Well, it's time to say Goodbye to Lymphoma Awareness Month. I thought we'd close it out with a focus on Follicular Lymphoma.
Literally. The Lymphoma Research Foundation website published "Focus on Follicular Lymphoma" featuring an interview with Dr. Stephanie Gregory from Rush university Medical Center.
There's nothing earth-shattering in the interview; she's asked questions about diagnosis, current treatments, future treatments, that kind of this. It's a nice summary of the state of things for fNHL.
And I guess that's as good a way to end Lymphoma Awareness Month as any. Take stock of where we are, and think about where we're going.
As for me? I'm too busy for too much reflection right now. And that's a good thing. Work is good. The family is happy. My health is relatively good. I'm ready for the future.
Sunday, September 30, 2012
Friday, September 28, 2012
Wednesday, September 26, 2012
Watching and Waiting in the News
The Journal of Clinical Oncology's latest edition includes an article on the effectiveness of Watching and Waiting as an initial treatment strategy for low-tumor burden Follicular Lymphoma.
(I can't get the link to the article to work, so here's a link to a piece from Doctor's Lounge that reports on the JCO article.)
Basically, the article says that Follicular patients that don't have symptoms, and have more than 4 node clusters affected, are more likely to need treatment sooner than those with fewer affected nodes. The study compared people who watched and waited to those who had treatment right away with Rituxan or Rituxan plus something else. The researcher looked at FFTF rate -- Freedom from Treatment Failure -- how long it took for their initial treatment to stop working. In the study, 79% of Watch-and-Waiters went four-years before Treatment Failure, while 69% of the Rituxan group went four years.
So, more evidence that Watching and Waiting is OK.
Which, frankly, is fine with me. I don't need to know that W&W is better than being treated right away. I've been there already. But I do like hearing (yet again) that it's a valid option. For the right person, W&W can be a good thing.
For the right person. That's key. In the same issue of the JCO, Lymphoma Rock Star Dr. Bruce Cheson writes an editorial called "Waiting is the Hardest Part" (for some reason, I am able to link to this JCO article). Dr. Cheson takes a clinician's view of W&W, pointing out "One of the more challenging conversations to have with a patient is one presenting a new diagnosis of an indolent and treatable type of cancer that is incurable but for which the plan is not to offer treatment but merely follow-up with the patient every few months to see what happens." Challenging because, for some people, W&W is a relief -- we can hold off treatment for a while. For others, it's a burden -- emotional, psychological, spiritual, just waiting for "the crescent blade in Edgar Allen Poe’s 'The Pit and the Pendulum' ... swinging overhead with its ominous descent 'inch by inch, line by line, ... at intervals that seemed like ages'."
(A Poe reference in a medical journal. That's why he's a rock star.)
It's an apt reference, though, as we watch and wait for the bad thing to come, that will be our doom. In the end, says Cheson, watching and waiting is not "intellectually satisfying." I assume he means for the doctor. Once we all get over the emotional part of things, and look at the situation rationally, then W&W makes sense. But "rationally satisfying" isn't "intellectually satisfying." What we need, if we really want to get rid of W&W, is a better option -- one that comes with minimal side effects, and the promise of a cure.
And, as he points out, we are moving in that direction. Combing Rituxan with other "biologic agents" (other variations of monoclonal antibodies that target different surface proteins than Rituxan targets) are showing some good results. So are the various kinase inhibitors that are being developed.
So why choose Watch and Wait? The main reason, says Cheson, is "optimism." The belief that what might come will be better than what we have now, and holding off treatment will mean more options later.
I like that. Even more than I like the Poe reference.
(I can't get the link to the article to work, so here's a link to a piece from Doctor's Lounge that reports on the JCO article.)
Basically, the article says that Follicular patients that don't have symptoms, and have more than 4 node clusters affected, are more likely to need treatment sooner than those with fewer affected nodes. The study compared people who watched and waited to those who had treatment right away with Rituxan or Rituxan plus something else. The researcher looked at FFTF rate -- Freedom from Treatment Failure -- how long it took for their initial treatment to stop working. In the study, 79% of Watch-and-Waiters went four-years before Treatment Failure, while 69% of the Rituxan group went four years.
So, more evidence that Watching and Waiting is OK.
Which, frankly, is fine with me. I don't need to know that W&W is better than being treated right away. I've been there already. But I do like hearing (yet again) that it's a valid option. For the right person, W&W can be a good thing.
For the right person. That's key. In the same issue of the JCO, Lymphoma Rock Star Dr. Bruce Cheson writes an editorial called "Waiting is the Hardest Part" (for some reason, I am able to link to this JCO article). Dr. Cheson takes a clinician's view of W&W, pointing out "One of the more challenging conversations to have with a patient is one presenting a new diagnosis of an indolent and treatable type of cancer that is incurable but for which the plan is not to offer treatment but merely follow-up with the patient every few months to see what happens." Challenging because, for some people, W&W is a relief -- we can hold off treatment for a while. For others, it's a burden -- emotional, psychological, spiritual, just waiting for "the crescent blade in Edgar Allen Poe’s 'The Pit and the Pendulum' ... swinging overhead with its ominous descent 'inch by inch, line by line, ... at intervals that seemed like ages'."
(A Poe reference in a medical journal. That's why he's a rock star.)
It's an apt reference, though, as we watch and wait for the bad thing to come, that will be our doom. In the end, says Cheson, watching and waiting is not "intellectually satisfying." I assume he means for the doctor. Once we all get over the emotional part of things, and look at the situation rationally, then W&W makes sense. But "rationally satisfying" isn't "intellectually satisfying." What we need, if we really want to get rid of W&W, is a better option -- one that comes with minimal side effects, and the promise of a cure.
And, as he points out, we are moving in that direction. Combing Rituxan with other "biologic agents" (other variations of monoclonal antibodies that target different surface proteins than Rituxan targets) are showing some good results. So are the various kinase inhibitors that are being developed.
So why choose Watch and Wait? The main reason, says Cheson, is "optimism." The belief that what might come will be better than what we have now, and holding off treatment will mean more options later.
I like that. Even more than I like the Poe reference.
Monday, September 24, 2012
Marijuana and Cancer
Medical marijuana has been available for a while now, and it is known to relieve symptoms associated with some diseases and with certain treatments. But now some researchers are showing that compounds in marijuana might actually stop cancer cells from growing.
Two researchers at California Pacific Medical Center, after 20 years of research, found that the compound called Cannabidiol affects a gene called ID-1, present in certain aggressive cancers. The Cannabidiol stops cancer cells from growing, and stops the tumor from creating new blood vessels to feed it. The early research has shown success with a number of aggressive cancers -- breast, prostate, and brain.
