Thank You

I know that I have been saying this a lot lately, but I want to say thank you. It seems so simple to say and it’s probably even simpler to hear, but my gratitude has extended far beyond that. I’ve been humbled by those willing to take time to pray for me and my family, for the verbal support you have provided me, and the thoughts sent our way.

It makes a difference. It will always make a difference.

MDAnderson

My initial visit to M.D. Anderson is in the books. It was a two day event.

I don’t have as many answers as I’d like to have at this point, but I think my family is feeling optimistic about the possibilities of progress.

The first day consisted of meetings with liaisons, nurses, insurance people, blood draws, and the dreaded bone marrow biopsy.

I was disappointed that I had another biopsy since I had one just a month and a half ago, but I guess they just wanted to get their own opinion. And they needed to see where things stand.

The second day consisted simply of a meeting with the doctor. Easy enough. No poking, prodding, or any of the things that I’ve grown to associate with these kinds of trips.

My mom made the trip down from Wichita Falls in support. I’m glad that she came. Katie, residing in San Antonio, met us in Houston. I was thankful to have her there. I know my dad wanted to be there, but he took a job as an aerospace welder for the air force and is in the process of being deployed overseas.

All of that made being in Houston a lot easier. Naturally. I’m thankful for this life that I have and the people in it. I don’t know how anyone can live without a loving support system.

For the sake of time, I’ll communicate what I learned. I have a gene mutation called t315i. My doctor described the cell mutation as a change in one of the receptors allows medication to bind to it, which then prevents the formation of abnormal white blood cells.

Here’s a layman’s illustration.

Picture a baseball glove as a protein receptor. Gleevec, my former oral chemotherapy, happens to be a softball. When a cell mutates, it’s the equivalent of a small protrusion in the webbing of the glove.

In this example, a second generation drug can still be caught, much like switching from a softball to a smaller baseball. The t315i gene mutation, however, is like having numerous protrusions in the webbing of the glove. Not even a baseball can be caught.

My oncologist says they also call this mutation “the gatekeeper” for that exact reason. It’s not even worth trying. No known FDA-approved medications work. That’s why I’m at MD Anderson.

At this point, I still don’t know what kind of treatment I’ll endure. They sent off for another test to confirm that I do, in fact, have the gene mutation UT Southwestern told me I have.

Once that information comes back, they’ll look at the results of all of the tests and see where I currently stand. Then, my oncologist will formulate a game plan.

I do know that I’ll enroll in a clinical trial. My doctor said there are a couple to choose from and that he wants to put me on the one that has shown the most positive response in patients with drug resistant leukemia.

I’m lucky that a new trial will start in a month. If I’m not a candidate for that trial, he said there is a second trial available, but that I would have to spend a month in Houston while receiving treatment. I’m hoping the first option works out.¬†Typically, a clinical trial lasts for six months.

As much as I know about my next steps, I still feel like I don’t know anything. That’s a little frustrating. But I’m thankful. I’ve remained thankful. My prayer has been that this process increases my gratitude, so that “in all things, I give thanks”.

If you’re reading this, thank you for your support, encouragement, prayers, words of hope and inspiration.

I remember talking to a friend whose father recently learned of his diagnosis of lymphoma. I told her to embrace the experience, whether it be bad or good, hard or easy, to just be present.

In this moment, I’m living the experience. My goal is to share that experience in this blog.

Thank you.

The process of vulnerability

The most difficult part of a cancer diagnosis is attempting to manage all of the stress and anxiety that comes with it while doing your absolute best to not allow it to bleed over into the life that you really want to live. Compartmentalization is your ally, but a really elusive thing sometimes. If it was a friend, it would be the kind that calls you back only on occasion or texts you while you’re asleep, and the next week is early to lunch and even offers to pick you up to save money on gas. It’s very inconsistent.

If I were painting on a canvas, compartmentalizing my Leukemia and the life that I live would look similar to the solar system, with the sun being my life apart from my illness and the earth being my diagnosis and the things that I’ve had to endure through that. I’ve made every effort to live a normal life. My medication was working so well that I didn’t believe that I would need my life (the sun) to revolve around my diagnosis and the things associated with that (the earth). A week and a half ago changed all of that and I’m having to readjust the way I’ve looked at the solar system, changing my perspective from what I’ve known and lived the past five years of my life to one in which the sun now has to revolve around the earth. My treatment and all that surrounds it has to become the main focus of my existence. And that sometimes carries a huge toll.

Having said all of that, I don’t intend to glorify one aspect or the other. My existence is in the realm of God, which I feel is omniscient. God would be the solar system in it’s entirity. I know that I don’t exist outside of that, my faith is simply the realm in which all of these other things exist. I just use the solar system illustration as a reference point to the scope and size of my thoughts, feelings, and efforts. I hope that makes sense.

I’m starting to feel the effects of the stress and anxiety in a physical way. I’ve never experienced that before. I always believed that I’ve been strong enough to be made invulnerable to those kinds of things. I have that annoying eye twitch on occasion and a tight chest. It’s sort of disheartening in a way, but I know that not knowing anything about the next stop in my journey is a major contributor to that. There is also the personal struggles associated with daily life that I’m sure play a role. In any event, I feel like the boxer who has fallen to the mat for a second time in a single fight. At this point, I’m starting to feel vulnerable. Maybe that’s what this is all about.

In this fight, the boxer wins with a knockout in the late rounds. Battered, swollen, and bloody, for sure, but victorious nonetheless.

