Showing posts with label Work. Show all posts
Showing posts with label Work. Show all posts

Wednesday, August 30, 2017

It's that time again. Time to blog... and time to treat.

Tomorrow I'll start a short clinical trial -- four weeks -- in which we test the combination of  Rituxan with Imprime versus the standard treatment, just Rituxan. The trial is open to patients with relapsed/refractory follicular lymphoma, and I'm eligible which means that my lymphoma has relapsed.

That's elicited a few questions this week. (More on that later.) Does this mean your lymphoma is back? Did it ever leave? Is it getting worse? Are you okay?  To which the answers are yes, sort of, not really but sort of, and yes, definitely.

So here's the deal: follicular lymphoma, as I've known since the start is an incurable chronic disease. It never really goes away. That's bad. But it's often very slow growing. That's good. So five years ago, after I did my six rounds of Bendamustine and Rituxan, it went away. Sort of. And then slowly grew back, like pesky hedges that you didn't really notice were growing until they started overtaking your yard. So you get out the hedge trimmers and beat them back. Eventually, they'll grow again, but right now, there's no way to remove the hedges completely.

As has been the case for the more than six years since diagnosis, I've had no symptoms, other than the occasional small swollen lymph node. I feel fine.

So why treat? Well, not treating was an option, as was the option of just Rituxan. And Rituxan (and hopefully Rituxan plus Imprime) is a good treatment options for trimming back the hedges when they aren't too big and bulky. And right now, my hedges are just a little overgrown.

I'm also happy to have the chance to contribute in a small way to cancer research. It's through clinical trials that research moves forward. (There's a great post and podcast about that on our Dana-Farber blog.) If it weren't for clinical trials, today's approval of Car T-Cell Therapy wouldn't have happened. And, coincidentally enough, Car T-Cell therapy is an approach being tested in many blood cancers, including follicular lymphoma. And, may, big emphasis on the may, become a way to remove the hedges completely.

Talking about Cancer

For more than nine years, I've worked at one of the premier cancer centers. For more than six years, I've had cancer. Yet, I hesitated talking about my new treatment plans. For about a week, I procrastinated before telling my colleagues. I'm not sure why, to be honest. I think partly I was concerned about people being concerned. I don't like people worrying about me. But the other part of the answer is that I feel fine and until I'm sitting in the infusion chair tomorrow with stuff dripping into me, it doesn't feel like a big deal. I've known so many people who have had such challenging treatments, that a once-a-week treatment for four weeks seems kind of trivial.

In the end, though, I'm glad I ended up telling folks. It felt good to do, and the notes of support have been great to hear.

--Michael



Sunday, January 25, 2015

A Break From Cancer

Hello blog world. It's been a while since I posted. It seems that the further I go between posts, the harder it is to get over that inertia and post one. So here are some thoughts that have been bubbling up over the last couple months. 

Within a  year or so after I started working at Dana-Farber, a colleague of mine left. She was a cancer survivor who had been there for a long time and, as she said, she needed a break from cancer. I get it now. 

Beyond the challenge of having reduced tolerance for anything less than maximum effort on the part of my colleagues, working at a cancer center means I'm surrounded by cancer news. 

Often sad news. 

Between reading this beautiful blog and the sad but inevitable news of sportscaster Stuart Scott, I've been thinking a lot about mortality. Not mine, necessarily. Just mortality, in general, and how it can envelop us, particularly those of us who work for a cancer center. 

News that a patient we know has died often seeps in to our offices, filling the cracks between meetings and in-box messages, hovering over our department like Eliot's yellow fog and slowly settling heavily on our hearts. 

When I read the blog post that Jesi's mother wrote about Bringing Jesi Home, I'd been following her story and I could feel her family's loss through my screen -- could feel it so much that it hurt. 

And I thought of all of these beautiful patients we hear of --  people we've met through emails and conversations, through interviews and photo shoots, through videos and tv appearances.  Kids like Avalanna and Rayquan and Karina and Jesi, and now Fernando, who I mentioned a year or so ago.  They're  graciously shared their stories for us, with us. And if we're feeling this pain; what grief must their families and friends possess? 

It leaves me feeling utterly, utterly powerless. I truly believe that we're doing great things here, and at many cancer centers. But the foundation for new cancer treatments isn't being built in my office. And in fact, tThe connection between what I do and affecting some change in cancer mortality is beyond tenuous.

But if I'm going to pursue my editorial career at a cancer center, it seems like I have only two choices. Give up and go home; or redouble my efforts and remember that through our work, we can make a difference. 

We can share information and stories, that at least in some small way helps cancer patients or their families. And by talking regularly about these topics, by raising the volume of the cancer conversation, we can bring a little more attention to cancer research and discovery, we can ever-so-slightly help advance the cause.

This is the only rallying cry I can raise when the news hits us hard.  It's one I hope everyone working at any cancer center shares. 
--Michael