The Patient Story Interview

Here is the finished product of the 5 part interview I recently did for @thepatientstory. The 5 segments track my 15 year journey from initial symptoms all the way through to the targeted therapy treatment I’m currently on…. and all 54 rounds of chemotherapy treatment in between. I usually struggle a lot with listening to my own interviews but I think the team did a nice job with this project.

CLICK HERE TO VIEW AND READ.

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Team Relentless Grace

IMG_6205A week ago we were entertaining the concept of a running wheelchair to run and race with MG. Fast forward a week and BOOM…. Thanks to some very generous donors who contributed to our crowdfunding effort we placed our running chair order today! And thanks to a few creative minds and a collaborative effort we will soon be on the road running and racing this beaut under our new identity Team Relentless Grace. The name represents my 15 year relentless battle with leukemia and the strength and Grace that Mary Grace demonstrates everyday throughout her ongoing and life altering journey. The logo colors are meaningful and represent cancer, leukemia, stroke, and aneurysm awareness.

fullsizeoutput_1a7eThank you to everyone who was a part of this project for the incredible support and generosity you’ve shown as well as the support you’ve shown through the years. We’ve been given a new and very exciting opportunity for the next chapter in life. Stay tuned for more exciting updates.

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National Cancer Survivors Day 2021

It’s been a long time since I’ve posted here. It’s not because I haven’t been active on social media. I’ve been very active on Facebook and Instagram but I’ve done a poor job of posting updates here as well. I vow to be better!! ….

195279425_10226045122742535_6345574053335448850_nA few last words on this year’s National Cancer Survivors Day … In short, thank you to everyone who has played a part in my sustained survivorship. As many of you know, my leukemia is chronic and incurable. Our goal is to constantly maintain and manage the disease with the hope of beating it into submission and keeping me in remission. To date that has required 54 rounds of IV chemo, countless rounds of steroid therapy, and an oral targeted therapy treatment drug. “Surviving” is a present tense exercise for me. Every day I manage my leukemia, remain diligent with my drug therapies, and control what I can to keep my blood work and lymph nodes in check.

To everyone who has supported me along the way, thank you. To every doctor, nurse, receptionist, and scheduler who works tirelessly to put people like me first, thank you. And to my primary oncologist whose name I won’t mention but who has been my #1 go to for all 15 years of my disease, THANK YOU for all you’ve done and for putting up with my relentless questions and challenges.

In closing, please be kind. Everyone you meet is facing their own challenges. Support them. #survivor #cancer #thankyou #remission #cancersucks #bloodcancer #cll #leukemia

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National Cancer Survivors Day 2021 is Coming!

197319324_10226045122662533_1588725611016742197_nNational Cancer Survivors Day is almost upon us. And I for one plan to make it much more than a single day celebration. So buckle up. Today I look back on the book that I wrote 6 years ago. This was the fifth book I had written and I felt that it was a pretty comprehensive snapshot of my cancer story. And it was…. 6 years ago.

As the cancer Wheel of (mis)Fortune would have it, my body stopped responding to the chemo drug Bendeka, which I spoke about in great detail in the book, not long after that book was published. In time we would turn to the next treatment drug in the arsenal; Ibrutinib, which is what I’m still on today. Some may look at that as a failure of one drug which forced us to look to another. I’ve made the choice to view it differently. The fact is, throughout my 15 year journey, I’ve been on rituxan, fludara, bendeka, decadron, prednisone, and Ibrutinib to keep my leukemia in check. And I don’t look at any of those drugs as having failed me. Rather, I embrace the reality that anytime I’ve needed a different answer, one was available for me. And I embrace the fact that there are more available options at the ready and others in the pipeline. There have been many more chapters to my story since that book came out. And there are times that I wonder if I have a continuation in me. Maybe I do someday, but not today.

197313453_10226045122622532_4688561822834653901_nToday I just celebrate my place on this planet and try to laugh often and not take my said place on said planet too seriously. Peace. #survivor #cancer #nationalcancersurvivorsday #ncsd #lls #cll #remission #ibrutinib #bendeka #fludara #rituxan

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Man & Woman of the Year Video

Click the link to see the video interview I did with Leukemia & Lymphoma Society’s Man of the Year candidate Derek Fitzgerald.

