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.
If cancer is hard, dealing with the unknown is harder. Right now, I’m waiting for insurance approval to begin taking a medicine that was approved by the pharmaceutical company Ariad two weeks ago. Since it’s another clinical trial, there’s the foray of hoops to jump through. As soon as that’s cleared, if at all, then I’ll begin a new drug that is 75% effective against the t315i mutation that I have. That’s a way better rate of effectiveness than I was given in the first trial.
Bone marrow transplant
One of the heaviest decisions that I’ve had to make in my life is how to advance with my treatment. I have two relatively good options on the table; I could move forward with Ponatinib, a drug that I was approved for via compassionate care, or I could initiate a bone marrow transplant. I talked with both doctors and received two different perspectives (which complicated the decision), but in the end I decided to not dismiss any bullets that I have left and give the trial a shot.
The possibility of a bone marrow transplant will never go away. In fact, it’s still possible that I end up having a transplant before the year is over. Although I have three pretty good matches within my family, a search is still being conducted for an unrelated donor who might provide better odds for a successful procedure.
With leukemia, there are way more unknowns than there are certainties. I’m reminded of that daily. However, I’m constantly reminded of a lot of other things as well, things like gratitude, thankfulness, perspective, and the deep, nurturing aspects of our soul that call on us to love people.
I don’t fear cancer. I fear finding myself in a place where I’ve lost all that I’ve learned and experienced these past few months. I never want to let that go. I know that I’ll return to life soon, that I’ll be busy and preoccupied with school, wedding planning, work, and the events that define our daily lives, but the past sixty days has truly shaped me.
As painstakingly vulnerable and tumultuous as it’s been, I’ve endured something that I wouldn’t have otherwise experienced. I’ve seen an alternate side of compassion, love, encouragement, hope, and most importantly, God. To take that away from me would be worse than being on the receiving end of a conversation where I heard, “It’s possible that you have Leukemia.” I never wanted to go through this in vain.
As much temporary pain, heartache, hopelessness, and sorrow that is associated with cancer, there’s an equal, if not more, abundance of love, compassion, hope, courage, and purpose. My best days aren’t the days where I have the most energy or receive positive results (although that is nice), they’re when I’m reminded that all of this is temporary*. In the end, no matter what challenges we’re given, what truly matters is the condition of what is permanent; our hearts, how we view the world, our faith, hope, and most importantly, love**.
We’re all in this together. We all, to some degree or another, suffer from cancer. It’s just that, for me, it’s made known. I get to wake up every day to live it, see it, and breathe it. The world hasn’t changed, the struggle hasn’t been redefined, nor am I the first person to write about it. I’m just one of the lucky ones who gets to communicate it.
What is better, to be made aware of our condition and to experience life in a truly unique way or to be unaware and continue to live a life created by your own biases and misunderstandings? Ashamedly, I’ve lived the latter. It brought me insatiable emptiness, yet no joy. I never want to go back.
This is all purposeful. It’s sometimes difficult and often challenging, but in the grand scheme of things, this is nothing. Eternity and the things learned because of it, however, are everything.
*”So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.” – 2 Corinthians 4:18
**”Three things will last forever–faith, hope, and love–and the greatest of these is love.” 1 Corinthians 13:13 and “We continually remember before our God and Father your work produced by faith, your labor prompted by love, and your endurance inspired by hope in our Lord Jesus Christ.” 1 Thessalonians 1:3