1. Why cameramen were shooting video behind us. *Spoiler alert* Real Housewives of Cancer.
2. Why communicating cancer doesn’t seem so bad when the alternative is being married with children.
3. The three things we learned as a survivor, caregiver and couple who are living with chronic cancer.

Prior to the shoot, the production company asked if I could send them a timeline of my CML journey. I started working on it, pulling together the different pieces of my story. It is below.

I wanted to publish it here for a couple of reasons.

1. It was living in Google Drive, not doing anyone any good.
2. I wanted to provide people with easy access to my CML story.
3. Over the past two days, I’ve been inspired with a few ideas, and I’m going to work on rebooting this blog.

Anyway, it was crazy to visualize how far Katie and I have come.

Everything changed after I made the decision to embrace cancer and seek opportunities through adversity. 

So much has happened since I started this blog. Technology has evolved, communication is different.

When I lost all of this blog’s content (I think it’s backed up on an old computer, but the monitor doesn’t work so I need to figure that out), it became overwhelming to update it and life got away from me.

Anyway, I’m going to leave this here. I hope it helps someone.

*January 2006 – Diagnosed with CML (Gleevec)

Early 2007 – Met Katie (became friends)

July 2009 – Katie and I started dating

December 2009 – Moved to Dallas

*January 2010 – Started going to UT Southwestern (Dr. Robert Collins, Gleevec)

*July 2010 – t315i mutation detected (UT Southwestern)

*October 2010 – Started going to MD Anderson. Candidate for Inclusig trial, but no t315i mutation detected during second test (MD Anderson)

*November 2010 – Started second line TKI (Sprycel)

March 2011 – Participated on Bristol Myers Squibb patient advisory board (First time to meet a CML survivor in person)

*November 2011 – t315i mutation detected (MD Anderson, Inclusig trial was closed to new patients)

January 2012 – Katie and I got engaged!

*February 2012 – Enrolled in first clinical trial

*February 2012 – Experienced toxic side effects and stopped first trial

February 2012 – Started writing for MD Anderson’s Cancerwise Blog

March 2012 – Published “Life Through Headphones” on cancerwise.org

April 2012 – Katie moved to Dallas

April 2012 – Published “Unmasking a History of Non-Compliance” on cancerwise.org

May 2012 – Published “What cancer has taught me: emotional health begins with communication” on Cancerwise.org

*March 2012 – Started closed phase 3 Ponatinib (Iclusig) trial via compassionate use

May 2012 – Published “What cancer has taught me: life is a marathon” on cancerwise.org

May 2012 – Became DFW advocate for National CML Society

*July 2012 – Reached Complete Cytogenic Response

August 2012 – Published “The fruit of leukemia: Life-changing perspectives” on cancerwise.org

August 2012 – Katie and Justin got involved with local young adult cancer advocacy

September 2012 – Published “Discovering the nature of hope” on cancerwise.org

*October 2012 – Reached Major Molecular Response

October 2012 – Published “Chronic myeloid leukemia survivor: Life after the finish line” on cancerwise.org

November 2012 – Katie and participate in ARIAD marketing photo shoot

December 2012 – Katie published “Cancer caregivers: “Do what you can do and that’s all you can do …” on cancerwise.org

January 2013 – Published “Getting married after cancer: Guilt is part of the diagnosis” on cancerwise.org

March 2013 – Feature story “Training for a race is well within Justin Ozuna’s control — unlike leukemia” in the Dallas Morning News

Summer 2013: Story published “The Treatment: Improving on Success” in MD Anderson’s Conquest Magazine

May 2013 – Joined Critical Mass: Young Adult Cancer Coalition as social media manager

October 2013 – Katie and I got married! Link to photos

October 2014 – Katie joins Sarah Cannon as an Oncology Survivorship Navigator and Psychosocial Coordinator

December 2014 – Participated in ARIAD patient focus group

March 2015 – Presented at ARIAD National Sales Meeting

March 2015 – Participated in ARIAD Virtual Ad Board

November 2015 – Became Director of Communications at Fort Worth Adolescent and Young Adult Oncology Coalition

*October 2015 – Started back at UT Southwestern (Dr. Robert Collins, Iclusig)

May 2016 – Finally graduated college! (Emerging Media and Communications) // Feature story “Cancer survivor graduates from UT Dallas” on WFAA Channel 8

August 2016 – Launched Metamedia Creative Co., a digital marketing agency

December 2019 – Katie and I were featured in a short news story in my hometown. 

