15 Years

Today is my 15th diagnosiversary. 

I was diagnosed with Follicular Lymphoma 15 years ago. And I began my first Rituxan treatment 13 years ago today, after 2 years of watching and waiting. 

As happens every year, I start thinking about this day about a month before it comes. I'd like to share what I've been thinking about lately, and what I've learned in my 15 years as a cancer patient.

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Something kind of remarkable happened a few weeks ago in the world of United States politics. 

I don't like to talk much about politics in this blog, because it divides us too much, especially in the last few years. And that's what made this event from a few weeks ago so remarkable. It involves two politicians, from very different sides of the political divide. I won't even give their names or link to a story about it. But it's safe to say that they believe in very, very different things, and see the world in very different ways, and both are very vocal about it.

One of them was diagnosed with cancer -- Diffuse Large B Cell Lymphoma, FL's more aggressive cousin. In the announcement about the news, he called the cancer "serious, but curable," which is probably an accurate description.

The news was greeted on sites like Twitter in some very expected ways -- good wishes from people who agreed with this politician, and some nasty words from people who disagreed.

But one politician, someone that he clashed with a lot, posted a very surprising and supportive message in Twitter:

We disagree often, but I’ll be praying for [the politician]. Cancer is a terrible disease. I watched my father die from it, and it broke my heart. It’s good [he] has hope and his form of cancer is curable with the treatment he will be starting.

The politician who was diagnosed responded: 

Thank you, [her name], for this touching message, which my youngest daughter showed me. I’m grateful for your concern and very sorry to learn that you lost your father to cancer. Wishing you happy holidays with loved ones.

 I can honestly say that the exchange made me cry.

As different as we are from one another (and we live in a world that seems to highlight those differences), cancer somehow brings us together. There are experiences, words, even tastes and smells, that we all share (if I mention the saline taste before a scan, you probably know just what I mean). We've all heard the words "You have cancer." It unites us in ways we would rather not be united in.

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All of this me think back to some of the connections I have made with people over the last 15 years because of cancer. Last week,  I got tired of my youngest child making fun of how big my email inbox is -- I don't erase any old emails. I'm a digital pack rat. So last week, I did my best and went through my 500 old emails and erased a bunch that I never should have kept in the first place.

But one thing I found was that I had dozens and dozens of emails from many of you -- readers of the blog. And I hadn't erased any of them. 

I'm sure there is a psychological reason for not erasing those emails. (And if you're a psychologist and you know what it is, keep it to yourself. I'm all for self-awareness, but not today.) I do know that one reason I saved them was because, every now and then, there are some of you that I like to check in on. I'll just start thinking of you, usually when I haven't heard from you in a while, and I'll send an email, so I need your addresses. It makes me feel better.

I don't do that for everyone, because sometimes, it just feels like I'll be invading someone's privacy if I sent an email out of the blue. And I don't want to do that. The same child of mine who thinks I save too many emails also warns me that certain behaviors are "creepy" and "cringey." Which I understand. So I avoid intruding on people's lives. Some people have successful treatment, and want to move on from thinking about cancer so much, and I can just be a reminder of their cancer. And I don't want to be that.

But it is important to me to stay connected. And I really do love getting email from readers. It validates the work that I do, obviously (over 1600 posts -- it's been a lot of hours of reading and writing). I like hearing that people like the blog -- who wouldn't? And sometimes the emails are very flattering (Someone once wrote to me, and I responded to her questions, and she wrote back again to tell me that it felt like she was talking to a celebrity. My kids made fun of me for that.) But it's more than just getting "fan mail" or something like that. Even after 15 years, it feels good to hear from someone who has been through the same experience. It's more than validating the work; it's validating the life. I'd never wish cancer on anyone, but it's nice to know you're not alone in it. 

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That's one of the great benefits of being in a support group -- knowing you're not alone. I've been thinking lately about that support group that I sometimes mention. I found it just a few days after I was diagnosed, and it was a huge help to me in those first few years. It still exists -- there's a link to it in the "Sites I Like" list. I still visit it every few days. It's changed a lot. You'd expect it to change after 15 years. Some of the same people are still on it, which is great. But there are fewer people, and fewer posts. There are a whole lot more places to go online for information than there were in 2008, and more places to go for community and connection as well, which is probably why it's less active than it used to be.

