Saturday, November 29, 2008
Other than that, we had a great Thanksgiving. The kids loved playing with their baby cousin, and with the new Sugar Gliders that arrived in the pockets of their Ohio cousins. I manged to go on a nice 4 or 5 mile run with Mary and Lee (my running partners for the DC road race in July) between our big brunch and our bigger dinner on Thursday. On Friday, we all went downtown to see the World War II Memorial, Lincoln Memorial, and Korean War Veterens Memorial. Very cool stuff.
Thanks to all who helped make Thanksgiving so nice. (And that includes those of you who commented about or on my last blog entry.)
I see Dr. R on Tuesday for a two month checkup. I don't anticipate any major changes. I'll post something about the visit late Tuesday or some time Wednesday.
Wednesday, November 26, 2008
I thankful for my doctors. I counted the business cards in my wallet: I've seen 11 different doctors in the last year. I'm thankful for all of them. I've been lucky to have excellent medical care, doctors that I like and trust. And that doesn't count the dozens of nurses, medical office workers, physicians assistants, radiological techs and phlebotomists that I've seen. There are darn few that I would say I'll never go to again.
I'm thankful for the researchers doing such great work in figuring out what NHL and cancer are all about, and how to make them go away. I'm thankful for groups like the Leukemia and Lymphoma Society that raise funds to keep them going.
I'm thankful I have such a great job. Not only is it something I enjoy nearly every day, but more importantly, I have something close to lifetime job security, with a great medical insurance plan. I hear stories in the support group about people losing their jobs and their benefits, and I realize how lucky I am that I don't need to worry (too much) about that kind of thing.
I'm thankful for music. I've always loved to listen to it, and now I'm happy to be able to play it myself, which has been a lot of fun. I love to listen to my kids playing. Isabel and I always said we wanted a house filled with music, and when the kids were smaller, we'd play music after dinner every night. Now the kids are doing it for us. It's a nice thing.
I'm thankful for my support group. A lot of what I know about NHL has come from the people in the group. I've stopped doing a lot of research about NHL on my own, because someone in the group beats me to it and posts a link for everyone to read. They've been a wonderful source of information and inspiration for me. I've had a few bad days, and had some of them help pick me up. I've tried to do the same for them, and it's very satisyfing to have them say thank you for a few kind words I've passed along to them.
I'm thankful for readers of the blog that are complete strangers. Every now and then I'll get a comment or an e-mail thanking me for something I wrote, and it's from someone I don't know, usually another lymphoma patient, but not always. Cancer can bring on such a sense of helplessness sometimes. It's not as bad for me most days because I'm still asymptomatic, but the reality of watch and wait is that we know what it is we're waiting for. The blog began as a way to keep family and friends informed, but if you look again at my very first entry, I said maybe there was a chance that someone I didn't know would get something out of reading it. That has happened. Hearing from someone that the blog gas helped has been very empowering at a time when it's easy to feel powerless.
I'm thankful for readers of the blog that I do know -- friends, co-workers, nieces and nephews, cousins, in-laws. I love getting your comments on-line. I never know for sure who's still reading (I should have gone with a WordPress.com blog, which lets you track that sort of thing), so it's a delight to get an on-line comment and know there's still someone out there reading. It's great to get an off-line comment, too, a reference to something I wrote about, maybe from a co-worker passing me in the hall. I'm sure every blogger loves to get comments. For a writing teacher, knowing that readers are out there is even better. I thank you all for your support.
I'm thankful for my parents. They always said I never really gave them much to worry about (at least until they figured out that I was just really good at hiding all the worrisome things from them). Now I've made up for it all, and given them plenty to worry about. I'm so thankful for everything they've done for me, and even more for how strong they've been in the last 10 months or so.
I'm thankful for my brother. Last year, the day after Thanksgiving, he and I spent about 8 hours together, browsing for fishing and boating gear, eating horrible bar food, drinking cheap beer, and playing pool. It was the most time we'd spent together in years, and it was great. Since the diagnosis, we've become even closer. I'm thankful for all of his comments on the blog, even the inappropriate comments, for his phone calls when I go a few too many days between postings, and his e-mails when I seem down. (OK, I'm especially thankful for the inappropriate comments.)
I'm thankful for my kids. They bring me great joy. They drive me nuts sometimes, but that's part of the deal, I know. I love doing special things with each of them -- bike rides and watching sports with Peter, cooking and exploring nature with John, watching Disney movies and dancing with Catherine. They're a blast. I'm proud of how well they've been handling all of this.