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Philly Marathon is BACK!

IMG_6052Well…THAT FELT GOOD. I don’t think I have clicked the SUBMIT button to register for a live and in person race since the 2019 NYC Marathon. It felt very good to pull the trigger on this year’s (half) @philly_marathon. This is one of my all time favorite races at one of my favorite times of year. This year I’m racing and raising funds for the American Association for Cancer Research (AACR). More on that in the coming months. Today we simply celebrate the clicking of the button!!

#phillymarathon #fallinphiladelphia #running #runphilly

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Cabrini Reunion

Great catching up with my old Cabrini buddy JK – Joe Kravitz to connect and score a few copies of Relentless Mettle. Grab your copy HERE! #cabrini #cabriniuniversity #cabrinialumni #survivor #relentless #relentlessmettle

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The Long Run

My daughter wrote this piece for a non-fiction & memoirs creative writing assignment. While I’ve lived every step of this journey in real time and in the first person, hearing a loved ones interpretation of these same events proved very moving for me. Hopefully you’ll appreciate it as well.

The Long Run

fullsizeoutput_15f3Steve Brown sits attentively at the edge of his grey and white recliner with one ear tuning into our conversation and one ear down the photo lined hallway listening for his wife. Eavesdropping for evidence that his newly disabled soulmate was on the move became a sharp skill of his over the last year, and he’d built up an impressive radius at that. 33 years of marriage will do that to you. Before long, Mary Grace let out an inaudible shuffle that sent Steve to their bedroom in just three strides. At 6’2, he normally covered more ground than most when he walked. When Mary Grace needed him, the speed at which his muscular build would disappear before your eyes and materialize at her side defied the laws of physics. His wife was awake from her post therapy nap. They glided back down the hallway together; they moved in sync even before they needed to in order to survive. Mary Grace recovering from a stroke and Steve living every day with an incurable form of cancer, they are no strangers to the painstaking practice of mind over matter. Steve’s story is one of hope. His message is clear. “My cancer, my rules. I choose to live above it, not just with it,” he says as he begins his story.

They had only been in their apartment for the last three months. They had spent the entirety of their happy marriage in their previous home, which only boasted a SOLD sign this past July. It was a bittersweet move that was essential to improving the quality of their new life. From the outside, the uniformity of the apartment complex’s brick buildings left little room for personalization. As a result, residents vaunt their small patio spaces that are each thoughtfully tailored to set them apart from their neighbors. A string of warm, swagged, Edison bulbs highlight a hanging metal bicycle and a small bistro set on Steve and Mary Grace’s patio. Through the sliding door lies a cozy space that feels as if they’d been there for years. There are emerald colored plants everywhere, joyfully reaching for the windows. A cherry wood curio cabinet displays riches such as their wedding china and their most treasured religious artefacts. The dining table was dressed in its autumnal best with fall themed napkins and a milky glass blown pumpkin. The living room had a recliner for Steve and a recliner for Mary Grace; far enough away to fit a small table between them but close enough together to still hold hands. The couch was Puddles’ domain, their tricolored beagle rescue aptly named for his love of getting himself in trouble in the rain. Despite the many lamps, the room was lit only by battery operated fairy lights. The scene was enough to lower your pulse; this was done by design. There was Puddles, sleeping soundly belly up with his favorite bone close by and taking up the entire chestnut colored sofa. And there was Steve, sitting in his chair waiting lovingly to be needed. The flecks of silver in his stubble betrayed his otherwise youthful appearance. In fresh New Balance sneakers, a marathon finisher t-shirt, and athletic pants, Steve looked as if he could easily take off running at any moment. There was nothing sixty about him.

