Wednesday, April 30, 2008
First, Strudel and I ran again this morning. She did much better this time. We ran on a hilly course, so she probably appreciated that I was slowing down, too. There was much less need to pull her with me this time. It was still not a terribly intense workout, but we're building up. She actually woke up at 4:15 this morning, barking about something. I like to think she sensed the energy in the house from the impending workout.
Second: some fascinating cancer research in the news. Scientists are testing a technique using iron oxide particles to destroy cancer cells. The particles are attached to antibodies (something like the NHLer's best friend, Rituxin). The antibodies will attach to cancer cells, as they are designed to do. The patient is then placed into a "light oven," which uses infrared light to heat up the iron oxide attached to the antibody; the heated iron oxide then kills the cancer cell. Here's the story. It's from a British newspaper, so it's either deadly serious, or part of an elaborate Monty Python skit.
And since the comments are so few when I discuss something serious like new cancer treatments, I'll give you something juicier to discuss: a bogger's list of the Ten Cheesiest Singers of All Time. And I'm not ashamed to say that at one time or another in my life, I've owned music by 8 of the 10.
Monday, April 28, 2008
Last summer, Peter and I went to a Sox game. Before the game, we got to see the taping the pre-game show on a stage set up outside of Fenway. Jim Rice was one of the analysts for the show. The picture to the right shows Peter leaning on the stage, behind the cameras, watching the action. The man in the red shirt in the middle is Jim Rice.
Here's a close-up of the action, as they're shooting the show. Nice picture of Rice. He's still a monster -- could probably hit a ball 400 feet even at his age. The man with the microphone is Sox President Larry Lucchino -- a Non-Hodgkins Lymphoma Survivor. Two World Series rings for him -- talk about your Nodes of Gold!
Peter and I really enjoyed the game. We had gotten him tickets for his birthday last year. This year, we have promised a weekend in Cooperstown to see the Hall of Fame, which he is very excited about.
Peter's birthday was yesterday, in fact. He knows the harrowing story of his birth, and knows that he was born about 9:30 at night. Isabel and I were in bed early last night, exhausted from a weekend of baseball games and practices. But at 9:30, we heard Peter call out "Yes! It's Official! I'm 11!" And then he went to sleep.
OK, enough about Jim Rice. Back to the cancer thing.
Friday afternoon, I attended a Research Seminar at Southern. (I actually went there not to see my colleagues talk about their research, but to track down a Dean and Vice President to talk to them about something I needed an answer to that afternoon. I ended up chasing the VP across campus when he tried to sneak out of the seminar. I'm told he returned a little later to see the rest of the event.)
Anyway, I chatted some with a friend who teaches in the Public Health Department. She was presenting a research project on exercise and breast cancer patients. She and some colleagues did surveys and interviews of some women undergoing breast cancer treatment and some who have finished treatment. Fascinating stuff. She found that, of course, doctors encourage these women to excercise. But women who are going through treatment, who weren't already regular exercisers, did not get much benefit from exercising. Basically, they had so much going on in their minds and bodies that scheduling a workout just added more stress, and was counter-productive. Those who were done with treatment took to exercise much better; they had more energy and more incentive to stay healthy.
Very interesting, and a nice reminder that there is really no one-size-fits-all approach to any part of this experience. I love research like that, research that challenges conventional wisdom. Keep that in mind when you read stuff online about NHL. Some stuff just feels right, even if it seems wrong. Like that whole "watch and wait" thing.
I, on the other hand, am still running, and enjoying the physical and psychological benefits. In fact, this morning, I ran outside for the first time (other than the races and the Florida runs ) since the fall. It felt good. I like the treadmill well enough; I usually watch movies while I run, and I can play with speeds and inclines to keep me interested. But being outside is really a little nicer. More challenges, better scenery.
Even nicer -- I took Strudel out with me for the first time. I've wanted to run with her for a while. Our vet said we should wait until she's at least 9 months old before taking her on extended runs, maybe a little older, to make sure her hips are fully developed. I wanted to start running with her in the fall, but then I started with the weird breathing problems that eventually led to the NHL diagnosis, and then the weather got colder, so she and I never did get to run together.
