LiveSTRONG recap

Distracted by earthquakes and hurricanes this past week it was easy to lose track of time for pulling together a blog post as a follow-up to the Philly LiveSTRONG extravaganza.

The LiveSTRONG event got off to a literal bang when Amy and I scrambled after work on Friday, 8/19 to get over to eastern PA and the LiveSTRONG village for packet pick-up and registration. No sooner did Amy and I check-in at our hotel, meet Anne Chen in person for the first time, and then arrive at the event venue when the skies turned black and prompted the LiveSTRONG staff to frantically shutdown for the night. Things continued to get interesting when we returned to the hotel following a team sushi dinner. The heavy rains had caused the hotel parking lot to flood and I needed to park the car at another hotel up the road where there was no threat of the car becoming a boat.

Aside from the muddy grounds on Saturday all went well for Mintz’s Mentschen participation in the walking/running events. The weather was terrific and this was capped by our own private pasta party on Saturday night where most of our team was able to attend. Sunday was an entirely different story. Many thanks to Kathy Lynch for bringing us two new Mentschen teammates for our walk team. Theresa Lizzio and Cindy Takacs are wonderful people and they both seemed to have had a great time. Ditto for Jordan Adler who was recruited by Dan Nies. Jordan did a combo walk/ride weekend and I think he’s been bitten by the LiveSTRONG bug. I look forward to having all 3 as ongoing Mentschen teammates.

Sunday, the day for all cycling events, started on the grey side and it really did look like we might skate by the rain holding off until all of our riders completed their chosen route distances. Amy and I rode the tandem with a nice sized posse of Mentschen and we completed the 23 mile route of rolling hills without having to walk a step. This was the hilliest ride we’ve ever done on the tandem and despite the physical challenge a good time was had by all. Albeit with some drizzle of rain as we rode.

Dan Nies, our only 100-mile rider, and Jim Nuccio who rode the 70-mile route weren’t quite as lucky. The skies once again turned black at around 2:30pm and opened up with torrential rain, thunder, and lightening while Dan and Jim were still on the course. Long story short is that they both finished despite the VERY scary scenario that unfolded.

Mega thanks to all that have donated so generously to our Mintz’s Mentschen LiveSTRONG efforts this year. My final fundraising total was $5,654 and our team total was $28.071. Incredible.

The event weekend was somewhat bittersweet.

• I had the opportunity to meet and spend time with my LiveSTRONG email penpal Anne Chen who came all the way from Denmark to be with us.
• An old Rider College friend, MaryAnn Bellesi Faraci, came to visit me on Saturday afternoon. I hadn’t seen MaryAnn since Rider 30 years ago. Incredible fun.
• LiveSTRONG weekend is always a real lovefest that both humbles me and fills me with a year’s worth of good karma.
• Long time cycling friend and Mintz’s Mentschen teammate Stephanie Tobler relocated to Switzerland a couple of days after LiveSTRONG. Stephanie will be spending time with her grandmother and other family in Switzerland. While she’ll be missed I’m also very proud that she’s truly living life to its fullest. Way to LiveSTRONG Steph!!

One final note on the topic of LiveSTRONG. I can't thank my good friend Dan Nies enough for what he does on behalf of Mintz's Mentschen. Dan brings the energy, coordination, coaching, custom jerseys and t-shirts, and all-around positive vibe to our team. Our team absolutely would NOT exist in its current form without Dan. Dan, I hope you know how truly grateful I am for who you are and what you do. There's a reason we're called "mentschen" and Dan is our fearless leader (not to mentschen that he's the one who coined our name and motto). Time for a definition for those that need it. Mensch: a person of integrity and honor, a particularly good person, like "a stand-up guy", a person with the qualities one would hope for in a dear friend or trusted colleague.

Tomorrow is 2011 treatment #15. Not too much to say about it other then that it’s the last that will be on a 2-week cycle. Given that it’s been taking me a little longer to fully recover from each treatment an extra week in each cycle is something that I look forward to.

Below are some pictures from the LiveSTRONG weekend.

Our amazing 2011 Mintz's Mentschen run/walk team

Our amazing 2011 Mintz's Mentschen cycling team

Amy and I cruising by on the tandem at the ride start

(thanks Anne for the great pic!!)

Jacked to the Max and riding in memory of Danny, Scott, and Jen

LiveSTRONG live!!

