Living with It

The Huffington Post featured a column last week by a man named Paul Stoller, an anthropology professor and Follicular NHL survivor, called "Living with Cancer."  Stoller was diagnosed with fNHL 10 years ago and went through chemo, and has been in remission since then.

He writes about how he feels when people say he "beat it."  I don't think any cancer patient ever feels like it's been totally beaten -- there's always that danger that it will come back. For someone like Stoller (and like me), it's even harder to say that, given the nature of Follicular NHL -- it keeps coming back. Stoller wrote a book about his experience, relating it to his anthropological research in Africa, where he worked with a traditional healer. The experience taught him how to live with his cancer. I'd never heard of the book before, but it sounds fascinating. (See his column for a link to the book on Amazon.)

In the Huffington article, Stoller says that being in remission is like being "a defendant in court, waiting for what seems like a life or death verdict -- not an easy place to be." Interesting metaphor. I've felt at times like someone in a bar, having a good time, but noticing someone in the corner who has had a few too many and is looking for a fight. In most bars, you can just get up and leave, but in this bar, you're stuck -- you can't leave. You know the fight is coming, and you know your friends aren't far away if you need them to come and help, but you're not sure they'll get there in time. If you've ever been in that situation in a bar (and I'll bet lots of people have, or something like it), you know how uncomfortable it feels.

Stoller says he was asked once if he thought often about having cancer, and he said "Every day." I'm with him there. Like Stoller, I don't dwell on it every day, but I do think about it -- planning or researching or writing a bog entry, checking in with the support group -- it's hard not to think about it every day. I don't know if that's a Follicular thing, or a cancer thing, but I don't think it's a bad thing (something else I share with Stoller). Why not? Read what Stoller has to say and you'll find out.

Globetrotters

The kids were on vacation this week, and Isabel and I had to work, so we couldn't do too much that was really fun or interesting with them. But on Thursday, Peter saw a commercial for the Harlem Globetrotters game/performance nearby this weekend, so we bought tickets for Saturday afternoon. (Plus, since Peter got his braces off Thursday, it seemed like an extra-good reason to do something to celebrate.)

The kids had seen the Globetrotters on TV, and thought they were hilarious. Of course, Isabel and I have fond memories of  Curley Neal, Geese Ausbie, and (my favorite) Meadowlark Lemon, from when we were kids, catching the Globetrotters on Wide World of Sports on a Saturday afternoon once or twice a year when they were on. It's all goofy, innocent humor.

Things have changed a little bit, but some of their classic routines are still there, like throwing water on the ref and then pretending to throw more on fans, but throwing confetti instead. And pulling down opponents' pants, revealing funny underwear. And of course warming up to "Sweet Georgia Brown."
One of their newer routines involves setting up like they are going to run a football play, but taking about 10 minutes to do it because each one of them has to do something goofy, then going through the whole thing backwards, on "rewind" (which was really impressive). They must practice this stuff for hours.

They also had their old mascot, Globie, plus his "big brother," known as "Big G." This was without a doubt my wife's favorite part of the day. Check out this video of Big G. It's a couple of years old, and Big G's routine was a little bit different today, but the falling down that he does at about 1:20 of this video was still in there today, and when he did it, I heard Isabel laughing harder than I'd heard in a long time. (Because of a man in an inflatable suit falling down. And yet, she won't even crack a smile at Moe slapping Shemp. Go figure.)

And they also played basketball. Really, really well. Again -- they must practice for hours.

Of course, it's a lot easier to take the shots they take, and dunk the way they dunk, when their opponents don't really try to defend them. Those poor Washinton Generals -- they haven't beaten the Globetrotters since 1971. Peter felt bad for them and started cheering for them toward the end of the game.

It was a good time.

Cancer Blogs

The health blog called "A Hearty Blog" published a list of inspirational cancer blogs a couple of weeks ago. The blogs are grouped by cancer type.

And yes, Lympho Bob is not included. It's a sham. As Fielding Mellish says in Bananas, "It's a travesty of a mockery of a sham of a mockery of a travesty of two mockeries of a sham."