Promises I couldn’t make
Despite our excitement, however, I still struggled with feelings of guilt. Unlike most guys my age, I couldn’t promise Katie the illusion of a comfortable and secure life.

I couldn’t promise that we’d avoid adversity or that I’d be by her side on my 90th birthday. I could only promise that I’d do my best to hold her hand as we navigated through my often uncertain reality.

I spent the first part of my diagnosis pushing those feelings aside, never acknowledging that my situation was different from those of my peers.

Guilt is easy to ignore when cancer doesn’t directly affect the lives of those intimately connected to you. That’s why it’s easy to push people away, to not let anyone get close to you, to give in to the temptation to isolate yourself from the world.

Guilt is always best served in isolation.

Although I knew Katie was emotionally invested in our relationship, the significance of an engagement and eventual marriage meant that every result from every piece of bone marrow taken from my body moving forward would be reflected in every tear of sadness or joy that falls down her cheek. In an irrational way, I feel responsible for that.

When I sought the engagement blessing of Katie’s father, I did my best to acknowledge this awareness and assure him that I’d honor his little girl in a way that goes beyond life and all of its misfortune.

Even though I’ve overcome so much hardship at such a young age, it’s sometimes difficult not to feel inadequate. It was all I could do to assure us both that I’d never give up our happiness for an illness I couldn’t control.

Harsh realities of cancer
Soon after our engagement, I began a clinical trial at MD Anderson. I didn’t think much about how the trial could impact our new life because I’d never before experienced significant side effects from my medications.

However, I quickly learned that I’d underestimated the potential consequences of physical adversity.

The trial failed. Soon after, we met with a stem cell transplant doctor to discuss the a bone marrow transplant. This wasn’t how I envisioned everything would turn out.

Welcome to the world of cancer.

As rewarding as it was to know that I would spend the rest of my life with my best friend, I felt guilty for not knowing how long the rest of my life would be.

The thought of introducing Katie to unfamiliar emotions that no young adult should be asked to experience made me feel selfish.

In the same way that cancer corrupts the production of cells, the mind is constantly faced with deception. It’s often difficult to distinguish between false feelings and reality.

“Is this my fault?” I often asked myself.

When treatment after a cancer diagnosis goes well, we’re encouraged to live a normal life.

But when that pursuit is disrupted by a questionable blood test or scan, it’s as if the normal life you tried to live was merely the fishnet used to expose a new set of people to the harsh realities of the cancer world. It’s no wonder that some people never try to live a normal life at all.

Our new normal
Katie and I often talk to each other about our feelings and try to process what we’re each going through, and that goes a long way. But guilt is a tricky emotion that is often hard to reach.

We have to stay on top of it and constantly reassure each other that negative feelings are distortions of a deeper love and security. Throughout my seven years battling leukemia, I learned that guilt is a part of the diagnosis.

Katie and I will get married in October of this year. I’ve reached a complete molecular remission, and I know, for now, that the prognosis for a normal, healthy life is somewhat good. But it’s sometimes difficult to know that landmines exist in our household.

This is our new normal. Every day that I wake up, I realize I am the luckiest person in the world, first because I have my health, and second, because Katie chose to be with me when she didn’t have to.

This blog was written and shared on MD Anderson’s Cancerwise blog. You can view it here.

Broken dreams
I was enrolled in a clinical trial designed to combat a mutation that prevented all FDA-approved medication from working. What I originally believed to be a migraine headache was actually a toxic response to the trial drug.

My vision was cloudy and blurry for days. Clinically, my optic nerves were swollen, with no guarantee that I’d ever experience 20/20 vision again.