The compound has already been used with other, non-cancerous diseases; it relieves nausea and anxiety, for example. And all indications are that it is non-toxic, so side effects should be minimal.
The researchers are hoping to start clinical trials very soon. That means it could be some time before anything comes of this, but it certainly appears promising.
It's easy to joke about this ("Researching for 20 years? Wonder why that marijuana research went soooooo slooooowly?") But it really does seem promising. There's actually a pretty long line of research into marijuana as a direct treatment for cancer, rather than just a way to manage symptoms (the Daily Beast offers a quick review as they describe this current research). It's controversial, naturally, and there are plenty of people who would rather not encourage marijuana use for any reason.
But I say, explore away. Anything that might help fight cancer is fine with me.
(You were probably expecting another marijuana joke, huh?)
Two researchers at California Pacific Medical Center, after 20 years of research, found that the compound called Cannabidiol affects a gene called ID-1, present in certain aggressive cancers. The Cannabidiol stops cancer cells from growing, and stops the tumor from creating new blood vessels to feed it. The early research has shown success with a number of aggressive cancers -- breast, prostate, and brain.
The compound has already been used with other, non-cancerous diseases; it relieves nausea and anxiety, for example. And all indications are that it is non-toxic, so side effects should be minimal.
The researchers are hoping to start clinical trials very soon. That means it could be some time before anything comes of this, but it certainly appears promising.
It's easy to joke about this ("Researching for 20 years? Wonder why that marijuana research went soooooo slooooowly?") But it really does seem promising. There's actually a pretty long line of research into marijuana as a direct treatment for cancer, rather than just a way to manage symptoms (the Daily Beast offers a quick review as they describe this current research). It's controversial, naturally, and there are plenty of people who would rather not encourage marijuana use for any reason.
But I say, explore away. Anything that might help fight cancer is fine with me.
(You were probably expecting another marijuana joke, huh?)
Saturday, September 22, 2012
Anthems
This morning, I was sitting on the couch, avoiding work, when I heard the faint notes of a saxophone -- my son, in his room, rehearsing some pieces for an audition next month. He was playing "Is You Is or Is You Ain't," which might be part of the audition. Or it could just be a piece that he was messing around with from a book of jazz standards he likes to mess around from. He was probably avoiding work, like I was doing.
I'm sitting here now thinking about the strange history I have with "Is You Is." I first heard it when I was a kid, when Tom Cat sang it to woo someone in a Tom and Jerry cartoon. Then I heard it again, a few years later, when I was in Italy, when a friend made a mix tape with dedications to a bunch of us. I don't even remember what song she dedicated to me, but the song I kept playing on the tape was Joe Jackson's version of "Is You Is," dedicated instead to my friend John, The Guy Who Always Wore Motorcycle Boots and a Mechanic's Shirt with Someone Else's Name Stitched On It. And then, after Isabel and I were married, another friend sent us a Louis Jordan tape -- with "Nobody Here But Us Chickens," "Five Guys Named Moe," and "Is You Is," among others.
I love that there's a song that keeps coming back to me, from so many different parts of my life. There are others, of course. But this one is nice because it's kind of random; it's not like I was a big Louis Jordan fan when I was a kid or anything.
Moments like this remind me that Isabel and I always said we wanted a house full of music. When the kids were small and the weather got colder, we used to play music for them after dinner. Their introduction to the Beatles, Bob Marley, James Taylor, Buckwheat Zydeco, some occasional Bruce Cockburn or Smiths.
I think a lot about the role music has played in my life; it's hard not to do when you have kids that are musicians. And ironic, since I'm such a crappy musician myself. But I love to listen, and I've been known to belt one out on occasion. Thinking about all this made me think about a column from Mary Elizabeth Williams from a few weeks ago. It didn't take too long for me to find it. She writes about something similar -- how music has been an influence in her own life, especially after she was diagnosed with cancer, and how the experience changed the meanings of the songs she has loved.
Williams says, "We apply our most magical thinking to our favorite songs, playing them in endless loops and singing along as if in prayer." I agree wholeheartedly. (She's such a good writer....) I've mentioned before that music has been almost a part of my emotional therapy through all of this. I can latch on to a song and play it over and over again, part of that magical thinking, almost a prayer. Sometimes, it's to find some message, to make sense of what's going on with me. I wrote on my 4 year cancerversary about how some songs helped me sort through some of my mental struggles, trying to answer the question, If cancer changes me, who am I supposed to be? I'm not sure I've ever answered that question fully, but the music certainly made the process more pleasant.
Williams says we all need an anthem -- an inspirational song, maybe a whole list of them, to help us through struggles. I've had plenty of those, too, and I've worn out my iPod listening to them. Dropkick Murphys, "Shipping Up to Boston." The Hours, "Ali in the Jungle." Jack's Mannequin, "Swim." All good running songs, too.
My anthems help me visualize bad things turning into good things. The story that I tell myself changes occasionally, but in the end, I always feel better. Bad into good.
"Is You Is or Is You Ain't" doesn't really fit this "anthem" category, though in some ways it's the perfect anthem for the watching-and-waiting, cancer-that-can't-decide-what-it's-doing, always-kind-of-in-the-middle Follicular Lymphoma patient.
It's quiet upstairs now. He's stopped playing sax, and already been on Facebook to complain about his geometry homework, and I've listened to my cancer anthems, since I had to find the links to their videos. We went apple picking earlier on this beautiful fall New England day. It's a good day. A happy day. Not just because there's music, and Macoun apples, and fall in the air and a dog at my feet. There's relatively good health, too.
And there's a daughter asking what's for dinner, and begging to watch the movie version of the play that the kids will be putting on at school this spring.
The movie? The Sound of Music.
(As my friend Sarah says: Truth.)
I'm sitting here now thinking about the strange history I have with "Is You Is." I first heard it when I was a kid, when Tom Cat sang it to woo someone in a Tom and Jerry cartoon. Then I heard it again, a few years later, when I was in Italy, when a friend made a mix tape with dedications to a bunch of us. I don't even remember what song she dedicated to me, but the song I kept playing on the tape was Joe Jackson's version of "Is You Is," dedicated instead to my friend John, The Guy Who Always Wore Motorcycle Boots and a Mechanic's Shirt with Someone Else's Name Stitched On It. And then, after Isabel and I were married, another friend sent us a Louis Jordan tape -- with "Nobody Here But Us Chickens," "Five Guys Named Moe," and "Is You Is," among others.
