Friday, January 9, 2015

Lymphoma Rock Star Update

If you read regularly, you know I like to call certain Follicular Lymphoma-related folks "Lymphoma Rock Stars." Sometimes they are great doctors like Bruce Cheson; sometimes they are patients like Betsy de Parry, who advocate for others patients.

And sometimes they are actual rock stars.

About three years ago, Tony Iommi was diagnosed with Follicular Lymphoma. Iommi was and is lead guitarist for the band Black Sabbath, and on his three-year diagnosiversary, he is talking about his cancer battle.

I was a Black Sabbath fan growing up (which helps explain my dwindling ability to hear as I get older), and I adored Iommi's opening guitar riff to "Iron Man." (Though, to be honest, once Ozzy Osbourne left Sabbath, my guitar loyalty shifted to Ozzy's new guy, Randy Rhoades. It's funny how things change -- when I was 18, I probably could have written 1000 blog posts on metal guitarists and their bands. I think that would have been more fun than writing about cancer, to be honest...)

Anyway, I was a Black Sabbath fan growing up, and so the headlines about Iommi getting lymphoma really caught my eye. He was about to begin recording a new album with Sabbath when he found a lump in his groin, which was eventually diagnosed. In 2012, it was announced that he had "early stage lymphoma," with no other details.

In how most recent comments, he reveals that it was Follicular Lymphoma that he was diagnosed with. He was going to ignore that lump, but Ozzy Osbourne convinced him to get it looked at. And when Ozzy thinks you have a health problem, then you really can't ignore it.

What really struck me, though, was the fear that he still has. It's something all of us can relate to. He says, "Every day I feel around for lumps and bumps. Every time I get a pain in my stomach I think, ‘Oh God, it’s cancer.’ It’s horrible." I think we've all been there -- and maybe we're still there.

For me, though, at some point that I don't remember, that "feeling every day for lumps" was able to stop. I don't think I've ever gone a day without thinking about cancer -- this blog and my daily check-in with the support group make sure of that. But at some point, I stopped obsessing over my cancer. I am at the point where I don't call my oncologist when I feel a lump or a bump or I have a strange feeling. My policy now is to wait three days, and if I'm still worried, I'll make the call.

I haven't called in a long time.

The other thing that struck me about Iommi's most recent comments was this: He's back on tour with Black Sabbath. He says, "Sometimes I wonder if I should try to live a more peaceful life. Then I think, ‘I don’t want to let the illness take over’. After all, I enjoy where I’m at now."

And I remember those days, too, saying No to a lot of things, wondering if I'd be around to finish whatever I started. And again, one day I decided that no doing things just didn't make sense. If I kept up with that same attitude, I'd end up never getting out of bed. I say no to lots of things now, but never because of cancer.
I know a lot of you, or your loved ones, are pretty newly diagnosed, maybe even just a few months out. I hope you're lucky enough to be dealing with something slow-growing enough that you'll be able to not obsess. It took me a while, but I got there. And now I'm coming up very quickly on the  7th anniversary of my own diagnosis. And I feel OK about it.
 I wish that same small sense of peace and patience for all of you.


Rodrigo Carvalho said...

Dear Lymphomaniac.
I'm Rodrigo Carvalho and was diagnose with FL in march, 2012, with complete remission since august 2012, after R-CHOP, when I had 38 yo.
I'm from Brazil, so forgive me about my poor english.
First of all, I'd like to thank you from the heart about your blog and all the great work in spreading the great news about our disease. It's a refuge (a paradise) to me read your post. It makes my soul and mind become calm and hopeful like any other things!! I concentrate all information about FL in reading Lympho Bob, and it's always good news.
Just like you, I'm a huge fan of Black Sabath and Toni Iommi.
But part of Toni's interview was a disservice to all people who have/had FL.
I've been so disappointed after I read what he said: "I could be here another 10 years or just one year – I don’t know".
People who was recently diagnosed may think that have only (maximum) 10 years of life after reading the interview.
We all know that is not true.
We have a cronic disease and we can live many many years, maybe decades, due to the new drugs and therapies recently aproved. Cure can be achieved in a not long future.
I also don't think that Toni's doctor told it.
Of course we know bad things can happen (transformation). But it's not common.
After I read the interview, I felt very sad and old terrible feelings came back.
I had to take a big breath and said to myself: "rodrigo, it's not true what Toni said about the overall survival. Go to Lympho Bob to see the reality!!".
I really don't know why Toni said it. Perhaps, to victimize himself, or maybe to tell people "go to my concerts, can be the last one!! Buy tickets".
One thing is sure. He didn't care about all the patience who does not have all the information about the disease (or don't know your blog - LOL).
Keep the good work!
Best wishes.

Anonymous said...

...just a follow up to Rodrigo's comment. I totally agree. So disappointing to hear that Toni has such a pessimistic outlook. No doubt he was informed by old statistics. My onc at MD Anderson in Houston told me day 1 that this is Chronic and the median for those diagnosed is a forecast of 20 years. Again, many are elderly and stats from Stanford from patients diagnosed 20-25 years ago (before Rituxin) have proven that the median almost reached 20 years back then. Not telling what it will be. And a median simply mean half go beyond that. Someone 38 can expect to witness a cure for sure. Other older patients can expect to live out their lives because of the current treatments used today. I am almost 50 and my onc basically said I will likely live out my life and they do not say things like that at MDA unless they believe it. Big changes are happening, like CAR-T. Mini allos have proven to cure. Someone needs to tell Toni about Lympho Bob!