Thursday, April 25, 2013

It's time I spilled this

I've been keeping my health situation pretty much to myself for the past couple of years. I've shared it only with people "in the club" as it were. But as I've reached a milestone in my condition lately, I thought it was time to share it. Feel free to share with friends, but I'd rather it wasn't broadcast in public on twitter or facebook. Thanks.

Chemo. You know what it means. The big C. Yep, I'm now "in the club". Actually I have been since I was diagnosed in 2010 with a (fortunately for me) minor league form of cancer known as CLL or chronic lymphocytic leukemia. Here's the Mayo Clinic information page on it:

For those who don't want to read any further, here's the bottom line. CLL is not normally aggressive or lethal. It can be treated successfully for decades. Many patients live into their 80s or even 90s. Mine has advanced slowly over 3 years to the point where my oncologist wants to treat it. I started my 1st low-dose chemo regimen today. So far, no adverse effects, which is great. Stay tuned for updates.

The chronic form of the disease is much less aggressive than the acute forms. Yes, it is leukemia, but it's a highly treatable form of the disease. My oncologist characterizes it as indolent, meaning "causing little or no pain." When my primary care doctor first called me to tell me what my blood tests had revealed, he said, "If you have to get cancer, this is the one to get." Small recompense, I'll grant you, but welcome anyway.

CLL affects mostly older people. I was diagnosed at age 63. The later in life you're diagnosed, generally, the better off you are. My dear friend, Lisa Adams, a cancer, grief and loss blogger, currently dealing with stage 4 metastatic breast cancer, says the definition of "beating cancer" is "dying of something else." My oncologist has said as much. "You might die with it, but you won't die from it." That's good news… I guess. 

As with other slow moving forms of the disease, like prostate cancer, the treatment protocol can initially be simply watchful waiting. This is because attempting to treat the disease can do more harm than simply letting it alone. I have been in this phase for nearly three years. The primary indicator of the disease is one's white blood cell count or WBC. The normal count in a healthy adult is between 4500 and 10,000 cells per microliter. If you have any kind of infection, however, this can easily balloon to 2 or 3 times that reading. In patients with CLL, the baseline tends to rise slowly over time. Right now, my white count is about 35,000. 

I've been seeing my oncologist about once every 3 or 4 months. My WBC has been slowly upticking over that time. Here it's important to note that WBC test accuracy is not very good. Blood tests taken within a couple of days can vary quite a bit. My last pre-appointment blood test put me at roughly 55,000. However, when my oncologist re-tested me at my consultation on Tuesday with his own in-office lab he got 35,000, a difference of 40%!!

At any rate, I'd been having some abdominal discomfort since my last checkup. So that, coupled with my oncologist's lymph gland exam last week, prompted him to send me for a CAT scan this past Monday. It revealed some swollen lymph glands in my abdomen neck and arms, but thankfully, no diverticulitis, which is what I thought had been giving me the lower left quadrant abdominal pain.

At that point, he decided to put me on a low dose of chemo for 5 days to try to shrink the lymph glands and knock my WBC down to something perhaps approaching normal. This is a typical treatment plan for CLL. When the disease advances, it's possible to apply some defensive pressure (as they'd say in the NFL) to push it back to a more tolerable level. Over many years, this approach has diminishing results but it does do the job for quite a while.

So today, I started my first day in a 5 day round of Cytoxan (the chemo drug) at a low dose, combined with Prednisone, a widely used and powerful corticosteroid. Of course, when you hear "chemotherapy", you worry about all kinds of bad side effects, but this is a very low dose by cancer therapy standards. I'm about 12 hours into the first dose and not feeling really any adverse affects. And on the plus side, the prednisone is chemically related to the steroids some pro athletes take to juice up their batting averages. So I can report that at the driving range today, i was hitting my 8-iron nearly 150 yards, which is easily 25 yards farther that I normally do. Ok, it was downwind, but still… My primary care doctor, on hearing my oncologist's prescription said, "Oh prednisone? You're going to remember what it was like to be 20 again."

So that's the scoop, friends. To date I have revealed this information only to other "club members", not because I have anything to hide, but because it can put another person in an awkward and difficult position and I really hate to make people feel uncomfortable or obligated to "say something." So don't feel as if you have to. Instead, please take a couple minutes to read Lisa Adams' posts on what to say and what not to say to a cancer patient.

