I need to respond to a couple of comments from Tom from the last few weeks. They're both music-related (which is not a huge surprise, knowing Tom).
First, Tom saw the pciture in my last post and requested that I play "Free Bird," Lynyrd Skynyrd's guitar-driven masterpiece. I was actually late for class a few years ago because Free Bird came on the radio as I was pulling into the lot at work, and I felt compelled to listen to the whole 16 minute live version.
After reading Tom's request, I went to a fantastic web site called Chordie, which includes guitar chords for thousands of songs, organized by song title and author. "Free Bird" isn't actually all that tough -- only six chords to learn, as long as you confine yourself to the really easy version. A couple of my chord switches need work (moving to a D from anywhere is hard, and I still slip off my F major), but I sang a passable mini-concert fort Isabel and Strudel, who howled her appreciation.
(Strudel, I mean. Isabel just clapped.)
**************************
Second was Tom's suggestion that I take up some neglected band or artist's cause to get into the Rock and Roll Hall of Fame, now that my guy Jim Rice has been elected to the Baseball Hall. My immediate suggestion was to plug the Moody Blues, mostly because I had heard "Nights in White Satin" (a song as old as I am) a day earlier and it was still in my mind. I made a very quick trip to the Rock Hall site to confirm that they weren't in.
But afterwards, I thought more about which acts haven't made it to the Hall, and there are a ton of deserving candidates. I Googled "Not in the Rock Hall" and came up with a remarkable number of sites dedicated to the topic, mostly from bloggers who needed something to write about (oh, how I pity them!), but also a few sites dedicated to the topic. One in particular stood out.
I can't give you a link, because the banner photo is rude and the langauge is raw (like rock n' roll itself), but you can go look for the site on your own: "The Great Rock and Roll (Hall of Fame) Swindle." Enter at your own risk.
The author has a major beef with the RaRHoF, as many people do. Given the criteria for enshrinement, he thinks some acts are more deserving than those who are already in (he accuses the voters of "overlooking the seminal performers whose efforts changed civilization while praising inconsequential one-hit wonders, doo-wop dinosaurs and happy-face dorks." I lovbe my fellow bloggers).
He raises some excellent points, though: "Criteria include 'the influence and significance of the artist's contributions to the development and perpetuation of rock and roll.' In other words, a majority of the 1,000 'experts' who cast ballots think James Taylor, Bonnie Raitt and the Lovin' Spoonful have had a bigger impact on 'rock' than, say, Alice Cooper, Deep Purple and Kiss?"
Given those criteria, he makes some intriguing recommendations for the Hall:
Cher ("Oh, stop sniveling...where do you think Grace Slick, Chrissie Hynde and Alanis Morrissette got their bang, much less bangs?")
The Monkees ("Like being prefab is a crime? Like Elvis Presley and the Beatles weren't equally nurtured by mastermind Svengalis? Like having someone else write the songs and play the instruments was a problem for anyone on Motown? The Monkees may have been invented for television, but their catalog is as gold-plated as any band from the 1960s, and their influence is staggering in both depth and scope: Michael Nesmith alone was responsible for helping to invent country-rock and MTV; they were the first pop band to use a synthesizer; and Jimi Hendrix made his American debut as their opening act in 1967. See Gorillaz for the most recent misspelled simian homage.")
Alice Cooper ("His over-the-top concerts in the early 1970s brought a theatricality to rock that completely changed the way music is presented onstage. Pretty...incredible list of singles, too, including a bunch of the sensitive pap...so beloved by the Hall of Fame voters. Still cranking out great albums today, and he should sue Marilyn Manson for brand infringement. As Wayne and Garth wailed on their knees, "We're not worthy, we're not worthy!" But he/she sure is.")
KISS ("How much more rock and roll can you get than ye olde Knights in Satan's Service? Here's hoping Gene, Paul, Ace and Peter hurl a nice, vicious hex on the voters' daughters.")
Plus, I spent a total of about 30-35 hours writing that awesome KISS symbol on various desks at St. Mary's and CMHS during my adolescence. -- Lympho Bob
There are more. Though he doesn't mention the Moody Blues at all. I may have to take up the Alice Cooper cause, now that I've been reminded of the Wayne's World "We're not worthy!" scene. How much more of an endorsement can there be than Wayne and Garth's?
It's all very fun to debate, anyway. Feel free to nominate your own Worthies.
*****************************
One last bit of music-related stuff:
Perhaps one of my most enjoyable moments of the last week was seeing Snoop Dogg (who became Official Rapper of the Lympho Bob Blog last May when Peter saw him in a NYC men's room) making mashed potatoes with Marth Stewart.
Two clips: First is the actual process of the two of them making the potatoes, which includes peeling the "sk-izz-in" and then adding a special ingredient. The second clip takes place right before that one, and overlaps it a bit; it involves Snoop giving Martha and her audience a vocabulary lesson.
Classic. I don't really know what this pairing means as far as whose career has fallen farther, Snoop's or Martha's....
Friday, January 30, 2009
Tuesday, January 27, 2009
Running
I ran this morning for the first time in about a month. I seem to be over the bronchitis, and now I'm just dealing with the usual lingering winter stuff. (I usually have something like a cold from about November to March.)
I actually went to see Dr. R on Friday. I was done with a second round of antibiotics earlier in the week, but still wasn't feeling completely better. Rather than see the general practitioner, I called Dr. R. This was for three reasons: first, I missed him (I told him that, and he told me that I say that to him more often than his wife does); second, I wanted to be sure that the congestion-like feeling in my chest wasn't a bunch of nodes popping up; and third, I knew the GP would just give me another round of antibiotics, and and I'm hesitant to just keep popping them, fearing I'll build up a resistance when I might need them later on.
Dr. R is great. He took blood (no problems there) and did a physical exam, asked lots of questions, and told me I didn't seem to have any Lymphoma-related problems. I'm scheduled for a CT scan in about a month, and he said if I wanted to, we could move it up, but he didn't see the need. So we're going to just do the CT when it's scheduled in February. He's very good about asking questions, giving answers, explaining, and calming.