I love that there's a song that keeps coming back to me, from so many different parts of my life. There are others, of course. But this one is nice because it's kind of random; it's not like I was a big Louis Jordan fan when I was a kid or anything.
Moments like this remind me that Isabel and I always said we wanted a house full of music. When the kids were small and the weather got colder, we used to play music for them after dinner. Their introduction to the Beatles, Bob Marley, James Taylor, Buckwheat Zydeco, some occasional Bruce Cockburn or Smiths.
I think a lot about the role music has played in my life; it's hard not to do when you have kids that are musicians. And ironic, since I'm such a crappy musician myself. But I love to listen, and I've been known to belt one out on occasion. Thinking about all this made me think about a column from Mary Elizabeth Williams from a few weeks ago. It didn't take too long for me to find it. She writes about something similar -- how music has been an influence in her own life, especially after she was diagnosed with cancer, and how the experience changed the meanings of the songs she has loved.
Williams says, "We apply our most magical thinking to our favorite songs, playing them in endless loops and singing along as if in prayer." I agree wholeheartedly. (She's such a good writer....) I've mentioned before that music has been almost a part of my emotional therapy through all of this. I can latch on to a song and play it over and over again, part of that magical thinking, almost a prayer. Sometimes, it's to find some message, to make sense of what's going on with me. I wrote on my 4 year cancerversary about how some songs helped me sort through some of my mental struggles, trying to answer the question, If cancer changes me, who am I supposed to be? I'm not sure I've ever answered that question fully, but the music certainly made the process more pleasant.
Williams says we all need an anthem -- an inspirational song, maybe a whole list of them, to help us through struggles. I've had plenty of those, too, and I've worn out my iPod listening to them. Dropkick Murphys, "Shipping Up to Boston." The Hours, "Ali in the Jungle." Jack's Mannequin, "Swim." All good running songs, too.
My anthems help me visualize bad things turning into good things. The story that I tell myself changes occasionally, but in the end, I always feel better. Bad into good.
"Is You Is or Is You Ain't" doesn't really fit this "anthem" category, though in some ways it's the perfect anthem for the watching-and-waiting, cancer-that-can't-decide-what-it's-doing, always-kind-of-in-the-middle Follicular Lymphoma patient.
It's quiet upstairs now. He's stopped playing sax, and already been on Facebook to complain about his geometry homework, and I've listened to my cancer anthems, since I had to find the links to their videos. We went apple picking earlier on this beautiful fall New England day. It's a good day. A happy day. Not just because there's music, and Macoun apples, and fall in the air and a dog at my feet. There's relatively good health, too.
And there's a daughter asking what's for dinner, and begging to watch the movie version of the play that the kids will be putting on at school this spring.
The movie? The Sound of Music.
(As my friend Sarah says: Truth.)
Thursday, September 20, 2012
Lymphoma Survey
The Lymphoma Coalition, an umbrella organization for a whole bunch of lymphoma research, support. and awareness organizations from around the world, just published the results of their 2012 survey of lymphoma patients.
The survey was taken by 1606 people from 51 countries, and the LC found three broad themes:
1) There is a general lack of understanding and awareness of the signs and symptoms of lymphoma. It's complex, and easily confused with other benign things, so both patients and doctors can misdiagnose, leading to a late diagnosis, and the complications that come with it.
2) There is a lot of misunderstanding about clinical trials -- how they work, who should be interested in them, how they benefit all patients, and why they should be considered an effective option.
3) Quality of life for lymphoma patients isn't nearly as good as it could be.
Interestingly, when the LC did their last survey in 2010, #1 and #2 were also on their list of trends. It's a shame that not much has changed in 2 years.
The full results of their survey are available at the link, with breakdown by country also available. The United States results are 192 pages long, but don't let that intimidate you. There's lots of interesting information about the topics above, and other topics. If you didn't take the survey (I didn't), it's interesting to see how your own responses compare with others in the U.S. and around the world.
Awareness is key. The LC keeps telling us that....
The survey was taken by 1606 people from 51 countries, and the LC found three broad themes:
1) There is a general lack of understanding and awareness of the signs and symptoms of lymphoma. It's complex, and easily confused with other benign things, so both patients and doctors can misdiagnose, leading to a late diagnosis, and the complications that come with it.
2) There is a lot of misunderstanding about clinical trials -- how they work, who should be interested in them, how they benefit all patients, and why they should be considered an effective option.
3) Quality of life for lymphoma patients isn't nearly as good as it could be.
Interestingly, when the LC did their last survey in 2010, #1 and #2 were also on their list of trends. It's a shame that not much has changed in 2 years.
The full results of their survey are available at the link, with breakdown by country also available. The United States results are 192 pages long, but don't let that intimidate you. There's lots of interesting information about the topics above, and other topics. If you didn't take the survey (I didn't), it's interesting to see how your own responses compare with others in the U.S. and around the world.
Awareness is key. The LC keeps telling us that....
Tuesday, September 18, 2012
Lester and Andruzzi
It's still Lymphoma/Blood Cancer Awareness Month, and there's still lots going on to celebrate.
Two Boston sports heroes -- both Lymphoma Survivors, both Nodes of Gold honorees -- are using their fame to help cancer patients.
Jon Lester, Red Sox pitcher, is hosting a fundraiser for his NRVQT (Never Quit) Foundation. The money raised will benefit the Pediatric Cancer Research Foundation.
Joe Andruzzi, former Patriots lineman and Burkett's Lymphoma survivor, is raising money for cancer research through his (Up)Beat Cancer Foundation. Andruzzi believes strongly in positive attitudes and laughter in beating cancer. The statement of beliefs on the (Up)Beat website is kind of cool:
I like it. Upbeat isn't always possible (we're allowed a bad day every now and then), but as an overall approach to facing cancer, I'm all for it.
(And goodness knows Sox and Pats fans could use a little upbeat laughter these days....)
Two Boston sports heroes -- both Lymphoma Survivors, both Nodes of Gold honorees -- are using their fame to help cancer patients.
Jon Lester, Red Sox pitcher, is hosting a fundraiser for his NRVQT (Never Quit) Foundation. The money raised will benefit the Pediatric Cancer Research Foundation.
Joe Andruzzi, former Patriots lineman and Burkett's Lymphoma survivor, is raising money for cancer research through his (Up)Beat Cancer Foundation. Andruzzi believes strongly in positive attitudes and laughter in beating cancer. The statement of beliefs on the (Up)Beat website is kind of cool:
We believe in electric guitar, not sad piano.
We believe in silly snapshots, not moody black and whites.
