My health has been quite a journey over the past four years or so! For a year and a half now, I've been pretty silent on this blog, mainly because I've been enjoying life with my family and ministry with my church. But, new challenges are fast approaching on the horizon, and I'd like to update anyone who is interested so you can join us in prayer.
(I've written numerous posts before now telling the story of my diagnosis and treatment of Acute Myeloid Leukemia. Feel free to skim those if none of this is making sense! Those posts start here.)
NOVEMBER TO NOW
After September 2015, I had no detectable leukemia activity in my body. I was going to MD Anderson in Houston every 3 months for checkups and all tests continued to be negative. There was that one blip on the radar where I got testicular cancer that turned out to be unrelated to the leukemia.
Well, last November the most sensitive of all my tests revealed that an important measurement (known as PCR) had resurfaced in my tests. At that point, it was at 0.01%. My doctor thought there was a good chance it was a false positive. After all, we are talking one abnormal cell out of 100,000. How could they find that?!
In February 2017, that number climbed to 0.03%. "Nothing to worry about, Chris," said my doctor. "We'll continue to monitor this trend. If it continues to grow, I would like to recommend that you enter a clinical trial. There's lots of great research going on in immunotherapy. As opposed to chemotherapy, which just poisons your body, immunotherapy can actually help your body's immune system fight the cancer cells as they form." That sounded cool to me! He went on, "If your PCR rises to something like 0.1% we will begin to explore those options."
Then May happened.
LAKE CLAIBORNE (AGAIN!)
In a very poetic twist, a group of friends had scheduled a guys weekend at Lake Claiborne State Park, about 30 minutes away. This was the same guys and the same state park where I realized I was seriously ill in October of 2013. I wrote about that weekend here. As we drove through the gates on that beautiful Friday afternoon, I commented that it was a bit eerie revisiting this place that carried so much emotion for me 3 1/2 years earlier.
After dinner, we gathered around a card table and I wondered how long it would take me to lose my $10 so I could go to bed. But my phone buzzed in my pocket. "New test result from MD Anderson." Yay! (I was very accustomed to these emails). I quickly logged in to clear the bold letters of the unread test result, because who could live any other way?!
But something caught my eye. This wasn't the PCR test. It was some other chromosomal-analysis something or other that I had never even looked at before, because as long as I'd been checking these results, it had always been normal. But these results weren't normal. Something called aberrant myeloblasts had been detected. I had no idea what those were, but I didn't like the sound of them. I tried to muscle through the rest of that weekend without bringing my black cloud on the rest of the guys.
A couple days later, the PCR results would come in: 5.7%. Remember, my doc had said if I reach 0.1% I'd be a decent candidate for the clinical trial. But I was at 5.7%. I figured I was knocking on death's door, began putting my affairs in order, etc.
(That's a joke, kinda. But processing news like that never gets easy. For a few nights, I couldn't sleep well. I'd toss and turn, and wake up in a sweat, hoping that it wasn't real. But it was. I'd lay there next to Karen, who probably wasn't sleeping great either. And my mind would fill with Bible verses. But not verses about hope and joy and peace. Honestly, the one that replayed in my head most was Jonah 2:5-6 - I sank beneath the waves, and waters closed over me. Seaweed wrapped itself around my head. I sank down to the very roots of the mountains. I was imprisoned in the earth, whose gates lock shut forever.
Not very encouraging, I know. But it's what I felt at the time. I was re-entering the nightmare, and there was nothing I could do to stop it or even slow it down. I had no control. Life as I hoped it would be was slipping from my grasp, and I was being pulled down into a hopeless darkness.
My doctor decided that he'd still like to try the immunotherapy clinical trial, and he was optimistic about its results in other patients. So for June and July, that's what I did. In August, my PCR was 47%. I was numb to the numbers at this point. It seemed crazy that a few short months ago I had been alarmed that this number was at 0.03%. Man, perspective is everything.
It had become clear that a stem cell transplant was my best option at this point. This treatment has been something I've dreaded since my diagnosis, even though it's the most effective treatment of AML. It's hard.
Here's the gist: they blast me with really strong chemotherapy that wipes out my body's ability to create new blood cells (because my body keeps creating unhealthy blood cells that give me leukemia.) Then, when all my stem cells are dead, they give me the stem cells of a matching donor. My body will then literally begin producing that person's blood in my bone marrow. It's crazy. And amazing.