So I ran this morning -- a slow, 20 minute run, but it's something, anyway. Unfortunately, the layoff means I'd be in no shape to run on Sunday, which is too bad, because it means I'll miss another 5k. This one would be special, too -- the Run for Refugees up East Rock, which I did last year just a few weeks after the diagnosis, and which I set my Personal Record for. It would have been nice to run it again. That's three I'd hoped to run that I had to miss since early November. But I'll say again, better that I wanted to and couldn't, than I wasn't able to.
The good news is, I spent all that extra time I had over the last month practicing guitar.
Yes, you're seeing it right -- Lympho Bob is rockin the beard.
Sunday, January 25, 2009
FDA Year in Review (and more)
The Lymphoma Research Foundation has published its FDA Year in Review, in which they discuss the actions taken by the Food and Drug Administration during 2008 that were related to Lymphoma treatments. Much of the relevent stuff has already been discussed here in the blog over the last few months, though it was interesting to see it all in one place. I'd say it was a good year for Lymphoma treatments, with the FDA taking 8 actions. (Consider that figure over 5 or 10 years, and what kinds of options that gives to Lymphoma patients of all types.)
What intrigued me most was the approval of Treanda as a treatment for people who tried Rituxin but didn't get a response, or who had a response that lasted for less than 6 months. I wrote about Treanda recently -- a trial that was reported on at the ASH (American Society of Hematology) conference showed that Treanda (the trade name for Bendamustine) showed about the same response rate as the R-CHOP chemotherapy regiment, but with seemingly much less toxicity. This is, of course, the kind of thing we're looking for (apart from an outright cure) -- treatments that are more effective, but less toxic.
But here's what I find more interesting -- the Yale Med School has been participating in the Treanda trial. Much of the clinical trial work that the researchers at Yale do is in Stem Cell Transplants, but someone there is doing work with Treanda (I'm not sure who's leading the trial). I think Treanda is a really intriguing option, and it's nice to know that there's someone who's only 10 minutes away who has first-hand experience with it. Something to keep in mind.
But here's the really interesting thing, since we're talking about Yale connections: Isabel has been organizing volunteers to help with the school play, and she heard from one parent who's an MD, who said she couldn't help for one particular day, and neither could her husband, because "he's on call that day for the oncology/hematology unit at Yale."
Oncology/Hematology at Yale?
Well, it turns out he's a department chair at Yale Med School, and directs the lab that evaluates biopsies to determine if they have blood cancers. In other words, it's pretty likely he saw my biopsied lymph node a year ago. Husband and wife met when one of her patients had an NHL type that was hard to diagnose, and he diagnosed it.
Isabel told Mrs. Dr. S (as I'll call her) about my NHL, and she wrote back and said we were in excellent hands with Dr. C, the lymphoma specialist I saw at Yale. We saw her after school a few days ago, and she was very encouraging. She told us that Mr. Dr. S recommends a particular NHL specialist at Dana-Farber in Boston, should we ever need or want an opinion outside of the Yale universe. She also reminded us that Follicular NHL is often an extremely long-term thing; Mr. Dr. S has a patient who has had fNHL for 30 years. He comes up from Bermuda once a year for a CT scan and to see a show on Broadway, then flies back home.
It's nice to have these Yale connections, and having Mr. and Mrs. Dr. S as acquantences is pretty cool, especially if they're going to keep giving me (1) names of specialists I can see, and (2) happy stories about 30 year fNHL survivors.
What intrigued me most was the approval of Treanda as a treatment for people who tried Rituxin but didn't get a response, or who had a response that lasted for less than 6 months. I wrote about Treanda recently -- a trial that was reported on at the ASH (American Society of Hematology) conference showed that Treanda (the trade name for Bendamustine) showed about the same response rate as the R-CHOP chemotherapy regiment, but with seemingly much less toxicity. This is, of course, the kind of thing we're looking for (apart from an outright cure) -- treatments that are more effective, but less toxic.
But here's what I find more interesting -- the Yale Med School has been participating in the Treanda trial. Much of the clinical trial work that the researchers at Yale do is in Stem Cell Transplants, but someone there is doing work with Treanda (I'm not sure who's leading the trial). I think Treanda is a really intriguing option, and it's nice to know that there's someone who's only 10 minutes away who has first-hand experience with it. Something to keep in mind.
But here's the really interesting thing, since we're talking about Yale connections: Isabel has been organizing volunteers to help with the school play, and she heard from one parent who's an MD, who said she couldn't help for one particular day, and neither could her husband, because "he's on call that day for the oncology/hematology unit at Yale."
Oncology/Hematology at Yale?
Well, it turns out he's a department chair at Yale Med School, and directs the lab that evaluates biopsies to determine if they have blood cancers. In other words, it's pretty likely he saw my biopsied lymph node a year ago. Husband and wife met when one of her patients had an NHL type that was hard to diagnose, and he diagnosed it.
Isabel told Mrs. Dr. S (as I'll call her) about my NHL, and she wrote back and said we were in excellent hands with Dr. C, the lymphoma specialist I saw at Yale. We saw her after school a few days ago, and she was very encouraging. She told us that Mr. Dr. S recommends a particular NHL specialist at Dana-Farber in Boston, should we ever need or want an opinion outside of the Yale universe. She also reminded us that Follicular NHL is often an extremely long-term thing; Mr. Dr. S has a patient who has had fNHL for 30 years. He comes up from Bermuda once a year for a CT scan and to see a show on Broadway, then flies back home.
It's nice to have these Yale connections, and having Mr. and Mrs. Dr. S as acquantences is pretty cool, especially if they're going to keep giving me (1) names of specialists I can see, and (2) happy stories about 30 year fNHL survivors.
Friday, January 23, 2009
Good (Professional) News
Got some good news yesterday, career-wise: I was awarded a sabbatical for next fall. This means instead of teaching, I'll work on a research project for the semester, with the expectation that I'll publish the results.
Some schools automatically give sabbaticals to chairs as they finish up their terms, but Southern doesn't. It's competitive -- you write a proposal describing your project, and it's reviewed by an elected committee, then by the President, then by the Board of Trustees. There are usually 23 given out each year, with maybe 35-40 applications. I was ranked 14. The president's letter came yesterday, so it's official.
My research specialization involves looking at writing in nonprofit organizations (and the way that writing can be used in the classroom). For my project, I'll look at the ways nonprofits are using writing on the internet in new and creative ways. Should be fun, and it will help my students, since they'll likey encounter (or create) online writing in the workplace some day.