We believe in deep laughs, not long faces.
We believe in exciting futures, not uncertain presents.
We believe in carefree jokes, not heavy hearts.
We believe in cutting loose, not reining in.
We believe in what can be, not what can’t.
I like it. Upbeat isn't always possible (we're allowed a bad day every now and then), but as an overall approach to facing cancer, I'm all for it.
(And goodness knows Sox and Pats fans could use a little upbeat laughter these days....)
Friday, September 14, 2012
Dr. R Visit
Saw Dr. R today. Everything continues to look good.
As always, Dr. R relied on three things in evaluating me: a blood test, a physical exam, and my own report of my health.
Blood test was "fine." The physical exam showed "some fullness" in some nodes, but he didn't think they were an issue. In fact, I pointed them out to him beforehand -- part of my "report of my own health." I know what "dangerously" swollen nodes feel like, and these don't feel that way at all. My health is otherwise pretty good -- just some normal 45-year-old man complaints. (At least I assume they're normal.)
We also discussed my status as an Award Winning Gardener. Sure, he accused me of painting my tomatoes the perfect red. But by the end of the visit, he came around -- they all come around -- and he was asking my opinion on using coffee grounds as a soil amendment.
(By the way, coffee grounds are fine as a soil amendment, but they'll make the soil more acidic over time, so use them on acid-loving plants like hydrangeas -- or potatoes, if you're a vegetable gardener. Or amend the soil with mineral lime to balance the pH. Get your soil tested at your Cooperative Extension Office first to find out how much to add. That's some free advice from an Award Winning Gardener. You're welcome.)
So, the upshot: 2 years and 9 months after Rituxan, I'm still doing OK. Next appointment in January.
As always, Dr. R relied on three things in evaluating me: a blood test, a physical exam, and my own report of my health.
Blood test was "fine." The physical exam showed "some fullness" in some nodes, but he didn't think they were an issue. In fact, I pointed them out to him beforehand -- part of my "report of my own health." I know what "dangerously" swollen nodes feel like, and these don't feel that way at all. My health is otherwise pretty good -- just some normal 45-year-old man complaints. (At least I assume they're normal.)
We also discussed my status as an Award Winning Gardener. Sure, he accused me of painting my tomatoes the perfect red. But by the end of the visit, he came around -- they all come around -- and he was asking my opinion on using coffee grounds as a soil amendment.
(By the way, coffee grounds are fine as a soil amendment, but they'll make the soil more acidic over time, so use them on acid-loving plants like hydrangeas -- or potatoes, if you're a vegetable gardener. Or amend the soil with mineral lime to balance the pH. Get your soil tested at your Cooperative Extension Office first to find out how much to add. That's some free advice from an Award Winning Gardener. You're welcome.)
So, the upshot: 2 years and 9 months after Rituxan, I'm still doing OK. Next appointment in January.
Thursday, September 13, 2012
Telemarketers
Bloomberg ran a really disturbing piece yesterday about telemarketers hired by charities (including some cancer charities) to raise funds for them. According to the article, the telemarketers (particularly a firm called InfoCision) took up to 80% of the funds raised for themselves, while telling donors that the opposite was true -- that the charity received 80%.
It's probably not a shock that a telemarketer was deceiving people to take their money -- they aren't generally thought of very highly -- but what was disturbing was that they did it all with the permission of the charities.
As the article explains, the telemarketer typically asked people to use their own money to send letters of solicitation to neighbors. These letters, because they came from a trustworthy neighbor, often result in donations, and with the donations, names on a list of potential future donors. The charities pay the telemarketer to run this program, knowing that the amount that comes in will usually be less than the amount that they pay to the telemarketer. This is what is called a "loss leader." But it's worth it to the charity because it increases the number of donors they have for the future.
The problem comes from what the telemarketers say to the donors who answer the phone. They sometimes refer to themselves as "volunteers," when they are in fact paid employees of the telemarketing firm. When asked, the solicitor sometimes says that the charity will get 80% of the money, when the opposite is true. They play it cute, and say "The overall percentage of donations is 80%," which is true: of ALL of the donations the charity receives, 80% goes to research, helping patients, or whatever the mission is. But that's not always the question being asked; people want to know how much of their actual, individual donation is going to the mission.
And the charities do know about this; the article shows documents with the charities' leaders signing off on the scripts that are read by the telemarketers over the phone.
Among the charities named in this investigation are the American Cancer Society and the American Institute for Cancer Research.
It bothers me. It's not necessarily illegal -- all of the necessary paperwork was been filed. But it bothers me.
At some point, it seems like a charity loses sight of the big picture, and cares more about something else than about its mission. I think this is what happened to Komen; now it's not enough to keep raising money, it's about raising more. And I've already written enough about the American Cancer Society, which is caught up in a whole bunch of controversies about the way it spends money.
I don't know -- it's dis-heartening in some ways.
And I was going to be all happy this week, too...
**********************************
I see Dr. R tomorrow for a 4 month check-up. I'm not expecting anything dramatic. Look for results of the visit in the afternoon.
It's probably not a shock that a telemarketer was deceiving people to take their money -- they aren't generally thought of very highly -- but what was disturbing was that they did it all with the permission of the charities.
As the article explains, the telemarketer typically asked people to use their own money to send letters of solicitation to neighbors. These letters, because they came from a trustworthy neighbor, often result in donations, and with the donations, names on a list of potential future donors. The charities pay the telemarketer to run this program, knowing that the amount that comes in will usually be less than the amount that they pay to the telemarketer. This is what is called a "loss leader." But it's worth it to the charity because it increases the number of donors they have for the future.
The problem comes from what the telemarketers say to the donors who answer the phone. They sometimes refer to themselves as "volunteers," when they are in fact paid employees of the telemarketing firm. When asked, the solicitor sometimes says that the charity will get 80% of the money, when the opposite is true. They play it cute, and say "The overall percentage of donations is 80%," which is true: of ALL of the donations the charity receives, 80% goes to research, helping patients, or whatever the mission is. But that's not always the question being asked; people want to know how much of their actual, individual donation is going to the mission.
And the charities do know about this; the article shows documents with the charities' leaders signing off on the scripts that are read by the telemarketers over the phone.
Among the charities named in this investigation are the American Cancer Society and the American Institute for Cancer Research.
It bothers me. It's not necessarily illegal -- all of the necessary paperwork was been filed. But it bothers me.
At some point, it seems like a charity loses sight of the big picture, and cares more about something else than about its mission. I think this is what happened to Komen; now it's not enough to keep raising money, it's about raising more. And I've already written enough about the American Cancer Society, which is caught up in a whole bunch of controversies about the way it spends money.