As seconds converted to a lifetime of memories, my brain did all of the talking. Like a pre-packaged movie, my thoughts projected an altered life of shattered dreams.

I flashed forward to the blurred vision of a child anxiously anticipating whether the baseball he’d just thrown would reach his father’s glove. I saw an unrecognizable life with countless struggles and limited solutions.

My thoughts displayed a trailer for a dramatic documentary about the perils of antagonistic concessions and lost hope.

I imagine that those visions of a lost or altered future are recorded at birth, cued to play at the convergence of bad news. I recently heard a newly diagnosed leukemia patient explore her fears of broken dreams.

Through her words, she projected that it wasn’t the diagnosis itself that delivered the weight of heavy emotions, it was the thought of not fulfilling the visions she always imagined that was the cancer’s venom.

Hope is organic
The good news is that the human spirit is programmed to guard against cancer-producing fears. Hope has created an imaginary buffer zone between our physical state of being and the dreams that we hold closest to our hearts.

It’s not until the diagnosis begins to invade the latter that the effects of chemotherapy really start to take their toll.

Hope is one of the most powerful four-letter words in the world. Whether we hope for a good prognosis, a life free of heartache, or to experience true, unconditional love, one thing remains the same — hope is organic.

Every human being is predisposed to a resilient belief that, one day, the visions of their heart will be reconciled with reality. Hope is not something we acquire, like the complexities of language or human interaction. It’s interwoven into the fabric of our DNA.

When my brain slowed down and the hope of fulfilling the life I had always wanted resurfaced, I stumbled through a gauntlet of words, hoping that I’d somehow be able to translate an accurate disposition.

I was terrified of a new reality, but my mind latched onto optimism like a transient to a train destined for the land of possibility, where hope shines like the beauty of a sunrise.

My vision improved as the intraocular swelling subsided. If I’m lucky, I’ll one day fulfill a simple dream of playing catch with my children like I did with my father. I’ll get to enjoy the vibrant colors and nuances of the world the way they were created. More importantly, I’ll always have the hope to bridge the gaps.

Aristotle once said, “Hope is the dream of a waking man.” As long as hope is alive, our dreams are alive. As long as our dreams are alive, we are alive. And as long as we are alive, we are victorious over cancer. No diagnosis has the power, in and of itself, to ever take that away.

Note: I originally wrote and shared this blog on MD Anderson’s Cancerwise.org. You can view it here.

I’ve fought leukemia in one way or another for the past six years. For the first four, I pushed my diagnosis aside in an effort to be carefree, and enjoy the freedoms available to those who don’t have cancer. I walked away.

I made a mistake.

Back then, my diagnosis represented a dark place. It symbolized heartache, frustration and futility, emotions that don’t constitute a life worth embracing. The thought of filtering out so many negative emotions was overwhelming. I tried to fix the uncontrollable instead of focusing on what I could control in my life.

That approach made me second-guess a lot of what I thought I should be. Why couldn’t I be “normal”? Why couldn’t I have it easy? Why didn’t I know someone else who went through the same experiences?

My life changed when I was refused as a patient ata hospital in Dallas. That rejection initiated feelings I had never experienced, emotions that exposed my displaced attitude and the error of my approach. It was the best thing that could have happened to me. After sitting in a cold, lonely apartment that winter, I made the decision to embrace my illness. I wanted a new approach, to start from scratch. I made the commitment to understand complex emotions, grow as a human being, and push myself through the realities of cancer that I hadn’t truly experienced.

A perspective of gratitude
I showed up to my first appointment at MD Anderson with an immeasurable depth of gratitude. I no longer saw myself as an outsider. I was an imperfect human being who was recommitted to the second chance I had been given.

I knew that through the filter of gratitude, I’d be given every opportunity to see life from perspectives I had never experienced. I couldn’t have been more accurate.

I learned that in the core of our being, we have a heart designed to be grateful. When we ignore the structure of our design, we open ourselves up to bitterness, hopelessness and remorse. I’m thankful to be alive, I’m thankful to write this sentence. The rest of life begins here.

Growing in empathy
Through the lens of gratitude, I began to better understand empathy. A waiting room was no longer a necessary evil, it was an opportunity to appreciate my journey and how far I had come.