Steve wore New Balance’s to honor his dad, Norman Brown. “These are my NBs,” he names them fondly. Steve’s dad passed away over a decade ago; a loss that hasn’t gotten much easier for him no matter how much time has passed. His parents love story is something out of a novel. Army Seargent Norm Brown travelled back from the South Pacific after World War II to his sweetheart Elaine Walker, a dancer for the Rockettes in New York City. He swept her off her feet and home to Ardmore, PA where they’d manage a hardware store and raise Robert, Chrissie, and baby Stephen. Ever present parents, Norm and Elaine cheered Steve on in everything he did. In his baseball games and soccer tournaments, their silhouettes were easily spotted in the stands. They watched Steve play soccer for Cabrini College and then semiprofessionally for the German club Danubia. They watched him fall in love with Mary Grace and bring two beautiful daughters, Jennifer and Danielle, into the world. They saw much of Steve’s life before they passed away ten years apart in 2005 and 2015. In his heart and on his feet, Steve brings his dad everywhere he goes.

Steve had always been an athletic person. When juggling semiprofessional goal keeping with starting a family and a career began to feel unreasonable, he decided to focus solely on his love for multisport racing due to the flexibility it afforded him. “I remember on New Year’s Eve in 1993 Mary Grace and I were enjoying a nice dinner at Gullifty’s in Rosemont. I told her that after several years of racing shorter races, I thought maybe it was time to do a full marathon. Just one. You know, to get it out of my system. I signed up for the 1994 Philly Marathon with my closest friend since 1st grade. We laughed, we cursed, we questioned our sanity, we laughed some more, we threatened to toss our running shoes into the Schuylkill River. We thoroughly enjoyed our journey. What an awesome day that was. It never really leaves your system though. That was 27 marathons ago,” Steve reminisced. That 1994 marathon finish was just one of the countless multisport accomplishments Steve would rack up in his life to include 5ks, 10ks, half-marathons, full-marathons, sprint-distance and half-distance triathlons, and eventually several iron distance triathlons.

An iron distance triathlon is a 2.4-mile swim, followed immediately by a grueling 112- mile bike, followed directly by a torturous 26.2-mile run. To officially become an Ironman, one must complete the emotionally, mentally, and spiritually demanding racecourse in under 18 hours. Steve is an Ironman 13 times over. In 2000, Steve finished his first iron distance triathlon, The Great Floridian. He did so on a broken toe; he had stubbed it early in the race on a buried log as he emerged victorious after the swim portion. His bloated vermillion toe would carry him across his first iron distance finish line, giving him the nickname IronToe. Under this newly dubbed alias, Steve registered for an Ironman a year. He was hooked. At each finish line no matter the race was his wife Mary Grace, watching as Steve’s two daughters Jennifer and Danielle joined him for the finishers loop. It became a family tradition. For for the rest of his life and no matter the course, Steve would always race, his daughters would always run him in, and Mary Grace would always be at the finish line. They even structured their vacations around it. This meant that after his Ironman’s, Steve would find himself trekking for miles in Mickey ears through Walt Disney World, or climbing White Face Mountain in the Adirondacks to its chilly peaks in order to partake in vacation activities. There seemed to be no limit to what he could withstand. This was a good thing; he was going to need that strength.

The year 2005 was a challenging one for Steve. His dad experienced surgery complications that landed him fighting for his life at the age of 82. Steve remembers holding his father’s hand in his ICU bed and audibly wishing he could be little again. He wanted more baseball games, more finish lines, more moments. But he wouldn’t get them. Norm passed away one shattering summer evening surrounded by family. Steve’s mom would experience complications of a triple bypass and an aortic valve replacement come Christmas the same year. With his father gone and his mother struggling with a literal broken heart, Steve’s growing pesky swallowing issue was hardly at the forefront of his mind. Eventually, he started having difficulty swallowing anything at all. His crowded throat began to threaten his air. This wouldn’t work given the amount of time he willingly spent gasping for it in a competitive setting. Steve saw an ear, nose, and throat doctor who would promptly order a tonsillectomy as a 46thbirthday present for him. To his delight, the quick and easy procedure would have him swallowing and breathing uninhibited in no time, pending some preoperative testing. A procedural blood test had other plans for Steve, as he’d soon learn his white blood cell count was seven times the healthy amount. Steve went from the Ironman finishers tent draped in a heavy new medal to a squeaky oncologist’s office chair draped in bewildering terror in a matter of months.

