Monday, March 31, 2008
On Saturday, Peter played alto sax at the FMI All-State Band concert. This involved over 300 kids from Catholic schools around the state. Four bands played; Peter had auditioned and was placed in Symphonic Band, second highest of the four. He did a great job. It's rare for a fifth grader to make that band, so we're very proud of him.
The kids got their scores from the Connecticut Young Musicians Festival, where they all played piano. All three of them scored a 4 out of 5, so all of us are pleased. Catherine has been playing less than a year, so that score was great. And John and Peter both played some challenging pieces, so their scores were great, too.
Such talented children. I can't even read music, so I can take no credit for all of this.
I listened to a really interesting webcast on follicular NHL yesterday, with a doctor from Rochester, NY who is a specialist in this lymphoma. [I can't get the link to work, so I can't let you listen to it.]
He talks about some of the promising treatments for follicular NHL. Thought I'd share some of what he said:
The standard treatment for a long time was a chemotherapy called CHOP, which stands for four different drugs. In the last 10 years, it has been CHOP-R, which is CHOP plus Rituxin, a monoclonal antibody which works by seeking out a specific protein (CD20) that is present on the B-cells that are affected by certain lymphomas. Rituxin is also used on its own with some effectiveness. One of the great things about Rituxin is that is has almost none of the side effects that chemo has. This drug alone has almost doubled the survival rates for fNHL patients.
Rituxin has been used for about 10 years, and in that time, researchers have built on this technology in other ways. Two other drugs called Bexxar and Zevalin also target CD20 proteins. But the twist is that they have a tiny dose of radiation, so they zap the B-cells when they find them. This is a huge advance. Traditional radiation treatment targets individual tumors. Lymphomas are harder to use radiation on because the "tumors" are cells that travel through the blood -- nearly impossible to pin down. Bexxar and Zevalin allow the radiation to get to where they need to go. The treatmnent takes only a week (versus months for chemo). The downside is that, because it's radioactive, a special team needs to be assembled to administer it. No going to the office and letting an onc nurse do it. So they've been underutilized so far. Yale, however, has offered the treatment in the past.
Another drug being tested now is called Revlimid. It has been approved for use on patients with Multiple Myeloma, another blood cancer, a "first cousin" of follicular NHL. This one works in a different way than the monoclonal antibodies. There is some research that suggsts that certain abnormalities of the blood vessels may support cancer, a possible reason Multiple Myeloma (and perhaps indolent lymphomas like follicular) are so hard to wipe out. Revlimid targets the blood vessels, creating changes in them that may wipe out whatever property is getting in the way of killing off cancers.
Another Myeloma drug being tested on fNHL patients is Velcade. This takes yet another approach to the disease. It is a Proteozome inhibitor. As the webcast describes it, every cell has a "wastebasket" that collects waste products that occur when a cell takes in nourishment; the wastebasket is then emptied into the blood, where it gets expelled. Velcade shuts off the "emptying" feature of the wastebasket. All of the waste builds up in the cancer cell, and it eventually kills itself. It's kind of a poison that is already present in the cell.
Yet another group of drugs in development is called BCL2 inhibitors. BCL2 is a protein that keeps a cell from dying. When the cell runs out of the protein, it dies -- this is a normal thing. All cells die. In lymphoma cells, particularly in indolent lymphomas like follicular, there's too much BCL2, so the cell takes a long, long time to die (and it's really hard to kill off). The BCL2 inhibitor would tell the lymphoma cells to stop producing so much of the stuff, so they would either die a "normal" death, or be easier to kill off with Rituxin or some other agent. These drugs are in early trials, so probably 4 or 5 years away from approval. But this is most promising, if it all holds up as well as it has so far in early tests. The really cool part of this? It's a daily pill -- no chemo, no injections.
That's kind of the theme in lots of these potential treatments: unlike chemo and radiation, there are fewer, less harsh side effects. And more importantly, more options. Follicular NHL, as I've written once before, is the "Tarzan" cancer -- there are always more vines to grab on to, more treatments to try. Some treatments work for some people; other people won't stay in remission and need to try something else. But it usually grows so slowly, there's time to try other things.
