Happy Halloween

Happy Halloween.

Looks like we're going to have a pleasant night tonight -- pretty warm temperatures. It reminds us a little of the warm Halloween night when Peter was two and a half. It was so warm that after we took Peter around to a few houses, we sat on the front porch to give out candy. Peter hadn't ever had "candy," like an actual chocolate bar, though he'd had plenty of cake and cookies in his short life. He asked us if he could have some candy. We had planned to just eat all of his candy ourselves, but we gave him a KitKat, thinking it was basically a cookie.

Naturally, he loved it. And craved more. "More candies?" he asked us, his eyes flickering with the need for concentrated sugar as he tugged nervously at his yellow firefighter's coat like a junkie pulling at his soiled t-shirt. We told him that one was plenty.

So he rolled on the front lawn, moaning, "More candies! More candies!"

It was like something out of One Flew Over the Cuckoo's Nest.

Anyway, here are the kids' costumes this year.

Catherine as Cleopatra. She keeps asking us about the real Cleopatra, but there's darn little we can actually tell her. The affairs with famous Romans don't seem right, and the whole suicide-by-sanke thing will give her nightmares. We just tell her Cleopatra was beautiful, ands that seems to satisfy her.

John is the Travelocity Gnome.

I still don't get the whole Gnome obsession, but he cracks up every time he even talks about it -- enough that he tries to quote a Travelocity commercial, but can't quite get the words out through the laughter.

He cracks himself up, which I totally respect.

Peter is just kind of carrying his own head around.

He's probably not going to actually wear this tonight, since it's a little hard to hold both one's own head and a full bag of candy. He wore it to a Halloween dance last weekend, and won first prize for Most Original Costume.

Kind of a long way from the whole cute little firefighter thing....

Sweet Music

First, a musical update:

This past weekend, Peter played in the Southern Regional Band Honors Concert for Catholic schools in Connecticut. After his audition in September, he was awarded First Chair in alto sax, which basically means he was the best alto sax player in the band.

For this weekend's concert, First Chair was more of an honorary thing; sometimes it has more practical applications. In January, he'll audition for the State Symphonic Band. Two years ago, he was 16th Chair in the Symphonic Band -- a low chair, but pretty unheard of for a fifth grader to even make that band. Last year, he was 4th chair and just missed making State Jazz Band. This year, he's got a great shot at Jazz Band, and maybe at First Chair in Symphonic. He'd likely get a solo if he was First Chair, so that's his goal. (And if not, there's always next year...)

We're very proud of him.

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Musical update #2:

Lympho Bob has gone electric.

Bought myself a Les Paul in September. I still pluck the acoustic guitar occasionally, but the electric is more fun right now. Plus, everything sounds better with distortion. And even if I don't sound great, I look freakin' awesome.

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Third -- a shout out to Cliff Lee of the Phillies for the sweet music her threw last night.

Complete game, 10 strikeouts, no walks.

Not just because he's playing against the Yankees, but because his son was diagnosed with leukemia at 4 months old, and now Cliff Lee is a spokesperson for the Leukemia and Lymphoma Society. He's helped raise over $1 million in Philadelphia and Cleveland (where he used to play) for the LLS Light the Night walks.

His son is fine now, by the way.

Good luck, Cliff and your Phillies teammates.

Smilow

The Smilow Cancer Hospital at Yale officially opened for business yesterday morning. That's a very good thing (for me and many others).


They actually had the dedication last week. I didn't attend, so I don't know if it was like the Open House for the St. Raphael's Hospital satellite cancer center that opened a mile from my house last year. (Isabel and I wondered then about what an open house for a cancer center would involve, and joked that Chemo the Clown might show up and make balloon animal lymph nodes. We were close -- the local paper showed a picture of a CT Scan machine with balloons on it.)


All kidding aside, Smilow looks like a wonderful facility.


Yesterday, the New Haven Register had a nice article about the new Physician-in-Chief, Dr. Thomas Lynch. You'd certainly expect him to be at the forefront of cancer care, and he is. He's pushing two very important, realted things:


First, he wants to see more cancer patients participating in clinical trials. This is especially important for lymphoma patients -- there are so many promising lymphoma drugs in the pipeline that need to be tested on actual patients. Lynch says that only 3% of cancer patients participate in trials now; he'd like to see that go up to 20%. Participation in clinical trials was apparently a big issue at the Lymphoma and Myeloma International Conference this past weekend in New York (I'm looking for some abstracts from L & M, and I'll try to share some soon.)


The other thing that Dr. Lynch is pushing is Personalization, which is something that makes me happy. He thinks clinical trials and personalization strategies are connected: more people may participate in trials if they have a better understanding of their own cancer's micro-environment. He wants to have all patients at Smilow undergo this kind of testing to have that information available. That should make it easier to match patients with treatments still in trial.


I like the approach. The are already some cancers that use that kind of information to determine whether a treatment is likely to work before it is even given. Saves lots of time, money, and pain for everyone involved.

I'm officially a patient at Yale, having seen Dr. C there a long time ago, so I guess that means I'm a patient at Smilow, too. I'd be happy to know more about my own micro-environment.

