Non-Hodgkins in the News

A hopeful story in the news Monday about Non-Hodgkins.



Survival rates for NHL patients have increased fairly dramatically over the last ten years, with 5- and 10-year survival rates on the rise. The numbers are especially good for patients under 45 years old.



The rise is being credited mainly to a drug called Rituxin, which was the first one developed that uses antibodies to attack tumors directly. It is sometimes used by itself as an early treatment, though most often used with chemotherapy (for fNHL, the standard chemo mix is called CHOP-R, each letter representing a different chemo drug; the "R" is "Rituxin), often with "R-Main," Rituxin Maintenance -- infusions every four to six months after chemo is finished.

Rituxin works because it finds and attaches itself to specfic "markers" on the surface of cells. The marker os called CD20. Rituxin knows to target only "B cells," the types that gets infected in certain NHLs, including mine. It won't attack plasma cells or stem cells. Once it attaches, it triggers mechanisms that target this same B cell in other places.

Rituxin hasn't been around long enough to say it's the absolute cure for fNHL, but it's showing some great results. The news story has an image of Rituxin attacking a B cell:

Beautiful, isn't it?

Of course, I have to give the usual "Don't get too excited" warnings: first, the study looks at all NHLs, not just Follicular; and second, if it was an absolute miracle cure, we'd all have been given it by now.

Still, to end on a happy note: Follicular survival numbers are even better than the averages numbers presented in the article, which include more aggressive NHLs, in part due to its receptivity to Rituxin.

Rituxin is likely to be a part of my future.

A Special Letter

First of all, I can't believe none of you know Mr. T's real name. Where were you all for the 80's? Engaging in behaviors that Mr. T would disapprove of, no doubt. I pity the fool who wastes his time breakdancing and experimenting with mind altering substances!

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Peter, John, and Catherine got a very special letter on Saturday. It came from Terry Francona, the manager of the Red Sox. It's not a form letter, that's for sure (unless the Sox now have some kind of weird "sorry your dad has cancer" form letter that they use a lot), and the signature is real.

Here's the letter:

Sorry for the small print; this was the best I could do with the scanner.

We don't know who contacted the Sox, but we're pretty sure it was Ken Casey from Dropkick Murphys, since they're the "house band" of the Red Sox. I asked cousin Christine if she could confirm that, and thank Ken for us, but they're on tour right now, so she can't get in touch with him.

Everyone out there has been incredibly generous. We appreciate your time, your good wishes, and the gifts -- small and very large -- that you've given us. They mean a lot, and I've been trying to thank everyone privately and publicly (on the blog), so if I've missed a thank you, I'm sorry. But know that we're aware of how blessed we are to have such great support. It makes us feel good knowing that you've been there for us when things haven't really been too rough yet. We know you'll be there when things do get difficult, when the Lymphoma progresses and the treatment starts up (whenever that will be).

Thanks again to everyone.

New Feature

Today, I am debuting a new feature for the blog, "Nodes of Gold: Famous People with Lymphoma." For the feature, I will profile a famous person who has or had Lymphoma, so as to educate you all about how widespread the disease is. I'm going with Lymphoma in general, including all types, and not just NHL, as a goodwill gesture toward those who have Hodgkins Lymphoma, and who generally think they're better than those of us with Non-Hodgkins, since they came first and define who we are by what we don't have. (They call us "Leftovers.)

So, first in the series: Mr. T.

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Nodes of Gold #1: Mr. T

Mr. T is an actor, two-time winner of the America's Toughest Bouncer competition, and one-time professional wrestler.

He is best known for playing Clubber Lang in Rocky III (that's two Rocky III references in a matter of days!), and B. A. (Bad Attitude) Baracus on The A Team. Born in Chicago in 1952, he is the 11th of 12 children. His brothers encouraged him to "get big" as a way of surviving his tough neighborhood, and he eventually became a bodyguard for Muhammed Ali, Steve McQueen, and Diana Ross, among others.

His big- and small-screen success led to his becoming a national phenomenon, and he eventually had his own comic book, TV cartoon, and cereal, as well as as his own Shrinky Dink set, which is perhaps his greatest accomplishment.

