Watching and Waiting

Occasionally, someone in my support group will bring up the topic of "watching and waiting." Maybe it's someone new, who wants advice on dealing with it. Maybe it's a veteran of the group, who's just going through a rough patch. But it seems like everyone, at some point -- maybe at many points -- goes through that difficulty that makes some people on W & W refer to it as "Watching and Worrying."

I'm no different, I guess. I have myrough patches. Part of the difficulty (well, I guess it's the only real difficulty) of watching and waiting is in being in a kind of purgatory. We're sick, but we're not too sick. We're happy that we don't have to be treated yet, but we wish we could something. We feel OK, but every little ache, pain, bump, lump, creak, crack, whatever, is magnified. Is this it? Is the waiting over now? Does the serious stuff begin? Do I have to stop pretending maybe this was all a mistake? You're just never quite sure what's happening.


NHL is not the only cancer to use a watch and wait strategy. Prostate cancer is also sometimes very slow growing, so low-risk prostate cancer also uses watch and wait, and older prostate cancer patients (over 70) are sometimes told to watch and wait, too. It's slow growing enough that it won't really affect them for years. In fact, many men die of other causes, without ever knowing that they'd had slow-growing prostate cancer.


The NHL community has been using watch and wait for a while. It makes sense for a lot of people, and about 20% of NHL patients choose to watch and wait after diagnosis. If there are no symptoms, and the lymphoma is growing slowly enough, there's no reason to begin the expense and discomfort of treatment. Another big reason for watch and wait with follicular NHL is that fNHL has a nasty habit of coming back after it's been (seemingly) wiped out, and the sequence of treatments after recurrence becomes important. So watching and waiting allows for more options later on, and for more time for newer, more effective treatments to be tested. Those are certainly my main reasons for waiting.


So why all this reflection on watch and wait?


There's been a trend in the last few years against watching and waiting. Because there are now so many options for treatment, some doctors think it's not worth the emotional stress of waiting -- better to give someone treatment right away, especially if the first-line treatment is something without too many side effects, like Rituxin. And in younger patients, there is a feeling that they can handle some of the rougher treatments that may be more useful in achieving a lasting remission.


But now there's a slight shift back the other way -- that's what's prompted the relection on watch and wait for me. Some doctors at Dana-Farber are speculating that a large number of people might have indolent lymphomas like fNHL for years and don't know it. So they've been on a kind of watch and wait unknowingly. They are speculating that the recent spike in the number of incidents of fNHL is kind of false. There isn't more fNHL out there, it's just that better screening and testing has revealed more cancers that have always been there, but undetected. So they're suggesting watch and wait be used more, since the nature of fNHL is to keep growing slowly.


That's good news, if you look at the big picture. There may very well be more people diagnosed, but who don't need treatment for years, which will raise the overall survival numbers significantly. Statistics provide hope -- a false hope, but hope nonetheless.

Of course, it's less good news for people who have already been diagnosed, and whose lymph nodes popped up enough to need treatment. But overall, it adds to the kind of hopeful picture that I look for.


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I'm leaving town for a few days. Off to a technical writing conference. I'm looking forward to learning lots of new stuff. I haven't had many opportunities for this kind of thing since I've been department chair. I'm seeing the trip as the start of a kind of new chapter in my life. I'm done as chair in August, so I can get back to teaching teaching and research, and I look forward to incorporating some of the new stuff I learn next week into my classes. I really miss the excitement that I used to get from teaching and scholarship.

But it means I probably won't be posting anything until next Thursday. I'm leaving my laptop at home, and I don't know what kind of Internet access I'll have. Plus, would you really want the kind of updates that I'd be able to provide after being in seminar rooms all day? Me babbling on about web 2.0 technologies as potential tools for interactive documentation? Sure, I think it's fascinating.....

Next Thursday is also the day I go back for my next check-up with Dr. R. I'm not anticipating any changes. I feel good (ran 3 miles this morning!). But you'll need to wait a week for the details.

