Thursday, December 30, 2010

A Sad Elvis Story

This morning, I saw this story about an Elvis impersonator who has had to end his 50 year performance streak because of his cancer treatments. He's feeling too weak, and he can't shake his leg the way he'd like to. Kind of sad, though he seems very positive about it all, and his friends will fill in for him for his scheduled New Year's Eve concert at St. Peter's Church in New Jersey tomorrow night.

I don't know if you've ever seen an Elvis impersonator live, but if not, I highly recommend it. Reading the story reminded me of my own first encounter with an Elvis impersonator. We'd actually just told the kids about it on Christmas Eve, as we read through our Christmas Memory book and shared stories.

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It was October of 1996. I remember the date very well, because Isabel was pregnant with Peter, during that crazy first trimester when she could only hold down plain saltines, she occasionally fell asleep standing up, and she went to work one day wearing two different shoes (which is a story for another time). That entire year was insane, with Peter on the way, my trying to finish my dissertation and get a job somewhere so I could take care of my growing family.

Part of my job-hunting strategy was to strengthen my credentials as a scholar, which meant I needed to present my research at academic conferences in front of other scholars. I was forunate enough to get two conference presentation proposals accepted for the fall, one for October and one for November -- just in time to put them on my job applications in December.

The first one was for a conference on popular culture and American culture, in Savannah, Georgia. While these days I have the luxury of flying to conferences and staying at nice hotels, back then it meant driving and staying at the cheapest, safest hotel we could find in the AAA tourbook. The Savannah conference was no different. Isabel and I drove from Louisville to Chattanooga, where we picked up our friend Lauren and stayed at her place for the night, and then drove on to Savannah the next day. We stayed at a cheap hotel that night. Normally, we'd have found something fun to do, but given Isabel's condition, we had dinner with Lauren and then I put Isabel to bed.

The next morning, we checked out of our room and stored the luggage in the trunk of the car. I was scheduled to make my presentation that morning, and then we were going to drive back to Louisville in the afternoon. But when I checked my program booklet one last time to see if there was anything I wanted to see before we left, and I saw the listing: Rick Marino, President of the EPIIA (Elvis Presley International Impersonators Association), would be speaking and performing.

So after my presentation, and a hearty lunch of saltines and water, Isabel and I made our way to the main ballroom of the hotel that was hosting the convention. Actually, I made it to the ballroom; Isabel made it as far as the hotel lobby. Since we'd checked out of our hotel, she couldn't even go back to the room and rest, so she found an empty couch in the lobby and curled up and went to sleep.

The ballroom was packed -- probably 800 academics, researchers, and scholars of popular culture and Amercian culture filled it to Standing Room Only capacity. Mr. Marino first lectured us. We heard about his family: his mother's uncle was Enrico Caruso, the Italian opera singer; his dad was a former Mr. America bodybuilding champion. He told us about how he came to love Elvis, and about how much he paid for his white, rhinestone-encrusted, big-collarted jumpsuit. He told us about what it was like to appear in the movie Honeymoon in Vegas. He spoke about the role that Elvis played in American culture.

And then Rick Marino sang.

And it was good.

While I was able to keep some emotional distance from the performance, I was amazed at the women in the audience. Moments before, they had been serious academics, nodding and thinking about how the arc of Elvis' career represented the changing (maybe declining?) values of the national culture. And now, as Rick Marino sang, they were reduced to quivering bowls of jelly. The two middle-aged women in front of me screamed -- genuinely screamed -- when Rick Marino ran a silk hankerchief over their faces and dropped it in one of their laps.

The power of Rick Marino? Or the power of Elvis?

Either way, you can bet that when it was over, I woke up my pregnant wife and got her off that hotel lobby couch and the hell out of there before his power overtook her, too.

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A month later, I dragged Isabel to Chicago for the other conference. This one didn't have Elvis impersonators, just people talking about business communication. We couldn't afford another hotel, so we left Louisville at 9:00am, arriving in Chicago about 3:00pm. We had this routine down by now; Isabel claimed a comfy lobby couch for her nap.I gave my presentation at 4:15, changed clothes, and we were back on the road by 5:00pm, just in time to hit downtown Chicago rush hour traffic. And then it started to snow.

On the way home, Isabel felt well enough that she thought she could handle McDonalds for a quick dinner. By about 6:30, she was so miserable that I told her we were going to stop and find a hotel for the night. "NO!" she screamed at me. "DRIVE! GET ME HOME!" So she slept next to me as I drove from one end of Indiana to the other, our radio picking up nothing but high school football games and static-filled country music.

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EPILOGUE:

The two presentations went a long way in helping my job applications look good. I got a job that I love, and we ended up with a beautiful baby boy.

Rick Marino still does Elvis impersonations. Click on the "Rick Marino sang" link above for a sample performance he did in Argentina last year, and be sure to read the comments below the video for trash talking from Marino's fans and the fans of other Elvis impersonators about who the best impersonator is. Awesome.

But mostly, I hope Ted Prior, the Elvis impersonator with cancer, does OK with his treatments.

A happy and healthy New Year to him, and to all of you.

Tuesday, December 28, 2010

The Storm

Well, we made the very difficult decision to come back home on Sunday morning, before the Blizzard of 2010 hit New England. It was probably the right thing to do, and we got home safely before the snow and wind hit us, but it was still difficult to leave everyone after such a short visit.


At least the kids got to enjoy their Christmas gifts while they were nestled at home, cozy in the new Snuggies that we bought for each of them. (Yes, they can stop stealing our Snuggies. Peter's new Snuggie has the Patriots' logo, John's is in a jaguar print, and Catherine's is "princess" themed, pink, with white fake fur cuffs.)

We spent a couple of hours digging ourselves out yesterday, made homemade soup for dinner, and played Wii games (Isabel and I both suffered injuries, though I'm sure they came from shoveling and not from Wii Just Dance 2). Then this morning, we all went sledding. The boys came close to mastering the sledding move known as the Belgian Open-Faced Sandwich (Peter lies down on his stomach on his tube; John lies down on Peter, facing up, hugging his own tube; halfway down the hill, John flips off of Peter, does a 180, and lands on his tube. Let's just say it didn't work out as planned.)

So now, all is calm, all is bright, and nice quiet Wii games beckon.

Sunday, December 26, 2010

Merry Christmas

I had planned on maybe discussing my favorite TV Christmas specials on this most special of days, but then I came across a video that gave me pause. As much as I love the Heat Miser and Snow Miser, Charlie Brown's sad little Christmas tree, and the Chuck Jones-Boris Karloff-Dr. Seuss triumverate that made The Grinch so awesome, I was mesmerized by what I saw the guys at Epic Meal Time do.

I have occasionally used Lympho Bob to look at astounding feats of food before, but this one, with its Christmas theme, just might top them all. You'll have to watch the video yourself, with its variations on traditional Christmas treats like eggnog and gingerbread houses, but I'll at least tell you that the whole "meal" weighs in at 86,997 calories. (Which means it would, based on recommended calorie intake, quite literally feed most people for a month).

So why show this to you, especially on the day after Christmas? Well, for a few reasons. First, there is the long tradition of serving food like this for Christmas. Not exactly like the food in the video, but close (listen to the Veggie Tales Polish Christmas caterer song for evidence). Second, I thought this video would have been inapproriate for Christmas day, because some people might find it gross. (Not sure why, but they might.) But for the day after Christmas, it serves as incentive to get those New Year's resolutions written down so you can start following them. You don't want to be like the guys in the video, even if you had the kind of metabolism that would allow it. Because for most people, burning off that meal would mean running 580 miles, or a month of 26 mile marathons (with weekends off to rest).

Seriously, though, I hope all of my Lympho Bob readers had a Merry Christmas, or another happy holiday that you celebrate at this time of year. It was a tough year in lots of ways, especially at the beginning, but it seemed to get better with time -- and that's what we hope for.

Thursday, December 23, 2010

Biovax Update

As promised a few posts ago, there was some news out of the ASH Conference this month concerning the Biovax lymphoma vaccine. Biovest, the company that makes the vaccine, has issued a Frequently Asked Questions bulletin about the vaccine, accessable by clicking here.

According to the FAQ, the clinical trial that was conducted recently did more than just show that the vaccine extended progression-free survival by over a year; it also created some new scientific knowledge about follicular lymphoma: they discovered that a particular protein variation is present on the cancer cells of some patients, and thus in the vaccine (since it is made for each individual patient based on a sample of his or her cells). Those who have this variant, and who were thus treated with the particular variant, had a much longer remission than the others. Previous attempts at a lymphoma vaccine have known about this variant, but did not think it was important. This trial shows that it was very significant.

This has some important implications for the Biovax vaccine: about 50-70% of fNHL patients have this particular protein, and thus would seem to likely benefit from the vaccine; for other types of NHL, pretty much all patients have that protein variant.

This is very exciting news. Vaccines have held a lot of promise (the NHL specialist I saw soon after I was diagnosed was very big on vaccines), but haven't lived up to thjat promise, at least up until now. This seems like a big breakthrough for vaccines, and I'm guessing that further research will improve them still.

Tuesday, December 21, 2010

fNHL Breakthrough?

Patient Power has a new video from the ASH conference on a new type of treatment for Follicular NHL --the Antibody Drug Conjugate.

