How I Move On

I got this comment this morning on my last post, and I started to respond to it in the Comments section, but I decided to post it here because I was afraid it might get lost, and it was getting too long. Anonymous, I hope you don't mind my sharing the comment here in a more visible place.


Anonymous said...
Hi Bob,
I was diagnosed with Marginal Zone NHL a little over 2 years ago and had RCHOP off the bat, because I was really sick (in ICU for 2 weeks, several blood transfusions etc) followed by 2 yrs of Rituxin maintenance. I'm sorry if this is off topic, but I was wondering how the news of Senator Fred Thompson's death hit you. He was diagnosed with Marginal Zone Lymphoma 10 years ago, had radiation, then eventually was treated with Rituxin and went into remission for several years. I don't know about you, but every time we lose a public figure to NHL, specifically Indolent NHL, it brings me right back. Thank God for blogs like yours that focus on all the new treatments etc. However, situations such as Thompson's death make me realize that sometimes, we do run out of options...

November 3, 2015 at 11:26 AM

Anonymous, thanks for writing, and I'm sorry to hear that you had such a tough time when you were diagnosed and treated. It sounds like you're doing better now (I hope so, anyway).

Here's what's going through my head.

I've been thinking about Fred Thompson's death since I read about it a couple of days ago. He was, really, the first big celebrity that I mentioned in the blog -- a few weeks after I was diagnosed, he dropped out of the race for the United States presidency. Yes, a television personality was running for the Republican nomination in 2008. So much has changed since then............

I would, of course, go on to write about other celebrities with Lymphoma, in my "Nodes of Gold" series. Actor Mr. T,  Chicago Cubs pitcher Jon Lester, comedian Artie Shaw, Black Sabbath guitarist Tony Iommi, and many others. The idea was to show that even famous people weren't so different from us. They were still vulnerable.

But the secret to Nodes of Gold wasn't just in highlighting famous people. It was in highlighting famous people who were still alive. There are plenty of famous people who had lymphoma and didn't survive. Aviator Charles Lindbergh. Ramones lead singer Joey Ramone. King Hussein of Jordan. Former First Lady Jackie Kennedy Onassis. Lots more.

But I don't talk much about death in Lympho Bob. I don't think it's what people want to read about. It's not what I want to read about, and as I've said before, even if nobody else read this blog, I'd still write it, just for myself. Because reading and writing about where we are with Follicular Lymphoma, and where we might be soon, gives me hope. The blog is a hopeful space for me. It's hard to write about cancer. If I had to write about all the bad stuff, I don't think I could do it so much.

So while the blog is a hopeful space, that doesn't mean I don't think about death and dying, and as you say, Anonymous, we get reminders of that in the news every now and then. We get reminders in real life, too -- kind of an unfortunate side effect of still being in the online NHL support group. Sometimes we lose members. Sometimes those are people who we had gotten to know well. That hurts, not only because we feel for their families and friends, but also because it reminds us of our own mortality.

I've gotten good at pushing some of that sad stuff out of my head. I think the blog helps. I can focus on good things here, and writing about them helps me focus on them even more than just reading about them would. That doesn't mean I push them completely away, or that I could, or that I'd want to. I think about lymphoma every single day. I'm almost always search for and reading about stuff for the blog. And I check in with the online support group every morning -- it's just part of the routine now. Awake before the family, make a cup of tea, read email, check the news, read about lymphoma. 

But while I think about it, I don't dwell on it. That's a key difference.

And being almost 8 years out since diagnosis has made that easier. Not easy, but easier. Being almost 6 years since treatment has helped, too. And knowing as much as I know about Follicular Lymphoma has also helped. It wasn't always so easy to push things out. It comes with time. 

And, unfortunately, with practice.

I wish I could say that I gathered strength or inspiration when I read about people dying from lymphoma, whether they are famous or not. I wish I could say I read about their struggles, and how brave they were, and it inspired me to fight. That's not really true. It doesn't make me feel stronger. If anything, it makes me feel sadder, for a few days.

But, to be honest, at some point, I feel like I have to move on, as hard as it might be. At some point, it isn't about the person who died anymore, it's about me. I have to look at my own life, what I hope to do, what I hope to be, and then do and be that thing. It's not always easy, and sometimes it's not so much about moving on, but really just pretending that I'm moving on and going through the motions. But it's what I feel like I have to do.

I've gotten good at using my brain and not my heart when it comes to something like death. I can remind myself that we don't know much about Fred Thompson's condition, if he had other health problems that might have made him more vulnerable to the lymphoma. We don't know if he had some particular genetic sub-type that was less apt to respond to certain treatments or that affects only a certain percentage of patients (to be honest. I know very little about Marginal Zone, and if it even has sub-types that are susceptible to becoming more aggressive). I can remind myself about all of the great treatments that are already available, and the even better ones that are on the way. 

That fear -- it never goes away. It never gets easy. But it does get easier. 

I hope you remember to hope, and I hope you find some peace.