And I'm mostly thankful for Isabel. She had no idea what she was getting into when she promised that whole "sickness and health" thing -- no one ever does. She 's been so strong, so positive, so supportive through all of this. I heard someone say once that in a good marriage, you take turns being crazy. We've managed to do that, balancing each other out, being positive when the other is feeling bad, energetic when the other is tired, sane when the other is crazy. It's a great comfort to know when I'm down, she'll be up. Love you.
Happy Thanksgiving, everyone.
Saturday, November 22, 2008
Instead, I'm just going to pass on a link. It's from one of my favorite writers, Bill Simmons, who does a column for ESPN.com called The Sports Guy. Simmons is just about my age, and grew up in Massachusetts (huge Sox, Pats, Celts, and Bruins fan), so a lot of what he writes really hits home for me.
A couple of days ago, he wrote about a treasured memory from the 70's -- a nasty episode of Battle of the Network Stars. Those of you who are of a certain age will remember the show, and maybe even the episode. Click here if you need a reminder of what BotNS was all about. Then take a look at his column -- first watch the clip, and then read his column.
It's great -- politically incorrect commentary, "athletes" puffing on cigarrettes, and an ABC team that features both Lynda Carter and Farrah Fawcett. Holy moly.
More next week, when I feel better.
Wednesday, November 19, 2008
I need to send out a great big Thank You to Kelly and Josh. A few days ago, I got a package from them with a copy of Mr. Rogers' book, You Are Special: Words of Wisdom for All Ages from a Beloved Neighbor. But the best part was, it was autographed to me by Mr. McFeely, the delivery man from Mr. Rogers' Neighborhood, and also included an autographed picture from Mr. McFeely, reproduced here:
I wrote to Kelly to thank her, and to find out how she obtained such treasures. Kelly told me that there was an event at a local museum and Mr. McFeely was there. Since Mr. Rogers had come up on the blog recently, she thought I'd appreciate the gifts. I sure do!
(Kelly and Josh -- I never thanked you on the blog for your first gift, a nice knit hat that includes, shall we say, a message to cancer conveying both my feelings toward cancer and my attitude about it. It's a four letter thing. Can't really put it online. Or wear it anywhere. But thanks again for it.)
I assume everyone remembers Mr. McFeely. Here's a clip to remind you -- Mr. McFeely is trying figure out who in the Neighborhood of Make Believe ordered a bunch of sand. "McFeely" is actually Mr. Rogers real middle name, in case you were wondering where the name came from.
The actor who plays Mr. McFeely is David Newell. He travels the country now, promoting Mr. Rogers' Neighborhood, trying to keep the legacy alive. A documentary of his travels came out this year; it's called Speedy Delivery. It was on PBS earlier this year, and is out on DVD now. You can see the trailer at the film's official website.
The book that Kelly and Josh sent is very nice. It's a series of short quotes from Mr. Rogers on all kinds of subjects. He was a very positive person, but a very realistic one, too. A sample:
"There is no normal life that is free of pain. It's the very wrestling with our problems that can be the impetus for our growth."
Now, a message for my brother:
I appreciate your holding back and not saying anything about Barry Manilow. I tried really hard to find some connection between Mr. Rogers and Barry Manilow for you, but there was virtually nothing. You'd think that the two of them, as songwriters, would be featured somewhere together.
Here's the best I could find: an eBay ad for a People Magazine from 1978. Shaun Cassidy is the cover, but there are separate articles inside on both Mr. Rogers and Barry Manilow. As far as I can tell, that's the closest they ever came to meeting.
(Looks like a fabulous issue. There are also articles on Chuck Mangione, Bob Marley, Dennis Kucinich, Richard Nixon, Dolly Parton, and Madeline Kahn. How's that for a dinner party invitation list?)
Sunday, November 16, 2008
Thursday, November 13, 2008
A guy named Dr. Bill Cham has a new book out called The Eggplant Cancer Cure; his website is EggplantCancerCure.com. According to the web site, "Dr. Cham has found substances which can penetrate and kill skin cancer cells but can’t penetrate normal skin cells, so normal skin cells are untouched and unhurt while the skin cancer cells die!" He claims to have conducted extensive studies on a cream he made (called Curaderm), which contains substances derived from eggplant. The cream is rubbed on skin cancer tumors (including late stage melanoma), and in a period of months, reduces the tumors and cures the cancer. He claims it has cured 70,000 skin cancer patients in Australia, and he's working on a way to make it work on internal tunors as well.
By the way, he isn't an M.D, he has a "Ph.D. in Medicine." And we all know how useful a Ph.D. is....
It all sounds great, but there are some problems. He claims that the cream has been through Stage I, Stage II, stage III, and Stage IV clinical trials, but apparently, there isn't any published record of them. His website lists a bunch of publications supporting Curaderm, but some have titles like The Skin Cancer Cure So Effective, It's Being Kept Secret. There's a nice critique of Cham and Curaderm from a blog called Respectful Insolence, which looks at a lot of cancer cure claims like this.
