Sunday, August 10, 2008

First Post-Treatment Scan Incoming!

Let the scanxiety begin, its time!

I get my first post-treatment PET scans next Monday. For those who didn't follow the original blog, PET scans involve getting injected with a radioactive sugar. Cancer cells apparently chow down on sugar faster than most other cells in the body, so you get the injection, hang out for an hour, then get a scan. Cancer pops out on the scans as black masses. Here's a copy of a PET slide from my diagnosis back in October to show you what I mean.

Here's the situation: The odds are spectacularly in my favor that it will be nice, clean, and boring. We're talking 95% or so chance its clean. However, if you're going to relapse from Hodgkin's, its going to usually be in the first two years (after that, its Double Secret Probation rare).

Second, if you're going to relapse, you really don't want to do it in the first six months. To put it bluntly... The odds ain't good, even with secondary and tertiary treatments. So yeah, Suzanne and I are a little scared going into the scan, great odds or not.

Now, its not a guaranteed death sentence if this doesn't go well. We can still be cured with a stem cell transplant (using my own stem cells - rest easy Brian, Tracy, and Billy haha, you're off the hook still haha). However, THAT cure rate is a coin toss - about 50%, and being diagnosed in the first 3 months makes it worse. That's not to scare anyone, that's just the stone cold statistics of the thing. And an explanation on why Ativan is my friend at night again.

Again, the expectation of everyone (including my oncologist) is this will be perfectly fine. However, that doesn't take the fear away for one minute. Sometimes I wonder if that nagging fear will ever go away completely.

Speech! Speech!

Last Tuesday, I gave my speech at the Leukemia & Lymphoma Society's Light the Night kickoff. For those who don't know, Light the Night is a big fundraiser for the LLS, as well as a walk to honor those with blood cancers, as well as those who lost their fight. The kickoff was for team captains and corporate fundraisers. I was scheduled in to be the featured speaker.

It was held at T. Burkes in King of Prussia to honor the owner, who recently passed on from leukemia. I thought that was an incredible offering by the bar / restaurant, as the food was incredible as was the room they gave us.

Prior to my speech, they showed a video showcasing last year's Light the Night. Suzanne was in tears, and I started getting a little choked up. NOT how I wanted to go onstage. I held it together, and gave a decent 10 minute speech (at least I was told it was good!) on my story, and why supporting the LLS is as important as it is. That was the easy part.

I enjoyed it, and if it helped motivate one person in that room to raise more funds, then it was worth every minute.

Speaking of, I will have a link over to the side with my team pretty soon, and you can donate online! Please think of donating for my team, as my family will be walking this October.


So, two weeks ago we went on vacation, up to Ricketts Glen State Park (PA). Let me tell you, it was absolutely amazing up there.

We left on Sunday, so as a bonus all of the traffic was heading home, as we headed up into the mountains. It only took us about two and a half hours to get there and while they are relatively low mountains (hey, we don't have the Rockies in Pennsylvania), there was about a 10-15 degree temperature difference. Well, guess who doesn't remember to bring pants? Yeah. Shorts, I have. Pants? Hey, its summer, who needs pants, right?

By Wednesday, I drove 40 miles to around Bloomsburg to buy a pair of sweats. Mosquitos and 50 degree temps will do that to you.

The main attraction of Ricketts Glen is the Waterfall Trail, about 4 miles of almost-climbing into and out of a gorge, with 22 waterfalls along the way. It was absolutely gorgeous, and just the exercise I needed. I also had the smaller rugrat on my back the whole time, so I did the trail with 50 lbs. on my back. Suzanne gets an honorable mention for also attaching full water bottles to the pack, adding a few more on. Hell, just put a saddle on my back and give me a feedbag why don't ya?

I thought we were going to run out of stuff to do, but WOW - No way. We hiked, went boating on the lake, picked blueberries (this place had wild blueberry bushes EVERYWHERE)... Didn't need anything else. We all had a blast.

Speaking of the blueberries, I figure we each ate about two pints of blueberries ourselves while there, then brought home a pint or two as well. Having picked them, I'm glad there are others that have to do so commerically. It reminds me of eating steamed crabs, or unpeeled shrimp - Lots of work for a little reward.

While it was chilly at night, we couldn't have asked for better weather. It didn't rain until the morning we left. Couldn't ask for more.

Oh, and before anyone thinks I'm a camera hog -- Unfortunately, we didn't have electric at the campground like we were told we would, so the battery died a couple days in. Sue was taking pictures while I carried Steven, so... Yeah, she got out of the photos. Not my fault.

Been Gone Awhile

Hey, sorry I've been gone awhile! I'm back though! I have a few things to catch everyone up on - Our vacation, a few scares (but nothing to worry about - I'm fine).

I'm going to nix the IT stuff. Frankly, I'm back to work - Meaning if I get 10 minutes to write something, I'm really not in the mood to write about... Work. If I got paid to blog some, then that's something else, but I don't.