Those early days after my diagnosis were so hard, and the connections I made in that group were so important. There are folks from that group that I have stayed connected to, on Facebook and Twitter, and that I have worked with in different ways over the years, trying to support one another in helping other patients. One ran a charity that supports lymphoma patients, and who asked me to take it over from him -- I turned it down because one thing that cancer has changed about me is that I really don't want to be in charge of anything anymore. Plus I really like my current job and wouldn't want to leave it. Another started a charity that provides free vacations for cancer patients. I've tried to support that one, too. I've stayed fairly close to some people that I've never met in person, but who have been very important in my dealing with cancer.

But for all the connection and success from those early days in the support group, all those folks who are still around, there are a few people who are gone now, and whose memories stay with me. One was a young girl, about 18 or 19. She had just started her first year of college when she was diagnosed with an aggressive lymphoma. She was treated successfully, but it didn't last long, and her family's health insurance was cancelled. (This was before the Affordable Care Act, so private health insurance could be cancelled because someone had a "pre-existing condition," meaning that since they had cancer, they were too much of a risk for the insurance company.) There were months of posts from her about fundraisers so she could get a stem cell transplant -- there were people she had just met in college a few weeks before she was diagnosed, and now they were working to raise thousands of dollars to help her. Unfortunately, she wasn't able to raise enough money and she wasn't able to get the transplant. 

That was devastating. I didn't know her well, but it hurt for lots of reasons. It was a young life gone before it really started. It made clear that my health was at the whim of an insurance company. And it made me understand how important it was that the healthcare system in the U.S. be changed. (Like I said, I don't do politics here, but I'll do it when it involves the lives of cancer patients, and there is a lot of change to the healthcare system that still needs to be made.)

Another memory -- an older woman who joined the group and immediately became everyone's best friend. Another FL patient, we bonded quickly and supported one another. She used to call me "Little Bro." She'd already had a few different treatments when we met. She died fairly suddenly, not from lymphoma, but from the complications from all of the treatments that she'd had. I remember that my wife was away for the weekend, visiting her old college roommates, when I got the news. Not a lot of big lessons there, other than a harsh reminder about how fragile life is, and of how important it is to not take anyone for granted. 

Maybe that's why I save all of those emails. I want to hang on to all of you for as long as I can. The good news is, so many of you have been hanging around for a really long time.

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Two more people I've been thinking of lately. Both of them are parents of kids who went to school with my own kids when they were young.

One if them is a doctor. I knew that both he and his wife were doctors. His wife's schedule must have been more flexible than his, because I rarely saw him when it was time to pick up the kids after school. But I did see his wife, and we talked a lot. When I was diagnosed with FL, I told her about it. She wasn't really familiar with FL (she wasn't an oncologist), but it turned out that her husband was. And not only that, he ran the biopsy lab for the hematology unit at the big research hospital nearby. "He's probably the one who saw your sample and diagnosed your cancer," my doctor friend told me.

The other person I was thinking of was not a doctor. I didn't know what he did for a living. But one night, he and I were part of a group of dads that had volunteered to paint the bathrooms in the school before a big inspection. (Parents were often recruited for things like this to save money. I'm a very good house painter -- I did it during the summers all through high school.) After we finished, at about 10pm, the group of dads all shared beers in the school parking lot. We talked about our health and our failing Dad Bodies, and my diagnosis came up. He asked what treatment I had, and I told him it was Rituxan. Turned out he works as a lab technician for a pharmaceutical services company. "I mix that stuff every day," he said. "I probably mixed the bag you had for your treatment."

We live in such a weird, small world. 

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I've heard people say that being a cancer advocate is like dropping a small stone in a pool -- the water ripples outward in circles. The things we do can affect others near us, but some that are far away, too. 

What most of us don't notice is that those ripples hit the side of the pool and then come back town the place where the stone was dropped. We affect others. But those others affect us, too.

And most important -- sometimes it's hard to remember that we're all in the same pool. None of us is alone. It might seem that way sometimes, when others aren't physically near us, or when people who are near us don't seem to understand us. But what I've really learned over 15 years as a cancer patient is how many of us are in the pool, sharing the same water, bumping up against the same little ripples and big waves.

I'm thankful that all of you have been here to share this experience with me, whether you've been around for 15 years, or 15 months, or 15 minutes. You'll all a reminder of the things that connect us. I'm thankful that you keep reading, and keep writing to me in emails and comments, and keep working hard to deal with this life that we live as FL patients.

Thanks for reading. I look forward to another year with you.