In the meantime, Yale is one of the top 20 cancer hospitals in the country, and Smilow might actually move them up a little on the list. I'm in a good place....

Talking to Your Doctor

.....or Dancing with your doctor, as it were.

Someone alerted me to this video. It's a recent episode of the show Life (Part 2) on PBS. I've never seen it, but apparently it's sweekly show aimed at Baby Boomers.

The episode is called "Dancing with Doctors," and it focuses on having a good relationship with your doctor -- making sure you are getting the care that you need. A very important topic whether you have cancer or not. It's in three parts (30 minutes total). The first is a roundtable with doctors, and one is a former Hodgkin's Lymphoma patient, which adds a nice twist.

The second part is an interview with the actor Evan Handler. He's pretty recognizable -- played someone or other's bald, sweaty husband or lover or something on Sex and the City. He was diagnosed with a very aggressive leukemia when he was 24 and overcame it. He wrote a book about the experience called Time on Fire: My Comedy of Terrors.

Anyway, Handler basically survived because he was a self-centered jerk, and he decided that, given the kind of care he was receiving, the only way he was going to survive was to put himself first, not care whether anyone else survived instead of him, and see to it that he got what he needed.

I don't think I could be that aggressive, but I also have the "luxury" of having an indolent cancer, which has given me lots of time to think about what I need to do and what my options are. I hope I don't have to be a jerk, and I can let my knowledge of what's going on get me what I need.

Of course, I also have the luxury of having a good doctor who listens to me, which is pretty nice.

Anyway, Life (Part 2) looks like a pretty good show if you're a Baby Boomer, which I am not. (I'm an Gen Xer, which Peter has read about in the World Almanac for Kids; he thinks it's funny that Xers are "obsessed with pop culture." I don't know what he means by that. And fellow lymphoma survivor and Nodes of Gold recipent Mr. T says he pities the fool who thinks we're obsessed with pop culture.)

But Mr. T is a Boomer, and so is my brother, so they can both scan all of that advice on the PBS web site about "Fighting Agism" and whether getting old is funny. I may have cancer, but I'm still young.

Will and the Way

My friend Will sent this message to a bunch of us on a writing message list Monday. As you'll read, it was his birthday, and he's recovering from a recent liver transplant, brought on by liver cancer.

Will and I work together. He writes poetry, and writes about technology, and about J.D. Salinger, who wrote The Catcher in the Rye -- one of my favorite books by one of my favorite writers. And despite his being a Yankees fan, I still like Will a lot. We've unfortunately found more in common with one another lately -- like stories about nightmarish PET scans.


Anyway, Will's post pretty much speaks for itself:


I generally avoid my birthday and have avoided talking about health probs, but not today. As I turn 57, I want this list to know that I am three weeks into recovering from a liver transplant. It’s an amazing gift of life.


I was diagnosed with Primary Liver Cancer (hepatocellular carcinoma) on Dec 24 2008, operated on two weeks later, but too much cancer was found to remove surgically. My only chance of continuing my life was a transplant. In case you don’t know, there aren’t enough organs to cure folks in need of them and I’m hoping my experience will inspire us to donate our organs upon death. I feel as if I have added a new spirit to my soul because some 41 year old man from the Bronx had the kindness and love for others to become an organ donor. I had the benefit of the top docs at Mt. Sinai Hospital in NYC, a good healthcare plan, and a very supportive school, and I have the greatest wife in the world (and I’m not just saying that because I get lasagna and chocolate cake tonight).


The hardest part was waiting and knowing there are not enough organs for all those who need them—so if you haven’t done so already, PLEASE consider making yourself an organ donor. It’s a beautiful way to help others and I really feel that my donor’s spirit lives with mine now. I want to pass on the help he has given me even though I can never do as much for others as what he has done, but have to come out of my health privacy and even birthday shyness to let all the good folks I know that my experience has been incredibly life affirming.


At the end of chapter 12 in The Catcher in the Rye, Holden claims “people are always ruining things” but by the end of the book he learns that may not be true, and that at least he doesn’t have to become a person ruining things...we can help each other in a very powerful way by simply signing on as an organ donor. If I’m the first TP person you know, please try to understand why I think it’s so important to give life when you allow your organs to be used after your death. I know it sounds a bit strange and possibly morbid, but I feel so joyful and thankful that I believe if I share this good grace, others may do so as well.


With love and respect, Will

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I can no longer give blood, let alone donate an organ. So throw in an extra one for me when you sign the little card.

LRF

I have a confession to make.


....I have a Twitter account. I finally got to use "Lymphomaniac" as a handle, and I'm very excited about that. I can be tweeted at that address.


I have another confession.


....I haven't sent any tweets yet, and I don't really have any plans to.


If you don't know what Twitter is, it's a so-called micro-blogging service, but each "blog" entry is limited to 140 characters. I'm an English professor; I can't say "Good morning" in only 140 characters.


No, I need the wide-open, Kansas-prairie-like space of a blog, or a mega-blog, or whatever the opposite of a micro-blog might be, to flesh out the depths of my thoughts.


