Relentless Mettle – My Cancer, My Rules Now Available

My new book, Relentless Mettle – My Cancer, My Rules is available for download via the following distribution channels: 

 

Publisher Direct 

Apple iBooks

Amazon Kindle

Barnes & Noble Nook

Kobo

 

I didn’t write another book because I have this insatiable desire to be an author. I wrote this book for a couple of very simple reasons. For starters, writing has always been very therapeutic for me. This exercise was no different. More importantly, I wanted to tell my story in a way that would give other patients hope, and perhaps remove some of the fear and uncertainty associated with a cancer diagnosis. If one person reads my book and it eases their mind and makes their journey into the unknown a little better, I’ve accomplished my goal.

 

20% of all sales royalties will be donated to The Leukemia & Lymphoma Society.

 

Here is your excerpt of the day:

 

 

“Diagnosis is scary. Disease is scary. Treatments are scary. And our own mortality is the scariest of all. But there truly is safety in numbers. There are a number of excellent patient resource groups and services that are available and I encourage you to ask your doctor for a good listing of resources and educational materials. Visit only recommended and approved websites, and please, under no circumstances, should you take off on a wild Google search mission to try to become an expert on your disease. I made that mistake.”

 

 

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Checking In and Checking Up with CLL

I reported out on social media last week that I received a good checkup with from my oncologist last Friday. While that is a very true statement, let me take a minute to elaborate exactly what “good” means. I walk out of his office at the conclusion of any appointment with an agreed upon understanding of my status and my path forward. But a lot of dialogue takes place with my doc during that visit. It’s not merely a blood stick and a “see you next time”. 

Technically, my white count was a little high by “normal” standards; however my numbers were in line with MY relative “normal”. A normal WBC is typically between 5,000 – 10,000 white blood cells per microliter. (That standard will deviate slightly by source but they are all close). On Friday, mine was about 26,000. While that may appear alarming, it’s really not, given that all other counts and disease markers were in check.

I am however experiencing a few symptoms that are connected with the disease. The good news is that these are relatively minor in nature and more of a discomfort and annoyance than anything else. These symptoms are an indication that the disease is present, but not present enough to warrant any kind of chemotherapy or monoclonal antibody therapy treatment.

Without oversharing, I will explain a little about some of these symptoms because there is no doubt some of my patient buddies will dial right into this level of detail. My biggest issues relate to the number of lymph nodes that remain fairly enlarged. Nodes around my neck, groin, armpit, tonsils, and chest area are enlarged. Some of these itch, some hurt, some make swallowing a little more difficult at times. One is pulling on a nerve and tendon in my arm that leads to tingling and numbness, and other nodes just look big and don’t bother me at all. 

No matter how I physically feel leading up to these appointments, the few days prior are always a little stressful because I just never know what the lab work may indicate. Dr. Shore reminds me that I put too much stock in those numbers and is good at helping me dial the expectation back and reset that normal bar. Vitals are taken, and blood samples are first drawn by the nurse. With the lab on the premises, my blood results are at my doctor’s fingertips the minute he steps into the room. So my doctor and I always go through our standing question, answer, and dialogue as he first enters the exam room.

We talk through my blood counts, we talk through my current list of issues and concerns, we have very healthy and therapeutic discussion around treatments that are in the development and approval pipelines and how bright the future looks for chronic lymphocytic leukemia patients with drugs like Ibrutinib and Treanda. On Friday we also talked about some of the things that we could do to try to wrestle down my enlarged lymph nodes. We always have good dialogue but ultimately Dr. Shore ends up putting the control back in my hands and asks, “so what do you want to do”? I often struggle with that question. In reality, I know that he knows what he wants to do. But he wants the path forward to be collaborative and mutually agreed upon, and I respect that. He has an effective way of guiding me in the direction he thinks is best for me, without dictating what he thinks needs to be done.