On February 24th 2006, Steve Brown was diagnosed with Chronic Lymphocytic Leukemia. Steve had stage two blood cancer. It was his lymph nodes that had swelled and thronged his throat, not his tonsils. Steve felt certain that his chart had been swapped with another sicker individuals records. People living clean, active lives were rewarded with good health, or so he thought. Triathletes don’t get sick. Except they do. Cancer does not discriminate on its hosts, and this forever form of leukemia had just gnarled and embedded its roots in Steve’s veins. Like whisper down the lane, his white blood cells turned each other against him at a rapid pace. With no known cause or cure for his diagnosis, Steve would need to fight back for the rest of his life.

Steve had a treatment plan, but his only immediate strategy was to find a hill, sprint to the top, and scream. He and Mary Grace drove to Veteran’s Memorial Park to carry out his mission. He’d call the steep, man-made mound Battle Cry Hill and visit it regularly over the years to exercise his therapeutic yell. He ascended the hill as a frightened cancer patient and descended a warrior. Leukemia messed with the wrong guy. Steve wouldn’t sit through chemotherapy without the promise from the staff that he would be cleared to run home. A stunned nurse Mary Lou would remove his IV and he’d take off jogging right from the chair, a practice she grew accustomed to in their time together in the chemo suite. “I have learned through the years that I am always happiest when I am moving. I’ve never known if I am running towards or away from something, but when I am moving, I am whole. It is more than just a way to stay in shape. It is how I have always coped, and it is my therapy. So, I held onto that and kept up my training by running home from chemo. I challenged the disease back and made up some of my own rules of engagement,” Steve said. That 1.5 mile run after each treatment signified his commitment to living ahead of his disease and not under it. It was a vow to himself to always try to outrun it.

Steve was diagnosed with cancer in February of 2006. In July of that same year, Steve completed the Lake Lenape Sprint Triathlon. In September of that same year, Steve completed the Chesapeakeman Ultra Distance Triathlon. Just seven months after his cancer diagnosis, he finished one of the world’s most challenging athletic tests in just under 15 hours. “The race was just a couple of months after my last round of treatments and I wasn’t sure if I would even get to the start line. Not only did I get to the start line, I had a great day thanks to a long list of people,” Steve recalled. He can still hear race director turned friend Rob Vigorito announcing his arrival to the finishers loop. “Vigo had spent months sending my medical reports to everyone he knew in the medical field. He worked for the University of Maryland School of Medicine, so he needed to make sure I was receiving the top care. He told me ‘Brown, when you finish my race and I mean when, your new name will be Remissionman’. He knew I’d finish,” Steve remembered. “Here comes Remissionman!” could be heard for miles from the finish line that night. As usual, he was flanked by his daughters, and his wife was waiting with tears streaming.

That race was 15 years ago. “Cancer has opened more doors for me than it’s closed,” Steve says positively; a choice of a mindset that is usually and understandably challenging for those in his position to possess. His diagnosis has come with 54 rounds of chemo, a myriad of steroid therapies, and a now a daily oral preventative medication to keep his leukemia in check. It has also afforded the opportunity for meaningful volunteer work as a coach for the Leukemia and Lymphoma Society‘s Team in Training. Steve coaches athletes to meet their multisport goals, while they raise money for the global leader in the fight against his cancer. He was dubbed LLS’s Man of the Year after raising an impressive $21,000 for the organization. He’s written five books, appeared on numerous news programs, and spoken at dozens of events inspiring those in their own fights in life. Steve has also been published countless times, most recently by WebMD.

