Tuesday, January 31, 2012

Someone Else's News

Salon published a piece today by Mary Elizabeth Williams called "I Have Your Results."

Williams is a regular columnist for Salon, often writing about cancer -- the general topic, and her own experiences with stage 4 melanoma. I think Dr. Siddhartha Mukherjee, author of The Emperor of All Maladies, might be the best writer about cancer from a doctor's perspective that we have. But I nominate Williams as our best writer from a cancer patient's perspective. (Modesty would forbid me from nominating a certain someone else.)

Williams does a nice job of describing the emotional experience of having cancer, while also giving a larger scientific or cultural perspective. For example, in this piece, she discusses clinical trials and immunotherapy while also giving us a glimpse into getting a CT scan ("I had been at MSKCC just that morning, guzzling sickly sweet, room-temperature liquid and holding my breath inside the CT scan machine") and waiting for its results, and connecting to other patients, feeling their joy and pain, because you know just what they're going through.

This particular piece provides a nice mini-drama, the kind that good writers can pull off. There's a link at the end that will let you read more of Williams' stuff, which I recommend.

Sunday, January 29, 2012


I got some very sad news this weekend: one of my friends in the support group died. Her name was Mary, but she went by the handle "Tarzan."

I don't usually write about sad things in this blog. I've always seen it as a place for hope and optimism. But I need to write about Mary, so you'll just have to excuse me this one time.

Mary and I were both diagnosed with Follicular NHL at about the same time, and we joined the support group within a few weeks of each other. In her introductory post, she explained why she was calling herself Tarzan: her oncologist had told her that the good thing about fNHL was that there were so many treatments, and more on the way, that there would always be something else out there to try. Like for Tarzan swinging through the jungle, there would always be another vine to grab onto. Mary's explanation really spoke to me, and it became a great source of comfort for me during those difficult first few months after I was diagnosed. (I even wrote about it in the blog.)

It's rare that you can feel someone's passion and energy just from their writing, but you could feel it with Mary's (and I'm someone who knows and appreciates writing). Her words just radiated light and warmth.

Mary and I started sending private messages back and forth to each other every now and then, mostly short notes of encouragement. She was always very hopeful. the about nine months after we both joined, Mary was around a lot less. She wrote to me to say that she was still checking in with the group, but devoting her considerable energies elsewhere, mostly focusing on her husband, kids, and grandkids. She lived in Colorado and loved the outdoors, and I think she wanted to spend less time in front a computer and more time in front of a trout stream with her fly rod.

A few months later, Mary checked in again with an update. She'd had a heart attack around Christmas. She was expected to recover just fine, and it certainly never slowed her down. She and I continued to write to one another occasionally. She used to call me her "Little Bro."

Early last year, Mary found out she had lung cancer, and as I checked in on her, she would still respond with her hope and positivity, but it didn't sound like things were getting better. She switched treatments a couple of times, and each time she was sure that the next treatment was going to do the trick.

The online tributes to her are many and heartfelt. Apparently she was just as active and encouraging in her online lung cancer support group as she was in our lymphoma group. And I certainly wasn't the only one she corresponded with privately, as I came to find out. She touched a whole lot of people.

And the irony of it all is that while we met in a lymphoma support group, her fNHL didn't really physically affect her at all. She watched and waited for four years.

I don't think I can step back right now and intellectualize all of this, and write about how great it is to be a part of an online support group, or write about the importance of...I don't know what. I'm feeling right now, more than thinking.

Mary had a blog called "So Much More" (which I never knew about -- like me, she never mentioned her blog to the whole support group), and "so much more" was kind of her catch phrase -- there's so much more to life than cancer, so much more to do and try, so much more love to give.

I'm going to end with Mary's words. Another member of the support group who was very close to Mary posted some quotes from her notes to him. He didn't think she'd mind if he shared them, and I'm going to take a chance and make the same assumption, that neither one of them would mind if I shared.

This is a blog about hope, after all.