My team in Houston has been working hard to coordinate all the details of the transplant. After learning that none of my siblings were matches, they went to their database and found two 10/10 DNA matches for me. Lots of patients tragically never find a match. It's amazing to know that I've got two, even though they'll only actually use the stem cells from one. I have no idea who these folks are, or where they live in the world. But it's an amazing thing that two complete strangers have agreed to step forward, endure some inconvenience, and save my life.
In preparation, I've undergone two round of chemo now that have killed almost all the abnormal cell growth in my body. My PCR is back at 0.01%. (Entering chemo with no active disease is a really positive thing).
NOW UNTIL JANUARY?
Yesterday, we finally got some solid dates and have begun making plans for this treatment. Here's what we know: I'll head to Houston on October 4 for some pretests. My actual transplant date (birthday?) is set at October 31, which I'll happily share with my new baby niece, Leddy, who is planning to enter the world on that day.
Lots of things will happen between now and then. It's like a countdown to a rocket launch. Pretests, pre-treatments, admittance to the hospital on October 24, and then the heavy chemo leading to transplant.
This will be a challenging season for our family, to say the least. Starting October 24, I'll be in the hospital for a month. Physically, this will be a very demanding time. Upon release from the hospital, I'll need to stay in Houston for approximate two more months as my body recovers and I go in for countless tests and transfusions. If all goes well, I should be able to return home in mid- to late-January. The Hancheys will enjoy Thanksgiving and Christmas together in Houston!
Please pray for us. Pray for my strength and healing obviously. But also pray for Karen. She'll be sprinting back and forth between Ruston and Houston often. Pray for Marilyn, our sweet precious friend who has graciously accepted our invitation to be a fill-in mom for our three kids who will stay in Ruston for most of this time. And pray for our kids - Jude (8) , Owen (6), and Charlotte (4). We trust God's wisdom in all this, but often question His timing. These are such formative years for them, and our hearts ache that part of that formation includes having a mom and dad who can't be with them for long stretches of time.
But God made mountains and valleys for a reason. A flat world sure would be boring.
Here are two lessons I'm learning:
1. Dreading it is harder than living it. Thinking about walking through the valley of the shadow of death is way worse than actually walking through it. So that's what we're doing. We're putting one foot in front of the other, hanging on the promise: "for You are with me." (Psalm 23)
2. Hope that terminates on this life is no hope. I believe God will heal me through this. I really do. But if He doesn't, the content or object of my hope will not have changed. My health, one day, will ultimately fail. Jesus entered the tomb, so I know that I'm not alone even there if I die from acute myeloid leukemia. But Jesus also walked out of the tomb. And when He did, He revealed that one day I'll rise from whatever grave I'm in and enter a renewed, restored, redeemed creation forever. And everything that has been ruined by sin will be undone and made right. That's my defining reality. Sometimes it just takes the valley of the shadow of death to remind me of it.
Thanks everybody for reading. I'll try and do a better job keeping you up to date.
Friday, September 22, 2017
Thursday, March 3, 2016
I Have Testicular Cancer!
Good news today! My urologist called about 10:30 this morning. "Mr. Hanchey, I'd like to discuss your pathology reports if you have time." Uh, yeah Doc. I think I can work you in.
He said that the tumor they removed last week was revealed to be a Seminoma, which is your garden-variety testicular cancer. It's what my brother had in the summer of 2013, and it's exactly what we've been praying for. This was a best-case scenario for us after our trips to Houston the last few weeks. It seems backwards to say, "Yay! I have testicular cancer!" But such is the strange journey I'm on.
Here's the gist: I will not be undergoing any new treatment. I repeat: no new treatment. The doctors will continue to monitor my blood levels alongside my normal tests for leukemia. There is an 80-90% chance that there will be no recurrence of this cancer.
Karen and I are breathing a huge sigh of relief today. It's amazing how much one bit of good news can change your entire outlook on life. I woke up this morning, and literally everything was on pause. We could not make any plans about anything. Everything was day to day. Then I have one three minute phone call, and life seems to be back to normal - a better, more wonderful normal.
There are certain things we just can't know, but my doctors were not encouraging when I was in Houston two weeks ago. All signs were pointing to a leukemia relapse. Karen and I don't want to discount the role of prayer in this situation. We have a strong sense of God's intervention in our situation, as we know that tons of people were praying very fervently for us. It is a humbling, encouraging, and life-giving thing to know that people are bringing our needs before the Father.
