13 Years

Today is my diagnosiversary.

13 years ago today, I was diagnosed with Follicular Lymphoma. 11 years ago today, after two years of watching and waiting, I had my first Rituxan treatment. 

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13 is considered an "unlucky" number by many. I can't say it's been entirely unlucky for me. As hard as the last year has been in so many ways, I know I'm lucky to be here. I'm lucky to have a form of Follicular Lymphoma that has grown slowly, responded well to treatment, and stayed stable since then. As much as I'd like to say I have stayed healthy for so long because of things that I did, of steps that I have taken to actively push my cancer away, I know that's probably not true. 

I've gotten plenty of advice over the years from people who tell me what to eat and how to behave in ways that will "cure" me, but I haven't seen any evidence that those things will help (as much as I would like there to be). I'm pretty good about eating my fruits and vegetables and getting up and moving, but my cancer cells are going to do what they're going to do. They just aren't good listeners.

That's just the nature of Follicular Lymphoma. It can "wax and wane" -- go for months or years without growing. And it might even shrink, on it's own. It's easy to think that whatever we did during that time was the cause of that good behavior from cancer cells. And that's OK, as long as we don't let that thinking keep us from doing things that are proven to help, like conventional treatments. Eating more broccoli won't help a cancer that has turned aggressive.

Let me be clear -- I'm not saying we don't have any control over anything. I don't believe that, either.

As my 13th diagnosiversary has been approaching, and I've been thinking more and more about "luck" and the role its played in my life as a cancer patient, a quote keeps coming back to me. It was from a book about athletes that I read (and re-read over and over) when I was a kid. One of the chapters was about the baseball player Ty Cobb, a great baseball player and a less than perfect human being. Someone accused him of being lucky, and he said "I make my own luck." 

There are lots of other quotes about luck out there that say something similar -- luck isn't about chance, but about being prepared for a situation so you can take advantage of circumstances. (I'll stick with baseball for another example -- "Luck is the residue of design," said Branch Rickey, probably a better role model for a young boy reading books about baseball.)

So eating vegetables and exercising probably aren't going to cure my cancer. But they will help keep me strong, if and when I do need treatment. And learning all I can about Follicular Lymphoma -- its biology and its treatments -- will help me work with my doctor to make good decisions when I need to. 

And, of course, doing all of those things helps me feel in control. Even if eating an apple every day won't keep the cancer away, it helps my mental health. At a time when many of us are feeling even less in control than we normally would be, even as cancer patients, it's an enormous help to know I am doing what I can to understand what is happening with my body now and where it might go in the future. There are so many things I can't control, but so many that I can. 

I can make my own luck. I can narrow the path that I walk on.

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A few weeks ago, my wife and I were doing some cleaning, and we make a really remarkable find -- the folder I had kept with notes and materials from my first few months of oncologist appointments. 

There are some typed notes, lists of questions for my first oncologist Dr. R, and then for the Lymphoma specialist I saw a few days later, Dr. C. Reading the notes brings back a lot of memories, good and bad. I can almost feel all of the up and down emotions from those few few weeks and months after diagnosis. 

(For those of you who are just starting all of this, I'm so sorry for you -- all of that unknown future, all of that focus on tests and results and figuring out what they all mean, all of those decisions about treatment options. It all sucks. A little part of that is always with us, buried, even after 13 years. But seeing it all again in my notes and in the questions I was asking brings it all up to the surface. I can only say I hope your questions are being answered and you're getting the support you need. If I can help, let me know.)

One piece of paper especially brought back memories. It was from one of my first appointments with Dr. R, after the diagnostic tests were done, and we finally had a picture of where we were. It's a plain piece of thin paper, with torn edges. I recognized it immediately. At that appointment, I didn't bring paper, or maybe my wife was using the notebook we had brought to take notes. So as Dr. R spoke, I took notes on the only paper I had available -- that "sanitary" paper that they put on the exam table, and then throw away and replace for each new patient. As Dr. R spoke, I sat on the table, spread my legs apart, and wrote furiously on the exposed paper. When the appointment was over, I tore it off and brought it home.  