His tag line, "I pity the fool!," struck fear into the hearts of millions, terrified that they had done something pitiable to Mr. T. He was an outspoken opponent of drug use (sorry, you medical marijuana fans), alcohol (sorry, most of you on both sides of the family, and most of my friends), and just plain being a fool.

In 1995, Mr. T was diagnosed with T-cell Lymphoma. Naturally, he's Mr. T, so it was T-cell and not B-cell, and he pities the fool who has B-cell, which means me. Actually, T-cell is much more aggressive than B-cell, but with treatment appropriately aggressive for Mr. T, he beat the disease in 2001, and is now in complete remission.

After Hurricane Katrina, Mr. T gave up his trademark gold chains. He recently appeared in a Snickers commercial in Great Britain.

Also, he's good to his Mom, and thinks you should be good to yours, too.

Congratulations, Mr. T! You've got Nodes of Gold!

(Be sure to click those links, especially the last two, which are just incredible.)

More Cancer Humor....

....though I'm kind of tip-toeing with this, because my "Irish Guy With Cancer" joke didn't get much response.


Visiting a Lymphoma site, I came across a link for cancer humor, and that led me to a bunch of other sites, so I thought I'd share. I know cancer humor isn't everyone's cup of tea (or everyone's bag of chemo treatment), so I'm only posting the less-offensive stuff; you can click on the links and dig around a little to see the other stuff. (Hint: it's the kind of stuff that, say, 12-year old boys would find funny if they found colorectal cancer to be funny.)

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Here is a Washington Post article from 2006, "Humor, Rhymes with Tumor". It focuses primarily on one cartoonist (see below), but it does talk about cancer and humor in general.

That cartoonist is Miriam Engleburg, whose comic strips are called Cancer Made Me a Shallower Person. Here's a sample. She has a bunch of non-cancer-related strips, too, mostly dealing with parenthood. One is about marijuana, which you all seem to enjoy talking about, so here's the link to a sample called Toddler or Stoner?.


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Another nice site is GotCancer.org (the name plays on the whole "Got Milk?" thing). Their motto is "Your online source for unique cancer shirts, hats and more!"


This is where you'll find a great selection of colorectal and testicular cancer t-shirts with amusing puns. Of the non-rude shirts (click the link to see the rude ones for yourself), I like:

"Think Positive, Be Negative (It's a Cancer Thing)" and


"My Oncologist is Better than Your Oncologist."


But this one is my favorite. What NHL guy could think otherwise?

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A quick, clean joke:


Q. How many cancer patients does it take to screw in a light bulb?
A. Just one, but it takes a support group to cheer him on.


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Finally, you might enjoy Buck Cash's Cancer Island. Among other things, he has a series of cancer-related comics called "Toomers" (click on the "toons" link). Some are fairly intense chemo-related topics. Here are two that are OK to post -- only mildly offensive, especially compared to the Irish Cancer joke:

I really want to do this with my oncologist.

(Kind of self-explanatory.)

88 keys and a 5k

First off, a couple of thank-you's:

1) To Mike, Karen, Nicole, and Emily: Thanks for the article about Jon Lester. He's the Red Sox pitcher who had a type of NHL (different that mine), was treated, and came back a year later to win game 4 of the World Series last fall. The Boston Globe still has it archived in case you'd like to read it.

2) To Cindy, my colleague at Southern, for her icon suggestion. She sent a photo of James Brown and suggested that I could use that for those "I feel good" days. Since I anticipate feeling good (and using that same icon) for a while, I'm using it as my official profile photo. Look to the right and you'll see it. Click on the link to view the profile, and then on the audio clip option, and you'll hear Mr. Brown singing the song with that lyric ("I Got You").

This buys me some time to come up with other great soul songs to describe how I'm feeling. "Ain't No Way" when I'm feeling down? "Kung Fu Fighting" when I'm gearing up for a treatment? I'm sure my brother will offer some selections from his personal collection.

Thanks again Cindy. You won the contest.

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Back to our busy weekend. Saturday afternoon, the kids performed in the Connecticut Young Musicians Festival, a two weekend event held at Fairfield University. There are actually a bunch of festival events for different instruments all over the state, but piano is held at Fairfield.