Mostly, though, the sabbatical helps give me a nice a nice long-term perspective on things. I'm back to thinking of myself as a teacher and researcher, not as a department chair -- and those are the things make me happy at work.
Some schools automatically give sabbaticals to chairs as they finish up their terms, but Southern doesn't. It's competitive -- you write a proposal describing your project, and it's reviewed by an elected committee, then by the President, then by the Board of Trustees. There are usually 23 given out each year, with maybe 35-40 applications. I was ranked 14. The president's letter came yesterday, so it's official.
My research specialization involves looking at writing in nonprofit organizations (and the way that writing can be used in the classroom). For my project, I'll look at the ways nonprofits are using writing on the internet in new and creative ways. Should be fun, and it will help my students, since they'll likey encounter (or create) online writing in the workplace some day.
Mostly, though, the sabbatical helps give me a nice a nice long-term perspective on things. I'm back to thinking of myself as a teacher and researcher, not as a department chair -- and those are the things make me happy at work.
Tuesday, January 20, 2009
One Amazing Kid
There's been some discussion in the support group in the last few days about a kid named Pat Pedraja.
Pat has leukemia, and is still going through treatments. He had a friend who died while waiting for a bone marrow/stem cell transplant because they couldn't find a donor match. So Pat (who's 12 years old) came up with the goal of signing up 2007 people for the National Bone Marrow Transplant List during 2007.
So far, he's inspired more than 10,000 people to register. He has a website for his cause, which he calls Driving for Donors. In the last few months, he's been recognized for his work with a CNN Heroes Viewers' Choice Award and a Do Something Award (which got his face on a Dorito's bag -- the Wheaties Box of the 21st century). And maybe most important for those of you of a certain generation, he's been praised by Lauren Conrad of MTV's The Hills for his good work. (Ms. Conrad gave Pat her trophy after shew won a Teen Choice Award.)
Pat first became known for by auctioning off advertising space on his head, which was bald from chemo. A company bid $5100 for bone marrow donation support in an eBay auction for the right to put its web address on his head for a few months.
I don't do politics on the blog, but in light of the new President's speech asking us to not sit around and wait for someone else to make a change, I thought Pat's story was the best thing I could offer today.
One seriously amazing kid.
Pat has leukemia, and is still going through treatments. He had a friend who died while waiting for a bone marrow/stem cell transplant because they couldn't find a donor match. So Pat (who's 12 years old) came up with the goal of signing up 2007 people for the National Bone Marrow Transplant List during 2007.
So far, he's inspired more than 10,000 people to register. He has a website for his cause, which he calls Driving for Donors. In the last few months, he's been recognized for his work with a CNN Heroes Viewers' Choice Award and a Do Something Award (which got his face on a Dorito's bag -- the Wheaties Box of the 21st century). And maybe most important for those of you of a certain generation, he's been praised by Lauren Conrad of MTV's The Hills for his good work. (Ms. Conrad gave Pat her trophy after shew won a Teen Choice Award.)
Pat first became known for by auctioning off advertising space on his head, which was bald from chemo. A company bid $5100 for bone marrow donation support in an eBay auction for the right to put its web address on his head for a few months.
I don't do politics on the blog, but in light of the new President's speech asking us to not sit around and wait for someone else to make a change, I thought Pat's story was the best thing I could offer today.
One seriously amazing kid.
Sunday, January 18, 2009
Things I'm Tired of
1) Head colds and chest colds that linger and alternate with each other for three weeks
2) All this damn snow, and the shoveling that comes with it
3) The word "Ginormous"
4) Those commercials for FreeCreditReport.com
5) Rachel Ray
6) People who say Non-Hodgkin Lymphoma instead of Non-Hodgkin's Lymphoma
7) Non-Hodgkin's Lymphoma
(And now I'm going to take another antibiotic and shovel the driveway.)
2) All this damn snow, and the shoveling that comes with it
3) The word "Ginormous"
4) Those commercials for FreeCreditReport.com
5) Rachel Ray
6) People who say Non-Hodgkin Lymphoma instead of Non-Hodgkin's Lymphoma
7) Non-Hodgkin's Lymphoma
(And now I'm going to take another antibiotic and shovel the driveway.)
Thursday, January 15, 2009
Happy Anniversary to Me
T.S. Eliot starts out his poem The Waste Land this way:
April is the cruellest month, breeding
Lilacs out of the dead land, mixing
Memory and desire, stirring
Dull roots with spring rain.
Winter kept us warm, covering
Earth in forgetful snow, feeding
A little life with dried tubers.
Personally, I like April. That's about when baseball season starts up again. And if you've ever read Dinosaur Bob, you know that baseball makes everything A-Ok.
It's January that I think kind of sucks.
Today is the one-year anniversary of my diagnosis. Like all emotionally complicated anniversaries, it seems like the one year mark is both way too short a time and way too long a time, simultaneously, like I've been living with it forever and like it just happened yesterday.
For a couple of weeks now, I've been trying to sort out how I feel about the day. I'm still not sure.
I'll let you in on a little bit of a confession: when I got the news, I pretty much knew already. Not just because of the clumsy way the doctor handled telling me the news (calling me and asking me to come in and refusing to tell me the news over the phone, then keeping me waiting for a half hour, and then delaying the news for a couple of minutes after she did come to see me, asking me if I was "strssed"). No, it wasn't that.
It was the previous October, when I was feeling the strange feelings in my chest that were eventually diagnosed as acid reflux. I saw a lung specialist then, who ordered a CT scan, which showed a spot on my lung (left over pneumonia from the summer before) and a swollen node in my chest (still cleaning up from the pneumonia), and he said they meant maybe a 5-10% chance of cancer at most. After that, I felt better, but looked up "Swollen Lymph Nodes" on WebMD anyway, and it said swollen nodes could possibly be lymphoma, especially if they appear in more than one part of the body. I kept that in mind, so when the node near my hip bone popped up a month or two later, I suspected the worst.
I kind of did my grieving and "Why Me?-ing" then, before I was even officially diagnosed. I remember actually being in church, probably in November, suspecting the worst, and seeing a very old man walking down the aisle, bent over, and thinking, "Why me? Why not him?" Part of me just knew.
