John's Oboe

John had his oboe recital today. He did a fantastic job. You can watch and listen below.

The oboe is not an easy instrument to play. It's a "double reed" instrument, which means it has two reeds that are kind of stuck together with a tiny hole between them to blow into. But when you do it right, it makes a really cool sound.

John is able to make that sound. In fact, we've had several teachers and advanced oboe players tell us what a great sound he gets out of the instrument, even though he's been playing for less than a year. We talked to someone who repairs oboes who told us that he thinks it's the only instrument that chooses the player, rather than the player choosing the instrument. Joh  has wanted to play it since he was about five.

Anyway, we're very proud of our oboe player, and we look forward to many years of listening to his beautiful music,

Jon Lester

I was going to hold off running this video until the Red Sox had climbed their way back to .500, but I'm going to just show it now, for the reasons I'll explain below.

It's a brief interview with Jon Lester, Red Sox pitcher and NHL survivor. Lester touches on a couple of NHL-related topics, including how he has now embraced the label of NHL Survivor; when he was finished with chemo, he wanted to be known as Jon Lester the Pitcher, not Jon Lester the cancer survivor. He didn't want cancer to define him, which is understandable, given that he was 22 years old.. I can see how acceoting, and even embracing that label comes with time and distance, and it's nice that he's more willing to talk about his experience now. He also offers some advice for Lymphoma patients (and one would assume, cancer patients of all kinds): keep living your life.

Here's the link for the interview (can't get my "link" button to work, but this should take you there):
http://www.dailymotion.com/video/xi35ay_mlb-on-fox-lester-loving-life_sport

Lester has a special place in my heart, and not just because he's a Red Sox pitcher. When we told the kids about my diagnosis, I mentioned to Peter that he'd already heard about NHL before, and that it was what Jon Lester had been diagnosed with. At that point, Lester had been treated and was back with the team, having pitched in the World Series just a few months before. When I said that, Peter's whole body relaxed, and I think knowing Lester was OK has helped him cope with all of this.

And today is Peter's birthday, so a little Lester is fitting. Happy birthday Peter. Enjoy yourself. (But not too much.)

Awkward Easter

If you've never wasted time on the website Awkward Family Photos, I highly recommend it. But make sure you have a good hour to waste before you go there. It's addictive. Someone at The Huffington Post put together a compilation of awkward Easter photos from AFP that's pretty funny, and gives you a taste of what the site is about. Plus, Easter photos seem timely, if a day late.

Awkward Family Photos has some pretty scary and very funny photos. It's one of those great sites that it basically created by its users -- people send in strange photos of their families, and others comment on them.

Isabel and I were wasting time on it one night a couple of months ago, and as we were clicking through pictures, Isabel stopped and said, "Wait -- go back -- is that....?" and then gave the name of someone we know from work. Indeed, it was the person she thought it was. The photo in question was a family portrait; most of the family was in a standard pose, but one family member was about four feet away from the others and obviously pissed off. Given what we know about the family, we decided that one of the kids, the somewhat rebellious oldest one, had sent in the picture without anyone else in the family knowing about it. Given the family, there's no way they would have allowed it if they had known.

We couldn't keep it to ourselves, but we also couldn't come right out and ask the person if they knew about the photo, and we couldn't spread it around, lest it got back to the co-worker. So we asked two other people what to do -- they also knew the co-worker and we knew they'd be discreet. They thought it was very funny, and one suggested we just drop the words "awkward" and "family" and "photos" in casual conversation the next time we saw the co-worker.

We never did find out if our colleague knew about it or not. And we're still afraid to ask.

All of this is, of course, a roundabout way of hoping you had a Happy Easter, Passover, or just plain good weekend.

Pulitzer Prize

This year's Pulitzer Prize for General Nonfiction was awarded this week to Siddartha Mukherjee for Emperor of All Maladies: A Biography of Cancer.

I wrote about this book in the fall. I hadn't read it at that point, and just wrote about how fascinating it looked. I asked my wife to buy it for me for Christmas. It's kind of a non-traditional gift request for a cancer patient, I'll admit. Isabel didn't buy it for me -- probably blocked it out, and who can blame her? -- and she still feels a little guilty about it.