I don't know -- it's dis-heartening in some ways.
And I was going to be all happy this week, too...
**********************************
I see Dr. R tomorrow for a 4 month check-up. I'm not expecting anything dramatic. Look for results of the visit in the afternoon.
Wednesday, September 12, 2012
New Treatment?
I didn't post anything yesterday, because anything I started writing just didn't seem right. I started to write about 9/11, not related to cancer in any way, but then cancer came into it, with the announcement on Monday that Responders would be covered for cancer caused by the aftermath of 9/11 attacks. Apparently, there hadn't been enough evidence that all of the toxic stuff in the air could cause cancer, but now the scientific community agrees that the evidence exists. NHL is particularly high in Responders, eleven years later.
So I started to write about that yesterday, and it made be both bitter (because it took so damn long for anyone to help these people) and sad (because the stories about Responders hit me hard; my boys were so young in 2001, and so enamored with firefighters, and the firefighters were so good to us when we stopped by the firehouse every couple of weeks to see the hoses and axes and Halligan bars and try on the helmets...). It just wasn't a very good entry. I didn't want to write something crappy.
So I skipped it and moved on to today. On a happier note....
Cell Therapeutics announced that they have received conditional approval in Europe for a treatment called Pixuvri, which has shown to be effective in Diffuse Large B Cell Lymphoma patients who seem to have no other options. Lymphoma Rock Star Jamie Reno has a nice write up on the significance of the decision.
Pixuvri is also known as Pixantrone. It was developed to be as effective as the anthracycline portion of the chemo cocktail CHOP, Adriamycin. Adriamycin is the "H" in CHOP, because it's also known as Hydroxydaunomycin. Take that away, and you have the chemo cocktail CVP, not COP, because the O is for Onovin, the trade name for Vincristine. But that's not important now. What is important is that Pixantrone replaces Adriamycin, which needs to replaced because, like all anthracyclines, it can cause heart damage.
Got all that? In summary: CPOP (almost CHOP, but with Pixuvri/Pixantrone) seems to be as effective as CHOP, but with less damage to the heart. That's an excellent thing.
Cell Therapeutics' conditional approval means that they have enough evidence that the treatment may do some good for people who would otherwise be out of options, but they still need to do more trials before they can get full approval in Europe.
There are Pixatrone trials going on in the U.S., too. Here's hoping they turn out well, and we have another option -- a safer option -- for people with DLBCL, and perhaps for people with more advanced, more aggressive indolent lymphomas, too.
(Overall, that was a much happier blog entry, I would say.)
So I started to write about that yesterday, and it made be both bitter (because it took so damn long for anyone to help these people) and sad (because the stories about Responders hit me hard; my boys were so young in 2001, and so enamored with firefighters, and the firefighters were so good to us when we stopped by the firehouse every couple of weeks to see the hoses and axes and Halligan bars and try on the helmets...). It just wasn't a very good entry. I didn't want to write something crappy.
So I skipped it and moved on to today. On a happier note....
Cell Therapeutics announced that they have received conditional approval in Europe for a treatment called Pixuvri, which has shown to be effective in Diffuse Large B Cell Lymphoma patients who seem to have no other options. Lymphoma Rock Star Jamie Reno has a nice write up on the significance of the decision.
Pixuvri is also known as Pixantrone. It was developed to be as effective as the anthracycline portion of the chemo cocktail CHOP, Adriamycin. Adriamycin is the "H" in CHOP, because it's also known as Hydroxydaunomycin. Take that away, and you have the chemo cocktail CVP, not COP, because the O is for Onovin, the trade name for Vincristine. But that's not important now. What is important is that Pixantrone replaces Adriamycin, which needs to replaced because, like all anthracyclines, it can cause heart damage.
Got all that? In summary: CPOP (almost CHOP, but with Pixuvri/Pixantrone) seems to be as effective as CHOP, but with less damage to the heart. That's an excellent thing.
Cell Therapeutics' conditional approval means that they have enough evidence that the treatment may do some good for people who would otherwise be out of options, but they still need to do more trials before they can get full approval in Europe.
There are Pixatrone trials going on in the U.S., too. Here's hoping they turn out well, and we have another option -- a safer option -- for people with DLBCL, and perhaps for people with more advanced, more aggressive indolent lymphomas, too.
(Overall, that was a much happier blog entry, I would say.)
Sunday, September 9, 2012
Fair-ness
I'm not a "Bucket List" guy.
I know lots of cancer patients -- and plenty of non-cancer patients -- who keep a Bucket List of things they want to do before they die. (The term comes from the phrase "Kick the Bucket.") Maybe my distaste comes from the fact that the movie Bucket List was playing in theaters when I was diagnosed. Whatever the case, I'm just not a Bucket List guy. At least not the way it's often defined, as a list of Big Moments -- skydiving, seeing the Eiffel Tower, going to a World Series game. Stuff like that.
I think I don't like the idea of having pressure put on me that way, like my life wasn't complete because I didn't dance the tango in Argentina. I'm too busy to worry about those things. So instead of having the Big Moments Bucket List, I look for opportunities as they present themselves. Nothing earth-shattering, necessarily. But there are experiences that come along that make you think, "Wouldn't it be cool if--?" Those are the experiences I'd rather collect.
And this week, I had such a small, cool experience.
I'll save you the suspense and skip the build-up: My plum tomatoes won a first prize blue ribbon at a country fair. And my Big Boy tomatoes won second prize in the "green tomatoes" category. Here are the pictures:
Gorgeous, aren't they?
I'd thought about doing something like this for years, since we went to a different country fair and I saw the vegetable exhibits, and thought, "My stuff is as good as that. Wouldn't it be cool if I won a ribbon for something I grew?"
And now, years later, I've done it. I saw an ad for the fair about two months ago, and looked at their premium book, and saw all of the cool categories -- veggies and fruits, canned produce and pickles, pies and cakes. At that point, my garden was just starting to burst out, and by mid-August, when it was time to enter, I figured my plum tomatoes, cucumbers, and eggplant would be at their peak come fair time, so I entered them. And I figured I'd have some green tomatoes somewhere in the garden, so I entered them, too. Unfortunately, when I went to pick things earlier in the week, my cukes were about spent, and the best eggplant I could find was a small, anemic, pale purple one. Three weeks earlier and I'd have swept my categories. I'm sure of it.
