Thursday, July 31, 2008

Birds and Birthdays

Yesterday was Catherine's 7th birthday. We managed to get a half-year membership at a pool club in town, so we spent much of the day there yesterday, ending the day with Mexican food and homemade ice cream cake. (Actually, we've been spending much of every day there for the last two weeks.) Catherine, as you know from the blog, is a young lady of many talents. For example, she swims like a fish. Yesterday, as part of a swim lesson, she did 8 laps, alternating between freestyle and backstroke. She's working on her breaststroke. The club has a swim team that competes in July against other local clubs. We're pretty sure she'll be on it next year.
She's also quite the singer, with a soft spot in her heart for Miley Cyrus/Hannah Montana. While she complains about it loudly, I know she loves that I know the words to many Miley/Hannah songs, and I impress her friends when I sing to them -- especially this one off Miley's new CD. (And all of U who luv Salena Gomez ova Miley, stop hatin!)

Catherine plans to be a star much like Hannah Montana some day. I've been helping with stage name suggestions. She rejected JoJo Idaho and Betty Connecticutty (Peter thought it sounded too much like a diner waitress), and went with her own creation: Morgan Oregon. Tom and Mary, you should feel honored.

Happy Birthday, Catherine.

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Last weekend, we finally managed to celebrate my mom's retirement officially with a trip to the Mystic Aquarium. Last summer, on a visit to Massachusetts, we all went to the New England Aquarium in Boston, and mom fell in love with the penguins, one in particular. The penguin exhibit there is very large (check out the still shot web cam), and there are a bunch of small sprinklers to keep the penguins cool. One penguin stood in front of one of the sprinklers for a good half hour, not letting any others come near it. It really cracked us up, especially mom.

So when mom retired, we signed her up for a "penguin encounter" at the Mystic Aquarium to share with her grandkids. It's an hour long. They learned about penguins from one of the penguin handlers, while one penguin walks around the room, nipping at them and "expelling" on the floor. But they also got to touch it and feel its heart beat. Here on the right is mom giving the penguin a little love.


Everyone seemed to enjoy it, especially John. Except for one part. When he sat down to pet the bird, it, well, "expelled" all over him. It had to be John, of course -- who else would have put up with penguin poop all over him? That's him to the left, holding up the paper towels he used to clean himself off with. The penguin's handler said she "never seen anything like it before."






So John's been having some serious bird adventures lately, neither of which has ended terribly positively. (But at least he's smiling in the picture.)

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And if you're still wondering why John feels so deeply for animals, take a few minutes to watch this.

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I know I'm expected to comment on the Manny Ramirez trade. I'll just say that it was time for him to go, and I think Jason Bay's bat will be adequate. While Bay hasn't been in the playoffs before, he also had the pressure of being the best hitter on a really lousy team, so maybe he'll settle in with Papi, Youk, Drew, and Lowell around him. I hope so, anyway.


If you don't follow any of this, don't worry about it. You don't live and die with the Red Sox, which is probably a good thing in the end.

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Finally, good luck to my brother as he pedals all those miles this weekend for the Pan Mass Challenge. You're awesome. Be sure to give us an update when you're all done.

Wednesday, July 30, 2008

Doctor Visit

Saw Dr. R this afternoon. He'd already given me the scan results over the phone, so there was nothing really new, just a few more details.

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

John and the Bird

I haven't written much about the kids lately that didn't involve bragging, but they're always in my thoughts, in terms of how they're dealing with my diagnosis. Every now and then, something comes up that brings the issue to the surface.

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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!"

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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.


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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.

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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

Follow-Ups

A few follow-ups to recent posts:


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.

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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.

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Yes, I was the only runner from Connecticut. Blah blah blah. I was still first.

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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

Scan Results

Dr. R called yesterday with the scan results -- everything is still stable.

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.

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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.

Have fun!

Monday, July 21, 2008

Had the Scan

Went in for the scan this morning.

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

Scan on Monday

Well, I know what I won't be getting for Christmas.

The James Brown auction at Christie's took place on the 17th. One of the big sellers was his medical bracelet, which had been thought to fetch a relatively paltry $300. It ended up going for $32, 500, purchased by Paul Shaffer, the band leader for David Letterman.
And that signed Snoop photo went for $825.
Read more here, or visit the Christie's site to see the prices for everything else.

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I was hoping to have a link to the official results for the 4 mile race on Monday, but it's not up yet. We do have a couple of pics, though:


To the left: Here we are before the race began, looking fresh and enthusiastic.

Below: Very close to the finish. Lee had actually already finished, and then came back and ran the last few hundred yards with us again. We're getting some encouragement from the kids.



The official results will have me finishing before Mary, but she let me pass her at the end, so she should really get the finish ahead of me. She could have gone way faster than she did, if her speaking full paragraphs (as opposed to my three or four word phrases through huffs and puffs) are any indication. I appreciated the company, though.

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Thanks to all the Maryland and Virginia folks who gave us such a great time last week. We had a blast. Can't wait to see you all again.

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Finally: I have my next scan on Monday.

I don't think there will be any major changes, but there's always that little bit of anxiety ("scanxiety," we call it in the support group) for the few days before. You start thinking, When I ran on Monday, I was breathing a little harder than usual. Just a new set of things to be allergic to down in DC? Or maybe hot summer/bad air quality? Or are some deeper nodes getting bigger in my chest and pushing on a lung?

Who knows? I can't worry about that.

A few weeks ago, a friend asked me how things were going. I told him I had the scan coming up. He said, "That must be really stressful."

Well, yes and no. Obviously, I'd love to have things be so stable that I'm one of the lucky few that won't need treatment for years. But I also know those are both lucky and few. The 10 or 20 year watch-and-waiters are, I'm guessing, the same 10-15% who somehow get their follicular NHL diagnosis when it's in stage 1. The rest of us catch it at stage 3 or 4, like me. The average watch and wait period is about 18 months. But many patients need treatment immediately -- sometimes fairly aggressive treatment.
My point is, I'm prepared for whatever happens with the next scan. I'm hoping, of course, that's it's still stable. But I'm ready to switch back into Fight Mode if I need to.
I won't have results until later in the week, and then I meet with Dr. R in about 10 days. I'll update you when I know something.
(And I'll send those race results when they finally get posted.)