Thursday, July 31, 2008
Wednesday, July 30, 2008
No nodes have increased in size, though a few in the abdomen and near my hip bone have actually gotten smaller. My blood work was "rock solid," and my physical exam revealed nothing out of the ordinary.
Everything looks great.
I'm off to a guitar lesson now....
Sunday, July 27, 2008
Last Tuesday, John finished dinner and went outside to play in the backyard. Isabel and Catherine joined him. I stayed inside to do a little work (probably writing a blog post). Catherine came in after a while, asking me to come outside quickly.
A bird had apparently hit the large wooden fence that the neighbors behind us had put up a few months ago. It was obviously hurt, but we weren't sure how, or how much. It was trying to hide in the ivy at the base of the fence, squeeling, and trying to fly.
John, of course, was a wreck. He's our animal lover, our naturalist, our Saint Francis. He wanted to do something, anything, to help this bird. Isabel went inside to consult Google for advice. It looked to me like maybe the bird had a hurt leg, maybe a hurt wing, maybe both, but whatever was wrong, it couldn't take off. I thought maybe it was caught up in the ivy, so I tried to move it away from there, but it kept hopping back to its hiding spot. In the meantime, Isabel had found out that sometimes birds who fly into things like windows are stunned, and need a few minutes to clear their heads before they can fly off. We decided we'd give that a chance. He was covered by the ivy, which seemed to hide him a little, so the neighbor's cat wouldn't be able to get to him. We also thought that having the three of us standing over him was probably really stressing him out. We went inside and watched from the window to make sure the cat stayed away.
After about 10 minutes, we checked again, and nothing had changed. Still hurt and hiding. Our neighbors came home, and we asked them for advice. They suggested we call the animal hospital for advice.
Seems like a lot of work for a bird, doesn't it?
You don't know John....
The animal hospital gave us the name of a bird rehabilitation specialist in New Haven. We called her, and she told us to bring the bird to her right away. She assured us that she'd do what she could to help the bird and make him comfortable. Her husband gave us directions, and we got a shoe box to put the bird in. John sat in the back seat, comforting the bird, telling him it was going to be OK, while I drove us 20 minutes to an unfamiliar neighborhood in New Haven, looking for this woman's address, following the insane directions that he husband gave us. The bird flapped around in the box every few minutes. After about 15 minutes, it seemed to quiet down.
We finally found the address. We weren't sure if we were searching for was some kind of industrial-looking animal rehab center, or a house, or what. It turned out to be a house, a beautiful old Victorian in a neighborhood of similar old houses. A kid was sitting out front, peering over the hedges. Before we could say anything, he told us, "He's in the back." We went around to the back of the house, and three more kids were fixing their bikes. "He's in the van," one of them told us, and then he shouted "Adam!" A man came out from behind the van a minute later. He opened the box and looked at the bird, which gave a little peep. He told us to wait, and brought the bird inside. A few minutes later, his wife, Jen, came out and introduced herself. Then she said, "I'll do everything I can, but I'll be honest, it doesn't look good." I asked if we could call and get an update the next day, and she said we could. The she gave us some Starburtst candies. As John and I walked back to the car, Jen called to us, "Thank you for caring."
We got back in the car. John was pretty silent for a few minutes, and then he said, "We should have gotten here sooner. Then she could have saved it." I told him she might still save the bird, and even if she couldn't, John had done everything he could for it -- far more than most people would have.
And then it started.
"This is the worst year ever!" he said.
Through tears, he gushed out everything bad that's happened in the last six months. It really has been a rough year. My cancer diagnosis. A wonderful priest we know died fairly suddenly a couple of months ago. His piano teacher is moving away to take another job. His choir teacher is moving to Florida to get married. "And now this had to happen to the bird!"
John's such a complex kid. He does love animals, and connects to them very deeply, and that's a big reason he was upset. But the bird also represented so many other changes that have taken place since January. And one thing John does not like is change. And this has been a whole lot of change for him in a short period.
Much more so than his brother and sister, John also has a heightened sense of his own mortality, a by-product of his food allergies. He also has Benign Rolandic Epillepsy, which, as the name says, is a benign, non-life threatening, and he should outgrow in a few years. But when he does have a seizure, he's sure he's dying. In fact, when he has a stomach ache, or a sunburn, or a bout of asthma, he says the same thing: "Let me guess -- I'm dying, right?"
