Thursday, February 28, 2008
Still running, too -- just not talking about it as much. I figured I should let you know, just in case you were worried I was losing energy or something.
I try to spend some time searching for other NHL patients' and survivors' stories online. I find all of that way more helpful than the more clinical stuff I get from some lymphoma sites. It's nice to read others' words about what they went through and how they are dealing with it, and I'm getting good at spotting any Negative Nellies before I read something that might depress me.
Over the last week or so, I've been reading a blog by a guy named Bald Mike. It's kind of amazing, the parallels in our lives: he's 40 years old (39 when he got his diagnosis), a professor (of public health, from what I can tell, at an unnamed school in Philadelphia), has a cute dog (Otis -- his blog goes on for over a year, so I've been reading a little at a time, starting at the beginning, and last night I read a post written by his dog. Ha!). He doesn't talk much about his specific type of NHL, but it seems like it's not follicular, maybe something more aggressive. He was on watch and wait for a full year before treatment. He's now finished with chemo, on Rituxin twice a year, and dancing with Ned (No Evidence of Disease). Good for him. I like those happy stories.
A couple of other parallels: he's a runner. After his chemo, he had a party for his friends that included his own 5k run and walk. (About 9 of them actually ran. I think he came in last. I assume my friends would let me win.....maybe....)
He also sees the value of humor in fighting cancer. In fact, his father had kidney cancer several years ago, and he wrote a piece that was accepted for National Public Radio's Morning Edition program, about how he and his father used humor to get through his father's initial diagnosis. NPR thought better of it, though, and withdrew the offer to have him read it on the air. So I can relate. I bet he'd love the Irish Guy With Cancer Joke.
It's amazing how this whole process works: feeling very alone at times, and then realizing that there are so many others in the same boat. When I first posted to the online support group, I got a bunch of responses from people who said the same thing. One man's standard greeting to everyone new to the group is "You are not alone!" and most begin their welcome messages to new people with "Glad you found us, sorry you had to."
And of course, I appreciate all of your support, too. It's nice to know that you're reading. As always, feel free to comment, even if it's just to say hello and wish me continued good news.
Now that I've mentioned Morning Edition, it's getting me thinking about David Sedaris, a very funny writer who first got noticed by reading his essays on the show. Isabel and I saw him a couple of years ago, reading from his new book. And in December, we saw a production of SantaLand Diaries, a play based on his experiences working as an Elf at Macy's in New York one Christmas. So here's a link to an essay of his called April in Paris, about his experiences living in Paris. (I'd like to SatanLand Diaries, but some of it might offend. Search NPR.org on your own if you want to hear it.) The link needs Real Player, in case you have to download it. It has some funny stuff. I recommend reading his books, too.
Busy weekend coming up. I may post something tomorrow, but then probably not until Sunday night or Monday.
Tuesday, February 26, 2008
Don't be fooled. I'm no angel.
You don't like it? Next time I see you, I'll bite you. Get my name right.
Yes, you, Nicole. And you, Scott. And even the Red Sox-obsessed, YouTube-loving Cancer Boy looking over my shoul
Easy there Sprinkles. That's enough. Go jump on the couch and bark at squirrels or something.
Sorry about that. Probably wasn't a good idea after all.
Monday, February 25, 2008
These visits begin with my having a blood sample taken. They have blood techs and analysis equipment right in the office, so we get the results in five minutes. As with the last visit, Dr. R said my blood was "perfect." Certain cancers rely heavily on frequent blood analysis (Lance Armstrong talks about this in his book), but that's less true with some lymphomas, including mine. There are about 30 different types of NHL, and at least two types of follicular NHL. One type behaves more like leukemia, and affects the blood significantly. My version affects the lymph nodes. (In fact, he said today that I had a fairly straightforward "classic" type of fNHL. Some behave so erratically that they're kind of thrown when they need to decide what to do. Mine doesn't seem to be like that.)
So while I don't have a blood-focused fNHL, they can still find some clues in my blood about possible progression of the disease. Red or white blood cell counts may be low or high, platelets may be low or high, there may be some signal that my kidneys or liver are straining to do their jobs, that kind of thing. Any of that could be a signal that they need to run some other tests. None of that was an issue this time.
In addition to blood work, they do a physical exam, checking eyes and mouth, and feeling for various spots where a swollen lymph node might be close enough to the surface to be able to feel (neck, groin, collar bone, underarms). Nothing new there. The initial spot near my hip bone is still swollen. The bump I thought I had felt under my chin turned out to be nothing. Probably an English teacher's well-developed jaw muscle. (My joke, not his.)
The other way they indicate progression, besides blood and swollen nodes, is by checking "B" symptoms -- weight loss, night sweats and chills, fatigue. Obviously, that needs to be reported by me in order for the doctor to think it's an issue. I haven't felt anything like that.
