want to connect to as many people as possible. Why label yourself as something that affects a few thousand people when you can label yourself as something that affects hundreds of thousands?

That’s a little cynical, though maybe there’s at least a little truth to it.

But more likely, it seems to me, is that when they’re diagnosed, they aren’t really thinking about being role models and inspirations for their fans. They’re probably thinking, like most of us, about their families, about treatment options, and about their own futures. Decisions about the details of an announcement and its effects on fans might come later, when the picture is clearer and their mind is hopefully more at peace.

My wish

Now, I want to be clear about something. I’m calling this a “pet peeve” because I don’t want this to be taken as criticism of the celebrity. I’m very deliberately not giving the names of the celebrities that I have in mind. I don’t want to criticize anyone in particular.

I have a rule that I pass on to other patients: there is no right or wrong way to be a patient with cancer. We make decisions that make the most sense to us at the time we make them. I would never tell another patient how to be a patient.

And that includes celebrities.

So let’s not even call this a pet peeve. Let’s call it a wish.

I wish that all of us have the strength and support to make the decisions that make the most sense to us and our loved ones, and that those decisions work out as best they can. And for those of who are in a place to advocate for others, through inspiration and education, may we do the best job we can, too.