I don't know if I can take John as a barometer for the other two, our canary in a cancerous coal mine, letting us know that, if he's upset, the others must be upset as well. Catherine still seems too young to really understand what it all means. Peter is so intense about everything that it's hard to tell when he's affected by the cancer situation, or how, though Peter also has Jon Lester to give him hope. Peter connects to the Red Sox the way John connects to nature.
So that's what nice about John -- he's willing to talk and let us know how he's feeling.
John's always been kind of in tune with the natural world. Even when he was a baby, he would be comforted just by being carried outside to the deck, so he could look around. He has a strong sense of the rhythm of nature. Things die. Other things are born. Predators hunt and their prey give up their lives.
Given how he feels about the natural order of the world (especially about predators and prey), I asked why this bird getting hurt and dying was so different from, say, a wolf taking down a sick caribou. He said it was the fence. Something made by people caused the bird harm.
I don't think John is a radical environmentalist who hates people and the things that people make. He loves music, for instance, and that's made by people. I think it's more that this bird getting hurt was just unnatural. Wolves do kill caribou, but they target the sick and injured, thinning out the herd. Good people dying, young people getting sick -- those things aren't natural.
It's hard knowing how to explain things to kids, especially when I can't explain them to myself. Most kids just can't accept "It happened because that's just the way things happen sometimes." I think John can accept that kind of fatalism, that stuff just happens sometimes, as long as it fits into his view of the world. I guess most adults have a hard time with that answer, too, but we're better at faking it and moving on.
What's really interesting about it all is that it shows me just how different John and I view the world. As much as he understands the natural rhythm of the world, and how inevitable change is, he also wants some things to just stay frozen and unchanged, like a diorama in a museum. I'm the opposite. I don't want things to stay still. I get up early wondering what the new day will bring. Watching and waiting is hard for me. And the hardest thing for me about having cancer is thinking about how it cuts off options, limits opportunities for change. I may write about that some day. I'm still kind of working it all out for myself.
We called Jen the bird rehabitator the next day and left a message. I assume she has a day job and wasn't home. We left another message that night.
She never did call back with news about the injured bird. John stopped asking. He's good about moving on, accepting change, at least on the surface, but I know he's probably still thinking about that bird.
Friday, July 25, 2008
The results for the Bastille Day 4 miler have been posted. Mary and I finished in 40:47, and came in 132nd out of 165 runners. (And I still maintain that Mary could have finished much faster if she wasn't being so nice.) Lee finished in 36:13 (115th place).
My finish wasn't too bad, until you look at the guy who came in 131st, 25 seconds ahead of me: the second place finisher in the 70-79 year old age group. The second place finisher. The winner of that division ran in just over 30 minutes. Good gravy. Serious runners in DC.
The good news, though, is that I finished first among all runners from Connecticut, so that was pretty cool.
Our old friend Jon Lester, Red Sox pitcher and NHL survivor, is doing great since he threw his no hitter this year. In an earlier draft of this post, I told you just how great, but now I'm afraid to give you details because I don't want to jinx him. Look up his numbers on the Red Sox stats site on your own.
Yes, I was the only runner from Connecticut. Blah blah blah. I was still first.
Regarding my brother's awesome legs, chiseled from miles of bike riding, and now good enough to show off a kilt: Here's a story about a postal worker who's lobbying the US Postal Service to allow kilts as part of their official uniform. I love that his older son (17) doesn't want to talk about it, and his younger son (15) wants to wear a kilt to school. Sounds way too familiar, especially since we brought the kids shopping for school uniforms yesterday, and John kept holding plaid skirts in front of him and doing an Irish step dance. He cracks himself up, which I totally respect.
Rumor has it, by the way, that my brother rode about 85 miles last weekend in preparation for the Pan Mass Challenge August 2 and 3. He'll be raising money for the Dana-Farber Cancer Institute, funding cancer research and helping kids with cancer. He's darn close to his $5000 fundraising goal. Visit his PMC profile site and kick in a little more.
I'll bet for enough money, he'd post a picture of himself in a kilt.
Wednesday, July 23, 2008
I was at work when he called, so he talked to Isabel. He said some nodes are getting a little bigger, but some nodes "seem to be shrinking on their own."