Worse, there are no Follicular NHL blogs in the "Leukemia and Lymphoma" section. It's all Hodgkin's and Leukemia. Anti B-cell bias, is what it is.

But seriously, it's actually a very nice list of survivor blogs, and as they say in the post title, they really are inspiring. I'll admit I don't read any of them regularly, but I have read posts from a few of them. I recommend Cancer Does Suck But it is a Little Bit Funny, My Blood Hates Me, and I'm Too Young for This! I've seen posts from all of these, and a few others, and they do a very good job of explaining and inspiring.

Blogging is important. I think it does a lot for the patient who is blogging -- it allows us to get some things out. And it's certainly good for other patients, too, since we can connect our own experiences to others', and know that we're not so alone.

So I don't need to be on a list. If you're reading this, you've found me, and that's what matters.

Hope it helps.

Back Home

I was away for the weekend, presenting at a conference in DC. It went well, but it's good to be back home.

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I like conferences that are reasonably close to home, so I can take the train. I don't mind being on a plane, but it's all that waiting around and security and driving to and from the airport that I hate. Plus, on the train, I can walk around if I want to. Which is what I told my first seatmate, Cynthia.

Cynthia wasn't in her seat when I got on the train, but her stuff was piled there, and her cell phone was plugged into the outlet next to my window seat, so the chord was running over my legs for a half hour before she finally got to her seat. She talked for the first 10 minutes, though I wasn't sure who she was talking to -- me, or herself. Eventually, I figured out she was talking to me, when she asked if I took the train often. It was about then that I noticed the patch on her arm, just above her forearm tattoo, where she had clearly had a recent IV. (I know what IV line patch-ups look like.) Here's what I learned about Cynthia over three hours:

• She's 55 years old.
• She'd recently been in the hospital with a neck injury.
• She had been visiting her brother, who is an alcoholic, and whose girlfriend is a drug addict, and who had attempted to steal her ATM card.
• Her brother owns a Jack Russell Terrier. He's a nice enough dog, but he has psychological problems. He tries to catch his own tail and gets really angry when he can't.
• The dog is on valium. Her brother occasionally takes some of it.
• Cynthia wished she had some valium at that moment. (I was asked to not take that personally.)
• She couldn't wait for us to get to New York City, where the train took a 10 minute stop to change crews, so she could have a cigarette.
• She was a nurse at one time. Not sure why she stopped being a nurse.
• The worst part about being a nurse was putting in catheters.........I'm not going to talk about that part of our conversation anymore.
• Or think about it.

I got all of this from her in 5 or 10 minute spurts. She got up a lot to walk around -- one of the benefits of being on a train, we both agreed -- because the neck injury made it hard to get comfortable sitting down.

Cynthia was getting off at the Newark Airport stop, though she wasn't sure if there was such a stop. I looked it up in the Amtrak magazine and saw that there was such a stop. Another man also assured her that Amtrak had a stop there. Her brother (not the alcoholic one -- her other brother, Fast Eddie) was going to pick her up there. (I swear she said his name was "Fast Eddie.") But after we pulled out of the Newark Penn Station station and she didn't get off, the conductor told her she had missed her stop.

She immediately got on the phone with Fast Eddie, who agreed to pick her up at the next stop. Which was good, because I was pretty sure she was going to blame me for there not being a Newark Airport stop, and stab me with a plastic knife from the cafe car.

But no -- she gave a civilized good bye, and wished me luck.

On top of all that, I'm pretty sure I that when Cynthia got off, that girl from New Jersey (who was on American Idol and couldn't get anyone to sing with her on Group Night in Hollywood) got on. But she didn't sit with me. My second seatmate never said a word.

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The conference itself was fine. It had been about 5 years since I presented at a national conference (being department chair messed me up that way), and much has changed -- using PowerPoint is now a requirement, and no one wears a jacket and tie (either one or the other is acceptable, but more acceptable is something like a gray v-neck sweater and black pants). My presentation went well, and was well-attended, even though I started at 5:30 on Saturday afternoon, just as the cash bar was opening at the reception downstairs. Which meant I had all the sober, serious people, and none of them laughed at my jokes.