But I'm happy with my tomatoes. And now, with my blue ribbon, I can say that I am an Award-Winning Gardener. On the drive home from the fair, I formulated great plans to start a new blog, write books, maybe host a radio show, all highlighted with the phrase "Award-Winning Gardener." I can hear it now: "Next up on NPR,Lympho Tomato Bob. This week, Bob talks about how to make green tomato relish with those last few tomatoes lingering on the vine."
So I can cross something off my non-Bucket List. Another experience that made me think "Wouldn't it be cool if--?"
*******************************
Because winning those ribbons was pretty cool. And, trust me, I'll be bragging about it for years.
But, as my wife reminded me the other night, the cool experience, the thing to cross off, wasn't my winning. It was my daughter's.
When I got the premium book weeks ago, I looked through all those cool categories. But then I got to the Junior section, for kids under 16. The same baking and gardening categories, but also sections for arts and crafts and hobbies. I showed it to my 11 year old daughter, who got very excited.
And a little nervous.
She's our artist -- sculpting her own American Girl Doll accessories, drawing and sketching whenever she finds a blank piece of paper. She'd love to be an art teacher some day.
So while the idea of entering an art contest was exciting, it was also a little nerve-inducing. What 11 year old girl wants to be judged? But she bucked up and decided to enter three categories: sketching, clay sculpture, and cupcake decorating.
She was nervous on Tuesday when we dropped off her art projects -- a pencil sketch of SpongeBob SquarePants and a clay sculpture of Fred Flintstone watching TV (both of which she created from memory, not from models of any kind that she had in front of her, like pictures of the subjects). She was a little less nervous on Wednesday when she turned in her cupcakes: rubber ducks in candy-pearl bubbles (with a Pez candy as a bar of soap).
And she did great: second prize ribbons for both her sketch and her sculpture, and a third prize for her cupcakes:
(The third place for the cupcakes is a travesty. Her creativity blew everyone else out of the water, so to speak. Everything was edible, including the candy clay ducks. She deserved a higher prize....but I'm biased.....)
But, really, the important part of this whole experience was that she had the courage to do it. She'll be judged for the rest of her life, by lots of people, for lots of things. And this time she had the courage to face that head on.
As much as I wanted a ribbon of my own, I really wanted my daughter to get one -- or three. As she and I waited in line Tuesday night to turn in her art projects, I looked at the clouds about to break, tried to shut out the people in front of me talking about some nonsense, I texted to my wife, "Long line. Ugh." She texted back, "You're a good dad." I kissed my daughter on the head and tried to think more about why all of this might be important to her.
For 20 years, my wife has been the one who has kept me grounded, reminded me of what matters, and kept my priorities straight.
Of all the things on any list of experiences that I might come across, that make me think, "Wouldn't it be cool if--?", it's the ones that make my kids into better people that are probably most important.
I know lots of cancer patients -- and plenty of non-cancer patients -- who keep a Bucket List of things they want to do before they die. (The term comes from the phrase "Kick the Bucket.") Maybe my distaste comes from the fact that the movie Bucket List was playing in theaters when I was diagnosed. Whatever the case, I'm just not a Bucket List guy. At least not the way it's often defined, as a list of Big Moments -- skydiving, seeing the Eiffel Tower, going to a World Series game. Stuff like that.
I think I don't like the idea of having pressure put on me that way, like my life wasn't complete because I didn't dance the tango in Argentina. I'm too busy to worry about those things. So instead of having the Big Moments Bucket List, I look for opportunities as they present themselves. Nothing earth-shattering, necessarily. But there are experiences that come along that make you think, "Wouldn't it be cool if--?" Those are the experiences I'd rather collect.
And this week, I had such a small, cool experience.
I'll save you the suspense and skip the build-up: My plum tomatoes won a first prize blue ribbon at a country fair. And my Big Boy tomatoes won second prize in the "green tomatoes" category. Here are the pictures:
Gorgeous, aren't they?
I'd thought about doing something like this for years, since we went to a different country fair and I saw the vegetable exhibits, and thought, "My stuff is as good as that. Wouldn't it be cool if I won a ribbon for something I grew?"
And now, years later, I've done it. I saw an ad for the fair about two months ago, and looked at their premium book, and saw all of the cool categories -- veggies and fruits, canned produce and pickles, pies and cakes. At that point, my garden was just starting to burst out, and by mid-August, when it was time to enter, I figured my plum tomatoes, cucumbers, and eggplant would be at their peak come fair time, so I entered them. And I figured I'd have some green tomatoes somewhere in the garden, so I entered them, too. Unfortunately, when I went to pick things earlier in the week, my cukes were about spent, and the best eggplant I could find was a small, anemic, pale purple one. Three weeks earlier and I'd have swept my categories. I'm sure of it.
But I'm happy with my tomatoes. And now, with my blue ribbon, I can say that I am an Award-Winning Gardener. On the drive home from the fair, I formulated great plans to start a new blog, write books, maybe host a radio show, all highlighted with the phrase "Award-Winning Gardener." I can hear it now: "Next up on NPR,
So I can cross something off my non-Bucket List. Another experience that made me think "Wouldn't it be cool if--?"
*******************************
Because winning those ribbons was pretty cool. And, trust me, I'll be bragging about it for years.
But, as my wife reminded me the other night, the cool experience, the thing to cross off, wasn't my winning. It was my daughter's.
When I got the premium book weeks ago, I looked through all those cool categories. But then I got to the Junior section, for kids under 16. The same baking and gardening categories, but also sections for arts and crafts and hobbies. I showed it to my 11 year old daughter, who got very excited.
And a little nervous.
She's our artist -- sculpting her own American Girl Doll accessories, drawing and sketching whenever she finds a blank piece of paper. She'd love to be an art teacher some day.
So while the idea of entering an art contest was exciting, it was also a little nerve-inducing. What 11 year old girl wants to be judged? But she bucked up and decided to enter three categories: sketching, clay sculpture, and cupcake decorating.
She was nervous on Tuesday when we dropped off her art projects -- a pencil sketch of SpongeBob SquarePants and a clay sculpture of Fred Flintstone watching TV (both of which she created from memory, not from models of any kind that she had in front of her, like pictures of the subjects). She was a little less nervous on Wednesday when she turned in her cupcakes: rubber ducks in candy-pearl bubbles (with a Pez candy as a bar of soap).
And she did great: second prize ribbons for both her sketch and her sculpture, and a third prize for her cupcakes:
(The third place for the cupcakes is a travesty. Her creativity blew everyone else out of the water, so to speak. Everything was edible, including the candy clay ducks. She deserved a higher prize....but I'm biased.....)
