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.
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”
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”
I have five blogs in draft form. I could publish them today, but for the past week I’ve wrestled with which direction I want to take my blog.
When I originally sought to step out and maintain my own website (wayyy back in 2003), my intention was to share anomalies like the horror of finding a plain M&M in a bag full of peanut M&Ms (which has since faded away into eternal obscurity).
I loved the creativity of capturing funny or observational humor for posterity without having to get on stage and tell jokes in front of actual living, breathing people staring back at me.
Although many of my friends enjoyed reading my posts, I didn’t harbor any ambition to pursue writing as a career. I was a sloppy writer.
And then there was CML.
When I was diagnosed with CML in January of 2006, I made a conscious decision to move forward with my life. I wanted to do what I had to do to overcome cancer and get back to my prior reality.
As I’ve documented, I struggled with seeing my treatment to completion, which was awfully consistent with the other avenues of my own disinterest.
When I began writing about my journey, I did so because I knew it would bring out the natural curiosity of those who may have struggled with many other of life’s difficulties.
I wanted to be honest, open, truthful about the path God had placed me on while similarly communicating an illness that many others, including myself, didn’t fully understand. I set out to encourage, provide hope, and bring to life a four-dimensional world few people ever get to see.
Throughout the process, I started paying attention. I payed attention to the things surrounding me, processed feelings more intentionally, and became more mindful of what I was writing down.
If it took me hours to finish a single post, I finished it. And then I read it over and over again (despite loathing the proofreading process). I became a better writer and communicator, but I was still eagerly anticipating a return to a life I once knew.
The response has been overwhelming. I’ve received a lot of positive feedback from those who’ve taken the time to read my blog.
Many have written and encouraged me to continue telling my story, while others have shared their own.
It’s been a blessing to have friends share the impact my story has had on their lives or the lives of someone they know. At a very small level, my goal of expressing the most vulnerable time of my life has been accomplished. I set out to be an encourager and people returned encouraged.
Now that the dust of a tumultuous season has settled, I’ve struggled with what to write about.
I’m an introvert at heart. Opening up my world isn’t easy. Stepping away from the climax of cancer treatment has left room to second guess my intent to keep talking about an experience that has brought indirect and direct attention to my story.
I’m sensitive to the possible misinterpretations one might have of thinking that I by the extension of my blog, is self-indulgent, or that I want this to be about me. It’s not, and it never has been.
When people tell me they’ve read my blog, I ask if my words are translating the way I want it to. It’s difficult to write about the struggles of things I can’t control.
There’s a fine line between an attempt to communicate the life I’m living and throwing together a novel of self-pity.
Outside of my blog, I’m at a point where I need to start thinking of ways for life to get back to normal. I’ve been blessed with the time-off of work I’ve needed for appointments, trips to Houston, and to manage the ups and downs of life within a clinical trial.
I’ll go back to work and school soon, and will need to carve out an unknown path littered with doctor’s appointments and lab visits. I’ve had to make a decision about whether it would beneficial for me to continue to think, read, and write about cancer or if I should focus on a life outside of it all.
Living a New Reality
For six years, I’ve walked the thin line of leukemia. There have been some ups, downs, but most of my experience has resided somewhere in the middle.
I’ve fought for six years against a “new reality.” I wanted to return to a life free of cancer, far from the unpredictable, safe in the arms of an all-forgiving youth.
Like Babe Ruth in the fifth inning of game 3 of the 1932 World Series, I wanted to point to center field and call my shot; I wanted to be somebody who merely talked about having overcome cancer instead of living it.
Two months ago, when I learned the minor vision impairment in my right eye was likely permanent, I realized I wasn’t Babe Ruth. The effects of fighting a physical battle within my body had produced its first casualty, and all I had to do was open my eyes to understand a new reality. Even if I want to return to a carefree world, the affliction of a protocol called DCC-2036 has left its mark.
I’ve shared all of this with Katie. I’ve shared my fleeting desire to get involved with the world of cancer one minute, while fighting the reservation and fear of embracing a new reality the next.
Much like a student walking onto an intimidating, exclusive college campus for the second or third time, I’ve been reluctant to stay long enough to find my voice.
She’s reminded me of the natural tools and abilities I’ve been given to make a difference in the world of somebody who’s experiencing an equally challenging period of their lives. She says I’m too humble, and that I don’t give myself enough credit for the way I make people feel.
Then it hit me. If I stop sharing my story, my fears will come true. If I allow myself the opportunity to use my story, mishaps, strengths, and gifts God has given me for the cause of cancer, then I may impact, or even save, at least one person’s life.