For those of you that might want to look in on the festivities that take place this weekend for the Philly LiveSTRONG event it seems that you'll be able to do that from the comfort of your home. The Lance Armstrong Foundation is kicking things up with technology this year and they provided this link that is supposed to have streaming video of the Finish Line area.

Enjoy!! Click here to access the streaming video website.

Treatment continues... but that's OK

A quick update following treatment yesterday and our conversation with Dr. Richards. It came down to the decision of stopping treatment until the next scan interval or proceeding with treatment to “the best possible result”. Even though the scan results were good and the remaining lesions are very small we opted for continuing treatment and thankfully Dr. Richards was in full support for going to a 3-week treatment cycle. This next one will stay at two weeks but starting in September we’ll go to 3-weeks in between treatments. As you might imagine that’s great news as far as I’m concerned because I’ll be doing everything I can to put that 3^rd week to good use. Generally I’m close to normal after about a week so this will give me some decent “normal” time in between treatments.

Fundraising by the Mintz’s Mentschen team of 23 is really on a roll! We’re up to $26,416! I’m very excited for the ride this weekend.

And as we did in February of this year we’ll also be participating in Cycle for Survival in 2012. Registration for that event will happen soon so expect to see me mentioning that event in the September timeframe. The event itself will be in February 2012 and it directly funds development of clinical trials at Memorial Sloan-Kettering. Last year the event raised over $4 million. Given the recent passing of the event founder, Jennifer Goodman Linn, this will be an extremely emotional event.

Catching up.... and IT'S LIVESTRONG WEEK!!

Two weeks between posts…. A bit long, I’m sorry about that but really I’ve been a bit distracted with treatment and its side effects, a PET scan, and the build-up to the LiveSTRONG event that is this coming weekend.

Treatment #13 came and went without incident on August 2nd. The pre-treatment blood counts showed that my white blood cell count was low (2.6) but Dr. Richards said it has been low off and on and that he wasn’t concerned. The 2-week cycle went without incident.

That was closely followed by the quarterly PET/CT scan on August 8^th. To make a long story short it didn’t bring the completely clean results I was hoping for. Some of the lesions that we have been watching on my liver actually DID “disappear” from the scan but there were some low-level SUV hits in a couple of other spots that translate into continued treatment. Treatment #14 will be tomorrow and Amy and I will be having a detailed conversation with Dr. Richards regarding the treatment protocol and frequency. I’m sure that we’ll be proceeding with the same 3-drug cocktail but with the SUV levels being so low I’m hoping that we can shift to a 3-week treatment interval so that I get a bit more of a breather in between treatments.

This would also help to conserve the few remaining vacation days that I have. With a bit of luck maybe I’ll get an actual day or two off before the end of the year.

Jacked to the Max!!

As I mentioned, the LiveSTRONG event is this weekend. Amy and I will be picking up Anne Chen as she arrives from Denmark late tomorrow afternoon. The Mentschen will have an international flair this year! Our weekend of fun will start this Friday night when we begin to meet at the event site in Blue Bell and a group of us will participate in a 5K walk/run on Saturday morning. The bike ride is on Sunday and for the first time our tandem will make an appearance as I ride the 20-mile route with Amy. I’ll have a posse of Mentschen with me and as always it will be a blast. Out cumulative team fundraising is now up to $24,731!! I’m sure that we will reach $25,000 before the weekend. Heartfelt thanks to you all for your generosity.

The 2011 version of our custom Mentschen jerseys is very cool (see the picture above). Hopefully the Lance Armstrong Foundation will re-instate their best jersey contest as I think we’d be a top contender to defend our 1^st place finish of two years ago. Last year they didn’t have the contest.

This year I’ll be riding the LiveSTRONG event to honor the memory of dear friends that I lost to cancer recently. They are Danny Millman, Scott Winters, and Jennifer Goodman Linn.

Excitement of August.... PET/CT and LiveSTRONG event

Although my recent jaunts on the bike had been a real struggle there was no way that I wasn’t going to give it another shot this weekend. After all, treatment #13 is on Tuesday and, therefore, I won’t be doing anything for a week or so. So I went back to my tried and true flat local 27-mile route and made a slight tweak to the usual flight plan. Instead of our Mentschen motto of “start slow and ease up” I set out with a mindset of “ease up and then ease up some more”. And it worked! The weather was fabulous and that certainly helped but I cruised through and had the mind and body cleansing experience I was desperately needing.