The researcher being interviewed was very excited about it all, and I'm excited about it all, too. It's bringing out that inner scientist in me. Makes me wish I stayed pre-med for more than one semster....
Saturday, March 29, 2008
If you can't read the caption, it says, "Brothers: Because neither of us wants to be the only one drinking on a holiday."
Then again, he's the one who came up with the caption, "Wiffleball: When you stink so bad that you can't even find an adult softball league that will let you play." So maybe she doesn't have to say anything....
Thursday, March 27, 2008
Tuesday, March 25, 2008
I had my monthly follow-up with Dr. R this afternoon. Nothing's really changed. These monthly visits consist of blood work, a physical exam, and my self-reporting of symptoms. Everything looks great.
My blood work is "perfect" and "rock solid" -- no changes from last month. No anemia, no high or low white cell counts. Some other tests that look at liver output will come back in a couple of days, but given the good blood counts, it's unlikely that I'll have any problems there.
No nodes are swollen (except the one near my hip bone that first "presented"), and no organs appear swollen (like the spleen, which can often be felt externally).
I'm not feeling any B symptoms (weight loss [I've actually gained a couple of pounds, thanks to those Dove Dark Chocolate Easter Eggs], chills, night sweats, etc.). My various aches and pains probably aren't related to the NHL, given where they are located.
He was pleased. I didn't really have any questions for him. "Yeah," he said, "it gets kind of boring aftera while." So I guess that means my slow-growing, low-grade lymphoma is doing what it's supposed to do, which is grow very slowly.
We scheduled another CT and PET scan for April 16, which would make it about 3 months from the last one. That's a little on the quick side, but he'd like to get a sense of how quickly things are progressing, if at all. He asked the radiologist to compare the scan with the January one, so we can see if anything has grown or shrunk. We'll aslo re-stage, if necessary. Then I'll see him again about a week later to discuss the results. He doesn't expect anything to have changed drastically since January. If things look good on the scans, we can make the now-monthly appointments every two months, or even three months, until something changes.
So overall, no news is good news. As much as it sucks to be in limbo this way, I'd rather wait around for a long time than be really sick.
Thanks for all your positive thoughts and prayers.
Monday, March 24, 2008
Mom and dad came down Saturday, and my brother and his wife and two daughters came down Sunday, and we all spent Easter together. It was really great to have everyone there, especially since I hadn't seen my sister-in-law Karen and my nieces Nicole and Emily since the diagnosis. Family is good.
This came on the heels of my mother-in-law visiting from Wednesday to Saturday. The kids won't know what to do with themselves without all that grandparenty love so close.
Plus, Strudel misses all of you.
So thanks for all the visits. Come back any time.
More tomorrow, after I see Dr. R.
Saturday, March 22, 2008
I have an appointment on Tuesday with Dr. R, the oncologist. I'll try to give an update Tuesday afternoon or evening. I think it will be fine, but who knows. I'll tell him about my little aches and pains and see where it goes.
I may post Monday, but I'm expecting a busy day at work -- first day back from spring break, and the last day to withdraw from classes. So I make no promises.
Have a good weekend.
Wednesday, March 19, 2008
The original is running down in the lower left corner, but if you want to see the full version, all on its own, click here. It brings back so many memories, so many questions. In the group shot, why does Lionel Richie hold his headphones against his ear and not put them on his head? Did he think it would mess up his hair? Who thought it was a good idea to give Willie Nelson, of all people, the part that required turning the page? And did Dionne Warwick resent being the one who had to do it? Did she do something to make Quincy Jones angry? Hall earned his line on his own -- but did he agree to sing only if Oates got to sing, too? Why was Dan Akroyd asked? Did you even remember that half of those people were involved?
I remember being on bus soon after it came out (March 1985), and overhearing two kids talking about how great the song and video were. "But did you hear that new guy, Bob Dylan?" said one. "Yeah," said his buddy, "His voice sucks."