The video features an interview with Dr. Andre Goy, who is in charge of Lymphoma research at the John Theurer Cancer Center in New Jersey. Smart guy -- he was involved in the early Rituxan trials, helped develop Velcade, and leaps tall building in a single bound (or so it would seem, given what this man has accomplished).

Antibody Drug Conjugates (ADCs) are a new class of cancer treatment. They are kind of similar to RadioImmunoTherapy, in that they involve a monoclonal antibody that can find lymphoma cells based on proteins on the cancer cell's surface. But while RIT delivers a dose of radiation directly to the cancer cell, an ADC delivers a dose of chemotherapy.

This is a very useful delivery system. The problem with traditional chemo, of course, of that it takes a shotgun approach and blasts everything in its path, which is why toxicity and side effects are a problem. ADCs are guided missles, delivering the chemo directly to the cancer cell, sparing all of the healthy cells that would otherwise be damaged by it. As Dr. Goy describes, his trial involved the ADC delivering a chemo drug that is 1000 times stronger than anything that could be delivered intraveneously. The targeted approach allows this small but powerful dose of the drug to get right to where it needs to be.

The trial was fairly successful, and Goy and his team have plans to reduce the major side effect (lowering of platelet counts) that came up for some patients.

As the interviewer says, "Chemotherapy is not dead." It's getting better, more effective, less toxic, more personalized.

Very exciting new development.

Sunday, December 19, 2010

Personalized Medicine @ Yale

This morning's New Haven Register has a story about the relatively new Yale Center for Genome Analysis, housed at the relatively new Yale Cancer Center. Fascinating article (and video).

The Genome Center looks at samples of cancer cells to get a look at the genes in the cell, to determine which parts of the gene are messed up. Follicular NHL, for example, has its own mess-up: I think it's that chromosomes 14 and 17 are switched. I forget exactly. That kind of thing involves numbers, and you know how I feel about numbers and my cancer.

I don't need to understand all that, because these good folks at Yale understand it. I was amazed at some of the things they said in the article -- like about the cost of doing this kind of analysis: “The cost of sequencing DNA has come down by more than five orders of magnitude in the last 10 years, so that rather than costing $100,000 to sequence a million bases of DNA, it now costs 25 cents ... and the cost is going to continue to plummet." Continue to plummet? How much farther can it plummet from a quarter, for cryin' out loud?

Not that I'm complaining. I know the new director of the Yale Cancer Center has made it a priority to make sure that all cancer patients at their hospital have a biopsy on file that can undergo this analysis, for the time when their particular cancer can be treated based on molecular analysis. This is, in my humble opinion, the future of cancer research -- examining the particulars of a cancer cell and determining treatment based on what's found. That kind of thing is already happening, and the intense gene-level focus should mean treatments that are less toxic because they can hit just the cancer cells.

So, once again, I have to say thanks to Yale (for their state-of-the-art cancer hospital; I've already said thank to them for their great art museum, awesome natural history museum, and cool hockey arena). I like that they're about 15 minutes away from me, in case their services should prove useful. Not that I'm in a hurry....

Thursday, December 16, 2010

NHL News

The Magazine Coping with Cancer has a nice piece this month on emerging treatments for Non-Hodgkins Lymphoma; you can access the online version of the article here.

I don't think there's anything startlingly new here, but it's a good review of what's going on in NHL treatment right now. Some of my pals are mentioned: Velcade, which works by causing cancer cells to poison themselves; Bendamustine/Treanda, an advanced chemotherapy with much less toxicity and fewer side effects than most other NHL chemos; Biovax, the NHL vaccine that seems to be finally living up to its promise; and, of course, my intimate friend Rituxan -- my NHL BFF, if you will.

I like these review articles, even if I'm already aware of all of the information that's being given. They're a good reminder of how many treatment possibilities exist now, and how many very promising ones are in the pipeline --- even a fraction of them end up being an improvement on what's available now, that's a great thing.

Speaking of the Biovax vaccine: a presentation at the ASH conference showed some additional good news. I can't find it right now, but I will, and I'll post soon.

Monday, December 13, 2010

Happy Birthday

Yesterday was sometime-guest-blogger Strudel's birthday. Our baby is four years old.

Isabel and I had a typically busy day, but we did manage to make her a small cake (which she enjoyed quite a bit), and bought her a special meal -- a can of Turducken dinner. And we gave her a stuffed squeeky toy, which she typically tears apart in about 3 minutes, but which is still intact, 24 hours later. This just shows how grown up Strudel is now.

The kids and I had planned to make a birthday video for her, but we just couldn't find the time. Maybe we'll get to it during the lazy week after Christmas.

For now, you'll just have to enjoy the video slide show from her 2nd birthday. An oldie but a goodie....


video

Friday, December 10, 2010

What Not to Say

OK, this link is funny, but a little rude (so be warned before you click).

I've covered this subject before, but not in such a humorous way: the things that people do and say to cancer patients that really aren't very helpful.

This particular take on the subject comes from Glenn Rockowitz, a writer and comedian who is also a four (4!) time cancer survivor. The name of the article is "It's Funny Because It's So, So True: How Not to Cheer Up a Cancer Patient." It was first published in Seattle Weekly, but it's available online at Planet Cancer (a website geared toward young (18 to 40 year old) cancer patients).

Rockowitz hits on a lot of the problems that cancer patients occasionally encounter with people who mean well, but say or do the wrong thing. Some of my favorite lines from the piece:
  • As he was recovering from cancer surgery, Rockowitz received a basket of limes from his employer with a note that said "You'll do anything for attention." He assumed the note was an attempt at humor, and was confused by the limes. I especially liked that one because I've used a variation of the "attention" joke on someone else, and I think random fruit baskets are hilarious. But it didn't work so well for Rockowitz.
  • When people do something nice for a cancer patient, like make dinner, and the giver doesn't get a thank you and gets upset, Rockowtiz says to understand that the cancer patient probably has other things on his mind. "Please assume that your lumpy pal is grateful. And not just lazy or thoughtless." Your lumpy pal. I love that.
  • At the same time, says Rockowtiz, only cancer patients can make cancer jokes. I totally disagree. I'm desperate for new material and I wish someone, lumpy or smooth, would send some cancer humor my way.
  • Go easy on suggesting alternative "cures" for cancer. They're unproven; if they were proven, there wouldn't be any cancer. "Look, I know you mean well, but I have yet to see anyone pull out of a pancreatic cancer tailspin by sucking on a panda's claw for two hours a day." He also mentions something about Bosco enemas.

Anyway, pretty funny stuff, and the sprinkling of humor makes the advice go down a little smoother.

And, of course, none of this applies to my own family and friends, who are wonderful and sensitive in all ways. (It's the strangers and acquaintances who cause problems....)

Wednesday, December 8, 2010

Elizabeth Edwards

I've been reading a lot about Elizabeth Edwards in the last day or so. Very sad. But much of what I've read is commentary on how strong she was.

I very, very rarely write on Lympho Bob about people who have died from cancer. I see this as a place for Hope. Even my Nodes of Gold inductees are all survivors. But I feel like I should comment on Elizabeth Edwards, because if she was about anything, she was about Hope.

Maybe part of the reason she's been written about so much is that kind of macabre fascination we have with people seem so beaten down. Good gravy -- how much worse could it get for someone? The day after her husband loses in 2004, she gets her cancer diagnosis. Then during the 2007 campaign, she gets news about the relapse. All of this comes after she's getting over another family tragedy. And then she gets hit with the news about her Husband. It's just all piled on her. It seems so unfair.

But that's where the Hope comes in. If you read the book Game Change, about the major players in the 2008 presidential election, you saw that Elizabeth Edwards was not depicted very well. She came off as kind of a control freak. But I think that attitude is what kept her alive as long as it did. She doesn't strike me as someone who took No for an answer.

I've read a couple of commentaries about Edwards in the last day or so that have stuck with me, both from lymphoma survivors. One is by Betsy de Parry, on AnnArbor.com, and the other is by Jonathan Alter, a columnist for Newsweek, published by thedailybeast.com. On her Facebook page, Betsy points out that both she and Alter were appalled by the criticism that lizabeth Edwards received when she and her husband chose to continue his presidential campaign in 2007 after she was diagnosed with cancer a second time. I'm in full agreement with them in being appalled.

I probably wasn't at the time; I probably thought, like a lot of people, that John Edwards should have dropped out and she should have focused on her health. But now I say, Forget that.

I have this conversation with myself a lot. At what point does someone just kind of drop out? At what point do you say, "I'm sick, so I'm not going to do X anymore." Think about it, though, and take a step back. If I say, "I'm going to stop doing X at work," what's to then stop me from going to work at all? I mean, what's the point of working now if I'm not going to be around to enjoy my retirement? Keep taking that a step back -- why even get out of bed if I'm not going to work? Why go to my kids' games or concerts? When does that choin of thought ever end? Why go on living at all if things are bad right now?

I don't know if I'm explaining it well, but what I mean is I can see how people can let their sadness and hopelessness spin out of control. I don't allow myself to get that way, and Elizabeth Edwards obviously didn't, either. "As long as you're not dead, you're alive," she said once .

Amen to that. What would she have done if he'd quit the presidential race? Would they have sat at home and stared at each other until her next doctor's appointment?

No, there's no sense in living like that. Agree or disagree with John Edwards' politics, but too many lives had to go on even though Elizabeth got sick. There was no sense in quitting just because of her. Too many potential regrets for everyone involved. Too much sitting around and waiting....

