To Tell or Not?

Interesting piece on the NBC News site on whether or not to tell people that you have cancer. Or who to tell.  Or when.


First off, my own experience: I was pretty open about telling people right off. This blog was started very soon after I was diagnosed, precisely because I thought it would be the most efficient way of telling people. When she was asked by people what they could do to help, my wife's response was "Tell people." Spread the news for us, so we don't have to. I'm always open to talking about cancer, and my experiences with it. I think it will help others.

On the other hand, there are groups that I just don't tell. My students are among these people. And I'm really not sure why. Maybe it's a kind of weakness that I don't want them to see? (Though I'm pretty good about sharing my screw-ups with them.) Maybe I don't want to be defined that way? I don't want to be treated differently? I have told some classes. One, because we were discussing something that, when I added my experience, one student put some clues together and asked if I was a cancer survivor. I said Yes, but even that was complicated, because people have different definitions of what a survivor is. And I told another class, because we were talking about social media, and I let them know that this blog was one of the things that got me interested in how people communicate online. But it isn't something I bring up regularly, even when the opportunity presents itself.

So as much as I want to say, Yes, you should let everyone in the world know, I really can't say that. Because sometimes there are good reasons for keeping it hidden. Maybe if your bosses know, then things get weird at work, and you aren't looked at in the same way, and promotions and responsibilities disappear. Maybe some people just can't handle it, and it's better for everyone to just keep it under wraps, because the relationship is more important than the honesty. I can see where that might happen.

But one group I just can't understand keeping it from is your own children. Unless they're really young. But one person on the NBC story went to great lengths to hide an illness from his 14, 13, and 11 year old kids. The problem is, kids are smart, and they'll notice the change in you. And they'll assume The Worst. And if your reality is less than The Worst, then they're better off hearing the better news. And if your reality is The Worst, whatever that is, then they're going to find out soon anyway, so you might as well be honest.

Not an easy issue to come down on.

We all handle our cancer whatever way makes the most sense to us, and I certainly respect that. But for me, when in doubt, I say do the sharing. Keeping things inside is rarely the best approach.

Cancer Babe

I don't know about you, but I can't help but love an article that starts this way:

"Well-meaning person:

So, have you found life to be more meaningful now that you are a survivor?

Me:

No. Cancer is just a bunch of shit. "

And so begins "Lance Armstrong, Susan Komen, Cancer, and Me" by Ilana Horn, who writes the blog ChemoBabe. Horn is pretty straightforward about her experience. I recommend the blog of you prefer your cancer talk straight up and honest. (I certainly appreciate it that way.)

This particular article (originally a post on her blog) talks about the pressure that comes from being a cancer survivor -- pressure to somehow be inspirational, as her brief exchange above illustrates. Horn envies Susan Komen in a way, because the Komen Foundation was started by Komen's sister only after she died. Less pressure to be an inspiration that way, since the story of your life can be shaped by those who survived you. (I kind of get the feeling that Horn isn't too crazy about the Komen Foundation, given that she added a trademark symbol to the word "promised" in discussing Nancy Brinker's oath to her sister Susan Komen. And because she links to the scathing Twitter account created, allegedly, by Susan Komen's ghost.)

Horn feels kind of sorry for Lance, because he's still around and has to deal with failing to live up to the legend that he himself created.

But she's also relieved that one less legend means that much less pressure on the rest of us to be inspiring.

Read the rest yourself. And flip through her blog. Good stuff.

The Good Patient

 Susan Gubar wrote an interesting article in the New York Times' Living with Cancer blog a couple of days ago called "The Good Patient Syndrome." This syndrome is the tendency to not make trouble with the doctor or her staff, to not stand out as someone bad, out of fear that they won't help you because you're a pain the ass and they just want to get rid of you.

That's probably not true, as Gubar acknowledges. These people are professionals. They have taken an oath to help.

But that doesn't keep us from feeling like we need to not make waves. Even when things get done that there is no excuse for. Says Gubar:

"When an interventional radiologist managed to remove two stents from my body, I didn’t fault the surgeon who left them there to trigger a massive infection followed by an allergic response to antibiotics: I sent a thank you note to the radiologist." 

It's funny how some of us do that. And it's a problem, too, of course, especially if we want to be proactive about our own health. I think it's probably possible to do both -- take responsibility for our own health while not being a pain in the ass. You don't have to be either/or.

Which is what makes this brief essay so fascinating. I'm familiar with Gubar as  a writer. She's a very well-known English professor and scholar, and one of her big contributions is getting people to read historical novels without falling into that either/or trap. Women in novels don't have to be either angels or monsters -- they, like real people, can be complex enough to be a little bit of both.

