Thursday, April 29, 2010

Carrots, Eggs, and Coffee

My buddy Sara from the support group posted this a few days ago. She had just come back from a doctor's appointment, and found this in her e-mail, and though she should share. I think it's worth sharing.

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A young woman went to her mother and told her about her life and how things were so hard for her. She did not know how she was going to make it and wanted to give up. She was tired of fighting and struggling. It seemed as one problem was solved, a new one arose.

Her mother took her to the kitchen. She filled three pots with water and placed each on a high fire. Soon the pots came to boil. In the first she placed carrots, in the second she placed eggs, and in the last she placed ground coffee beans. She let them sit and boil without saying a word.

In about twenty minutes she turned off the burners. She fished the carrots out and placed them in a bowl. She pulled the eggs out and placed them in a bowl. Then she ladled the coffee out and placed it in a bowl. Turning to her daughter, she said, "Tell me what you see."

"Carrots, eggs, and coffee," the daughter replied.

Her mother brought her closer and asked her to feel the carrots. She did and noted that they were soft. The mother then asked the daughter to take an egg and break it. After pulling off the shell, she observed the hard boiled egg.

Finally, the mother asked the daughter to sip the coffee. The daughter smiled at its rich taste. The daughter then asked, "So what does it all mean?"

Her mother explained that each of these objects had faced the same adversity: boiling water. But each reacted differently. The carrot went in strong, hard, and unrelenting. However, after being subjected to the boiling water, it softened and became weak. The egg had been fragile. Its thin outer shell had protected its liquid interior, but after sitting through the boiling water, its inside became hardened. The ground coffee beans were unique, however. After they were in the boiling water, they had changed the water.

"Which one are you?" she asked her daughter. "When adversity knocks on your door, how do you respond? Are you a carrot, an egg or a coffeebean?"

Think of this: Which am I? Am I the carrot that seems strong, but with pain and adversity do I wilt and become soft and lose my strength?

Am I the egg that starts with a malleable heart, but changes with the heat? Did I have a fluid spirit, but after a death, a breakup, a financial hardship or some other trial, have I become hardened and stiff? Does my shell look the same, but on the inside am I bitter and tough with a stiff spirit and hardened heart?

Or am I like the coffee bean? The bean actually changes the hot water, the very circumstance that brings the pain. When the water gets hot, it releases the fragrance and flavor. If you are like the bean, when things are at their worst, you get better and change the situation around you. When the hour is the darkest and trials are their greatest, do you elevate yourself to another level?

How do you handle adversity? Are you a carrot, an egg or a coffee bean?

The happiest of people don't necessarily have the best of everything; they just make the most of everything that comes along their way.

May you have enough happiness to make you sweet, enough trials to make you strong, enough sorrow to keep you human and enough hope tomake you happy.
May we all be coffee.

Tuesday, April 27, 2010

Happy Birthday, Peter

My little boy is not so little. He turns 13 today.


Kind of strange having a teenager in the house, though he's been practicing his eye-rolling and grunt-responding for a while now, so we've been able to build up to it.


In his honor, I present a short video called "Peter, Scottish Warrior King."


I made this video with Peter in June 1997, when he was about 7 weeks old. Isabel had absolutely no knowledge of what I was doing. I took Peter into the bedroom and closed the door. Every few minutes, she heard me laughing or Peter crying a little, but she mostly left me alone.


It was a very warm, sticky June day in Kentucky, and being in the closed-off bedroom didn't make it any more pleasant. Which isn't to say I didn't have a good time.


(Sure, this post is really about celebrating Peter, but if I may, I'd like to point out that this video reveals some of the early promise that came to full flower in my more recent films, The Money Mobile and Cake Chief, don't you think?)


Anyway, a very happy birthday to our Peter. He and Isabel spent yesterday in New York City. where Peter's All-State Band was supposed to give an outdoor concert on the plaza at Lincoln Center, but got rained out. Today he's got a baseball game for one team and a practice for another right after that. He's doing great things, and we're very proud of him. He's going to make a great teenager.