So I'm saddened to hear about Elizabeth Edwards, but I'm taking her death as a good time to remind myself about what's important. Hope. Fighting. Not regretting. Looking to the future, even if it's uncertain. She wasn't a perfect person, but she left a good legacy, for cancer patients and everyone else.

Monday, December 6, 2010

ASH Video

Patient Power is at the ASH Conference, and provides a nice video summarizing what they think are some of the biggest stories in Lymphoma this year.

(I've featured video from Patient Power before. It's an organization that does a very good job of empowering patients to understand their disease and take control of their treatment -- or at least not leave it all in someone else's hands.)

This video features an interview with Dr. Anas Younes, a very well-known lymphoma expert from MD Anderson in Houston. For the first part of the video, he discusses some new treatments for Hodgkin's Lymphoma, ad then about another type of NHL, anaplastic large cell lymphoma.

But the relevant and interesting discussion comes at about the 7 minute mark, where he discusses the subject of watching and waiting. Dr. Younes thinks that after this ASH meeting, watching and waiting will be "dead" -- there is evidence that giving Rituxan early on will yield better results than W & W, but with minimal toxicity (see the Lympho Bob entry from a couple of weeks ago on this subject).

So maybe I'm among the last generation of patients to go through W & W as an initial treatment option. Which is kind of cool, I guess, if 20 years from now some fNHL patient says to me, "What? You didn't treat? You waited 2 full years when Rituxan was available? How barbaric!"

Even better -- maybe in 20 years, the whole idea of fNHL will be history.

Anyway, here's the video. And check out the other video at the bottom of the page, where Andrew Schorr, Patient Power founder, reviews the first day of the ASH conference. Lots of nice stuff there, too.

Friday, December 3, 2010

Boston Accents

I got a haircut yesterday. Since I went on a weekday morning, it meant that I got the same crazy lady who's been cutting my hair for years -- the one who told me last year that I could have my lymphoma cured through blood transfusions. Still waiting on that one to come true....

But before it was my turn in the chair, I read an Entertainment Weekly from a couple of weeks ago. One of the letters to the editor was from a reader from Sharon, Mass. who praised an EW article from a couple of weeks before that discussed Boston accents in movies. I looked online to find the article on the EW web site, but it's not there. Bummer. (Or bummah.)

The article reminded me that, about a year ago, I started a Lympho Bob post on good and bad Boston accents in movies. I think I had just seen The Departed or Mystic River, and was horrified by someone's attempt at a Boston accent. I never did get around to finishing the blog post, because I couldn't find a YouTube clip of Rob Morrow's horrendous Boston accent in the movie Quiz Show. Apparently, he thought that if you talked through your nose like JFK with a head cold, you had that accent down. Horrible. Worst Boston accent ever on film, in my humble opinionation.

As I was googling the EW article, I came across a couple of other opinion pieces on the subject of Boston accents by actors. I liked this one from New York magazine from last January, criticizing Julianne Moore's bad Boston accent in the TV show 30 Rock. I watch the show only occasionally, so I don't know much about her character, but I don't think she does a great job with the accent. You can see a clip at the bottom of the New York piece, or check out this one, which has the added bonus of making fun of Maryland accents.

Anyway, As much as I like Julianne Moore, the writer of the New York article adds her to the Bad Boston Accent Hall of Fame, and is justified in doing so. The piece also mentions some others that I would agree with as being particularly bad, including my Quiz Show choice, plus Tim Robbins in Mystic River, Joe Pesci in With Honors, Diane Lane in The Perfect Storm, Jeff Bridges in Blown Away, and Jack Nicholson in The Departed ("partially because Jack forgot he was doing a Boston accent half the time").

And they praise Mark Wahlberg and Matt Damon for having authentic accents in The Departed. Of course they're authentic -- they grew up in Boston.

Anyway, another article about Julianne Moore says she learned her Boston accent because, as she says, “I worked in a bar called the Up and Up Lounge in Kenmore Square on top of a Howard Johnson’s and that’s how I learned to talk like that. Everyone was from Dorchester or Somerville.”

But I say No Way -- she's lying. No way people from Dot are going to Kenmore Square to drink. Same for Somerville. If they were in Kenmore, it was for a Sox game, and they'd never walk over to Comm Ave for a beer. I know -- I lived about 3 blocks from that Howard Johnson's. You'd pass 12 other bars between Yawkey Way and that Howard Johnson's, and if you went into any of those others, you wouldn't need to wait for an elevator like with the Up and Up. In fact, most are at ground level to make it easier to stumble right in and out of. She's lying, and it explains why she did such a crappy accent.

But I have to say, I loved the line from that article that came a few sentences after her quote about the Up and Up: "This is even better than if Julianne Moore had worked at the Ground Round in Cleveland Circle!"

I'll admit I never drank at the Up and Up, but I sure traveled down to Cleveland Circle more than once for those Ground Round steak fries and mudslides made with vanilla soft serve ice cream instead of crushed ice and half-and-half. Killer. Worth the ride down the Green Line, even if it meant drinking in the shadow of Boston College.

Ah, memories. What's left of them, anyway....

Tuesday, November 30, 2010

Good Numbers

I'm not much one for numbers and statistics, because it's too easy to look at the negative side of them or imagine that they speak an absolute truth instead of a possible trend, but these numbers represent some good news:

Over the last 10 years or so, deaths and complications from blood cancers (leukemias and lymphomas) have dropped significantly. The article from HealthDay is here.

Researchers from the Fred Hutchinson Cancer Center in Seattle (a major lymphoma treatment and research center) looked at 2500 blood cancer patients between the early 90s and 2007, and found over that time a 41% drop in mortality (along with other positive trends -- read the article for more details).

The study looked especially at bone marrow and stem-cell transplants, and pointed to advances in understanding how those transplants work, how to avoid complications like infections and organ damage, and how to best deal with complications that do arise.

Pretty significant stuff. Right now, transplants are used a lot of times as a kind of last resort (or close to last resort) for lots of blood cancer patients, including those with Follicular NHL. It's a pretty aggressive treatment usually, involving some heavy duty chemo, although more recently, transplants have evolved to sometimes not require such nasty conditioning.

It's all yet another positive trend in lymphoma treatment. We're getting better from both ends: the most aggressive treatments and the least aggressive (targeted therapies like monoclonal antibodies). All more reasons to be hopeful.

Sunday, November 28, 2010

From ASH

Next week, the annual ASH conference takes place in Orlando. That's the American Society of Hematology -- all those great researchers who are working on blood diseases, including lymphomas. There are usually a ton of great papers every year reporting on research related to follicular lymphoma. I'm going to try to highlight some over the next week or so.

This first one doesn't necessarily affect me anymore, but I think it's pretty significant. It's called "An Intergroup Randomised Trial of Rituximab Versus a Watch and Wait Strategy In Patients with Stage II, III, IV, Asymptomatic, Non-Bulky Follicular Lymphoma (Grades 1, 2 and 3a). A Preliminary Analysis." When the title is that long, you can just imagine how complicated the rest of the abstract is, huh?

But really, it's pretty simple. The researchers wanted to investigate a question that's been asked about a long time. The question is, If watching and waiting is meant to buy some time between treatments, is it still necessary now that Rituxan can do such a great job buying time for us instead?

The researchers looked at 3 groups of patients who might traditionally employ a watch and wait strategy. One group did watch and wait, the second was given 4 rounds of Rituxan, and the third was given 4 rounds of Rituxan and then Rituxan maintenance (more every 6 months). You can read the abstract for yourself, but basically, those who had Rituxan went longer than the watchers until they needed treatment again.

So, as I said, it's not something that affects me anymore, but it's important for fNHL folks in general, especially newbies. The study isn't definitive, but it's going to be enough to get oncologists thinking about their strategy, I'm sure. And it's one more reason to be impressed with Rituxan.

Thursday, November 25, 2010

Gratitude

This past weekend could charitably be called "crazy." We're in that tough part of our lives where the kids are too old to need naps, too young to drive, and just the right age to have lots going on in their lives. Isabel and I, on the other hand, have plenty of our own going on, are just the right age for naps, and sick of driving around.

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Friday night I had a stomach bug. I felt much better Saturday morning, but I skipped my Saturday run. Instead, I moped around and waited for everyone else to get up. I checked the calendar for the day: the kids had altar server training at 9:00. At 11:00, we needed to all go to the school to set up for Sunday's advent wreath workshop, which Isabel had been roped into organizing a month ago. Then at 3:00, we had tickets to the Quinnipiac University basketball game, which we got for $1 each, since QU students had left town for their week-long Thanksgiving holiday, which I knew about from my niece.

On top of that, I had promised the kids a couple of things: that we'd rake leaves on Saturday, but leave them in piles so they and the dog could jump into them (we'd save the bagging for Sunday). I also promised Catherine that she and I would (finally) make some homemade pasta for Sunday dinner, something we'd been talking about for a while.

Then I got a very early morning e-mail from the editor of a journal: an article I'd been writing needed to be finished by Monday so it had time to be edited and sent to the printer. I'd been putting that off for a few weeks because I didn't like the changes they were asking me to make.