So, he's pronouncing me stable. I'll go back in a month for a similar exam. He said after that, we may go every two months. We'll also do period CT and PET scans to make sure there's nothing going on that we can't see.
So far, so good.
And while we debated about whether it would be better to be stable for a while, or begin treatment and feel like we're doing something, I'd say I was happier to hear that I'm stable.
I had questions for him too, mostly about the nature of fNHL, just to clarify some of what I've been reading.
I opened with this: "I was reading an article called "Folicular Non-Hodgkins Lymphoma Revisited" by Saul Rosenburg in the Journal of Clinical Oncology's February issue...."
And I could see the look on his face. It said something like: "I graduated with High Honors from Case Western Reserve, then at the top of my class at Yale Medical School, then was awarded a prestigious fellowship in Hematological Oncology. I didn't kiss a girl until I was 28. And yet, this guy is a bigger nerd than I am....."
He admitted that he hadn't had a chance to read the article yet, and thanked me for pointing it out to him. But he was obviously up on the issues that were in the article, and that's what I was really interested in. In particular, I wanted to know about the transformative nature of follicular NHL. About 30% of cases mutate into another, more agressive form of NHL. My question was, if we're only doing blood and physical exams, how will we know it has transformed? We need to actually see the cellular structure of the lymph nodes, don't we? The article said that knowing when/if that happened was very important, so treatment could be determined as soon as possible.
Dr. R said, basically, if a scan or a physical exam shows a sudden large swelling in one or more nodes, it's a sign of a possible transformation, and that would need to be confirmed with other tests.
I think he was impressed. He suggested an online search engine for medical articles that I might want to check out. Isabel thinks I was trying to show him up (and she said the self-satisfied grin on my face confirmed that), but really, I figured if he had read it, he'd know what I was talking about. It wasn't a "gotcha" thing.
(But, truth be told, I think he knows now who he's dealing with....)
Something to make a lot of you feel old:
I heard this morning that this year is the 25th anniversary of Michael Jackson's Thriller.
Is this still the greatest video ever, or what?
Sunday, February 24, 2008
We stopped into all three of the casino rooms at Foxwoods at various points during the day. Mike was good enough to steer us toward the non-smoking rooms, saying to me, "We don't want you to get lung cancer or anything." (See? That cancer humor isn't so tough, is it? Of course, if you already have a headstart on a sick sense of humor, it's a lot easier.)
We had lunch at the Hard Rock Cafe, perched underneath the shoes and socks of the drummer for ZZ Top. Mike was good enough to buy, so my brother, we'll just say we're even now and you won't have to pay me the $35 I won from you when we played pool over Thanksgiving. I hadn't forgotten.
Tomorrow morning, I meet with Dr. R, the oncologist, for my monthly follow-up. I'll give you all a report in the afternoon when I get a chance. I'm not expecting anything earth-shattering. I'm still not feeling any B symptoms (weight loss, night sweats, fatigue, etc.). I might have a little swelling in a lymph node in my neck, but I might also be imagining it, or it might not be deemed significant enough to say the Lymphoma is progressing. (We already knew the node was infected from the PET scan -- it won't be a surprise if it's swollen.) I'll get some bloodwork done, which could also show that things have progressed a little in ways that I can't see or feel.
But really, there isn't much he can say tomorrow that will throw me. I mean, what's the worst he can say? I still have cancer?
Isabel and I both said this morning that we're torn between hoping he says we're still on watch and wait for a long time, and hoping we can just start treatment and feel like we're doing something. More good news/bad news.
So we'll just see what he has to say. Tune in tomorrow.
Thursday, February 21, 2008
Last night, they weren't predicting much of anything until noon, but I woke up early and we already had an inch. I ran 2.5 miles, read a little bit, and by 8:00, we had three inches. Southern is closed for the day. The kids feel cheated becuase they had the week off anyway, so we'll throw them outside and then walk down the street for pizza at lunchtime. Should be fun.
The dog, however, is not much fun on snowy days. She wants to be outside playing in the snow (she's from a winter litter), so she's bouncing off the walls. Literally. It's a sight to see. She runs around the dining room table at full speed, then hits the patch of hardwood floor between the area rugs and skids into the wall head-first. Then five minutes later, when her dazed look is finally gone, she does it again.
Even some treadmill time isn't going to work off her schnauzer puppy energy today, I fear.