"Our lives are so short on this earth, it doesn't matter in whatever way we live it;
I want others to learn to be conscious of every moment...
enjoy life and try to teach others to enjoy it...
If we're 95 or 30 there is so much more: things to learn, to laugh about, to cry over,
to experience, to see, to feel and hear and taste.
Learn to savor each sense of all we are -- and can help others to be." 

Friday, January 27, 2012

WHO grades

This month's British Journal of Haematology has an article titled "Clinical Significance of the WHO Grades of Follicular Lymphoma in a Population-Based Cohort of 505 Patients with Long Follow-Up Times."

As titles go, it doesn't exactly roll off the tongue like Mourning Becomes Electra, but it does have some significant findings. First off, a word about WHO (World Health Organization) grading systems: for Follicular NHL, each diagnosis is classified by a stage (where in the body the lymphoma is located) and a grade (a measure of how aggressive the lymphoma is). The grading classifications have changed over the years, but the most recent system assigns each lymphoma as grade 1, grade 2, grade 3a, or grade3b. This study tries to help solve the controversy over the 3a/3b distinction.

The researchers found, in examining 505 biopsy samples, that grades 1,2, and 3a can be considered indolent (slow-growing) and incurable. Grade 3b, however, is found to behave much like Diffuse Large B-Cell Lymphoma, a much more aggressive NHL. It also found that, unlike the other stages, 3b is curable for many patients, assuming they are treated early and aggressively, with anthracycline-based treatment (like CHOP).

This seems to back up one way of thinking about the 3a/3b distinction, the way that treats them as being different. There are still others who believe 3a and 3b are more alike than different, and that probably won't change.

It seems to me that there will be some other important things that come out of this.

First has to do with treatment. In addition to 3b, like DLBCL, being successfully treated with CHOP, the study also found that 3a responds well to Rituxan, like the other indolent lymphomas (grade 1 and 2). Put those two together and I think you'll have even more movement away from CHOP as a standard treatment for fNHL, unless it is the more aggressive 3b. It will probably be more and more reserved as a treatment for transformed fNHL.

Second, I think the study will provide even more evidence for distinguishing between fNHL types on a genetic level. The authors point out that the genetic change that creates fNHL (chromosomes 14 and 18 switch with one another) is found in 73% of 3a cases, but only 13% of 3b cases. On the other hand, other chromosomal changes are more likely to be in 3b. There's lots of science there, but the point is, if you look at the diseases at the smallest level, 3a and 3b seem to be distinct. I see this confirmation as important for personalization purposes: the more we know about what separates the two types, the more likely we can tailor effective treatments to the patients who exhibit those properties.

Of course, as someone who is mostly grade 1 with a little grade 2, this study doesn't directly affect me. But I do think it has some important implications for the Follicular NHL population as a whole.

Wednesday, January 25, 2012


The good folks at Patient Power, who do such a fantastic job of providing information about cancer and other diseases, have put up a new video from last month's ASH conference. The video features an interview with Dr. Brad Kahl from the University of Wisconsin's cancer center, on the results from the RESORT study.

I discussed the results of this study about a month ago; it's been recognized as one of the major pieces of news to come out of ASH.

The RESORT study is the one that determined that, for most patients, giving Rituxan as needed is preferable to Rituxan maintenance. That is, after initial treatment, it's probably better for Follicular NHL patients to hold off on treatment until it is needed, rather than having Rituxan every 6 months to keep the lymphoma at bay.

Dr. Kahl is very open about the study: he admits that there is little difference between the two approaches, and that it was be very possible to look at the data and come to the opposite conclusion.

He also says that, of course, that decision is entirely dependent on the individual patient. For example, he says doctors have to measure a patient's coping strategies and abilities -- how mentally or emotionally prepared they are to watch and wait. As I've said before, I was OK with the treat-as-needed approach that Dr. R recommended, just as I was OK with watching and waiting. My temperament would allow it. But some patients need something more aggressive, fulfilling their need to do something. There are so many right answers when it comes to fNHL -- it's a curse sometimes, but it can be a blessing, too.