Enjoy the video.




video

Saturday, April 24, 2010

Best Cancer Hospitals

US News and World report has published their annual hospital rankings, and the results are good news for me.


In their rankings for Cancer Hospitals, Yale-New Haven comes in at #21 in the country. Not too shabby. Even better is that Sloan-Kettering in New York is #2, Hopkins in Baltimore is #3, Dana Farber in Boston is #5, Mass General is #7, and Brigham and Women's in Boston is #15. Throw in a couple of hospitals in Philly, and a couple more in NYC, and I'm about a 5 hour drive from a dozen of the best cancer hospitals in the country. Which is very cool.


US News does rankings for lots of specialties, and it's always interesting to see what they think. Of course, my main concern at the moment isn't the proctology rankings, but it's nice to know they exist.

Thursday, April 22, 2010

Happy Earth Day

It's the fortieth anniversary of the first Earth Day today.


It's also the twentieth anniversary of the first Earth Day that Isabel and I shared.


Seems insignificant, but it has some lasting memories for us.


Boston celebrated Earth Day that year (1990) with a march from Kenmore Square to the Esplanade, along Storrow Drive. Isabel and I had been dating for about a month at that point, though we'd known each other since the previous August. We hadn't told anyone at work that we were dating, because each of us had recently turned down another co-worker's affections with the excuse that we didn't date co-workers. So we had to keep it a secret.


Earth Day that year was a beautiful spring Saturday, and we marched with a couple of hundred others, behind a young man in a tie die shirt and leather vest with a bullhorn, chanting "Ho ho! Hey hey! Every day is Earth Day!" Except once he got distracted and said "Hey hey! Ho ho! Earth day is every....Um...Ho ho...." Even now, whenever we hear anyone saying that "hey hey ho ho" chant, we laugh and repeat the bullhorn guy's mess up. Ah, memories.


When we reached the Esplanade that day, Isabel and I sat under a tree and listened to whoever the speaker was, telling us about the environment. Someone took our picture as we sat under that tree, holding hands. Which we were used to, frankly, because people used to take our picture all the time. We were a damn cute couple. We overheard the photographer telling someone else that he worked for the Boston Herald.


And then we remembered that this meant there was a chance that everyone at work would see a picture of us holding hands. Such a picture would definitely end up on a bulletin board outside our office, because we figured this was definitely going in the newspaper -- we were that cute a couple.


Fortunately, the Herald went with a picture of the guy with the bullhorn. We were safe.


Until we got caught making out at a party a month later.


Anyway, to celebrate Earth Day, here is a link to a video version of Dr. Seuss's classic, The Lorax. The book was published in 1971, and the video linked here appeared on TV the following year. It's a great video, co-produced by Friz Freleng, the former Warner Brothers cartoon director, and featuring the vocal talents of Eddie Albert, who had just finished his run on Green Acres and was a couple of years away from his brilliant portryal of the evil prison warden in The Longest Yard.


Enjoy the day. It's a beautiful one here.

Monday, April 19, 2010

Good Visit

Had my 6 week follow-up wth Dr. R today. Things look good.

Bloodwork, as always, was "rock solid." No signs of anemia, no low (or high) white blood cell count.

No new nodes popping up anywhere.

The swelling in the leg looks good to him. He's never measured it or anything, but he thinks it looks like it's a little smaller, a little softer, and a little less red than the last time he saw it. So it seems like maybe the Rituxan kept working even a little bit more, after the CT scan in February.

He was pleased enough to say I could come back in 3 months, rather than 6 weeks, which puts me back on my old schedule.