Considering that for the first 3 years of my cancer battle I never had to exceed 7 or 8 cycles of chemo in any one year that Tuesday will be treatment 13 for 2011 is definitely weighing heavy on my mind. As I’ve been describing, the cumulative effects of the FOLFIRI chemo are starting to take hold so I look forward to the PET/CT that is scheduled for Monday, August 8^th and hope that it brings me news of remission and a chemo vacation for a while.

My thoughts right now are with my LiveSTRONG friend Anne Chen who is climbing Mt. Kilimanjaro as I type. Anne lives in Denmark and is a LiveSTRONG Grassroots volunteer that I met in an online group for LiveSTRONG. Although our relationship has been 100% over the internet I have come to know Anne as an amazing person that not only advocates for cancer survivors but that fights in the war against cancer through projects and organizations above and beyond LiveSTRONG. She has joined the Mentschen team and will be with us at the event in Philly. I can’t wait to meet her and to hear all about her African adventure.

Preparation for the LiveSTRONG event in Philly is coming down to the wire with the event itself only 3 weeks away. The first batch of2011 Mintz’s Mentschen cycling jerseys have arrived and the excitement is building. My fundraising total is now over $4,000 and the team total is above $19,600. If you can consider a donation that will help us to drive beyond the $20,000 that would be fantastic. My personal fundraising page can be accessed by clicking here.

More awful news

As I prepped for a quick blog post to provide my latest information I made the mistake of popping in to take a look at Facebook.

I was smacked with another piece of terrible news. You have read my comments previously about Jennifer Goodman Linn, founder of Cycle for Survival, so I won’t repeat all of that. This is simply awful news.

The Cycle for Survival community wishes to express our profound sorrow at the passing of our founder, and friend, Jennifer Goodman Linn, and we extend our deepest sympathy to her beloved husband, David, and their families. Jen lived fearlessly each day, and she brought out the best in us and in everyone lucky enough to know her. In her honor, we will continue to work tirelessly to carry out her extraordinary vision.

I will continue to participate in Cycle for Survival in support of Jennifer and in support of an outstanding organization.

I guess that I’ll press on with the few tidbits of information specific to me. My treatment went well yesterday and the feedback that I was given on my fatigue is that my blood counts are all in a good range, however, the fatigue is common with extended treatment with camptosar (irinotecan). So hopefully my next treatment on August 2^nd will be my last for a while. Otherwise we may just need to change things up a bit.

I did also get the Rx for my PET/CT and that is scheduled for Monday, August 8^th.

Treatment day

Today is treatment #12 for 2011 and as I get closer to the next PET scan the excitement/anxiety is starting to build. The scans dictate everything and although I continue to feel well you just never know what is going to turn up. Results back in May were good and there's a chance that this scan will show that I'm in remission and that I can have a chemo vacation. The scan will be the 2^nd week of August. I should get the Rx today and I’ll call tomorrow to schedule it. See you soon Betsy, Shane, and Nick!

This past weekend a classmate of mine from the Union High School class of 1977 hosted an informal reunion at his Jersey shore home. What a blast! The weather was perfect and 50-60 people came. It was so much better then an expensive formal reunion because it was more of a natural social setting and everyone came to have fun. What was most special for me is that just about everyone came up to me and wanted to know how I was doing. Even more amazing is that I have received donations to the LiveSTRONG event and we may even pick up some people to join Mintz’s Mentschen and that will ride with me in my posse on the 20-mile route. These are the things that really hit home with me and that provide the emotional and spiritual support that I need. Sure, LiveSTRONG is something that I use as a mindset and that I try to have drive my “F cancer” badass day-to-day outlook. But it sure is fantastic to experience the generosity and genuine caring of people. Even from friends that I haven’t been in contact with for 34 years!! Amazing and truly moving. Thank you all. I’ll try to post a couple of pictures when get my hands on some.

Bailey arrived home on Sunday. She’s on her roadtrip from completing her bachelors degree at Indiana University to her graduate program at Florida International in North Miami. Unfortunately she’s here on week 1 of a treatment cycle but we’ll make the best of it.

Overwhelmed with sadness

My high school friend, Scott Winters, who entered hospice not more than 2 weeks ago has passed.

I'm very sad and at a loss for words at the moment. Following is the Facebook post from his wife.