She does love to run. At the dog park, she has some buddies that will play chase with her. So I thought I'd tap into her natural doggy desires to run.
I was a little surprised at the results. She couldn't keep up with me. Seriously.
My plan was to warm up for about 5 minutes, and then do some sprints, which are her specialty -- you should see her go at the dog park. Our neighborhood is set up in a grid, so for a workout like today's, I usually run around the perimeter of the neighborhood to warm up, and then do half a street in a sprint (takes about a minute), and then jog or walk the second half. Then I'll go over to the next street in the grid and repeat.
So today, I did my warm up jog around the perimeter of the neighborhood. But by the time I got to my first sprint, Strudel was having none of it. She didn't stop dead, but she wasn't sprinting along like a demon, the way I expected her too. More of a slow jog. So I did a sort of half-speed-sprint, dragging her behind me. That kept up with the rest of the sprints. By the end of the workout, I was mostly jogging along, with her about six feet back, looking back at me with a little scowl on her face. This was clearly not how she had planned to spend her morning.
So we probably did about 2 miles total, nowhere near as intense as I had planned. With the way she was behaving, I figured she would collapse in a corner when we got back to the house. But no.
Instead, when I let her off the leash, she ran into the living room and sprinted around the coffee table, then ran to the dining room and sprinted in circles there. Every time I tried to bend down to pet her and calm her down, she went down on her front legs, in that "play with me" pose, barked at me, and then took off again for another sprint around the house.
Why was she so lazy on the run and then so energetic afterwards? Either she's nuts, which is a real possibility; or maybe she hates running with me and was happy to done with it; or maybe she had achieved the elusive "runner's high." The "runner's high" usually happens to runners about 20 minutes into a workout. As I understand it, running is fairly punishing to the body. After a while, it starts to hurt. The brain, at that point, says, "Well, if we're going to keep this up, I better do something to make it feel better," and signals the body to send out "feel good" hormones called endorphines. This results in a sudden rush of feeling good -- the "runner's high." Not all runners achieve this state -- I sure as hell haven't -- but apparently Strudel has. Either that, or she's nuts. Or she hates me. Whatever.
The endorphines didn't kick in for her right away -- not until we got into the house. Before that, she was obviously hurting. Personally, I felt great; it was a fairly easy workout for me. But poor Strudel was doubled over, clutching her side, panting, and saying, "You...must...let...me...blog...ab...out...this...."
So I assume you'll be hearing from her soon.
Friday, April 25, 2008
I had said last Friday that the blog was kind of like my therapeutic journal, but that I didn't get into my "deepest thoughts and feelings." Tom asked for a sample of those thoughts and feelings, and I said that "one of my deepest thoughts involves locally-grown produce from a co-op, an old Apple IIe computer, and the drummer 'Animal' from the Muppets band." Mary commented that it was interesting that my thoughts involved cartoon characters and puppets.
And that's where my brother chimed in:
Perhaps you forgot that my brother based his doctoral thesis on bugs bunny cartoons. Then he proceeded to milk it for about 5 years by delivering it at various "academic" conferences. As for his inner thoughts - he's not revealing them because they would probably be a big let down. Since I've known him his whole life, I can tell you he's not as much of a deep thinker as he's led most to believe. His inner thought track usually plays the following thoughts in a continuous loop - Jim Rice, Sunday NY Times, Jim Rice, Three Stooges, Jim Rice, Eggplant, Jim Rice, Jim Rice, Jim Rice, Jim Rice, Jim Rice, Eggplant.......and so it goes. Was I close Bob?by the way - Rice will never make the HOF. You know it. Time to face up to it. Mike
I don't plan on mounting a full defense of Jim Rice's Hall of Fame eligibility. Excellent writers have done that already. Even some blogger for the New York Post (who makes a frighteningly detailed case).
However, feel free to sign the online petition that will help him make the Hall next year.