I added one more item to the list: buy a turkey. I'd seen in the newspaper on Friday that the Connecticut Food Bank was holding a "stuff a bus" event from 10 to 7 on Saturday outside a grocery store down the street from us. I try to participate every year. We've already donated to about 5 food drives so far this holiday season, but donating a whole turkey just seems to mean so much more. I think about families that are having it tough this year, have had their lives up-ended by losing a job or something, and maybe a turkey on Thanksgiving will make things feel just a little bit more normal for one day.

So I added "buy and deliver turkey" to the calendar.

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When Isabel woke up, she reminded me that the advent wreath workshop was also going to include a bake sale to raise money for the school parents' group, and that we'd promised to make some allergy-safe treats. So while Isabel took a shower, I ran to the grocery store to get the ingredients for cupcakes and brownies. I told her I was going to buy the turkey, too, while I was there. "The food collection doesn't start until 10," she said. "Where are you going to put it until then?" I checked the freezer, which was pretty full, and agreed that we 'd be better off stopping for the turkey later, when we could drop it off right away.

So I went to the grocery store while Isabel showered and got the kids up and ready. But she let John sleep; he'd been up early complaining of stomach problems. The same stomach bug I had? Ugh. That would certainly put a cramp (ha) in our busy day.

Isabel took Peter and Catherine to the altar server workshop at 9:00 while I did some baking and John slept. In between filling cupcake holders, I tried to sneak off to my laptop to work on the article that was due Monday.

About 10:15, Isabel came home with Peter and Catherine, and woke up John, just as the brownies were coming out of the oven. We had a few minutes to feed John (who felt much better) and get up to the school to set up for the next day's Advent wreath workshop. This meant setting up tables, counting out greens (90 pounds of tree branch tips from a local greenhouse), and making 19 wreaths for people who wouldn't be able to join the other 100 families that signed up for the workshop. We realized we would probably be short on greens, so I volunteered to drive to Branford to get another 80 pounds (I had the only minivan in the group) while Isabel supervised the rest of the work. We were finally done with all of that by about 1:30. We ate lunch, Isabel took a quick nap, and I chipped away some more at my article.

At least until Strudel begged me to take her outside and play for a few minutes, since she'd been inside the house all day with no exercise.

I hadn't planned on all of that taking quite as long as it did, so there was no time to rake leaves. And I still hadn't forgotten about buying that turkey.....

**********************

At 2:30, we piled into the car and drove to the basketball game. Which was fun. QU fell behind big, but came back with 2 minutes left. Too little, too late, though -- they lost by 4. But every kids youth sports group in town was offered those $1 tickets, so we saw about a hundred people we knew, which was nice for everyone. It was a good time.

(I think it was not so much a basketball game as a celebration by the people of Hamden that the QU students had left town for a week....)

The game was over at 5:00, and the kids were hungry, so we stopped for dinner on the way home -- the best hot dogs in the state. I still hadn't forgotten my turkey, so we made the kids eat quickly. They wanted to stop for ice cream, but I really wanted to get to the store and drop off the turkey (I knew they were only collecting until 7:00), so I said I'd buy ice cream at the grocery store and we could eat it at home.

As we pulled into the grocery store lot, Isabel asked me what the smallest turkey they had was likely to be. I had no idea, but "15 pounds" kind of sparked a memory. "Why do you ask?" I said. "Never mind," Isabel said. "What's going on?" I asked. She said she missed Thanksgiving leftovers, since we often travel far for Thanksgiving, and she thought a small turkey that we could make ourselves when we got back would give her the turkey sandwich fix that she'd need next week. I promised to look for a small one.

I did find a small 12 pound turkey for us, plus a bigger one to give to the Food Bank, plus ice cream for John, and then ice cream for the other two kids. Actually, I got two containers of ice cream for the other two, since they were on sale, and they had egg nog ice cream, which Peter loves, and Catherine wanted chocolate. So I left the grocery store with a whole lot of frozen stuff to carry.

*****************

I got back in the car and we drove across the street to where the Food Bank stuff-a-bus was located. We saw the school bus and the big tent that's used to keep the volunteers warm all day.

But the tent was dark, and the refrigerated truck was gone.

We found someone cleaning up in the back. He said he thought the Food Bank event was the day before.

We hauled our frozen turkey back to the car.

*************************

I knew the guy wasn't right. Why would they hold a day-long food drive on a Friday when everyone is working? makes no sense. So when we got home, we fixed ice cream for the kids and then I looked up the Food Bank web site. Sure enough, the stuff-a-bus event was supposed to have been until 7:00, but they were all gone by 6:30.

I like being right, but now I had a turkey to deal with. I looked up the web site of the radio station that was sponsoring the stuff-a-bus event, and they, too, said the event would end at 7:00. Their site also said something like, "Everyone loves to drop off a couple of cans of corn, but to be honest, we'd rather have the cash. $5 will buy 17 meals."

I get that. But now I was annoyed at having a turkey on my hands, and doubly annoyed that they didn't seem to want it to begin with, and that they would have preferred that I just gave them cash.

We somehow managed to find room in the freezer for 28 pounds of turkey and three containers of ice cream.

And I still had to keep my promise to make pasta with Catherine. We mixed and kneaded the pasta, and while it rested for 20 minutes, I worked a little bit more on that article. Then she and I took turns cranking the pasta machine while we made spaghetti. I was exhausted when I finally went to bed. We all were.

We never did get to the leaves.

****************

Sunday, Isabel had to get up early -- much earlier than usual -- to go to church so she could be free all morning to help run the wreath-making workshop. As I got breakfast ready, I tried to figure out what to do with this turkey that nobody seemed to want. I looked again at the Food Bank website: there was another stuff-a-bus event about 40 minutes away. Plus, the Food Bank headquarters had special Sunday hours for the holiday, and would take the drop-off. That was only 30 minutes away.

After breakfast, the kids and I went to church, and then I took the kids to the wreath-making workshop. Peter was scheduled to help out (he needs the service hours as part of his National Junior Honor Society membership). So I made the wreath with John and Catherine, trying to keep John focused on what he was doing, and trying to get Catherine to stop begging me for money so she could buy just one more brownie at the bake sale. With the two of them distracted, our wreath looked a little like Charlie Brown's Christmas tree, but with a little more trimming and adding, it looked OK by the time we left.

We were done by about 11:00. I took the wreath and John and Catherine home while Isabel and Peter stayed to help at the workshop. On the way out, I saw the woman who runs our church's food basket drive for the holiday. I asked her if she needed a turkey. She said they don't do turkeys (too difficult to deliver -- they give grocery store gift cards along with non-perishable items) but that she thought the town's food bank was collecting food that day back at the same grocery store parking lot we were at the night before.

So I drove the kids to the grocery store, hoping I could avoid a long drive to give away The Turkey That Nobody Wanted. there was no sign of any food collection. So we went back home and I looked up the town food bank's website to see if maybe they were collecting at a different spot that day. But their web site had nothing about food drives, and neither did the local paper.

"OK kids," I said the John and Catherine. "We're driving to the Food Bank." They groaned.

As we were leaving to get back into the car (I decided we'd go for the 30 minute drive to the Food Bank headquarters instead of the 40 minute drive to the other stuff-a-bus event), my mom called. I hadn't spoken to her in a week, and I hated to cut her off, but I had to deliver The Turkey That I Couldn't Give Away Despite Four Attempts, and I wasn't sure if Isabel would need help when the wreath-making workshop was over at 1:30. Sorry, Mom.

**********************

The Food Bank website's directions weren't great, but they did at least acknowledge which streets didn't have signs, so I had to drive slowly and count traffic lights and hope I found the place OK. Which I did.

As I was driving, I started thinking, "What if they don't take turkeys?" I'd seen ads for a bunch of food drives over the weekend, but they were all for non-perishable items only. What if this was one of them? But then I convinced myself that they would take it. This was the Food Bank headquarters. This had to be the place where the turkey would have ended up anyway. Right?

When I finally handed off the Turkey That Nobody Wanted, I was kind of hoping the volunteer who took it would make a bigger deal about the donation. She did give me an enthusiastic "Thank You," but that was about it. I started to tell her about the stuff-a-bus event closing early, but decided I wouldn't bother. Probably not a whole lot she could do about it anyway. No sense in taking out my frustration on volunteers.

********************

Later that day, we raked leaves. Then we ate a homemade spaghetti dinner. With homemade sauce and homemade meatballs. Then I finished my article. And in the end, that turkey will go to a good home.

********************

This is my third Thanksgiving since I've been diagnosed, and the third time I've tried to take the time to think and write about what I'm thankful for. To be honest, I had a hard time with it this year. I have plenty to be thankful for, but I don't like rattling off the same things. Too easy. I like to put more thought into it for myself.

As I was driving home from the Food Bank headquarters after dropping off the turkey, I finally had a chance to take a deep breath. The kids were telling me that they were hungry and tired and would have preferred to not be in the car. I knew part of their crankiness was the "sugar high" from the bake sale wearing off, and I tried to patiently explain why it was important that we took time out of the day to deliver the turkey, and why we had to try a fifth time to give it away (and not just because we didn't have freezer space).

Which is when I knew what I'd write about for the Thanksgiving blog post.

**********************

I'm thankful that, despite having a cancer that's harder to get rid of than a Food Bank Turkey, I'm still a pretty healthy person -- healthy enough to run around like I did all weekend and still do a decent job teaching on Monday morning.