I did end up taking it out of the library, but it was so new that I only had 2 weeks to look at it before I had to return it, and I got through maybe a third of it. It was fascinating. I can tell you that the prologue completely sucked me in. You can read it yourself here; scroll down for the prologue reprint, and then go back to the top for a podcast interview with Mukherjee from Fresh Air. Mukherjee can write -- not just about the science behind cancer, but about the people behind cancer -- patients and doctors -- as well. The story in the prologue about Carla Reed started to stir up some unpleasant feelings in my gut, thinking about the kind of uncertainty that comes right after a diagnosis.  Not fun, but I kept on reading. It's a really compelling book.

The Pulitzer Prize is a very big deal, and the citation for the award calls the book "an elegant inquiry, at once clinical and personal, into the long history of an insidious disease that, despite treatment breakthroughs, still bedevils medical science."


I give it two thumbs up (or maybe two lymph nodes up?) and look forwrad to reading the rest of it this summer. About as appropriate for beach reading as it is for a Christmas gift, but I'm going to do it anyway.

More Nanotechnology

I've written before about nanotechnology: the use of really, really (really) tiny particles injected into cancer patientts for various reasons in an attempt to kill off cancer cells. (I still really like the one that uses gold particles. You'll have to look that one up in the Lympho Bob archives if you want more information).

One very promising use of nanotechnology that I've read (and written) about has been different attempts to deliver chemotherapy drugs directly to cancer cells. It works kind of like RadioImmunoTherapy: the tiny little nanoparticles are coated with or otherwise contain the chemo drug, and are developed to seek out and attach to the cancer cells and deliver their payload. This way, the chemo isn't just released and allowed to kill off healthy cells, too: the nanoparticle is only delivered to the cancer cells. In theory, this means less toxicity, fewer side effects, greater effectiveness.

As far as I know, there isn't a delivery system like this that has been approved yet, at least not for NHL. But already, some researchers are finding ways to improve upon the models that are bouncing around out there. Science Daily reports on some smart people in new Mexico who have redesigned the nanoparticles into honeycomb shapes, which allow for more chemo drugs to be stored in the crevices. (Imagine it as a kind of nightmarish English Muffin, but instead of nooks and crannies holding melted butter, they hold cyclophosphamide, vincristine, and doxorubicin. Which is kind of funny, in a sick way, if you think about it. You'd need rubber gloves just to eat breakfast.)

Anyway, the Science Daily article is called "Nanoparticles With Honeycomb Cavities Containing Drugs Blast Cancer Cells," and it describes how all of this would work. The nanoparticle would have an increased surface area with all of those crevices, and when that's combined with a better way of attracting cancer cells, the result is what they call a "million-fold improvement in efficiency" over other methods that do something similar, but without the nanoparticles.

You can read more about the details in the article. It's still being tested in cells, and will soon be tested on mice, and may be ready for commercial use in as few as 5 years. Nothing in there about lymphoma, specifically, but it certainly seems like the kind of approach that would work well for a systemic cancer like lymphoma, where the cells need to be hunted down in the blood.

Daffodils

Last fall, Catherine and I planted some bulbs -- daffodils in the back yard, crocuses on the front lawn.

The crocuses took forever to come up. Just as our neighbors' flowers are starting to fade, ours have finally managed to push their way up. Two white ones, the hint of a purple one, and the long spikey leaves of about ten more showing through the grass. They've given a brave effort. Very inspiring.

The daffodils, on the other hand, have done just what they're supposed to do, and started to show up even before all the snow was melted. They've in full bloom now -- combinations of white, yellow, and a few orange centers.

Daffodils are, of course, a symbol of hope. The American Cancer Society uses them to thank people who donate. Those crocuses, I guess, are a symbol of perseverance. Nice combination, those two: courage for now and for the future.

Because sometimes we need it.

Burning Questions?

Here's a link to an interesting slide show from Michele Ghielmini, from the Oncology Institute of Southern Switzerland, called "Update on Lymphoma and Myeloma 2011." I don't know much about Ghielmini, and I'm not sure why this slideshow is being posted, though there's an ad on the last slide for a European lymphoma conference in June, so I'm assuming that Ghielmini is presenting this slideshow there. The slides are organized around a series of "burning questions" that are being deabted and researched right now, with one question focusing on each of several different lymphomas/blood malignancies.

I found the burning question for Follicular NHL especially interesting: Watch and Wait or R-CHOP?

The slides present a bunch of information, and I assume Ghielmini will explain and comment on them during the conference, but my first reaction to that question was, "THOSE are my ONLY two choices?"