But the best part of it all was being able to stay with my in-laws. I thank them again for their hospitality.

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The train ride home wasn't all that memorable. I did some grading, tried to ignore the guy directly behind me who cleared his throat musically every three minutes ("ah-heh-HMMMMMMMM"), land aughed at the very attractive woman whose shoulder bag hit everyone in the head as she walked down the aisle (on purpose, I think -- she looked like the kind of person who would hit people in the head with her shoulder bag just to make sure they look up from their laptops and copies of The Girl Who Kicked the Hornet's Nest and notice her walking by).

My seatmate for this leg of the trip also said nothing the whole time. Just wrote intensely on a laptop and occasionally picked from a bag of almonds. I thought the very smelly Italian sub I had grabbed in Union Station before I left might offend her, so I held off a while before I ate it. But then I said, Screw it. I have cancer. I'm eating some mortadell' and gabbagoll.

Anyway, like I said, it's good to be back home.

Surviving

Here's a link to a really thoughtful piece from Betsy de Parry, whom I have written about and linked to several times before. It's from her column "Candid Cancer," which she writes for Ann Arbor.com, and it's called "Why the Label of 'Survivor' Rubs Me the Wrong Way." I'm not going to summarize it, because I think it's worth reading on your own.

I will say, though, that I am of two minds about the label "Survivor." On the one hand, I think it's probably very comforting to a lot of people who have been through hell and made it out alive -- in an "I Will Survive" kind of way. In fact, when Betsy posted the column to her Facebook page, someone commented that she also didn't like the term because it sounded too much like someone who has survived a war. But that's why I think it's so important for some people. I've seen the stuff that people have gone through, emotionally  and physically, and they've earned a label that says they did it and survived it.

On the other hand, the one time someone called me a survivor, it just didn't seem right. It happend last summer, during a class I was teaching. I had made enough references to cancer during a  discussion that the class was having about the way people present themselves online that one student, as class was ending, said, "Can I ask you a personal question?" I said "Sure." She said, "Are you a cancer survivor?" I hesitated for a second or two, and then said, "Yes I am."

"That's a big deal," she said. "Yes it is," I replied.

It's one of the few times I've acknowledged my cancer diagnosis to a class. And it felt weird -- not because I think I should hide it (if anything, it should be a non-issue with my students), but more because the term "survivor" kind of implies that the battle is over. I didn't want to get into detail with her about where I was in terms of survival and remission and watching and waiting, but all of that was what went through my mind in those couple of seconds. And if you've been reading for any length of time, you know this battle will not be over for me any time soon. I think that's also part of what bothers Betsy.

And really, from what I know of other cancer survivors (or "graduates," to use one of Betsy's suggestions), you never feel like you're completely out of the woods -- there's always that chance that it will come back, and it's always in the back of your mind. "Survivor" seems too cocky, almost.

That said, I still celebrate National Cancer Survivors Day, and I think everyone who had been diagnosed and is still alive, even if they're in the middle of treatment, is a survivor.

Read Betsy's column. Lots of food for thought.

Not So Fast!

Many lymphoma-focused outlets (including this one) described a presentation at the December ASH conference as "possibly the end of watch-and-wait." The ASH presentation gave data from a study that divided 462 follicular lymphoma patients into groups that watched-and-waited and that received Rituxan right away, and then every two months for two years. The study showed that progression-free survival was better for the Rituxan group -- it took longer for them to need chemotherapy or other treatment than it did for the watch-and-waiters.

But this month's issue of Clinical Oncology News (which is aimed at oncologists who treat patients, rather than at, say, researchers) has an article by Jennifer R. Brown, MD, PhD (wow) called "Hyped Follicular Lymphoma Rx Not Ready for Practice." Dr. Brown points out some potential problems with following this protocol. For example, more Rituxan early on could result in Rituxan-resistance later on, when it might be used more effectively when combined with chemo. She also briefly mentions other issues that need more time to be fully explored: the effects of Rituxan on transformation; effects on quality of life; even problems with cost and convenience of such frequent treatment. Dr. Brown suggests that the Rituxan study is an important first step, but only a first step.