What I also appreciate about my relationship with my doc is that during every appointment he asks how my racing and training has been going. He fully gets my lifestyle and what’s important to me and does what he can to support this where he can. It’s important to him if I’ve noticed any changes in my training or racing efforts that may possibly have disease implications. And if so, that would have an impact on potential treatment options.

In this appointment, we agreed upon an additional round of a steroid taper (No, not anabolic). It’s an option that has been effective in the past, and one that I handle well, except for a little loss of sleep during the first couple of nights. That decision didn’t come without even more dialogue around the long term use of steroids as a treatment option. But we landed in a good and healthy place.  I walked out feeling emotionally healthy and “in check”. I also walked out feeling like I had the green light to resume full bore training these last couple of months before Ironman Maryland.

In true Dr. Shore fashion, as we wrapped up our visit, he asked “so when do you want to come back?” I barely got out an audible “uhhhhhh…, ummmmm…” when he quickly replied with “OK, I’ll see you in two months”.

So there you have a brief recap of last week’s “good checkup”!

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When Life Happens, and Then Doesn’t

I know I’ve been a little quiet as of late. Perhaps you haven’t noticed. It’s been a rough several months for me and my family. I’ll try not to dwell too much on the things that have gone wrong, however, I think mentioning them helps me keep focused on moving forward, with brief pauses for reflection.

Things started to unravel back in November when the health of my mother in law and father in law began a slow and steady downhill spiral. For several months they bounced back and forth between home, the hospital, a nursing care facility, and finally hospice. The family met frequently to discuss future plans and needs which addressed all areas of concern and covered solutions for all possible outcomes. While the meetings were very necessary, the mere fact that they were needed placed additional stress on everyone. We didn’t want to have those conversations, but we knew we needed to. All of this was happening while we were also regularly visiting my 90 year mother in her nursing home. We knew she didn’t have too much more time with us, but we weren’t too concerned with her immediate health.

The spring brought a rapid fire onslaught of loss and despair. In April we lost my father in law. In May we lost my mother in law. And then in June, after an abscess developed requiring surgical removal, we lost my mother. In less than 70 days, we became the oldest generation of the family. Couple that with life’s normal struggles and stressors and let’s just say that things took a toll on me, and the rest of our family. It was a dark and painful time, and one we are still trying to navigate through.

Through good times and bad, fitness, and locomotion have always been very important to me. Movement has been my therapy, my happy place, and my chocolate. Movement has been my therapist, my guru, my counselor, my teacher, my mentor, and my inner voice of reason. Fitness has been able to lift me up when I needed a boost and provide a healthy escape from some of the demons that can haunt us. Unfortunately, fitness also took a little bit of a hit during these past few months. In many cases, I was just too busy attending to the much more pressing issues at hand. But even when I did have time, motivation suffered and training was difficult. I salvaged enough to keep me afloat, but not without feelings of inadequacy and shortfall. I was forced to back out of a couple of races due to family priorities. Believe it or not, that made me question who I was or possibly even who I used to be.

It’s taken some time, but I seem to be working my way out of the hole, little by little. I’ve come to the self-realization that I still AM what I was. I needed to take some time to heal, and the process is nowhere near complete, but I still AM. I’m still that same person inside. Events may have left a mark on me and slightly changed my perspective on life, but in spite of everything that has happened I’m still sitting here writing and in (relative) control. In my book, that translates to me winning this battle.

While the summer hasn’t gone exactly as planned, life has given me many hidden blessings that I will embrace for the silver linings that they are. On the racing front, I am quietly and unassumingly reloading my attack on Ironman Maryland. I’ve still got a few key races on the calendar before the end of the year; hopefully these will help keep some of the air in my sails. As I’ve always said, I prefer quiet and subtle accomplishments. I’ve been racing long enough to be able to live with my accomplishments for what they are. In my years of racing, I’ve learned that it’s pretty easy to dedicate time and energy to a race, have all of the stars align, and turn out a good experience. The challenge is doing all of that when the stars are colliding into one another, and colliding into you.

The size of your footprint is far more important than the sound of your footsteps.

Be proud, but be humble.

