Yesterday was the first day of my clinical trial for the protocol called DCC-2036. I’ll have an appointment once a week for a month, then once a month for five months, and then possibly once every three months after that.

In November, Aetna denied to cover my initial request for the trial. I had to wait for a month and a half while we appealed the decision. At the beginning of the new year, Blue Cross/Blue Shield became my insurance carrier and within two days, they agreed to cover me. In the eyes of science, the six week window between my old tests and the trial date was too large. That disqualified the old tests from being used to justify my need to be in the trial to begin with. As a result, I came to Houston last week to administer and submit new tests to the pharmaceutical company holding the trial. I got a chance to have another bone marrow biopsy and aspiration (where they draw liquid from inside of the bone). It was great fun. Based on the history of having bone marrow repeatedly taken from my body, I’d be a horrible candidate to be eaten after an airplane crash into the side of a snowy mountain. Sweet!

Back to yesterday. I won’t bore you to death with the details, but it goes a little something like this: I gave enough vials of blood to taunt Edward Cullen, I had sticky patches and cables put all over my chest to measure my heartbeat intervals like Ivan Drago in Rocky IV, and I had the great pleasure of testing my liver function in a manner involving the bathroom and a plastic cup a la any bathroom scene in Austin Powers, all before lunch. Life isn’t so bad. I enjoy being a faux movie star.

Soon after all of the testing was over, I walked over to the other side of the wing to have my vital signs taken. It’s where I get to find out how fat I am (weighed), how I’m not so much a hypochondriac (I nail 97.8 degrees every time), and how putting a blood pressure cuff on your arm never really lives up to all of the excitement of its ability to inflate and deflate itself at the push of a button. As soon as that was over, Katie and I waited in the waiting room to be put in another room where we would wait for the doctor (Jerry Seinfeld’s old bit). Amidst all of that, however, I kept myself occupied by a perfectly placed, round, metal cylinder called a trash can.

I can’t tell you how many times I asked Katie if she thought I could make it. Ok, yes I can. Three. The first ball I made was from the red bandage that covered the needle mark on my arm. It makes such an awesome ball. “I hope someone comes from the blind side and you hit them,” said Katie as I raised my right arm. “Me too,” I responded. Our backs were against the wall and the possibility of that happening was high. BANG. Brick. I was a little short. I got up as fast as I could to minimize the embarrassment, grabbed the manipulated ball, and began to walk back. A few steps towards my chair and I couldn’t take it anymore (turn-around fadeway *Swish*).

Moments later, I asked Katie for a tissue. I’ve been fighting allergies recently. She asked, “You’re just wanting to make another ball to shoot, aren’t you?” “No.” I blew my nose and made another ball. BANG. Wedged between the trash can and wall, I shot this one a little too far.

I’ll have time to perfect my game.

We finally met with the doctor and research nurse around 1:45pm. I received my new medicine and popped the new pills in the office. It was an anticlimactic beginning to what I was hoping would be the rest of my life. Two 75mg pills on an empty stomach, two times a day. Not bad.

This shows my superficial blood counts as of yesterday. 2.5 weeks w/o medication and I have double the number of white blood cells, which crowds out and lowers red blood cells. “H” next to the number indicates higher than normal and “L” represents lower than normal. Normal ranges are on the far right. 
This is what they look at on a cellular level, given by the results of my bone marrow. “The percentage of BCR-ABL to ABL transcripts” shows that 75.12% of my cells show the Philadelphia Chromosome, which is my Leukemia. It produces and introduces immature white blood cells into my blood stream prematurely, which is why my white blood cell count is elevated. The goal is to get this to 0.

After the appointment, Katie and I had a little time to eat. We went downstairs to the cafeteria and grabbed a bite, but we were already late for another appointment we had with the Dr. Ciurea in the stem cell transplant department. Dr. Cortes, my oncologist had set this appointment up. During our initial talk in November, Dr. Cortes suggested that I start the trial, but that I also initiate the process of testing for a bone marrow match in the event that the trial does not go well. It’s best to be prepared.

The meeting with Dr. Ciurea caught Katie and me a little off-guard. I went in to the appointment with the idea that we’d begin the process of packing this parachute in case I needed it and left thinking that it may be the only real and significant option that I have left. Dr. Ciurea suggested, based on the recent turbulence of my illness, that I’d be facing an uphill battle from now on, and that even the “low probability” of a complete molecular response (remission) would be temporary, at best. He said that the behavior of my illness has shown a great amount of volatility, and that the t315i mutation that has prevented my medicine from working (to this point) is a perfect example of that. He suggested that a bone marrow transplant would be the only long term solution.

He sat with us for about thirty minutes as he explained the process, the way the transplant works, how they look for matches, how long the recovery would be (four months), the potential complications, and how far these procedures have come over the years. He also answered all of the questions that we could come up with in the limited time we were there. It was information overload.

In reality, I left feeling a lot better about the procedure. It’s not as invasive as I thought it would be. It’s not as painful as I thought it would be. I won’t be in a bubble like I thought I’d be. I won’t be isolated. And the likelihood of making it through without any significant issues can be pretty high if I have a good enough match. It’s still a major operation, but it’s a lot less scarier than I anticipated.

