10 Years

Today is my 10 year diagnosiversary.

I was diagnosed with Follicular Lymphoma 10 years ago today.

This also means that it was 8 years ago today that I started treatment with Rituxan, and I haven't needed treatment since.

I consider myself very lucky to have reached this day.

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10 years is a big deal for me. Soon after I was diagnosed, the statistics I saw about Follicular Lymphoma said the median Overall Survival was 8 to 10 years. So back then, I wasn't sure I'd even be here today. In fact, back then, if I had to guess, I would have thought that I wouldn't be.

But here I am.

That statistic doesn't really mean as much to me anymore. I know a lot more about what Overall Survival means, and how little any statistic about FL actually means for my individual disease. And I also know that Overall Survival for FL has almost doubled since I was diagnosed -- we're somewhere in the 15-20 year range now, probably (it's kind of hard to measure).


While that statistic doesn't mean much, that number does.

I feel like I should tell you something really important and significant.

I wish I could tell you my Big Secret to Survival, but I'll be honest -- I don't have one. No magic foods, no special supplements, no life-giving exercise routines. I do try to eat well and exercise, but I do that for my overall health, not because I think it will cure my cancer. I don't do those things nearly consistently enough to think it has had any effect on my FL.

The best I can do is try to keep myself informed about what researchers and others are saying about my disease, and learn to separate what is true with what is wishful thinking. (I think I've done pretty well there.)


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If you've been reading the blog for even a little while, you know that one of my big beliefs about Follicular Lymphoma is that it is an emotional disease as much as a physical one. For a lot of us, when we are diagnosed, we don't even have symptoms. And some of us can go for years without needing treatment. And because FL is incurable, even if we are treated successfully, we know that chances are good that it will come back at some point. We need to find ways to live with the emotional side effects of the disease as much as the physical ones.

I've been thinking a lot about FL-related emotions lately, and how I have experienced them over the last 10 years.

There are 3 that keep coming up: Fear, Guilt, and (it's not all negative) Joy. I've been in conversations with hundreds of other FL patients over 10 years, in person and online. The first two are the emotions that we all seem to share. The third one is the one I hear less about, but that I wish the most for all of us.

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Fear.

The fear never goes away. If you're new to all of this, that's probably not what you want to hear. It definitely gets easier to deal with, but it never goes away entirely.

I came up with a rule for myself years ago -- if I have a new lump or bump or ache or pain that I can't explain, I give myself 3 days. If it isn't getting better, and I still can't explain it, then I can call the oncologist. But I can't panic right away.

About two months ago, I had a pain near my left hip bone -- the same spot where I had swollen nodes that required the Rituxan 8 years ago. I did what I always do, and gave myself 3 days. And it didn't go away. So I extended it a week. And it still wasn't getting better. I felt a pull every time I bent over to tie my shoe. I'd lie in bed at night and feel the the nodes in that area -- Maybe they're bigger. No, probably not. No, they are definitely bigger. Is the top of my leg starting to swell like it did 8 years ago? I convinced myself that it was time -- I would need treatment.

I started debating with myself for a couple of days about whether to push the oncologist for straight Rituxan again, or maybe go for Bendamustine instead. I looked up clinical trials at the research hospital nearby and picked out a couple that might be good that I could talk about with him. I didn't call the doctor right away -- I'd had an annual physical a few weeks before, and my blood work was fine then, and I wasn't getting any other symptoms that would make me think that I had transformed. I figured as long as the swelling held off, and I didn't have any other symptoms, then it wasn't too aggressive and I could probably wait until after the holidays and my anniversary trip with my wife before I called the doctor.

And then one day the pain went away. And those nodes maybe didn't seem so large after all. And, yeah, that "swelling" wasn't really swelling, but maybe too much pie at Thanksgiving. When I thought about it, I could explain the pain -- probably a muscle pull because I had to lug some big awkward things around my house, maybe about the time the pain showed up.

I'm fine.

That fear never goes away. It hides, but it's always there, looking for an excuse to jump out. Even after 10 years and 1200+ blog posts and who knows how many medical journal articles about Follicular Lymphoma that I have read, the fear is still there.

But over 10 years, I've learned not to let fear turn into panic. The fear doesn't stop me from looking back at what I've learned and thinking about what to do to deal with it.

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Guilt.

I'm in a few online groups, some for Non Hodgkin's Lymphoma in general, and one for Follicular Lymphoma specifically. Last week, someone posted in one of the groups about losing a friendship. Her friend didn't believe that this FL patient was really sick. The friend's sister had cancer, and she saw what her sister had been through, and anyone who "supposedly" had cancer but didn't get treatment (the FL patient was watching and waiting) was obviously lying about serious it was. The FL patient felt awful about losing that friendship.