My friend Nicole (known to you all as Cocovertigogo) sent me an e-mail yesterday with her thoughts on complacency, being in a kind of in-between place, and her own experiences with the feeling. It was a private e-mail, not a public comment, so I won't get into the details, but she did say that she thought kids (and my kids, whom she knows, in particular) probably have a better sense of that essential balance than we think they do.
Last night at dinner, John was panicked about one of his fish, a female sword tale. It's been acting a little strange lately -- hiding in the plants, not moving much -- usually not a good sign. But I've noticed she gets active once it's feeding time, so I haven't been too worried. Just likes to hide in the plants, I guess.
But John was very worried about it all. He thought she had some white scales near her eyes that he hadn't seen before. He noticed a red barb chasing her some, and worried about the stress that might cause. I offered a reasonable explanation for each of his concerns, and we decided that, rather than take her to the vet (!), we'd add a tablet that would clean the water and help improve her protective stress coat. "OK," John agreed. "I guess we'll just watch and wait."
I stand corrected. He is paying attention.
My mother-in-law is arriving this afternoon for a visit for the next few days. The kids are really looking forward to seeing her. Then mom and dad come Saturday, and my brother and his family on Sunday. I'll try to sneak in one more blog entry before Sunday.
Strudel and I continue to negotiate the topic of her next blog entry. American Idol? Her Final Four Picks? Some weird diatribe on the superiority of certain European breeds and their contributions to art and culture? I don't know if this is a good idea....
Monday, March 17, 2008
Here's a St. Patrick's video for you. Hope you enjoy.
And a bit of St. Patrick's day trivia for you: St. Patrick wasn't Irish. He was born in Scotland, and his mother was from a well-known Roman family. So his father was Scottish and his mother was Italian. Sound familiar? (It's true. I looked it up in the Catholic Encyclopedia.)
The leprechauns visited our house this morning, as they usually do on March 17, playing their usual tricks -- the toilet water had turned green, and the kids' breakfast juice and milk had turned green, too. And once again, I couldn't catch the leprechauns in the act. (We had a little scare when we heard Strudel crunching on something during breakfast. Thank goodness it was only one of her nyla-bones. We were afraid she's caught a leprechaun.) Corned beef and cabbage tonight.
I'm hoping for a little luck of the Irish soon. I think Lady Luck owes me, especially after the Foxwoods Casino losses a couple of weeks ago.
Plus, you know, that whole cancer thing.
I have a doctor's appointment next week, so I'll give you a physical update then. But I thought I'd give you a mental update now.
Watching and waiting continues to be a strange experience. I have my monthly follow up with the oncologist next Tuesday. I don't expect him to tell me there's any big change. I don't really feel any changes. No "B" symptoms. I have occasional discomfort in my chest and sides. Not pain, by any means. Aches, maybe? I'm trying to lift weights once a week, and it feels like the kind of "day-after" aches that I usually feel, but they last for more than a day. Is it lymph nodes swelling? Who knows. If it is, and the doctor feels them, does that matter? Is it enough for say, "We need to start treatment?" Again, I don't know. It sure doesn't feel like I need to.
News about my condition is still spreading, slowly. I brought Catherine to a birthday party on Saturday, and one of the moms (who also has a son in Peter's class) told me she had heard from her older son, and asked how I was doing. Most people don't say anything about it to me, which is fine. I don't expect people to know what to say, so silence is probably better. For those that do say something, their reactions are very mixed. Some seem devastated (which seems to go away when they see that I'm doing OK). Some have the opposite reaction. One of the moms at school told Isabel that she'd heard a rumor about me, and Isabel explained what was going on -- indolent, slow-growing lymphoma, no treatment yet, etc. The mom was relieved. "Oh -- so he's fine." Well, no, not exactly "fine." I've got cancer.
