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.

Happy Mother's Day

Hey all you moms -- Happy Mother's Day to you. You're the best. Especially the moms in my life, my wife and my own mom, and my mother-in-law, who have been so wonderful through all of this. None of them posts any comments, so you never really "see" them on the blog, but I know they're always there. Thank you.

For Your Consideration

I want to put in another plug for my brother's Pan-Massachusetts Challenge ride in August. I mentioned it a while ago, soon after I first started writing the blog.

Here's the PMC Mission Statement:

The Pan-Massachusetts Challenge raises money for life-saving cancer research and treatment at Dana-Farber Cancer Institute through an annual bike-a-thon that crosses the Commonwealth of Massachusetts. Since its founding in 1980, the PMC has successfully melded support from committed cyclists, volunteers, corporate sponsors and individual contributors. All are essential to the PMC's goal and model: to attain maximum fundraising efficiency while increasing its annual gift. Our hope and aspiration is to provide Dana-Farber's doctors and researchers the necessary resources to discover cures for all cancers.
The link to the web page is http://www.pmc.org/


There are a few different rides, covering anywhere from 84 to 180 miles. Mike will be riding 163 miles over two days. He's still looking for donations, and all donations will be happily accepted. If you want to send a check to my brother, make it out to PMC and send it to his home address: 7 Village Gate Rd, Canton, MA 02021.


You can also donate on-line, by credit card. Each rider has a personal web page where credit card donations may be made. Mike's page is:
http://www.pmc.org/mypmc/profiles.asp?Section=story&eGiftID=MM0386


If anyone has trouble with the link, his page is also available by going to the main site: http://www.pmc.org/ and clicking on the PMC Profiles section on the left. From there, you can look up his page by entering his name.

Mike's personal fundraising goal is $5,000 this year. He's been riding on the weekends with a group of people from Stoughton, MA (also the location of my niece Nicole's archrivals in soccer; her allowing him to associate with them says how important this is to both of them). The rest of the team members have all participated in the PMC over the past few years. Mike says their training rides have been 30 – 35 miles in distance, and they're slowly working up to 50-75 miles. Says Mike, "Thankfully, I was smart enough to upgrade from my 25 year old Schwinn for something lighter, an 18 gear bike. I must admit a bit of Pee Wee Herman exuberance comes over me when I saddle up."

(Mike didn't provide that Pee Wee link -- that was all mine. And since we're at it, here's Pee Wee eating his Mr. T cereal. Did you know that Mr. T is a lymphoma survivor?)

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But seriously, this is why the Pan-Mass Challenge is important:


Cancer drugs are developed by large pharmaceutical companies, and while I really hate that they keep showing male dysfunction drug commercials during American Idol when my kids are watching, I've come to appreciate the work they do in this area. (Cancer, I mean.)

But other treatments are being developed by independent cancer centers like Dana-Farber, which is affiliated with Harvard Medical School. Dana-Farber has a long history of developing some very innovative cancer therapies, and they have a whole bunch of "firsts" in research into how and why cancers behave as they do, and how to make that stop. A large number of those innovations are in blood cancers like lymphoma and leukemia. Right now, they are on the forefront of research in autologous stem cell transplants (where they harvest blood stem cells from the patient himself) and those cool individualized lymphoma vaccines I've written about. At the moment, they are conducting about 400 different clinical trials for cancer therapies; 57 of them are for Non-Hodgkins Lymphoma.


Many of the studies are funded by grants and donations and other fundraisers like the Pan-Mass Challenge.


Times are tough, but please consider making a donation to my brother's ride. Every little bit helps.




Thanks.

Brushes with Greatness

We had a very fun, very eventful day in New York City on Monday.

Peter is a member of the FMI Symphonic Band, one of four state-wide bands made up of Catholic School students in Connecticut, grades 5-8. It's rare for a 5th grader to make Symphonic band, but Peter did it, and plays alto sax for them.

The FMI bands put on three concerts in the spring, and one of them takes them to NYC, where they perform on the plaza at Lincoln Center for a lunchtime concert. Isabel and I were both able to go with him, serving as chaperones (and for me, as a roadie, hauling percussion equipment for one of the instructors).