But, really, the important part of this whole experience was that she had the courage to do it. She'll be judged for the rest of her life, by lots of people, for lots of things. And this time she had the courage to face that head on.
As much as I wanted a ribbon of my own, I really wanted my daughter to get one -- or three. As she and I waited in line Tuesday night to turn in her art projects, I looked at the clouds about to break, tried to shut out the people in front of me talking about some nonsense, I texted to my wife, "Long line. Ugh." She texted back, "You're a good dad." I kissed my daughter on the head and tried to think more about why all of this might be important to her.
For 20 years, my wife has been the one who has kept me grounded, reminded me of what matters, and kept my priorities straight.
Of all the things on any list of experiences that I might come across, that make me think, "Wouldn't it be cool if--?", it's the ones that make my kids into better people that are probably most important.
Friday, September 7, 2012
Stand Up
Wow-- I was going to write a reminder about Stand Up 2 Cancer tonight, but there's just a ton of good cancer-related stuff in the news over the last couple of days.
8:00pm, on many, many TV stations. Entertainment includes Coldplay, Alicia Keys, Tim McGraw, Taylor Swift (who will debut a new song), Tom Hanks, Julia Roberts, Samuel L. Jackson (who will probably also tweet about it using his fascinating variant spellings of the F word), and Olympic gold medalists Gabrielle Douglas and Missy Franklin.
Donations go to fund collaborative research on cancer. So instead of having one person who has studied, say, Follicular NHL all her life, the money will fund projects that bring together experts with a variety of backgrounds and perspectives to look at the problem in new ways. (Not that I'm against the single-focus approach, but I also know that sometimes breaking out of a mould yields some interesting new solutions.)
Enjoy the entertainment, and give a little if you can.
- Country singer/former American Idol contestant Kelly Pickler shaved her head this week as a show of support for her best friend, who began chemo for breast cancer. ABC has some video (including some evidence that Mattel is wrong about that whole "Barbie can't be bald and beautiful" thing).
- An 8 year old boy in Illinois won $1000 in a scavenger hunt, and immediately donated it to the family of a two-year old girl who will use the money for her chemo treatments for leukemia. Pretty amazing.
- Tig Notaro, the comedian who came out so honestly about her breast cancer, had surgery this week and is reportedly doing well. No official word about anything, but there's a nice interview available (conducted before the surgery). Tissues recommended.
8:00pm, on many, many TV stations. Entertainment includes Coldplay, Alicia Keys, Tim McGraw, Taylor Swift (who will debut a new song), Tom Hanks, Julia Roberts, Samuel L. Jackson (who will probably also tweet about it using his fascinating variant spellings of the F word), and Olympic gold medalists Gabrielle Douglas and Missy Franklin.
Donations go to fund collaborative research on cancer. So instead of having one person who has studied, say, Follicular NHL all her life, the money will fund projects that bring together experts with a variety of backgrounds and perspectives to look at the problem in new ways. (Not that I'm against the single-focus approach, but I also know that sometimes breaking out of a mould yields some interesting new solutions.)
Enjoy the entertainment, and give a little if you can.
Thursday, September 6, 2012
Peanut
I haven't added anyone to the "Nodes of Gold" roster recently, but I think I just might have a new inductee: an Orangutan named Peanut.
Peanut lives at Jungle Island in Miami, with her fraternal twin sister Pumpkin. (Apparently, Peanut is the energetic, outgoing twin.) The twins gained some fame in the spring when iPads were incorporated into their training, with the hopes that the iPads would help them to better communicate. (The idea was introduced by a man who had used iPads in training dolphins. Who knew?)
In July, Peanut had some surgery to clear an obstruction, and they found that she had Diffuse Large B Cell Lymphoma (DLBCL, an aggressive form on NHL). Peanut is being treated with R-CHOP, which is the standard treatment for humans with DLBCL, too.
By all accounts, Peanut is doing well. The Jungle Island tumblr page has a brief video of her first day outside after treatment. She seems a little sluggish, but that's a nice reminder to all of us cancer patients -- take it easy on yourself, huh? Sit and relax and enjoy the sunshine (or the cool fall breezes that will be coming soon). And stick around for the end of the video for a nice shot of that cute face.
Good luck, Peanut.
Peanut lives at Jungle Island in Miami, with her fraternal twin sister Pumpkin. (Apparently, Peanut is the energetic, outgoing twin.) The twins gained some fame in the spring when iPads were incorporated into their training, with the hopes that the iPads would help them to better communicate. (The idea was introduced by a man who had used iPads in training dolphins. Who knew?)
In July, Peanut had some surgery to clear an obstruction, and they found that she had Diffuse Large B Cell Lymphoma (DLBCL, an aggressive form on NHL). Peanut is being treated with R-CHOP, which is the standard treatment for humans with DLBCL, too.
By all accounts, Peanut is doing well. The Jungle Island tumblr page has a brief video of her first day outside after treatment. She seems a little sluggish, but that's a nice reminder to all of us cancer patients -- take it easy on yourself, huh? Sit and relax and enjoy the sunshine (or the cool fall breezes that will be coming soon). And stick around for the end of the video for a nice shot of that cute face.
Good luck, Peanut.
Tuesday, September 4, 2012
Awareness
Here we arew, four days into September, and I still haven't acknowledged that it's Lymphoma Awareness Month (in fact, it's Blood Cancer Awareness Month, so we're giving some love to the Leukemia and Myeloma folks, too.)
If you're reading this, you're probably more aware of Lymphoma than you'd ever care to be, but it's nice to have some time set aside to make people extra-super-special aware, with, one hopes, some stuff in local newspapers, or online, or on Facebook, or wherever you get your information about the world.
I think the best way to highlight awareness this year is to link to an article by Lymphoma Goddess Betsy de Parry, who frequently contributes to AnnArbor.com with articles about her own experiences as an NHL survivor. She writes, refering to the ribbons that signal awareness of the different blood cancers, "Their colors haven't been slapped on everything from cleats to chicken buckets to pizza boxes, but their contribution to advancing the understanding of cancer and treatment for it has been significant." (And in case you're wondering what those colors are, here's a handy guide from Betsy's article:)
As Betsy points out, research on blood cancers has paved the way for research on other cancers. Early attempts at chemotherapy focused on treating NHL and leukemia. Years later, the first monoclonal antibody treatment to be approved for any cancer was our old pal Rituxan. And research on genetic links to cancer began with CML (chronic myelogenous leukemia).
Aren't we privileged to have such useful cancers?
I actually do remember being told by Dr. R very early on that a lot of research gets done on NHL because it gives us a better understanding of the immune system and what can go wrong with it. Better understanding of the immune system = potentially better understanding of how cancer evades it. So we really do have useful cancers.