(And if you don't know who Jim Rice is, he's one of my childhood heroes, a former Red Sox DH and left fielder who was the most feared hitter of his generation. Don't confuse him with the Jim Rice who is in the Motorcycling Hall of Fame. Different dude.)
As for my love of the Stooges and for a really good eggplant parm, well, those things go beyond "thoughts." So technically, they aren't part of my thought stream. No, they are now more like a part of my genetic makeup.
(Which might actually help explain the cancer. Look under a microscope and you'll see a tiny little Moe-like lymphocyte hitting a little Shemp-like lymphocyte over the head with an anvil or something.)
Now see what you've done, Mike? I've got work to do. I can't go You-Tubing the Stooges all morning, darn it....
Wednesday, April 23, 2008
Looking good, Nicole!
I met with Dr. R yesterday. He gave me a few more details about the PET scan, but the overall picture was what he told me over the phone -- still stable. As I mentioned, the one node in the chest has gone from 2.3 cm to 1.0 cm since November. The one under my arm measures about 1.1 cm. He said anything under 1.0 is considered normal, so that one is just barely abnormal. He couldn't get a measurement in the hip areas; there are bunch of swollen nodes there (he called it a "grape cluster"), so it's hard to tell on the scan where one ends and one begins, plus it creates an irregular shape, and there's just too much math involved for either one of us to figure out a number for the size. Suffice it to say, it's still there, and it's still big.
But not big enough to start treatment yet. We talked about when that might be. I know some doctors will begin treatment when the nodes become "bulky" (the very technical term for "really big"), though even then they can disagree on just what "bulky" means. Dr. R said he would certainly consider bulkiness, as measured by a physical exam, though would also want to look at PET scan results, plus consider any B symptoms I may or may not be feeling, plus consider how I looked, physically. (As Fred Thompson and I know, NHL effects the devastatingly handsome.)He'd want to consider all of those factors before determining when to begin treatment.
So, he's pretty conservative that way, which I'm happy about. I have the luxury of time here. As long as things continue progressing as slowly as they are, I'm in no hurry to begin treatment. Every day waiting is a day toward new and better treatments being developed.
Dr. R's conservatism extends to his treatment plan, too. We talked yesterday about treatment options, so that when treatment becomes necessary, I have a sense of what will and won't work for me, and what the possible effects might be. I think it's better to have all of that information before it becomes necessary, so I can make an informed decision. (I shared this with the online support group; they praised me for taking charge of my own situation. Damn straight.)
Anyway, the current plan would be to probably start with Rituxin, on its own. Rituxin is the antibody that I've written about before. It targets a specific protein called CD-20 that is present on lymphoma cells. We lymphomaniacs affectionately call it "Vitamin R," and it has truly revolutionized lymphoma treatment. Many people have had success using just Rutuxin alone as an initial treatment (and it's almost always a part of the chemo mix). It has the advantage of having few nasty side effects.
If there needed to be a second step, then we would try chemotherapy, and there, we have a few choices. The standard chemo for more aggressive lymphomas (unilke mine) is CHOP, usually given as CHOP-R (CHOP plus Rituxin). It's a moderately heavy-duty chemo, certainly the most aggressive used for blood cancers. One of the drugs can cause heart damage (there are always long-term side effects with any chemo treatment), so it can only be used one time, usually in six doses, spread apart every two weeks. Therefore, CHOP wouldn't be our first choice. On the chance that my lymphoma did transform into something more aggressive, the CHOP would be necessary. So we would try to hold off on that option for when it was really needed. Instead, we'd try a less agressive chemo, either CVP-R or FCR. CVP is basically CHOP without the heart damage -- it removes the "H" drug. FCR takes the "C" from CHOP, adds another drug, plus Rituxin. Dr. R seems to favor FCR. I've read about CHOP and CVP, though I don't know as much about FCR, so I'll need to do a little research there.
We talked about a few other options, including antibodies that target other proteins; certain other CHOP variations; and RadioImmuno Therapies like Bexxar and Zevalin. The RITs, which I have said I am fascinated with, are currently approved for use as a post-CHOP treatment. There's a clinical study underway that is examining it as a first-line treatment, with very good preliminary results.