The timing for this diagnosis turned out to be pretty good, in a way. I'm finishing my three-year term as department chair, and for the first time in 17 years, I'm not teaching anything this semester. (And for the first time since spring 2001, I'm only working 12 credits, the equivelent of 4 classes, the standard work load at Southern -- I'm not teaching an extra class, or supervising internships, or working with someone on a thesis, or directing independent studies. Just doing what I'm required to do -- for once.) The English department is so large (about 100 teachers and 3000 students each semester) that I'm given 12 credits just for administrative work. For the last 2.5 years, I have taught a course every semester on top of the admin work, so I've been doing at least 15 credits, sometimes more.
So the timing has worked out well. I'm only working 40 hours a week instead of the 50 or so I've been working lately. It's a little less stressful, and the "extra" free time is letting me finally work on some writing that I haven't been able to do for a few years. It's nice to be able to write again. Part of the writing I'm doing is the scholarship that's a required part of being a professor. Some of it has been some non-academic writing projects that I've been putting off for a while.
But some of the writing has been about the lymphoma experience. The blog is part of that writing, of course. And I'm working on a couple of short pieces that I may submit to different publications about how the diagnosis has affected me.
Then there are some of the other pieces that I am envisioning that probably won't go anywhere. Given the lack of cancer humor out there, part of me thinks that means that there's a ready market for some of my ideas. But the rational part of me says there's a lack of cancer humor because most people won't find it very funny. Go figure.
One idea I had is based on Dr. Seuss's The Sneetches. If you don't know the story: some of the Sneetches have stars on their bellies, and some don't. The star-bellies think they are better than the others. So the non-stars get stars on their bellies, and so that makes the star-bellies want to remove their stars, so then that's the cool thing to do. Eventually they all change stars so much that they all get mixed up about who had or didn't have stars in the first place, and then they all get along and realize they're all the same anyway. It's a nice story.
So my idea is a picture book where, instead of stars on their bellies, the two groups have either Hodgkins Lymphoma or Non-Hodgkins Lymphoma, and they fight about who has the better color support ribbons, and then they come to some solution where they realize they're all in it together, except in my story there's some little illustration at the end that shows everyone with Non-Hodgkins is way cooler. But that seems inappropriate, so I'm still working on an ending.
My other idea is a version of the awesome 1979 classic "My Sharona" by The Knack. But my version is called "My Lymphoma." Sing along as you watch the video:
Ooo my little swollen node, my swollen node,
When you gonna shrink down, Lymphoma?
Ooo another doctor run, a doctor run,
My doctors are all over the town, Lymphoma.
Never gonna stop, I'm relentless
Oh I'm gonna beat you up, beat you senseless
You're my, my, my, my, my-a woo!
M-m-m My Lymphoma.
There's, like, three more verses in me, but that's what I have for now.
Wednesday, February 20, 2008
So here's a little video to give you something to do. It's part of an interview with Gene Wilder, who is a Non-Hodgkins Lymphoma surviver. It's about 8 minutes long, and opens with the "Puttin' On The Ritz" scene from Young Frankenstein. He talks about meeting his wife, and then, about 4 minutes into it, he talks about his NHL. He had chemo, then saw a specialist at Sloan-Kittering, who told him it would likely come back, and recommended a stem cell transplant. (Stem cells can come from other compatible people, or from oneself, if your own blood is clean enough.) He's in complete remission now.
Enjoy the video.
Tuesday, February 19, 2008
We had a good weekend. We took a "mini-vacation" to Rhode Island because, well, any vacation in RI has to be a mini one.
The kids have off this week for February break, and while Isabel and I have to work this week, we did have yesterday off for Presidents Day. So a few days ago, we decided we could all use a little break, so we planned an overnight trip for Sunday and Monday. We went to the Roger Williams Zoo in Providence.
(With John as our son, we're Zoo people -- we've been to zoos in Connecticut, Massachusetts, Rhode Island, Maryland, DC, Oregon, Missouri, New Jersey, Ohio, Florida, New York, etc. etc. Wherever we travel, we need to find a zoo to visit. As a future zoo owner, John likes to compare exhibit designs. He has a very critical eye for such things.)
Sunday was a nice day for February -- about 40 degrees. There were maybe 10 people in the entire zoo, so we had the run of the place. Worked out well -- we'd walk around for 10 or 15 minutes, then we'd come to an indoor exhibit and warm up, then head back out. Their giraffes had two babies last spring, and they showed a video of one of the births in the giraffe house. Amazing -- the baby drops six feet onto its head. I was going to YouTube that and provide a link, but I'll let all of you do that on your own if you're so inclined.
Then we stayed at a hotel overnight and the kids swam. And swam and swam and swam. They love the water, and the chance to hang out in a hotel pool was really the reason for going away. They enjoyed the pool and the small 100 degree whirlpool next to it.
The kids were great -- minimal complaining and fighting, and they all dropped off to sleep right away Sunday night. We needed this.
