Nodes of Gold #3

Today: a very special edition of Nodes of Gold, our ongoing feature that chronicles the lives of famous people who have been diagnosed with Lymphoma.

In this edition: Athletes with Lymphoma. We'll say it's in honor of Jon Lester. Just in case you missed it, here's the last out of his no hitter, and the celebration afterwards. (Click the link, or see below.) It was taken by a fan sitting behind home plate. Very cool to see, but the official game video was better, especially the hug that his manager, Terry Francona, gave him. (You may recall that I have a personal letter from Mr. Francona.) Unfortunately, Major League Baseball won't make the official video readily available anymore, so we'll have to go with this one.

I'm playing with embedded videos now, not just giving links to other sites. I think it adds something. But I'll keep the links in until I know the embedding is working for everyone. Let me know. Here's the embedded Lester video:




As awesome as he is, Lester isn't the only athlete to come back from Lymphoma and play again at his chosen sport, though he's arguably the one who has had the most success upon his return, even in his very short career.

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Mario Lemieux is perhaps one of the greatest hockey players of all time, and has the second coolest French name of any professional hockey player, after Guy LaFleur. Lemieux was drafted in 1984 by the Pittsburgh Penguins, and scored a goal on his very first shot in the National Hockey League. (It came against the Boston Bruins, unfortunately.) In 1993, he announced he had Hodgkins Lymphoma, and underwent a series of radiation treatments during the season, leaving the team for a couple of months. On the day of his last treatment, he flew to Philadelphia to play a game against the Flyers. He was given a standing ovation by the Philadelphia crowd, who rarely cheer for anyone. (This is the city whose sports fans booed Santa Claus, remember.)

The Penguins won 17 stratight games after he returned. He retired four years later, with three MVPs and five scoring titles, and was voted to the Hockey Hall of Fame. Two years later, he saved the Penguns from bankruptcy, buying the team, and eventually coming back to play for them again the next year, becoming the firsr player/owner in the league.

He started the Mario Lemieux Foundation soon after his diagnosis. It initially provided funding for Lymphoma research, but now it funds a number of other cancer- and child-related causes. In 2002, a Pittsburgh radio host said he would donate $66,000 to the Foundation if Lemieux ever scored a goal off a face-off. Lemieux did the deed that very night:



And yes, I included a hockey player just to make my brother happy. Otherwise I wouldn't have bothered.

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Next up: Paul Azinger. Azinger is a pro golfer; at the height of his career, he spent about 300 weeks ranked in the top 10 on the PGA Tour. And he was born in Massachusetts, which makes him even cooler than a pro golfer with lymphoma who was born in, say, Arkansas.

In 1987, Azinger finished one shot behind the leader in the U.S. Open. In 1993, he won his only Major, the PGA Championship. Later that year, he began having shoulder problems, and the pain in his right shoulder was soon diagnosed as a symptom of Non-Hodgkins Lymphoma. He described the experience of being diagnosed in a piece for Links Newsletter. His chemotherapy and radiation were successful, and he is now in remission.

He still golfs on the Pro Tour, and in 2000 he won the Sony Open in Hawaii. He also competed in the Main Event of the 2006 World Series of Poker. So that makes him a "two sport star," if you want to call either golf or poker a sport, but since ESPN does, I guess we'll have to acknowledge them as such.

This might look like a photo, but it's really an embedded video. It's just that golf is so damn slow....

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Finally, my second favorite PAL (Pro Athlete with Lymphoma) after Jon Lester: Joe Andruzzi.

Andruzzi played guard for the New England Patriots from 2000-2005, earning three Super Bowl Rings. He had played a few years for the Packers before playing for the Pats, and played for the Browns for two years after his time in New England. He has three brothers who are New York firefighters; one narrowly escaped from the World Trade Center on 9/11.




I can't find decent video of Andruzzi playing, but I do have this video of him with other members of the Patriots singing "Friends in Low Places" at a benefit. Andruzzi is the big guy with a beard.



Besides his Patriots connection, there are two things that make Andruzzi have Nodes of Gold. First, he is a graduate of Southern Connecticut State University, home of the Fighting Owls, and of my bi-weekly paycheck. Second, he's an NHL survivor. He was diagnosed last year with Burkitt's Lymphoma, which is very rare (only about 500 new cases each year) and very aggressive (tumors can double in size in 24 hours). SportsIllutsrated.com published a nice article about him and his recovery earlier this year.

