On February 24th, 2006 I was first diagnosed with CLL and introduced to this animal. And while I needed to undergo 4 rounds of chemo and 2 years of follow up maintenance chemo,  generally I felt in control, or made every effort to be,  and would walk past that cat’s cage and glance at the lock to check that it’s secure and then move on with my amazing fairy tale of a life. Often times even giving that cat a cocky glance to let him know that I am living my life on my terms in complete control of the mental grip and fear that his existence wants to bring to some people. Sometimes I would hear it snarl a little, or even stand up and pace just to try to let me know he IS still there.  But generally speaking, I walk past, give him a smirk, jiggle the lock, flip him the bird, and move on.

I take pride in how I continue to manage my situation for myself and my loved ones and,  for the sake of others, many of which I may never know. But who I know are out there listening and reading. The strength and support they draw from my is very important and I take that aspect of ‘my gift” very seriously. (There I go calling my leukemia a GIFT again!)

I recently had a situation where my pet man eater decided he wanted to let me know he was awake and restless.

Several weeks ago I was starting to have a few uncomfortable symptoms that very much resembled what I felt when I was first diagnosed close to 7 years ago. So I checked in with my oncologist and did the normal blood workup along with a CT scan. And as suspected, a few CLL symptoms have returned. My blood work was actually ok, but the CT scan showed very pronounced lymph nodes in my neck and in my throat. The good news is that the rest of my CT scan was quite good and clear but we needed to do something about the nodes that were on the move. Initially we tried to treat these symptoms with a low dose steroid to see what may happen.  Which wasn’t  much and came up a little short.

We talked about a number of potential treatment options and next steps. My symptoms are very localized and confined to my neck and throat. While my tonsils and lymph nodes are uncomfortable and very enlarged, and are making swallowing a challenge and even talking a little uncomfortable, the rest of my body is still rather “normal”. So that ruled out a conventional chemo treatment protocol. At this point anyway. The leukemia may be starting to awaken from a relatively quiet and innocuous sleep, but we can (and will) address this early and knock it way back off of the radar again.

So what we have agreed to is an aggressive hard core 4 day round of a high dosage mega steroid. And maybe repeat this in 2 weeks. It’s a relatively standard quasi chemo option in cases like this. The downside is that I need to take a few other things just as an infection preventative with this drug. The real downside is that I don’t sleep on this stuff – at all. Saturday was day one and I was awake most of the night. (Actually I was car shopping online at 3 AM. So perhaps there is a perk out of all of this because I am picking up my new car on Wednesday.)  This is only a 4 day blast so it won’t last too long.

Honestly, this is fine. The bottom line is, I am OK. But in the spirit of full disclosure I have included my family, friends and cancer community contacts along for the ride from the very beginning. This is just another chapter of the story to discuss and hopefully learn from. And I will treat this with the same diligence, determination, and even a little humor that I try to display with all of this. It’s just another opportunity to lead by example. While so much of my cancer journey has been good, there are some less favorable parts along the way that still must be dealt with. And I want people to take my lead in their reactions to all of this. Patients, and supporters alike. We’ll take care of business and lock the cat back up where he belongs.

And again I would like to remind people to not just live WITH their disease or condition, rather, live ABOVE it, and live loudly and proudly above it.That being said, the races and events on my calendar for this year are ABSOLUTELY still on. This little treatment blip should pose no threat to my 2012 goals.

Don’t focus on any (perceived) limitation. Focus on taking action and MOVING.

Hakuna Matata

Continue reading…

Founded over thirty years ago, Eagles Fly for Leukemia supports pediatric cancer and leukemia research at three Delaware Valley hospitals, helping their world renowned scientists in the quest for a cure.

FDi is free of cost for participants. The next program is June 2–3, 2012.

Please contact Kimarie Boerger, LCSW at 646-888-4736 for more information about this program or visit www.firstdescents.org

Looks Really Do Count! (…sort of)

This was simply an amazing night put on by an amazing family in honor and in memory of their son Nick, and the heroic crusade that he started through his vision of the HEADstrong Foundation.

HEADstrong is the real deal. The Colleluori family is the real deal. Every single person that I met Friday night was driven, committed, and loyal to HEADstrong and to the Colleluoris. You cannot spend 30 seconds with this family without feeling the love and dedication they feel for Nick and for Nick’s dream.