Yes, just like real people. The lessons here are, first, that even someone who devoted her professional life to getting others to not fall into that trap can indeed fall into that trap herself. And second, we need to be proactive about out health, trust that our doctors will do their best for us, but verify that it;s been done.

With a great, big smile on our face.

Gold Standard?

 I've written before about nanotechnology using gold particles to kill cancer cells (see my post titled "There's Gold in Them Thar Tumors"), but researchers from Northwestern are using gold in a completely different way, to kill lymphoma cells in particular..

B cell lymphomas (like Follicular NHL) take up HDL cholesterol to meet their fat needs. HDL is the "good" kind, and there is some evidence that HDL levels go down as lymphoma tumor burdens go up. (There havebeen some discussions among people in my support group about this, though mine is usually pretty good during my annual physical.)

The researchers at Northwestern  are taking advantage of this. They use a particle with gold at its core.  The particle resembles natural HDL closely enough that lymphoma cells happily take it in. And that's when it does its double job: it blocks real HDL from getting to the cell, and the gold actually draws cholesterol from the lymphoma cells. It doesn't kill the cell directly, but it does help to starve it by depriving it of its favorite food.

Of course, we're pretty early in the process with this one. But it does sound promising, and the many web sites reporting on it are pushing the "no chemotherapy" angle, which is also great. I could see this as an addition to current therapies, since it might weaken lymphoma cells as they are being attacked by other treatments. Or perhaps it will be a kind of maintenance therapy?

Who knows. Like so many other treatments, it will be fun to follow its progress.

Inspiration

What an odd few days.

Not so much in my own life, which has been its usual combination of activities. Running errands with my son, catching up on work, shuttling the children to various practices, rehearsals, auditions, and events. Fixing the leak in the bathtub faucet. Trying to decide what to make for dinner. Watching the Patriots get their butts handed to them. The usual.

There's the unusual stuff. Heisman Trophy finalists with fake cancer-stricken girlfriends. And our buddy Lance, attempting an "apology" but mostly revealing what a colossal ass he is.

For what it's worth, I don't think Manti Te'o is malicious. I think he's a kid who messed up and wasn't mature enough to grasp a situation that got out of hand. It also wouldn't surprise me to find out that there's something more to the story, though I'm not sure what that it. It's a shame that a story he told, about losing someone to cancer, that served as inspiration to others, turned out not to be true.

Then there's Lance. I've lost count of how many times I said it was the last time I'd write about him.

Again, for what it's worth, I think Lance has a mental problem. It's not much different from lots of other geniuses' problems (and he is a physical genius, I would argue, even if he was doping) -- extreme focus, to the point of excluding the feelings of people around you, people who apparently cared for you. It's kind of bad when you can't remember how many people you sued because they were telling the truth about you. Unlike Te'o, Lance was malicious. But like Te'o, this one is sad, too, because a cancer story that served as inspiration turned out to be based on a lie.

I've been rolling those two stories around in my head for a few days, and I keep coming back to that "inspirational cancer story" angle, something that hasn't really been covered anywhere else. I guess it hits me because last week, when I informed my support group that it was my fifth cancerversary, I actually had a few people tell me I was an inspiration. I was surprised at first, but I quickly remembered my first post to the group: I told people how inspired I was just by reading their signature lines, which said what kind of lymphoma they had and gave details about milestones like diagnosis and treatments. It was great to see how long people had, well, been alive.

So my first reaction to being an inspiration was something like, "Inspiration? What did I do other than stay alive for five years? It really wasn't all that much work."

But maybe that's where the inspiration comes from -- living a normal life. I know there are people with cancer who wish they could  replace a shower head, or take out the trash. Just physically be able to. Or emotionally imagine that in five years they'll still be around to take their son for new sneakers. So if my staying alive is an inspiration, then so be it.

No Heisman trophies. No Tour de France victories. Just simple living.

Which, apparently, is inspiration enough.

Victoria's Secret

We've seen before what happens when people who are touched by cancer get together and start agitating. The "Beautiful and Bald Barbie" movement got results.

Now, a woman whose mom is a breast cancer survivor is asking Victoria's Secret to design and sell bras specifically for post-mastectomy survivors.

 Her online petition has close to 100,000 supporters, as I write this.

So far, no response from Victoria's Secret. (She really needs to supplement the petition with a Facebook page. You have to leverage the power of social media for these things.) It will be interesting to see what kind of response she gets, if any.

Five Years

Five years ago today, I was diagnosed with cancer.

Five years is a milestone for lots of cancer patients. In general, five years in remission means that chances are good that your cancer won't be coming back. Of course, for a Follicular Lymphoma patient, that time span doesn't mean much. Lots of people go five years with fNHL; some even go five years in remission. But it often -- usually? -- comes back. It's the burden we live with. But it does get easier with time, and, as anyone who has read the blog knows, I always hold out hope for a cure.