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There are a bunch more people from the world of sports that have been diagnosed with Lymphoma, and returned to their sports, including Mark Fields, a linebacker for the Saints, Panthers, and Rams; John Cullen, who played for four National Hockey League teams, including the Hartford Whalers; and Butch Davis, coach of University of North Carolina football team, former coach of the University of Miami and of the Cleveland Browns.




Lymphoma is a funny thing, isn't it? Doesn't seem to be one of those cancers that you can blame something else on -- smoking, working in a pesticide factory, whatever. Even the healthiest of our world, our pro atheletes, can be affected.



Athletes earn their Nodes of Gold by showing us that life isn't over after diagnosis, or after treatment. There's even an article in a sports medicine journal that lets me know that even after treatment, I'll still be running those 10 minute miles with the rest of the OFS (old fat and slow) runners out there.


Here's to you, Jon, Mario, Paul, and Joe, and you other lympho atheletes. You have Nodes of Gold!

Happy Father's Day

I want to say Happy Father's Day to all you dads reading. My own father, certainly. And my brother. And my brothers-in-law. And the other fathers out there.

Two songs that I've always thought summed up a father's feelings really well. One from a father to a son, one from a father to a daughter. Will Smith's "Just the Two of Us," and Paul Simon's "Father and Daughter."

You thought birthdays mattered more to me now?

Happy father's day, all you dads.

Statistics don't matter

I had to share this. It came up in my support group last week, and I've been re-reading it and contemplating it. It's another one of those "hopeful" things.

It's one of many responses to a woman named Tina who was just diagnosed with follicular NHL. She had done some reading, and had found statistics about survival rates and the "incurable" nature of fNHL. The horrible twist in all of it: she has already been treated successfully for Hodgkin's Lymphoma. Totally cured. Then two years later, she found a swollen node and was diagnosed with follicular NHL. The doctor told her she probably had both types all along, and the treatment for the Hodgkins wiped out the Hodgkins, but only temporarily halted the follicular (they use different courses of chemotherapy).

So Tina wrote to the group asking those of us with fNHL how we dealt with it's being "incurable," with the depressing statistics, and the prospect that we'll live with this disease for a long time -- maybe forever -- either by having it, fighting it, or worrying about when it's coming back. Not a happy thing to think about and respond to, but I thought the response below was great. It gave Tina and the rest of us a lot to think about. It was written by a guy named Tony, who is a freelance writer and fNHL patient. (He has a great web site and blog called "The Lymphoma Files", if you have time to read someone else's.)

Here's what Tony has to say about depressing fNHL statistics:

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Hi, Tina - There are lots of reasons to be encouraged and look at your situation a bit differently. First, overall survival statistics have been improving. Historically, the Overall Survival (OS) has been about 10 years, but in the recent era (essentially, since treatment with Rituxin), figures have been improving for the first time. Now, we see OS of 15 years or more--Stanford released a report last year saying OS in their modern era is now 18.2 years.

I know. Right now you're saying, "I'm only in my 20s...even 18 years doesn't seem like a long time." But here's where you need to consider all the factors put together. Follicular lymphoma is a disease that typically affects older people; in fact, the median age at diagnosis is (depending on which figures you cite) somewhere between 60 and 67. Let's call it 65.

Now, let's keep two things in mind: 1) "Median" doesn't mean "average." It means half of the data fall above that number, and half fall below. So, half the people diagnosed with follicular lymphoma are age 65 and over, while half are age 64 or younger. 2) "Overall Survival" means just that: it does NOT refer to mortality due to the lymphoma. It refers to mortality related to anything: accidents, heart attack, stroke, and so on.

Why is this important? Well, consider the fact that half the population diagnosed is age 65 or older. Also consider the average life expectancy for an adult in the United States is now roughly 76 years or so. So, the 65-year-old diagnosed with fNHL has a median survival of something like 10 to 15 years. But guess what? The average 65-year-old who is perfectly healthy and disease-free is also likely to have a similar median survival.

Now, consider the fact that we're talking about overall survival, again with half the population in question above age 65. Naturally, this is going to skew the statistics; remember, Overall Survival includes people who die of any cause. And once again, median is NOT the same thing as average. When we're looking at 50% surviving less than 10 years (for example), and 50% surviving more than 10 years, that "more than 10 years" can--and does--include people who have survived 20 years, 30 years and more. Someone could survive 50 years after fNHL diagnosis, and they would still be reflected on this scale simply as a "10+ year" survivor. Make sense?