Anyway, in the couple of weeks since I've had the Twitter account (I'm using it for a research project), I've actually attracted a few followers, which I think is pretty funny, because I've offered nothing for them to follow except for the envy-producing name "Lymphomaniac."


One of my followers is the Lymphoma Research Foundation, a very cool organization that I've linked to a few times here, but never really highlighted (as far as I can remember).


LRF focuses on raising funds for lymphoma research and providing support for patients and caregivers. Some nice stuff on the site, including a series of videos and podcasts on different types of lymphoma (a video that I recently I linked to, focuisng on Follicular NHL, is up there). They also have a fantastic program called the Lymphoma Support Network, which connects new lymphoma patients with other patients, former patients, caregivers -- people who have been through it already. A very nice way of getting some support.


Finally, they have a sections called Stories of Hope, which features profiles of lymphoma patients who have fought and won their battles. One of the more recently posted profiles is of Betsy de Parry, whom I've writtten about before (she does the new series of podcasts for Patients Against Lymphoma). There are a couple of other familar faces there, too -- people I know from the support group (which is also a featured link on the LRF site).


This is one of those sites where you can click around for a while and keep finding new and interesting stuff. Highly recommended.


Tweet me about it if you visit and find something good. Just don't expect a response....

Homecoming 5k

Ran another 5k this morning. Decent finish -- 29:28 -- about what I've been running lately.


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The race is called the Bob Corda 5k, and it's part of Southern's homecoming festivities.I wasn't sure I was even going to run this one. They had been calling for nasty weather -- 40 degrees and rainy. Two friends dropped out Friday, thinking that getting up that early just wasn't worth it if they'd also be cold and wet.


But I stayed in, for one reason: last year's race was also cold, and it took place at 8:00 on the morning after Halloween. Small field, so I came in 3rd in my age group, and took home a $5 Dunkin' Donuts gift card for my trouble. I figured if the weather was nasty, I could take home another prize this year.


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We had a busy morning: John had a soccer game in Branford at 9:00, and Peter had band practice in West Haven at 9:30 (in the opposite direction). The race was in New Haven at 8:00. So Isabel took Catherine to John's game, and Peter came along with me as my Official Support Crew. His duties included taking pictures of me at the start and finish. I'm sure it's just coincidence that there are no real usable pictures of me running, but he did take several nice shots of attractive female undergraduates.


The race began and ended at the student center, so Peter's duties mostly consisted of buying something at the Dunkin' Donuts and listening to his iPod for a half hour and staying out of trouble.


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We had left home late, and arrived 15 minutes before the race started. My whole pre-run routine was thrown off. I had no time to listen to music, little time to warm up, and I forgot my Gatorade at home. I registered and tried to get warm (it was 38 degrees out at race time, but the rain held off.)


After I registered, I got my t-shirt. The woman giving them out asked Peter if he wanted one. "No thanks," he said. "Are you sure? They're free," she said. "No -- I'm good," he told her. "Peter," I said to him, "It's a free shirt--" he cut me off with "NO." We walked away from the table and asked why he was being that way. "I'm not wearing a shirt like that," he said.


Which is when I remembered that this year's homecoming theme is "A Fairy Tale Homecoming," and the shirt had a variation of the Princess Castle that served as the official logo.


OK, he's 12, and he's not much into princesses. We'll let the whole t-shirt thing go....


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As I was getting ready to line up at the start, a man walked by with his daughter. She was about 7 years old. They were both running in the race. I was thinking to myself, "Well, I can probably beat her, anyway," when Peter said to me, "I got 5 bucks that the kid beats you."

Ladies and gentlemen, how about a big hand for my "support crew"....


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I started out too fast, and had a whole bunch of people pass me, including two guys who were probably my age. But neither pulled out too far ahead -- maybe about 20 yards away from me.

About a half mile away from the finish is a nasty hill. Kills me every time. Just before the hill, I looked at my watch and thought, "I could finish this in under 28 minutes." Then the hill slowed me down. Considerably. After the hill, I thought, "I could finish this in under 29 minutes." Then I realized I had misremembered how much more running I still had to do, and I said to myself, "If I finish under 30, I'll be happy." I was just started to recover my breath from the hill.

I got to Founder's Gate, where you can start to see the finish line, and was trying to decide if I had enough left for one final kick to catch those other two 40-somethings in front of me, when I saw that they had gone off the course, taking a different (slightly shorter) path in front of the Arts Building. Obviously, this was their first time on the course, and obviously no one had guided them about where to go. So they still beat me, and probably won themselves DD gift cards in the process. It's an informal race -- no one was going to disqualify them.

And realistically, I probably wouldn't have caught them.


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Peter and I had a quick post-race breakfast, and then I had to change my clothes and get him to band practice. I might very well have come in third for the 40ish men, but I haven't gotten a phone call or e-mail yet telling me where to pick up my gift card, so I'm probably not getting one.

Which is fine. The race benefits a scholarship fund, so it's better that we had a nice-sized field this year. Besides, I only race against myself.


My time of 29:28 comes to 9 minutes and 29 seconds per mile. Once again, I say: Not bad for an old fat guy with cancer.

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By the way -- I beat that 7 year old girl.

By a lot.