Of course, I'd never actually wish cancer on someone. I was thinking more about why things happen to some people and not to others. It's a question I haven't really spent much time on in the last year, because, really, what's the point? I can get just as philosophical as the next professor, but I'm more about plans than questions. At some point, you stop asking "why" questions and you get down to solving the problem.
Which leads me to this: I can't really say that I've experienced some Big Change as a result of the diagnosis. I don't see the world in a new way. I haven't quit my job to persue some dream, realizing now how short life is and how precious time is. That's just not me. The whole guitar lessons thing might seem like one of those "bucket list" items, but it isn't -- I had planned on taking lessons long ago, and I was just waiting for my term as department chair to be finished, so I had more time to practice. (Sorry if that ruined some inspirational role modeling for you.)
The one small change I can see in myself is much more subtle, and nobody else but me would even notice it: I get less stressed about confronting problems head on.
Now, here I've identified myself as a problem solver, and I'm telling you I used to be stressed about solving problems. I've always been a problem solver, and I've always done well when I've had a little time to mull the options and then come to a solution. But I've always gotten a small jolt of nervousness when I was hit with a problem without warning and needed to come up with a solution immediately. Like being called on unexpectedly by a teacher. Nerves would sometimes take over and I'd fumble around for a response. But not anymore. Smooth as silk, cool as a cuke. It happened to me within the last week -- in a high pressure sitaution, I was asked a question unexpectedly, in front of a bunch of people I didn't know very well. No fumbling. I knew just what to say. Very strange. I'm suddenly unflappable.
I guess I haven't had the Big Change because my life, really, hasn't changed all that much in a year. Obviously, there's the whole cancer thing hanging over my head, and that clouds everything in big and small ways. But mostly small, at least for now. My day-to-day life hasn't really changed all that much.
And I'm very grateful for that. Even if the doctor told me tomorrow that I needed to start treatment, I'd feel pretty damn lucky. I've had a whole year to prepare myself emotionally, to find out everything I could about this disease and my options for treatment, and to gather up my support network. A while ago, in a Nodes of Gold segment, I wrote about Joe Andruzzi, a fomer New England Patriot and Southern Connecticut State grad. He was diagnosed with a very rare, and extremely aggressive form of NHL -- so aggressive that the tumors can double in size in 24 hours. His doctor told him his treatment options, then gave him 4 hours to make a decision about what to do. Four hours. I've had roughly eight thousand, eight hundred and eleven hours. And counting. How can that be anything but lucky? And even better -- if I make the wrong choice, I'll probably still have plenty of time to decide how to fix it.
I guess that's why watching and waiting has worked for me. I'm a watcher. Even my dissertation involved watching -- a sociocognitive, ethnographic study of organizational writing. Watching and waiting comes naturally to me. It would probably drive most people nuts (I know just watching me watching and waiting is driving some of you nuts). But it works for me.
So I guess I haven't changed much. I'm just so much more of what I already was. Which (my Mom says) is a good thing.
I'm open to changing, and I'm sure I will at some point. But I'm feeling happy -- and fortunate -- that I can stay pretty much the same for now.
April is the cruellest month, breeding
Lilacs out of the dead land, mixing
Memory and desire, stirring
Dull roots with spring rain.
Winter kept us warm, covering
Earth in forgetful snow, feeding
A little life with dried tubers.
Personally, I like April. That's about when baseball season starts up again. And if you've ever read Dinosaur Bob, you know that baseball makes everything A-Ok.
It's January that I think kind of sucks.
Today is the one-year anniversary of my diagnosis. Like all emotionally complicated anniversaries, it seems like the one year mark is both way too short a time and way too long a time, simultaneously, like I've been living with it forever and like it just happened yesterday.
For a couple of weeks now, I've been trying to sort out how I feel about the day. I'm still not sure.
I'll let you in on a little bit of a confession: when I got the news, I pretty much knew already. Not just because of the clumsy way the doctor handled telling me the news (calling me and asking me to come in and refusing to tell me the news over the phone, then keeping me waiting for a half hour, and then delaying the news for a couple of minutes after she did come to see me, asking me if I was "strssed"). No, it wasn't that.
It was the previous October, when I was feeling the strange feelings in my chest that were eventually diagnosed as acid reflux. I saw a lung specialist then, who ordered a CT scan, which showed a spot on my lung (left over pneumonia from the summer before) and a swollen node in my chest (still cleaning up from the pneumonia), and he said they meant maybe a 5-10% chance of cancer at most. After that, I felt better, but looked up "Swollen Lymph Nodes" on WebMD anyway, and it said swollen nodes could possibly be lymphoma, especially if they appear in more than one part of the body. I kept that in mind, so when the node near my hip bone popped up a month or two later, I suspected the worst.
I kind of did my grieving and "Why Me?-ing" then, before I was even officially diagnosed. I remember actually being in church, probably in November, suspecting the worst, and seeing a very old man walking down the aisle, bent over, and thinking, "Why me? Why not him?" Part of me just knew.
Of course, I'd never actually wish cancer on someone. I was thinking more about why things happen to some people and not to others. It's a question I haven't really spent much time on in the last year, because, really, what's the point? I can get just as philosophical as the next professor, but I'm more about plans than questions. At some point, you stop asking "why" questions and you get down to solving the problem.
Which leads me to this: I can't really say that I've experienced some Big Change as a result of the diagnosis. I don't see the world in a new way. I haven't quit my job to persue some dream, realizing now how short life is and how precious time is. That's just not me. The whole guitar lessons thing might seem like one of those "bucket list" items, but it isn't -- I had planned on taking lessons long ago, and I was just waiting for my term as department chair to be finished, so I had more time to practice. (Sorry if that ruined some inspirational role modeling for you.)
The one small change I can see in myself is much more subtle, and nobody else but me would even notice it: I get less stressed about confronting problems head on.
Now, here I've identified myself as a problem solver, and I'm telling you I used to be stressed about solving problems. I've always been a problem solver, and I've always done well when I've had a little time to mull the options and then come to a solution. But I've always gotten a small jolt of nervousness when I was hit with a problem without warning and needed to come up with a solution immediately. Like being called on unexpectedly by a teacher. Nerves would sometimes take over and I'd fumble around for a response. But not anymore. Smooth as silk, cool as a cuke. It happened to me within the last week -- in a high pressure sitaution, I was asked a question unexpectedly, in front of a bunch of people I didn't know very well. No fumbling. I knew just what to say. Very strange. I'm suddenly unflappable.