So, you're young. That's the #1 thing that's going to affect your overall survival.Now, there's the question of a cure. As recently as eight years ago or so, there really was no debate about this: pretty much everyone would have told you Stage III or IV fNHL was incurable. But now, there's an actual debate. Some respected oncologists are saying fNHL is curable in a certain subset of patients with treatments such as R-CHOP, Radioimmunotherapy, and the like. We don't have a full set of data yet (partly because data for fNHL has to be collected over several years--an improvement in survival can't be seen for more than a decade), so the jury's still out. We've debated the potential for a cure on this board before, but that's not what I think you should take away from what I'm saying. The simple fact that the debate exists right now is cause for hope. It shows progress, and that's future progress that will benefit your case.

Finally, even in the era before our modern treatments, you'll notice, by looking at the statistics, a flattening of the curve and a beginning of a long "tail" at about 15 years, and continuing out. That means some people were making it that long before Rituxin and modern improvements...even though they had an "incurable" disease. "Incurable" doesn't mean no one will survive, and looking at the statistics shows you that. The curves drop quickly in the first 10 years, but if you make it 10 years, you have a good chance of hitting 20 years, and if you make it 20 years, you have a good chance of going on long after that, running the natural course of your life. You can probably guess the kind of people who end up in that part of the long tail: twentysomethings who are active and love dressage, among other things.

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Read it again if you need to.What Tony gets at is how easy it is to misinterpret statistics, and how meaningless it is to even consider what treatments might be like in a few years, given how quickly things change in that area, and how important it is to stay hopeful.

When someone new joins the support group, the first things we tell them are (1) don't read or believe statistics you read on the web, and (2) remember that everything we know today about treatments will change tomorrow -- for the better.

No one has ever told me I have X amount of time to live, and I'm not asking for information. It would mean nothing, medically or personally. I don't plan on going anywhere anytime soon, so why bother?

Some Quick Updates

I'm teaching a summer course, which is great, but taking up lots of time (15 weeks of work in 5 weeks -- I discourage students from summer courses). Plus, this week there's an on-campus conference on teaching that I'm trying to sneak into when I can. (I always like hearing my SCSU colleagues talk about teaching. It makes some of them seem less mean-spirited when they talk about how much they care about students' learning.) And I'm still catching up from my four days in Philadelphia.


Anyway, that's all an excuse for why I'm not being better about blogging lately. People often tell me I'm lucky to "have the summers off." I wish.


So just some quick updates on a couple of things I've written about recently.


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First, on "Not Knowing":


This morning, a colleague from another department came up to me and said he'd heard some things about my health, and he while he was sure I had a support network, he wanted to let me know he was available if I needed someone to talk to.


That was really nice. I think he's the first person outside of my department to mention my condition. It's nice to "know who knows," at least with this one person. I wouldn't have guessed it would have been this particular guy who was the first to say something. We worked fairly closely together on a committee a few years ago, and while we had a few disagreements, we worked together well. But he isn't someone I talk to regularly. I was pleasantly surprised.

So I guess word is getting around campus, which is oddly comforting.

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I've been reading some other blogs from people who also went to Philadelphia last week for the Society for Technical Communication conference. Very interesting to see what they liked and didn't like about the conference. For me, it was one of the best conferences I've been to in a while. I learned a lot.

One blogger, who calls herself Tina (after the technical writer from Dilbert) talked about sightseeing in Philadelphia. She said that one day she "made a mad dash for the Art Museum and ran up the stairs like Rocky." I didn't get to the Art Museum, and it's my only real regret about the trip. But I just couldn't find time to travel across town and back without missing something good. (Did you know I have a little bit of a Rocky obsession? And did you know that Mr. T, co-star of Rocky III, is a lymphoma survivor?)

But then I looked at Tina's own "regrets" list. A friend of hers, a Philly native, had given her "a list of things to see and eat," and she didn't do any of them, including seeing the Liberty Bell and eating a cheesesteak. I did those things and more, without sacrificing my education. So I guess I'm one up on Tina the tech writer.

One other thing from Philly that I forgot to mention: STC had a raffle for everyone who registered for the conference hotel through their web site, and I won a prize -- a nice red iPod Shuffle. Sweet! (But Lady Luck still owes me big.)

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That took way more time than I wanted it to, or could spare. Blogspot failed to save my earlier draft, so I had to retype it all. Technology -- grrrr!

I'm working on the next Nodes of Gold entry. Look for it soon.

41

I'm 41 years old today.

I'm hoping this year is better than last year. It was right at my 40th birthday that I started having the physical problems that culminated in the lymphoma diagnosis. I think I've seen seven different doctors in the last year, and when they asked me to describe my problem, my standard opening line for all of them was something like, "Well, I turned 40 and everything went to hell." But it really did seem that way.