Gearing up for my visit with Dr. R, the oncologist, on Monday.
Saturday, February 16, 2008
1) Lots of people found that cancer joke funny, but few would admit it, and those who would admit it said they felt guilty afterwards for laughing. To me, that makes it even funnier.
2) Apparently, I know a lot of people from different parts of the country who could secure me some high quality doobage, should I need it.
Let me be clear: I don't need it. I'm an athlete, remember? Didn't you see the pictures from a couple of weeks ago? And as a runner, I model myself more on Bill Rodgers than Bill Lee, as Boston-area icons go. Seriously, though, I have really good lungs, and I need them to run, which is very important to me. So thanks for your efforts, but Just Say No!
Now, if someone could score me some high-quality curcumin, that would be a different matter altogether....
Thursday, February 14, 2008
I want to mention my brother-in-law Tom's comment from the last post. Tom suggested that my "Today I'm feeling" statements need a little more creativity. I say, "Stop picking on me. I have cancer."
I've actually been using variations of that line a lot, and I've found that it occasionally gets me out of having to do things. But only occasionally. We went out for a beer with some friends this weekend, and there weren't enough chairs around the bar table for all of us. Since we got there last, I had to say to them, "Oh, sure, make the guy with cancer stand up." Of course, they know me well, and weren't buying it. "Yeah, right. The guy runs a 5k up a mountain but he can't stand up for a few minutes." Nice.
I use it on my mom a lot, too. When mom and dad left Moday morning, I wasn't dressed for work yet. I told mom I wasn't going to work, since I had cancer, and no one could make me. But I used slightly more graphic language. She laughed, and then said, "Who would have ever thought I'd be laughing at the word 'cancer'?"
But what's the alternative? Crying? I've already done enough of that for now. I'll do more later, I'm sure. But laughing in its face, relentlessly, seems like a better option for the moment. There's plenty of research on the benefits of laughter, so I'm going with that particular alternative therapy while I watch and wait.
There's really not a whole lot of cancer-related humor on the internet. I've looked, of course. There's a nice article called "Does Cancer Have a Sense of Humor?" that discusses the benefits of humor, though it also is very clear that such humor is not for everyone. Another cancer humor site , "Are you Ready for Cancer Jokes?", urges people to read its introduction before they actually look at the jokes. Some things just aren't funny to some people, and some things just aren't funny, period. I'm guessing if/when my lymphoma progresses, my perspective on humor will change. But for now, I'll share this particular joke, from a Cancer Humor web site. I'll cut and paste, rather than send a link:
An Irishman named Mike O'Leary went to his doctor after a long illness. The doctor, after a lengthy examination, sighed and looked Mike in the eye and said, "I've some bad news for you... you have a cancer known as Galloping Leukemia and it can't be cured. I give you two weeks to a month."
Mike, who was shocked and saddened by the news, but of solid character, managed to compose himself and walk from the doctor's office into the waiting room. There he saw his son, who had been waiting. Mike said, "Son, we Irish celebrate when things are good and we celebrate when things don't go so well. In this case, things aren't so well. I have cancer and I've been given a short time to live. Let's head for the pub and have a few pints."
After three or four pints, the two were feeling a little less somber. There were some laughs, some tears, and more beers. They were eventually approached by some of Mike's old friends who asked what the two were celebrating. Mike told them that the Irish celebrate the good and the bad. He went on to tell them that they were drinking to his impending end. He told his friends, "I've only got a few weeks to live as I have been diagnosed with AIDS." The friends gave O'Leary their condolences and they all had a few more beers.
After his friends left, Mike's son leaned over and whispered in confusion, "Dad, I thought you said that you were dying from cancer. You just told your friends that you were dying from AIDS."
Mike replied, "I am dying from cancer, son. I just don't want any of them sleeping with your mother after I'm gone.
Now, really, that's just sick and wrong on a bunch of different levels. But I laughed out loud when I read it anyway.
I actually love Tom's idea for the "I'm Feeling" statement: using Simpsons characters to represent how I feel. Of course, now I can't use Tom's idea, since it's too brilliant to steal, so I'll have to come up with something else. I'm open to any suggestions you all might have.
My best wishes for good travel go out to my friends Nicole (known to readers as CocoVertigogo) and Cindy, who are off to San Francisco tomorrow for an academic conference.
I have a favor to ask Joe and Christine, my Northern California in-laws: I've asked Nicole to try to score me some medicinal marijuana. If she gets caught, do you know a good lawyer she can call? Even an average lawyer would be fine -- like, someone who advertises on the subway or something.
Thanks in advance.
