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.

Antioxidants Bad?

Dr. James Watson, winner of the Nobel Prize for his co-discovery of the structure of DNA, thinks antioxidants are bad.

He mostly thinks they're bad when they are taken with chemotherapy, and can actually do the opposite of what they are supposed to do. We think of antioxidants as good things, of course. Antioxidants work by eliminating substances that mess with the DNA of healthy cells, which would otherwise cause problems. However, says Dr. Watson, chemo is often one of those substances. in other words, antioxidants can't distinguish between substances that might damage healthy cells and substances (like chemo) that might damage cancer cells.

This doesn't mean that we need to stop eating fruits and vegetables when we're taking chemo. It does mean, says Watson, that maybe a conversation with an oncologist is in order if you're taking lots of extra vitamin E or some other known antioxidant.

This isn't a new idea. I've written about it before. What is new -- at least, it's probably never been suggested by someone of Dr. Watson's stature -- is the idea that antioxidants might actually cause cancer. Wouldn't that be a kick in the head? Popping all those pills to stay healthy, and it does the opposite? I know it wasn't until I was taking fish oil and drinking green tea for a year that I was diagnosed.....

Ok, ok, let's not get carried away. There's no evidence right now to suggest that antioxidants in and of themselves cause cancer. But Watson is calling for researchers to at least start looking into it. He's made a career out of shaking things up in the Biology/Cancer/Genetics community, and he's certainly earned it. (My high school Biology teacher, a Christian Brother, used to genuflect when he said Watson's name, so I've kind of had a lot of respect for him since I was 14.)

Maybe a little shake up is what we need?

Math

Interesting, short piece on the healthcare blog at Forbes.com. The title is great -- "What Homer Simpson Can Teach Oncologists about Math" -- though it's a little bit misleading. The Homer thing is kind of tossed in at the end, but the larger point is more important.

Read the article, especially the first part, which involves a little bit of math. I confess: I got it wrong the first time, and right the second time, when I went back and looked at it a little more slowly and deliberately.

Which is the point, I think. Oncologists throw numbers around (especially numbers involving things like success and survival rates) in ways that make them difficult to understand. Partly, it's because our math education is so poor in this country; it's impractical and hasn't changed in decades. That problem gets worse when people don't pay attention, which is often. And it's worse still when people are dealing with an emotional issue; it's hard to be slow, thoughtful, and rational when some one says the word cancer; everything that comes after that word will be filtered through something like the Oh dear God I'm going to die that runs through our heads.

So it's important that oncologists are the ones who slow down.

Almost every time I've been depressed -- truly, deeply depressed, not just sad -- about cancer, it's been triggered by numbers. Having a trusted authority say to us, "Here's a number. Now here's what it means" would go a long way toward making us feel just a little better.

Of course, it's not entirely on them. We need to educate ourselves a little, and understand what numbers mean on a basic level. if we're going to obsess and do internet searches for statistics that affect us, then it's only fair that we take some responsibility for figuring out what they mean, isn't it?

Start with Stephen Jay Gould's "The Median Isn't the Message." If you read carefully, you might be able to end there, too.

Videos

Several cancer-related videos have come across my screen over the last few days. I thought they were worth sharing.

The first is a profile of Tig Notaro, the comedian who found out she had double breast cancer and went on with her show that same night, opening with "Good evening, hello, I have cancer." It was a brave act, as I have written before, particularly when one considers that, not all that long ago, people didn't talk about cancer, especially breast cancer. Yahoo! Shine featured her in their "Secrets to Your Success" series. She talks about her cancer (which is currently in remission) and how she dealt with it through humor. A happy update.

The second is a post-match speech from Scottish tennis great Andy Murray. After winning the Brisbane International, Murray thanks everyone, and then dedicates the trophy to his friend and fellow tennis star Ross Hutchins, who was diagnosed with Hodgkin's Lymphoma just a few days ago. The lymphoma caught my eye and ear, but I also have a soft spot for great competitive athletes who can put their competitiveness aside when the game is over.

Finally, a woman in Pennsylvania, who had detected her dog Tinkerbell's breast cancer three years earlier, had the favor returned when Tinkerbell clawed at her chest incessantly. She went to the doctor, and found that she, too, had breast cancer. Coincidence? Maybe. But there are trained cancer-detecting dogs out there, including George, the standard schnauzer.