Being around others with similar illnesses is a unique opportunity to identify with patients who are fighting the same battles and share the same hope. We’re all in it together, tied together by a common bond, asked to endure a diagnosis we would have otherwise said we couldn’t handle.

It took four years for me to realize that my desire to emotionally separate from my journey was to isolate myself and to fail in using my gifts and abilities to encourage and inspire others.

My leukemia isn’t merely about me, it’s also about you or someone you love. Every appointment I attend, question I ask, heart-dropping experience I have resurfaces when I’m able to sever another’s hopelessness at the root. Without empathy, none of this is possible.

Living a life of purpose
Embracing my leukemia also reminded me of my purpose. Life isn’t about unending moments of fulfillment, it’s about growing, learning, loving and appreciating the in-between.

To live with purpose means to ask the question “why” instead of “why not.” It allowed me the rare opportunity to better understand complex emotions. I understand empathy, love, compassion and feelings of hopelessness a lot better. To have ignored the process would have been a fatal blow to the person I’ve always wanted to become.

In sports, the purpose of practice is to be ready and prepared to fulfill your role in the games. My purpose on earth is to be ready and prepared to fulfill my role in heaven. Without experiencing the lows, how can I ever genuinely appreciate the highs?

Experiencing joy
Growing in gratitude and empathy and living a life of purpose meant that, by default, I would also grow in joy. Nourishing proper perspectives gave light to an illness that once symbolized darkness.

Although my journey has had its ups and downs, my joy has remained. And why shouldn’t it? I’ve been given endless reasons to celebrate milestones I might have previously viewed as mundane. I consider myself lucky.

Life is precious and grand. The past two years have been the most difficult, challenging, rewarding, most exciting years of my life. I used to ask why my circumstances weren’t different. Today, in light of all the uncertainty, I’ve replaced questions with a deep appreciation. Gratitude, empathy, purpose, and joy — there’s no greater prognosis. 

Meanwhile, I wasn’t aware that I didn’t know how to tangibly handle the pressures of leukemia on my own. Until this point, I had not been billed for a doctor’s visit nor had I picked up a prescription that cost more than $20. Like a person staring at a long hallway with many unknown doors, my only long-term plan was to do what I could in the short-term — experience everything and make a lot of mistakes.

Just as the wheels in my life began to shake, my family had a sense of peace again. Because I wanted to guard them against the long and frustrating tentacles of uncertainty, I didn’t share my concerns with them.

I felt like protecting my family from the hardships of cancer was the only thing I could control. The weight of seeing them upset outweighed the challenges I was sure I’d one day overcome. I mistook strength for preservation and began to subconsciously cut myself off from the only real support I had.

As life continued, I occasionally struggled to afford my medication, but I never asked for help.

Emotionally, I couldn’t discern between the normal feelings of being a mid-20s male and those of being a mid-20s male living with cancer. Because I didn’t know anyone who had been through the same experiences, I never talked about it.

Consequently, I developed a bad habit of living as if I didn’t have cancer, and dealt with problems as they arrived.

It became a vicious cycle.

Slowly, but surely, leukemia once again wrapped itself around me like a ravenous boa constrictor. Every misstep encouraged a tighter grip; every doubt fostered a selfish solution. And yet, I continued to stay silent.

Loosening the stranglehold
Three years into my diagnosis, I began dating Katie, who’s now my fiancée. By default, she took an interest in both my physical and emotional world.

She could see the heaviness of my diagnosis and was objective in her approach to expose the distance I had placed between me and everyone else. Lovingly, she began to dissolve the illogical illusion that led me to believe protection and strength could coexist in the world of cancer.

Katie helped me realize that I was doing more harm than good.

Somehow, I believed I could be everything to everyone without allowing for the possibility that they could be the same for me. I realized that the behavior I perceived as noble was better defined as futility.

Soon after, the constrictor that had begun to suffocate me loosened its stranglehold. I committed to vulnerability and acknowledged that cancer didn’t initiate super human abilities within me.