I'm thankful that I have a good job, one that's pretty secure, even at a time when our governor-elect is talking about state employees bracing themselves for cuts. I'm thankful that it's a job I love, one that lets me do things that I really enjoy and get some fulfillment from, like teaching on Monday mornings, or writing articles for journals whose editors e-mail at 6:00am on Saturday mornings to remind me to finish up the writing I promised I'd finish.

I'm thankful that I'm not one of those people who needs a turkey today. I'm thankful I have a minivan with a tank full of gas that lets me drive around to five different places to try to drop off that turkey, not to mention drive out to a greenhouse four towns over to pick up 80 pounds of evergreen tips.

I'm thankful that I have a brother and sister-in-law who care enough to send their daughter to a school like Quinnipiac, even when those QU students block the aisle at the grocery store debating which cheap beer to buy. I'm thankful I live someplace with a grocery store nearby, not a convenience store that would charge twice what I can pay now for stuff that I need.

I'm thankful for parents who call once a week when I'm too busy to call them, to see how I'm doing. I'm thankful they were probably also calling to ask what they could get the kids for Christmas.

I'm thankful for three healthy, beautiful children who jump in leaf piles and play with the dog and ask if we can make homemade pasta and are patient enough to keep asking when we're too busy to do it. I'm thankful that they are smart enough to be in National Junior Honor Societies and talented enough to be in bands.

I'm thankful for a wife that shows the kids that giving up a weekend to help others is a really good way to spend a weekend. And I'm thankful that when she and I have only about five minutes to spare over that weekend, she wants to spend it with me.

Happy Thanksgiving, everyone.

Tuesday, November 23, 2010

Helping Dad

Saw this video, and had to pass it along. It's a clip from a talk show, where the host describes a 911 call from a 5 year old girl, along with clips from the call.

The little girl's father was having chest pains and breathing problems, and tried to call 911, but couldn't. The little girl took over.

She's an amazing mix of what seems like a calm 16 year old, plus the 5 year old girl that she is.

The whole 911 call is here
if you want to hear it all, but you get the gist from the one above.

Such a funny, touching video just before Thanksgiving....

Saturday, November 20, 2010

More from Mukherjee

A couple of days ago, USA Today ran a piece on Dr. Siddhartha Mukherjee's book, The Emperor of All Maladies. The piece is called "We'll Learn to Live with Cancer, Suggests New Book," and it focuses on the history of cancer and its treatments. As the title suggests, Mukherjee believes that we may not cure all cancer, but we'll continue to get closer and closer. Ultimately, we'll have to look at cancer as a chronic disease, one that might not go away completely, but which we can control for a long time.

Which is, in some ways, how we're dealing with Follicular NHL. Newer treatments for all cancers are genetically-based, taking advantage of what we know about gene mutations and their effects on cancer. Follicular NHL is no different, and some treatments like Velcade seem to work for a while and then need to be repeated. Not ideal, but dealable, I guess.

This book is getting quite a bit of attention. NPR's show Fresh Air did a segment with the author earier this week. He's a pretty brilliant guy. Recommended listening.

Wednesday, November 17, 2010

Our Evil Twin

Slate Magazine has a review of a new book called The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee, an oncologist and researcher. The review is called "Is Cancer Our Evil, Smarter Twin? A New Metaphor May Tell us What We Need to Know about the Disease." The book itself seems like a pretty straightforward history of cancer and its treatments (from what I have read about it), though written in a very compelling way.

What I find interesting in the Slate review is the idea of the new metaphor for thinking about cancer. Metaphors are comparisons that we use to understand things that we don't always understand, and the implications of that comparison can influence how we feel about that thing we're trying to understand. So when I try to explain blogging to my students who have never blogged, I could say "Think of a blog as an online diary." That "diary" metaphor is one that will emphasize for them the personal aspects of a blog. But I could also say "Imagine a blog as an online party where one person tells a story and then a bunch of others add their own stories or comment about how much they loved (or were offended by) that story." Obviously, that choice of metaphor is going to get my students to understand blogs in a different way, and to react to blogs in a very different way.

And so it is with cancer. The word "cancer" comes from Latin, meaning "crab." That's why people born under the zodiac sign of cancer have a crab for their symbol. And using that metaphor for cancer -- something that grabs hold and causes pain -- says something about the way we think of cancer. Nobody thinks very happy thoughts about cancer, but if you extend that metaphor, then cancer becomes something that invades from outside. Think "Attack of the Crab Monsters" (a really horrible horror movie from 1957 that's so bad that it's awesome).

For researchers, that kind of metaphor has meant something important: a tumor is an outsider invader that needs to be counter-attacked with everything we've got. This is why chemo became so popular after World War II. Take no prisoners. Collateral damage to healthy cells is a sacrifice we have to make. The important thing is, we killed those invading crab monsters.

Mukherjee's metaphor for cancer is something very different than what we are used to: cancer, he says, is a "more perfect versions of ourselves."

Whoa. A more perfect version of ourselves? Cancer is perfection?

Well, yes. Think about it. Cancer cells aren't outside invaders; they are copies of our own cells. My B-cell lymphocytes didn't get injected or inhaled -- they are created in my own bone marrow. And they are perfect: they have managed to reprogram themselves so they don't die on their own. For a cell, what could be more perfect? Eternal life with limitless copies of yourself. (The narcissistic little bastards.....)

And that "perfect copy" metaphor has implications for researchers that are as important as the crab metaphor had for previous generations. Trying to kill the crab means killing ourselves -- along with that perfect version of ourselves. As brave and noble as that sacrifice might sound, it's kind of pointless. We need to find treatments that kill off the evil twin without killing ourselves as well.

Thinking of cancer in this new way leads researchers back to the genetic basis for lots of cancers, including follicular lymphoma: we need to find a way to make cancer cells imperfect.

And that's exactly what so many new, targeted treatments are trying to do. The Slate review mentions some treatments that involve ways of making the body's own immune system take on and defeat the cancer -- like the vaccines I've been reading so much about, or the monoclonal antibodies that induce self-death, or the Velcade-type treatments that make the cells forget to take out the garbage. That's the future of cancer research. And the new metaphor might be the thing that makes us patients think about cancer in new ways, too.

Sounds like a fascinating book. Kind of a weird Christmas request, but I'm putting it on my list anyway.....

Sunday, November 14, 2010

Bexxar Problems

I've written a lot about RadioImmunoTherapy (RIT), particularly one of the two types, Zevalin. I don't mean to ignore the other type of RIT, Bexxar, but there's been so much more news about Zevalin in the past few years that it's been easy to ignore Bexxar.

Which brings us to a problem: drug maker GlaxoSmithKline announced last week that it will severely cut back on its production of Bexxar, which will make it very difficult for some patients to get access to it.

This is not good. Bexxar and Zevalin work in similar ways, but they are pretty different -- different enough that losing Bexxar will create potential problems for lots of patients. For example, both types of RIT are essentially monoclonal antibodies with a bit of radiation attached to them, so when they bind to a specific protein on a lymphoma cell, the radiation can zap it. (Here are some other differences between Bexxar and Zevalin, courtesy of lymphomation.com)

Here's where the problem lies: Zevalin is basically radioactive Rituxan, currently the most commonly-used monoclonal antibody. But many patients who use Rituxan alone and as part of chemo can become resistant to Rituxan. So there's a chance that they will be resistant to Zevalin, too. Having another RIT option like Bexxar may save them (as it has saved many others) when Rituxan-containing treatments stop working.

Naturally, the NHL community is up in arms about this. GSK has every right to cut down or stop production if people aren't using Bexxar. However, GSK hasn't done a whole lot to market Bexxar, either, so NHLers are feeling a little betrayed. And they've become very vocal about this. For example, it didn't take too long to reach 1200 signatures on a petition to GSK to save Bexxar.

I think they're unlikely to change their minds. RIT, for all kinds of reasons I've discussed here in the past, just isn't widely used, despite its well-documented successes. I think what we can hope for is that GSK sells Bexxar to someone who's more willing to push it. That's exactly what's happened to Zevalin, and sales picked up as a result.

Keep your fingers and lymph nodes crossed....

Thursday, November 11, 2010

Another Ignite Video

A few weeks ago, I posted an Ignite video by Tom Music, a member of my online support group.

Here's another one from another member of the group, Tony Hines. It's called "How Lucky Underwear Helped Me Battle Lymphoma."

You may remember that Ignite presentations are 5 minutes long, and while the speaker is doing his or her thing, the big screen behind them changes the images every 15 seconds. Makes for a lively presentation.

In his presentation,Tony mentions statistics and how being hit by statistics when he was first diagnosed was a very bad thing for him. I was in the same position -- almost every time I've been saddened by my situation, it's because I've looked at -- and dwelt on -- statistics. I decided long ago to just avoid them. But it was actually an explanation to the support group from Tony (who also has Follicular NHL) that helped me to not just avoid statistics, but to actually step back and look at them with a clear mind -- clear enough to challenge them. I wrote about that a while back.

As a thank you to Tony, I'm going to plug his web page. It's got a really nice section called "The Lymphoma Files" with a diary describing his treatment. At the top of the page are links to his books (he's a novelist), plus his blog and podcasts.

Nice video. And really nice underwear.....

Monday, November 8, 2010

From Strudel

Okay, is me, ja?

I want to show you a video. Iss right here.

