ASCO: Survivorship (Happy Survivors Day)

Today is National Cancer Survivors Day in the U.S. Not sure if that's a thing in other countries, but here, it's a chance to celebrate surviving.

(And as much as I try not to, every time I see the Survivors Day logo, I can't help but think of the figure skater Katarina Witt and the massive crush I had on her when I was a teenager.)

The folks who organize the day define a survivor as anyone who has received a cancer diagnosis, and is still living. You don't need to be in remission. You don't need to be 5 years out from hearing the news. If you were diagnosed yesterday, and you're reading this today, then you're a survivor.

I like that definition. In the 12+ years since I was diagnosed with Follicular Lymphoma, I have kind of wrestled with what other people should call me. Or what I should call myself. But I like that I can be a "survivor" while I still consider myself (and call myself) a "cancer patient."

Twelve and a half years. I've done some surviving.

It's interesting, looking at the ASCO presentations this year, that they don't always look at it that way, at least officially. They organize their presentations by cancer type -- breast, colon, blood, etc. But they also have a category called "Symptoms and Survivorship." As if half of that group is about having cancer, the symptoms, and the other half is about what to do when the symptoms are gone, the surviving.

I guess it's just easier to think about things in those terms. I mean, when you're dealing with the symptoms, you're not really thinking about what to do after they're gone. And when they're gone, you want to think about anything but the symptoms, right?

That might be a little harder for us with Follicular Lymphoma. I know I've spent a lot of time thinking about both things -- even when there are no symptoms, they're always in the back of my head. That little bump on my neck might be a mosquito bite. But it might not be.

I think there's some recognition of this in oncology, not just in FL circles. Palliative care is an example. If you know the term, you probably associate it with end-of-life care. Palliative care involves "making the patient comfortable" when there are no more treatment options. But even though that's what we often think of when we hear those words, Palliative Care is offered at all levels of a disease. The idea is to not just make someone comfortable in their last days, but to help with Quality of Life in all of their time as a patient.

It's not just about dealing with symptoms. It's about living as a survivor, no matter how many days it's been since diagnosis.

There were 362 presentations on Palliative Care at ASCO this year. They run the whole range of thinking about what Palliative Care means. One study looked at 8636 patients with solid tumors in a large oncology practice. Patients had to be referred to an outside palliative care specialist before 2017. But after a Palliative Care specialist was added to the practice, the use of palliative care went up 600%. That's not end-of-life care. It's care at every stage of patients' time with cancer.

Another looked at the more common type of Palliative Care, and studied leukemia patients. When palliative care experts were involved with their end-of-life care, they were more likely to get hospice care and have a better quality of end-of-life care. But even there, the researchers suggested that there needs to be more exploration of palliative care much earlier, when patients are still being actively treated, and the effectiveness should be measured in how Quality of Life is improved.

The bigger point here is that oncology seems to be willing to think more carefully about what it means to be a patient vs. a survivor vs. someone at end-of-life. It might be easier to put someone with cancer into one of those three boxes, because it's just easier to think about that way. But easier isn't better.

And we need to remember to think about ourselves in those more complicated terms, too.

The things that survivors need -- mental and emotional support, a good diet and lots of exercise, palliative care for ongoing side effects of treatment -- we need those things no matter where we are with lymphoma. We need to learn to deal with where we are now, but also where we want to be in the future.

That's not always easy. But it's our life as FL patients. I remember, early on after diagnosis, saying No to a lot of things because it didn't make sense to do them when I didn't know what the future would bring. I stopped doing that after a while, and I'm glad I did. I learned to live in the in-between. I learned I could be a patient and a survivor at the same time.

You should do. Take care of yourself and be vigilant the way a patient does. But also live your life like it's all in the past. It might be for a long time.