I'm a little skeptical of any cancer cure that's being kept a secret.There are two important lessons to be drawn from all of this:
1) There are a ton of cancer cure claims online. I know someone who's pushing some kind of juice on me that costs $40 a quart. But there's no real evidence that it actually wortks, apart from some personal testimonials. I can't afford $40 juice, and I can't emotionally afford "cures" that may or may not work. I have no problem with alternative medicine and natural cures, and I avoid drugs of all kinds unless I absolutely need them. An apple a day really does help keep the doctor away. I'm an antioxidant freak. But part of the problem with follicular NHL, in terms of alternative and natural cures, is that it's so slow growing, and it waxes and wanes, that it's nearly impossible to isolate something and say it's the cause of the improvement. Very frustrating. But I still eat a lot of fruit anyway.
2) I really wish eggplant was a cure for cancer. As my brother can attest, our Mom makes the best eggplant parm in the world. It's come up on the blog more than once. In fact, if eggplant provided a topical treatment for skin cancer, my brother and I would rub eggplant parm all over ourselves. And frankly, it wouldn't be the first time someone has done it.
The author of the Respectful Insolence blog does not completely discount the idea that compounds in eggplant can help skin cancers, he just wishes Dr. Cham would submit the treatment to more rigorous testing than Cham has been willing to do. As you know from reading the blog, I'm very willing to be part of a clinical trial. So I hearby volunteer to consume my mother's eggplant parm every chance I get, in the hopes that it can help provide data for researchers working for a cure.
Just doin' my part.
Wednesday, November 12, 2008
To review: "Liquid" cancers like NHL are hard to treat with radiation because the cancer cells don't hold still -- there's nothing to aim the radiation at. The development of Rituxin, an antibody that recognizes B cells (including the cancerous ones) and attaches to them, was a huge advance for lots of reasons (and even more reasons are popping up). Zevalin (and its cousin Bexxar) are basically radioactive Rituxin -- Zevalin attaches itself to the B cells and delivers a dose of radiation to them. It's a pain to administer (you need to assemble a team of nurses, radiologists, and nuclear medicine specialists to do it), but in theory, it's a great therapy, combining a couple of different types of treatment. But studies are trickling in to show that it's meeting that great theoretical promise.
The October issue of the Journal of Clinical Oncology includes an editorial from Oliver W. Press, a researcher from the Fred Hutchinson Cancer Research Center and University of Washington in Seattle. (He's a big name from a big research center).
In a nutshell, Press reviews a couple of recent clinical studies of Zevalin, and while he points out some problems with the ways the studies were conducted, he's very hopeful about the results, and thinks they signal a huge advance in treating indolent lymphomas like Follicular NHL.
As Press points out, Zevalin has been used up top this point as a "down the line" treatment -- when chemo stops working, you turn to RIT. It's been fairly successful when used this way.
However, a major new study looked at Zevalin as a first-line treatment. In other words, the study looked at people who were given Zevalin before they received any chemo or other treatments. The results were impressive: patients given either Zevalin by itself, or Zevalin combined with chemo, showed 90-100% response to the therapy, with up to 90% showing complete response (the lymphoma was wiped out, at least temporarily).
A second study that Press describes looked at using higher-than-normal doses of Zevalin after a shortened course of chemo (three doses instead of the usual six), and also came with encouraging results. The chemo wiped out a lot of the cancer cells, and the Zevalin took care of the rest. Combining the treatments means attacking in different ways, and increasing the chances that you'll hit more of the cancer.
This morning, I read about a third, similar study that looked at a patients with advanced follicular NHL (they were in the "bulky" stage, meaning their nodes were more than 10 centimeters, or about three inches), who were given a shortened course of chemo, followed by Zevalin, then followed by Rituxin. Similarly good results -- nearly 90% of patients were still in remission after two years. The study is ongoing.
It's all very encouraging, not just for the results themselves, but because they should inspire more people to try Zevalin (or Bexxar) and encourage researchers to keep tinkering with dosages, sequences, and follow-ups. I'm convinced RadioImmunoTherapy is going to play a bigger role in treatments soon, and we (the NHL community) are all going to be happy we gave it a chance.
Sunday, November 9, 2008
Peter dressed as a biker. He went to his middle school Halloween dance, and was a finalist for Best Homemade Costume, probably because it's a complete 180 from what his teachers know of him.
Catherine was Hannah Montana, which is no surprise, because the Connecticut governor issued an Executive Order this year that every girl in the state between 5 and 8 had to dress as Hannah Montana. (By the way, Catherine still has superstar amibitions, and still plans to call herself Morgan Oregan when it happens.)