Is video from this year's Standard Schnauzer Club of America annual competition to find the best standard schnauzer in Amerika.

Thass hard, ja? So many great Schnauzers.

So on the wideo, they show the winner. His name is who cares.
But then at the 2:30 of the video, they show the "Best of Opposite Sex." The winner was a male, so this means they show the best female. This is the one you care. Iss Oakwood Steel Magnolia. She is my half-sister. Listen to her parents -- her dad is my dad too, Oakwood Von Ryan's Express.

She very pretty, no?

But she from that part of the family that iss not too bright, ja? When she comes for Thanksgiving, everyone take a deep breath, yu know wass I mean? Walks into walls, eats the plastic fruit from der cornucopia center piece, that kind of thing. Not the sharpest knife in the drawer, ja?

Still, we proud of her, even if -- how you say? Die Panade fällt ihr Schnitzel? She can't keep the breading on her schnitzel? You know what I mean. You have one those in your family, too. Everybody does.

Thanks for letting me write, Cancer Boy. Get back to your work.

Saturday, November 6, 2010

Snuggie Update

The Snuggie that my brother got for me last winter has gotten some excellent use. All through the winter and into the spring, it typically ended up stolen from me by one of the kids as they watched TV. We've already broken it out this year; it came in handy a few weeks ago when an (otherwise dignified) houseguest wore it during a chilly afternoon soccer game.

Of course, it had reached its apex when I wore it during my Rituxan treatments. The monoclonal antibody, you will recall, is made from mice genes, and in my Benadryl-induced haze had me fantasizing about my wife dressed up as Minnie Mouse.....


Well, now that it's Snuggie season again, I thought I'd give you a quick update on what's been happening in the world of Snuggies.

Apparently, the new trend in pub crawls (moving from bar to bar over the course of an evening) is the "Snuggie Pub Craw"l; this web site is devoted to the practice -- pictures, video, a schedule of upcoming events...very impressive.

According to the site, there was a Snuggie Pub Crawl in New Haven, sponsored by the Yale School of Medicine class of 2011. Which doesn't give me much hope for my medical future.

You will also find a large variety of Snuggie rip-offs in the world. Don't be fooled -- only the original Snuggie will keep you warm and cozy. Still, I have to admire those who go beyond the Snuggie, who can take that basic concept and make it into something special. Which is why I admire the Peekaru, a kind of fleece blanket that envelopes a baby being carried kangaroo-style by mom. Hard to describe, but it looks like this:



Isn't that awesome? When I was a baby, I was just cold all the time. And my poor kids didn't have it much better. I remember going to a Chicago Cubs game at Wrigley Field with Isabel and Peter, when Peter was only 11 months old. It was early April, and we had cheap seats, way up under the roof, out of the sun. Must have been 45 degrees. And Chicago-windy. Peter had lost his mittens somewhere along Michigan Avenue, so we put a little pair of socks on his hands and fed him his first hot dog while we all froze.

I'm just saying, a Peekaru would have been really nice back then.

Especially in leopard-print.

Wednesday, November 3, 2010

Video: Uncertainty

One more from Betsy de Parry's webcast series (which is now finished):

Dr. Michelle Riba on "Sustaining Hope. Coping with Uncertainty." Dr. Riba is a psychologist specializing in oncology. After you click the link, scroll down to the bottom of the page. Or better yet, stop and listen to the other weblinks first.

A lot of what Betsy and Dr. Riba discuss in this webcast has to do with post-treatment psychology -- how survivors deal with the changes in their lives, now that cancer is gone. And a big part of that has to do with the worry that the cancer will come back. It's a complex discussion on a complex issue; Dr. Riba doesn't offer any easy answers.

But she does offer lots of reasons for hope. And maybe, given my recent visit to Dr. R, that's a nice thing. I can see parallels between my own (and other fNHL patients') long-term uncertainty and other post-treatment lymphoma patients' uncertainty.

And, all things considered, I think I've dealt with the uncertainty pretty well over these past almost-three-years. I think I can deal with anything when I know what I'm dealing with, and that's why the visit with Dr. R was helpful. Now I know what to look for -- how he defines the line that will be crossed before he considers the next round of treatment.

Dr. Riba talks a lot about the challenges of moving on with our lives, and I'm happy to give that a try. It helps to be so dang busy with work and family.

Betsy isn't promising a third webcast series, but here's my vote that she continue. (Do you hear me, LRF?)

Monday, November 1, 2010

Movember

Oh, it's that time of year: Movember.

If you aren't aware, "Mo" is short for moustache, and November is the month dedicated to promoting men's health. So when you encourage men to grow moustaches for the month to promote men's health, you get Movember.

The Movember Foundation uses the month to ask men to grow a moustache. Instead a small ribbon on the lapel, this amounts to a man-made ribbon on the face. The foundation asks men to grow and donate (grownate?), and the money raised goes to the Prostate Cancer Foundation and Lance Armstrong's LiveStrong Foundation.

It's a good cause.

And it's probably easier to grow a mo than to, say, ride a bike for 180 miles....

(And if you're looking for inspiration, check out these bloggers' lists of the Best and Worst Moustaches in the Movies, The 20 greatest moustaches in sports, and Probably the 10 Best Moutaches EVER!)

Thursday, October 28, 2010

Walk On By

A few days ago, Sony announced that they were discontinuing production of the Sony Walkman.

My first reaction was the same as many peoples': They still make the Walkman? Not even, like, the Discman, which is pretty much obsolete now. But the cassette-playing Walkman?

Apparently so.

Many people mourn the loss. Like this writer. And I join them. Not because I still use a Walkman (though we have a cassette player in our 10 year old minivan that still gets plenty of use), but because of the memories I have of it.

*******************

I remember the summer before my senior year in high school, going on a church trip to Martha's Vineyard. The whole time on the island, I tried to spend time with a girl I liked and I got nowhere. My buddy Dan and I finally caught up with her in Oak Bluffs, along the busy main drag. He and the girl chatted away while laid down on the steps of an old movie theater a few feet away, sullen, my Walkman seemingly blaring away. Dan turned the conversation around to me, and why she wasn't interested. "Are you sure he can't hear?" she asked Dan, who said, "No, he can't hear," knowing full well that I could hear everything. Turned out she was coming off a bad break-up.

Months later, it turned out that not getting involved with her was a blessing.

Thank you, Walkman.

***************************

But what I remembered most was having my Walkman with me when I spent 10 months in Italy in college.

I was there for a semester, returned home for Christmas, and then went back, spending a month in Florence, taking classes all day at a language school to improve my Italian enough to survive taking an actual class at the University of Venice.

For that month, I lived with a family that I hardly ever saw, since they left the apartment early, and I came home late. One of the rare encounters I had with one of them came one night when I entered the dad's study. I thought he had heard me knock, but apparently he didn't, because I walked in only to catch him drinking whiskey directly from the decanter. He didn't offer me any, but did say, smiling, "Bush," referring to the then-current vice president and presidential candidate. That was pretty much the extent of our conversation over one month: Republican primary politics, captured in a single, whiskey-soaked word.

I'd wear my Walkman every morning after I left the apartment and walked along the River Arno to the Ponte Vecchio ("The Old Bridge"), where I'd cross the river, and walk a few more blocks to the language school. As I walked, I'd listen to tapes, a few brought from home, but most of them bought from bootleggers at flea markets in Rome and Bologna. The Smiths, INXS, David Bowie, Depeche Mode, Pink Floyd. All recorded and bought illegally.

But mostly, for some reason, I listened to Sting's Nothing Like the Sun. Somehow, for some reason, it gave me courage. Which I needed, partly because I spent too much time drinking to really learn much Italian, which made my language classes kind of tough, and partly because one of the other Americans attending this particular language school was the daughter of former Democratic vice presidential candidate Geraldine Ferraro. I wanted to ask her to have a gelato with me just so I could say I had "dated" her. But I never did work up the nerve.

***********************

So, Walkman, I'll miss you. For some reason, my memories of you are tied up with things like drinking alcohol, U.S. Vice Presidential candidates (from both parties), and girls who wouldn't go out with me.

I'll miss you anyway.

Monday, October 25, 2010

Nice Video

Here's a link to a video from Tom Music, who is a member of my online support group.

Tom was asked to make a presentation for something called Ignite. This is a particular type of presentation in which the presenter has 5 minutes to enlighten the audience. Accompanying the presenter's talk are slides on a screen; the slides advance automatically every 15 seconds. You have no choice but to stick to the topic.

Tom talks about learning that he had lymphoma. In fact, he had "double lymphoma" -- an indolent type that had transformed into an aggressive type before it was discovered and diagnosed. Not real common, but not unheard of, by any means. He describes his initial reaction, how chemo works, and what he learned from it all. It's fast, but you can tell that Tom has a great attitude about it all.

Tom also has a great blog called Lymphomartini, which takes you through everything that he went through. The double lymphoma caused some complications, and he does a nice job of describing his feelings, his treatments, and how he handled it.

Another example of a fighter. Love those.

Saturday, October 23, 2010

Cancer Humor

Finally, there's some new cancer humor out there. I had mined all of the available good stuff by about the 6th month after my diagnosis. Can't imagine why there isn't more cancer humor out there on the internet. You can find about 180 auto-tuned versions of "Charlie Bit Me," but it takes two years for someone to laugh at cancer? Not even a little radiation joke? Jeepers.