As usual, Patient Power does an excellent job of getting a researcher to discuss difficult subject matter in fairly simple terms. All credit goes to Andrew Schorr, who is such a fantastic host, interviewer, and patient advocate.

Sunday, January 22, 2012

Cool HS Student

CBS News last week reported on a high school student from California named Angela Zhang who might have come up with a cure for cancer.

How's this for a science project? When she was a freshman, she read lots of stuff about bioengineering. Over a couple of years, she developed a theory about cancer cells and nanotechnology, and eventually got the chance to devise an experiment to test it out. Turns out her theory was right.

Her experiment involved mixing a cancer medicine with a polymer, which would cover the medicine. The polymer is then attached to a nanoparticle (an extremely tiny particle -- I've discussed this before), which then attaches to the cancer cell. These nanoparticles show up on MRIs, so the caner cells can be identified. Then, an infrared light is shone on the nonoparticles, causing the polymer to melt, exposing the medicine. The medicine is thus delivered directly to the cancer cells (since they have the medicine/polymer/nanoparticle attached to them) while sparing the healthy cells nearby.

The method has been tested on mice, with excellent results.
one of those promising nanotech methods that may prove useful in the near future. What they all have in common is an attempt at delivering some treatment directly to the cancer cells, in a wide and interesting variety of methods.

Angela won a national science contest for her project -- $100,000 for first place. She bought a bunch of purple shoes with some of the money, which is kind of awesome, since purple is the color for cancer awareness (though that's not why she chose purple).

Well done, Angela.

Friday, January 20, 2012

PBS Cancer Video

PBS's News Hour has recently been running a series on cancer. The piece that I found most interesting is called Cancer Treatment: Are Personalized Molecular Profiles in our Future, available as a video clip 9about 9 minutes long).

I've mentioned personalized treatments quite a bit; they really do seem to be the future of cancer research. I think this video does a nice job of explaining how personalized treatment (especially those that target genetic abnormalities) actually works.

One segment involves interviewing a woman who had her tumor cells implanted in  a mouse. As new treatments become available, they are first given to the mouse, so doctors can study the tumor's reaction to the treatment before they are given to the patient. Pretty fascinating.

The doctor that is the main subject of the video says he envisions a day when cancer patients can go to a pharmacy, give the pharmacist a genetic profile of the tumor, and receive some treatment right there. That would be a wonderful thing, indeed.

Wednesday, January 18, 2012

Bald Barbie Update

Controversy over Beautiful and Bald Barbie, a Facebook page that I had described a few days ago, devoted to encouraging Mattel to issue a bald Barbie doll. While the creators of the FB page aimed the Barbie at young girls who have hair loss due to cancer treatments and other causes, it was clear from the 100,000 people who Liked the page that such a Barbie would find an audience with adult survivors as well.

The new controversy comes from, of all place, the American Cancer Society website, specifically from a blog post written by Andrew Becker, the ACS's Director of Media Relations (in other words, ironically, their head public relations guy). On Friday, Becker wrote a blog post addressing the Bald Barbie issue, and he was very much not in favor of it. He likened the Bald Barbie to rubber bracelets and other attempts to "raise awareness," which he finds hollow. He believes that the money spent on such a doll would be better donated to research, not "awareness" campaigns.

But one paragraph really struck a chord -- a very bad chord:

Childhood cancer is exceedingly rare. I would also argue that cancer is rare among the age group of women likely to have daughters young enough to play with Barbies. Women have about a one in 50 chance of developing any kind of cancer before the age of 40 . Which brings me to the claim that bald Barbies can help improve the self-image of little girls who are faced with having lost their hair, or seeing their mothers lose their hair. If they are mass marketed, many of these dolls will end up in the hands of girls who luckily aren’t likely to be touched by cancer in themselves or their mothers. But could they end up being terrorized by the prospect of it in a far outsized proportion to their realistic chances? There is no reason to create this sort of fear. It’s why we don’t see advocates calling for lightning strike dolls.