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Ridley Swim Camp Talk

On Wednesday 8/5 at 6 PM I will speak to this group of kids on perseverance, turning adversity into accomplishment, and balancing sport with life. Camp details are below!

 

 

GREEN RAIDER SWIM CAMP The Green Raider Swim Camp provides young athletes with a unique opportunity to becomebetter all-around swimmers, while also having a GREAT time at camp.

 

Campers learn proper technique from Kevin Pierce, the head coach of Ridley High School’s swim team, as well as other coaches, high school & college swimmers that result in more confidence, increased speed & a stronger passion for the sport.

 

Open to boys & girls ages 9 to 14. Each camper will receive a t-shirt. Camp will be held August 3rd through 7th from 4:00pm to 7:00pm at the Ridley High School Pool. Cost is $110 per swimmer, $90 each additional family member. *Participants MUST be able to swim one lab of all four competitive swim strokes.

 

Any questions, please contact Kevin Pierce at kpierce@ridleysd.org

 

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A Message to our TNT TriRock Philly Athletes

Hey guess what? It’s almost race weekend. I’m not saying that to stir the anxiety pot, I’m saying that because I can’t believe this season is almost over.

As I said at SJU yesterday, please DO NOT try to cram months of training into these last two weeks. That is always a recipe for injury. If you’re a little undertrained, that’s ok. If you haven’t followed the plan to perfection, that’s ok. We know that will pretty much be the case with just about everyone, every season. The plans are written with the that in mind. If you followed it even loosely, and show up healthy, and stoked to enjoy race day and embrace the experience, you’re going to have a great day.

Start putting the race together in your mind. Think about what you will need to bring with you. Visualize transitions. Make any necessary last minute tweaks to your bike. We will continue to talk about all of this stuff over the next two practices and on race weekend.

I fully expect many of you to feel anxious and nervous leading into race morning. Your fear of the unknown is natural. I know you’re ready. Gretchen knows you’re ready, and we can’t wait to be there at the finish with you to celebrate your victories.

As always, thank you for all you continue to do in support of the mission. Thank you to the great class of alums who make up such a big part of this team. The fact that you continue to return is living proof that the program works, and is meaningful.

And to you first timers, thanks for putting your faith and confidence in us to help you realize your dreams, while you make such a significant impact in the blood cancer community.

Be safe

Be smart

Be brave

Be proud

Be humble

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Healthy Lifestyle with Eraldo Appearance

I recently appeared on Healthy Lifestyle with Eraldo Maglara and talked about the new book and other fun stuff. Check it out here.

Posted in cancer, health & fitness, motivation, survivor | Comments closed

Still Standing (I Think)

Still Standing (I Think)
I know we shouldn’t live our lives in the past. And I know nobody can predict or completely plan for what the future holds, so worrying too much about that is pretty senseless. (And I fully realize that both of those notions are easier said that done.) So then that leaves us the present. The here. The now. But what happens when the now just hurts like hell? What happens when things feel fractured and disconnected and the warmth that usually radiates through your heart strings is barely flickering?
You hope….and you pray.
And you find a way to believe that this darkness will fade to light as it always has in the past. You find a way to realize that you are still standing and whatever is taking shots at you must also be getting worn out by your perseverance, strength, and resistance. You find a way to grab hold of meaningful moments, even if they are brief and fleeting. A perfect cool breeze. The laughter of a child. The trusting gaze of the dog. The sounds of birds against the backdrop of a perfect spring day. All signs of life and all signs that love can be self renewing and hope can be perpetual.
It has been a very rough several months and there are more hurdles to clear but in spite of everything, I’m still standing. They say time heals. They say that which doesn’t kill you, makes your stronger. They say a lot of things.  Sometimes in the throws of adversity when all you want to do is kick, scream, cry, or ask the heavens “NOW what?” you fail to realize that you really are getting stronger. You fail to realize that with a little strength, today hurts a little less than yesterday did.
With a little time we will find healing. With a little belief we will find solutions. With a little hope, we will live the new normal and it will be a great normal, full of life, love, happiness, and plenty of tomorrows.
Have hope and have faith for a better tomorrow. And when the suns rises on that tomorrow, extend a hand to someone who may not have found theirs yet.
Peace and love to you all.

