3 Things Cancer Taught A Survivor, Caregiver & Couple

Katie and I were recently invited to participate in Texas Oncology Foundation’s Survive & Thrive webinar series. A few highlights include:

  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.

My CML Journey: A Timeline

Hi! We just wrapped up a video shoot for Takeda, the pharmaceutical company that makes my oral chemotherapy. I’ll get to that in a minute.

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 remarkable to visualize the history and recognize how far I’ve come. Everything changed after I made the decision to embrace cancer and seek opportunities through adversity. I talked about this a lot in the video shoot, and I hope I get to share it here once it has been edited. (It’s for an internal audience, so I’m not sure if they’ll allow it…but I’m going to ask!)

So much has happened since I started this blog. Technology has evolved, communication is different. Does anyone even read blogs anymore?

I stopped blogging after my clinical trial because it simply became too overwhelming to keep up with. Then, 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 sooo it’s going to be an ordeal to check), it became even more challenging to update it.

So I have no readers and no audience, but I wanted to leave this here anyway. Consider it an epitaph for a guy who hasn’t died. I just put a lot of work into this and well, I’m hoping 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

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

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

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

Revealing Sufficiency Amidst Hardships

During the past couple of days, I’ve had the opportunity to catch up with coworkers who likely visualized me on a death bed at MD Anderson. As difficult as it is (from a repetitive standpoint) to share the details of the past four months, the connection with others who’ve experienced similar trials, or are close to someone who has, makes it all worth it.

Yesterday, I talked to man in his mid-forties who shared a recently diagnosed heart condition. He walks with his wife every day, and was lucky enough to be diagnosed with an irregular heartbeat before it became fatal.

Like me, he is grateful. This is what I mean when I talk about my leukemia being a blessing. I’m thankful to have been inspired and grateful for another opportunity to encourage. Continue reading “Revealing Sufficiency Amidst Hardships”

Back To Work

Today is my first day back to work since I left to begin a clinical trial at MD Anderson on January 16th. 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.

Continue reading “Back To Work”

An Update on My Treatment: So Far, So Good

I’ve been on Ponatinib, a clinical trial drug that fights the t315i leukemia mutation I have, for one month so far. Before I began treatment, I was off of medication altogether for three weeks. The first test showed an abnormally high white blood cell count. To simplify things, this is how leukemia presents itself. After two weeks on my new medication, my counts normalized. To not bog anyone down with medical terminology, I pulled out what’s important and posted below. Continue reading “An Update on My Treatment: So Far, So Good”

The Grocery Checkout Donation Dilemma

There’s a grocery food chain called Tom Thumb on the other end of the block of my apartment complex. Until you live this close to a grocery store, you have no idea what convenience is. Should the milk ever run out mid-pour, I’m literally two minutes away from more. In fact, it takes longer to put on a more acceptable shirt and walk down to my truck than it does to get from my apartment complex to the sliding front doors.

Recently, Tom Thumb linked up with the Support for People with Disabilities fundraising campaign to benefit Easter Seals, Special Olympics and an array of organizations that help people with disabilities live fuller, more independent lives. At the end of each transaction, the cashier asks the customer if they’d like to donate money for the cause. On the customer transaction screen, there are donation options of $1, $5, $10 and $20. Any amount you donate is conveniently added to the total of the grocery amount. Continue reading “The Grocery Checkout Donation Dilemma”

The Perils of Building Endurance

When I was initially diagnosed with leukemia, I could barely walk up a flight of stairs. Once I reached the top, I would pant like I had just crossed the finish line at a death valley 100 mile ultra-marathon. I went to the doctor and discovered my white blood cell count was one hundred and twenty eight thousand. That’s 128,000 if you prefer to look at a number. Since normal is 4-11 thousand, I was definitely in a little trouble.

As my medicine started to work, so did my legs. I became more active and no longer panted like a dog trapped in a car on a 90 degree day. I committed to working out, alternating between the treadmill and stationary bike. Over time, the commitment paid off. Not only was I fifteen pounds lighter, I felt more energetic, I had a clearer head, and started feeling better about living a “normal” life. Continue reading “The Perils of Building Endurance”

TED Talks: The Power of Vulnerability – Brene Brown

I had a long talk with Katie yesterday about the writing process and the elusive struggle to align the cross hairs that make a blog post effective, meaningful and worthwhile. Writing is much more than putting something down on paper. Let me rephrase, good writing is much more than putting something down on paper. It’s hard work. My best blog posts exhaust my mind and leave me feeling like I couldn’t possibly etch out one more sentence. Afterward, there’s always the juxtaposition of reading what I’ve written and knowing I could have made it a lot more four-dimensional, tangible, relatable, fluid, more everything. Continue reading “TED Talks: The Power of Vulnerability – Brene Brown”

Significant Life Events: Rejection

When you look back at the life you’ve lived, it’s occasionally interesting to think of the three, four, five, etc., significant events you’ve experienced which have shaped your ideals, thoughts, esteem, and changed the trajectory of your beliefs or actions. All of these circumstances have been meaningful enough to set you on a path you might not have otherwise encountered. In this series of posts, I’ll embark on an interesting experiment to recall and recapture the feelings associated with some of the most significant life events that have either directly or indirectly shaped my worldview and the life I live today. My hope is that, through this, you’ll begin to rehash those significant moments in your own life and realize the impact those moments still have, further prompting you to explore the insight of your interactions with yourself and others.

“A single event can awaken within us a stranger totally unknown to us. To live is to be slowly born.” – Antoine de Saint-Exupery

MY FIRST SIGNIFICANT MEMORY OF REJECTION

When I was young, around the age of nine, I enjoyed going to the Boys and Girls club. Because I was often sidetracked by other activities during the school year, I didn’t get to go as often as I’d liked. The summer break, however, provided unlimited opportunities to explore untapped reservoirs of possibility. In other words, I had all the time in the world to do what I wanted to do.

A natural obstacle to the land of immeasurable fun proved to be the limited number of kids I knew who were members of this minimally exclusive club. As a result, my attendance to the Boys and Girls club was better defined as infrequent and sporadic. Every time I was invited, or had the opportunity to spend an afternoon up there with a friend, I would jump at the chance to go. Continue reading “Significant Life Events: Rejection”