The Internet is a dangerous place, my friends. It’s risky to put your words out there.
There’s been an interesting and, to me, disappointing little scuffle in the world of social media and editorial opinion over the blog and Twitter presence of Lisa Adams, who is in treatment for metastatic breast cancer. Ms. Adams has shared a great many of the details of her disease and medical care. She has written about her disappointment with “pinkwashing” and the misallocation of resources associated with awareness campaigns. She has said countless times that she appreciates expressions of love and support, but reminds us that those things will not change the fact that she’s going to die from this disease. She is in the hospital now, in treatment for some severe pain caused by bone metastasis (important note: her current hospital stay is about palliative care – pain management – but not about end of life care), and she’s Tweeting about it. A lot.
On January 8, Emma Keller wrote a piece for the Guardian that questioned the value of Lisa’s tweets and blog posts and the ethics of “dying out loud.” Apparently Ms. Keller thinks that Ms. Adams’ writing is a cry for attention rather than an honest attempt to educate readers. I’m not sure that matters. Ms. Adams is simply telling her story to anyone who’s interested.
Today, Ms. Keller’s husband Bill (who happens to be a pretty formidable voice in the publishing world, what with that stint as executive editor of the New York Times) has joined the fray. He seems to want to get in another little punch, and apparently resents what he sees as Lisa’s “warrior” approach to cancer (that’s a fundamental misunderstanding of her thinking, by the way). I’m not quite certain what other points Mr. Keller is trying to make; he seems to find it a bit fishy that Ms. Adams won’t tell us how much her treatment at Sloan Kettering costs, and that her doctors won’t offer an estimate about how long the treatment may extend her life (which is, of course, impossible to know). Where’s the problem here? I can’t imagine that this single cancer patient is the root of some deep-seated conspiracy at MSK to raise and then waste money on ineffective treatment. Are there legitimate questions about the cost of health care in the U.S., and about whether end-of-life choices might be informed by cost? Are there inequities in access to good medical care? Certainly. Is Lisa Adams doing something wrong? Not that I can see.
I find myself thinking, “Why are the Kellers picking on Lisa?” I suppose this is fair game, and that Ms. Adams chose to participate in a much larger conversation about cancer treatment and how it affects all of us, but this little round of written bullying seems strangely petty, and I’m sorry to watch it unfold.
I also feel as if I’d better clarify some of my own thoughts, lest anyone misunderstand this little blog. Here are the basics:
1) Cancer is bad. Having cancer is frightening. It is often, but not always, fatal. There’s not really any way to know how that will work out, which is also bad and frightening.
2) As I said just last week, different patients have different experiences. Some people decide from the get-go that they will take a warrior stance and remain optimistic to the end. Some people are immediately devastated and frightened and see no hope. Most of us, I think, end up somewhere in the middle, working to preserve and appreciate the strength we have, and sometimes feeling really lousy. There is no right way to have cancer.
3) Some cancer patients find expressions of positive thought, offers of prayer, and suggestions about treatment to be uplifting and useful. Some people resent them. In general, statements like, “Keep up the good fight! We know you can beat this!” are both inaccurate and ineffective, but they are usually well-intentioned. It’s not really possible to say the right thing, because – here we go again – there’s no right way to think about cancer.
4) Cancer treatment is very expensive. The fact that lots of people die because they can’t afford good treatment is heartbreaking. The fact that a great deal of money is spent on “awareness” campaigns and pink merchandise is disappointing, because that money would most likely be better spent on research or perhaps on funding the care of patients who can’t afford things like chemotherapy co-payments. There are legitimate questions to be raised about whether some patients are over-treated, and whether the value of a few extra weeks of life justifies the financial and emotional cost of that treatment. I do not believe there are “right” answers to those questions, either.
5) I can’t speak for anyone else. I write this blog because it helps me to work through my thoughts, and because I enjoy writing it. I share only things that I’m willing to make public, and I try not to share anything that I think could be embarrassing to me or my family. Social media is a gift to people who seek connections that can’t be made otherwise, and the virtual communities that support cancer patients and their families are essential to many of us. My blog gives me a way to offer some information to other cancer patients, which I do because I had lots of questions about what would happen and how I’d feel that my doctors couldn’t answer. I found answers to some of those questions in other cancer patients’ blogs, and for that I am grateful.
We’re all just out there doing the best we can.