The notes are all over the place, written wherever I could find blank space, shifting my legs to give me more empty space to write on. They are "all over the place," too, in terms of what I was writing, shifting from very hopeful to very pessimistic, but ending with hopeful (which isn't surprising). I remember coming home feeling better about my situation, having a slightly better understanding of what I was dealing with. It was a good feeling that would disappear a few days later after I talked to the specialist, Dr. C. (When he made the referral, Dr. R had warned me that Dr. C would be very straightforward. He was, and it put me into a very dark place for a couple of weeks.)

Another piece of paper that we found was a list of questions for Dr. C, and the first one was especially interesting --

"I am watching and waiting. What exactly am I waiting for?"

It's a question that can be read two ways, and it was written so long ago that I don't remember which one I meant.

"What are we waiting for?" can mean "Which changes in my body should we be looking for that will signal it is time for treatment?" That's a pretty standard question for people who are watching and waiting.

But "What are waiting for?" can also mean "Why are we waiting?" as in, "Why aren't we treating right away?" That's also a pretty standard question for someone on W and W, and certainly one I was asking myself in those early days. I remember thinking the idea of not treating was ridiculous the first time I read about it. I couldn't wrap my brain around it. I think a lot of newly diagnosed folks feel that way. I eventually came around to understanding the watch-and-wait approach and accepting it. (And I'm glad I did it.)

But those two ways of asking the question -- what changes am I looking for, and why am I even waiting in the first place -- kind of represent the two sides of a patient after a diagnosis. There's the physical stuff, the symptoms that need to be watched for. And then there's the big questions about goals for treatment, and how to handle the uncertainty of it all -- the mental and emotional parts of being a cancer patient. 

I've said it a lot on the past, and I still believe it -- for many of us, Follicular Lymphoma is as much an emotional disease as it is a physical one. With an indolent, slow-growing cancer, we often go months or even years without physical symptoms. But that doesn't mean we don't have the emotional symptoms that come with it all -- the fear, the worry, the guilt. What are we waiting for? Is that bump on my arm a mosquito bite or a swelling lymph node? Why am I worrying about this? Why not just get treatment? Should I call the doctor? Am I being paranoid? Why aren't there easier answers to all of this?

Both of those things matter -- the physical symptoms and the emotional symptoms. They mattered 13 years ago, and they still matter today.

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That question, "What are we waiting for?" has one more meaning to me.

I'm going to go back to sports for this one.

That question comes up a lot in sports movies. Usually about two-thirds of the way through the film. The team or the athlete has already shown how awful they are. There's no way they're going to win. And then something happens. Some breakthrough. Something that brings the team together, or that inspires the athlete with a spark of hope. There is a sudden realization that they might actually have a chance. They just need to come together, to work harder, and they can do it! And somebody says,

"Well, what are waiting for?!"

And then there's a cool training montage, of that group of awful athletes working together to learn how to win, or the single athlete digging deeper and finding the strength and will to make the impossible happen.

It's usually both really goofy, and really inspiring.

[And while I'm thinking about lots of sports movies that have this scenario (there are dozens), the one that keeps coming to mind is Rocky II. 

I love all of the Rocky movies, though Rocky 2 is my least favorite of them all. But that's what's in my head. And bonus -- in a later movie, an aging Rocky goes on to be diagnosed with an aggressive Non-Hodgkin's Lymphoma.]

And it's this third meaning of "What are we waiting for?" that I think we all need to keep in mind. 

There is so much beyond our control. So many things that we can't do.

But that doesn't mean we are helpless. It doesn't mean there is nothing that we can do.

We can take care of ourselves, physically. We can eat well, and exercise in whatever form works for us, and stay away from others who are sick.

We can learn all we can about our disease. We can know enough to ask the right questions and understand the answers and ask more questions if we don't like the answers we get. We can be active members of our care team, not just passive recipients of what others decide.

We can support each other. We can answer questions and give encouragement and share our story with people who need to hear it.

And if I've learned anything in 13 years, that's it . When someone asks "Well, what are we waiting for?" the answer should be "I'm not waiting for anything. I can start today, right now, to take control of the things I can control. I can make my own luck."

And that's true if you were diagnosed last week, or 13 years ago. It's never too late to get started.

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As always, thanks for reading. It has been a privilege to share my story with you. Thanks for being here with me.