(Now, we know not to get too excited about nodes shrinking on their own. That's all part of the deal with follicular lymphoma -- waxing and waning, getting bigger sometimes and smaller sometimes. There have been cases of spontaneous self-remission, where the disease goes away on its own, but it always comes back later. Not that I'd say No to a little remission....)
So for now, I'm still stable. I meet with him Dr. R next Wednesday for a physical exam, bloodwork, and to discuss the results the specifics of the CT scan, like what size the various nodes are. I need those numbers, since my Lymph Node Fantasy League standings are all based on statistics like that. I'd get double points if there was spleen involvement, but I'd just as soon give up the points.
No, I'm not really in a Lymph Node Fantasy League. That's sick.
But here's a fantasy league some of you might really love: Fantasy Congress! It works like fantasy baseball and football, but instead of picking, say, a pitcher and getting points each time he gets a strikeout or a win, you pick a member of Congress, and you get points for (this is from their web site):
Legislative Success- How well a Member of Congress moves his or her bills through the legislative process. Check out our Legislative Tutorial for more info.
News- Receiving noteworthy nationall news can indicate that an MC is working hard to achieve goals valued by the country. Additionally, coverage by local media can indicate that legislators are working on issues important to their constitutents.
Maverick Votes- It takes guts to stand as an individual against the party. If the vote is tight and your MC breaks ranks, they score higher in this category.
Voting Attendance- Ever since elementary school, absences have counted against you. Members of Congress are also evaluated on whether they show up to do their job.
How awesome is that?! On my Senate team, I have Daniel Akaka (Dem - Hawaii) because I love to say his last name; Herb Kohl (Dem -Wisc) because I know so many people who love to shop at Kohl's; and Joe Biden (Dem-Delaware) because I think he's losing his mind and he gets me Maverick and news points. I lost out on McCain for the Senior Senator draft, so I'm not drafting any Republicans -- they're all afraid to speak out right now, so they're getting few points except for attendance. I'll revisit that decision around convention time, and see if any are on the waiver wire.
Monday, July 21, 2008
It was a CT scan, not a CT/PET scan. (So it will identify strnage spots, but won't identify them as cancerous.) I don't know if that was a mistake by the oncologist's office in scheduling it, or if I'm just getting CT's now (which would make sense -- less radiation if I'm going to do this frequently). I know people in the support group who get CT scans and not PET scans sometimes, so it's probably normal procedure. I didn't notice until I looked over my instructions again last night.
Anyway, if you've been reading for a while, you know the drill. I still had to have the Barium milkshake, but the scan itself was 5 minutes long (not 30 minutes), so my shoulders didn't fall asleep, which was nice.
They're pretty good about getting results to me quickly, so I'll have more on this in a few days, probably.
Sunday, July 20, 2008
Tuesday, July 15, 2008
Tonight is the Major League Baseball All-Star game.
So consider this is an All-Star edition of Lympho Bob.
First off: a running (racing) update.
Last night, I ran in the Bastille Day 4 Miler in Washington, DC, accompanied by Isabel's brother Lee and his wife Mary. Very cool race. The course was beautiful -- along the C & O canal in DC.
We didn't kill ourselves. Mary and I finished in just over 40 minutes; Lee was a few minutes faster. Pretty good, considering the heat (abou 80 degrees), the time of day (I never, ever run in the evening) and the fact that I've run 4 miles about three times in the last year. (I was up to about 8 miles in spring 2007, before the bronchitis, pneumonia, NHL, etc. -- you've heard that story.)
I'll try to get pictures up sometime when we get back. But we were definitely all-stars.
(When we planned our trip a few months ago, I looked up road races in MD/VA/DC, and found the Bastille Day race. Knowing Lee and Mary are runners, and knowing Lee spent time in France, speaks fluent French, and loves french fries, how could I resist? Plus, it gives me the excuse to add a link to this clip from Mel Brooks' History of the World, where the French Revolution is planned at Madame DeFarge's.
It's good to be the All Star.....)
A few baseball-related links, in honor of the All-Star game:
A story from the New York Times about someone putting about a Green Monster wall, just like at Fenway, for Wiffle Ball play. Neighbors objected. Things got out of hand. There were lawyers involved....
It happened in Greenwhich, CT. New York Yankee territory. If it was in Hartford County, where they love the Sox, no one would have cared.....