Needless to say, I can tell I’m getting to the top of the mountain because the weather is getting colder, the elements are rougher, my level of comfort is waning, and I find myself in a place where people have usually had enough and turn around. However, this is a journey where I can’t turn around. I’ve been praying for moments like this, moments of healing, for opportunities to see God for who He is and not what I believe, or even want Him to be, for my mind be taken from a place of mediocre belief and transformed into a faith designed by God, for his children. I would be saddened if, in a moment where all of those things are given to me, I turned away and said, “No, I want to experience this kind of faith in my own way, with my own understanding, in the safety net of my own comfort, where I’m not hurt, where I’m unchallenged, where I can’t be used and I won’t be called upon.” It would be much easier to do that. It would make a lot more sense to me. It would lead to a safe faith, where I could call upon God to help get me out of a speeding ticket or to get me a particular job. But all of that would lead to emptiness. There is already way too much emptiness on this earth.

I grew tired of making requests of God and began praying that I would instead pay attention to the requests God has made of me. And quite honestly, the first step in that is having the faith that this will all make sense in the end. Whether or not I struggle negatively with the circumstances is irrelevant to the big picture. What is relevant is the transformation of my self, understanding, wisdom, knowledge, joy, hope, etc through all of the circumstances I may find myself in. I admit that this would be twice as hard on me if I wasn’t the one going through all of this, so I want everyone to know where I’m coming from. Maybe that will make things a little easier for all of us.

It’s not easy. As I comfort my family, I see and feel their pain as they worry about all of the things that can go wrong. I empathize, because I know that I live in a broken, imperfect, fallen, and temporary world where faith isn’t an exemption for mortality. But this is why we pray. This is why I have friends and family. This is why God has given us His word. So that we can celebrate our existence through hope, find patience in affliction, and remain faithful to a true and perfect love. As much as the world sometimes tries to convince us otherwise, I hold on to that truth.

As for now, I will stay with the clinical trial. We’ll monitor it for the month that we are here and I’ll talk to Dr. Cortes about the opinions and outlook Dr. Ciurea shared with us. Hopefully, the trial goes so well that down the line we’ll have to make the difficult decision to stay with the drug or move forward with the transplant.

Stay positive. See the good in all things.

12 Responses

  1. Justin, thank you so much for your post. I think you are a beautiful writer and get so much out of reading your posts. Stay strong and FIGHT!! We are here with you and Katie to help, you just need to tell us all what to do. Love you both. – Julia

  2. Thank you so much Julia! That means the world to me. I can't wait until we're on the other side of this thing. Thinking and praying for you and that side of the family all of the time!

  3. I am so thankful that you are my partner in life. We will cherish each day, hold each other tight, and give thanks for everything we have. You are an amazing voice in this world, and I love you more and more each day!

    Jules, we love you too sis.

  4. Thanks so much for the update, Justin. You know you're always in my heart, head and prayers. I truly do have faith you'll come out on the other side of this. Love to you both!

  5. Very good post, Justin. I hope the trial goes well and we will all be thinking about you. Keep staying positive! Also, go Lakers.

  6. Hope the trial goes well! I became a bone marrow donor a couple of years ago. I don't know how bone marrow transplants work, but I imagine that if you get mine that means I can control you from a distance.
    Thinking about you and Katie

  7. Kate, I've always wanted to play the role of Bernie in Weekend at Bernie's. This could work out great.

    I'm learning a lot more about it as I go along. It's really eye opening to learn how easy it is to save someone's life via the marrow program. I'll have to post about this in the future.

  8. the Lord has blessed you with an awesome outlook and the amazing skill to share that outlook beautifully. i'm praying that the trial works well and that you continue to be blessed!

  9. That's kind of a scary thought. I hope it doesn't come down to that.
    But I guess it's good to be prepared. I love your faith and you know, I'm still praying for ya.
    It's so great that you have such a wonderful family to support you.
    And that Katie is there with you through it all.
    Be thankful for all that you have. Because through all of this, you're still so blessed.
    keep the faith, yo.

  10. justin, thank-you for these posts. for never losing "you" in your posts (i mean who else can make a joke about how you wouldn't be the first "meal of choice?" lol) and for your honesty, and for sharing your life so openly. I could just picture how scary that meeting was that caught you off-guard with Dr. Ciurea. What i immediately thought was how blessed you are to have Katie by your side. It's amazing how your other half can give you such comfort and make you feel safe. i'm so glad you have each other.

    i've been pretty worried about something lately-NOT that it could compare by any means to what you are going through- but i wanted to mention it because i wanted to share something that fit in my heart so well, it brought tears to my eyes :

    WORSHIP ME ONLY. Whatever occupies your mind the most becomes your god. Worries, if indulged, develop into idols. Anxiety gains a life of its own, parasitically infesting your mind. Break free from this bondage by affirming your trust in Me and refreshing yourself in My Presence. What goes on in your mind is invisible, undetectable to other people. But I read your thoughts continually, searching for evidence of trust in Me. I rejoice when your mind turns toward Me. Guard your thoughts diligently; good thought-choices will keep you close to Me.

    He will have no fear of bad news; his heart is steadfast, trusting in the LORD. -PSALM 112:7

    When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put childish ways behind me. -1 CORINTHIANS 13:11

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