The bus ride to NYC took almost three hours, given traffic on I-95 and in Manhattan. The concert went off fine. The FMI Concert Band played first; Peter's buddy Anthony, also a rare fifth grader, plays trumpet for Concert Band. Peter's Symphonic Band played after them. Both bands had enthusiastic crowds of parents, but also construction workers, office workers, parents and children, and other assorted New Yorkers who were happy to hear some excellent music for free. During the first piece, Peter had a small emergency with a broken reed, but he was a consumate professional and fixed the problem and played on. Fabulous performances all around.

After the concert, we all went on a tour of Madison Square Garden. Our tour guide, Joe, had a bad habit of talking before the entire group was gathered arund him, but we stayed close and managed to hear most of the good stuff. Joe sounded a little like George from Seinfeld -- a little less manic than George, but about as tuned in to others' needs.

The tour included a peek inside the Knicks' and Rangers' locker rooms. They didn't smell too bad, which was nice. But what was really cool was that outside the locker rooms were pictures of Knicks and Rangers who have made their respective Halls of Fame. I got to see the picture of Phil Esposito, my childhood hero, who was traded from the Bruins to the Rangers when I was 8. And here I am with Brad Park, who was traded for Espo, and became my new hero when I was 8. that was very cool.

After the Garden tour, we had some time on our own in Times Square. Now, Peter gets a little embarrassed about "babyish" things, but his buddy Anthony embraces all things weird and childish, and so Anthony dragged Peter over to take a picture with Elmo. There are lots of costumed characters in NYC, getting pictures with tourists while they advertise various goods and services. As far as we could tell, though, Elmo was not advertising anything. It was most likely an unemployed young woman in a ratty Elmo costume who posed for the picture and then held out a canvass tote bag that said "TIPS." So we felt like we were moving the economy along when we have her a dollar.

After wandering around Time Square, we had dinner at Planet Hollywood. Here's where things got really interesting.

Planet Hollywood is a celebrity-themed restaurant, as we were told by our waiter, Bumper, in the lobby before we went upstairs. The restaurant was started by, among others, Sylvester Stallone and Bruce Willis, so there's lots of memorabelia there from those two stars, plus other things like the original Chewbacca costume from Star Wars. They also host a lot of celebrities there in a private room.

Well, as we were waiting outside to be seated, a group came in flanked by police officers. One man looked just like Snoop Dogg -- the rapper featured in this very blog just a few days ago (see the final video that Strudel posted)! That got us very excited, to say the least. As we were waiting in the lobby to be seated, who comes down the stairs, but three members of Three 6 Mafia, the rap group that won an Oscar for Best Song for "It's Hard Out There for a Pimp," featured in the film Hustle and Flow. I'm not going to post a link for that video. You can figure out why on your own. But I'll give you the link for Three 6's "Poppin' My Collar," a song a prefer anyway.

We went upstairs and were seated, and then we ordered, and I took Anthony and Peter for a walk to look at the memorabelia, including this display with the robe and boots work by Sly Stallone in Rocky III (which, of course, co-starred Lymphoma Survivor Mr. T).

We went back to our table, and Peter went to the bathroom. Her ran back to us, saying "I saw Snoop Dogg in the bathroom!" How did you know it was him? we asked. "He was talking to some guy, saying Fo' Shizzle, my nizzle bizzle fizzle!" Five minutes later, after we finally stopped laughing, we asked if he was sure it was Snoop, and he told us that he confirmed it with the bathroom attendent.

Soon after, we got on the bus and headed back home, visions of childhood heroes, out of work actors, and medical marijuana dancing in our heads. We were home by about 9:00.

I am, to say the least, still exhausted. But it was worth it, not just because Peter did such a great job, but also because, well....do I really need to tell you why?