Lots of people -- lots of people -- took issue with the comparison of childhood cancer to lightning strikes, and the idea of a "lightning strike doll" was seen by many as belittling the issue of childhood cancer. There's also the suggestion that kids would be "terrorized" by seeing someone bald from cancer treatments. (That's not exactly what he's saying, but it's how a lot of people who are dealing with childhood cancer interpreted it.)

Becker has removed the original post (though it was copied and commented on by lots of bloggers, including this one), and has issued an apology. He said that his intention with the post was to "raise questions about activism and social media around disease," rather than make it seem like the ACS didn't think children with cancer mattered.

Wow. So much going on with this.First of all, I'm stunned that a PR professional would write something so...dumb? Unaware? I'm not really sure what the word is that I'm looking for. I have no idea what the relationship is between the ACS and the Susan Komen folks, but I'm guessing it isn't very good. His comments seem to be an attack on those who promote "awareness" over everything else, especially research. What a very strange way of making that point, though.

I find it pretty interesting, too, that he wrote the post on Friday, which is when I wrote my own comment on the Beautiful and Bald Barbie Facebook page. But I wrote mine late enough to see what kind of reactions people were having to the Barbie. I don't know when Becker wrote his, but he clearly hadn't seen the kind of support, and the kind of reasons, people were giving to the cause. It went way beyond simply kids with cancer. Barbie, as I noted Friday, is a symbol of all kinds of things, and a bald Barbie plays with that symbolism in really important ways. He missed all of that.

Finally, I find it fascinating that a blogger -- someone steeped in social media -- had so little understanding of how social media works, and how it can be useful. The Public Relations expert had 100,000 things to think about, had he looked at the Facebook page. He would have had all kids of opportunity to gauge reaction. It's an incredible case study in the way social media works -- and how it can go horribly wrong.

Sunday, January 15, 2012

Happy Cancerversary To Me

Four years.

Hard to believe.

I'm titling this "happy," even though my wife says it's crazy to even think about this day in those terms. When I woke her this morning, I asked if she was going to wish me a happy cancerverary. "Oh God," she said. "You're going to want to celebrate, aren't you?" But, like I tell her every year, we're not celebrating That Day. We're celebrating TODAY, and the other 1459 days that have come and gone since That Day.

One thousand, four hundred and sixty days? Wow. I've thought about cancer every day, for 1460 straight days. I'm more than half way to being the Cal Ripken of cancer.

It's true -- I do think about it every day. I can't not think about it -- I check in with my support group every day, and on those days when I can't, I think about not being able to. I write in this blog every two or three days, and plan out what to write on the others. I think about cancer every day. That doesn't mean I think about having cancer - that's walking on the edge of victimhood, and you all know how I feel about the term "cancer victim." It's only on days like today that I really focus on having cancer, and what it all means.


Last weekend, very much unlike this frigid weekend, we had one of those rare, upper-40's January days, and I took the dog for a nice, long walk. I put my iPod on "shuffle," and just listened to whatever came up.  One song that came up early in the walk was "Superman," by Five for Fighting. It's a nice song:

The lyrics are a monologue from Superman. He kind of laments having to keep up the appearance of being a Man of Steel, and in a vulnerable moment, admits that he's really just a man in a silly red sheet. I remember downloading this song a few months after being diagnosed, because some of the lyrics really hit me:

I wish that I could cry
Fall upon my knees
Find a way to lie
About a home I’ll never see

It may sound absurd…but don’t be naive

Even heroes have the right to bleed
I may be disturbed…but won’t you concede
Even heroes have the right to dream
And it’s not easy to be me.

Up, up and away…away from me

Well it’s all right…You can all sleep sound tonight
I’m not crazy…or anything… 

I could -- and can still, in some ways -- feel Superman's pain. I think it's a Guy Thing; we're not supposed to be vulnerable, at least on the outside, because there are too many people depending on us, and a show of vulnerability ("I wish that I could cry") is going to trickle down, and it's all going to crumble. That's how a lot of men feel in general, and lots of cancer patients feel that way even more so. But really, there's nothing Super about us.  I think the end of the video kind of bears this out.