We want to thank all of you for your prayers, love, encouragement, service, gifts, and friendship. God's blessings come to us in very diverse ways - maybe especially through trials. You all are a gift to me. Thank you.
The Lord sits enthroned over the flood; the Lord is enthroned as King forever.
The Lord gives strength to His people; the Lord blesses His people with peace.
I will exalt You, Lord, for You lifted me out of the depths
and did not let my enemies gloat over me.
Lord my God, I called to You for help, and You healed me.
You, Lord, brought me up from the realm of the dead;
You spared me from going down to the pit.
- Psalm 29:10-30:3
He said that the tumor they removed last week was revealed to be a Seminoma, which is your garden-variety testicular cancer. It's what my brother had in the summer of 2013, and it's exactly what we've been praying for. This was a best-case scenario for us after our trips to Houston the last few weeks. It seems backwards to say, "Yay! I have testicular cancer!" But such is the strange journey I'm on.
Here's the gist: I will not be undergoing any new treatment. I repeat: no new treatment. The doctors will continue to monitor my blood levels alongside my normal tests for leukemia. There is an 80-90% chance that there will be no recurrence of this cancer.
Karen and I are breathing a huge sigh of relief today. It's amazing how much one bit of good news can change your entire outlook on life. I woke up this morning, and literally everything was on pause. We could not make any plans about anything. Everything was day to day. Then I have one three minute phone call, and life seems to be back to normal - a better, more wonderful normal.
There are certain things we just can't know, but my doctors were not encouraging when I was in Houston two weeks ago. All signs were pointing to a leukemia relapse. Karen and I don't want to discount the role of prayer in this situation. We have a strong sense of God's intervention in our situation, as we know that tons of people were praying very fervently for us. It is a humbling, encouraging, and life-giving thing to know that people are bringing our needs before the Father.
We want to thank all of you for your prayers, love, encouragement, service, gifts, and friendship. God's blessings come to us in very diverse ways - maybe especially through trials. You all are a gift to me. Thank you.
The Lord sits enthroned over the flood; the Lord is enthroned as King forever.
The Lord gives strength to His people; the Lord blesses His people with peace.
I will exalt You, Lord, for You lifted me out of the depths
and did not let my enemies gloat over me.
Lord my God, I called to You for help, and You healed me.
You, Lord, brought me up from the realm of the dead;
You spared me from going down to the pit.
- Psalm 29:10-30:3
Saturday, February 27, 2016
February 2016 Update
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.
LAST YEAR
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!
LAST WEEK
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.
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.
LAST YEAR
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!
LAST WEEK
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.
Monday, May 18, 2015
Resection
This is the 9th of a series of posts chronicling Chris' battle with Acute Myeloid Leukemia.
*It's been quite a while since I posted anything. I'm picking up where I left the story off in the post called "The First Couple Days." Feel free to skim that post if you'd like a refresher. As always, thanks for reading.
GOING PUBLIC
That Sunday morning (October 20, 2013) I stood up in front of our church and told them what I knew, which wasn't much. Basically, I had some type of cancer growing in my abdomen and on my back, and that the doctors were waiting for some more information before they could decide what I had. I had been told it's "probably either a lymphoma or sarcoma," and I relayed that news to the congregation. I was honest - I told them I was scared, but that I believed two things beyond any doubt: God is strong, and God is good.
Some people came to me after the service and told me how relieved they were to hear that it was a lymphoma, because those are super-duper treatable. (This was encouraging news at the time, but would haunt me in the coming months once I found out that I did not have a lymphoma - or really a sarcoma for that matter.)
Someone else told me about a website called chrisbeatcancer.com. That afternoon, while the whole family was napping, I watched a video on his homepage. That ten minutes was a very important moment for me in my treatment, and one that I would recommend to anyone facing any type of cancer. God used that guy's testimony to bring comfort to my soul, and to help me breathe a bit deeper about the whole process.
When I met with Dr. Osafo on Tuesday, he updated me on my condition. He said that the biopsy revealed the cancer to be a myeloid sarcoma, which is a tumor that sometimes presents itself alongside acute myeloid leukemia, a cancer of the blood. What perplexed him is that my bone marrow was clear, so I wasn't showing other symptoms of leukemia. He suggested that they perform a resection of my terminal ilium (they'd cut out a lot of my small intestine), let the doctors get more information about it, and then we move forward with treatment.