Anyway, comedian Sarah Silverman offers this video, which was featured in the Stand Up 2 Cancer special last month.

Good enough for a laugh.

Wednesday, October 20, 2010

Dr. R Visit

I had an unexpected visit with Dr. R today. I'll tell you the ending to the story right at the beginning: Everything's OK. But you can keep reading anyway.

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Monday morning, I noticed some swelling in my thigh. It was the same kind of swelling, in the same area, that I noticed last winter, and that prompted the need for treatment. Not nearly as severe as last winter, but the same kind of swelling. So I'm thinking maybe this is the beginning of the same thing -- internal nodes that are growing enough to block a lymph duct and cause a backup of lymphatic fluid, and that fluid backup leads to swelling in my thigh.

So I called Dr. R's office Monday morning to make an appointment. His secretary answered, recognized my name, and got to work finding me a time to come in. Nothing available Monday. Maybe something on Tuesday? 10:00? No, I have a meeting at 10:00. Already canceled three times. If I cancel again, my colleagues will kill me. Thursday at 1:30? Or maybe later? No, same problem. No meeting for me, but all Peter and Catherine have orthodontist appointments at 2:00, and all three kids have something going on later on Thursday -- basketball, dance, soccer.

The secretary was wonderful about trying to get me in as soon as possible. But I tried to explain that at this point, the swollen thigh, and making an appointment, was more of an inconvenience than a worry. I wasn't feeling so desperate that I needed to see the doctor RIGHT NOW; I just wanted to get in to see him at a time that it wasn't going to mess up too much of my very busy schedule. She laughed. And we decided that it's probably a better attitude, feeling inconvenienced, than feeling like I need to see the doctor immediately.

We settled on Wednesday at 11:15, which meant I had to cancel my 11:00 class.

Very inconvenient.

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Naturally, in the 48 hours until the appointment, I started looking at the next step. Will we just go for Rituxan again? The last time I saw Dr. R, he said he wouldn't rule out Rituxan completely. That would be nice, in some ways -- I know how tolerable this treatment is. But inconvenient: it would mean canceling my Friday class for four weeks. Maybe six or eight.

Maybe Dr. R will go for Treanda? This is actual chemo, but with a much better toxicity profile than, say, CVP or CHOP: rarely is there any hair loss, and while there's typically some nausea, my support group friends say it usually lasts for only a few days. But Treanda is given on a 21 day cycle, with infusions on day 1 and 2, then nothing again until the second round, day 22 and 23. This can go on for up to 8 rounds. That's 24 weeks -- six months. That makes it slightly less inconvenient than Rituxan: I'd only have to cancel two or three classes for the rest of the semester, and maybe some at the beginning of next semester. But that doesn't account for the potential nausea or other side effects, which could make things unpleasant for a few more days each cycle....

Inconvenient, inconvenient.

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The visit is kind of anti-climactic: When I got to Dr. R's office, it turned out he didn't even ask for blood tests. When I made the appointment, I told the secretary that I wasn't in any pain, and the swelling wasn't interfering with anything (and really isn't all that noticeable if you aren't looking for it). So after his physical examination, Dr. R said, "I'm really not that impressed," which is a funny expression he uses a lot. He means it in the literal sense of "This isn't leaving an impression on me," not the more typical meaning of something like, "Swelling? You call that swelling? Come back when you have some real swelling."

But, actually, that's pretty much what he said. Compared to the swelling I had in the winter, this is nothing. My thinking was, it's not exactly nothing, it's the start of something, so let's get to it before it becomes something else.

But he wasn't convinced that it really is something. Or that, if it is something, it isn't something we need to worry about just yet. I changed my workout routine recently -- maybe that's it, some swelling from a muscle pull. Or maybe it is related to the lymphoma, but the level of swelling I have right now is actually about where it was when I finished my Rituxan last winter, so it's where we would hope to be at the end of treatment, not the beginning, so why start treatment?

I understand his thinking. He's always had the philosophy that with an indolent lymphoma, we don't treat until we absolutely need to. And right now, we just don't need to. Maybe this is nothing. Or maybe it's the start of something. But it definitely isn't at the point where it needs to be treated. In fact, I have an appointment that was already scheduled for December. He said if I wanted to, I could even move that back a while, since I've seen him now, and won't need to for another three months. Which is good, when you think about it. He's not worried. But I'm keeping the appointment anyway.

I get his thinking, and, I guess, I agree. But now it's just more watching and waiting, and that sucks.

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Dr. R said he was sorry he couldn't give me anything more definite. I told him it's been almost three years of the same, and I'm kind of used to it.

On the way home, Isabel told me she's more worried about how I'm doing mentally than physically. My blood pressure was up today. I was feeling a a little of that stress dizziness this morning. But I think I'm OK. It helps to know the doctor is not too worried.

I asked Isabel how she was doing with all of this. She told me (English teacher that she is) that she wishes we could just settle on a story:

When we first got the diagnosis, she said, the story was about Fighting This Thing and Beating It. That's a pretty common story for a cancer patient.

And then, that wasn't the story anymore. Within a few days, we decided on watching and waiting. So the story became Living Our Lives as Normally as We Could And Trying Not to Worry.

Then that changed last winter. The story became Let's Push This Thing Back, which is different from Let's Beat This Thing, because we know it's not going to be beaten, not with Rituxan.

And now the story is changing again. It's back to Let's Keep an Eye on This Thing.

People who read books, said Isabel, get used to the comfort that a good final chapter brings. The characters and the plot and the conflict that were introduced in chapter 1 get all wrapped up in the final chapter.

But this book doesn't have an ending. Worse than that, the story keeps getting changed in the middle of the book. It's not a sad story, and that's good. But none of the stories seem to have an ending. That's not as good.

***************

And so we go back to the book, and figure out which story we're going to tell ourselves this time.

We'll deal. We always do.

(And I'm feeling fine.)

Monday, October 18, 2010

NHL

The National Hockey League has teamed up with the Leukemia and Lymphoma Society on a campaign called "Hockey Fights Cancer."

Of course, the campaign is geared toward Leukemia, the most common childhood cancer. And I certainly wouldn't begrudge anyone doing research on kids with cancer. But, gosh, how could they resist hooking up with lymphoma, especially on the Non-Hodgkins end of things?

NHL/NHL?

I couldn't have resisted....

Thursday, October 14, 2010

Open letters

More from Betsy de Parry.

Betsy has a column that appears in the online version of the Ann Arbor newspaper. She's replaying her experiences as a cancer patient, which she originally published in her book The Rollercoaster Chronicles.

Last week, she wrote "An Open Letter to Oncologists Everywhere." It sums up what most cancer patients think and feel about their oncologists -- that we want to trust them, but we need some assurances. For many of us -- maybe most, maybe all -- this is the single person we're trusting with our lives. For some, that trust is more desperate. For others (like me) that trust is still important, but we have the luxury of a little more time to build that trust.

Here's Betsy's letter (the original appears here):


Dear Doctor,
Here we are, you and me, our lives connected by cancer. My cancer. Under the circumstances, I’m really glad to have you in my life, and I want our relationship to be very, very long and very, very good, but since I can’t find a manual on how to build our relationship, I’m guessing that, like any good one, it has to start with trust.
But trust takes time, which we don’t have, so I have some things to ask and say.
First, just what am I trusting in you? That you’re brilliant, cool under pressure, experienced, knowledgable and up-to-date on the latest miracles of modern science for my type of cancer? That you won’t be too proud to call in colleagues or send me to them if you get stumped or run out of ideas? That you’ll always be honest with me no matter how hard it is for you or me? That you’ll help me set realistic expectations without ever stealing my hope? That you’ll be my strength if I’m too weak to be strong? That you won’t give up on me if the going gets rough and it looks like I won’t be one of your success stories?
Do you understand that it’s hard enough to put my trust in you, but even harder to put blind faith in the people I can’t see but on whom you rely? Like the pathologists who look at tiny pieces of me or the radiologists who interpret pictures of my innards. You may know their credentials, but I don't.
I get that you went to medical school to learn how to identify and treat disease, not to listen to me blather on about how cancer is more than a physical problem. That it’s really personal. That it sweeps us patients and our families into a tempest of confusion, fear, frustration, vulnerability and isolation from the healthy world. I’ll try very hard to check those emotions at the door when you and I visit, but if they creep into the examining room, is it too much to ask you to recognize that I’m not just a collection of cells that needs to be fixed while you work to fix my wayward cells?And Doc, surely you know that your sophisticated equipment can’t see the parts of me that make me who I am. And I am not my cancer. No machine can identify the parts that make me love and laugh. And none can calculate how very afraid I am. Of what lies ahead. Of dying. Of pain. Of medical procedures. And of becoming a number in a bureaucracy where no one will care whether I end up running a marathon or being turned over in a bed like a piece of meat on a rotisserie. Could you occasionally share my fear and shore up my hope?
Doc, I’ve tried to put myself in your shoes, but I can’t imagine how, day in and day out, you see humanity at its weakest and still find the strength to help us. I’m just glad that you can. And I know I need much more from you than you need from me, but I’ll do anything to help you help me, if only you can squeeze out a little time to teach me how to be a good cancer patient in addition to everything else that I ask of you.
Neither you nor I can predict the future, Doc, and I don’t expect you to do more than is humanly possible. But may I trust you to treat my future as if it were your very own?