To care about other people is to press on and press in, to get involved and impact lives. The best thing I can do is embrace a movement to empower, encourage, and give hope to those living with cancer or any of life’s challenges. Instead of using my energy to outrun my circumstances, I want to embrace all that has led me to where I am today.
So that’s what I will do. I’ve realized the books marked three quarters of the way to the end are the ones I still have to finish. My story just so happens to be one of them.
I’m going to continue to write about all kinds of things, but cancer will still be one of them. I never intended for this to be a cancer blog, I just wanted to share my personal experiences.
Now, my vision is to make it a blog of hope, humor, and inspiration. If my story happens to be a part of making that happen, then it was never really about me to begin with.
“2 Consider it pure joy, my brothers and sisters,[a] whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything.” (James 1:2-4)
“Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don’t try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way.” (James 1:2-4 MSG)
*This is the long, unedited version of yesterday’s blog post for MD Anderson’s Cancerwise blog
In January of 2006, I was diagnosed with Chronic Myeloid Leukemia (CML). I never would have imagined that I’d be a twenty-four year old living with cancer.
CML is, well, chronic. When you first learn to manage a chronic disease, you realize that it’s not always the medical side of things that’s burdensome. It’s often the unexpected cost of managing a chronic illness that can become a toll.
You won’t read that in the doctor’s notes. That’s just something I had to learn the hard way.
Nobody ever tells you how difficult it will be to manage a chronic illness after you’re first diagnosed. As a naive-to-the-world twenty-four year old I was no exception.
“That will be $125.” Picking up prescriptions was always a guessing game. I never knew how insurance worked. All I knew was that I had it.
“That seems like a lot of money,” I replied. “The original cost of the medicine, without insurance, is $3,400,” she responded. “Dollars?” I asked.
I handed over my debit card as fast as I could.
I was taking Gleevec, 400 mg daily. One pill a day. “Easy enough,” I thought. In fact, it was easy, for the first seven to eight months. Then I began to compromise. I had to.
It became easier to pay for my medication every third paycheck as opposed to every second. Over time, I felt ashamed, guilty, and embarrassed that I wasn’t taking medication every day, but I was pretty broke and well, young and dumb.
For the most part, stretching one month of medication into two months worked well for me. Physically, I felt good. In fact, I’d often forget that I had leukemia altogether.
Like my friends, I wanted to be young, carefree and not have to worry about managing an chronic illness. Naturally, I often pushed my diagnosis to the side.
Instead of being deathly afraid of what could happen if I didn’t manage my illness correctly, I became deathly afraid of what could happen if I managed my illness correctly but never experienced the fullness of my youth. I was somehow too immature, naive, or a combination of both to realize that I needed to figure out a way to manage both.
But they don’t give you that playbook when you walk out of the doctor’s office.
The longer I stretched out my medicine, the less guilty I became. After all, blood tests and routine checkups continued to reveal that, at least at a very superficial level, I was “normal.” I didn’t understand that at a very cellular level, the inconsistency was enabling the leukemia cells to evolve.
I started to base my illness on how I felt physically, as opposed to how everything was measuring up scientifically. I embraced the invincibility that provided more financial flexibility.
Living two or three weeks without medicine was not uncommon. My mind had betrayed my body, and my body would soon betray my mind.
In August of 2008, I moved to Dallas, Texas for a promotion. Soon after I started feeling physical symptoms of CML, I searched for a new oncologist. It had been months since I had taken any medication.
I contacted my oncologist’s office and informed them that I had moved. I asked the nurse if she could find a provider in my area. She said she’d call me back as soon as she found a doctor. She called back two days later.
“We’re having some trouble finding an oncologist,” she said. “We’ve been in contact with a couple of places but they won’t accept you as a patient because of your history of non-adherence. I’ll keep trying!”
I had no idea that I could even be refused as a patient. I also had no idea that I was considered “non-adherent.”
Sure, I had missed a couple of medical appointments. And yes, I spent an afternoon in the emergency room as a result of not taking my medication. But it was never a case of having medicine and not taking it. Instead, it was a matter of not being able to afford it in the first place.
My world was turned upside down. After years of fighting hard to be “normal,” I was anything but. I was labeled. Not only did I have leukemia, my medical chart carried a stigma. I was non-adherent.
A few days after being rejected, I was accepted by Southwestern Medical Center in Dallas. It was there that I faced the realities of my illness and coordinated plans to talk with the social worker about how I could receive the financial help that I needed. It was a big step in the right direction.