Monday, February 11, 2008
Still running. Cut it short again this morning -- high winds outside woke the dog up way too early, and so I had to take her downstairs with me while I hit the treadmill. Otherwise, she'd have sat at the bottom of the stairs and whined until one of the kids came down to see her.
So instead, I had her with me. Strudel is actually a fan of the treadmill. When the weather is nasty, we put her on it for 20 or 30 minutes. She really likes it -- works off some of that puppy energy. We got the idea from The Dog Whisperer, Ceasar Millan, who has a show on the National Geographic channel. It's a great workout for her, because she also uses some mental energy focusing on looking forward. If she turns to the side on a moving treadmill, well....it's not good.
Anyway, this morning, I think she wanted a turn on the treadmill, so she just sniffed a lot and stood behind me where I couldn't see her, whining a little. She must have tried to jump on at one point, which is not easy to do when I'm running at a 9:30 pace. I couldn't see her, but the treadmill belt kind of jumped a little, and she screamed and jumped up on the couch. There may have been a small bald patch on her beard. Not really sure.
About the blog: I changed the security on the "comments" so that anyone can make a comment now. It used to be that you had to be a registered Google user, but now anyone can add something without signing in. Just be sure to sign your name at the bottom of the comment so I know who you are. I appreciate all of the comments and the e-mails. I know the initial shock of it all has worn off now, and watching-and-waiting doesn't make for much to say, but it's nice to get even a quick "hello" every now and then. They mean a lot. And thanks to those of you who have called or e-mailed Isabel. A quick hello helps a lot there, too, just to see how she's doing.
A couple of interesting things from the on-line support group this weekend that were very encouraging.
First was a post from someone new to the group, a 63 year old woman who calls herself "Tarzan." She chose that name because her oncologist said that Follicular NHL folks are like the Tarzans of the cancer world -- there's always another vine to grab on to. New treatments, new options, new successes. It was nice to read.
Someone else posted a link to a short article from the February issue of the Journal of Clinical Oncology by a doctor who has been researching follicular NHL for almost 50 years. He did a kind of review of significant changes in fNHL over the last 25 years. It's written for other specialists, of course, so I don't get a lot of what he's saying (I'm going to bring a copy with me to my next appointment to get some answers). For him, the biggest change in research has been in the increased awareness of the transformative nature of fNHL: it starts as something fairly non-aggressive, but then can take on a different, more aggressive form. Catching the transformation, and deciding on an appropriate course of treatment, are key. This reaffirms the appropriateness of the watch-and-wait approach, since treating the fNHL won't necessarily do much, since it often comes back, and then requires another round of chemo (and the time, money, and pain that goes with it). Watch and wait allows the doctor to see if it has transformed.
Also encouraging are some new numbers. Up until now, the most recent numbers for survival rates had a median of 10 years; this is the figure listed on Wikipedia and elsewhere. As I said in a post a little while ago, Dr. C the specialist told me that anything on the internet is already out of date. Recently published figures show a new median of 15 years, with another study showing 18 years. Advances in biological therapies (a drug called Rituxin that boosts antibodies without many of the horrible side effects of CHOP and other chemo treatments) are a big reason for the increased survival rates.
Of course, "median" means half are better and half are worse, so it's all still a big unknown. But it's all reason to be positive, too. The plan remains to see the oncologist monthly, so any transformations in the fNHL should get caught early, but that all depends on what it transforms to. But...but...but...but...Still in that good news/bad news cycle. But it's all reason to stay positive.
Thanks to Mom and Dad for watching the kids this weekend, and for the new red running shirt with RELENTLESS emroidered on the sleeve. Can't wait for nicer weather so I can wear it.
Friday, February 8, 2008
I think it's getting to the kids a little bit, too, especially Peter, who was the only one who seemed to have avoided a breakdown up to this point. Well, it finally came. Last Sunday, when the Patriots lost, he took it very hard. He's a die-hard Pats and Sox fan, but I think at least some of his reaction was just three weeks or so of build-up from all of this, and he finally let it out. So he's been a little bit up and down this week. John and Catherine, too, though it seems less so for them because they've been that way from the start. John's birthday was Tuesday, so that helped brighten up the middle of the week, anyway.
It's a stressful time of year overall. February doldrums. Even the dog is itching to get outside, so she's getting into trouble now, too. All three kids are also scheduled to compete in the Connecticut Young Musicians Festival in a month or so, so they're stressed about their performace peices. All three will play piano. It's a non-competative, judged event, so they'll play two pieces and then two judges will give them scores between 1 and 5. Peter has scored perfect 5's for two years; John had 5's last year. This is Catherine's first year. They'll do fine -- they went through this same stress last year -- it's just a little harder and more stressful this year with everything else going on.