Sad Derby Day

We had planned on going camping this weekend with our friends the Lamonts, but the threat of rain, and the reality of cold temperatures, made us decide to cancel Friday morning. Instead, we decided on a Kentucky Derby party for Saturday evening. Memories of our time in Louisville. So we spent the afternoon making Burgoo, Hot Browns, Benedictine, and Mint Juleps.



We also decided we'd have a $10 prize for whoever picked the winning horse's number out of a hat. John was happy with his picks -- the favorite, Big Brown, plus Colonel John. I chose Pyro and Eight Belles.



Well, if you follow the Derby, you know that Big Brown won, so John got the $10 prize. My horse, Eight Belles, came in second, but then came up lame right after the finish, and had to be euthanized right on the track. It put a real damper on the race. Isabel and I have been to, and watched on TV, plenty of horse races, but you always get that same aweful feeling when you see a beautiful animal have to be put down. John was hit especially hard by it, animal lover that he is.



After they announced what had happened to Eight Belles, we turned off the TV and I went upstairs to put the food out. John followed me. He gave me a hug and told me I could have the $10. It took me a second to realize he was trying to make me feel better about my horse getting hurt.



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Tomorrow, Peter will be in New York City, where the FMI All-State Symphonic Band will be playing a lunchtime concert on the plaza outside Lincoln Center. He'll be playing also sax. They needed extra chaperones, so both Isabel and I will be able to go and see him. I'll try to get some pictures up in a couple of days.



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Hey, Nicole -- I don't want to spoil it for everyone, but does the answer to your riddle have anything to do with Roman numerals?

Strudel Responds

So Cancer Boy decides I can say what I want to say, huh?

Oh, have I got some things to say.

A few days ago, Cancer Boy said I was whining all night to go out for a run. I wasn't whining to go out for a run. I was whining because I was reading this stupid blog. The comments, especially -- they frustrate me. They are suppoed to be funny? I'll tell you what's funny. Arte Johnson as a German soldier -- now that's something a schnauzer can laugh at.

Yes, I read the blog. I wait until everyone is asleep, and I click on and I read. I don't write -- not without permission. That would be unethical. Schnauzers are ethical. Unlike poodles. Don't get me started on the French.

So here's what I have to say about some of the things that have been in the blog lately:

First -- I am not a reluctant runner. And Cancer Boy certainly doesn't pull me along. I'm a dog. We run. It's what we do. Fish swim. Birds fly. Dogs run. You could say, Baby, we were born to run. Ha ha. I know how obsessed Cancer Boy is with YouTube, so here's a video. I like The Boss, but I like Little Steven more. I watch Cancer Boy's Sopranos on DVR when he leaves for work.

So, yes, I like to run. But I know how to pace myself. Unlike Cancer Boy. Him a runner? Please. He runs to Dunkin' Donuts. Spills his latte all over himself when he runs back home. That's why he always smells like caramel.

Speaking of running: I saw the video of the stupid people on the treamills. You all run like a bunch of cats. What is wrong with humans? It is running, for the love of Great Danes. Stop rolling in catnip, you fools, and pay attention to what you're doing. You want to see how to run on a treadmill? Here's how. See? Not so tough. I chose a Bassett Hound puppy -- his legs are as long as your fingers, and even he can do it without falling down.

You want to see one that's really impressive? Check out this doberman. Don't try that fast. You'll end up on YouTube, or in a hospital, with a broken hinterbocken, if you know what I mean.

(And yes, that fast one's a German breed. Superiority in action.)

Now, up next -- you, Hockey Boy. The Cancer Boy's brother. Again, with the videos. All the goalers fighting. Stop that. That's bad hockey. You want to see good hockey? Here's good hockey. Now that's being a good goaler, hey Hockey Boy? The kid cheated at the end. Cat-loving little brat.

You want to know what is bad dog hockey? This is bad -- undignified, especially for a fine German breed.

This is also bad dog hockey. I don't think this guy is a real dog. Sounds like he's been rolling in catnip. And he spells dog with two g's. There's something wrong with him.

That's all for now. I keep reading the blog, and your foolish comments. And I'll run with Cancer Boy. I'll even let him drag me some more. Make him feel like he's fast and strong.