That's my biggest fear, especially with the kids. I don't want them to become complacent, and think everything is fine. They have no reason to think otherwise, given that we've had to make so very few changes to our lives and to our daily routine. What happens when the inevitable progression comes? Will it be more of a shock to them then, seem more sudden to them, throw them off all over again? Of course, progression of the disease isn't completely inevitable. Some people with follicular NHL never need treatment. Some experience autoremission, where their body somehow figures out how to fight off the cancer on its own. But they're a very small percentage.
I try not to get complacent myself. There are days when I need to remind myself to forget that I have cancer, and move on with what I want to do. Then, on some days, when I'm busy and distracted and I get ahead of myself, I need to remind myself that I have cancer. It's a very strange state of mind to be in. I make long term plans, but I don't let myself get too detailed about them just yet.
The good news is, I've gotten good at being in that strange place. I have bad moments, but not bad days or weeks. I see the watching and waiting period as a time to kind of build up strength and gear up for what will come. I'm not in a stare-down with the cancer; it's more like we're at opposite sides of a crowded room, aware of each other, but agreeing to leave well enough alone. For now. But I know he'll block the door if I try to leave, so we'll need to have a little chat at some point, whether I like it or not.
But mostly, I'm living life as I have been up to this point, but with a couple of exceptions. First, I have fewer doctors appointments now than I've had over the last six months, since I know what's going on. And second, I'm eating more blueberries, since they're really high in antioxidents.
Other than that, it's pretty much the same.
Friday, March 14, 2008
My brother-in-law Joe mentioned in the comments to my last post that National Public Radio's "Fresh Air" ran an interview with the comedian Robert Schimmel, an NHL survivor who wrote a book recently called Cancer on $5 a Day: How Humor Got Me Through the Toughest Journey of My Life. The interview is about 40 minutes long. Interesting stuff -- funny at times, very sad at times. Make sure you're in a happy place when you listen. He talks, for example, about the pain of chemo being so bad that he contemplated suicide. So, it's not all laughs. He's had a pretty painful life in many ways: his parents were both Holocaust survivors; he lost a son to leukemia; he married and divorced the same woman three times....Jeez, I hope the book's funnier than the interview.
If you want funny, you can look at some of his material on YouTube. He's R-rated at best (maybe even X-rated), so be warned. Apparently, he had a pilot for a sitcom ready to go when he was diagnosed with NHL, so it never happened. The opening scene of the pilot, even before the opening credits roll, is a graphic depiction of him getting a colonoscopy. But in a sit-com kind of way. So here it is, if you dare. Don't watch it at work, or if your kids are around.
Something else for you, also slightly depressing, but with a great ending: an essay called "My Year Running Through Cancer" by Jennifer Goellnitz. She writes about being diagnosed with Hodgkins Disease when she was in her 20's. She's a runner, and the essay focuses on her attempts to run even as she was going through some nasty chemo. She's in remission now.
She gives her e-mail address at the end of the essay, so I e-mailed her a couple of weeks ago to tell her how much I liked the essay, and we've been e-mailing back and forth a little. Her dad is an NHL survivor, 2.5 years in remission, and she writes a column for Running Times online. She's very nice, very encouraging. The NHL support group messge board recently had a posting about her -- to raise money for the Leukemia and Lymphoma Society, she recently ran 214 miles in a week -- more than a marathon a day. You go, girl.
And remember, with both Schimmel and Jenny, their chemo is different from what mine will be/would be, so don't panic about what you read.
One last link: A funny video called The 10 Funniest Treadmill Falls Ever. I like to think of it as a compilation of some of the themes of the blog so far: treadmills and running (no dogs involved, thank goodness), and a few people who are obviously smoking pot. If you don't like America's Funniest Home Videos, you won't like this.
Nicole M, pay careful attention to #4: DO NOT GET ON A TREADMILL IN UGGS.
I've heard I have some fairly new readers who aren't familiar with the "blogosphere," as the kids say. (Or Larry King says -- I forget which.)
