Saturday, July 22, 2017

Can We Please Stop Talking About How We Talk About Cancer?

I like BoingBoing.net and I follow Xeni Jardin, one of its editors, on various social media channels. As usual, she wrote a thoughtful piece, this one on the many well wishers who surfaced on social media and elsewhere after John McCain's recent glioblastoma diagnosis. And more to the point, she drove down the well-travelled road of how people wished him well, and the language they used.

Jardin is a cancer survivor and for her, and many people, the "cancer is a war, battle, fight" metaphor is a troubling one. I've had this discussion dozens of times in the last nine years in which I've worked at Dana-Farber. I've had it before I was a patient, and I've had it since I was a patient. And my position remains the same: Who cares?

I completely get both sides of the argument. I've been an athlete for many years; I love to compete. And I get the idea that someone telling you to "fight"is akin to a crowd cheering you on in the final mile of a marathon. It can be uplifting.

I also get the point that when you're so tired that the prospect of walking from your couch to your bed is more than you can even imagine; when you can't even muster the strength to read a book let alone write a blog post; then the notion of battling is so foreign an idea that it can feel burdensome at best, debilitating at worst.

But, As Jardin writes: "There's no one right thing to say when someone gets diagnosed with cancer. Even if there were, nobody elected me to be the cancer vocabulary police."

I couldn't agree more.

Different people want different things from their support network, and in theory, their support network would know them well enough to know whether telling them to "give it hell" would be encouraging or offensive. When you are as public a figure as Sen. McCain, though, the wishes come from near and very far. And people, looking to say something (and, no doubt, some people are looking to be noticed for saying something) fall back on metaphors and cliches.

In my dichotomy, there are only two types of people. Those who wish you well and those who don't. And if the intent is to wish you well, then as long as they don't say things like:

"Oh, I hope you have life insurance."  Or, "My third-cousin's sister's best friend died from follicular lymphoma." Or, "Don't poison your body with chemo." Or any similar not-so-sage advice.

I'm good.

Wednesday, May 3, 2017

Thoughts from Across The Pond

 A look back across  the River Cam, at I believe Trinity College (but don't quote me) in Cambridge, UK
ED NOTE: I wrote this back in February... but never published it. So four months later, here it is.


It's Saturday night. About 15 degrees outside. I've got a fire burning in the fireplace, a beer beside me, and I'm writing. Life is good.

Last Sunday we returned from a week in London, a trip we've been talking about for years. We had always wanted one trip where the kids were exposed to a different culture -- and even with a shared language (mostly), the UK definitely has a different culture.

The boys at our tour of Stamford Bridge, home to Chelsea FC
It was a great trip - full of all the expected sights that London has to offer, Westminster Abbey, Tower of London, Globe Theatre, and of course, a Chelsea game. Definitely a highlight for the boys. I think Cambridge was the highlight for me. That, and the fact that for a solid week, I didn't even think about my lymphoma.

It's not that cancer itself didn't come up. There were ads for it, and even a Cancer Research UK retail shop. But even as I thought of cancer, I didn't think of my cancer. And that seems somewhat remarkable to me.


Game Day Selfie 
But in some ways it's the natural evolution of my thought process. Six years in and lymphoma is so now fully part of who I am that it doesn't require me to think of it separately. I don't think that's a bad thing -- it's just a thing.  I always had a hard time with the concept of follicular lymphoma as a chronic disease. I kind of thought that it was called that because there was no cure, and the alternative label would be fatal disease. It's only recently that I've really come to believe that it's just something that hopefully I'll have to deal with for a while.

And a quick medical update... April visit was as uneventful as they come so we just move on to July and a PET/CT scan as planned.






Wednesday, January 18, 2017

A Quick Update


I've been toying with the idea of resuscitating this blog. Not sure if I will or not, but I find it nearly impossible that it's been almost a year since my last post. A lot has happened and nothing has happened. In that time, I've had four appointments, four blood draws, one scan, and one unrelated colonoscopy. So a typical year.

The scans in July, six months after this post, showed things were stable. There was discussion of possible new treatment options, some clinical trial options, but in the end, I've been moving toward a philosophy of don't do anything unless I have to.

In October and again yesterday, my blood work and examination showed nothing to be concerned with, so we are putting off another scan for six more months (Woohoo!) -- unless something shows up in April that makes us want to scan sooner.

So all in all, things are good. Hope to be back to this space on a regular basis, but only if I have something more thoughtful to say than what I've said above :)

--michael


Wednesday, February 10, 2016

Five Thoughts from Someone Else's Hospital Bed

I'm going to try something new. Rather than write, edit, revise offline and then post online, I'm just going to write, directly into the post and see what happens.

Let's call this one: Random observations from a hospital bed.... not mine.

Well, the observations are mine but the bed isn't. I'm sitting in Boston Children's Hospital while my son recovers from elbow reconstruction - an old broken elbow that never healed properly. While he sleeps, I think.

  •  I was walking back to the hospital after grabbing a quick dinner and I passed by a nurse who was headed home, and I thought, what an emotionally difficult job it must be to be a nurse. To come in each day and be such a positive force for these sick kids, and then to go home and to try not to worry about all those kids, and then to come back the next day and do it again, and again, and again. And then I imagined what it must be like for pediatric oncology nurses who take care of some of the sickest kids, day in, day out. Wow.
  • I think I'm finally over my scan results, and all it took was one Facebook post. (In that post, a woman was celebrating that her scans showed her tumors had waxed and waned to nothing.) Well, that helped, but so did a good therapy session, a talk with Stacy and a little time. The thing is: I was kind of expecting perfect scans which showed no growth at all. And when that didn't happen, it upset my universe -- or at least my solar system. And it took a little while for the planets to realign.

    See, I had decided that I'd make it through my 50s without any more treatment. And when the scans showed a little growth, this brought the possibility of treatment back into the picture, and I'm nowhere near 60. But I realize now that trying to make it through my 50s is about as wrong a plan as I could have. At best, it sets me up for disappointment; at worst it turns me into a calendar watcher, wishing and coaxing the years away for what? To hit some random goal? Sure, I hope the next scans show nothing, but if that's not the case, we'll deal with it then. In the meantime, I'm not going to wish for that day to get here any sooner. The future will be here soon enough.
  • How do you know if a teenager is feeling better? He asks for his phone.
  • Sometimes life is not about getting things done; it's about letting things happen. I thought this the other day when I was getting irritated at the general lack of productivity in my house. I don't do well sitting around doing nothing -- no surprise to anyone who knows me. And the aggregate amount of sitting around in the Buller household that day was reaching epic proportions; it was driving me crazy. But then this idea popped into my head. Well, actually, Stacy talked me into going for a run, which I did, and then after I did that, then the idea popped into my head. Still, the point is, at work, productivity may matter a lot.  But at home, it's okay sometimes if stuff doesn't get done.
  • My dual identities of Dana-Farber patient and Dana-Faber employee may converge. We are beginning a podcast where cancer survivors talk about different post-diagnosis issues and I believe I'm going to be the host of it. I've been back and forth with the prospect of being so open about my dual identities but I think it will be good - both for us and for me.