Very interesting perspective. Part of me is happy to see that there needs to be more done before we can be sure that watching-and-waiting is no longer necessary, if only because it makes me feel a little better about having made that choice myself. But I also want to make sure that whatever we decide will become the "Gold Standard for First Line Care" will be something effective for everyone who faces that decision.
 
Brown's critique also makes me want to high five Dr. R, who advised against Rituxan maintenance after my initial rounds of treatment. I wanted to get a little help at keeping things at bay by doing another few rounds of Rituxan, six months after I was done; he thought it would be better to hold off on any treatment until absolutely necessary. So Dr. R gets the point for that one, given what Dr. Brown says about getting too much too soon.
 
It would be wonderful if we had some easy answers. But as susual, it's important to stay patient and remember that we have plenty of other treatment options to choose from right now. Other, better options will come with time. Maybe not all that much time...

Happy Valentine's Day

In honor of this day of love, I had hoped to put up a video of people in movies saying "Yes!" to counter-balance Friday's "No" video. Alas, I can't find one.

So instead, here's a video of someone's favorite kissing scenes from  movies. It's a decent list, though whoever put it together seems to have a thing for Wynonna Rider. But that's fine. I was too lazy to make either a "Yes" video or a kissing video (Bogie would have been in there, somewhere, in my video), so I really can't complain.

So Happy Valentine's Day, all of you. Go kiss your honey. I plan to.

Noooo!

I spent a really long time writing a blog post last night and it wasn't up on the blog when I checked this morning like it was supposed to be. And it wasn't saved anywhere, either. So I clearly either (1) messed something up really bad when I wrote, saved, and posted it, or (2) imagined the whole thing and am losing my mind.

Either one is possible.

I'm frankly too busy to re-write it, and I have the horrible feeling that it probably wasn't all that good to begin with.

But what got me most was that feeling you get when you realized you spent a lot of time on something and then it all disappeared. You, know -- in the movies, there would be an overhead shot, slowly pulling away, as you say "Nooooooooo!"

So in celebration of that feeling, look at this story from this week's Slate, which includes a link to a video featuring just under 12 minutes of people in TV shows and movies saying "Nooooooo!"

It is far more compelling than you would think.

Thar's Gold in Them Thar Tumors!

OK, I'm mostly interested in this story because it made me think of the title for this post and I kind of cracked myself up with it, but part of me also thinks it's really cool research.

Some smart folks at Case Western Reserve have found that attaching a chemo drug to gold nanoparticles (really, really small particles) causes the drug to go deep into the tumor, rather than just attaching to its surface. The treatment is much more effective this way, when it's deep inside.

The key, apparently, is in attaching it loosely to the gold -- using a chemical bond that is more like a shoestring than a big rope, as they put it.

This type of approach to treatment -- attaching the drug to something else that is attracted to the tumor cells -- seems like it's becoming a more popular approach. It's the idea behind RIT (RadioImmunoTherapy), and some other treatments in trials. The great advantage is that you need a lot less of the drug, since it's being channeled straight to the tumor, and so there are fewer side effects.

You can read the link for all the details, but the article makes very clear that the gold does not build up in the body, and is in fact filtered out of the body by the kidneys in a week or so.

I'm not sure what would be more exciting about a treatment like this: the fact that, for a week, it would give me actual nodes of gold, or that after a week, I'd be peeing a precious metal. Either way, I'd feel awfully special.

Cancer Perceptions

From the good folks at LIVESTRONG, a sort of sad video called "Stigma and Silence."

The video features cancer patients and doctors from around the world who talk about the way their cancer is perceived by others. Unfortunately, for too many, it means being isolated, as people don't know how to deal with it, or even think that it might be contagious. And for some, the isolation extends to their families, as the stigma of having cancer almost brings on some kind of shame.

That's just so sad.