Blogs aren't just online diaries; they're interactive web experiences. If you newbies keep reading about "comments" and don't know how to access them, it's very easy: right below the end of the post, on the right, it will say "0 comments," or "2 comments" or whatever, in small print. Click on that and read what others have to say. Add your own by typing in the box to the right of the comments. Don't forget to sign your name.
Thanks for reading. Next week: Strudel is begging me for another chance at blogging.
Have a good weekend.
Tuesday, March 11, 2008
Survival rates for NHL patients have increased fairly dramatically over the last ten years, with 5- and 10-year survival rates on the rise. The numbers are especially good for patients under 45 years old.
The rise is being credited mainly to a drug called Rituxin, which was the first one developed that uses antibodies to attack tumors directly. It is sometimes used by itself as an early treatment, though most often used with chemotherapy (for fNHL, the standard chemo mix is called CHOP-R, each letter representing a different chemo drug; the "R" is "Rituxin), often with "R-Main," Rituxin Maintenance -- infusions every four to six months after chemo is finished.
Rituxin works because it finds and attaches itself to specfic "markers" on the surface of cells. The marker os called CD20. Rituxin knows to target only "B cells," the types that gets infected in certain NHLs, including mine. It won't attack plasma cells or stem cells. Once it attaches, it triggers mechanisms that target this same B cell in other places.
Rituxin hasn't been around long enough to say it's the absolute cure for fNHL, but it's showing some great results. The news story has an image of Rituxin attacking a B cell:
Beautiful, isn't it?
Of course, I have to give the usual "Don't get too excited" warnings: first, the study looks at all NHLs, not just Follicular; and second, if it was an absolute miracle cure, we'd all have been given it by now.
Still, to end on a happy note: Follicular survival numbers are even better than the averages numbers presented in the article, which include more aggressive NHLs, in part due to its receptivity to Rituxin.
Rituxin is likely to be a part of my future.
Sunday, March 9, 2008
First of all, I can't believe none of you know Mr. T's real name. Where were you all for the 80's? Engaging in behaviors that Mr. T would disapprove of, no doubt. I pity the fool who wastes his time breakdancing and experimenting with mind altering substances!
Peter, John, and Catherine got a very special letter on Saturday. It came from Terry Francona, the manager of the Red Sox. It's not a form letter, that's for sure (unless the Sox now have some kind of weird "sorry your dad has cancer" form letter that they use a lot), and the signature is real.
Here's the letter:
Sorry for the small print; this was the best I could do with the scanner.
We don't know who contacted the Sox, but we're pretty sure it was Ken Casey from Dropkick Murphys, since they're the "house band" of the Red Sox. I asked cousin Christine if she could confirm that, and thank Ken for us, but they're on tour right now, so she can't get in touch with him.
Everyone out there has been incredibly generous. We appreciate your time, your good wishes, and the gifts -- small and very large -- that you've given us. They mean a lot, and I've been trying to thank everyone privately and publicly (on the blog), so if I've missed a thank you, I'm sorry. But know that we're aware of how blessed we are to have such great support. It makes us feel good knowing that you've been there for us when things haven't really been too rough yet. We know you'll be there when things do get difficult, when the Lymphoma progresses and the treatment starts up (whenever that will be).
Thanks again to everyone.
Saturday, March 8, 2008
Also, he's good to his Mom, and thinks you should be good to yours, too.
Wednesday, March 5, 2008
Visiting a Lymphoma site, I came across a link for cancer humor, and that led me to a bunch of other sites, so I thought I'd share. I know cancer humor isn't everyone's cup of tea (or everyone's bag of chemo treatment), so I'm only posting the less-offensive stuff; you can click on the links and dig around a little to see the other stuff. (Hint: it's the kind of stuff that, say, 12-year old boys would find funny if they found colorectal cancer to be funny.)
Here is a Washington Post article from 2006, "Humor, Rhymes with Tumor". It focuses primarily on one cartoonist (see below), but it does talk about cancer and humor in general.
