Transcript

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Four percent

Today is September 15th, World Lymphoma Day. At least it is if you’re listening to this podcast on the actual day it drops. And really, roughly about 80,000 people in the United States will be diagnosed with a non-Hodgkin lymphoma this year, and somewhere around 3,000 of them will have the kind that I have, a cutaneous lymphoma, and that works out to, eh, roughly 4%, right?

So I am just this minuscule percentage of what today is about, but I show up for it because it’s very important. Now 80,000 people, as I said, is a lot, and World Lymphoma Day exists to reach all of them at once, and that’s a genuinely hard thing to pull off. So somewhere north of 90 organizations, they’re across 50 some countries aiming one message at a disease that behaves differently in people who get it.

Why the numbers are soft

That’s medicine, right? And I’m talking about those numbers on purpose. So depending on which website you land on, the Lymphoma Coalition may have 83 members or 90 or 100. Some of that is websites getting updates on different schedules. Th- the reality is, the numbers for my disease specifically are soft for a more interesting reason, and that’s because cutaneous lymphoma comes in around 3,000 new cases a year in the US, and you’ll see that figure move depending on the source.

And part of why is that a lot of people who have this are currently categorized, if I use that word, under something else. They may be categorized with eczema, psoriasis, or dermatitis. And I talked about that a couple episodes ago and how long it takes to get diagnosed and why. And one consequence I didn’t get into is that you cannot count people if you haven’t found them yet, right?

So keep in mind as we look at these numbers that I say really are an estimate of a group that is likely larger than the number.

Know your nodes

But here’s what does hold. The message on World Lymphoma Day really is about, lymph nodes. Know your nodes. Check your neck, your armpit, your groin. It’s really been a, a kind of through line for years, and it works because most people with lymphoma, that is exactly how this starts.

But for those of us with cutaneous lymphoma, it’s not likely how it starts. Mine started as patches on my skin that looked like eczema. Now, nodes, as in enlarged nodes, are certainly part of the lymphoma I have, which is Mycosis Fungoides. If it progresses, it can move into the lymph nodes, so the campaign’s headline, their symptoms of, swollen nodes describes a stage of my disease that I am actively working not to reach.

And those graphics are a, a future rather than a description of my present, and I’m gonna use that future very carefully because if we can maintain my lymphoma where it is right now on the skin and no further, the future doesn’t include something worse, right? It doesn’t include that kind of spread.

Why the campaign is built this way

The reality is that whole concept, reaching the masses, is a very good way to experience a public health message. This campaign is right to be built this way. If you get one message and 80,000 new patients a year, you really want to write it for the majority, the target. Who is this most likely to apply to that falls into this space?

And rare subtypes are rare, right? No surprise. If they calibrated a message into this to the population that’s, less than 5%, it would be ineffective for 95% of the population. So reading a message written for the other 95%, that’s the position I’m in, and that’s really what the rest of this episode is.

It’s about what I do with that. So what I want to do is bring awareness to those of us who aren’t that ninety-five percent, right? Where it matters most for me has very little to do with spotting a symptom like a swollen lymph node.

The picture people have of cancer

So I’m gonna talk a little about the word cancer. Most people hear cancer and a picture appears. Hospitalization. Someone sitting in a chemo chair with a port. Someone losing their hair. Several brutal months, and it is terrible, and then it’s over. Most cancers are curable. It’s not to say they all are. There are plenty of terrible outcomes for people with cancer. But the picture is real for a lot of people, and it’s really the only picture we know is this sort of very dramatic, short-lived cure or no cure.

And for me, that’s– I’m not in that space, and for other people with the type of lymphoma that I have are not in this space. I have had mycosis fungoides, at least diagnosed, since two thousand and fifteen. I’m still working. I look fine. I will be in some form of treatment likely for the rest of my life.

There is no finish line where somebody rings a bell. Every part of this is normal for my disease, and none of it fits the picture many of us have of what cancer or lymphoma is.

Chronic cancer at work

And that gap can cause real problems. It can have problems at work, right? I talked about two episodes. I’ve had one about do you tell your boss and your colleagues, and then I had one where I talk about, you know, do I tell my clients in a client-facing role, what I say, how much I second-guess it afterwards. And what I didn’t really dive deeply into is why the conversation is so hard, and I think it’s because at least in the workplace, most employers run on an acute model of illness.

You get sick, you take leave, you come back, and really all of the forms around, you know, FMLA are built that way. The policies are built that way. And I’m gonna tell you something else. I think human empathy, human sympathy is built that way, and I think it has a shelf life. And chronic cancer like what I have breaks that model.

I’m not going out and then coming back, with a positive outlook on things. I’m here the whole time. I’m working. I’m taking off a lot of time for appointments threaded through every month, and there doesn’t seem to be an end in sight. And an employer who’s never encountered that really doesn’t have a template for it, so they reach for the one they have, and the one they have isn’t really, a great fit.

And that is an awareness problem. It’s not just the kind you solve with a, a graphic about lymph nodes. And awareness can’t solve things. Awareness just makes people aware of something and then invites them to do more. So you solve it, at least for, our audience, right? When enough of us describe what this actually looks like, that chronic cancer becomes a thing people have heard of before they meet one of us, which is essentially what I do on this show, besides connecting with people who are experiencing this themselves or have a loved one who’s experiencing this.

Navigating together — what a guide means for a rare disease

Now, this year’s global campaign is called Navigating Lymphoma and CLL Together. It’s about the challenges people hit across diagnosis, treatment, and survivorship, and about the role patient organizations play as a guide through them. And I wanna talk about the guide part because it means something different for a rare disease than it does for a common one.