You might have seen this: last week, a minor league baseball manager wanted to let the umpire know that his calls stink. His argument was, you could say, a multimedia presentation.
Finally, I forgot to write about this a couple of weeks ago when it happened. We went to see a minor league baseball game -- the Bridgeport Bluefish -- and had a good time. We highly recommend minor league baseball. Players aren't as good, but they're hungrier. Plus, it's cheaper, and provides more entertainment.
Typical entertainment involves between-inning promotions, games, stunts, whatever. We saw the Bluefish on a Wednesday, and I was chosen to participate in Wild Money Wednesday. Every Wednesday home game, they have a different kind of contest between innings, and the winner gets $500. One week, for example, it was a poker tournament.
The contest I was asked to be in was a 32 person Rock-Paper-Scissors tournament. Best two-out-of-three for each round; winer moves on.
If you think Rock-Paper-Scissors is not a big deal, then I suggest you visit the web site for the World RPS Society, the governing body for international Rock-Paper-Scissors tournaments. Is it a joke? Maybe. But they sponsor a $50,000 tournament, so you decide.
Some of the people chosen for the Bluefish tournament were, if not World RPS Society members, at least really into Rock-Paper-Scissors. The kids helped me with my strategy -- they said to go with Rock first, because at school, everyone puts down scissors first.
My first opponent didn't show up, so I got a bye into round 2. The second round, my opponent was very serious. He didn't look me in the eye when we shook hands. He beat me 2-0, with one tie. So much for the kids' strategic assistance. My RPS career was over before it really had a chance to blossom.
But I'm still an All-Star.
Thursday, July 10, 2008
As a writer and teacher, I know that great ideas don't just pop out of thin air -- they come from previous work that others have done, conversations that sometimes have nothing to do with the topic at hand, and wide reading. I admire researchers who make those connections between things that seem unrelated.
(And I love students who are a little "out there," and make connections between things that seem completely unconnected. Not downright crazy, just a little "off." They offer new perspectives on things. It's fun to try to follow their thoughts and see how they made the connections that they made, and then to help them explain the connections to other people).
Anyway, here's some recent cancer research that comes from people whose writing teachers probably thought they were a little "off."
The first article is called "Cooking Cancer with Nanotechnology." Very cool stuff. The research builds on previous research with monoclonal antobodies like Rituxin, the NHLer's best friend. I wrote about something similar before. In this treatment, tiny carbon tubes are coated with the antibody. The antibody seeks out and attaches itself to the cancer cells, and is then heated by infrared light (like the kind used in remote controls). The light, which has little effect on normal tissue, heats the attached carbon tune, which kills the cancer cell.
The next article is called "Accidental Fungus Leads to Promising Cancer Drug." The title about says it all. The article describes a type of treatment called angiogenesis therapy. It's based on the idea that if you cut off the blood supply for a tumor, you can kill it off. The drug described in the article was created accidentally by some angiogenesis researchers who were trying to grow blood vessel cells in their lab. A fungus infected the samples, and they saw that it had properties that inhibited blood vessel growth. They've been trying to perfect the drug for twenty years, and they think they have it right now -- minimal side effects.
Yet another: "Chemotherapy Resistance Overcome In The Lab Using Re-Purposed Malaysian Folk Medication" This treatment is a little less traditional in its orgins, but promising. Plus, one of the principle researchers is from Boston University. It describes a drug that is used to re-sensitize tumors to chemotherapy. Some tumors learn to fight off the effects of chemo, and this drug lowers their resistance so the chemo can start working again. This group of researchers focuses on finding new uses for previously known drugs (re-purposing), and are fond of playing with natural cures. This one comes from folk medicine used for generations in Malaysia, though not previously used for cancer treatment. Very interesting stuff.
This last one has the very unspecific title "Cancer Cure in Mice to be Tested in Humans", though it probably gnerated the most excitement in my online support group. It works sort of like a stem cell transplant, in which undeveloped blood cells are injected into cancer patients so they grow into new, cancer-free blood cells. This treatment also involves injecting donated blood cells into cancer patients, but they are specific, mature white blood cells called granulocytes. White blood cells are responsible for cleaning up bacteria, viruses, and other bad things from the blood, and when they're done cleaning up, they die. (Lymphoma involves white blood cells that don't know how to die, so they keep cleaning up stuff that doesn't need to be cleaned, which causes problems.) The granulocytes have a way of cleaning up cancer cells. Some speculate that we all "have cancer," in a sense -- abnormal cells are always being made in our bodies -- but granulocytes clean them up before they develop into tumors. People with blood cancers can't clean up the abnormal cells. Apparently, injecting granulocytes from another source can overcome that resistance.