I know we shouldn’t live our lives in the past. And I know nobody can predict or completely plan for what the future holds, so worrying too much about that is pretty senseless. (And I fully realize that both of those notions are easier said than done.) So then that leaves us the present. The here. The now. But what happens when the now just hurts like hell? What happens when things feel fractured and disconnected and the warmth that usually radiates through your heart strings is barely flickering?

You hope….and you pray.

And you find a way to believe that this darkness will fade to light as it always has in the past. You find a way to realize that you are still standing and whatever is taking shots at you must also be getting worn out by your perseverance, strength, and resistance. You find a way to grab hold of meaningful moments, even if they are brief and fleeting. A perfect cool breeze. The laughter of a child. The trusting gaze of the dog. The sounds of birds against the backdrop of a perfect spring day. All signs of life and all signs that love can be self renewing and hope can be perpetual.

It has been a very rough several months and there are more hurdles to clear but in spite of everything, I’m still standing. They say time heals. They say that which doesn’t kill you, makes your stronger. They say a lot of things.  Sometimes in the throws of adversity when all you want to do is kick, scream, cry, or ask the heavens “NOW what?” you fail to realize that you really are getting stronger. You fail to realize that with a little strength, today hurts a little less than yesterday did.

With a little time we will find healing. With a little belief we will find solutions. With a little hope, we will live the new normal and it will be a great normal, full of life, love, happiness, and plenty of tomorrows.

Have hope and have faith for a better tomorrow. And when the suns rises on that tomorrow, extend a hand to someone who may not have found theirs yet.

Peace and love to you all

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WEGO Health Guest Blog Post

I was recently asked by WEGO Health to contribute a guest blog post on my leukemia experience. Happy reading!

Click HERE to read.

Posted in cancer, charity, health & fitness, leukemia & lymphoma society, motivation, survivor, team in training, triathlon | Tagged , , , | Comments closed

Living With… Interview

I recently did this podcast interview for “Living With…” I hope you enjoy it.

https://itunes.apple.com/us/podcast/living-with…episode-009/id975036684?i=339905118&mt=2

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Our Marine Rests

Today we said thank you, we love you, and we’ll see you again to my father in law, Tom Snyder. It was a wonderful tribute to an amazing man. My only regret is that I didn’t have the opportunity to have met him sooner in my life. He had a way of making you feel special. He had a way of making you feel important. He had a way of making you feel welcome. He had a way of making you feel loved. He will be missed but all that was good in Tom Snyder lives on in the hearts of all who knew and loved him.

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BONKGEAR Announces Partnership with Steve Brown, and Team Inspiration

Ashburn, VA (March 25, 2015) – BONKGEAR, designer and distributor of smart athletic apparel for endurance, strength and agility training, announced a partnership with triathlete, Coach, author, speaker and SURVIVOR Steve Brown.  Steve has joined the BONKGEAR team as a trainer, customizing a series of triathlon workouts for SURVIVOR themed, mobile-connected fitness apparel, with a portion of all sales revenue donated to nonprofit organization Team Inspiration. 

  

In February of 2006, Steve was diagnosed with leukemia. He underwent chemotherapy while still maintaining his baseline fitness level, often running home from his treatments, he quickly reached complete remission. By September of that year, just 7 months after his diagnosis, “RemissionMan” crossed the finish line of yet another iron distance triathlon – 2.4-mile swim, 112-mile bike,and 26.2-mile run. Brown chronicled his journey through remission and across the finish line in his 2007 book My New Race, and his new book, Relentless Mettle – My Cancer, My Rules, whichwas published in February 2015. 