Before I left, we talked about next steps. I always like to know what's coming next. I asked him about Rituxan maintenance. We had talked about another 4 rounds of Rituxan six months after the first treatment. He said he has mixed feelings about it. Rituxan maintenance has shown some benefit for more aggressive lymphomas when the first treatment was chemotherapy; it tends to extend the benefits of chemo. The benefit for indolent lymphomas, particularly when the first treatment was not chemo, is less clear. It wouldn't be harmful to do more Rituxan -- it just might not do any good. He said he was going to think about it, and then made the appointment for two and half months rather than three, so if we did do more Rituxan, we could fit it in before the fall semester starts.

If it was up to me -- and, really, let's be honest: it is up to me -- I would (will) go with four more rounds of Rituxan this summer. I might have skipped it if I had gotten a complete response the first time, but if I still have some swollen nodes, why not give it a shot? It won't cause any real long-term side effects, and it's very tolerable. Dr R seemed more concerned about inconveniencing me than anything else. I say it's a pretty darn good use of my time, ya know?

So that's where we are: a good visit, with more evidence of success with the Rituxan, and a conversation at the end of June about whether or not to keep watching and waiting, or to try another bit of treatment.

A good visit indeed.

Saturday, April 17, 2010

Cool Research

I don't have a link for a full article, but this description of the research is called, straightforwardly, "Compound that Kills Lymphoma Cells Discovered," seems very promising.

Researchers have discovered a compound that disrupts the connection that causes certain lymphoma cells to grow. They don't name the type of lymphoma, but I'm guessing it's Diffuse Large B Cell (DLBCL), an aggressive type. I could probably research the protein that they mention to find out for sure, but it's good news even if it isn't about Follicular NHL specifically. All of this research opens up new avenues, given the kind of targeted therapy that this involves.

It's a short article, but there's good stuff in there. I like that they describe the process, looking at so many compounds and then narrowing it down to just a few that showed promise.

Of course, this is all pre-clinical-trial research that hasn't left the lab yet, so it will be years before we even know if it's effective. Seems safe, according to the researchers -- they claim it's non-toxic, which is great.

Certainly something to keep an eye on.

*******************

I see Dr. R on Monday for a six-week, post-treatment check up. I feel pretty good, so I'm not anticipating any bad news (though, of course, you never know). The nodes that had been active, that were close enough to the surface for me to feel, haven't gotten any bigger since the Rituxan shrank them. And I haven't felt any new ones pop up anywhere. The tricky part will be the deeper ones that I can't feel, though I haven't felt any pressure anywhere in my abdomen to indicate that they are causing trouble again.

I will update you all late Monday or early Tuesday.

Wednesday, April 14, 2010

Busy, busy

My goodness, it's been a busy week. Almost too busy to post on the blog. Almost. But -- then I jinxed myself last week when I said my computer was fixed, and it turned out it wasn't, and now I've had a busy week AND no laptop and thus not much time to post to the blog.

As I said last time, Catherine and I went to the Father-Daughter dance at her school on Friday night. This is the fourth one we've been to, and she looks forward to it every year. Mostly for the snacks that they lay out, the corsage I get her, and the opportunity to buy me anew tie to match her dress, but also so she can spend time with me. I assume.

We laso go out to dinner together before the dance, and my favorite memory from all of these dances was from the first one, when she was four. She chose Applebees as our dinner location. When we arrived, there were four waitresses at the hostess' station, and all of them when on about how beautiful she looked; an older couple nearby said the same thing; and then the hostess made over her too before taking us to our table. When our waitress came to the table, she asked us what we'd like to drink, and then left to get them in a rush. Catherine leaned over to me and whispered, "Dad -- she didn't tell me how beautiful I look." It's tough to be a princess.

Catherine and I actually dance quite well together. Lots of spinning, the occasional dipping, and a dynamite two-person robot dance. Very Shields and Yarnell, if your memory goes back that far.

Anyway, we had a great time.

We got home and went straight to bed, because we had to leave at 5:30am Saturday to bring Peter down to Washington, DC to a Youth Leadership Conference that he was invited to. This is his first extended time away from home, and he has been looking forward to it for a while.