I guess I haven't had the Big Change because my life, really, hasn't changed all that much in a year. Obviously, there's the whole cancer thing hanging over my head, and that clouds everything in big and small ways. But mostly small, at least for now. My day-to-day life hasn't really changed all that much.
And I'm very grateful for that. Even if the doctor told me tomorrow that I needed to start treatment, I'd feel pretty damn lucky. I've had a whole year to prepare myself emotionally, to find out everything I could about this disease and my options for treatment, and to gather up my support network. A while ago, in a Nodes of Gold segment, I wrote about Joe Andruzzi, a fomer New England Patriot and Southern Connecticut State grad. He was diagnosed with a very rare, and extremely aggressive form of NHL -- so aggressive that the tumors can double in size in 24 hours. His doctor told him his treatment options, then gave him 4 hours to make a decision about what to do. Four hours. I've had roughly eight thousand, eight hundred and eleven hours. And counting. How can that be anything but lucky? And even better -- if I make the wrong choice, I'll probably still have plenty of time to decide how to fix it.
I guess that's why watching and waiting has worked for me. I'm a watcher. Even my dissertation involved watching -- a sociocognitive, ethnographic study of organizational writing. Watching and waiting comes naturally to me. It would probably drive most people nuts (I know just watching me watching and waiting is driving some of you nuts). But it works for me.
So I guess I haven't changed much. I'm just so much more of what I already was. Which (my Mom says) is a good thing.
I'm open to changing, and I'm sure I will at some point. But I'm feeling happy -- and fortunate -- that I can stay pretty much the same for now.
So today is a celebration, not of what happened on January 15, 2008, but what has happened in the year since then. I've had a year of normalcy. There were certainly days early on when I doubted that would ever happen.
Thanks for all of your support for the past year. As I said at Thanksgiving, this blog has really helped me a lot. I appreciate your being a part of it all.
Monday, January 12, 2009
Updates/Follow-Ups
Well, as Strudel mentioned last week, I've been fighting a little bronchitis for a few days. I've been kind of prone to it for the last few years, unfortunately. The doctor put me on a 5 day antibiotic, and she said if I wasn't feeling better by today, we'd see what else we could do. I am feeling better -- not completely well, but better. I'm not worried, and you shouldn't be either, if you tend to go that way.
**************
It has finally happened. Jim Rice was elected to the Baseball Hall of Fame today. It was his 15th and final year on the ballot, and he got 76.4% of the vote (he needed 75%).
Jim Rice was my favorite baseball player growing up. I wore his number, 14, on every baseball uniform that I could, in his honor, even when I played softball as an adult.
(That looks way more pathetic than it should when I see it in writing.)
I saw a great program about Fried Foods last night on the Travel Channel. Not that I'd eat Fried Twinkies or Fried Reese's Cups or most of the other stuff they featured. Not too often, anyway. (Plus Natalie the Nutritionist says Fried Twinkies are the worst food ever. Who knew Twinkies contain a meat product?)
But what intrigued me most from the show was the deep fried hamburgers from Dyer's in Memphis. I've written about great burgers before, and this one is as special as those I've written about -- even the one that uses grilled cheese sandwiches as buns. Dyer's deep fries their burgers, but here's the special part -- they've been using the same grease for 90 years. Watch the clip from the show here.
Incidentally, I live just outside of New Haven, which lays claim to being the birthplace of the hamburger (be sure to check out "Louis' Links"). We moved here from Louisville, which claims to be the birthplace of the cheeseburger. How cool is that?
**************
Peter had play try-outs this weekend (the middle school students are putting Wizard of Oz), and he won the part of......
A Flying Monkey!!!
Finally, now that we're almost half-way through with January, I need to remind you all the January is National Blood Donor Month. January is always bad for blood banks -- people are sick, exhausted from the holidays, etc, and there are always shortages. If you're feeling healthy, and you have a free hour or so, please give a pint. The Red Cross web site will help you find your local chapter, and then one of the many blood donation drives that are probably happening within 15 minutes of your house.
As a blood cancer patient, I can't give. I need one of you to do it for me.
Thanks.
**************
It has finally happened. Jim Rice was elected to the Baseball Hall of Fame today. It was his 15th and final year on the ballot, and he got 76.4% of the vote (he needed 75%).
Jim Rice was my favorite baseball player growing up. I wore his number, 14, on every baseball uniform that I could, in his honor, even when I played softball as an adult.
(That looks way more pathetic than it should when I see it in writing.)
But the most important thing about Rice's elction, of course, is that I was right about it and my brother was wrong.
***************
I saw a great program about Fried Foods last night on the Travel Channel. Not that I'd eat Fried Twinkies or Fried Reese's Cups or most of the other stuff they featured. Not too often, anyway. (Plus Natalie the Nutritionist says Fried Twinkies are the worst food ever. Who knew Twinkies contain a meat product?)
But what intrigued me most from the show was the deep fried hamburgers from Dyer's in Memphis. I've written about great burgers before, and this one is as special as those I've written about -- even the one that uses grilled cheese sandwiches as buns. Dyer's deep fries their burgers, but here's the special part -- they've been using the same grease for 90 years. Watch the clip from the show here.
Incidentally, I live just outside of New Haven, which lays claim to being the birthplace of the hamburger (be sure to check out "Louis' Links"). We moved here from Louisville, which claims to be the birthplace of the cheeseburger. How cool is that?
**************
Peter had play try-outs this weekend (the middle school students are putting Wizard of Oz), and he won the part of......
A Flying Monkey!!!
We're so proud. We're going to put an ad in the program congraulating him. My suggestion:
Congratulations to you.
Congratulations to you.
You look like Flying Monkey,
And you smell like one, too.
Love, Mom and Dad.
John and Catherine love the idea. Peter is less enthusiastic.
Finally, now that we're almost half-way through with January, I need to remind you all the January is National Blood Donor Month. January is always bad for blood banks -- people are sick, exhausted from the holidays, etc, and there are always shortages. If you're feeling healthy, and you have a free hour or so, please give a pint. The Red Cross web site will help you find your local chapter, and then one of the many blood donation drives that are probably happening within 15 minutes of your house.
As a blood cancer patient, I can't give. I need one of you to do it for me.
Thanks.