And I have reason for hope. It seems like once a week that I come across something that describes a new treatment, or an improvement over an old one, or maybe just an idea that might lead to something good. I write about those things, and even if they are only small studies, or promising theories, or tiny improvements, I always try to end of a note of hope. I'm being hopeful for all of you, but mostly for myself.

Hope wasn't always there, especially early on in all of this. A few days after I was diagnosed, I went to see a lymphoma specialist at Yale. If I had been kind of floating along for a few days in a numb fog -- everything happened so fast -- the Yale visit was the cold, cold water that woke me up. The ward of the cancer center that I went to was devoted to blood cancers. I sat in the waiting room -- a lovely, sun-filled room with smoked windows and lots of green plants -- among other cancer patients, some bald and without eyebrows or eyelashes, and many of them very, very young. I remember looking at the signs hanging from the ceiling, guiding people to chemo rooms and bone marrow transplant centers. My stomach clenched, and the January sun beat in through the smoked windows, and I felt really hot and really cold at the same time.

Dr. R had warned me that the specialist, Dr. C, was known for being brutally honest with patients. He said some things to me that were honest and hopeful. And then, as we were wrapping up, I looked for just one more bit of reassurance, and I repeated what Dr. R had said about people rarely dying from Follicular NHL. And I shouldn't have asked it, but I did, and I got my answer: "Oh, this will definitely shorten your life span...." And the cold water fell on me hard, and my stomach clenched a little tighter.

And then Dr. C asked for another blood test, and I waited some more among the other cancer patients, and then I got some blood drawn, and as I walked back to the waiting room so I could finally get out of there, I saw a rack of pamphlets on the different types of NHL, and I grabbed the one for Follicular, which I shouldn't have done. Because one of the sections of the pamphlet was on survival rates, and the 5 year survival rate was something that seemed ridiculously low to me -- probably in the 70 percents somewhere, I don't remember and I don't care anymore. And I thought, "What if I'm one of the 27% who doesn't make it 5 years?"

And I couldn't get that thought out of head for a week, and when I was alone, I'd break into spontaneous tears every half hour or so, thinking about my wife and kids. And sometimes it would happen when I wasn't alone and I'd find some excuse to leave the room. And I'd pray, "Please, God, just give me five years. My kids will be almost 16, 14, and 12. Maybe that's old enough for all of them to be OK." And it was a dark, dark place and the water was like ice, all around me, up to my neck.

And now it's five years.

And I want more.

And I plan to get it.

Because the cold waters eventually receded, and all of the knowledge that I sought that day, which did nothing but bring me darkness, now brings me light. I stopped paying attention to numbers that made me sad. I learned a lot about Follicular Lymphoma. I paid attention to the things that gave me hope. Like the person from the support group whose doctor told her, with the advances they'd made and expected to make in treatment, "If we can keep someone alive for five years, we can keep them alive for 50."

If it's going to shorten my lifespan, then I guess the plan had been for me to live a very long time anyway.

I certainly won't stop my quiet fight.

I've learned some important lessons in five years about being a cancer patient:

Find a support group. Give yourself access to people who have been where you are, who know what you're feeling and what you're likely to feel. People who have been through hell are wonderful about sharing stories about their trip. Make use of them.

Do not keep things inside. They fester there. Do not be afraid of what others' reactions will be when you open up. People will surprise you. Usually in good ways. But keeping it all inside is a bad idea.

It's OK to have bad days. Cancer patients have earned our bad days. And you'll find lots of people who will tell you, "You have to stay positive! Don't get down!" They're right, in a way. But some days, you just want to be sad. So take your bad day. Or even two bad days. (But three in a row is a sign that you need some help.)

Give people the benefit of the doubt. People say and do dumb things because they don't know what else to say or do, or they thought they were being helpful. There are few real jerks in the world. Feel sorry for them. Assume the best intentions in everyone else.

Understand what you are dealing with. For me, knowledge is power. I deal with things better when I know what to expect, even if there's just a small chance of it happening. Know enough to talk to your doctor. If you don't understand, ask questions.

Learn your own lessons. Stop and reflect on your experience, and take something from it that you can use later on. And always, always assume that you'll be around long enough to put whatever you learned into practice.

And laugh. At yourself.  At just how ridiculous it all is. And at cancer. Especially at cancer. Because cancer feeds off fear. Laugh at cancer so hard that little bits of spit fly in its face.

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Thank you all for reading, and thank you all for being there for me.

Tomorrow is the first day of year 6.