With a great sorrow and profound sadness I announce the passing of my husband and best friend Scott Winters,on Tuesday evening,at twilight. Scott was a quiet man about his illness, many people not knowing of his diagnosis until he told friends when it was absolutely necessary. In honesty, he wanted to fight this battle full focus, sparing his friends and colleagues the stories of the pain and fear of Lynch Syndrome,a rare form of colon cancer (Katie Couric's husband Jay also had this hereditary based disease). Please keep our beautiful children in your thoughts and prayers. James is attending Bard College in early August (majoring in literature), and Olivia, who turned 14 on Mother's Day, is attending the Honors program at LaSalle Academy(following in her brother's footsteps). It is a time for rest and reflection now, because as I told our children,"We all had cancer, we lived it every day for two years and six months. Daddy is free now; no more pain." We love you Scott, and always will.

It's not about the bike

Lance was right, it’s not at all about the bike. I laugh when I’m on a ride and find myself thinking about how I love my bike. Actually it’s that I now cherish each and every ride for how alive it makes me feel. It’s really the riding that I love. Just last night I finished reading “It’s All About the Bike” by Robert Penn and he wouldn’t agree at all. How nice would it be if people could learn to value the little things, like bike riding, without having to gain that perspective through life changing experiences such as cancer?

And with that said boy was I humbled on the bike this past weekend.

I have become a bit bored with my local flat route and so I gathered the Mentschen for a similarly short ride at Washington’s Crossing on Sunday morning. That was mistake #1 (the rolling hills shouldn’t have been poo-poo’d. Yes, I was a bit cocky). Mistake #2 was that Amy was going to join me to do this ride on the tandem (the tandem is not even close to the ease of riding my single bike). Long story short is that we got 6 miles out and I was totally fried. Trying to go further made no sense and we were able to turn it back around and got back to the park with little trouble. In 2008/2009 I made a similar mistake when I was in treatment and also thought with my heart and not with my head. Luckily I didn’t mess up Gary, Stephanie, Doreen, and Grace too much as they were able to head back out after accompanying Amy and I back to the park.

Yesterday was a terrific weather day and so I headed out for my flat ride here at home. Stubborn much? I got about halfway into the 27-mile route and started to feel my gas tank nearing empty. I finished the route nice and slow which in itself wasn’t so terrible because really I just wanted to ride and clear my head. But clearly something is up. Next Tuesday when my blood counts are checked pre-treatment I’ll be asking some questions to see if anything shows up there. It could also be that 11 treatments into 2011 that chemo is starting to catch up with me. That would be the simple explanation.

Thanks to all that have donated so generously to my LiveSTRONG fundraising. I’m over $3,700 raised and the Mentschen team total is now over $12,500! Not too shabby. Donations can be made on my fundraising page by clicking here.

F Cancer

Treatment #11 for 2011 is well on its way to being history and once again things are status quo on that front. Not feeling great but not so awful. I just shut down from my work day and I'm heading upstairs for some couch time.

But before I do I need to vent a bit since this past weekend was way too heavy with bad news on the cancer front. First I got the very sad news that our long time family friend, Danny Millman, passed on Saturday after a horrific multi-year battle with bladder cancer. And then on Monday evening I learned that a high school friend of mine that I had been in touch with via Facebook has entered hospice after a multi-year battle of his own with colon cancer and other complications.

Needless to say this has really pissed me off and reinvigorated my efforts in support of LiveSTRONG and Cycle for Survival. To see the suffering that cancer can inflict and the impact that it has on families is tough for me to deal with. So the Mintz's Mentschen efforts continue and with one of our mottos coming right up front and center this week... F Cancer!!!

Another similar sentiment is on the business card of our staff member contact from the Lance Armstrong Foundation, Dylan Trakas.

Two weeks passed already!?

Tomorrow is treatment #10 for 2011 so as usual I’m going to check in here before I start the week where I typically don’t want to spend any more time than absolutely necessary at a computer.

I’m doing well and continue to have people tell me that I look great. I guess that all things considered I do look OK but I sure wish that I felt a bit better (and eyebrows would be cool too). Toward the end of treatment cycles I feel “ok” but generally I’m feeling like I could take a nap at a moment’s notice. I’m trying hard to work through this though and have managed to keep a fairly steady routine of bike riding. I even managed to take a weeknight spin through my 27-mile loop last Wednesday. That was a thrill on a beautifully sunny day and I enjoyed it immensely.