Friday, January 9, 2009
Me, Strudel
So I'm on the couch where I'm not supposed to be, listening to Cancer Boy talking to the Lady who feeds me, and she says, "Hey Cancer Boy, when you going to write a blog?" And he says, "No, I don't feel good." He says he has bronco-something, but he says the doctor is sending over his Aunty Biotiks. I've been waiting at the front door for this Aunty to come, but so far, I haven't seen her. I know. When she comes, I'll bark loud. Maybe hump her leg, too.
So I say to Cancer Boy, "Hey, we switch -- you stay on the couch and I write the blog." But he go, No, you don't write so good. And I say, Look at the blog! I write good! So he say, "OK, you write. But der blog is about cancer. Not about how much better is dogs than people." So I say OK.
I tell you a story about a Schnauzer names George. George was very special -- he knew how to find cancer. He was trained to sniff people and find cancer on their skin. Read about him here. Like the link says, a dog scan is always better than a cat scan, huh?
So George was the original, but now there's more dogs who sniff out cancer. Even some who have been cloned. Watch about them here and here.
So how's that for a cancer blog?
And also about how much better is dogs than people.
So thanks for watching my birthday video. Now you know I'm smarter and cuter than you.
Cancer Boy is growing a beard. He wants to be cute like me. Plus his Aunty Biotiks helps him, and he feels better.
Vielen Danke.
So I say to Cancer Boy, "Hey, we switch -- you stay on the couch and I write the blog." But he go, No, you don't write so good. And I say, Look at the blog! I write good! So he say, "OK, you write. But der blog is about cancer. Not about how much better is dogs than people." So I say OK.
I tell you a story about a Schnauzer names George. George was very special -- he knew how to find cancer. He was trained to sniff people and find cancer on their skin. Read about him here. Like the link says, a dog scan is always better than a cat scan, huh?
So George was the original, but now there's more dogs who sniff out cancer. Even some who have been cloned. Watch about them here and here.
So how's that for a cancer blog?
And also about how much better is dogs than people.
So thanks for watching my birthday video. Now you know I'm smarter and cuter than you.
Cancer Boy is growing a beard. He wants to be cute like me. Plus his Aunty Biotiks helps him, and he feels better.
Vielen Danke.
Tuesday, January 6, 2009
Nice Follicular NHL Video
A very new, state-of-the-field video was just published on MedScape's web site. It's called "Assessing the Standard of Care for Indolent Non-Hodgkin Lymphoma, " and it features three top NHL researchers (James O. Armitage, Bruce D. Cheson, and Owen A. O'Connor) discussing where we are in terms of indolent (less-aggressive lymphomas like Follicular NHL).
(I've actually read stuff by Armitage, and recognize his name. When you have a favorite NHL researcher/author, I guess you know you're a lymphoma research nerd. I may write him a groupy-type e-mail and ask if he'll be my Facebook friend.)
Anyway, the video is about 30 minutes long, and the link for it is here. MedScape may ask you to create a free user name and password. If you have more usernames and passwords out there on the internet than you'd like (and I sure do), then you can type medscape.com/viewarticle/586053 as a Google search term, and Google will give you a direct link to the video without your having to sign in. (Sneaky stuff.)
I'll give you some highlights, in case you want to skip the video, or in case you think a little previewing will help you follow what they're saying.
The first section of the video discusses current diagnosis and treatments for fNHL and SLL/CLL (another indolent lymphoma). No surprises here -- you need a biopsy of a lymph node to really know what you're dealing with. As they bring up, there's still some discussion in the NHL community about the most effective treatment options. I know from my own research that a lot of the problem has come from there being a lack of willingness to be a part of clinical trials, though that's changing. The three researchers discuss Watch and Wait for a fairly significant chunk of time, and all seem to agree that for someone who is asymptomatic with low tumor burden, it's an appropriate strategy, given that things can stay stable for years. Like any treatment option, it can be misused, and some doctors seem to let the watching go on for too long before more active treatment (not a problem for me -- I keep Dr. R on his toes).
After W & W, common treatments are usually straight Rituxin, or Rituxin with some combo chemo, such a R-CVP or R-CHOP, which are nearly the same chemo cocktail but with CHOP having one more drug added to it. (I've discussed this before.) The decision to choose CVP over CHOP has to do with the likelihood of transformation to a more aggressive form of NHL; CHOP is used if the disease becomes more aggressive, or is reserved for later use if the chance for transformation is likely. Other chemos like Fludurabine are mentioned, as are RadioImmunoTherapies like Zevalin.
There's also some discussion on the video about stage 3 fNHL and its implications. Some think all stage 3 fNHL should be treated as an aggressive lymphoma; others divide stage 3 into 3a (less aggressive) and 3b (more aggressive), treating 3a the same as a stage 1 or 2, using strategies like Watch and Wait.
What all of that means for me is that I've been evaluated as stage 3a (with one node area pretty active, and several others (as the lymphoma specialist as Yale said) barely lighting up the screen). The plan that Dr. R and I have in place is very much in line with what the state-of-the-field seems to be saying. Very comforting.
The video then discusses some future treatments. If you've been keeping up with all of the research I've been writing about in the blog (without your eyes glazing over), then the video will give you a nice summary. Much of the new research has been on monoclonal antibodies that will either improve upon or combine with Rituxin. There are several of these antibodies now in development or in various stages of clinical trial. Other research is being done on ImmunoModulatory agents: rather than attacking the tumor cells themselves, they attack their environment and affect how the tumor cells interact with that environment, disrupting the tumor cells' work.
The researchers also discuss what they think treatments will look like 5 years from now. They all agree that research is moving in the direction of "personalizing" teatments. This isn't to say every patient will get a different treatment, but rather they will be able to know enough about how each individual patient's tumor cells and their environments will likely respond to certain antibodies or other treatments. So rather than using an "average effectiveness (more people respond to X than Y, so we'll try X)" standard, or broad-acting chemo, they'll have better reasons for choosing certain treatments over others. The idea is to maximize efficiency and minimize toxicity.
Very interesting stuff, and very hopeful. I quoted someone from the support group once, whose doctor told her "If we can keep a patient alive for 5 years, we can keep him alive for 50." That certainly seems to be the attitude that these researchers are taking. Maybe it won't be 5 years before we know how to effectively personalize treatment -- maybe it will be 10 -- but there are certainly enough options out there to treat people until researchers can figure that out.