The Lesters

You may have heard the news by now: Jon Lester, Non-Hodgkins Lymphoma survivor, pitches a no-hitter, and about a week later, he reveals that his father was diagnosed with NHL about a month ago.

Very sad. The younger Lester apparently had a form of NHL called anaplastic large cell lymphoma. It's fairly rare, and fairly aggressive. He seems to have had appropriately aggressive chemotherapy.

His father, on the other hand, has an indolent type -- slow growing, possibly Follicular NHL (the most common indolent type). He's in the middle of chemo treatments now. Interesting to think about the course of treatment he is going with, considering it's indolent. Seems like fairly heavy chemo, from what I've read. My guess is that it was diagnosed at stage 4 -- maybe had traveled to an organ, or he had some bone marrow involvement. (I'm at stage 3, in case you needed the reminder.) Sounds like he's doing well, though, which is great. I wish him luck.

The Boston Globe ran a nice story Sunday about Jon Lester and the poise he exhibits, on the mound and in life. Apparently, the story about his dad's NHL broke when he was interviewed on ESPN. The story from ESPN.com has a film clip from the interview.

I think the really interesting part about it all is his father's desire to tell people, given what I wrote recently about "not knowing":

Father and son had debated whether or not to talk publicly about his dad's condition. John Lester wanted his son to get it off his chest.
"He's telling everyone ... like he won a prize," Jon Lester said. "It makes him feel better to sit there and talk about it. He can tell people, you know what, I have cancer, I'm doing great, everything is going to be good and people look at him like he's crazy."

I hear ya, buddy.

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In other Red Sox news: Even I'm not a big enough Sox fan to have my baby baptized at Fenway.

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We had a great trip to Maryland this weekend, to see our niece Amy graduate from the University of Maryland. Actually, we didn't see her graduate, we just showed up for the party. But it was a fun time, and we're very proud of our UMd grad.

Amy, now that you'll be able to afford better beer, and you'll be too exhausted to get up off the couch at the end of the day, you'll appreciate this cool invention.

And I'm sure you'll agree it is about the only decent thing to ever come out of Duke.

Go Terps!

Another busy week

We had a ton of stuff going on this past weekend, so it's a good time to do some bragging about the kids.


Very musical, artsy weekend. Saturday, John's choir sang at the Cathedral of St. Joseph in Hartford. It's a very large, very beautiful building. They sang a four song prelude, and then two songs during mass, with voices and hand bells. They're a very talented group of kids.




Sunday was Catherine's dance recital. her group did two numbers, one ballet and one tap. The ballet piece was done to "The Rainbow Connection," a nice song made all the more beautiful by the girls' dancing. I was amazed at how much difference a year made. Last year, they were distracted and awkward. Now, at 6 and 7 years old, they actually had some grace and poise. They didn't dance to the Kermit the Frog version from The Muppet Movie. I'm not sure who covered it, but it was very nice. I must admit, I was in tears by the end of it. I was happy the tap dance was to Hakunna Matata from The Lion King. No overly emotional reaction to that one.


Then on Monday night, the school had its Spring Concert. Peter's band played a bunch of songs, and he and another alto sax player did a Mozart duet. Very nice. The third grade also played, putting on a recorder concert. It was surprisingly good. John had a solo, playing a few verses of "Long Legged Sailor." He's unflappable. The music teacher messed up the order of the songs, but he went up again when it was his turn and, in the middle of his piece, responded to Isabel's thumbs-up by giving her a wink. Pictures of the boys are coming soon.


Tuesday night we were blessed with rain, which meant a cancelled baseball game.


Wednesday night, Isabel was asked to attend the school awards ceremony with Catherine. She wasn't told what the award was, or which of them it was for, only to show up. It turns out Catherine was awarded the Phil Costello Memorial Scholarship, given to a first grader every year who works hard and shows school spirit. A very nice surpise. (They gave it out last, after an hour and a half wait, so Catherine was exhaustedly rolling on the floor asking "Why am I here?" up until they called her name.)