A year ago, Isabel and I got a last-minute babysitter on the night of my 40th birthday (we'd already had something set up for the next night), so we went to a pub down the street. I had two beers and a buffalo chicken sandwhich, and felt like crap for two days after. I finally went to the doctor, and was diagnosed with bronchitis. A round of antibiotics. Three weeks later, the bronchitis came back. More antibiotics. A couple more weeks, still couldn't shake it, so more antibiotics. In late July, we went away with Isabel's family, and by the middle of the week, I couldn't walk up the stairs without stopping to catch my breath, so I went to a nice country doctor who took a chest x-ray and said I had pneumonia. More antibiotics. Seemed to finally take care of it.

Had my annual physical in August. Everything looked great.

Then in October, I had weird feelings in my chest. Kind of breathlessness, but I was breathing OK, if that makes sense. A tightness, you could call it. I was sent to a pulminologist. Breathing test was fine, blood oxygen test was fine. So he asked me to keep a diary for a month to keep track of when I was feeling that tightness. It became apparent pretty quickly that it happened soon after I ate, so we figured it was gastroesophogeal reflux.

So I went to a gastro guy in November. Sounded like classic GERD, based on the symptoms. We scheduled an esophogeal scope for January.

Then in December, the node near my hipbone popped up. The general practitioner thought it might be something ("That's pretty big for a lymph node"), so she sent me to a surgeon. He checked for injuries, to make sure it wasn't just a normal swollen node, and put me on antibiotics for 10 days. Didn't help, so I had the node removed and biopsied.

On January 15th, I had my esophogeal scope in the morning, and when I got home, I had the message waiting for the doctor about the diagnosis. You're pretty well caught up on what happened after that.

Birthdays haven't really meant much to me since I was a kid. Nice to have a cake and presents, but it's always been just another day. When I woke up this morning, the first thing I thought was, "Well, I guess birthdays mean something now."

So thanks for reading over the past five months or so. Keep sending positive thoughts, good wishes, and prayers that this year is better than last year.

It's starting out pretty good.

Doctor's Visit

Had my 6 week check up with Dr. R this afternoon. Everything still looks good.


My bloodwork hasn't changed much. Red blood cells, white blood cells, and platelets are all at the same levels as last time. No problems there. If there weer changes, we'd have to investigate wheter or not they were signals of stuff happening elsewhere (like the lymphoma spreading to the bone marrow, for example). But all that's still fine.


The physical exam was good, too. No new nodes popping up anywhere. In fact, it seems like the cluster near my hip bone might have shrunk a little. (It felt the same way, to me too, while I was feeling around there a few days ago). That's good news, but not something to get overly excited about -- the waxing and waning is typical. Unlikely that's it's going aay on it's own (though I'm happy to entertain any miracles that come my way).


And I'm feeling OK, too. No fatigue, night sweats, or other B symptoms.


My mom is visiting for the week, and she was able to come to the appointment and meet Dr. R. She thinks he looks very young, which is true. She like him. He's very gentle, and very polite (he was nice enough to ask Mom if she had any questions). I think she mostly liked being able to picture now what it looks like when I say I'm going for an appointment. That's comforting.


So we're good for now. I go for another CT and PET scan in the middle of July, and follow up with him a week or so after that.


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I had a good few days in Philadelphia at my conference, the annual meeting of the Society for Technical Communication. I learned a lot, and got some nice ideas for teaching and research projects I'd like to do in the next couple of years.


I had a little fun, too. I saw the Liberty Bell and Congress Hall. I wasn't able to see Independence Hall, where the Declaration of Independence and the Consistution were signed; my spur-of-the-moment visit meant I was too late for tickets. But Congress Hall, where Congress first met, was very cool, because I've been slowly making my way through the 800 page biography of John Adams, which I read on the train to Philadelphia. So I got to see the room where Adams was inaugurated President, and where he presided over the Senate when they debated for months over how to address President Washington (Mr. President? His Majesty the President?), nearly driving him insane. That was pretty cool.


I also got to see a former student of mine, now a very successful technical writer in Colorado; I saw a Phillies game (Ken Griffey, Jr. walked in his one at-bat, and so didn't hit home run #600. We booed the pitcher for not putting it over the plate); I had a very good Philly Cheesesteak from Rick's (which will be closing in a few months); and, of course, I chatted with colleagues from across the country and the world about writing.

It was rejuvinating. I'm glad I went. Nice way to close out my time as department chair.

National Cancer Survivors Day

Today is National Cancer Survivors Day. The group that sponsors the day has a website. They call anyone with cancer now, or in remission, a survivor.

So today's my day.

Woo hoo!