Hope you enjoy the video. (Or skip it, since it probably took you a half hour to read my summary anyway.)
(I've actually read stuff by Armitage, and recognize his name. When you have a favorite NHL researcher/author, I guess you know you're a lymphoma research nerd. I may write him a groupy-type e-mail and ask if he'll be my Facebook friend.)
Anyway, the video is about 30 minutes long, and the link for it is here. MedScape may ask you to create a free user name and password. If you have more usernames and passwords out there on the internet than you'd like (and I sure do), then you can type medscape.com/viewarticle/586053 as a Google search term, and Google will give you a direct link to the video without your having to sign in. (Sneaky stuff.)
I'll give you some highlights, in case you want to skip the video, or in case you think a little previewing will help you follow what they're saying.
The first section of the video discusses current diagnosis and treatments for fNHL and SLL/CLL (another indolent lymphoma). No surprises here -- you need a biopsy of a lymph node to really know what you're dealing with. As they bring up, there's still some discussion in the NHL community about the most effective treatment options. I know from my own research that a lot of the problem has come from there being a lack of willingness to be a part of clinical trials, though that's changing. The three researchers discuss Watch and Wait for a fairly significant chunk of time, and all seem to agree that for someone who is asymptomatic with low tumor burden, it's an appropriate strategy, given that things can stay stable for years. Like any treatment option, it can be misused, and some doctors seem to let the watching go on for too long before more active treatment (not a problem for me -- I keep Dr. R on his toes).
After W & W, common treatments are usually straight Rituxin, or Rituxin with some combo chemo, such a R-CVP or R-CHOP, which are nearly the same chemo cocktail but with CHOP having one more drug added to it. (I've discussed this before.) The decision to choose CVP over CHOP has to do with the likelihood of transformation to a more aggressive form of NHL; CHOP is used if the disease becomes more aggressive, or is reserved for later use if the chance for transformation is likely. Other chemos like Fludurabine are mentioned, as are RadioImmunoTherapies like Zevalin.
There's also some discussion on the video about stage 3 fNHL and its implications. Some think all stage 3 fNHL should be treated as an aggressive lymphoma; others divide stage 3 into 3a (less aggressive) and 3b (more aggressive), treating 3a the same as a stage 1 or 2, using strategies like Watch and Wait.
What all of that means for me is that I've been evaluated as stage 3a (with one node area pretty active, and several others (as the lymphoma specialist as Yale said) barely lighting up the screen). The plan that Dr. R and I have in place is very much in line with what the state-of-the-field seems to be saying. Very comforting.
The video then discusses some future treatments. If you've been keeping up with all of the research I've been writing about in the blog (without your eyes glazing over), then the video will give you a nice summary. Much of the new research has been on monoclonal antibodies that will either improve upon or combine with Rituxin. There are several of these antibodies now in development or in various stages of clinical trial. Other research is being done on ImmunoModulatory agents: rather than attacking the tumor cells themselves, they attack their environment and affect how the tumor cells interact with that environment, disrupting the tumor cells' work.
The researchers also discuss what they think treatments will look like 5 years from now. They all agree that research is moving in the direction of "personalizing" teatments. This isn't to say every patient will get a different treatment, but rather they will be able to know enough about how each individual patient's tumor cells and their environments will likely respond to certain antibodies or other treatments. So rather than using an "average effectiveness (more people respond to X than Y, so we'll try X)" standard, or broad-acting chemo, they'll have better reasons for choosing certain treatments over others. The idea is to maximize efficiency and minimize toxicity.
Very interesting stuff, and very hopeful. I quoted someone from the support group once, whose doctor told her "If we can keep a patient alive for 5 years, we can keep him alive for 50." That certainly seems to be the attitude that these researchers are taking. Maybe it won't be 5 years before we know how to effectively personalize treatment -- maybe it will be 10 -- but there are certainly enough options out there to treat people until researchers can figure that out.
Hope you enjoy the video. (Or skip it, since it probably took you a half hour to read my summary anyway.)
Sunday, January 4, 2009
Health Insurance
Yesterday, my beginning-of-the-year health insurance plan summary came in the mail.
I'm extremely fortunate to have a good job with lots of security, that also includes excellent health care as one of its benefits.
From what my plan summary says, I'm pretty well covered for any of the typical NHL treatments out there. Rituxin. Chemotherapy. Even stem cell transplants, including coverage for travel and lodging for a companion, should I need to go someplace else. (Which is unlikely, given that Yale's Med School specializes in stem cell transplants, and they're 10 minutes away. But it's nice to know that's available.)
CT scans. PET scans. MRIs. There's even a provision for up to $350 for a wig, post-chemo. I'll give that some serious consideration, given that right now my hairline starts about two inches from the back of my neck.
I'm even covered for participating in clinical trials (phase III, multi-site).
I'm very lucky, and I know it. And I know there are lots of others who aren't so lucky.
There are all kinds of stories coming out of my support group about people who have no insurance, or inadequate insurance. One woman on the list has been updating us daily about her stem cell transplant. She's physically weakened, of course, from the intense chemo, and has been fighting with her insurance company every step of the way. She's sent us pictures of the facility she's in, and it's a mess. It's a little scary.
We need serious health care reform in this country. I try to keep politics out of this blog, but I'm hoping some good comes out of the economic mess we're in, and people with no or little coverage will get some help. I'm not so naive as to believe that either Obama's or McCain's health plans will be (or would be) the perfect solution, and I'm even less confident that either of their plans will be (or would have been) passed without all kinds of changes from an insurance-industry-lobbied Congress. But something's got to change.
I'm extremely fortunate to have a good job with lots of security, that also includes excellent health care as one of its benefits.
From what my plan summary says, I'm pretty well covered for any of the typical NHL treatments out there. Rituxin. Chemotherapy. Even stem cell transplants, including coverage for travel and lodging for a companion, should I need to go someplace else. (Which is unlikely, given that Yale's Med School specializes in stem cell transplants, and they're 10 minutes away. But it's nice to know that's available.)
CT scans. PET scans. MRIs. There's even a provision for up to $350 for a wig, post-chemo. I'll give that some serious consideration, given that right now my hairline starts about two inches from the back of my neck.