(In other music news: Peter auditioned a couple of weeks ago for the All-State Bands in alto sax. It's for all of the Catholic schools in Connecticut, grades 5-8. There are four levels, and he was chosen for Symphonic Band, which is second highest. Impressive for a 5th grader, since this is the first eyar he could try out. Any of you who knew him as a baby knew even then how musical he was. The band will give several concerts this spring, including one in front of Lincon Center in New York City. John and Catherine are both singing in their choirs this week. Catherine has a brief solo. It's nice to have a house full of music. Cheers things up. Except for when they bang the keyboard in frustration.....)
Isabel is handling things well, keeping me positive when I start to feel down, but I'm sure the stress of waiting gets to her, too. Send some love her way sometime.
My parents are coming for the weekend, so that will help distract the kids a little, maybe get them out of their mini-funk. February vacation is coming soon. That will be nice, too. Maybe we'll plan something extra special for that.
Busy weekend for me and Isabel, so I probably won't post again until Monday.
In the meantime, while you're watching and waiting, try watching this. I promised a friend I'd give a shout out to Tom Jones, so here it is. Watch the whole thing -- the freaky dancing at the beginning is repeated at the end. Plus, for the first time, he gets to kiss two sisters!
Wednesday, February 6, 2008
Ran 2 miles this morning -- my first run since the 5k on Sunday. My legs had been hurting a little bit, so I took it easy today. I actually did some weight lifting yesterday. Again, nothing too heavy. It had been almost 2 months since I'd done any lifting, and I figured I should get back into it, if only because I really don't want my shoulders to fall asleep next time I have a PET scan.
I had a follow-up appointment with the Gastro doctor on Monday.
A little background: I turned 40 on June 8th. It was a Friday. The following Monday, I went to see the doctor about my bronchitis. (I maintain that once I turned 40, I started to fall apart.) Over the next month and a half, I went back two more times because the bronchitis wasn't going away. In late July, while on vacation with Isabel's family, I could barely make it up the stairs without losing my breath, so I saw a doctor and was diagnosed with pneumonia.
It cleared up fine, and then in October, I started feeling a kind of shortness of breath again, more like a tightness in my chest behind my sternum. I had an x-ray and a CT scan, and the doctor sent me to a Pulminary specialist. He gave me a breath test, which didn't turn up any problems, and my blood oxygen levels were good. (I was still running during this time with no problems.) The CT scan showed a spot on my lung and an irregularity in a lymph node in my chest. He was fairly certain all of that was left over from the pneumonia. We scheduled a follow-up CT scan for January to make sure the node was going back to normal.
In the meantime, he asked me to keep track of when I was feeling that breathlessness/tightness. It became obvious pretty quickly that I was getting that feeling about an hour after I ate. The symptoms were consistent with GERD, Gastro-Esophogeal Reflux Disorder. I was put on Nexium and sent to a Gastro specialist.
Eventually, I had an Upper GI endoscopy done, so the Gastro doctor could look at my esophogus and stomach. Everything looked OK on the scope. (In fact, I had the scope done the day I heard about the NHL diagnosis.)
When I met with the Gastro doctor on Monday, he said it seemed like there were two issues going on at once: I definitely had symptoms of reflux, and I'll stay on the Nexium. But he couldn't find any explanation for the breathless/tightness feeling.
I asked if it could be related to the swollen lymph node in my chest, and he agreed that it could be, though he wouldn't say for sure because that's not his area of expertise. Well, in my reading over the last few days, I've found that it's a common symptom of NHL to have a node in the chest swollen enough so that it bumps the trachea or other things in the chest and gives those feelings of breathlessness or tightness.
Fascinating. It seems the mystery may be solved. It's obviously not affecting my lungs (the 5k proved that), but it feels like it is.
And while that's still not confirmed, it's nice to have something close to an answer for why I've felt that way for a few months. I can't blame anyone for a misdiagnosis; the lymph node swelling after pneumonia is a very reasonable explanation, and the other GERD symptoms were there, too. And already having heard about one irregular lymph node from October, I was prepared to leap into action when another one popped up -- lots of people may have just ignored it. Runners get swollen nodes all the time from leg injuries, from what I've read, and they're usually dismissed as part of the lifestyle.
So, in a sense, my chicken-wing-habit-induced GERD might have helped me catch the NHL a little earlier than I might have otherwise. Thank you, my weak esophogus!!!!
Monday, February 4, 2008
Official results are here. I came in 158th out of 339 overall, 23rd out of 34 in my age group (male 40-49). My offical time was 27 minutes 17 seconds, which put me at 8:48 per mile. Still feels pretty darn good a day later.
To the left: Andrew and I getting ready for the start.
Here I am crossing the finish line. Nicole's comment yesterday said I didn't look tired, but you'll notice I couldn't actually work up a smile.