That's what I was thinking about as I walked the dog and listened to my iPod. I feel a little bit less of that these days, less of a need to be a Man of Steel. But that vulnerability, and a fear of being -- or seeming -- vulnerable never really goes away.


I've always loved music, and I've always found a way to use music to help me emotionally, whether it's to build myself up, or revel in a good dark day, or just help me understand whatever it is I'm feeling, but don't fully understand. Sometimes I'll latch onto a song and not know why. Sometimes it's just because I like the song, but sometimes it's because it's helping me work through something. "Superman" was like that.

It's not on my iPod, but another song  from my early cancer days came into my head as I listened to "Superman." It's "The Rainbow Connection," sung most famously by Kermit the Frog, but covered by a whole bunch of people. For a while, I was listening to this almost incessently. It started at my daughter's dance recital, about five months after I was diagnosed. She was not quite 7, but she was at an age when she and her dance classmates were no longer babies. No more knock-knees and pot bellies. They danced a ballet piece to Kenny Loggins singing "Rainbow Connection":

And even though they were only six or seven years old, they were graceful, with their long skirts and flowers in their hair, and their arms flowing as they danced. I watched her and, in the dark, tears  streamed down my face. Part of me just marveled at how much she was changing, so quickly, and part of me cried, five months after being diagnosed, wondering how many more times I'd get to see her dance, or dance with her, not really understanding yet what this disease was all about. And part of me cried because...I didn't know why.

For weeks after that recital, I listened to "Rainbow Connection" over and over again. And one verse kept haunting me:

Have you been half asleep? And have you heard voices?
I've heard them calling my name.

Is this the sweet sound that calls the young sailors?
The voice might be one and the same
I've heard it too many times to ignore it
It's something that I'm supposed to be...

 And I'd wonder, over and over again, What am I supposed to be? If cancer changes who you are -- and it's pretty damn hard to be the same person once you hear those words from a doctor -- if I'm someone new, what am I supposed to be? If those voices are calling my name -- and never mind who the voices belong to -- what are they calling me for?

"Superman" asks the same question, even if it doesn't come right out and say it. If I'm not really Superman, if it's all just appearances, then who am I really? If I get called upon to stop a bullet or a train, what's going to happen?

I spent a very long time, when I was first diagnosed, trying to answer those questions. Heck, I spent a long time trying to formulate those questions. I didn't even know which questions I was being asked....


Four years later, I still don't have answers to those questions.

The difference, now, is that I don't ask them as much, because I know the answers don't really matter. The answers will come to me, sometime, somehow. Or not.

And I guess that's what's changed over four years, not so much about me, but about how (and why, and when) I think about having cancer. My response isn't so emotional anymore. I've learned so much about cancer, and about Follicular Lymphoma, that I don't need to be emotional. I can reason things through, understand where I am and where I might go next.

So, the answer to What am I supposed to be? is irrelevant.

The more important question is, What's next? I mean that in a couple of ways. First, I know that there's a next phase to my cancer, and I don't dread it. I have plans for dealing with it. Lots of plans. And second, I mean, what's next in my life, apart from cancer? I'm living my life, making long-term plans, not worrying about whether or not I can possibly carry them through.

And my music now isn't about asking questions, or worrying about answers. If I listen to Cancer music at all, it's got a very different focus. A few weeks ago, someone in the support group asked for suggestions for songs that inspired. This is the one I offered:

The song isn't about asking questions -- it's about taking action.

It's about getting to the next.

Friday, January 13, 2012

Cancer Barbie?

A fascinating controversy has been brewing on the internet for the past few days: the idea of creating a bald Barbie doll.

The whole idea gained some publicity a few days ago (at least, that's the first I had heard of it) when the Amarillo Globe-News published a piece called "Mattel Pressured to Produce a Cancer Barbie." I think the title is a little strong, but it describes a Facebook page called Beautiful and Bald Barbie! Let's See if we can get it Made, created by some folks who want Mattel to make a bald Barbie doll, "to help young girls who suffer from hair loss due to cancer treatments, Alopecia or Trichotillomania." They feel like the dolls could help girls with medical hair loss cope better, and they also think Mattel should create scarves and hats to go with it.

