Hello everyone! Forgive me for not keeping all of you up to date for the past year or so.
Many of you know I've recently had some new health issues come up, and I'll do my best to catch you up here.
First, a fly-by of the past year and a half. My last update was in September 2014, when I began my new chemo regimen - maintenance Decitabine. Every 6 weeks or so, I went to my home clinic for a couple hours for five consecutive days. This chemo was much less toxic than my first regimen, and I went straight to work after getting my dose of poison. Thankfully, my treatment really didn't affect my work schedule at all. Most weeks, I preached the Sunday after receiving five straight days of chemo, something that would not have been possible the year before.
Throughout that year, I traveled to Houston regularly for bone marrow biopsies. (That's really the only way to monitor the effectiveness of my treatment.) In my last update, I explained about Minimal Residual Disease (MRD), and how they measure it with a process called Polymerase Chain Reaction (PCR). For the entire year, that number didn't change. It stayed at 0.01, barely hanging on, taunting me, reminding me that I was not through with this whole cancer thing. Honestly, I just resigned myself to the fact that it wasn't gonna change. I had done almost two years of chemo to no avail.
My doctor had told me that I would do this new regimen for one calendar year. I began my first round on September 15, 2014, and snuck in my 10th round on September 14, 2015. After my levels rebounded, I headed to Houston for my next bone marrow biopsy. A few days later, I went through the obligatory process of logging into my account and checking my test results. Lo and behold, it changed! "No morphologic evidence of AML detected by Real Time PCR." I didn't know what to say! I emailed the doctor just to make sure I was reading it right, and he confirmed that this is what we've been hoping for. It was just such a good gift from God, that at a point when no more treatment was an option, He gave me this report. I went back in January 2016, and it was still clear. Yay!
Those clear reports really changed our whole perspective. For the first time since 2013, I began to live with the assumption that I was going to live a normal life. We began making longer term plans, dreaming about the future. One night a couple weeks ago, I went into the kids bedrooms while they were sleeping and thanked God that I was going to watch them grow up. My trips to Houston no longer carried dread about what we might find out; instead, they were just confirmation that I was still healthy.
I'm gonna be candid here. Men have testicles. End of biology lesson.
A few months ago, I noticed a change in my left testicle. I had noticed changes there before, and had actually consulted my doctors about it back in 2009. Tests were run, and I was assured that everything was normal. Dealing with something like leukemia has a way of causing you to neglect other health concerns. Like, "I'm doing chemo. I'll deal with this later." One day last month, I went with Karen to an ENT appointment she had, and the Urology desk was next to hers. I went over and made an appointment on a whim. She told me to come back the following Tuesday.
The following week, I showed my urologist what I had found. He ordered a testicular ultrasound (always a fun experience!). Afterward, he informed me that it wasn't a cyst. His gut was that it was cancerous. "I'd just take it out," he said. "We would know more after that." I honestly wasn't very phased. After Leukemia, testicular cancer didn't seem all that daunting to me (it has like a 98% cure rate in most cases). More of a nuisance than anything.
That afternoon, I emailed my doctor's team in Houston. "Off-topic question," I said. I explained what we had found and why my doctor here had suggested. He wrote back within five minutes (not a normal occurrence). "This isn't off topic! I strongly suggest you come to Houston for tests. We need to rule out the possibility that this is a leukemia relapse."
My heart sank when I read that. But I felt confident in a few things: 1) My bone marrow was normal at the molecular level. How could this be AML? 2) This thing had been hanging out for a while, and I hadn't noticed much growth. My tumors from AML grew at an alarming rate. 3) My brother had testicular cancer a few months before I got diagnosed in 2013. If your brother has testicular cancer, you're 8X more likely to get it.
With all that in mind, Karen and I went to Houston feeling pretty confident and at ease. I had labs drawn, got to have another ultrasound, and then saw the doc. From the start, we feel like they've been preparing us for the worst. He knocked down all my theories as to why this wouldn't be leukemia. He said that it could present as a tumor outside the bone marrow even if my bone marrow was 100% healthy. He said there is no "normal" when it comes to these things.
Then the tumor markers in my blood started coming back. Testicular cancer would elevate these levels. Leukemia would not. One by one, they came back normal. In other words, it's not likely this is testicular cancer. Our hope began to fade. The doctor explained that the only way to get an accurate diagnosis would be to biopsy the tissue. They'd do a PET scan to see if there were any more tumors (there weren't!), but the only way to biopsy the tissue would be to remove a testicle.
So yesterday, I had surgery in Houston. It was surprisingly easy. I feel a bit sore, but good overall. Now we wait. If the pathology reveals that I have indeed relapsed with AML, we will begin preparing for a Stem Cell Transplant. This has been a dreaded scenario since Day One for me. A transplant is a difficult and risky procedure, but it is the most effective way to treat leukemia. But over the past week God has settled my heart, and I'm even ready for this.
I've been reading Tim Keller's The Songs of Jesus as part of my daily devotional, and it has ministered to me deeply. Yesterday, before my surgery, the reading was on Psalm 31. Verse 15 contains the phrase "My times are in Your hands," and it replayed in my mind all day yesterday. No matter how confusing or discouraging my circumstances are, God is sovereign over them. I trust His goodness, His wisdom, and His love for me and my family.
I am deeply moved by your concern for me. Thank you for following my story and for remembering me in prayer. I am not alone. That makes all the difference.