The weird thing is, I totally understand the friend's way of thinking.

I've seen many FL patients have a strange kind of survivor's guilt. We see other cancer patients going through horrible treatment, and here we are (some of us, anyway) with no symptoms, no major loss of Quality of Life, and (for me) a relatively "mild" treatment that left me tired and achy for a few days, but pretty much able to function normally.

It's enough to ask "Why me? What makes me deserve this luck?"

I remember, years ago, being part of an online group for Non-Hodgkin's Lymphoma patients. There were patients in the group with all types of NHL, not just FL (there are as many as 60 different kinds of NHL). For a couple of weeks, there was an ongoing  argument about who had it better -- people with indolent lymphoma like FL, or people with aggressive lymphoma, like DLBCL.

If I could have chosen, I would have had FL like you -- no harsh chemo necessary. You get to just wait it out.

Oh yeah? Yours might be aggressive, but it's curable. I'm stuck with mine forever. And there is an emotional toll that comes with watching and waiting.

It was such a strange thing to discuss. People in a group that was meant for support, but they're fighting over whose cancer is worse. I still hear that whole "Well, at least you got the good kind of cancer" thing from time to time. But there's no "good" cancer. But even that comparison, especially from other cancer patients, can bring on some serious guilt.

And I have to say that I do feel guilty sometimes, even when I hear from some of you about the treatments you've gone through, that I haven't. Why me? What makes me deserving of this luck, when other people with FL have had it so much worse?

And if it isn't guilt about not having a "real" cancer, it's guilt about getting it in the first place. I've written before about why I don't want to know about what caused my cancer, and it's because it was most likely a random genetic mutation, and not something I did. And if it was something I did, there's nothing I can do to change that now. I have too many other things to worry about than to worry about something from the past that I can't change.

Like fear, that guilt never really goes away completely.

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Joy.

Not all emotions are bad.

Now, there are cancer patients who say that getting cancer was the best thing that ever happened to them. After surviving the ordeal, they appreciate everything a little more now. The sun feels warmer, and strawberries taste better, and even getting stung by a bee is OK, because it reminds them that they are alive.

I'm not one of those patients. I could have done without all of this, thanks very much.

But that doesn't mean that I don't find joy every day. I feel joy -- I just don't get that joy from having (or surviving) cancer.

I'll tell you one of my great sources of joy over the last 10 years -- this blog. It started out as a way to keep family and friends updated on my diagnosis and possible treatment. And after a while, other FL patients found it. I can remember vivdly the first time I got a comment from someone I didn't know. That was pretty amazing. A joyful moment. And I remember the first time I got a comment from someone outside the United States (he was from Scotland, appropriately enough, given my family background). Another joyful moment. I remember when the blogging platform was bought out by Google, and Google added an analytics package, and I could finally see just how many people were actually reading the blog. Incredibly joyful. And you can't imagine how much joy I feel whenever I get a comment or an email or a Twitter message from someone saying that blog has helped them.

So it isn't cancer that gives me joy -- it's my reaction to it, and what follows from there.

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Maybe that the Big Lesson.

Not the Big Secret, because I hope most of you have figured it out already on your own.

We can't avoid the cancer. We can't avoid the emotions that come with it -- fear, guilt, sadness, worry, impatience, grief -- and all of the variations of those negative things.

But we can control how we react to it all.

And somewhere in that reaction, we need to figure out how to find Joy.

I'm so lucky to have been able to find a way to react to my diagnosis by writing, and being able to share what I have learned with others. It's been a gift. I can stay informed in a way that helps other patients and bring Joy to myself. How many people can say that?

But that doesn't mean everyone has to find Joy by thinking about cancer every day. If your way of finding Joy is to not think about it, go for it.

And if your way of finding Joy is to delight in getting stung by a bee while you're picking strawberries, then more power to you.

But whatever you do, find the Joy. Wherever. However.

That has to be the Big Lesson.

If I had spent 10 years focused on the negative stuff only, I don't think I'd have been able to get out of bed most days.

And of course there will be bad days. And it's OK to have them -- we've earned them.

But somewhere in there, we need to actively find Joy.

After 10 years, that's the best advice I can give you.

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There are a lot of people to thank after 10 years. My awesome wife, my rock. My great kids, who give me joy every day. My mom (who died almost 4 years ago) and my dad. My brother and his family. Lots of great in-laws, cousins, nieces and nephews. Many great friends. People who started out as strangers who have become friends. Support group members. Lots of doctors and nurses and other office support people. And all of you readers who have read, commented, emailed, and encouraged and supported me.

All have you have helped me fight the Fear and Guilt, and find the Joy.

In case you were wondering, I plan on being around for my 20th diagnosiversary, and for many more beyond that.

Thanks for reading.