I'm even covered for participating in clinical trials (phase III, multi-site).
I'm very lucky, and I know it. And I know there are lots of others who aren't so lucky.
There are all kinds of stories coming out of my support group about people who have no insurance, or inadequate insurance. One woman on the list has been updating us daily about her stem cell transplant. She's physically weakened, of course, from the intense chemo, and has been fighting with her insurance company every step of the way. She's sent us pictures of the facility she's in, and it's a mess. It's a little scary.
We need serious health care reform in this country. I try to keep politics out of this blog, but I'm hoping some good comes out of the economic mess we're in, and people with no or little coverage will get some help. I'm not so naive as to believe that either Obama's or McCain's health plans will be (or would be) the perfect solution, and I'm even less confident that either of their plans will be (or would have been) passed without all kinds of changes from an insurance-industry-lobbied Congress. But something's got to change.
Thursday, January 1, 2009
Happy New Year
I've been reminiscing a little bit. The turning of the calendar brings on that kind of thing naturally, especially with all those year-in-review articles all over the place. (Like this one.)
So here's what I've been thinking about.
A year and a day ago, I was in a car accident.
I had gone to see a surgeon in mid-December last year about the swollen lymph node near my hip. He gave me an exam, and couldn't find anything wrong. So we decided I'd try an antibiotic for 10 days to see if the node was swollen because of an infection. Then he looked over the results of the CT scan I'd had in October (which had been ordered to figure out why I was having that strange tightening in my chest.) The CT scan had shown some spots on my liver, most likely a (very benign and common) cluster of blood vessels. I was happy enough with the "probably the common and benign thing" and was happy to leave it at that. The radiologist had recommended a more detailed MRI; the surgeon seconded the recommendation ("If it was my liver, I'd want to know for sure"). So he set up the MRI for me for the morning of December 31 of last year.
I went downtown for the MRI. Not fun. I'm not claustrophobic, but the MRI machine kind of squeezed my shoulders in for almost an hour. The MRI turned out to be negative. I left the radiology center, and three blocks later my car was hit by a young woman who ran a stop light. She was looking over her shoulder, speeding up to pass someone. Our beloved car was totalled. (Beloved because it was old and thus had cheap insurance and property taxes.)
The car didn't look too good. But I got out of it right away. As a precaution, I was strapped to a backboard -- an hour strapped to a board for the MRI, then another 30 minutes strapped to a board for the ride to the hospital. I had some glass removed from my hand. I was otherwise fine.
In the meantime, the antibiotics didn't work, I had the node biopsied, and got the diagnosis news a couple of weeks after the accident.
So that's what I've been thinking about over the last couple of days. Especially yesterday, when we got 4 inches of snow and I had to run a few errands in the slippery muck. Not obsessing --just thinking. You know, Year in Review stuff.
But, really, all things considered, 2008 wasn't such a bad year. After January finally left, I was pretty healthy, physically (and mentally, as I learned to cope with being a cancer patient. The blog helps, by the way, probably more than you can imagine). In 2008, we had some very good times with family (in Florida, in Massachusetts, and in Maryland). I started playing guitar. The kids did well in school. I ran a bunch of 5Ks.
I had plans to run a race this morning -- the Chilly Chili Run, a 5K road race followed by a chili brunch. I decided against it, not because we were up past midnight last night and I was tired, but because I thought that running in 4 inches of snow with 8 degree wind chills would be worse for me than whatever emotional benefits I might get from a run.
But the important thing is, I had plans to do it, and I felt healthy enough to have accomplished it.
I can't really ask for much more than that.
Well, tomorrow is Isabel's and my 16th anniversary. So I guess I could ask for more than that. And receive it.
Have a happy and healthy new year, everyone.
So here's what I've been thinking about.
A year and a day ago, I was in a car accident.
I had gone to see a surgeon in mid-December last year about the swollen lymph node near my hip. He gave me an exam, and couldn't find anything wrong. So we decided I'd try an antibiotic for 10 days to see if the node was swollen because of an infection. Then he looked over the results of the CT scan I'd had in October (which had been ordered to figure out why I was having that strange tightening in my chest.) The CT scan had shown some spots on my liver, most likely a (very benign and common) cluster of blood vessels. I was happy enough with the "probably the common and benign thing" and was happy to leave it at that. The radiologist had recommended a more detailed MRI; the surgeon seconded the recommendation ("If it was my liver, I'd want to know for sure"). So he set up the MRI for me for the morning of December 31 of last year.
I went downtown for the MRI. Not fun. I'm not claustrophobic, but the MRI machine kind of squeezed my shoulders in for almost an hour. The MRI turned out to be negative. I left the radiology center, and three blocks later my car was hit by a young woman who ran a stop light. She was looking over her shoulder, speeding up to pass someone. Our beloved car was totalled. (Beloved because it was old and thus had cheap insurance and property taxes.)
The car didn't look too good. But I got out of it right away. As a precaution, I was strapped to a backboard -- an hour strapped to a board for the MRI, then another 30 minutes strapped to a board for the ride to the hospital. I had some glass removed from my hand. I was otherwise fine.
In the meantime, the antibiotics didn't work, I had the node biopsied, and got the diagnosis news a couple of weeks after the accident.
So that's what I've been thinking about over the last couple of days. Especially yesterday, when we got 4 inches of snow and I had to run a few errands in the slippery muck. Not obsessing --just thinking. You know, Year in Review stuff.
But, really, all things considered, 2008 wasn't such a bad year. After January finally left, I was pretty healthy, physically (and mentally, as I learned to cope with being a cancer patient. The blog helps, by the way, probably more than you can imagine). In 2008, we had some very good times with family (in Florida, in Massachusetts, and in Maryland). I started playing guitar. The kids did well in school. I ran a bunch of 5Ks.
I had plans to run a race this morning -- the Chilly Chili Run, a 5K road race followed by a chili brunch. I decided against it, not because we were up past midnight last night and I was tired, but because I thought that running in 4 inches of snow with 8 degree wind chills would be worse for me than whatever emotional benefits I might get from a run.
But the important thing is, I had plans to do it, and I felt healthy enough to have accomplished it.
I can't really ask for much more than that.
Well, tomorrow is Isabel's and my 16th anniversary. So I guess I could ask for more than that. And receive it.
Have a happy and healthy new year, everyone.