Today, we're off to Hartford for another lunch time concert for Peter, this one on the lawn at the Old State House.


After today, Peter is done with band, and now Catherine is done with dance. Things are slowing down gradually.


Tomorrow, we're off to help Amy celebrate her graduation from the University of Maryland. We're very proud of her.

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You'll notice in my profile that the James Brown avitar is still there. I'm still feeling good. Haven't mentioned that in a while. (Must be all that produce I'm eating.)

Jon Lester

In case you haven't heard (and I know my family has heard), Jon Lester of the Red Sox pitched a no hitter last night.

Lester is, of course, the young pitcher who was diagnosed with a form of Non-Hodgkins Lymphoma two years ago. He was treated successfully, and won the deciding game of the World Series last October. And now a no-no.

Isabel and I were exhaustedly flipping around the channels at about 9:30 last night, trying to come down a little before we went to bed. I checked ESPN to find a score for the Sox, and the banner said "Breaking News: Red Sox Jon Lester entering 9th with a no hitter."

We switched to NESN, and I ran upstairs to get Peter. So he got to watch the last inning with us, and see the no hitter happen.

This is huge for us. Lester has been a kind of symbol of hope for Peter. When we told the kids about the diagnosis, John and Peter were so tense when they heard the word "cancer." When I reminded Peter that he'd heard of NHL before -- it was what Lester was diagnosed with -- I could feel his whole body relax. We've been following him closely all season.

After the last pitch, I immediately went to the computer to share the news with my online support group. Reactions are still coming in, but they're all thrilled and inspired.

Here's a quick story on ESPN.com, with video of highlinghts of the game.

It's such a good thing.

Eat Your Vegetables

If you are what you eat, then I want you all to be antioxidants. To paraphrase Ty Webb from Caddyshack, See the antioxidant...Be...the antioxidants...."

Two excellent bits of cancer- and diet-related pieces of news recently:

First, great news for you all from the American Journal of Clinal Nutrition.

In an article called "Dietary Flavanoid Intake and Non-Hodgkin Lymphoma Risk," researchers concluded that "Higher total flavonoid intake was significantly associated with lower risk of NHL." Basically, they are seeing that eating foods that are high in certaint antioxidants might help prevent NHL, both agressive types and indolent (like follicular) types. The antioxidants mentioned are found in foods like onion and garlic; kale and broccoli; spinach and dark green lettuces; tomatos; apples; grapes and deep-colored berries; tea (especially green tea), red wine, and chocolate.

So that's good news for you. Less good for me, since it's about preventing NHL, but some of those foods are also thought to help slow down tumor growth (a recent study I read about seemed to show that steamed broccoli, more than other ways of preparing broccoli, brought out larger amounts of tumor-slowing compounds).

Yet another reason to eat well, just in case getting older wasn't reason enough. (And now you can feel less guilty about getting raspberries and dark chocolate in your next Dairy Queen Blizzard -- you're preventing cancer, after all.)


The other piece of news: researchers have found that just a few habits will greatly increase the quality of life of cancer survivors. Pretty simple: exercise for 30 minutes a day, five days a week; eat 5 servings of fruits and veggies a day; and stop smoking. That one is good news for me. OK, technically, I'm not a "survivor" in the way the term usually used (someone in remission), but I consider myself a survivor from the day I was diagnosed. And I'm doing all of those things now.


The common thread is the fruits and veggies. Get into the habit if you aren't already in it. Admit it -- you need more fiber in your diet anyway. I've taken to keeping a bowl of fruit on my desk at work and having an apple or orange instead of going downstairs to the coffee wagon for a bagel. Maybe not a cure-all. But it's good in so many ways.


The USDA is trying to keep a searchable list of Farmers Markets on its web site. Look for one. Visit often. Eat more produce, cut down on the gas used to deliver it, and support your local economy.