The conference takes advantage of its DC location, bringing the kids (who are all 12 or 13 years old, from all over the country) to various spots in and around the city to talk about leadership qualities like courage, determination, and problem-solving while thinking and learning about real-life examples. Peter's interested in history and politics, so this was a good thing for him to experience.

Frankly, I didn't expect to hear from him at all for a week, but he's been good about texting us a couple of times a day. So we get things like "Harpers Ferry is awesome! John Brown looks like he was insane!" and "Here's a pic of the Canadian Enbassy! Woot!"

So he's having a good time, as far as we can tell. (We know that "woot!" means that something is good.) I think if he was going to feel uncomfortable about being away, it's probably not an issue because he has family so close. He's got the "special phone number" just in case there's an emergency -- he knows the Secret Service will pop up from out of nowhere to take care of any problems.

He'll be back on Saturday.

And I'll get back to cancer-related posts very soon. Some exciting research going on.

Monday, April 12, 2010

Still Around

Just in case you were worried about my not posting for a while:

I'm still around, and still fine. I'm also still recovering from my date Friday night: Father-Daughter Dance with Catherine.

More soon.

Thursday, April 8, 2010

Warm and Fuzzy

I'm feeling better today, emotionally, after the good folks in our technology department cleaned a wicked virus from my computer for me.

It's a variation of a virus that I got last year; it pops up randomly and pretends to be an anti-virus software alert. It says you need to run anti-virus software, and when you click on it to run the (fake) scan, it gets into your system and then keeps popping up and disabling your browser until you agree to buy its (fake) anti-virus software. I didn't click on it this time, so I think that helped get rid of it easily.

Of course, it also burrows down into the operating system, so, as the IT kid said to me, "It seems like we got rid of it, but a lot of times, it comes back again."

I asked him if it was called The Follicular Lymphoma Virus. I didn't really expect him to get that joke.

**********************

A couple of weeks ago, the Cleveland Caveliers set a world record when they gave free Snuggies to the fans at one of their games and had all of them wear them at the same time. Some fans refused to wear the Snuggie, of course. Bunch of losers. Put on the damn Snuggie for minutes, for cryin' out loud.

When Isabel and I lived in Kentucky, the local minor league baseball team tried to set a world record for the largest line dance. For $5, which went to charity, you got a t-shirt and a shot at fame. When the game was over, we went on to the field for the line dance -- a little Achy Breaky Heart. We fell short of the record, despite people pleading with those who remained in the stands, telling them they didn't have to pay, only had to come down on the field and do a stupid dance. Why would someone stay and watch a couple of thousand people be disappointed? Why not just leave?

I'm still bitter about my chance to be a part of something so special.

The Cavs fans, however, did set the record.

Until Tuesday night, when fans of the LA Angels broke the Snuggies record.

Maybe they have a world record, but none of them look as good as me in that Snuggie....

Tuesday, April 6, 2010

Daffodils

The daffodils in our back yard finally popped open this weekend. I bought them a few years ago because they were cheap and would do well in the partial shade in that part of the yard.

Little did I know then that daffodils are the official flower of cancer survivors. They bloom in the spring, and spring brings hope.

Someone in the support group posted the affirmation that appears below. It's nice. Gives you something to think about when you see daffodils in bloom over the next couple of weeks, even if (like me) you're not much of a fan of William Wordsworth.

The affirmation is one of the weekly e-mails sent out by the good folks at The Cancer Crusade, one of those sites worth visiting (especially the "Healing with Humor" section, and their Survivor Movie).

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I wandered lonely as a cloud
That floats on high o'er vales and hills,
When all at once I saw a crowd,
A host, of golden daffodils;
Beside the lake, beneath the trees,
Fluttering and dancing in the breeze...
For oft, when on my couch I lie
In vacant or in pensive mood
They flash upon that inward eye
Which is the bliss of solitude;
And then my heart with pleasure fills,
And dances with the daffodils.
~William Wordsworth~

I love daffodils, and I'm not even what you would call a "flower person." They're always the first thing to bloom in my yard, the surest sign that spring is really here and that the long, dark days of winter are over. No matter how much snow has covered them, no matter how many bitterly cold nights have settled upon them, no matter how many ice storms have beaten and battered the ground above them, the daffodils open in the bed outside my front door. They shove their bright little faces up out of the earth and turn toward the sun as if to say, "Ha! Here I am! You didn't think I could do it this time, but in spite of it all, I'm still here!"