We didn't even get in to stuff like stem cell transplants and other, more experimental treatments (like those cool patient-specific immunizations) that are being used when everything else fails. No need to at this point. Even if I did need them, it would likely be years from now, and there will be a whole slew of different options available by then.
So for now, we'd probably start with Rituxin, and then get gradually more aggressive. I'm good with that.
I also talked to him about possibly being involved in clinical trials. As I mentioned last post, I'm open to the idea of trying something new. As I'm reminded all the time, the only way we can know whether a new treatment works is by trying it out. So we talked about phase III trials. This means the treatment has already been tried out to see what the side effects would be, so they are known to be safe. The third phase is to show whether or not the treatement works as they had hoped. So I'd be open to trying a new treatment, or a known-effective treatment in a new and different way, assuming it didn't cut off my options later on. Dr. R and I are both going to keep an eye out for anything that fits my criteria.
That's all for now. Follicular NHL is a marathon, unfortunately; I'll likely be dealing with all of this for a long time. But it's all very exciting and hopeful, I think, knowing that so many options exist. Isabel told the doctor I read medical journal articles about chemo treatments for my own entertainment. That's a slight exaggeration, but I'm at the point where I do enjoy reading them, because I find them exciting.
I'll never stop being a nerdy English professor....
Monday, April 21, 2008
Getting the results was a little bit of a surprise. I have an oncologist appointment scheduled for tomorrow, and I was planning on getting results then. But Dr. R left a message this morning, saying the results were in, and that I was probably anxious to hear them. (I was anxious to hear them, but not overly so. I could have waited a day. I wasn't obsessing or anything. At this point, given how I'm feeling, I'm been assuming that things haven't changed much. What's he going to say -- "You STILL have cancer"? Why worry?) He apologized for not getting the results to me sooner, because he had been out of town for the last few days. Maybe he forgot I was meeting with him tomorrow?
Still, it was nice of him to call. He's got a good feel for what patients probably need, emotionally. It's why I like him.
A reminder of what the PET scan is:
I had a combined CT/PET scan last week. The CT scan takes a picture of my body, from pelvis to neck. Abnormalities show up, but not in great deatils, so you can't tell what they are, necessarily. A malignant tumor and benign tumor will pretty much look the same on a CT scan. The PET scan gives more detail. Malignant tumors consume a lot of sucrose, a kind of sugar. So I take a radioactive sucrose solution before the scan, and it will show up on the scan by glowing in places where the tumors are eating the sugar faster than normal cells would. They layer the PET over the CT, and that's how they know if the CT scan abnormalities are malignant tumors -- they glow.
So here's the deal:
The lymph node in my chest continues to SHRINK. It was 2.3 centimeters in November, during the follow up CT for the summer pneumonia. In January, it was 1.5 cm. This time, it was 1.0 cm. Weird, but not uncommon for Follicular NHL, which can wax and wane. Next time, it might be bigger again. There is overall less PET activity in my chest.
There is a slight increase in activity under my left arm. Nothing huge. In fact, it's small enough to not even say for sure it's cancer-related. Could be a normal swelling of a node due to sweat gland irritation, or something. We'll assume it's related to the NHL; don't want to get cocky. But it's slight.
The area near my left hip bone, where the lymphoma first presented itself, is still the hottest spot, as it has been. No surprises there -- I can feel the cluster of swollen nodes near the surface. There are some nodes on the right side that are also hot (as they had been), but they are less obvious to the touch. There are a few that are higher up on my hip that are swollen, but they're not near the surface, so I don't know where they are or how big they've gotten.
Dr. R says we look at the whole picture when evaluating a PET scan, and he pronounces this one as overall STABLE. Those small fluctuations are normal for Follicular NHL.
So all of that is good news.
I'm keeping my appointment with him tomorrow, because I want to talk about treatment options. I won't need treatment right away, but I want to know what to expect, and what his feelings are about certain options. If he favors some over others, I want to do more reading about them.