Amen.

Not Knowing

It's going to be one of those posts. All introspective and stuff.

Yesterday was my four month anniversary -- I was diagnosed on January 15.

It's been a sort of rough couple of weeks. My time as department chair is almost over. We're just about finished with final exams. I will officially stay department chair until the middle of August, but a lot of the heavy work is just about done. A lot, but not all. I have four or five lingering issues that probably won't go away any time soon, and I may actually be involved with them long after I'm finished as chair. The job is stressful enough, as academic jobs go, but these few issues are making it worse. I usually sleep well, but lately I've been waking up early and not being able to get back to sleep. Too much going through my head. But I'm OK.

I think the hardest part of all of this is the not knowing. There are lots of things I don't know, which, as a professor, I am both used to and frustrated by. We professors like to think we know a lot, if not everything, but we also buy into that whole "The Smartest People Are Those Who Understand How Little They Know" thing. Blah blah blah.


There are still things I don't know about follicular NHL, but I'm feeling more confident that I know what I'm able to know: how it grows, how it transforms, why it does what it does.


But there are lots that I don't know, that no one really knows: The best treatments. The best sequence of treatments. When to begin treatment. That kind of thing.


But the thing about all of this that has been nagging me most lately: I don't know who knows that I have NHL.


Obviously, there are family and friends and colleagues who know, because I have told them, and they have let me know that they know. Everyone reading this obviously knows.


But there are colleagues in other departments at work, parents of the kids' classmates, acquaintances I see just about every day -- people I haven't told directly, but who may have heard from others. They haven't said anything directly to me about it. It's strange not knowing if, when they ask how I'm doing, they mean a normal, polite, greeting-type "How are you doing?" without expecting an answer, or if they mean a whispered, pained, concerned "How are you doing?"


In some ways, I don't really care if people know or not. It's nice to avoid having to tell people how I'm doing. And if people don't act concerned when they see me, it must mean I still look "normal," which is probably a good sign. But I also don't like the idea of people avoiding me because they're uncomfortable asking how I'm doing. Easier to just say a quick hi and move on.


I'm not uncomfortable talking about cancer. But I'm not one to bring it up, either. And if I do, it's by e-mail, usually, with lots of build-up and warning. I inadvertently blindsided someone a couple of weeks ago when I brought it up as we were talking. I assumed she knew; she was part of an e-mail I sent out to a lot of people when I needed to tell colleagues. So when I dropped the cancer bomb on her, she got very upset. Which made me feel bad. I don't know how people will react to the news, but if they get sad, I'd rather they had a chance to do that in private, which is why I tell people by e-mail.


Telling people about cancer is hard, and I don't envy doctors who have to do it. Of course, my own doctor did a crappy job of it.


In some ways, I was prepared for the news long before it came. In October, when I had the CT scan that showed the abnormal node and the spot on my lung, I looked up what the abnormal node might mean. Could mean nothing, I found out, but it could mean a lot of other things, including lymphoma. One general symptom of lymphoma is swollen nodes in two areas of the body. So when the second node popped up in December, the first thing I thought of was the lymphoma possibility. Dr. G, the general practitioner, sent me to a surgeon, who tried antibiotics to make the node go down. When it didn't, he did a biopsy.


When the biopsy results came back, Dr. G left a message for me. When I called back, she said she wanted me to come in to talk to her about the biopsy. "Anything wrong?" I asked. "Why don't you just come in," she said. Well, gosh, I guess everything is fine. She just wants to chat in person. No surprise there; I'm charming as all get-out.


I can't blame her for the attempt at cushioning the blow. Better that she gives it to me face-to-face so she can help me deal with it. But that was such a clear signal that the news was bad, it wiped out any cushioning that the face-to-face meeting might bring.