No wonder the daffodil is the traditional flower symbol for cancer survivors. We endure the shock of diagnosis, the dread of surgeries and other treatments, the painful and often disabling side effects, and the fearful uncertainty that follows us the rest of our lives, because now we truly understand. We really and finally get it: that life is about hills and valleys, triumph and defeat, storms and sunshine, and yet we keep on keepin' on.

We are the daffodils.

Dear God, be with me as I weather the storms of this disease. Lift me up above the surgical table and the treatment bed or chair, beyond the confines of the hospital and the clinic and my sick bed at home. Raise me higher than the storms and all the places they rage, both within and without. And even as they rage, Lord, remind me to give thanks for storms because it takes both sunshine and showers to make little yellow flowers grow. Amen

Sunday, April 4, 2010

Happy Easter

Hope your Easter was a happy one (for those who celebrate it -- if not, hope it was as beautiful a day where you are as it was here fore us). We had a good day ourselves.

After church, an Easter Egg Hunt in the backyard (which Peter was forced to participate in, much to his horror, but when you're a couple of weeks away from turning 13, you gotta work for your candy if you expect any) and our Easter brunch (which inlcuded scrapple, much to John's delight) we had our own version of an Easter Parade -- our traditional walk/hike.

I'm not sure any Easter walk will top the one from a few years ago at Lake Wintergreen, where we observed hundreds of frogs mating, but today's was pretty good. We went to Sleeping Giant State Park, and walked the Violet Trail along the Mill River. The day was gorgeous, and Peter enjoyed skipping rocks while John and Catherine hunted for frogs (which all seemed to be confirmed bachelors, thank goodness). Strudel had a great time -- she came home and collapsed on the couch for two hours.

We enjoyed a wonderful dinner of ham, scalloped potatoes, and asparagus. Peter agreed to set the table, and gave us a little payback when he opened the china cabinet to get the good dishes, and said, "It smells like the 90's in here." Not sure what that means, but I'm pretty sure it was an insult. I'm also pretty sure we don't use our good dishes often enough.

I was going to include a link for an Easter video -- something from Charlie Brown, or one of the many creative marshmallow peeps videos out there, or the new one from the Muppets, but I'm too tired. You can look up the videos yourself. Strudel and I are going to bed early.





Friday, April 2, 2010

April 2

I was going to post something yesterday, but I didn't want to either (1) have what I said be misconstrued as an April Fool's joke, or (2) have to come up with a really good April Fool's joke on my own, which I just don't have the energy or the time for these days.

So you'll just have to get a straight and serious news report from me instead.

I have been extoling the virtues of RadioImmunoTherapy for almost two years now, and more great news keeps coming in.

The latest is that Bexxar (one type of RIT, along with Zevalin) is safe when used a second time. There had been some speculation that Bexxar might have long-term negative effects on bone marrow that would be even greater if used more than once. However, this does not seem to be the case. (I can't get a link to the article to work, so you'll have to take my word for it.)

This is important because many doctors are reluctant to try RIT on their patients, and those who are willing will sometimes hold off on using it until other treatments have failed, because they think it can't be used more than once.

This is unfortunate, because research shows that RIT is more effective for lots of patients when it is used early on in the course of treatment.

There's a very nice review of RIT and its effectiveness on Follicular NHL from the January issue of Community Oncology, called "Radioimmunotherapy: A promising treatment strategy for follicular lymphoma." It includes a nice summary of recent research on how well RIT works, including studies that show it works well early on, and in combination with more traditional chemotherapies.

No joke.