That cartoonist is Miriam Engleburg, whose comic strips are called Cancer Made Me a Shallower Person. Here's a sample. She has a bunch of non-cancer-related strips, too, mostly dealing with parenthood. One is about marijuana, which you all seem to enjoy talking about, so here's the link to a sample called Toddler or Stoner?.
Another nice site is GotCancer.org (the name plays on the whole "Got Milk?" thing). Their motto is "Your online source for unique cancer shirts, hats and more!"
This is where you'll find a great selection of colorectal and testicular cancer t-shirts with amusing puns. Of the non-rude shirts (click the link to see the rude ones for yourself), I like:
"Think Positive, Be Negative (It's a Cancer Thing)" and
"My Oncologist is Better than Your Oncologist."
But this one is my favorite. What NHL guy could think otherwise?
A quick, clean joke:
Q. How many cancer patients does it take to screw in a light bulb?
A. Just one, but it takes a support group to cheer him on.
Finally, you might enjoy Buck Cash's Cancer Island. Among other things, he has a series of cancer-related comics called "Toomers" (click on the "toons" link). Some are fairly intense chemo-related topics. Here are two that are OK to post -- only mildly offensive, especially compared to the Irish Cancer joke:
(Kind of self-explanatory.)
Tuesday, March 4, 2008
Video soon, I promise.
I'm wearing my red "Relentless" shirt. Told you I looked darn good, didn't I?
Sunday, March 2, 2008
After I talked to Mom, I told Peter that I knew Ken Casey, and he about fainted. (He gets a little star-struck at times.) In the meantime, Mom told me that she had contacted Christine and hold Christione that Peter was such a big fan, so Christine called Ken Casey. Apparently, they knew each other well as teenagers, and have kept in touch. (Still not sure about the details of their relationship. Christine -- could you explain?)
Ken sent a package to out to us immediately: an autographed picture, two shirts, and a bunch of stickers. Here are Peter and John wearing the shirts at the St. Patrick's party Saturday:
Yesterday, we wrote to Christine to thank her, and asked if it would be OK to e-mail Ken Casey directly to thank him. She asked Ken if it was OK, and he agreed ("Anything for you," is what I think Christine said that Ken told her. Seriously, Christine, can you explain this relationship?). So Peter e-mailed him last night to say thanks. He wrote about two sentences, and I asked if that was all he wanted to say. "I don't know what else to say!" Peter told me, all nervous. "I've never written to someone who's world-famous before!" (Peter knows Dropkick is off to tour Europe in a few weeks -- thus, "world famous.")
So, thank you my dear cousin. You made Peter's week -- maybe his month. He'll be bragging about this at school for the rest of the year.
We had a good time at the St. Patrick's Day party (two weeks early, but that's what you need to do if you want to book an Irish DJ, apparently). Catherine especially enjoyed herself. She didn't stop moving the whole night. When slow songs came on, she danced ballet. When fast songs came on, she dragged someone out to the dance floor (usually me) or just ran around in circles. Here are some pictures:
John getting down, doing the Macarena:
Catherine dancing with some friends:
Peter doing the Chicken Dance. Instead of the clapping part, he makes armpit noises:
And yes, he really did write a piece called "Concerto for Saxophone and Armpit." But every time he tried to play what he'd composed so far (with himself on sax and his brother on armpit), John would laugh too hard to make it work, so he abandoned the project.
Discussing music makes as good a transition as any. Next entry: the kids perform at the Connectocut Young Musicians Festival, and Dad runs a 5k.
Saturday afternoon, all three kids performed in the Connecticut Young Musicians Festival.
Saturday night, we all went to a St. Patrick's Day party at St. Rita's. Peter and John wore their new Dropkick Murphy's shirts, sent to them by band's the lead singer, Ken Casey, at the request of Cousin Christine, an old friend of Ken's.
This morning, I ran another race, the WPLR ShamRock and Roll 5k.
Peter's going to be on the computer all afternoon finishing a school project, so I'll post pictures and details of all of the events later today, or tomorrow sometime.
I'm still relentless, and I still look darn good in running clothes.