I felt empowered to be my own advocate and had to accept all of my previous mistakes. All it took was a little assistance.
It wasn’t until my time at UT Southwestern that I truly understood the significance of patient adherence, particularly with young adults. I wish I had known all along.
It may have cured the false belief that I was controlling my situation when, in fact, I wasn’t. Now, I can’t help to wonder if my adherence mistakes lead to the discovery of a t315i mutation within my cells. That mutation prevent all known FDA-approved medications from binding to leukemia cells.
Perhaps I’ll never know.
What I do know is that there’s no greater issue to tackle in the field of medicine than patient adherence. As a chronic patient, I understand the struggles of having good intentions without the proper game plan to carry them forward.
Trying to navigate cancer on your own is like walking into the gym and trying to lift a weight you’ve never lifted before just to impress the prettiest girl in the room. Without a spotter or someone to help you lift the weight, it will soon come crashing down on you.
Nobody is capable of lifting the weight of cancer on their own.
If things work out for me, I won’t be back to MD Anderson for another three months. That’s the first marker in a long line of check points I’ll face moving forward. For patients with chronic forms of leukemia, it’s often not a sprint, but a marathon.
With all of the drama of the past couple of months, my visit yesterday was like skipping dinner and walking straight into a Ben & Jerry’s. Ice cream for dinner, I’ll take it every time. There were no biopsies, bad news, or premature revelations. It was simply an appointment to pick up my new trial medication and a follow-up with Dr. Ciurea, my stem cell doctor. Continue reading “A Brand New Day”
Today is the first day of the rest of your life.
I’ve always thought that was a clever quote, for somebody else.
For years, today has always been an extension of yesterday, which started on Monday, the day that I had to go back to work or school. If I am to be honest, I never saw it as anything more than that. Today that quote defines my heart.
I received an email from Alexa on Tuesday. She told me that insurance has approved the cost of care for the clinical trial drug called Ponatinib. Katie and I are scheduled to go back to Houston today so that I can meet with Dr. Cortes in the morning and begin my new treatment. I’m excited, but snake bitten. Although 75% of patients with CML (who have the t315i mutation) have responded really well to this new drug, I’m fully aware of how unpredictable trial medicine can be. If I ever forget, all I have to do is open my eyes. Continue reading “Back to Houston”
It’s been over a month since I have taken any medication. It’s been a month of ups, downs, and a lot of waiting. In fact, I’m still waiting, but that’s okay. Recently, waiting has been a blessing in disguise. I needed the break, I was desperate for life to be normal again.
Looking back, I’ve been through a gauntlet. Weekly appointments and bad news, all while away from home, was tough on not just me, but for Katie as well. For two months, we had a constant conversation about my eyesight, Dr.’s appointments, Ponatinib vs. transplant, and how we could make the best of it all. Like a weathered flag that that flies high on a windy plain, my edges were beginning to fray. I’m thankful that we’ve had the ability to regroup. Continue reading “An Expression of Gratitude”
*The following post is hosted at MD Anderson’s blog, Cancerwise.org. Here is the long, unedited version. Thank you for your support!*
Two weeks ago, I sat in a coffee shop and stared at a blinking cursor on a blank screen. The cafe was filled with noisy conversation, a non-ambient soundtrack, and customers who yelled orders over obnoxious blenders. I kept wishing things would be different, fantasizing about conversation levels dying down, and hoping that people would finally get the memo that coffee is not meant to be mixed with ice. I sat defeated when I realized that none of those things would ever come true.
After a few minutes, I suddenly remembered that my backpack was at the foot of the table. As quickly as I could, I reached for my headphones and put them over my ears. Everything that I had been hoping for was finally coming true. Ambient music flooded my senses and the world around me had become mute. The jackhammer that was apparently used to crush ice was extinguished and I no longer felt as if I was in a restless place with infinite drink combinations. I had finally found my comfort zone. Continue reading “Life Through Headphones”
“The mind of man plans his way, but the Lord directs his steps.” – Proverbs 16:9
I’ve confused myself by this verse in the past. I read it correctly, but my mind always wants to put my name in the second half of this sentence. Something about “…but Justin directs his steps” sounds a lot better and translates a lot easier than if I were to merely allow God to be in control. A life outside of this always leads me to frustration, discontent, and unhappiness, but I try to make it work anyway, daily forgetting the consequences. I’m thankful that I’m given grace every day.
I’m still learning. Continue reading “Time in the Valley”