So, I'll keep the posts coming a little more frequently!

Monday, July 14, 2008

Confirmed, I'll be Speaking in August

Just confirmed today via email that I'll be speaking at the Light the Night kickoff for the Philadelphia area in August. Looking forward to this more than I think any of you can know.

Short post, because its late!

Sunday, July 13, 2008


Thank God, only 26 days until the first preseason game. The good time of the year is almost upon us!

So, What's Been Happening, Slacker?

Sorry for the delays in posting, work has been kicking my butt, just not used to working a full week yet! Anyway, I have a LOT to cover, so let me get started!

First, Hodge-A-Palooza. Wow. What a great time that was. Ingredients: Add about 20 Hodgkin's survivors, a bunch of caregivers, a dash of Italian food, sprinkle liberally with alcohol then bake in Boston, MA. Amazing fun, even if I was in Philly sport's enemy territory.

We started out around 3AM, leaving Philadelphia for the drive (so the kids could sleep), and arrived in New Hampshire at the darling wife's sister's house around 10AM. I said hello for about an hour, then proceeded to pass out. After a few hours sleep, we hung out some more, then I got ready to head into Boston myself (Sue wasn't coming, since we were also there to visit her sister, and it wouldnt have been right to ditch her completely with the kids - And she's right).

First off, can a major city call itself a major city when the friggin parking rates are higher than the food bill?!? I mean, I paid $36 to park in a mall parking lot. I think I saw people shooting at each other for the street parking. Still, the part of town we were in (Back Bay, on Boylston Street) was an awesome hangout.

Dinner was at Vinny T's, which for a chain was some really good italian food. The service left a bit to be desired, bringing out 10 portions of an appetizer for a table of 15 (for example). They did rectify problems when asked, but cmon now! Dinner took hours, as most of us were talking more than eating.

Which brings me to something: I'm one of those "If I know you online, I most likely don't want to meet you in person" types, since I find meeting friends online kinda weird - Please leave out the obvious "Well YOU are chatting online too", I acknowledge I'm a hypocrite. However... This group were genuinely people I would hang out with. They were FUN, and alot like my friends at home. If anything, I was the "I most likely don't want to meet you in person" person, since I was still exhausted from the drive up that morning. Not that we weren't a bit odd though - Nothing like seeing a large group of people pulling shirts down a little to show off surgery scars!

We moved shop to the bar next door, which was a fun bar, but served Guinness in a plastic cup. In a plastic cup. In Boston. I thought a quarter of Ireland's original population now lived in Boston. How could this be allowed? So, while Boston may have titles in most of the major sports, at least those of us in Philly know how to properly treat the black stuff.

There wasn't much news in between the past week until this past Friday, when I had my first appointment with Dr. Szarka (my medical oncologist) since I finished chemo three months ago. I went in and they were packed, so I got to wait in the infusion room. I shrug off alot, but I fully acknowledge sitting in "The Comfy Chair (tm)", the place where I got poisoned twelve times in the last eight months... Kinda freaked me out. Mercifully, we didn't wait there long, and went to an exam room. In popped Dr. Szarka, and the comments on my hair started immediately!

The good news: My bloodwork looks fantastic, the CT from when I had breathing problems showed nothing, and I appear to be in great health. The bad news: My cough and slight issues with breathing may potentially be permanent. As she described it, I hit my lungs with Bleomycin (one of the chemo drugs) and radiation - Between the two, I probably have some scarring which makes my lungs less flexible. My airflow is great, but when I try to expand my lungs completely, that's when I get the cough and tightness (scarring). Makes sense. When I asked if anything can be done, she said it may get better over time, but the main thing that would help is losing weight.

Yes, my weight became the central focus in fact. She beat my butt over it. Then she had the audacity to apologize for being rough on me about it! Listen, one of the main reasons Sue and I LOVE Dr. Szarka (beyond her expertise) is the fact that she does stuff like that - She cares and isn't afraid to joke and bust my b*lls about things that are important. I feel like I'm having a conversation with her, rather than listening to a clinical presentation.

So, I need to drop weight. Away I go with that then.

Finally, I got an email Friday night from Kate Weissman from the Leukemia & Lymphoma Society. I've been asked to be the featured speaker at the Philly area kickoff for Light the Night. The Light the Night campaign is one of the major fundraisers for the LLS, and one in which the family and I will be taking part in. Besides being a night to raise money for the LLS, its a night to celebrate survivorship with the ones you love, and remember those who lost the fight.

Naturally I'll be there for myself and my family (who went through this fight with me), but I'll also be sure to throw a prayer in for Sarah, someone who helped me immensely in the early, uncertain days of cancer treatment. When she passed on earlier this year, the world became a darker place for it.

I'm completely honored to be speaking at the kickoff, and I look forward to it. Its just 5-10 minutes where I'll share my story, but to get the chance to simply say thank you to those who help keep the LLS going... Priceless.