16 Years

Today is my 16th diagnosiversary.

I was diagnosed with Follicular Lymphoma 16 years ago.

It has also been 14 years to the day that I started my first round of Rituxan.

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My diagnosiversary is always a day for reflection. It's actually more than just a day. It usually occurs to me sometime in October or November that The Day is coming up. That's when the reflection starts. I think back over the past year and what I've seen and done and been through. I think about what kind of lessons I've learned. Sometimes it's not so much about what I'm thinking. It's just what I'm feeling.

It has been a fairly eventful year. And high on the list of "events" was getting diagnosed with Basal Cell Carcinoma, a pretty common skin cancer, in October. As I wrote about when I got the diagnosis, it was not a surprise. I'd been having some Actinic Keratoses removed from my scalp and hands for the last few years (they are small benign growths that can lead to Squamous Cell Carcinoma if left untreated), so it always seemed like just a matter of time before one of those two types of skin cancer showed up. 

Being prepared for it emotionally was a good thing. I suppose I've been prepared for it emotionally for 16 years, in a way. Hearing a doctor say "You have cancer" is always awful -- the first, second, or tenth time. For me, the first time, with the Follicuar Lymphoma, was such a shock (I was 40 years old and in the best shape of my life at the time, something a lot of FL patients seem to say). That made it seem much worse. "You have cancer" is still not something I wanted to hear again, and I hope I never hear a third time. But there just seemed to be a kind of "Here we go again" feeling with the skin cancer diagnosis. I've done this before. I can handle it.  

So the day of the surgery wasn't as awful as it could have been. I had read the description of the procedure on the dermatologist's website and watched the videos that they recommended. I've been to enough appointments, had enough scans, and sat in enough treatment room chairs to know how to calm myself on an eventful day. As I was reading around on the dermatologist website, I read the "About" section of my surgeon (he is not my regular dermatologist). It said that one of his hobbies was collecting rare wines and whiskies. I can talk about whiskey all day. So on the day of the surgery, he gave me a local anesthetic, and he and I had a lovely conversation about Macallans and Springbanks while he did the surgery. 

It was an uneventful kind of eventful day. As a friend drove me home, I remember thinking "I get diagnosed with the most boring cancers." That's not a complaint.

But a few days later, I started thinking back on the surgery. I won't get into detail, because this is different than the Follicular Lymphoma experience that we all share. Let's just say I thought about all of the sensory details of the surgery -- the sights and smells and sounds and sensations. They were not pleasant memories.

It all reminded me at that point just how violent cancer can be. As a cancer patient, I've experienced plenty of small violences, with scalpels and needles and IVs and fingers and other things that have gone into me. That's all been a part of the cancer experience for even more than 16 years, since back before I even knew that I had cancer. But something about that moment of reflection a few days after the surgery just made it all new again. 

Cancer is a hard thing to escape. It stays with you. It's harder still when you have a cancer that is considered incurable, and one that makes you susceptible to secondary cancers. I've spent 16 years coming to peace with that. It was easier the second time. I was prepared.

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Another of the big events in this eventful year was going to Italy with my wife to celebrate our 30th anniversary. We actually just finished our scrap book from the trip about a week ago, many months later. It was nice to look back at all of the pictures we took, and some of the little souvenirs like ticket stubs that we'd saved, and to look at the diary that we kept during the trip. It was a high point of the year. Of the last few years, really.

It was paid for, in part, with some Cancer Money.

As I have discussed before, I don't monetize this blog. I don't have any advertisements on it, or charge anything for it. Some cancer bloggers do, and that's fine for them. I know some of them who can't work because of their health, and ad revenue is an important source of income. I'm fortunate that I am not in that situation. I'll remind you that, if you find a cancer resource online that you need to pay for, just make sure they provide sources for their information, and the sources are legitimate. Just linking to another blog is not legitimate, in my opinion. Make sure the information you pay for is good and trustworthy. 

So while I don't make money off of the blog directly, the blog has led to some really nice cancer-related opportunities that do pay me. Some of the writing I do elsewhere is for pay, though not all of it. I've done some small consulting jobs. Once I gave feedback to medical students learning how to deliver bad news. Another time, I was a judge for a contest. None of them pay a huge amount, usually enough for my wife and I to go out for a nice dinner (but not too nice). But it all adds up over time. We put that money in a special bank account. I call it "Cancer Money." My wife wishes I would call it something else. But it has a purpose -- to have some fun experiences.

Last year, we used some of the money to buy very overpriced tickets to see Bruce Springsteen. The concert was scheduled for March, but a week before the show, half of the E Street Band came down with Covid. They rescheduled for September. Two weeks before that show, Bruce was diagnosed with a very painful duodenal ulcer and he postponed again. So now we're rescheduled  for April -- we hope. 

Cancer Money is about finding the good in the bad. If cancer is going to take from me, I'm going to be darn sure to squeeze whatever I can from cancer. And I'm going to do something fun with it. It's easy to forget that, even with cancer, we're supposed to be having fun. It helps to be prepared for that, too.

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I don't know if any of you are Bruce Springsteen fans. I recommend one of his recent albums, Letter to You, which is a really wonderful meditation on the changes that come from getting older. Bruce is 74 years old, and he's still doing 3 hour shows when he's on tour. About 40 years ago, he decided that he was tired of being exhausted after his shows, and he started to pay more attention to his health. He prepared for the life he is still living now.

But he's also 74 years old. There are things that he can't control. Covid. Ulcers. Falling down during concerts every now and then. He's probably prepared for those things, too. He gets back up and plays on.

So if there's a lesson that I have learned over 16 years as a cancer patient, it's in those two stories, taken together. There needs to be a balance in our lives. As cancer patients, as much as we prepare ourselves for the bad things, we need to prepare for the good, too. We have to be emotionally ready for whatever difficulties that cancer brings us. But we need to be ready when the good opportunities happen -- emotionally, physically, even financially, as much as we are able. 

And then we need to be brave enough to take those good opportunities when they come.

Thank you, once again, for being such a big part of these 16 years. Stay well. And stay prepared. I hope a really good opportunity happens for you soon, and that you are prepared enough, and brave enough, to do it.\