If you are diagnosed with a common lymphoma at a reputable cancer center, there is a clear pathway. Someone’s seen your disease this month. There’s a protocol. You probably have a nurse navigator, right? That’s a standard next step most cancer centers have. For cutaneous lymphoma, the Cutaneous Lymphoma Foundation is a big part of that infrastructure.

They have a treatment center directory, and it can help for patients to find a doctor who have seen this before and treats it. There’s a nurses network, there’s a research award program, there are patient networking groups, and for a lot of us with this rare disease, that’s really the map for us, right?

Two kinds of awareness

The foundation’s strategic plan lists really two awareness goals side by side. One is raising awareness of cutaneous lymphomas. The other is raising awareness of the foundation itself, and they’re listed separately, I believe, because they do separate jobs. Awareness of the disease could be what gets a biopsy instead of yet another topical.

Awareness of the foundation is what really gets someone who’s, been diagnosed or is potentially facing this result from their diagnosis to that directory and to the resources available to them. Now, the plan also talks about that reaching people who are underserved and unidentified.

The people we haven’t found yet

There are people right now who have this and don’t know it. Some of them are being treated for eczema. Some have been for years. And a day when lymphoma is the loudest thing on the internet is one of the few ways to reach someone who doesn’t yet know to look for us. And the reason a small foundation gets to stand inside this global moment at all, is relationships that people maintain year-round. Membership in the Lymphoma Coalition, working with other lymphoma organizations having connections to clinicians, and none of that appears in September, but September is when it pays off.

And I see on Reddit, there are a lot of people who discuss this disease on Reddit threads for, say, mycosis fungoides or cutaneous lymphomas, and I see people come to those Reddit threads, and they are sharing their story of, “Hey, my doctor has taken a biopsy and thinks maybe I have this disease,” and they’re scared to death.

I was scared to death when I was diagnosed and I had a doctor who explained it to me. I didn’t have a doctor who told me, “Hey, I’m gonna do this biopsy. This is what I’m looking for,” and scared me to death, okay? So it’s really important that we recognize that there’s this whole group of people out there, and we wanna make sure that we serve those unidentified people, and awareness is a big part of that.

What awareness actually produces

Now, the part that I think could be important if I were listening to someone else say all of what I’m saying is, does any of this do anything, right?

So last September, for example, was an amazing month for the Cutaneous Lymphoma Foundation. A lot of people supported their fundraising efforts, all month long and really, throughout the rest of the year. But I want, I want to be specific about where that came from.

People with this disease gave money to support the foundation. So did a lot of people who’ve never had it. Somebody’s sister gave, somebody’s coworker gave. People gave because someone they love came home one day and told them about a diagnosis they’d never heard before, and they went and looked it up.

That is what awareness produces, a group of people who don’t have cutaneous lymphoma and decided to care about it anyway. For a disease this rare, that’s kind of the whole ball game, 3,000 people a year cannot fund their own research. We are not a large enough group to carry this by ourselves.

It only works when our circle is bigger than those of us diagnosed with the cancer. And you can follow it, right? Visibility in September turns into money. Money turns into research awards. It turns into these patient education programs that the foundation has. The foundation even has one-to-one support.

You can call and speak to a real human and ask questions and get answers and help, And there’s that directory that is current of where you can go for providers who n- who are experienced in this rare disease, and all of that turns into somebody getting diagnosed at an earlier stage than they might have expected, say, 10, 20 years ago.

The ask

So here’s where I ask you something, and first, I’m going to tell you why I’m not neutral in this. I sit on the board of the Cutaneous Lymphoma Foundation.

Fundraising is part of what board members are supposed to do, so this is me doing my job out loud, and it’s a job I want to do. Now, right now, the foundation is running the Cutaneous Lymphoma Challenge, and there is a board matching gift, and every dollar given during this month is matched one to one up to $30,000 while the match lasts.

And if you have ever thought about giving to this, today is the day it goes twice as far. And you can go to givebutter.com/cl-challenge-2026.

I will have a link to this on the Fine But Not Fine podcast site. But it’s Givebutter, B-U-T-T-E-R, if you’re trying to figure out if I said Givebetter or if I said Givebutter. Now, this, if money isn’t something you have right now, and for a lot of you, it isn’t, it’s okay. This disease is expensive. The economy, is probably not what a lot of us would call as ideal right now.

I totally get it. If you can’t give, that’s okay. But if you can and you want to, we would really appreciate that gift. Now, the Lymphoma Coalition is also running a pledge called No Patient Travels Alone, and you pick a challenge that you face during diagnosis or treatment or survivorship, and you share it, and that’s it.

That’s the whole ask. Somebody reads it and recognizes their own life in it.

Why I don’t wait my turn

Which brings us back to that, 4%, those 3,000 of us, right? I’m a small fraction of a disease. It’s a small fraction of cancer. On paper, that’s an argument for staying quiet, and it took me a while to understand why it’s the opposite.

Rare diseases don’t get attention by waiting their turn. They get it when the people who have them keep describing what it’s actually like until somebody outside their small percentage decides to care. That’s what today is for. That’s why I do this podcast. That’s why I serve on the Cutaneous Lymphoma Foundation board. That’s why I’m asking you to give your money, to give your time, and to share your story.

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Links from this episode

Give

• CL Challenge 2026 — board matching gift, dollar for dollar up to $30,000 while the match lasts

Take the pledge

• No Patient Travels Alone — World Lymphoma Awareness Day, September 15
• Navigating Lymphoma and CLL Together — this year’s global campaign from the Lymphoma Coalition

If you’re newly diagnosed, or think you might be

• Cutaneous Lymphoma Foundation
• Treatment Centers and Clinical Trials directory
• Building your healthcare team
• Contact the Foundation — 248-644-9014, info@clfoundation.org
• The Foundation’s strategic plan