  

“I draw parallel lines between the challenges we face in sport and those we face in life, says Steve Brown, I am thrilled to work with BONKGEAR, and utilizing the SURVIVOR apparel and training programs as another platform to encourage people to break through barriers and understand that all things are possible.” A portion of all sales revenue from the SURVIVOR apparel is being donated to Team Inspiration, a nonprofit organization that empowers individualsliving with cancer by providing exercise & wellness programs that improve their physical, mental, and spiritual quality of life. 

 

We began our entry into endurance sports with RUNNER and MARATHON themed apparel and workouts, says Chris Jones founder of BONKGEAR, “so when we decided to develop a program for triathletes we immediately thought of Steve Brown. Steve has inspired many people to compete and raise money for cancer charities through his personal story and his coaching.BONKGEAR is excited to play a part in empowering others to train and compete as well as raise awareness and funds for Team Inspiration.” 

 

“We could not be more thrilled, not only to have Steve as one of our coaches and spokesperson for Team Inspiration, but to have BONKGEAR behind us as well” states Roseann Dougherty, founder of Team Inspiration, an oncology nurse and cancer exercise specialist, triathlete, and USAT Certified Coach. 

 

Each BONKGEAR apparel design includes a hidden QR code that when scanned using any QR scanner on your smartphone, it auto-launches a mobile-enhanced website containing daily rotating workouts inspired by the theme of the shirt. Each shirt design includes 9+ custom training workouts, with three levels of intensity – Level 1, Level 2 and BONK level. 

 

About BONKGEAR

BONKGEAR originated in the heart of an athlete, adventure racer and designer. Their founder created custom shirts for his team at a local endurance race and received such interest in them he decided to design a line of shirts focused on popular training themes. 

 

YOU’RE WEARING YOUR WORKOUT – BONKGEAR apparel is the only brand that provides you with the means to enhance or maintain your fitness level by ensuring that you always have a workout with you (patent pending). 

 

BONKGEAR workouts are provided by certified personal trainers and geared toward a moderate to high fitness ability. BONKGEAR provides its retail and coaching partners with a toolset that allows them to publish a series of mobile workouts for their team/group. BONKGEAR hosts the personalized workouts on a co-branded mobile enabled digital site. 

 

About Steve Brown

Steve Brown is committed to facilitating positive change in the world – one person at a time. He is a triathlete, coach, author, speaker and cancer survivor. 

 

Steve has racked up countless triathlons and multisport events of all distances while racing for multiple philanthropic causes.  He is a volunteer coach for Team In Training and a mentor with The Leukemia & Lymphoma Society’s First Connection program and the Imerman Angels patient mentoring program. He is a contributing writer whose work has been featured in Philly Health Watch, TransitionTimes.com, Endurance Racing Magazine, Philly FIT, and Liberty Sports Magazine. Brown has also published five books, all of which relate to the intersection of his cancer and multisport lifestyle. 

 

Steve is a philanthropic ambassador for Newton Running, Team In Training’s Man of the Year for his local chapter, and recipient of the Blazeman Spirit Award. Steve and his wife live in Delaware County PA, where he also serves on the Board of Directors of the YMCA of Eastern Delaware County and is their LIVESTRONG ambassador. Through his personal appearances, coaching and fundraising efforts for Team In Training, Steve frequently inspires people to overcome obstacles in their lives, and to keep active and challenge themselves.

http://remissionman.com 

 

About Team Inspiration

Team Inspiration, is a 501(c)(3) nonprofit organization that empowers individuals living with cancer by providing exercise & wellness programs that improve their physical, mental, and spiritual quality of life. Team Inspiration offers programs for patients, family members and caregivers.

www.teaminspiration.org 

 

 

Media Requests

For media inquiries and/or interview requests please contact Danielle Willox at danielle@bonkgear.com or 443-262-2006

 

Connect with BONKGEAR

Digital: www.bonkgear.com

Promotional Video: www.bonkgear.com/how-it-works

Facebook: Bonkgear

Twitter: @bonkgear

Pinterest: bonkgear

Email: info@bonkgear.com

 

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