Sunday, January 15, 2017

9 Years

Today is my diagnosiversary. I was diagnosed with Follicular Lymphoma 9 years ago today.

That means it's also the 7th anniversary of my first Rituxan treatment.

And, as always, I get a little reflective on my diagnosiversary. I think about where I have been and where I might be going. Bear with me.


I've been wrestling with a Big Question for 9 years now:  If getting cancer changes us, then who is it that we become?

Does cancer define who I am now? Am I Bob the Cancer Patient? Bob the Survivor? Bob the "Hero"?

Or is cancer just the thing that changes us, like a car that we drive to a new place. And now once we are here we can just leave it behind?

I guess that's possible (leaving it behind) for lots of cancer patients. But maybe not so much for someone with an indolent, incurable cancer. I didn't get a Complete Response 7 years ago. The Rituxan knocked it back, but there was still some showing up on the scan. And I haven't had a Complete Response for any of the scans I have gotten since then. As far as I know, I have always had at least a little cancer in me, for 9 years (at least).

I have thought about my cancer every day for 9 years, without exception. Not just cancer. My cancer.

Cancer has been a part of me, physically and mentally, for 9 years.


I write a lot. (Am I Bob the Blogger? Bob the Writer? Bob the Cancer Nerd?)

Not just the blog -- I write lots of other stuff, too. A couple of weeks ago, I came across an article that talked about creative writing -- fiction and poetry, stories and poems -- and how non-fiction (basically, stuff that isn't made up, like this blog) is not really valued by people who do "creative writing." Whether or not I agree with that article isn't important (and if you're really curious, the article is here, though you don't need to read it to get what I'm saying). 

The article got me thinking.  I don't write fiction or poetry. I'm not good at it. I write lots of non-fiction, though, like all of the stuff I write for the blog.

It was that term "non-fiction" that got me thinking. It got me thinking about Non-Hodgkin's Lymphoma. My blog is non-fiction about Non-Hodgkin's.

Ha. That's kind of cute, right?  But also kind of weird -- two things that I spend a lot of time thinking about, and they are defined by what they ARE NOT, instead of what they ARE.

Which brings me back to the Big Question: If getting cancer changes us, then who do we become? Are we defined by something we are?  Cancer patient?  Survivor?  Hero?

Or are we defined by something we are NOT? Healthy? Whole? Free from worry?


It is true that I think about cancer every day.

But it's also true that I think about being a father. And a husband. And, most days, I think about being a writer, and a Red Sox fan, and a gardener. And lots of other things.

So if today is a day of reflection, and I'm looking back at 9 years, I'd say the lesson that comes to me is this: Cancer can't define us. We define who we are.

I don't think I could have said that 9 years ago. Or even 8, or 7. It takes some time and distance. And I've been blessed with both.

I can embrace the fact that I am a cancer patient, without letting it define who I am. I can't stop thinking about it, any more than I can stop thinking about being a husband and a father. But I tuck it away and take it out when I need it.

It's easy to let cancer be who we are, especially when we're first diagnosed. And it can be overwhelming. It can be define who we are (cancer patient) and who we are NOT (healthy and whole). That's when it gets bad. That's when you have to really think hard about something other than cancer. That's when you have to decide who you are going to be.


I remember, long ago, soon after I had been diagnosed, having an odd conversation with someone about cancer. She had recently been to a cancer walk, or sponsored someone who walked. I forget. But she told me that she and a friend with cancer had been discussing her friend's status. She told me that her friend, who had recently celebrated 5 years in remission, had told her "When you have been cancer-free for 5 years, then you are a Cancer Survivor. Before that, you are a Cancer Victim."

I bugged me then, and it bugs me now, just thinking back about it. I might consider myself a lot of things -- Cancer Patient, Cancer Nerd, whatever -- but I sure as hell have never considered myself a victim. Self-victimization is an invitation to helplessness. And I'll never consider myself helpless.

That's the point of the blog, isn't it? Seek knowledge, and you can't possibly be a victim.


So, has cancer changed me? Of course.

Do I know who it has changed me into? Not really. I'm still becoming him. But a lot of who I am and become is going to be my choice.

I want to thank you all for finding the blog, and coming back again and again. As a writer, I can say it's been pretty fantastic to know that people are reading your words, and even better hearing that those words help some of you. That's made the last 9 years so much easier for me, and has certainly helped me figure out my role in all of this.