It wasn’t my job to protect the hearts of those around me, it was my job to stay emotionally healthy. No longer was I deceived by the belief that cancer can be defeated from the outside in. I knew I had to attack it from the inside out. When I accepted this, I began to feel a sense of freedom.

Being able to talk openly about my frustrations with cancer has exposed me to an entirely different world I didn’t know existed.

It has drawn out my strengths, inspired others who deal with different hardships, and has allowed me to participate in a more meaningful dialogue about the difficulties of being young and living with cancer.

I no longer waste energy trying to shepherd the uncontrollable. Instead, I use those efforts to enjoy the things I can control: faith, love, joy, empathy and gratefulness.

A new peak leads the way for a new valley
As renewed as my efforts were, six months later I was told my bone marrow began releasing immature white blood cells back into my bloodstream again. Sprycel was no longer working. Another mutation test revealed an obvious t315i mutation diagnosis. There was no reason to second guess anymore. I found that no amount of optimism could buffer unpredictability.

Soon after, I began a clinical trial at MD Anderson. Two weeks into the protocol, the trial drug caused an increase in eye pressure, which eventually led to partial vision impairment in my right eye. My oncologist removed me from the trial and applied for compassionate use of the t315i effective drug, Ponatinib, a clinical trial that was closed to new patients at the time I arrived in Houston. Ponatinib is my last hope to avoid a bone marrow transplant.

Dedication to finish
Fred Lebow, New York City Marathon co-founder once said, “The marathon is a charismatic event. It has everything. It has drama. It has competition. It has camaraderie. It has heroism. Every jogger can’t dream of being an Olympic champion, but he can dream of finishing a marathon.”

The same could be said about our fight with cancer.

Instead of winning, we simply hope to overcome. Instead of finishing, we yearn to see our children and grandchildren grow up. The aspiration to live long, inspired, productive lives supplants heroism.

I wasn’t always sure if a long life was possible for me. Much like my race in junior high, I was focused on the short term, on catching up with everyone else. Had I continued to run my race against cancer in the same way, I might not have finished at all.

When life kept slipping away and bad news lingered, I learned to see the big picture, to not allow bad news to crush me and to fully appreciate the life I live. Everything stopped becoming so immediate. The world slowed down and the clarity of truth and importance were made known.

Life isn’t a sprint, it’s a marathon. I had to learn that the hard way. Now, I can fight my cancer with grace, perseverance and a dedication to cross the finish line.

Note: I originally wrote and shared this blog on MD Anderson’s Cancerwise.org. You can view it here.

Repeating the details of the past four months has been mentally exhausting, but to connect with others who have experienced similar trials has been refreshing.

Yesterday, I talked to man in his mid-forties about his recently diagnosed heart condition. He was diagnosed with an irregular heartbeat before it became fatal.

We talked about the other issues that are sometimes more difficult to manage, things like the cost of insurance, trying to balance work and doctor appointments and the difficulty of defining life’s gray areas.

As a contracted employee, he said that his wife’s insurance is really the only viable option they have to continue his treatment.

Sadly, his wife is scheduled to be laid off at the end of next week. They will lose a second income and the insurance they rely on. What a difficult situation to be in.

It inspired me.

He referenced Paul’s conversation with God about removing the thorn from his flesh – to remove the life’s hardships. God’s reply? “My grace is sufficient for you, for power is perfected in weakness.”*

It is a verse I’ve relied on heavily the past few months, one that flips everything about this world on its head.

My grace is sufficient.

Wow.

One definition of grace is “elegance or beauty of form, manner, motion, or action.” We don’t often think of things in those terms. Usually, we stress over life’s unknowns, the unpredictable and “what could be.” When facing uncertainty, tomorrow can make us anxious.

And yet, God refers to our circumstances as beautiful, free-flowing opportunities to see His work in our lives. The burdens we encounter are inconsequential to the fulfillment of His promises to us.

“My grace is sufficient.”

I left inspired. It reminded me that we’re all connected in one way or another. We all face hardships.

When adversity arrives, remember that we can find contentment through the grace God continues to show us, even when we’re not paying attention.