I was speaking regularly to one of my best friends from college named Jason Mizell who also happens to be a surgeon specializing in abdominal cancers. I know, right? Jason actually went through medical school with Dr. Byrnes who was operating on me, so Jason was able to call him and then translate all the doctor speak for me over the phone. Jason told me that leukemia isn't usually treated with surgery, but with chemotherapy, so he was confused as to why I would take that route. But when he heard that my pain was such that I could not eat or function, he understood and agreed. We scheduled my surgery for Thursday, October 24.
Throughout that week, my stomach pain came back in waves. It would spike, I would vomit, and then it would subside again. I called Dr. Byrnes numerous times that week asking if he would go ahead and admit me, as my pain was often unbearable. On Wednesday, he finally did. I would undergo surgery the next morning, but wasn't nervous or even concerned. Because Dilaudid.
SURGERY
On the morning of my surgery, Dr. Byrnes came in and gave me the run down of what they were going to do to me. He reiterated that this surgery would not cure my cancer, but would buy me some time to get to MD Anderson and take next steps. He hoped to perform the procedure with a scope, but that could only happen if the tumor was pretty localized. If the cancer was widespread he would need to "open me up," which meant make an incision that looks like a big question mark around my naval. This option would be much more painful with a much slower recovery.
I woke up a few hours later and was told that I had a huge incision that looks like a question mark around my naval. I was woozy, but remember there being a really somber atmosphere in the room. I have a friend named Debi who is a surgical nurse and was in the room when they opened me up. She has told me that my procedure was her darkest day as a nurse. When they looked inside me, cancer was everywhere. No one expected it to be as widespread and advanced as it was. They were shocked that any food had passed through my intestines at all. Dr. Byrnes removed about two feet of my small intestine, which was the most affected portion. But he said that there was still lots more cancer, and that it would grow quickly. (Debi also told me that the cancer was green, which has been an interesting fact throughout this whole ordeal).
I didn't care about any of this at the time. All I cared about was the large tube running from my stomach out my nose that drained blood for the next two days. Is that the only way to drain a man's stomach these days?!
The night of my surgery, the nursing staff got pretty concerned. I was so doped up on pain meds, my heart rate and breathing were dangerously low. I think I was breathing 6 times per minute. At one point I remember waking up to the nurse standing over me calling my name to make sure I was still breathing at all. They had a little mini-conference in the hall, and they they gave me some pain-med-reversal drug from the pit of hell, and it brought all my pain out into the light. I was miserable. I begged my nurse to give me a pain killer, but she was of the drill-sergeant variety and was waiting for my blood pressure to reach a certain point. Even though clouded from the anesthesia, I remember the pain. I just felt so tired of hurting.
Looking back, I wish I hadn't had the surgery. Sure, the pain from the tumors was ridiculous and in a few days it could've killed me. But I started chemo two weeks later, and the tumors vanished almost instantly. This procedure is a very difficult one to recover from, and I was no different. Had I known then what I know now, I would have rushed into chemo treatment and bypassed the surgery.
But in the midst of suffering, we generally can't see that far ahead. I couldn't know at that time what I know now. So when we're in the valley, hemmed in by mountains on all sides, all we can do is keep walking. Not every step we take will be the best one. But still, we keep walking. By God's grace, He can use even our failures to make something beautiful.
*It's been quite a while since I posted anything. I'm picking up where I left the story off in the post called "The First Couple Days." Feel free to skim that post if you'd like a refresher. As always, thanks for reading.
GOING PUBLIC
That Sunday morning (October 20, 2013) I stood up in front of our church and told them what I knew, which wasn't much. Basically, I had some type of cancer growing in my abdomen and on my back, and that the doctors were waiting for some more information before they could decide what I had. I had been told it's "probably either a lymphoma or sarcoma," and I relayed that news to the congregation. I was honest - I told them I was scared, but that I believed two things beyond any doubt: God is strong, and God is good.
Some people came to me after the service and told me how relieved they were to hear that it was a lymphoma, because those are super-duper treatable. (This was encouraging news at the time, but would haunt me in the coming months once I found out that I did not have a lymphoma - or really a sarcoma for that matter.)