The Festival is a judged, non-competitive event. Students are placed by their piano teachers at a certain level of achievement, and then play one required price and one optional piece. They are given scores from 1-5 by two judges. Each kid is in a group of roughly ten kids, so they're playing in a room with the two judges, plus the other kids in their group and all their families -- an audience of 25-30 people. It's non-competitive because they aren't given scores in relation to one another, only on their own performance (so everyone in the room could earn a 5).

It's a great thing. There's a little less pressure, given that they are only competing against themsleves, but it still gives them a chance to be in front of an audience and have that valuable experience. (Not that our kids are exactly shy, as most of you know.)

Catherine was scheduled to play from 2-3, and the boys were both in the same group (though at different levels) from 3:15-4:15. Unfortunately, we had some snow the night before, and while we along the coast were fine, the northern part of the state got hit harder. Apparently, not all of the judges were able to make it yet when they started at 9:00am, so they moved everything back an hour. Nobody knew that until we arrived, so we had an hour and a half to kill before Catherine started, having arrived at about 1:20.

The kids performed in one of Fairfield's classroom buildings, so we went up to the third floor and found an empty classroom and let the kids draw on the chalk board for an hour. (Leave it to the teachers to know that kids love chalkboards -- I think there's something "forbidden" in writing on the board, and that makes it more exciting.) This is some of their artwork:

Peter's picture of me as a Jedi Knight. (I'm saying "Duh.")

John's picture of me as a Sith Lord. Note the double-sided light saber. I'm also saying "Duh" in this one.

Catherine's picture of Princess Leia. It isn't of me, and I'm not saying "Duh," so I'm kind of happy about that.

Anyway, they eventually performed their pieces. They did well. This was Caterine's first time, and she didn't seem terribly nervous. John was performing for the second year, and he also did well. Peter's was his third performance, and he had by far the most challenging pieces to play in his group. He's a perfectionist, and he let a little early stumble throw him, but after watching himself on video, he realized he did a lot better than he thought. I agree.

We're working on getting some video up online for everyone (new camera, so we're learning how to do all of that). In the meantime, here are some pictures of the kids performing. Sorry, I haven't had a chance to edit them, so they're a little dark, and there's some punk's hat in the way of Catherine's picture:

Video soon, I promise.

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On Sunday morning, I ran the WPLR ShamRock and Roll 5k in downtown New Haven. This is a large race, about 1000 people every year. I met up with Andrew (you remember him from the East Rock 5k last month) and Ilene, another friend from work. Ilene and I knew Andrew was going to take off fast and beat us badly, so we didn't even bother to line up with him. Instead, Ilene and I agreed to run a fairly easy race -- we were shooting for about 10 minute miles. We knew with that having so many people at the start meant we'd be crowded in for the first five minutes and not be able to pass anyone anyway. Plus, we knew the course had some hills, and with the nice temperatures the day before, there would be some icy patches in the 25 degree chill of the morning.

I ended up finishing in 30 minutes, 31 seconds, a 9:50 per mile pace, just about what Ilene and I had agreed to run. Not my best, but I wasn't setting out for a PR, either, not like in East Rock. (For that race a month ago, my diagnosis was still pretty fresh, and I was running with pentcostal fire. Now I'm stable and on watch and wait, so this one was running with zen buddhism. Or something like that.)

I finished 586 out of 909 overall, 118 out of 136 in my age group (40-49). I'll take it. Here are the official results if you care to see them.

Mom and Dad were here for the weekend to see the kids perform, so it was nice that they got to see me race for the first time. The family all parked themselves on a hill about halfway into the race, so they saw me pass by twice. Here's a picture, as I went to the side of the road to get high fives from all of my fans:

I'm wearing my red "Relentless" shirt. Told you I looked darn good, didn't I?

Dropkick Murphys

Where to begin with describing this busy weekend?

I guess we'll start with Friday night -- that's when we got the pakage from Ken Casey, lead singer for Dropkick Murphys, one of Peter's favorite bands. If you aren't familiar with them, they're Punk Irish band from Boston. Think guitar and drums, plus bagpipes and penny whistle. They're probably now best known for having their songs in The Departed, which won the Oscar for Best Picture last year. If you haven't seen it, it's all about Boston Irish cops and Boston Irish mobsters. One of the songs from the film is "Shipping Up to Boston," one of Peter's favorites (and mine, I'll admit. Good running song.)