Take a second to feel your pulse. Witness your chest rise and fall as you subconsciously inhale and exhale. Think about the eyes you’re using to connect with me and this blog post. Truly realize that you’re alive today.

“My grace is sufficient.”

*2 Corinthians 12:9

To summarize the past three and a half months, I experienced an increase in toxicity during the first trial for a t315i leukemia mutation, fought through muscle weakness and nausea, lost some of my vision, began blogging for MD Anderson, and was accepted as a compassionate care patient for a promising drug called Ponatinib.

It wasn’t quite the kind of vacation I wanted, but I may look back on this period and say it was the best thing to ever happened to me.

It’s hard to imagine that Katie and I have been through so much. The storm has definitely passed and a new chapter of our lives will soon begin.

I’ll attend the same job as before, but everything will be new. It will be challenging to try to get back into the swing of life. I’m tempted to believe this is the hardest part of the journey, but I know better.

I’ve been anxious to return to work for a while. I’m afraid to fall into a routine again, to work an 8-10 hour day, five days a week, and be reminded of what it’s like for life to be normal again. I fear normal.

No, that’s not strong enough. I dread normal.When all of these events were happening, I wanted to go back to normal. I didn’t want to endure the hardships of fighting a disease on a daily basis. It’s crazy how hardship changes things.

While I’ve been off of work, I rediscovered my passion for writing and helping others. I decided to make a commitment to accept all that I’ve been through and to embrace a new reality. I want to impact lives, encourage people, and be a part of something bigger than myself.

The aim of my blog is to make that happen, but I want to contribute so much more. It’s tough to think of work as “getting in the way” but I know I have to be patient.

The month I spent at MD Anderson showed me a life of purpose. It inspired me to really do something with my gifts instead of simply existing and working a dead-end job. I don’t know how I’ll do that, but I feel like everything I’ve endured (and will continue to experience) is a time of preparation. I’ll do my best to continue to grow as a person and learn as much as I can, so that when the dream is finally clear, I’ll be ready to catch it.

Thank you for experiencing the past few months with me. Thank you for your support, prayers, hope, encouragement, love, and everything else that made life that much easier on Katie and me. I’ll never forget the kindness that has been shown to us. I needed that more than you could ever imagine. Now, I’ll carry those words into the future and provide someone else the hope and optimism you once presented me.

A return to life begins in 5..4..3..2..1..

3/22/12

White Blood Cells 19.2K/UL – Normal (4.0-11.0)
Red Blood Cells 4.67 – Normal (4.0-6.0)
Platelet Count 198 – Normal (140-440)

4/5/12

White Blood Cells 9.9K/UL – Normal (4.0-11.0)
Red Blood Cells 4.54 – Normal (4.0-6.0)
Platelet Count 173 – Normal (140-440)

4/19/12

White Blood Cells 5.4K/UL – Normal (4.0-11.0)
Red Blood Cells 4.90 – Normal (4.0-6.0)
Platelet Count 151 – Normal (140-440)

So far, my medication is working with little to no side effects. A truer marker of how well it’s working will be determined at the 3 and 6 month mark, when the liquid from my bone marrow is examined to see if the baby white blood cells are forming normally, to fight disease. If I catch them napping, or breakdancing, then ooooh don’t get me started.

Another thing they’ll keep an eye on is my platelet count and liver enzymes. This medicine can sometimes cause a spike in enzymes, which can lead to pancreatitis. I’m obviously hoping to avoid that. Otherwise, there will be another break in treatment as they lower the dosage.

From a progression and treatment standpoint, it’s a slow, enduring process. As impatient as I can sometimes be, I’m very thankful for that.I’ve learned to slow things down, to not try to control the uncontrollable.

Thank you for your prayers. I can’t say with certainty that everything will be amazing, but I’ll celebrate the small victories with a grateful heart. God is good, regardless of the circumstances I encounter.

I’ll go in for my last blood test Thursday, 5/3. After that, I won’t have another until I visit MD Anderson at the end of June. It’s wild to think that my journey has brought me to this place, but I’m ready to move forward with life.