Looking at the slides, I think this is kind of a false question, and I'm guessing Ghielmini doesn't mean to answer it, exactly, at least as it is presented. The slides actually discuss a whole lot of fNHL research from the last few years, comparing, in various combinations, W & W, single agent Rituxan, R-CHOP, Bendamustine/Treanda, and a few other established and newer treatments. The second-to-last slide for the Follicular section (slide #31) clearly shows that Bendamustine is a superior choice, if you're looking only at statistics. That wasn't even included in the burning question.

It's the last slide in the section (#32) that brings it all together. So I'm guessing the answer to the burning question of "Watch and Wait or R-CHOP?" is probably something like "Neither. Or either. Or both. Or something else." In other words, if I was someone looking for a definite answer as to what the ideal first-line treatment should be, I'm not going to find the answer in this slide show.

The final slide says to consider prognosis (grade, stage, and FLIPI score), factor in symptoms (none to life-threatening) and weigh the patient's priority (long remission vs management of symptoms) and then consider Watching and waiting, a "soft" treatment like Rituxan, RIT, or Treanda, or an "intensive" treatment (like CVP or CHOP).

So, it's an interesting slide show, but in the end, we're really no closer to figuring out the best course of action. (In fact, the last slide is dated 2009. Nothing much has changed in two years.) As the last slide suggests, it really is an individual choice at this point in the evolution of fNHL treatment.

The potential good news in all of this is that there are a lot more treatments that are likely to become available in in the next 5 years. The potential bad news is that maybe none of them are going to be the answer to this burning question. But then, the good news is, that means more potential treatments than we have now, which is good when you consider that the dominent strategy now in dealing with Follicular NHL seems to be to keep looking toward the next treatment while hoping the last one keeps working. More arrows in the quiver, as Dr. C, the specialist I saw so long ago, would say.

Still lots of reason for hope.

Oh, Yes

Once again, I am ready to proclaim myself The Healthiest Darn Cancer Patient in Town.

I had my annual physical a few weeks ago (no mention of my having Chronic Pulimary Disease then, unless I missed something), and I finally managed to find some time for the blood test last weekend. (And I have to say, the people at Quest really stink at taking blood. Two years in a row, I've ended up with a bruise on my arm the size of a saucer. When I get blood taken at Dr. R's office, the phlebotomists there don't even leave a mark. It's like they're all former CIA assassins -- no entry point, no evidence that any one was ever there. They're amazing.)

Well, I got my blood test results today.

Complete Blood Count = normal
Chemistries = normal
(Those two things are doubly good because Dr. R checks them, too, for signs that there are cancery problems going on. So I'm good there, it would seem.)

Thyroid = normal
PSA = normal
Vitamin D = normal
(Woo hoo! I've been working on my Vitamin D levels for over a year. There's all kinds of stuff out there about the relationship between Vitamin D and lymphoma, and some of it conflicts with other parts of it, but I've read enough to think I need a high Vitamin D level for my overall health. So this is good news.)

HDL (good cholesterol, should be over 40) = 47
LDL (bad cholesterol, should be under 130) = 121
Triglycerides (should be under 150) = 78
Total cholesterol (should be under 200)  = 184

The bottom line is, I freakin' rock. I credit it all to running and olive oil.

Damn, I'm good.

Living My Best Life

Got some strange mail today.

Every few months, our health insurance company sends a newsletter to our son John called "Living Your Best Life with Asthma." He has some fairly mild asthma, and the newsletter gives him helpful tips like "Leave the windows closed if the pollen is bad," and usually includes a nice recipe, like this month's for Pumpkin Pancakes. He gets the newsletter because, of course, he has asthma.

His newsletter came yesterday. In today's mail, I got a newsletter of my own. It's called "Living Your Best Life with COPD."

Now, I have no idea what COPD is, and the newsletter never identified what COPD is. It did give me a hint: in the article called "Make Each Day Full of Play," I am encouraged to exercise ("Play with your kids. Build a snowman...Join a bowling league...") Apparently, regular exercise will help my body use oxygen better.

I asked my wife if she knew what COPD was. She looked at my newsletter. "No idea," she said. "Do you have any symptoms?"

"Is cancer a symptom?" I asked.

"I don't think so," she said.

Now we were getting a little concerned. Do I have some disease that my health insurance company knows about, that no one bothered to tell me about?

Isabel saw that there was a toll-free number on the newsletter. "Nurses are available 24 hours a day to answer your questions," it said. Though it would have been easier to just Google COPD, I decided to call the nurse. She was probably bored and lonely, getting stuck with the Friday night shift. She's probably new to the job.