This is a good time to remind everyone that my own beloved dog Strudel is also a standard schnauzer, though she did nothing to help find my own cancer. Not that I'm bitter. I'm just saying, it would have been nice for her to earn her keep a little. Instead, as I write this, sitting on the couch, she is putting her heavy head on my hand, keeping me from typing. I doubt I have cancer of the hand. More likely a little leftover dinner on my shirt that she's trying to get closer to.

Visit with Dr. R

Had my 4 month check-up with Dr. R today. Not much to tell -- things look good.

Blood work is "perfect."

He asked if I had any symptoms to report, so I gave him a couple. My asthma has been acting up (irrelevant), and I've noticed a couple of bumps on the underside of my upper arm. He examined them, and thinks, given their location, that they are unlikely to be lymph nodes. It's possible that they are lymphoma-related, a presentation of the disease under the skin (which is certainly not unheard of). They are more likely to be small fat deposits. (The only surprise there would be that my fat deposits are small.) It's nothing he is concerned about. If more bumps show up, maybe we'll do a scan. But nothing to do for now. Just more watching and waiting, which I am very sued to doing.

Small swelling in my lower abdomen/hip bone, where my original problem was, but that hasn't changed in a year at least.

So, the upshot is, everything continues to be stable.

And stable is good.

Four more months and we'll have another look....

Patient Power

Patient Power, the excellent cancer patient advocate organization, has an ASH follow-up that focuses on RadioImmunoTherapy.

 The video features Dr. Ajay Gopal of the Seattle Cancer Care Alliance, who oversaw a study that used RadioImmunoTherapy as a conditioning agent for transplants. In other words, a bone marrow or stem cell transplant needs some treatment to wipe out cancer cells before healthy cells are reintroduced into the patient's body. This study used a combination of chemotherapy (which is traditional) and RIT (which is not) to condition.

The trial involved 107 patients, and had side effects comparable to previous regiments. But the results were an improvement -- 2 years after transplant, almost 80% of patients had survived.

The results are very preliminary, but, as Dr. Gopal describes, are very encouraging for a number of reasons.

The video is available at Patient Power.

PAL report

Patients Against Lymphoma (PAL) published their 2012 annual report a few days ago.  It's worth reading.

PAL is the nonprofit that sponsors Lymphomation.org, a web site that I have described before as the first place any lymphoma patient should visit if they want information. It has information about different types of lymphoma, treatments, and research, as well as links to patient experiences, support groups, information for caregivers, and lists of lymphoma specialists. It's an incredible resource, one we're lucky to have.

The annual report provides evidence of its popularity and effectiveness: more than half a million different visitors last year, with just under 11 million hits. I'm glad people have found this resource.

PAL's missions include encouraging research and supporting patients, and as the annual report makes clear, those missions overlap when it comes to clinical trials. Encouraging participation in trials helps meet the aims of lymphoma research, helps current patients find new treatments that aren't yet widely available, and of course helps future patients by ensuring that new treatments are safe and effective. PAL is very big on clinical trials, and they rightly refer to patients who agree to be a part of trials as "Heroes." They take risks to help people they don't even know. (Which is pretty much what Superman and Wonder Woman do, isn't it?)

The link above will take you to part I of the annual report, where you'll find a focus on clinical trials: PAL's support of them, and even links to some of the lymphoma-related trials going on. It's certainly worth a look. And its worth considering whether or not a trial would be beneficial (see the link in the report for whether or not it's something to consider).

I'll try to link to part II when it's available.

Indolent Lymphomas

Another nice entry from Dr. Jeff Sharman's blog on CLL and NHL. I've linked to Dr. Sharman before; he does a great job of providing very patient-friendly explanations about lots of NHL-related topics.

His most recent entry focuses on Indolent (slow-growing) Lymphomas and the similarities and differences among them.  Dr. Sharman discusses Follicular Lymphoma first, it being the bestest of all the lymphomas. (And the most common indolent lymphoma.) He then devotes some time to Marginal Zone Lymphoma, Small Lymphocytic Lymphoma (and its close cousin, Chronic Lymphocytic Leukemia), Mantle Cell Lymphoma, and Waldenstrom's Lymphoma. As his descriptions make clear, they all have some similarities, but some differences as well.

I especially like his description of how Follicular Lymphoma arises. Doing its job and something goes wrong. See the link for a full explanation.

I enjoy reading his blog and look forward to many more of his clear explanations.

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Today is my 20th wedding anniversary, so I want to give an "I love you" to my wife, who embodies the whole idea of "for better or for worse, in sickness and in health" in the way she has loved and supported me through all of this. (And for the way she puts up with some of the methods I use to deal with it....)

I look forward to another 20 wonderful years with you, darlin'.