I thought I had orchestrated my thoughts and had a pretty good idea of the things I wanted to include in my brief acceptance talk. But the truth is I was thrown a little emotionally off guard as my bio was being read and my name called by Master of Ceremony Pete McCarthy. As Pete talked about my background, the entire Colleluori family gathered to the front of the room and stood in line, with Cheryl Colleluori holding a crystal plaque commemorating the award. Nick’s family stood tall and stood proud and walking up to that was quite a moving sight. And while it was almost a little intimidating at first, by the time I reached the family I was reminded of the solidarity that the warriors in this fight all share. I felt that strength. And I felt that our movement and march was even more powerful.

Of course what made this night even more special for me was the fact that I was able to share it with my family. Nothing I do …. no award that I receive, no finish line that I cross, counts without them. They are the reason and the motivation behind everything that I have been blessed and fortunate enough to be able to do.

The mission of the HEADstrong Foundation is to carry on the legacy and vision of HEADstrong founder Nicholas Colleluori through advocating, fundraising and supporting those affected by blood cancer and those working towards eliminating it. In just a few short years of existence, they have evolved into an organization with the strength and visibility of one ten times its size. The reason for their success in my opinion is that every person involved with this mission is personally committed and connected to who Nicholas Colleluori was and what he stood for; and continues to stand for.

But they cannot do it alone. And I was so impressed by everything that I saw on Friday night that I vowed to remain on board and to do whatever I can going forward to continue to drive Nick’s vision and eradicate blood cancers. Please learn more at www.headstrongfoundation.org

In the words of Nick Colleluori:

“Make use of the time you have and don’t stress the little things. Have a smile and enjoy what you can get out of life”.

Click HERE to listen to the acceptance of the award.

On Friday, March 23, 2012 the HEADstrong Foundation will roll out the lime green carpet for what has become one of the most special events in all of lacrosse. The 2nd Annual Lime Light Gala; an evening in remembrance of HEADstrong founder Nicholas E. Colleluori, honoring the patients, families, survivors and victims of blood cancer and benefitting Nick’s House, the Nicholas E. Colleluori Lymphoma Research Fund at the Abramson Cancer Center and the City of Hope.

The event will be held at the Hyatt Regency Philadelphia at Penn’s Landing from 6:30 to 11:30 p.m. Tickets are $200 per seat and there are sponsorship and giving opportunities still available. While the event includes cocktails, dinner, program and a silent auction, the true purpose is to build awareness and support for the fight against blood cancer.

This year the HEADstrong Foundation will present the Nicholas E. Colleluori Award to a survivor demonstrating heroics and perseverance in the fight against blood cancer. The program will also feature several lacrosse personalities, celebrities and other performers.

“Of all of the amazing events that the HEADstrong Foundation is involved with during the year the Lime Light Gala is the one that is most significant. It is a celebration of my son Nicholas’ life, what he meant to the game of lacrosse and most importantly what the lacrosse community meant to him. It is our hope that our guests will leave with a renewed appreciation of the work that is being done to improve the quality of life for patients and families of blood cancer and inspired to get further involved. We wish to extend an invitation to all that can attend the Lime Light Gala.” – HEADstrong President and Nick’s Mom Cheryl Colleluori

For purchasing tickets and more information on the HEADstrong Foundation and the Lime Light Gala visit www.HEADstrongfoundation.org. The event is a formal black-tie affair however guests are encouraged to wear lime green. Tickets are subject to limited availability.

Sugar House Casino will provide complimentary valet parking for guests of the HEADstrong Foundation’s 2nd Annual Lime Light Gala. Trolley shuttle service provided by Philadelphia Trolley Works & 76 Carriage Company will begin transporting guests at 5:30PM and will run through 8:30PM, service will then resume at 9:00PM and run through 12:00AM.

HEADstrong Foundation works to advocate, raise funds for and to support those affected by blood cancer or working to eliminate it.   Foundation generates funds for blood   research, distributes grants and provides assistance to patients and survivors of blood cancer. In addition, HEADstrong Foundation awards scholarships and grants for students with ambitions of entering the medical field. Founder Nick “Head” Colleluori” attended Hofstra University where he played lacrosse. While at Hofstra Nick was diagnosed with Non-Hodgkin’s Lymphoma. While sick he began counseling other patients and began laying the framework for what would become the HEADstrong Foundation, in an effort to raise cancer awareness and help others and future patients that found themselves in a similar situation. In August of 2006 he even found the strength to play in one last lacrosse game. Nick passed away on November 28, 2006 at the age of 21. Even though he is gone, his memory and relentless determination lives on through the HEADstrong Foundation.