And it's why I don't hide that I have cancer. I don't want things to be the way they were 100 years ago -- even 50 years ago -- when "Cancer" was a word that wasn't spoken, or only spoken in whispers. It isn't something people want to deal with, and I understand that. But a cancer diagnosis isn't the automatic death sentence that it used to be. And hearing that someone has cancer doesn't mean that it's best to just let them be alone to die a quiet death, alone.

I was thinking the other day about the few days after I was diagnosed. My parents had come to be with us, to help us keep an eye on the kids and see how they were handling it all. Mom and Dad were downstairs playing with the kids in the basement. I was upstairs in the kitchen, and dinner was just about ready. Instead of interrupting the time they were spending together, I just set the table on my own and served dinner, and then I called everyone up. My mom came up, the stairs and asked "Do you need help setting the table?" I told her, "No. It's all done."

Then I whispered to her, "Nice. Make the guy with f---ing cancer do all the work." She laughed, which is what I had hoped for.

I won't stop making jokes about having cancer, because I refuse to give cancer that kind of respect. I hope some day the rest of the world feels the same way.

World Record

You need to read this article. It's published in today's New Haven Register, and about 300 other newspapers. It's written by Chris Geiger, a Non-Hodgkin's Lymphoma survivor, in celebration (there's that word again) of World Cancer Day, which is today.

Geiger is trying to set a world record for “The most published feature newspaper article in one day — by the same author," and spread some awareness by doing so.

I'm not usually one to pass up on an opportunity to comment, but Geiger does a really nice job on his own. As if you weren't already aware enough, just by reading Lympho Bob, it's always good to hear more.

Enjoy.

Cancer-Sniffing Dogs

This article was published on the website Health Day on Monday: a Labrador Retriever can detect 12 different kinds of cancer, including colorectal cancer, which she does with 98% accuracy. Pretty impressive.

I like where the article leads, too: the idea that if dogs can sniff cancer, then the cells must be giving off some kind of detectable compound. If it could be identified in some way, maybe that substance, whatever it is, can be tested in an easy way (one that doesn't involve training dogs or conducting biopsies) and lead to earlier and more accurate detection.

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OK, as I'm writing this, Strudel is looking over my shoulder and scoffing. So I'm giving into her demands (because it's the only way she'll stop digging her claws into my shoulder) and letting her give her opinion about all of this:

Oh, thank you Cancer Boy, you so nice. I don't write for months, not since I show a video of my champion sister, and now I have to draw blood to say a few words. Danka. So sweet of you.

You know what else is sweet? Standard Schnauzers. And guess what? The orginal cancer-sniffing dog was...Da, da. Standard Schnauzer. Ten years ago.

Der Lab is very impressive. Yes, veryy impressive. But you whas iss wrong with Labs? They not so bright. Want proof? Here.

This Lab in the article about the cancer? Also not so bright. First clue? She learned all this at the "St. Sugar Cancer-Sniffing Dog Training Center." Iss made-up name or what? That's what other dogs do to Labs at the dog park. We say, "Hey -- you cant pee on that tree. Where's your pee-treeing pass?" And they like, "Oh, I didn't know I needed one." And you say, "O, da, iss 10 dollars," and they run all slobbery to ther owner and ask for 10 dollars and he gives it and you say OK now you can pee. And if thass not funny enough, you see them the NEXT DAY and they fall for it again.

So I know some Akita in Japan probably says to the Lab, "Hey, you want to be cancer sniffing dog? Da? 100 dollars. Come back here to St. Sugar Scool," and then they go behind a dumptser and the Akita says "Sniff that poop. Congratulations. You are graduate." I see that all the time.

The good thing is? This time the world got lucky and they found a Lab who could actually smell cancer. But there probably a couple thousand more out there sniffing poop thinking they went to medical school. Sad.

So thank the Schnauzers. And stay away from Labs. Never know when one sniffs you and tells you that you have cancer. This is why God created second opinions.

Thanks for the time, Cancer Boy. You so magnanimous.

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Um...you're welcome....