The big thing with fNHL is looking ahead to the sequencing of treatment options. All NHL is upredicatble as it is, and I, naturally, have the most upredictable type of them all. Some people are successful with the first treatment they try, and go into complete (or at least very long-term) remission. Many people will go into remission for a few years, and then need to try something else. But certain treatments can't be used more than once, or can be, but lose their effectiveness a second or third time. So it's important to consider treatments in a particular order, so you're not wiping out options.
I want to ask him about possible clinical trials, too. I'm obviously not at a point where I need to try something desperate and wild and experimental, but there are trials for current drugs that are experimenting with using them in different ways, at different times, in different doses, etc. I'd be open to helping place another piece of the Lymphoma puzzle, assuming it doesn't cut off options or result in nasty side effects. Something to think about.
I had planned to write today about the kids' first baseball games of the season. That will have to wait a day or two. If I hear anything interesting from Dr. R tomorrow, I'll let you all know.
Friday, April 18, 2008
To my niece Nicole -- have fun at your Junior Prom. I'd give advice to you about handling your gentleman friend, but I'm guessing you don't need any. God help him.
To you American Idol fans: This is spooky. But doesn't Idol cutie Jason Castro look just like John Travolta in Battlefield Earth?
(I got that comparison from another blog. Wish I could take credit.)
To those of you who love cancer humor as much as I do, I got this from CancerIsNotFunny.com, and ironically titled cancer humor site.
Top Ten Worst Ways to Break Your cancer Diagnosis News to Your Family
#10: Wear an "I've Got Cancer" t-shirt around the house.
#9: Using overly intricate (and thoroughly confusing) means:
Spouse: Honey, you don't look so well. Are you feeling alright?
Response: Well, if by 'are' you mean 'do', and if by 'feeling' you mean 'have' and if by 'alright' you mean 'cancer', then the answer is yes, I most certainly do.
#8: Vanity license plates: [2MR GUY], [KEMO GAL], [CNCR SUX],[CNCR FITR]
#7: Via text message. ( omg! ive gt cancer. not kewl. )
#6: Make your family play connect the dots with your twisted logic: "Ya know, I was thinking about what a horrible disease that cancer is and how Fate must really hate someone to inflict such a horrible curse on them. Well, apparently Fate hates me."
#5: The Relativity Approach: "Well honey, I got fired from my job for messing around with the cleaning lady, who apparently gave me HIV. You should get yourself checked out ASAP. Ha ha, just kidding about that...by the way, I have cancer.
#4: "Alright everybody, raise your hand if you DON'T have cancer." (Raising your hand at first, then slowly dropping it as everyone watches)
#3: On the Jumbotron at a sporting event.
#2: Through clever subtleties:
Spouse: Do you have Billy's basketball schedule for next week?
Response: I'll tell ya what I don't have...the ability to properly regulate cell growth and proliferation anymore.
And the #1 worst way to break cancer diagnosis news to your family:
"Knock-knock" ... "who's there?" ... "I have cancer."
Finally, to all of you:
There was a study out a couple of months ago, published in the medical journal The Oncologist, called "Expressive Writing Appears To Change Thoughts And Feelings About Cancer." The title about says it all: some cancer patients were asked to keep journals about their feelings about being cancer patients, and they found that many of them had a change in attitude, but also a change in how they fely physically, after just three weeks. it's called "writing therapy," and writing those of us who teach writing knew about it long before the medical establishment did.
Now, I've never been a journal or diary keeper. I'm too pragmatic -- what's the point if no one sees it but me?
But my blog is my journal. I don't necessarily "express my deepest thoughts and feelings," as the people in the writing therapy study had done. Too many of you would be disturbed by my deepest thoughts and feelings. (Take that any way you want.)
But this blog does give me an opportunity to vent a little, to make light, and to connect with others. So I want to thank you for reading, and for commenting, and for e-mailing, and for telling em that you're reading. It hasn't turned out (yet, anyway) to be what I expected it to be (which was an updating about my treatment), and I hope it won't be for a long time. But I hope you'll keep reading anyway, even if it's become more about Mr. T than about CHOP-R chemotherapy side effects.