I wish you all the same 9 years of good health, plus many more.


Anonymous said...

Great blog today!
You put into words things that us cancer survivors need to hear. I struggle with that term. I've not had treatment, I don't have symptoms, but I do have cancer. I am a victim of a genetic mutation caused by something. But I don't want to call myself a victim.
I always think about cancer every day, and will I need treatment, and how difficult will that treatment be?
Thanks for being a cancer nerd for me.

Anonymous said...

Happy 9th diagnoversary Bob!
I am so happy you have reached this milestone, and, that you take all the time it takes to create this inspiring and informative blog. It's awesome!!
I was diagnosed with stage 4 Follicular Lymphoma in 2013 and after 6 cycles of BR and 2 years of Ritux maintenance I was fortunate to reach CR. I especially liked your comment that if you have knowledge you can't possibly be a victim so I read as much as I can. Your blog is an important part of my knowledge gathering, so thank you.

Anonymous said...

Your 9th diagnoversary is quite a wonderful milestone Bob. To answer your 'What am I?' question, IMHO you are 'Bob the Blogger'. One who has contributed so much to so many fNHL patients. I/we your readers are avid consumers of your blog. I look at your blog every morning. It is the first source for new fHNL information, and some days, like today, inspiration. I wish you fair winds and following seas in your future.


P.S. - My wife has aggressive fNHL. Diagnosed 5 years ago she progressed after 4 cancer treatments. On March 2, 2016 (her new birthday) she was infused with CAR-T and achieved a complete remission.

Anonymous said...

Happy anniversary Bob!
I agree with you.. NEVER did I ever consider myself a victim. When the words "why me" would come to mind, I would quickly follow that thought with " why not me".
I love your blog because it empowers us. There is strength in knowledge, and strength in numbers. We are all in this together!
Wishing you many many more years without treatment!!!

Virginia Miller said...

Happy anniversary, Bob! You continue to be an inspiration on how to live life fully with cancer. I ditto what Donna had to say about being grateful to have someone like you to be a "cancer nerd" for us. Blessings to you and all who read you!

Lymphomaniac said...

Thanks, everyone!

Anonymous said...

Congrats on your anniversary. I check for your blog everyday. Hubby was diagnosed almost 5 years ago with stage 3 FL. He had a bad infection, was hospitalized and found a swollen linguinal lymph node. No symptoms yet. We are also watchful waiting. As the years go by its always in the back of our mind, but keep on living. He's one of the fortunate ones since his blood work is good and no symptoms.
Thanks for doing all the work finding new articles about FL.
The more knowledge helps us.
Appreciate couple from Maine.

Anonymous said...

LIVING with cancer
Not dying of cancer

Anonymous said...

Congrats on 9 years! I'm not sure where I am from when I first presented. I wanna say it was Oct 2009, but I can't be sure. I am sure that the greatest thing that happened to me was coming to DC and lucking into Dr. Cheson. He immediately stopped any scans and even when I presented, he put me on watch and wait for a good while until the disease accelerated. I did BR--his preferred first line treatment post watch and wait--and had immediate and now durable (3 years) complete remission. Here's what he told me: 2 years post-treatment is now the marker. If one relapses after BR before 2 years, then outcomes become tenuous; if, however, one goes beyond two years, then durable remission is extremely likely, and then used a word I have never heard him use: Cured, even. I had never heard him use that word before, but he said much has changed recently. I was so flabbergasted I didn't even ask him where that data came from, but he said that when we are talking about 15 - 20 year remission rates, at what point do we not say "cured"? So he seemed to suggest that relapse before 2 years means difficulties; post-two years means long, durable remissions and maybe even cure. I may have dreamed this. Good luck to all of you, and let's keep fighting for better funding, better treatment, and better insurance. Peace and love!

Lymphomaniac said...

Thanks for the comment!
If you've been reading for a while, then you know how I feel about Dr. Cheson. I've never met him or anything, but he's done some great work, and I love his positive attitude.
I've read some about 24 month remissions being a good sign, though I haven't seen anyone use the word "cure." Even if Dr. Cheson says it, I'm still a little skeptical. Not that I'm complaining about being 7 years out from my last treatment. But I'd like to see more long-term, wider data before I feel that confident about it. But it's definitely a good sign.
And yes, I agree: Good luck to us all, and let's keep fighting for better funding, better treatment, and better insurance. That's all worth repeating, and so is the Peace and love!