14 Years

Today is my 14th Diagnosiversary. I was diagnosed with Follicular Lymphoma on January 15, 2008. 

That means it is also the 12th anniversary of receiving my first round of Rituxan. 

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Every year on this day,  I try to take some time to reflect on the number of the diagnosiversary. For example, my number five diagnosiversary was significant because that's typically the smallest number that Overall Survival is measured in. I figured if I made it to 5 years, that must have meant something important. 

The number 14 is a little different. It has some personal significance. When I was a kid, my favorite baseball player was Jim Rice, left fielder and designated hitter for the Boston Red Sox. He was a great player, voted into the Baseball Hall of Fame. He wore number 14, so I did too, whenever I could. (Fortunately, baseball and hockey uniform numbers for kids sports usually corresponded to sizes, so uniforms with numbers 1 through 4 were size Small, 5 through 8 were Medium, etc. As a larger-than-average child, number 14 was usually a Large or Extra Large, so I got to wear my favorite number pretty frequently.)

So I suppose I should be happy with diagnosiversary number 14 for that reason. It has brought some good memories of my childhood.

In terms of cancer, I'm happy with the number 14 for another reason. Somewhere, long ago, I read about a study that looked at long-term survival of Follicular Lymphoma patients, and it found that none of the patients in the study had transformed after 14 years. If you're unfamiliar with what transformation is (most of you already know, I'm sure), transformation is the process of having fairly slow-growing FL cells turn into faster-growing, more aggressive cells, usually meaning the FL has turned into Diffuse Large B Cell Lymphoma. The cells become something new, and usually more dangerous. 

I wrote about that "14 years and no transformation" statistic in 2012, though I must have also seen it earlier, based on this post from that year. 

So 14 has had that significance for me, too. For a long time, at least 10 years, I've been kind of looking forward to this year, thinking if I could make it this far, it would be another important milestone -- less danger of transformation. 

I've since seen that "no transformation" number go out to 16 years, and I've also seen someone post online saying that she transformed after 14 years. (I don't remember how long it had been since she was diagnosed, but it was more than 14 years.)

So I don't think I'm fully out of danger, as far as transformation goes. But it does feel less and less likely as I go along. That's a little bit comforting.

Still, that idea of "transforming," or changing in lots of different ways, has been rolling through my head for a few weeks now, as I have been aware of my diagnosiversary coming up. It seems like a good topic for reflection on this day.

And just to really emphasize why "transforming" should be the theme of my reflection this year, consider this -- when I started writing about Jim Rice a few days ago, I went to YouTube to find a  video of him hitting home runs. I found one, and as I watched, at about the 1:45 mark in the video, Rice hits a home run off of one of the light towers in Fenway Park. The announcer describes it as "up there with the [electrical] transformers. And he transforms a 4-0 ballgame into a 7-0 ballgame." It's fate. Year 14 is about transformation and change.

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I'm not giving any new information to anyone here when I say that having cancer changes you -- it can transform you from one person into another.

I've thought about this question a lot over the last 14 years -- if cancer changes us, who are we supposed to become?

I think I've written about this before, but there's a line in the song "The Rainbow Connection" that always makes me think about this. (And one of my kids is teaching himself banjo right now, and "Rainbow Connection" is in his play list, so I've been thinking about it even more lately.) The stanza goes like this:

Have you been half-asleep, and have you heard voices?

I've heard them calling my name.

Is this the sweet sound that calls a young sailor?

The voice might be one and the same.

I've heard it it too many times to ignore it.

It's something that I'm supposed to be.

Someday we'll find it, the Rainbow Connection,

The lovers, the dreamers, and me.

I've heard it too many time to ignore it/It's something that I'm supposed to be.

What am I supposed to be?

If cancer changes me, what does it change me into?

That's what I've been asking myself for 14 years.

But asking the question that way gives all of the power to cancer, as if the disease decides who I'm supposed to be after I change.

Maybe, after 14 years,  the better question to ask is, what do you want cancer to change you into?

There is so much in life that we can't control. The Covid pandemic has just made that more and more obvious. But those of us who have been diagnosed with cancer already knew that. We can't control the genes that mutated and caused the cancer. We can't control the treatments that we are given to fight the cancer. We can't control the ways our bodies change, either because of the cancer, or the side effects of the treatments, or the side effects of the things we do to deal with the side effects of treatments. 

But we can become someone different.

We can choose to become someone different. 

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I still don't know who I'm "supposed to be," as the song says. But I think I know who I want to be, and maybe what the world needs me to be.

I like to think, in 14 years, I've become more compassionate. Part of that has been because I was lucky enough to be a part of HealtheVoices, where I got to meet a lot of other online health advocates. I learned so much from them, not just about how to be a better advocate, but about their diseases and conditions -- cancer, HIV, diabetes, IBS, and about 30 others. But it's especially true of mental health issues. I've always been sensitive to the kinds of mental and emotional issues that some with having cancer, especially Follicular Lymphoma. But I've learned even more about the kinds of mental health issues that the rest of the world deals with, too -- anxiety and depression and other conditions that keep people from being who they want to be. I try to be much more sensitive to that, and to remind myself that other people are suffering in ways that I can't see. It's hard sometimes to step back and look at others when we're dealing with so much of our own stuff. But it's so important.

I've come to realize that there are two kinds of people in the world who have gone through some stuff -- and all of us who have been diagnosed with cancer have gone through some stuff. When we encounter someone else who is having a hard time, we can have one of two reactions. First, we can say "I've been through hard times, too. I had to deal with it, so you have to deal with it, too," and basically abandon those people to deal with things on their own. But the second reaction is to say, "I had to deal with something hard, and maybe I'm still dealing with it, but I know how awful it feels, and I don't want anyone else to have to go through what I went through." 

When I can choose who I'm "supposed to be," I want to always remember to choose be that second person. The compassionate one. The one who does what they can -- even if it's something small -- to make someone else's life just a little bit easier., especially if we know how hard it a time they're having because we've been through it ourselves.

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Back to Jim Rice, my boyhood hero who wore number 14 on his uniform.

There's a story about him that I won't ever forget. 

It was in August 1982. There was a 4 year old boy sitting just behind the Red Sox dugout. Someone hit a line drive -- very fast and very hard -- that hit the boy in the face. Jim Rice saw what happened and immediately grabbed the boy and brought him from the stands into the dugout. He was in an ambulance and on his way to the hospital within 3 minutes. He had emergency surgery. He lived and he was OK. The doctors said Jim Rice's quick action probably saved his life, because if he had waited for emergency workers to come and get him, the boy might have had too much damage to his brain.

Jim Rice's first instinct was to help. 

(So was his second instinct -- he visited the boy in the hospital, and asked the hospital to send him all of the bills for the boy's medical expenses.)

That's the change I have chosen, and the one I hope I'm living.

Maybe not so dramatic as Jim Rice's. Maybe not saving someone's life.

Maybe it's just being kind. Maybe it's just being more open to understanding others, especially those that our first instinct tells us to look the other way. Maybe it's just figuring out what someone else needs, and deciding that if it is something that you can give, then giving it.

Just being compassionate. Recognizing pain in the world, in whatever form we see, and knowing exactly how that pain feels. And then doing something to make it go away, even just a little bit, even for a short time.

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I hope you all get the chance to do a little reflecting some time, to think about the ways you have transformed and changed. And to think about the ways you have chosen or can choose to change.

Because, really, that's what this blog is all about. Increasing knowledge and taking control of your life, even in a small way.

And I hope you all get the chance to celebrate 14 years, if you haven't already. It's a nice place to be.

And as always, thanks for reading.