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....