Someone else told me about a website called chrisbeatcancer.com. That afternoon, while the whole family was napping, I watched a video on his homepage. That ten minutes was a very important moment for me in my treatment, and one that I would recommend to anyone facing any type of cancer. God used that guy's testimony to bring comfort to my soul, and to help me breathe a bit deeper about the whole process.
When I met with Dr. Osafo on Tuesday, he updated me on my condition. He said that the biopsy revealed the cancer to be a myeloid sarcoma, which is a tumor that sometimes presents itself alongside acute myeloid leukemia, a cancer of the blood. What perplexed him is that my bone marrow was clear, so I wasn't showing other symptoms of leukemia. He suggested that they perform a resection of my terminal ilium (they'd cut out a lot of my small intestine), let the doctors get more information about it, and then we move forward with treatment.
I was speaking regularly to one of my best friends from college named Jason Mizell who also happens to be a surgeon specializing in abdominal cancers. I know, right? Jason actually went through medical school with Dr. Byrnes who was operating on me, so Jason was able to call him and then translate all the doctor speak for me over the phone. Jason told me that leukemia isn't usually treated with surgery, but with chemotherapy, so he was confused as to why I would take that route. But when he heard that my pain was such that I could not eat or function, he understood and agreed. We scheduled my surgery for Thursday, October 24.
Throughout that week, my stomach pain came back in waves. It would spike, I would vomit, and then it would subside again. I called Dr. Byrnes numerous times that week asking if he would go ahead and admit me, as my pain was often unbearable. On Wednesday, he finally did. I would undergo surgery the next morning, but wasn't nervous or even concerned. Because Dilaudid.
SURGERY
On the morning of my surgery, Dr. Byrnes came in and gave me the run down of what they were going to do to me. He reiterated that this surgery would not cure my cancer, but would buy me some time to get to MD Anderson and take next steps. He hoped to perform the procedure with a scope, but that could only happen if the tumor was pretty localized. If the cancer was widespread he would need to "open me up," which meant make an incision that looks like a big question mark around my naval. This option would be much more painful with a much slower recovery.
I woke up a few hours later and was told that I had a huge incision that looks like a question mark around my naval. I was woozy, but remember there being a really somber atmosphere in the room. I have a friend named Debi who is a surgical nurse and was in the room when they opened me up. She has told me that my procedure was her darkest day as a nurse. When they looked inside me, cancer was everywhere. No one expected it to be as widespread and advanced as it was. They were shocked that any food had passed through my intestines at all. Dr. Byrnes removed about two feet of my small intestine, which was the most affected portion. But he said that there was still lots more cancer, and that it would grow quickly. (Debi also told me that the cancer was green, which has been an interesting fact throughout this whole ordeal).
I didn't care about any of this at the time. All I cared about was the large tube running from my stomach out my nose that drained blood for the next two days. Is that the only way to drain a man's stomach these days?!
The night of my surgery, the nursing staff got pretty concerned. I was so doped up on pain meds, my heart rate and breathing were dangerously low. I think I was breathing 6 times per minute. At one point I remember waking up to the nurse standing over me calling my name to make sure I was still breathing at all. They had a little mini-conference in the hall, and they they gave me some pain-med-reversal drug from the pit of hell, and it brought all my pain out into the light. I was miserable. I begged my nurse to give me a pain killer, but she was of the drill-sergeant variety and was waiting for my blood pressure to reach a certain point. Even though clouded from the anesthesia, I remember the pain. I just felt so tired of hurting.
Looking back, I wish I hadn't had the surgery. Sure, the pain from the tumors was ridiculous and in a few days it could've killed me. But I started chemo two weeks later, and the tumors vanished almost instantly. This procedure is a very difficult one to recover from, and I was no different. Had I known then what I know now, I would have rushed into chemo treatment and bypassed the surgery.
But in the midst of suffering, we generally can't see that far ahead. I couldn't know at that time what I know now. So when we're in the valley, hemmed in by mountains on all sides, all we can do is keep walking. Not every step we take will be the best one. But still, we keep walking. By God's grace, He can use even our failures to make something beautiful.
Friday, September 12, 2014
A Brief Update: September 2014
I'm taking a break from telling the story of my battle with Leukemia. I'd like to let you know what's going on today.
For those of you who have been walking this road with me, I want to let you know where things currently stand. So here goes...