I'll be honest -- when I read the article yesterday, I wasn't all that excited about the idea. I certainly get that girls would like to have a doll that they can identify with (I can see that in my own daughter, just with the regular dolls she has always enjoyed playing with). But it seemed more gimmicky than anything, I guess. I couldn't imagine it would really have that great an audience.

But then this afternoon I read a piece on Salon.com by Mary Elizabeth Williams called "Why Barbie Should Go Bald." I really like Williams as a writer, especially as someone who writes about cancer from a patient's perspective. She brings up some excellent points about the Beautiful and Bald Barbie, particularly that Barbie is such a powerful symbol -- something that I, as a man, just didn't get.

In the brief time I have been writing this post, the Facebook page has added about 800 Likes, with just under 100,000 total. Clearly, I underestimated the number of people who would be interested in such a doll. It's obvious that a Bald and Beautiful Barbie would go a long way with not just little girls, but probably with lots of cancer patients, especially women, who grew up with Barbie and see her as that kind of symbol of perfection that Williams talks about. A Barbie who is bald -- and yet, still unavoidably perfect -- would be very powerful indeed.

The big question is, would Mattel ever see it that way? Would they be willing to gamble with Barbie's image?

I like to think this is not something that's going to fade away in a week. It will be fascinating to see how Mattel reacts (beyond the polite reaction that Williams reports on). Their reaction will say a lot about a lot of things: cancer, our cultural notions of beauty, and the power of social media. Stay tuned....

Wednesday, January 11, 2012

Nodes of Gold

Bad news out of England on Monday: Tony Iommi, lead guitarist for the band Black Sabbath, has been diagnosed with "early stage lymphoma" (nothing more specific than that), and has begun treatment.

Sounds like it's time for a new installment of Nodes of Gold.....


It's been a while, so I'll remind you: Nodes of Gold is a (not really any longer) regular feature in Lympho Bob, highlighting the life and triumph of someone famous who was diagnosed with lymphoma of some sort. F. Scott Fitzgerald said that the rich are just like you and me. And indeed, they are -- sometimes, unfortunately, they get lymphoma. Past Nodes of Gold honorees include Mr. T, actor/comedian Arte Johnson, golfer Paul Azinger and football player Joe Andruzzi.

And now, Tony Iommi.

Iommi is lead guitarist for Black Sabbath (one of my favorites when I was younger), a band probably best known for having Ozzy Osbourne as its lead singer from 1969 to 1977, then again in 1997. Sabbath has had 22 members over the years, but Tony Iommi has been a constant -- the only member of the band that has stayed with them for all of their 33 years. That's loyalty.

Sabbath's lead guitarist, Iommi  is considered a pioneer in heavy metal guitar, creating riffs like this one:

In fact, in 2004, Guitar World magazine named him the greatest metal guitarist of all time.

He also, very briefly, spent some time as guitarist for Jethro Tull, pre-Sabbath.

But despite his loyalty, he did have some difficulties. Like, for instance, in 1992, Iommi was arrested while on tour. Bandmate and pal Ozzy Osbourne bailed him out -- or so Ozzy claimed later, when he sued Iommi for the $75,000 he posted for him.

And a personal connection: a couple of years ago, I was experiencing a strange dizziness, especially in the mornings. I didn't know if it was lymphoma-related, and I eventually had an MRI, which turned out to be negative. The doctor figured it was probably stress-related, caused by lots of jaw-clenching, which is one of those side effects of having cancer. Anyway, the Ear doctor did a whole bunch of tests, and it was also determined that I had some upper-register hearing loss. We agreed that this can be directly attributed to listening to so much Iommi-fueled Black Sabbath, through Radio Shack headphones, when I was 13. Especially this song:

So, Tony Iommi, I'm very sorry to hear that you've joined the club that no one wants to be a member of. I'm sure it's little consolation, but you do now officially have Nodes of Gold.

Hope the treatments go well.