Tuesday, November 3, 2015

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.


Anonymous said...

Thank you so much Bob. I read your blog regularly and it helps so much. Marginal Zone is rare, so it is often lumped together with Folicular Lymphoma, as that is the most common of the Indolent types. It follows a similar clinical course, the same treatment stategies are used etc.,which is why your blog is so helpful. I've been in remission for 2 years now, have just finished maintenance and, like you, think about it every day, but don't make it define me. I am 47 yrs old now, have 2 teenage boys, and plan to be around for a long time. When I was diagnosed, I had no idea what the treatments were and did not have the time or opportunity to get informed as things happened too quickly. If or when it comes back, I will be much more informed and aware of my choices and there is alot of comfort and strength in that.
Be well,

Anonymous said...

Thank you for this blog. I get so much from reading it. Hearing about Fred Thompson dying from his indolent lymphoma really hit home. That said, your latest blog about hope is comforting.
Can you share a link to your online support group? I joined a FB group, but they are all praying to God, and I'm an agnostic.
Thank you again.
FNHL, grade 1, stage 4 W & W

Sumita Sofat said...
This comment has been removed by a blog administrator.
Popplepot said...

Great post Bob so true in everything you say, keep up the great posting. I'm in full remission after ritux monotherapy diagnosed May 2014, I always think long remissions = closer to cure let's all be positive everything is possible nothing is impossible regards chris from Belfast Northern Ireland

Unknown said...

Thank you for your great blog and blog posts. I have enjoy your balanced, clear writing on the subject of the disease and its consequences. Wanted to share this which I think might be of interest: http://www.hematologynews.com/specialty-focus/indolent-lymphoma/single-article-page/new-therapies-finding-their-place-in-management-of-follicular-lymphoma/ed43e7b4e930f6fdc4bf9b2e4f3f6125.html



Anonymous said...

Thanks, Bob, for a great post. Just read the article linked in the comment above which was written by Andrew Zelenetz, M.D., former head of Memorial Sloan Ketterimg's lymphoma service - another lymphoma rock star. I see another doctor in the same department every 6 months. Still watching and waiting after 4 years.

Anonymous said...

Thank you Bob and Anonymous. Having to investigate into Senator Thompson's after hearing it was lymphoma has stuck with me and I cannot shake it. I was diagnosed with follicular lymphoma in May 2013 at age 56. After about 18 months of W and W, I decided to start rituxan infusions. Within two weeks the lump in my parotid gland was visibly smaller and after the initial four weeks everything was gone... the parotid lumps and the abdominal sites. I have another year of maintenance, but worry about the arbitrary two year cycle for maintenance. What then??Even though we had different lymphomas, the Senator's rituxan history is similar to what I am doing. His ten year survival freaked me.
I came across this blog entry today. You always think you are the only one and no one understands!! Finding this post today, made me feel better to the point I am teary eyed. BUT they are good tears, tears of relief. Thanks.
Anonymous NY

Mike said...

Thanks to Bob, Anonymous, and everyone who contributed to this discussion.

My dx in 2009 (it was suspected and tested for in 1999-2000, and in retrospect, clearly present in 2004) was SMZL bordering on FL, or maybe visa versa. In any case, indolent NHL that caused me autoimmune issues AIHA/ITP, with the prematurely destroyed cells creating a very enlarged spleen. Didn't help that the spleen itself was full of lymphoma.

I did Rituxan, followed by R-maintenance, most recently 36 months ago. Having 20 Rituxan treatments took a toll on my immune system (IgG), and I am somewhat dependent on IViG now, a couple of times a year. Next IViG on December 2nd.

In retrospect, I wouldn't have done anything differently, and I will use Rituxan again when the need arises. The alternatives of splenectomy, chemo, or long-term steroids are thus far things I've been able to avoid. I do keep a close watch on clinical trials and potential off-label treatments.

As for Senator Thompson, I'm not sure we really know what happened to him. Yes, 10 years survival is short. One of the abstracts to be presented at this year's ASH reveals that those who had a good response to their first treatment for FL/indolent had average survival of 32.6 years. Amazing as that is, there's still lots of work to be done, for those less fortunate.