I saw Dr. G a couple of hours later, with Isabel. She kept us waiting for a while (a bad habit of hers), and then when she came in, she asked how I was doing. "OK," I said. Then she asked me, "Stressed?"


Stressed? Why the hell would I be stressed? You wouldn't give me biopsy results over the phone, and you think I might be feeling some stress? Then she said she had bad news, and told me it was lymphoma. She gave me a little more detail about the biopsy results, and when I started to ask my thousand questions, she cut me off and said the oncologist would be the one to answer them. She then asked if either Isabel or I would like a prescription for anti-anxiety medication. I said No. (I wasn't feeling anxiety, really. A little numb, but, like I said, I'd already told myself the lymphoma was a possibility.) Isabel also declined, pointing out that we had three kids and at least one of us should probably not be drugged up right now.


So, overall, I'd give Dr. G about a 4 out of 10 for how she handled it. But I can also relate. It's hard to tell people. Which brings us back to my not knowing who knows, and why they're probably not going to get the news from me.


The good news is, part of why it's hard to tell people is that I don't look or feel "sick." But then, not looking sick creates problems, too. They want to know why I'm not being treated yet. And then they start wondering if there's really anything wrong, or if it's really as serious as the word "cancer" suggests. So then it takes a half hour to explain what fNHL is, and how it's indolent and slow-growing, but there's a chance it could get aggressive, and yes, it really is serious, and on and on.


So that's where I am. Like with everything else about follicular NHL, how I'm feeling about it is kind of in between. There are people I wish would know about it, but I also don't want to burden them with it until I have to. So I'm in no hurry to break the news.

Feel free to do it yourselves, though. Better you than me.

Field Trip

I gotta say, I don't think I fully appreciate the humor in this Pearls Before Swine cartoon....




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Yesterday, I chaperoned Catherine's field trip to the Peabody Museum of Natural History. It was a lot of fun. This is two Mondays in a row that I'm exhausted by my chaperoning duties. It took days to recover from the NYC trip with Peter. This time, I watched over a group of four first grade girls, Catherine and three of her friends.




Here's what I learned yesterday about six year old girls:




1) Six year old girls like sparkly things. Hannah's belt was sparkly. The pyrite and quartz on display in the Discovery Room were sparkly. Even the bronze casting of a Neanderthal skull, when the light hit it from just the right angle, was sparkly. They notice and take much joy from these things.




2) They have more answers than questions. During the hour-long presentation on Connecticut wildlife, each kid was supposed to examine the dioramas on the third floor and present the speaker with one "I wonder" question about something they saw. ("I wonder how a turtke breathes?" was the example they were given.) They had no questions. They had answers, facts, trivia, and stories, and each kid raised his or her hand as high as it would go to share it. But the funny thing is, when they gave their answers, they made them sound like questions, with their voices going higher at the end.




Catherine's friend Francine was especially good at this. She's absolutely adorable -- a tiny little girl with enormous brown eyes, and all morning, she would grab my arm and look up at me and say things like, "My dad and I watch a science show every night? Albert Einstein? He was the smartest man in the world? But he's not any more? Because he's dead?"




3) They don't walk, they skip. Everywhere they go. And when they skip too fast, and a teacher or docent tells them to stop running, they somehow manage to skip in slow motion. They push their hips forward, stick out one leg in front of them, lean forward and hop onto that leading foot, fall backwards onto the other foot, and start all over again. It's a physical feat that rivals any of the exhibits on display.


4) They hug. A lot. They hug each other as they walk. They hug each other as they meet at the back side of a museum display that they circled in opposite directions, hugging as if they haven't seen each other in 30 years, rather than 30 seconds. They hug large models of stegosaurus leg bones. They hug the glass case of the really cute elephant shrews on display in the Tree of Life exhibit. They dole out hugs like Paris Hilton spends money. The hug is their currency.




So I spent the morning with four constantly sparkling, skipping, hugging, talking six year old girls. Which was not a bad way to spend half a day, when you think about it.