I've Been Reading a Blog

Feeling good. Still no icon to tell you so.
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.

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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.

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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.

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Busy weekend coming up. I may post something tomorrow, but then probably not until Sunday night or Monday.

Guest Blogger: Strudel

My adorable little puppy Strudel asked if she could post an entry on her own. She made a persuasive case: I've mentioned her a few times and haven't given her a chance to speak for herself. So here she goes.

(She asked that I put her words in bold and italics, because she thinks it makes her look strong and fast. Whatever.

Also, she's a schnauzer, so she slips into German occasionally. Any typos aren't her fault; we need to trim her nails.)

Guten Tag. Good day.

My name is STRUDEL.

My name is not Schnitzel.

My name is not Stroganoff.

My name is not Pastry.

My name is not Sprinkles.

My name is not (heaven forbid) Schnoodle. That's the name of an inferior mutt of a mixed breed. Unholy things.

My name is Strudel. I am looking at you, Nicole M. And at you, Scott E. Get it right or suffer the conequences. Weizenheimers.

Consequences, you say? Da, consequences. Keep it up, and I will bite you. Don't believe me? Take a look at these choppers. That's not me, it's Arnold, probably a cousin. But still. You get the point.

You keep up with your sassiness, I'll chew you up like you were a dinosaur. Again, that's not me. It's Stanley. Probably also a cousin. But still.

Who am me? This is me.

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.

Good Doctor Visit

Saw Dr. R, the oncologist, this morning. The quick summary is that I'm stable -- no changes in my health, how I'm feeling, or anything physical or blood-related. That's all good news.

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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....)

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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?

Gamblin' Man

Thanks to my brother for lunch yesterday. He and I met at Foxwoods casino, which is roughly halfway between the two of us, near the Connecticut/Rhode Island border. I lost most of my money on slot machines and video poker (but not as much as my brother), but I'm comforted by the fact that a large slice of CT's state budget comes from slots at our two casinos, so I feel like I did my part. I made sure that I saved enough cash for a Dunkin' Donuts coffee for the way home.

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.

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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.

What I'm Working On

Snow day!
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.

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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.

Gene Wilder

Not much to tell you about today. Busy work day after a long weekend -- lots waiting for me.

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.

Good Weekend

Feeling good, but still no cool icons to let you know that. I'm working on it.

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.

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Gearing up for my visit with Dr. R, the oncologist, on Monday.