Have a good weekend, everyone.
Wednesday, April 16, 2008
I'll get results next week, when I meet with Dr. R on Tuesday. More then.
Thanks for your positive thoughts (and, for some of you, your suggestions for which drugs to take. Didn't really need them, but it's good to keep in mind.)
Tuesday, April 15, 2008
I go for my next PET and CT scans tomorrow morning. I wrote about this in January -- you may remember the experience as involving radioactive milkshakes, abdominal discomfort, and my shoulders falling asleep. I'm sure this seconf round will be just as much fun.
The purpose is to re-stage -- see how far (if) the lymphoma has progressed, to get a sense of just how fast (or slowly) it's growing. I won't get results until next week, when I meet with Dr. R. There are a few possibilities, though:
The scans could show it's regressing a little bit -- fNHL is known to wax and wane, get better and then get worse (and then better and then worse again).
It could show slow progression. The first PET/CT showed a very hot spot near my hip bone, where I had the node removed in January, and then some very faint spots in about five other node clusters. There could be more activity in any of those places. (Or less. Gosh I love this disease. It's like the Paula Abdul of cancers -- could be straightforward, or it could be slurring and stumbling like pain killer addict.)
It could also show aggressive progression, in nodes that are too deep to feel with a physical exam.
My guess? #2 -- slow progression. I can't help but feel those hip nodes every day or two, and some days they feel bigger, and some days they feel smaller, though it could be the scar tissue left over from the biopsy, or even fluid build-up in the space vacated by the removed node. I don't think I'm progressing too much, if at all; no other nodes popping up, and no B symptoms.
My guess is, even if there is some progression, Dr. R will recommend continuing to watch and wait. He seems conservative that way, which is just fine with me. One of the things I'll discuss with Dr. R next week, regardless of the outcome of the scans, is treatment options, for when they become necessary. As frustrating and stressful as watch and wait can be, it's nice to have the luxury of time -- time to read and learn and make informed decisions. I know lots of people with NHL and other cancers aren't so fortunate.
I'll think of all of you as I hoist my radioactive pina colada milkshake in the morning.
Sunday, April 13, 2008
We spent a morning at a very cool place called Butterfly World, which had tons of butterflies and bird aviaries (cages with birds flying around your heads). They also had a cage of lorikeets; we fed them nectar from small cups as they perched on our heads and shoulders.
Friday, April 4, 2008
I don't have any good hockey fight links, but you'll probably enjoy this one just as much. It's a clip of the tennis player Mikhail Youzhny from an ATP tournament last week. He missed a point, and was so frustrated with himself that he whacked his own head with the racket, drawing blood. The match had to be stopped so he could be treated. I especially love his opponent checking on him and trying to hold in his laughter.
I think tennis players are probably smarter than hockey players in general, but you rarely find a hockey player beating himself with his stick. (Then again, that might be why they wear helmets.)
I probably won't be posting anything for a week or so. We're off to Florida, a gift from Isabel's brother Dave and his wife Sally. They won a week at a timeshare in Pompano Beach at an auction at their kids' school, and gave it to us, sensing that we perhaps could use some time away. We haven't really planned out the week yet, but there's a pool and a beach at the complex, and lots to do in nearby Fort Lauderdale, including visiting with Dave and family. We do know that we'll be seeing the Florida Marlins play the Pirates on Sunday. We need to try to get to the nearby Everglades, too; it's on John's list of places to see in his lifetime. He assumes we'll be able to see a 20 foot gator in its natural habitat.
Once again, we are overwhelmed by everyone's generosity. Dave and Sally -- thank you so much.
Maybe we'll send an update, if we get near a computer. Otherwise, sometime next weekend.
Wednesday, April 2, 2008
Sounds a little depressing -- statistics about survival rates sometimes are -- but I find it really hopeful, especially after my last post about all of the fascinating therapies that are being worked on now.
Enough of that. Have a good time watching this video of Hall and Oates' She's Gone. This must have been even before MTV, given how horrible it is. Not relevent, but fun. (Neither Hall nor Oates has lymphoma.)