He’s spent time in the company of multisport demigods like Dave Scott, Scott Tinley and Mark Allen. He’s befriended professional athletes Shep Messing and Vince Papali; stars he’d always looked up to. One of his most meaningful connections has been with CBS’s Survivor: Africa winner Ethan Zohn. As fellow motivational speakers, former soccer players, inspired philanthropists, and cancer survivors, Steve and Ethan became fast friends in both their personal and public battles against their blood cancers. They’d eventually travel the world together to complete the South Africa Ultra Marathon. “This disease has created more opportunities than it has taken away,” Steve echoes. The world was and is drawn to Steve’s strength and optimistic outlook. “My cancer mindset is much like my endurance sports mindset. Control the things that I can control. Take things in small bite sized chunks. Understand that everything will be cyclical, and I will run the gamut from elation to exhaustion in frequent boomerang fashion. Patience and positivity are crucial,” Steve shares. Patience and positivity remain the two pillars Steve has needed to rely on more than he has deserved to in his life.

In 2018, Steve’s wife was diagnosed with not one, but six brain aneurysms, some of which posed a grave threat and required prompt treatment. Mary Grace had been to every chemo treatment and every doctors visit; now it was Steve’s turn to show up for her. In this twisted new reality, the patient had become the caregiver, and the caregiver had become the patient. Again, his world was unjustly and completely rocked when Mary Grace suffered a stroke as a complication of a preventative procedure. He’d have to balance his fulltime career as a VP for JPMorgan Chase with being a fulltime caregiver as his wife was now completely dependent on him for her activities of daily living. He juggled bringing Mary Grace to her many therapies and appointments with his own cancer follow ups and care, knowing that even one dropped plate could be catastrophic for either of them.

Realizing the difficulties of living and working remotely in a two-story home, Steve and Mary Grace planned their move to single floor living in the spring of 2020. Steve took a short family leave from his job to focus on the move, and he worked tirelessly to both prepare for buyer showings and shuttle their belongings to the apartment. He knew they’d breathe much easier in their new living space. Their complex was close to their now grown daughters, who would check in on them more than they’d ever deem necessary. By August, they officially said goodbye to their home of over 30 years.

Their new second bedroom would boast an affectionately arranged office for Steve full of his many medals and plaques. A dedicated workspace that also served as a home for Steve’s displayed achievements was an ammenity that he hadn’t enjoyed before. Finishers photos and trophies would shepherd him through his workdays now, reminding him of all he has accomplished. His family leave would soon end, and he had a perfect place to get back to work. Unfortunately, Steve would receive even more bad news upon returning to his job. He was informed by his superior that there was no longer justification for his role in the company. Steve’s long anticipated exhale would have to wait, as he was given 45 days to find a new job.

Those 45 days ended a month ago. Today I sit with a still unemployed Steve after a morning spent networking, applying, and interviewing for a new job, and an afternoon spent supporting Mary Grace in her hours-long rehabilitation therapies. It would be easy for him to sink into despair and mentally admit defeat. It would be easy for him to choose anger and to lose himself in fear. When you weed through the mounting trials and examine the constants in Steve Brown’s life, one finds the keys to his survival. Steve is armed with an unparalleled optimism, and a unique ability to make diamonds out of piles of shattered rocks. Steve is elevated by his devoted family, his nurtured athleticism, and his immeasurable inner strength. “The reality is yes, one of us is recovering from a brain aneurysm related stroke and one of us is on a targeted therapy drug for incurable leukemia. One of us is on disability and one of us had their job eliminated. But we also have hope. We have perspective. And we will continue to smile and give thanks for everything that we do have. Which is a hell of a lot. Life is still good,” Steve reflects. When asked what he plans to do next, Steve simply replies, “I think I’ll go for a run.”

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Living with CLL – WebMD

WebMD published a “Living With CLL” patient guide and asked me to contribute to the effort. Follow the link for the complete guide but my page is below.

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“Siriusly Fearless”

119788329_196593121855552_7739854181473045105_oTune in this Sunday, September 27th at 2:30 EST for “Siriusly Fearless”, a unique event focusing on stories of inspiration, survival, and courage.

Featuring @siri.lindley.3 and @RebekahKeat, Siriusly Fearless will share insights from people who’ve faced the trials of cancer, and gone on to make an impact on the world around them. Including yours truly!

Siriusly Fearless will be broadcasted LIVE on the @EnduranceZoneTV Facebook page free of charge, and will raise money for the @LLSusa and their mission to create a world without blood cancers.

​#cancelbloodcancer #goteam

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