This is tougher than I often let on. I wouldn’t wish this on anybody.

Milk was a bad choice

I could have sworn I wrote a letter to the sun two years ago. I’m disappointed that it doesn’t read my blog. Or maybe it does, I don’t know. But this is what I do know: Global warming is chic again. And it isn’t concerned about you or your responsibilities. I even saw an ice cream man give up for a few minutes. I’m not talking about the one that drives around, I’m talking about the cat who pushes around his cart, simultaneously ringing the four bells he glued together. Dude took a knee in the shade. I felt sorry for him long enough for me to realize that I needed to blast my truck a/c from a 3 to a 4. I can imagine how hot it actually was for that guy.

Appointment confirmed for next Thurs, Aug 12 and Fri, Aug 13 in Houston. Katie asked if I was nervous. I didn’t think about it until she asked, but I told her I was, a little. That nervousness didn’t last very long though because I don’t think about things like that for very long. I’m an “in the moment” kind of guy. I have a hard time experiencing emotions related to a particular event outside of the present. I’ll probably be nervous when we start talking about test results with the doctor.

I feel as though I’ve been living an uncontrolled life since I was first diagnosed with Leukemia. Nobody can tell me for certain what is going to happen because with an illness like this there is no such thing as being certain. Certainty is reduced to likelihood and likelihood soon becomes synonymous with probability. Even if I wanted to control my environment, I can’t. And that’s how these things go. What I want to happen is a conflict of interest by default.

There is no book written about the innate ability to cope. Okay, maybe there are tons of books written on it so I take that back. But nobody searches out those books until they find out that they can’t. Coping is a lot like breathing. You just do it. I’m glad that I played sports. They taught me a lot. In sports, you can’t get better unless you do the small things. You can’t go to first base unless you hit the ball. You can’t stay on the field unless you get a first down. In this game, you can’t be healed unless you wake up and do your best to do whatever is asked of you. And if you do it the right way then you just get stronger, sharper, and grow as a person. It can be the worst experience of your life or the best. I choose for it to be the best. I want to help people. Thanks to God, I’m in the process of being qualified to do that. I’m learning, thinking, and praying that I can impact lives.

Welcome Back

Things got kind of crazy for a while. I suppose they always do. A big move and a new job was enough to get me out of the habit of blogging, but things are starting to slow down again. I feel that this may be the best way to stay connected, if not with others then with myself. I posted a note on my facebook a couple of days ago that informed my dear friends and family of my recent journey with my Leukemia. I was humbled by the response. I’m always humbled by the response. Here is that note:

As most of you know or have probably heard, I have Leukemia. It is called Chronic Myeloid Leukemia to be exact. I was diagnosed with this illness in January of 2006 and have been on a medication called Gleevec. This drug has done wonders for me throughout the years, but after my last bone marrow biopsy in June my oncologist felt as if we should take a more aggressive approach to my treatment. He suggested that I switch to one of two second generation drugs called Sprycel or Tasigna. We had a long talk about which would would benefit me more before the oncologist stated that he wanted to send off for a blood test to see how the cells were mutating. Because Sprycel and Tasigna work in slightly different ways, it would benefit me if we could determine which one would be the most effective. The test results were supposed to return sometime within two weeks. Although I was a little anxious about switching to a newer drug, I was determined to overcome the illness that has been more of a hindrance on the life that I want to live than it has been helpful. I was determined to do anything.

Wednesday, July 30th was a little over a month since I had that appointment. I finally received a phone call from UT Southwestern. The blood test discovered that I have what is called a t3151 gene mutation and the doctor’s determined that I would soon grow resistant to Gleevec and the 2nd generation drugs that we had previously discussed. They told me that I was being referred to MD Anderson in Houston with the hope that I can be put on a trial treatment. Needless to say, it was an emotional day, filled with more questions that answers. A couple of days later, I’m still unsure of what it all means for me and my future, but I feel that my heart is being prepared for the unknown. And I’m ok.

My quest here is to search out the prayers of those willing to pray for me and my family. It has been tough on us all and I humbly ask that you keep us in your prayers. We are tentatively scheduled for Thursday, Aug 12th & 13th. If I disappear emotionally, just know that I’m putting all of my efforts into getting through this rough period, while learning as much as I can about myself and the things I believe are important in this world. I plan on being a big part of not only my treatment, but of the treatment of so many other individuals who have been a part of this illness, and doing what I can to make a difference. I plan on blogging about all of the experiences and outcomes so that if you want to stay updated from a distance you can, or so that you can visualize your answered prayers. I think that will be a neat, neat thing. Thank you in advance for your thoughts, prayers, and encouragement. I wish I could go into more detail, but as of right now this is all I know. I love you all.

Justin

I wrestled with the idea of starting a new blog, but I don’t really think that I have to have one blog for one thing and another blog for another. I feel like blending the serious with the not so serious is all a part of the journey, which is opposite from my opinion of neopolitan ice cream. I think someone’s head was in the right place with that creation, but I’m not sure that it really works out. It just seems as if craving three flavors of ice cream in one sitting is a little over the top. So I’ll try to stick to something that is a little more synonymous with a chocolate and vanilla twist. You know what, I’m just going to do my best to produce an ice cream cone. Because I honestly think that if I can give you really good ice cream in this blog, you won’t need three flavors of average ice cream.

Just don’t expect sprinkles. They make a mess.