My beautiful family congratulating me, and keeping me from falling down.
We left soon after, because Isabel thought it would be rude of me to stand at the finish and say, "Hey -- number 197 -- you got beat by a guy with cancer!" to everyone who finished behind me.
Sunday, February 3, 2008
Because I did.
This morning, I ran in the Run for Refugees 5K race at East Rock Park in New Haven: the first half uphill, the second half downhill. I finished in (roughly) 27 minutes and 15 seconds -- a personal record for me in 5k races, by about a full minute.
For what should be obvious reasons, running in this race was really important to me. Isabel thought I was nuts when I said I wanted to do it about five weeks ago, even before for the lymphoma diagnosis, since it was (1) in February, and (2) up a big hill. Once I was diagnosed, she understood why I needed to. If nothing else, it was just too symbolic to pass up.
The race benefited IRIS, Integrated Refugee and Immigrant Services, a coalition of groups in New Haven that supports political and other refugees who relocate to the area when they flee their home countries. They usually come to America to escape violence, and they often arrive with nothing. A good cause.
The race went up East Rock, a New Haven park (nice picture of the park here). The total elevation is 366 feet, and the road up is decently steep, winding its way up the hill, maybe a 6-8 percent grade, when I compare how it feels to running on the treadmill. The race started at the base of the hill, and was flat for about 200 yards, and then went slowly and steadily steeper. The whole race was 5k (3.1 miles), so the first mile and half was uphill. I did well for the first half. Hill running is all about leg strength, which has always been a high point for me. I started closer to the back of the pack, and slowly passed a bunch of people on the way up.
The second half was all downhill, with a couple of small uphills here and there. You'd think running downhill is a snap, but it really isn't. Your knees take a beating because you're slamming down harder than usual, and the front of your thighs hurt because you're always kind of tensing them up to slow yourself down a little so you don't go so fast that you lose control. I was hoping I'd catch my breath on the way down, but I never did.
They gave split times -- telling how you were doing at 1 mile and 2 miles -- so I knew I was on pace to set a PR (personal record). At about 20 minutes, I started to get really tired. My plan had been to go hard for the first half and ease it up for the downhill, but I should have known better. By 22 minutes, I knew I was getting close to the finish, and I really wanted to just ease up. A minute later, a woman running with a small dog passed me. I'd heard that stupid dog's tags jingling behind me for a couple of minutes, so I knew they were coming, but I just didn't have the juice to stay ahead of them. When they passed me, I started repeating to myself "Relentless...Relentless....Relentless," the slogan on the Lymphoma Society's red bracelets. It got me to the finish line. Isabel and the kids were waiting, along with our friend Nicole, and another friend from Southern, Andrew, who also ran the race (and beat me by about three or four minutes).
I was pretty darn pleased with the time. Uphill races aren't usually known for allowing people to set personal records, so that made it even nicer.
And you can't beat the symbolism. I'm reading Lance Armstrong's memoir, It's Not About the Bike: My Journey Back to Life, about his battle with cancer and return to win the Tour de France, recommended to me by my brother. Lance was, of course, known for his expertise in riding hills -- mountains, really, since it's in the Alps where he separated himself from the pack. The book jacket has a nice excerpt, of him thinking about his life as he's attacking a mountain. I like the whole "uphill battle" symbolism, but I like the downhill difficulties that I felt, too. Follicular Lymphoma is such a strange disease that it's a good reminder to not get too confident when things are going well, because the "easy" downhill parts have their own problems, too.
I sometimes run races with some friends from work. We call ourselves the West Central Pennsylvania State University Track and Field Team -- the Fighting Geese. That's all from a novel called Straight Man by Richard Russo, about an English Department, and especially its chairperson. Russo used to teach at Southern, and it's pretty clear that certain characters and situations are based on people we know. A very, very funny book.
Anyway, Geese, I thought about mentioning the race to you all and trying to get the team together. But I really needed to run this one alone. It was nice to have Andrew there. We started together, and he kept me distracted before the start, which was great, and then he took off ahead of me pretty quickly, which was also fine. But I needed to focus on myself today. We'll have other races to run together soon enough this spring.
When (if) the official results and any official photos go online, I'll put up a link. For now, I'm going to take a nap, and then get ready for our Super Bowl Party. Go Pats.
Stay Positive. Stay Relentless.
Friday, February 1, 2008
Ran 3 miles this morning. Went harder/faster than I had in a while, certainly since I started the blog. It felt good. I was pretty pleased.
Sorry I haven't had much to say lately. Partly it's because there's just nothing new to report, and partly because I've been trying to stay busy. Keeps my head in a good place.
To start, a joke. Not one from the online support group, but one of my all-time favorites:
What do you call Batman and Robin after they've been run over by a steam roller?