As the article discusses, this approach has worked very well in experiments with mice, and may be tested on humans soon.
We Follicular NHLers love these kinds of research, because they give us more vines to swing from (if you remember the Tarzan comparison). We're especially excited about the non-chemotherapy approaches: if we do need to continue trying new treatments because the lymphoma keeps returning, the less toxic therapies take less of a toll on our bodies.
So when you're done hugging whatever Canadian you dug up last week, find someone with a slightly weird perspective on life and give him or her a squeeze, too.
I'll be away all next week, so postings will be limited. I may have something interesting to tell you by mid-week, so look then, but don't panic if I'm not posting. Soon after I get back, I'll have my next PET/CT scan, with a follow-up visit with Dr. R a week after that, so I'll have more updates in a couple of weeks.
Tuesday, July 8, 2008
Friday, July 4, 2008
Wednesday, July 2, 2008
Given that I have three award-winning musicians for children, you might be surprised to know that I don't play an instrument (except for the velvet tornado that is my voice). In fact, I never even learned to read music.
But then I saw an old Partridge Family episode, and it just seemed like it would great fun to have a family band. Painting an old school bus groovy colors. Playing wacky pranks on our uptight band manager. Traveling around the country, singing songs with the wife and kids.
Seriously, about a year ago, I decided that it would be kind of cool to learn an instrument, and after some discussion with the children (who nixed anything involving heavy breathing or excessive banging, and settled on bass, since there are only four strings to deal with, or tambourine, because they're so darn funny), we settled on guitar. My plan was start lessons in the fall, when I had hoped to be on sabbatical, but that wasn't to be. Lately, I've been King of Things-Aren't-Really-Going-As-Planned, so I decided I'd start in the summer. Today was the day.
I'm taking lessons at the music school where the kids take piano. The owner of the school teaches piano to Catherine (and, for the summer, John), and also teaches guitar and drums. For my first 30 minute lesson, I learned proper hand positioning and the basic scale, and focused on the high E string. I have lots to practice before we meet again next Wednesday.
She said I did an excellent job, and she can tell where my children get their musical talent from.
(And yes, I recognize that she's hoping, in this economy, that I'll come back next week. I'm OK with that. As long as she keeps up with the flattery.)
Now, I think this is special because it's probably the first new thing I've tried to learn in 10 or 15 years. I've learned things in that time -- it's kind of a requirement of the whole professor gig to keep learning things -- but this is the first new thing I've learned in a long time. Learning, say, MS PowerPoint isn't really new if you're already really good at MS Word. For me, guitar is almost completely new, right down to having to learn which little dots and lines means which notes on the paper thingy.
So that's kind of exciting. When I learned in December that I wasn't going to get my sabbatical for the fall, I starting thinking I wouldn't bother with the guitar lessons. Two weeks later, I got the NHL diagnosis. Priorities change. Different things start to matter.
So to celebrate my awesomeness, I invite you to check out Rolling Stone Magazine's list of the 100 greatest guitar songs of all time. Each song listed has an audio clip and video. Feel free to debate in the comments.
Tuesday, July 1, 2008
Given my Canadian heritage, I couldn't let the day go by without acknowledgement.
I strongly suggest you find yourself a Canadian and give him or her a big kiss. (French kiss or English kiss -- whatever you like.)
While you're waiting for a Canadian to come along, enjoy this list of the Top Ten Myths about Canadians, written by a very defensive Canadian for ignorant Americans; a list of famous inventions by Canadians; and this list of famous people who were born in Canada (which is especially cool because it comes from BabyNamer.com, in case you wanted to name your kid after a famous Canadian, so it lets you see the origin of the name, for example, say you wanted to name your kid after Canadian actress and role model Pamela Anderson, you could find out that Pamela is from the Greek meaning "all sweetness," that it was the 454th most popular girl's name from 2000-2003, and that it was invented by the poet Sir Philip Sidney).
Happy Canada Day! Kiss a Canadian!