Be a PEST

There has been a lot of Follicular Lymphoma research out there lately. The ASCO conference (American Society for Clinical Oncology) is coming up in a couple of weeks, and researchers are starting to give some previews of what they will be presenting. So my plan today was to get a head start on some of that and right about it today.

But this morning, I came across a really nice article called "I Am Not A Cancer Survivor, I Am A P.E.S.T.," written by Katherine O'Brien, a patient advocate for Metastatic Breast Cancer.

Metastatic Breast Cancer is a very specific type of breast cancer. I've heard a MBC patient say it is almost a completely different type. It's a stage IV cancer, and it is incurable. Patients who have it will need treatment for the rest of their lives.

Sound familiar?

I really connected with Katherine O'Brien's piece.

She's on her way to the ASCO conference (yes, I'm jealous), and she got her name badge in the mail. Because ASCO is such a huge conference, with lots of people there from the cancer world, name badges have ribbons on them to identify everyone's role. So when you meet someone, you'll see their name, but also something like "presenter," so you'll know this is someone who is presenting their research.

Katherine O'Brien's badge says "Patient Advocate" and "Survivor."

Again -- sound familiar?

She has no problem with the "Patient Advocate" ribbon. That's what she does -- help support other patients.

But the "Survivor" thing? She has some issues.

The term "Survivor" is a controversial one. Lots of cancer patients don't like it. I'm OK with it, personally. There are times when it seems like just making it through the day is something worth celebrating. To me, that's survival.

But I certainly understand that some patients don't like it.

For Katherine O'Brien, her dislike of it is tied to her having an incurable cancer. It's hard to think of yourself as a survivor when you know there is another treatment down the road. "Survivor" implies that it's all done with you. You made it through -- you survived.

I get it.

I usually refer to myself as a "Follicular Lymphoma Patient." I'm still seeing an oncologist 2 or 3 times a year. I know it's not over.

I like Katherine O'Brien's discussion of coming up with a name for herself. She settled on PEST -- Pragmatically Embracing Successive Treatments.

I like that it also embraces her role as a patient advocate. Sometimes we need to be pests -- it's the only way to help people -- to not stop.

Read the full article. It's worth it. Lots to think about.

The important thing, though, is that however you choose to think about yourself -- patient, survivor, PEST, or something else -- it's a term that lets you be who you are, and who you want to be, and encourages you to live your life in a way that makes you do the things you want to do.