Back in July, I finished my last of seven rounds of intensive chemotherapy in Houston. This was the same regimen I began back in November. I entered remission in December, after just one round of chemotherapy. But treating leukemia is difficult. Sending into remission is relatively easy; keeping it there is not. So the final six rounds are to "kick the cancer while it's down."
A bone marrow test in August showed that I am still in remission. There is no active cancer in my body. There is a very sensitive test they perform on my bone marrow called a "Real Time PCR" test. PCR stands for "polymerase chain reaction." They extract some marrow, and let it culture in a lab for a few days. If a certain protein is created, I have what is called "Minimal Residual Disease." In November, when I had active leukemia, this protein number would've been 100%. In December, it was 0.08%. In February, it was up to 0.19%. Then in May, 0.01%. Almost nothing. The goal was nothing.
This most recent PCR test showed the protein number to be 0.03%. So it isn't gone. Honestly, I was pretty bummed when I heard the news. This number means that I am probably more prone to relapse because that protein is present. It means that chemo wasn't completely successful to accomplish what we had hoped. This "minimal residual disease" does not necessarily mean my cancer will come back. But scientists have reason to believe that it means I am at an increased risk. This type of testing is all very new, and I'm fortunate to be a part of it.
Therefore, on Monday I'm beginning a new type of therapy. It's called "Maintenance Therapy," and it's basically a really light chemo dose still designed to chase down those last few cells that are creating the protein. I will be treated in Ruston, which is a blessing. A round is five days of treatment, an hour a day. I'll repeat that about every four weeks, up to 12 cycles. My doctors have told me that I will probably not notice any side effects. I'm hoping to work full time this year, which I'm really excited about.
Please continue to pray with me. I'm asking that God would completely heal me, that the protein number would be 0.00%. I'm trusting in His strength, in His wisdom, and in His goodness.
Also, please pray for Karen. I'm convinced that this journey has been much more difficult for her than it has been for me. She's an incredible wife, and an incredible mom. Pray for her strength and peace.
Finally, pray for our kids. I'm hoping that this whole ordeal is a tiny blip on the radar of their childhood memories. That they always remember a healthy dad who was present with them. May they see in their dad someone who lives by faith, and may that faith take root in their souls as well.
Feel free to use the comments section for any questions you may have. I'll do my best to answer what I can here.
A bone marrow test in August showed that I am still in remission. There is no active cancer in my body. There is a very sensitive test they perform on my bone marrow called a "Real Time PCR" test. PCR stands for "polymerase chain reaction." They extract some marrow, and let it culture in a lab for a few days. If a certain protein is created, I have what is called "Minimal Residual Disease." In November, when I had active leukemia, this protein number would've been 100%. In December, it was 0.08%. In February, it was up to 0.19%. Then in May, 0.01%. Almost nothing. The goal was nothing.
This most recent PCR test showed the protein number to be 0.03%. So it isn't gone. Honestly, I was pretty bummed when I heard the news. This number means that I am probably more prone to relapse because that protein is present. It means that chemo wasn't completely successful to accomplish what we had hoped. This "minimal residual disease" does not necessarily mean my cancer will come back. But scientists have reason to believe that it means I am at an increased risk. This type of testing is all very new, and I'm fortunate to be a part of it.
Therefore, on Monday I'm beginning a new type of therapy. It's called "Maintenance Therapy," and it's basically a really light chemo dose still designed to chase down those last few cells that are creating the protein. I will be treated in Ruston, which is a blessing. A round is five days of treatment, an hour a day. I'll repeat that about every four weeks, up to 12 cycles. My doctors have told me that I will probably not notice any side effects. I'm hoping to work full time this year, which I'm really excited about.
Please continue to pray with me. I'm asking that God would completely heal me, that the protein number would be 0.00%. I'm trusting in His strength, in His wisdom, and in His goodness.
Also, please pray for Karen. I'm convinced that this journey has been much more difficult for her than it has been for me. She's an incredible wife, and an incredible mom. Pray for her strength and peace.
Finally, pray for our kids. I'm hoping that this whole ordeal is a tiny blip on the radar of their childhood memories. That they always remember a healthy dad who was present with them. May they see in their dad someone who lives by faith, and may that faith take root in their souls as well.
Feel free to use the comments section for any questions you may have. I'll do my best to answer what I can here.
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