Respectfully,Your Patient

A few days later, Betsy got a response. Here's Betsy's introduction, followed by the letter from a local oncologist/cancer researcher (again, the original appears here):


Dear Readers: In response to my letter to cancer doctors last Tuesday, Dr. Gary Hammer, world-renowned adrenal cancer specialist at the University of Michigan Comprehensive Cancer Center, wrote this very beautiful and moving letter to cancer patients everywhere. Dr. Hammer expresses what those of us who are lucky enough to have doctors like him know: that by sharing our illnesses — no doubt surrendering their own comfort to do so — the physician's healing power transcends the science of medicine to help us heal in ways that no medicine ever could. I am deeply grateful to Dr. Hammer for giving us this rare view of the doctor/patient relationship and honored to share it with you.
Betsy


Dear Patient,
You have asked questions about the unique aspects of the doctor-patient relationship. I will attempt to answer them as well as share my perspective on illness.
Life is indeed defined by relationships — feeling understood and feeling connected in our relations is trust.
You ask what you are trusting in me. Trust is earned. It is fair for all of us seeking care to expect competence, it is fair to seek excellence, it is fair to want the best. It is right to demand respect. It is right to demand honesty.
You ask that I not be too proud to call in colleagues if I run out of ideas. The Hippocratic Oath, a verbal decree by doctors to honor and respect human life, speaks to integrity. "Do No Harm." My interpretation of this most powerful phrase is that we must not be wrapped in solitary ego and hence filled with the imposter syndrome, afraid of being found out that we are fallible, imperfect and not all-knowing, afraid of what we don't know. A good doctor knows what he or she doesn't know, is not afraid of that fact and discloses it humbly. Owning our limitations is freeing and honors our shared humanity. Consulting with colleagues and other specialists who know more than me about a particular situation is absolutely essential and happens every day.
You ask if I will be honest with you without stealing your hope. Honesty and hope, at times, seem to be mutually exclusive reflections of imminent death versus certain cure. Rather, they are our forever present and forever fluid experience of our life with illness. I will honor both.
You ask if I'll give up on you if the going gets rough. A person doesn't "give up" on another person. While I might give up on a given therapeutic approach, I will never give up on you as a person. I will fight alongside you. I will surrender alongside you, but you — and only you — can decide if, when and how to engage your life, your experience of illness and ultimately your death.
You wonder how to trust members of my team whom you will never meet. The only way that you can feel confident in this dance is to trust me and our team. And it is a team. I promise to hold your best interest in the fore and to represent you to the team. Know that while I cannot formally speak for others, I will demand the very best from those I consult, from those on our team, from those we together entrust with your care.
You ask if I will treat you as more than a collection of cells that needs to be fixed. I reject the concept that doctors must disengage to provide "objective care." What does it mean to be objective anyway — cold, impersonal A+B=C? What good is that? On the contrary, conscious and emotional engagement not only facilitates healing and/or acceptance in the ill, it opens a space in the caregiver as well. In that vulnerable space where spirit mingles, life is transformed for the suffering, and life is transformed for those who bear witness.
You ask me to share your fear and you wonder how I do what I do every day. Perhaps the most frightening words a person might hear in his or her lifetime are "You have cancer." This truth revealed fractures our reality. It challenges our relationship to our inner world, forcing us to re-evaluate who we are.
However, embedded within this experience lived is a gift. The little-known secret is that the gift is not just for the afflicted but also for their entire circle of relationships, including spouse, children, friend and caregiver alike. The only requirements to receive this unique communion: vulnerability and presence.
As a physician engaged in the care of people with a particular rare cancer - where those under my care almost always die — I am thankful for the sharing of truths that have been unveiled to me by these men and women in this, their most vulnerable and internal sanctuary.
In this place of finding themselves dying, brave people have let me into their space where three truths seem to be unveiled again and again as defining gifts of sacredness. These truths can be embraced as three reflections of the word "presence:" conscious engagement, the experience of present time (the razor-sharp now) and the gift of emotional authenticity.Through these patients, I have come to an understanding that if we are fortunate to actually have time while we are ill, and we are brave enough, what happens as our vanity, our beauty and ultimately our physical identity is stripped away is that we are granted a chance to become our own sacredness — as it becomes all that is left.
Sadly, when people die suddenly, they rarely have the luxury of such time, such a place. But equally as tragic is that most folks never risk to venture to this vulnerable place while living when they do have time. Having our own death close by in life — be it through illness or conscious reflection — sharpens our internal lens by stripping away all that is not present, all that is not presence.
I thank these lovely people for helping me begin to see. It is indeed my experience with deeply reflective and engaged people suffering with cancer that is becoming, for me, a touchstone for such conscious intent.
While the unique bond between a doctor and a patient has often been described as a polarized relationship of doctor gives and patient takes, doctor talks and patient listens or patient questions and doctor answers — this is just silly. Trusting comes when both feel the presence of the other — and hence know the truth of the other.
Finally, you ask if I will treat your future as if it were my very own. Such is the truth of shared experience. I hear you and I see you.
My very best regards to you in this difficult time,
Your Doctor


Gary Hammer, MD, PhD, is director of the Endocrine Oncology Program, within which are the Multidisciplinary Thyroid and Adrenal Cancer Clinics, at the University of Michigan Comprehensive Cancer Center. Hammer holds the Millie Schembechler Professorship in Adrenal Cancer. He is also the director of the University's Center for Organogenesis.

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Dr. Hammer does a nice job, doesn't he? I feel lucky to have a doctor in whom I trust, who seems to care about me as a person (we always spend the first 5-10 minutes of the appointment chatting about kids, baseball, living in Boston, whatever), and who has actually used the words "do no harm" in describing his approach to treating me.

Lucky indeed. Thanks Betsy and Dr. Hammer for an exchange that sums things up so well.

Monday, October 11, 2010

Web Interview

I mentioned this a few weeks ago: Betsy de Parry, author and lymphoma advocate, is back with round two of interviews with lymphoma specialists. Last week, she posted her interview with Dr. Rebecca Elstrom from Cornell, who discussed Indolent Lymphomas (including Follicular NHL).

The webcast lasts about an hour, and its as good an introduction to the current state of indolent lymphomas as you'll find online. Very update, very thorough.

Betsy has a strong interest (to put it mildly) in RadioImmunoTherapy (in fact, this week's webcast will deal with that topic), and it was nice to hear a few minutes devoted to that subject in the Indolent Lymphomas webcast. I'm looking forward to hearing a full hour on RIT later this week.

Well done, Betsy. Keep up the good work.

Wednesday, October 6, 2010

Post #400

Wow. Hard to believe this is my 400th posting to Lympho Bob.

Sorry it's taken so long to write something since my last post. Ironically, I'm getting behind in keeping up with this blog because of...another blog.

This semester, I'm teaching a course called "Social Media and Professional Writing," where I'm teaching a bunch of English majors all about the ways writing is changing because of blogs, social networks like Facebook, Twitter, YouTube, and other interactive websites. It's been incredibly fascinating to teach.

And incredibly time-consuming, too: plans that I had made for the course in June are evaporating because all of this technology changes so quickly. In fact, I sat down two hours ago to work more on this post (which I had started last Friday), but got an alert that Facebook had made a major change to their "Groups" function. That change wiped out the plans I had made for how students will use a wiki for their collaborative report in a few weeks, and so I needed to watch a video on how the new Facebook Docs feature works so I can introduce it to the class on Friday, and then I had to post the video to my class blog and invite comments from my students......

Oy. It's been like that all semester. Sometimes I am literally learning about stuff 5 minutes before I teach it to them. It's a very different way of doing things for me. But like I said, it's been a lot of fun.

And it all started with this blog, 399 posts ago.

When I was diagnosed, I knew what blogs were, sort of, but I had never created one before. But I had one ready to go, and had posted a few times, before we even told the kids about the lymphoma diagnosis. I've been looking back at those early posts. It was very different then. They were much longer, more emotional, more personal. Mor desperate.

And over time, things changed. I got less fearful, and so did the people reading. The posts became less about me, and more about the good research I was reading, and about the good things the kids were doing. Comments tailed off some.

Which is fine. The blog still serves as a way to let people know what's going on for me. and every now and then it gives me a chance to unload about something important and emotional.

But writing a blog also opened up a whole new world for me professionally. I started the blog in January 2008. The following June, I went to a conference and learned a lot more about blogs and other social media and how they are written. By September, I was applying for a sabbatical to do my own research all of that stuff. A year later, I was deep into that research. And now, in February, less than a month after I celebrate my 3rd cancerversary, I will be presenting at a conference on writing, to scholars from 12 different countries, on what I've learned. A whole new professional world has opened up, and I've been re-energized by it all.

And what's really great about all of that? It's gotten me thinking excitedly about what I'm going to be teaching and researching for the next 25 years or so.

And that's the good part, becaue it wasn't too long after I started this blog that I was wondering just how long I was going to be around. I think now that it's going to be a long time.

So, pleaese be patient with me and the blog. I know I've said I'm going to be better about keeping it up. In the past, you might have started to get worried when I didn't post for four or five days, thinking maybe I was sick. Now, you should flip that worry around, and remember that when I don't post for a while, it's because I'm focusing on the next 25 years or so.

There will be plenty of time to post between now and 2035....