John went as a Jedi Master. The tunic is store-bought, but Isabel made the brown Jedi robe, to John's specifications (that it be easy to throw off, should a light saber battle break out. Which has happened more than once since she finished the robe).
I think Peter is worth looking at one more time.
By the way -- I chaperoned the middle school dance. I went as Joe the Plumber. (Nobody got it, despite the name tage that says "Hello, my name is Joe." "Are you Bob the Builder?" No, I'm not. Go read a newspaper.)
Finally: Strudel dressed for Halloween, too. She was a medieval princess.
I love this picture. She was about as miserable as she looks....
Friday, November 7, 2008
Which isn't to say I'm feeling fatigue (one of those "B symptoms" I'm supposed to watch out for). I'm feeling just fine, physically. I think we're getting to that point in the semester when everyone is just spent. Midterms are over, Thanskgiving break is a few long weeks away, and everyone is just kind of feeling mentally fatigued. Unfortunately, students feeling this way drag teachers down with them.
I have an afternoon full of meetings, including one where the university President and the Finance VP will tell us how bad the school's budget is right now. That will be an uplifter, I'm sure.
The good news is, I'm still the healthiest darn cancer patient around (go for my cholesterol etc. blood test tomorrow morning), I have a job that I like, and I'm not the chair any more, so I'm not the one that has to worry about the budget.
I'll feel beeter next week, I'm sure.
Tuesday, November 4, 2008
First, I thought John McCain's Saturday Night Live/QVC performance was wonderful. He's very good at laughing at himself (and SNL was very good about giving him some good lines). Can't get the link from NBC to work, but check it out yourself (here's the lkink to the main NBC page).
Here's a link that will work. It's called "John McCain gets BarackRoll'd." It's a take on an internet prank called "RickRolling": someone sets up a link that promises something good (like a scandelous photo of a celebrity), but when the link is clicked, you get a video of the song Never Gonna Give You Up" by Rick Astley. (Here's the original.) This prank is itself a take on a similar prank, but the link took you to a photo of a toy duck on wheels (so you'd be "duck rolle'd"). Very clever editing. I like it when people take time to do their satire right.
Most of all, I like seeing Obama dancing. I'd love to find a video of McCain dancing, but they're all fakes. Having both candidates dance would justify one my favorite quotes, from James Brown, my icon and my avatar:
"The one thing that can solve most of our problems is dancing."
Now go vote.
Sunday, November 2, 2008
The race was the Bob Corda Memorial 5K, which is part of Homecoming Weekend at Southern. I've run in it twice before. It's usually a pretty small field of faculty, staff, students, and alumni. This year, with it starting at 8:00am on the morning after Halloween, and with the temperature a chilly 43 degrees at the start, there were almost no students running. But there seemed to be about the same number of "Masters Runners," as we over-40 folks are called.
I know a lot of the people who run in this race, and I use that as inspiration. Last year, I finished just behind a certain faculty member from the Computer Science department, and I really wanted to beat him this year. I started the race kind of easy, and about a mile into it, I found myself next to this guy. I stayed with him for a couple of minutes, and then turned it up just a little bit and pulled ahead of him.
Next on my radar was the race organizer, a staff member who works closely with Student Government. Since students were helping with the race, telling us where to turn on the course, they all cheered for her whenever they saw her. Since I was just behind her for a while, I thought they were cheering for me, until they said her name. But I took that as some inspiration and passed her, too.
At about 2 miles, I was passed by a man about my age. I kept him in my sight, hoping I'd be able to pass him near the end, if I kept something in reserve. Passing him was important -- I wasn't sure if he was in my age group, but I thought he might be, and since I placed 4th last year, I figured if I could pass one person, I'd have a shot at a prize this year. With about a half mile left, slowed down, rubbing his calf. I asked him if he was OK as I passed him. (He said he was fine.)
(A cheap victory, coming in third because of an injury to an opponent? Heck no. The race isn't just about what happens on the course that day. It's about everything you do leading up to that point, too. My superior training and preparation paid off for me. I earned it.)
I finished in 28:38 (about 9:14 per mile), one second slower than the race I ran in Massachusetts in late September. I was hoping for a little faster time, but I'll take it. It earned me third place in the Male 40-49 year old division, and my prize was a $5.00 gift card to Dunkin Donuts. After the race, I used it to buy coffees for Isabel and me, and then I met her at John's soccer game.
(But the DD people let me keep the card. I'm going to frame it.)
The official Homecoming photographer was at the race, so I'll have a link in a few days with a picture or two of me on the Southern website.