Saturday, January 16, 2010

Roger Smith Hotel suite

I won a free night at the Roger Smith Hotel on Lexington Ave. in New York City. Regardless of it being free, I felt that I had to give these people some videoblog love because it's such a nice place to stay. Even at the standard walk-in rate, these rooms are real bargains.

The Roger Smith's rooms are spacious by any measure and ginormous by NYC standards, where most rooms are so small you have to go out in the corridor to change your mind. :)

And for you social media people, there's always a Twitter discount. Just follow @Bsimi or @adwal or @RSHotel. They're disrupting the hotel business.

Thursday, July 30, 2009

Financial reports big as a phonebook

Today I in the mail, I received a dose of the financial reports that I've come to expect from various funds and stocks that I'm invested in. The one from Barclay's Captial just offended me. It's as thick as a local phonebook and has densely printed prose, tables and graphs on every page. My question is, who on earth is going to read any of that? This is a horrible waste of natural resources and simply denudes forests to fill up landfills. All this information is undoubtedly online but the default seems to be paper mail. I'm guessing there's some law about disclosure that requires financial firms to publish these tomes. It wouldn't suprise me if it was sponsored by the paper lobby!

Friday, February 22, 2008

Here's your snow, @Danacea :)

My Twitter-friend @Danacea (Danie Ware) is always wishing for "proper snow" where she lives in England, but never seems to get her wish. So, since we're having one of our relatively infrequent snows here on the shore in Connecticut today, I thought I'd make a little video for her amusement. Enjoy watching me slave away moving that white stuff Danie!

Thursday, January 24, 2008

The Boulevard Diner, Worcester, MA

Today, I was privileged to join Diner Aficionados Scott Monty and CC Chapman on a very fun road trip to Worcester, Massachusetts to visit The Boulevard Diner on Shrewsbury St.

The Boulevard is an authentic old railroad diner car built right in Worcester (Worcester Lunch Car Co. #730 built in 1936). I and my fraternity brothers used to visit the Boulevard, a 24 hr, 6 days/wk, establishment in the wee hours after parties when I was an engineering undergrad at WPI in the late 60s. That's right folks, I used to go there 40 years ago, and it is almost exactly like it was those decades ago.

In those days, my favorite order was an Italian sausage sandwich and a chocolate milk. I ordered the same today and, except for the price, it has also changed very little. Still hearty and delicious. Scott had the steak and cheese, and CC went for his diner touchstone meal, the meatloaf.
Scott and CC's diner blog is Nothing Could Be Finer Than Being in Your Diner and I also posted a photo set on Flickr

Sunday, December 30, 2007

A couple of suggestions for improving Seesmic

First off, congratulations on seesmic's popularity. It's certainly attracting a lot of attention and a lot of users, myself included.

But as a developer and former CTO myself, I think seesmic could become even more successful if its implementation was simplified and its basic utility filled out a little better. Here are two suggestions I think might make a big difference.

Ditch all the Flash except for video rendering

Yeah, the rotating lists and animation are fancy, but all that "flashturbation" devours processor cycles and memory. While on seesmic, my browser will frequently pin the processor at 100% for minutes at a time, and gobble up nearly 120 megabytes of page-file usage.

Except for the video rendering and its play/pause controls, you would make a LOT of friends by going to an XHTML/CSS/javascript implementation. Memory usage would be reduced and performance would certainly improve, perhaps dramatically. Forget all the cute list animation. Those lists frequently screw up and overwrite, or stall and lock up the browser.

Include some way to find users so I can follow them

It's nearly impossible to locate a user's account page unless you can find a post they've made in the public timeline.

Finding a user could be done several ways. Here are two:
  • A search window.
  • Something like Twitter's convention of recognizing a simple URL that contains the users handle. (i.e.,

Thanks for listening!

Saturday, December 15, 2007

What are your most visited Social Networking Sites?

I'm doing a little research and would like to know what your top social networking or social media sites are. I especially want to know about sites that have some concept of "friend" or "follower" or "contact". That is, sites that let you create relationships with other people on the site. I'll give you my faves for starters:

* Twitter
* Flickr
* Seesmic
* Facebook
* YouTube

You can reply in the comments to this post, on Twitter by @ or DM to "joec0914", or by email to joec0914 [at] All respondents will get an invitation to test a new site in a few weeks.

Thank you!!