My high school track reunion was, as it is every year, a lot of fun last weekend. We presented the scholarship we have in Coach O’Dell’s name to a very deserving graduate. Next year is our 10^th annual reunion so we hope to be able to kick things up a notch for that one by coercing alumni from around the country to visit us here in NJ.

Class of 1977 (l-r, Mark Cheben, me, Coach O'Dell, Buddy Schweikert, Mike Halloran)

Over the past few weeks I have been trying to support some friends that are in a variety of scenarios with cancer. One was just diagnosed, two have just had surgery, and another two have had the intensity level turned up on their cancer battles as their respective treatments have stopped working. Needless to say this has been a few week period where I have used the “F**k Cancer” phrase quite liberally. I feel good that I’m in a position to provide some firsthand support for these friends and they seem to appreciate my words as a cancer survivor. I can’t help but wish that I could do more. For now I have to focus on the collective efforts of our Mintz’s Mentschen team as we participate in LiveSTRONG events and also Cycle for Survival. Cancer is so ugly with the affect that it has on tens of millions of people. If you can support our fundraising efforts with even a small donation please accept my heartfelt thanks. Click here to access my fundraising website.

As a parting note check out this scan of a birthday card I received from the Quinn's. It's great.

Status quo.... and that's a good thing

Treatment #9 was yesterday and I'm happy to say that there's just not too much to say about that right now. My blood counts have remained stable and we're scheduled for treatments into early August. As I had mentioned, this will be on a 2-week treatment cycle so it doesn't leave too much time for recovery and real exercise but I'm holding my own just fine.

Our Mintz's Mentschen group is growing very slowly (we're up to 18 people) and our fundraising grand total is just shy of $8,000. Not too shabby but we're obviously hoping for more. My fundraising page can be accessed by clicking here. Thanks for your consideration. With all of the recent news about Lance Armstrong please know that his cycling is entirely separate from what he has done legitimately with his foundation in support of the 28 million people currently battling cancer. The Lance Armstrong Foundation is a worldwide advocate for cancer research and support services.

And for a bit more excitement on the Mintz's Mentschen topic is that we'll have new cycling jerseys for 2011. Check it out!

I'm constantly trying to recruit new team members. For those of you that may be intimidated for some reason please know that I'll probably be just coming off of treatment and riding the same short distance that I did last year. Last year was a 25-mile route and I believe the LiveSTRONG website shows this ride option as a 20-miler for this year. Please come join my riding posse!

MS Bike Ride - Missy Express

I had mentioned the 25-mile MS Bike Ride from last weekend and was able to corral a picture we took post-ride. There was one other picture that was taken at the mid-ride rest stop that included Missy but I don't have my hands on that one yet.

Stephanie Tobler, Grace Capato, me, and Dan Nies

And treatment continues...

A 2-week gap between posts….eek! Sorry about that.

I’m one week out from treatment #8 of 2011 and as I had mentioned in my last post this was also going to be the first opportunity for me to discuss the details of the May 2^nd PET/CT scan with Dr. Richards. The discussion, with Sasha listening intently, was actually quite short since Dr. Richards and I are in complete agreement with regard to go forward treatment plans. The SUV 4.3 reading that showed in the scan clearly indicates that we’re not quite where we need to be for a treatment pause and so we continue. We’ll continue through the summer until the next quarterly scan which will be in early August. The biggest downside of this is that while I’ve enjoyed 3-week treatment intervals this month I’ll be returning to a 2-week cycle after treatment #9. Oh well.

Cycling has been going well and I was even able to ride this past Saturday in the MS Coast the Coast ride in support of my friend Mary Ellen Gervasini who was diagnosed 4 years ago with MS. I wasn’t quite sure what to expect since it was a treatment week for me and Amy was more than a little bit concerned. The weather gods came through with an absolute stunning day after a full week of rain and the topper was that I also felt terrific for the entire 25-mile route. It turned out to be one of those stop and smell the roses days that I won’t soon forget. The ride with my usual crew of Dan Nies, Grace, and Stephanie made for an awesome awesome day.

This Friday I head for Colorado with Sasha. The mission is to get her settled in her off campus digs while enjoying a bit of R&R with the Quinn’s. This means that I won't be home for my birthday but we'll just have to celebrate (at least a little) when I get back.