Flat man and ribbon.
I bring that up because I've been doing a little research on "support ribbons" for NHL, known as "ribbons of hope." You've seen them (maybe even wear one): the small lapel ribbons that show support for a particular cause or specific cancer. The pink ribbons for breast cancer are maybe the most common.
I was curious what "our color" was -- those of us with NHL. I found a ribbon online, lime green. Don't know why this is the color, but you'll notice a few things if you look at the link: one is that this is a ribbon for a bunch of other causes, too, including Lyme Disease, which probably makes the most sense. Also, you'll see that red is an alternate color for lymphoma.
I don't know who decides these things, if there's some central agency that decides on which causes get which colors. I'm pretty sure there isn't, because if there was, there wouldn't be so much confusion over who gets which color. Pink makes sense, I guess, for breast cancer, since it is a predominantly (though not exclusively) "female" cancer. Of course, there isn't anything inherently feminine about pink. (Did you know that before world war I, pink was the boy color and blue was the girl color? My students find that kind of thing just fascinating.)
So I wanted to know if it was lime green or red that I should be wearing. I thought maybe I'd get myself a new running shirt in that color. There are lots of places that use lime green as the color for NHL or for all types of lymphoma, including a site that offers hundreds of NHL-related gift items, my favorite being this line of "Lymphoma Sucks" t-shirts.
But then it gets tricky. Apparently, purple is the color for Hodgkins Lymphoma. Some people have put out purple items for all Lymphomas (maybe not knowing that there's a difference?). To further complicate things, the lymphoma society has a fundraising running team that wears purple.
So in my research, I came across a posting on a message board about this topic. One poster said that purple was the color that is used for all cancers, like if there's some event that tries to raise funds for cancer research in general. Another person who posted was offended because she has bought a bunch of purple stuff thinking it was for NHL. She wanted her color.
I understand the impulse. We all identify with colors -- national flags, sports teams, political affiliations. It's shorthand for who we are. So to be wearing the wrong colors can be frustrating, maybe even offensive.
It gets worse. The lime green/purple controversy was bad enough, but when the Lymphoma Society merged with the Leukemia Society, they went with the color red, since they're all technically blood-related cancers. Red had been the leukemia color, so some NHL people were offended that they were being lumped in with something else. The society started (unofficially) endorsing a red and white combo ribbon to signify both types (leukenia/red and lymphoma/white), but this bothered the purple and green advocates, plus the goldenrod yellow folks, since that had been in the Lymphoma color for some local chapters of the Lymphoma Society.
The Leukemia and Lymphoma Society national office actually held a special meeting to decide on colors. Since they also cover Mylenoma, they decided on a three-colored ribbon: gold, green, and blue, to represent the three cancers.
Six months later, they decided to reconsider the issue. It looks like they've settled on red; their official wristband is red, with the word "Relentless," which is kind of cool. But there are still lots of products out there in lime green, specifically for NHL.
I will say that I'm much more likely to find a running shirt in red than in lime green, so I should be happy about it all.
I'm going to research some more. I think whatever article I write on the topic will make a great sabbatical proposal: Visual Rhetoric and Representation in "Ribbon of Hope" Color Choices.
One more quick thing:
Please be careful about what you read online about NHL and follicular NHL. There's lots of stuff out there that isn't exactly wrong, but it's misinformed or oversimplified.
Dr.C, the specialist, told me Monday that anything online is already out of date, meaning that advances in lymphoma research are moving along. Many treatments are still unproven, but in testing (like that cool vaccine thing). So information about treatments, prognosis, etc. means nothing. By the time I need treatment, there could and probably will be new options.
The other thing to remember is that follicular NHL is somewhat unpredictable. It grows very slowly, but can also speed up and even change forms. I'm in watch and wait mode for the moment. I read a post yesterday on the online support group from a woman who has been in watch and wait for six and a half years. The lymphoma hasn't progressed enough for treatment. Some do progress quickly, of course. But fNHL (as folliculr NHL is known) is notorious for waxing and waning: a scan shows progression of the disease, and then a month later, nodes have shrunk. My own CT scan from October showed an enlarged node in my chest at about 2.3 centimeters. The January scan showed it at 1.5 centimeters. Could be explained by the scans having been taken at two different radiology centers. Or it could have shrunk. My next scan may show it enlarged again. It's not enough to come to any kind of conclusion.
The point is, take what you can from WebMD or Wikipedia or whatever, but don't treat it as gospel truth.
This could be a long, long haul, folks. Above all, stay positive. I need that more than anything. And all of this has been a reminder to myself as much as to you.
Check back Sunday afternoon. I'll have something interesting to tell you about.