So that's all I'll say about Lymphoma Awareness. We're all hyper-aware as it is. But do maybe find a little time to make others aware, anyway. The pink flood will start in a couple of weeks; let's get our message out while we can.
If you're reading this, you're probably more aware of Lymphoma than you'd ever care to be, but it's nice to have some time set aside to make people extra-super-special aware, with, one hopes, some stuff in local newspapers, or online, or on Facebook, or wherever you get your information about the world.
I think the best way to highlight awareness this year is to link to an article by Lymphoma Goddess Betsy de Parry, who frequently contributes to AnnArbor.com with articles about her own experiences as an NHL survivor. She writes, refering to the ribbons that signal awareness of the different blood cancers, "Their colors haven't been slapped on everything from cleats to chicken buckets to pizza boxes, but their contribution to advancing the understanding of cancer and treatment for it has been significant." (And in case you're wondering what those colors are, here's a handy guide from Betsy's article:)
As Betsy points out, research on blood cancers has paved the way for research on other cancers. Early attempts at chemotherapy focused on treating NHL and leukemia. Years later, the first monoclonal antibody treatment to be approved for any cancer was our old pal Rituxan. And research on genetic links to cancer began with CML (chronic myelogenous leukemia).
Aren't we privileged to have such useful cancers?
I actually do remember being told by Dr. R very early on that a lot of research gets done on NHL because it gives us a better understanding of the immune system and what can go wrong with it. Better understanding of the immune system = potentially better understanding of how cancer evades it. So we really do have useful cancers.
So that's all I'll say about Lymphoma Awareness. We're all hyper-aware as it is. But do maybe find a little time to make others aware, anyway. The pink flood will start in a couple of weeks; let's get our message out while we can.
Sunday, September 2, 2012
Vatican-Approved Barbie
I don't know how I could have missed this, but about two weeks ago, an article in the official Vatican newspaper, L'Osservatore Romano, pushed Mattel to start selling a Bald Barbie.
A little background: Late last year, a Facebook page was launched, asking Mattel to create a Beautiful and Bald Barbie for children with hair loss due to chemotherapy and other health problems, or for kids whose moms are having the same problems. The page was only modestly successful, until some news outlets starting reporting on it. And then a blogger from the American Cancer Society criticized the page's creator for trying to blackmail Mattel, and for comparing the rarity of childhood cancer to lightening strikes.*** After that, the page really took off, and they're up to about 156,000 Likes now.
Eventually, Mattel saw the light, and announced that they would be donating a limited number of bald Barbies to children's cancer hospitals. Before they did that, several other doll makers jumped on board and filled the need: American Girl Dolls, Bratz, and Moxie Girls.
And now the Vatican is weighing in on this. Mattel has said, to its credit, that it doesn't want to sell the bald Barbie dolls because it doesn't want to make a profit off of them. Very noble. (Of course, they also own American Girl, and they don 't seem to have a problem profiting off of THOSE bald dolls. But whatever.)
The Vatican paper is somewhat critical of Mattel's use of the doll up to this point, saying Barbie is "stigmatizing" because of the doll's unreal dimensions. And while Barbie has had friends like Becky, who uses a wheelchair, that wheelchair will not fit through Barbie's Dream House door. Plus, Becky's long hair gets caught in the wheels.
The L'Osservatore Romano article urges Mattel to make the dolls more widely available. Making them so limited in availability only adds to the stigma of cancer -- like it's something that needs to be hidden. (How very 1950's....)
I wish I could link to the original Vatican article; I think my rusty Italian could still handle it. Alas, I just can't find it online, and none of the articles I've seen in English have a link to the original Italian.
It's clear to me that Mattel simply does not want to mess with the Barbie brand. It's an image of perfection, and cancer mars perfection. At least that's the message that they are sending. Which is wrong -- both morally wrong, and just plain incorrect.
**************************
[***OK, a little bragging. The ACS's critical blog post, and the ACS's response to people's outrage over the post, were so horrible -- they did everything that an organization absolutely should not do when confronted with a social media scandal -- that I had to use them as an example for an article that I wrote on how not be a social media writer. It will appear in a book on Social Media later this year. Thought I'd slip that in. I'm so much more than just a handsome lymphoma patient....]
A little background: Late last year, a Facebook page was launched, asking Mattel to create a Beautiful and Bald Barbie for children with hair loss due to chemotherapy and other health problems, or for kids whose moms are having the same problems. The page was only modestly successful, until some news outlets starting reporting on it. And then a blogger from the American Cancer Society criticized the page's creator for trying to blackmail Mattel, and for comparing the rarity of childhood cancer to lightening strikes.*** After that, the page really took off, and they're up to about 156,000 Likes now.
Eventually, Mattel saw the light, and announced that they would be donating a limited number of bald Barbies to children's cancer hospitals. Before they did that, several other doll makers jumped on board and filled the need: American Girl Dolls, Bratz, and Moxie Girls.
And now the Vatican is weighing in on this. Mattel has said, to its credit, that it doesn't want to sell the bald Barbie dolls because it doesn't want to make a profit off of them. Very noble. (Of course, they also own American Girl, and they don 't seem to have a problem profiting off of THOSE bald dolls. But whatever.)
The Vatican paper is somewhat critical of Mattel's use of the doll up to this point, saying Barbie is "stigmatizing" because of the doll's unreal dimensions. And while Barbie has had friends like Becky, who uses a wheelchair, that wheelchair will not fit through Barbie's Dream House door. Plus, Becky's long hair gets caught in the wheels.
The L'Osservatore Romano article urges Mattel to make the dolls more widely available. Making them so limited in availability only adds to the stigma of cancer -- like it's something that needs to be hidden. (How very 1950's....)
I wish I could link to the original Vatican article; I think my rusty Italian could still handle it. Alas, I just can't find it online, and none of the articles I've seen in English have a link to the original Italian.
It's clear to me that Mattel simply does not want to mess with the Barbie brand. It's an image of perfection, and cancer mars perfection. At least that's the message that they are sending. Which is wrong -- both morally wrong, and just plain incorrect.
**************************
[***OK, a little bragging. The ACS's critical blog post, and the ACS's response to people's outrage over the post, were so horrible -- they did everything that an organization absolutely should not do when confronted with a social media scandal -- that I had to use them as an example for an article that I wrote on how not be a social media writer. It will appear in a book on Social Media later this year. Thought I'd slip that in. I'm so much more than just a handsome lymphoma patient....]
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