They also have a big connection to the Red Sox. They sing a song called "Tessie," which is a very old tune about a woman who loves the Sox. They rode in the Sox Workd Series victory parade this year, with Jon Papelbon, the Sox closer, jigging along with the band. Personally, I like "Wicked Sensitive Crew," which features the lyrics "In Pittsburgh they called us closed minded/but we know that's simply not true./Yeah, we're touchy, feely, sensitive guys/I ain't ashamed I cried when Mickey died in Rocky 2!" (Yes, it was Rocky 3, but that doesn't rhyme.) Plus, I like some other songs with titles I can't print in the blog.

So that's the band.

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We knew we were going to this Irish party on Saturday, so ISabel and I looked for fun t-shirts for the kids. I saw a Dropkick t-shirt at a Bob's Store that I wanted to get for Peter (it says BOSTON IRISH on the front), but they didn't have his size. I called my Mom to see if they might have one at the store near her. She called back to tell me that my dear cuginita (little cousin) Christine was friends with the lead singer. Mom remembered his last name was Casey. "Kenny Casey?" I said. "I used to play baseball with him." He grew up in Milton, and he was a neighborhood kid, so we'd play pick-up baseball, or football, or basketball sometimes. I'd hardly call him a close friend, but I certainly remembered him. (He has the same face 30 years later.)

After I talked to Mom, I told Peter that I knew Ken Casey, and he about fainted. (He gets a little star-struck at times.) In the meantime, Mom told me that she had contacted Christine and hold Christione that Peter was such a big fan, so Christine called Ken Casey. Apparently, they knew each other well as teenagers, and have kept in touch. (Still not sure about the details of their relationship. Christine -- could you explain?)

Ken sent a package to out to us immediately: an autographed picture, two shirts, and a bunch of stickers. Here are Peter and John wearing the shirts at the St. Patrick's party Saturday:

Yesterday, we wrote to Christine to thank her, and asked if it would be OK to e-mail Ken Casey directly to thank him. She asked Ken if it was OK, and he agreed ("Anything for you," is what I think Christine said that Ken told her. Seriously, Christine, can you explain this relationship?). So Peter e-mailed him last night to say thanks. He wrote about two sentences, and I asked if that was all he wanted to say. "I don't know what else to say!" Peter told me, all nervous. "I've never written to someone who's world-famous before!" (Peter knows Dropkick is off to tour Europe in a few weeks -- thus, "world famous.")

So, thank you my dear cousin. You made Peter's week -- maybe his month. He'll be bragging about this at school for the rest of the year.


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We had a good time at the St. Patrick's Day party (two weeks early, but that's what you need to do if you want to book an Irish DJ, apparently). Catherine especially enjoyed herself. She didn't stop moving the whole night. When slow songs came on, she danced ballet. When fast songs came on, she dragged someone out to the dance floor (usually me) or just ran around in circles. Here are some pictures:

John getting down, doing the Macarena:

Catherine dancing with some friends:

Peter doing the Chicken Dance. Instead of the clapping part, he makes armpit noises:

And yes, he really did write a piece called "Concerto for Saxophone and Armpit." But every time he tried to play what he'd composed so far (with himself on sax and his brother on armpit), John would laugh too hard to make it work, so he abandoned the project.

Discussing music makes as good a transition as any. Next entry: the kids perform at the Connectocut Young Musicians Festival, and Dad runs a 5k.

Busy Weekend

Not even halfway through the day, and we're exhausted. It's been a busy weekend, with Mom and Dad visiting and participating in lots of fun events.

Saturday afternoon, all three kids performed in the Connecticut Young Musicians Festival.

Saturday night, we all went to a St. Patrick's Day party at St. Rita's. Peter and John wore their new Dropkick Murphy's shirts, sent to them by band's the lead singer, Ken Casey, at the request of Cousin Christine, an old friend of Ken's.

This morning, I ran another race, the WPLR ShamRock and Roll 5k.

Peter's going to be on the computer all afternoon finishing a school project, so I'll post pictures and details of all of the events later today, or tomorrow sometime.

I'm still relentless, and I still look darn good in running clothes.