So I called the number, and I made my way through a series of menus. They made this whole toll-free number sound really serious, like I shouldn't be wasting someone's time with a stupid question like "What is COPD?" I finally got an option to put in a 4 digit code that would tell me what COPD is. But then it said I needed to speak to a nurse to get the code. So now I was stuck with asking someone a stupid question.
The nurse answered by saying, "Hello, my name is XXX, and I'm speaking with...with....um....sorry, I lost the screen I was looking at...."

"That's OK," I said. "I just had a quick question. What exactly is COPD?" I tried to sound a little worried so the whole thing didn't seem so stupid.

"COPD...is...wait...I lost my screen again..."

This was getting silly. I really wanted to hang up, but now I felt even worse for the new nurse with the sucky Friday night shift who had a bad crappy computer, and I thought hanging up would just make her feel worse about her situation than she probably already did.

"OK...COPD is...Chronic...Obstructive....Pulminary....I'm guessing 'Disease'....."

"That's great. Thanks--"

"And can I get your name, please?"

So now I need to spell my name for her, and she's trying to get my birthdate, and she keeps losing her screen because she's new and they gave her a lousy shift and a crappy computer and I tell her that my son is calling on the other line and I really need to go and pick him up and I'm so sorry and she says that's OK and she sounds just a little sad and WAIT A MINUTE -- PULMINARY DISEASE?

So I hang up and do what I should have done, which is to Google COPD, and I find out that it's something really bad having to do with chronic bronchitis and emphysema, and it usually shows up in people who have been smoking unfiltered Camels for 40 years.

So I guess there's still the possibility that I have COPD and my doctor just forgot to tell me. Either that, or I just got put on the wrong mailing list by mistake. I decide that I'm going to talk to my doctor Tuesday. I'll run the 3 miles to her office, since I usually run 3 miles on Tuesday, Thursday, and Saturday, and I'll ask her if I have horrible lungs and breathing problems that restrict me to things like bowling and building snowmen and not running three miles three days a week.

I'll let you know how it turns out. If I bother.

What Not to Say

I'm in one of those really busy periods at work right now -- it always happens at the end of the spring semester, when everyone is scrambling to finish things up before summer begins and everyone leaves to work on their novels. So my posting has been less frequent than I would like. Sorry about that. Everything is OK. Better than OK, really -- I not only have a job that keeps me busy, I enjoy the work, and I'm healthy enough to do it.

Here's a link to another one of those "What Not to Say to a Cancer Patient" articles called, appropriately enough, "What Not to Say to a Cancer Patient," published yesterday on the Dallas Morning News website. It's got some more of those stories about people saying things without thinking. It quotes Dr. Wendy Harpham, an NHL survivor, who writes a fantastic blog on cancer patients' emotional issues, particularly cancer survivors. If I haven't linked to it before, here it is. She's great.

I find the whole subject of "mis-speaking" fascinating, partly because I'm amazed at some of things people say, but more because, given what I do for a living, I find it so much fun to try to figure out what possible good someone could be trying to do when they say something stupid. Of course, this assumes that they really are trying to do something good.

But I'm that kind of guy -- always looking on the bright side of life.

Jimmy V

I've been sitting on the couch with Isabel and Peter, watching VCU and Butler in the Final Four Battle of the Underdogs, and I think it's kind of cool that one of them was guaranteed a spot in the final. Looks like it's going to be Butler. Go Bulldogs. Can't say, as a Louisville alum, that I'm all that excited about either Kentucky or UConn this year.

Anyway, watching The Underdogs made me think of Jimmy V.

I wrote about him a while ago, on one of my special anniversaries, though he's certainly well-known without me writing about him. Jim Valvano is probably best remembered. The first was coaching the North Carolina State men's basketball team to an NCAA championship in 1983. His team was the heavy underdog -- like Butler will be -- and the video of him running around, looking fo someone to hug, gets shown every year at tournament time.

But the second thing he was most famous for was a speech he gave at the ESPY awards ten years later, when he recieved the Arthur Ashe Award for Courage. In his speech, he announced the creation of The V Foundation, which funds cancer research.

The speech kills me every time. It shows a man who has no illusions about where he is and what he wants, and who is clearly prepared to fight for it. And he gives some excellent advice about day-to-day living: make sure every day that you try to laugh, to cry, and to think. Not as hard as it might seem. It is, really, about living your life fully.

Here's the speech. Watch and remember what he has to say.