I don’t think I’ll forget the fateful day that my life became an open book. This may come as a surprise to many of y’all, but for the first three years of my cancer battle, I managed to stay relatively private. Outside of our friends, family, and some within our church, no one knew too much about what was going on with the Weatherlys in Athens, other than the bits and pieces that were shared in conversations. As I’m sure many of you are aware, things changed in the Spring of 2016 when I was due for a major surgery in Houston, and Kim urged me to create a site to update folks because we’d be away from home for several weeks. But, as has been the case seemingly countless times since, disappointment and despair from bad news opened the mental, emotional, and spiritual floodgates of words within this “computer guy” who had always dreamed of being a writer.
While it is true that I enjoy writing, as the lifetime of empty pages since I walked the hallways of Park Hall of UGA’s English Department testify, writing isn’t something I do naturally; clearly, I require some purpose and motivation. Well, ever since I awoke from that surgery in 2016 and was told that the surgeon aborted the procedure because of “cancer seeding” in my pelvis, my clear purpose in writing has been to find and cling to the Christian’s hope in the midst of adversity, and my motivation has been to share my struggle to do so with any Christians who are afraid to be honest and open about their struggles and non-Christians who need to hear about this hope. Why would I be crazy enough to write about so many deeply personal feelings and experiences? First, because I take very seriously the Christian tenet that my life no longer belongs to me but instead belongs fully to Christ, and as such should be devoted to serving Him. The other is that, as someone living with a terminal disease, what do I have to lose by being honest and vulnerable, anyway? So, when my mind became filled with words about how Christ has been at work in me through cancer, it seemed a calling to pour them into vignettes that may or may not have also provided a health update.
But this year has been so very difficult. With the near constant infections, surgeries, pain and malaise, and above all the roller-coaster of plans made and then broken by bad news, it has been hard to consistently write. Frankly, I just haven’t had the words. But it isn’t like I didn’t want the words. I have desperately longed for them. It would appear that God has had other plans for me.
This is no more apparent than how the past month has unfolded. As I reflect on it now, I see that there were moments when I thought it might be a good time to provide an update, and I actually started a couple of posts, but something new would take place, causing me to wait. It was as if I was in the midst of a crazed chapter of my life, and there wasn’t an appropriate place to bookmark the story and post an update.
At this point I’m not going to spend much time on any particular event. Some of you may actually recall that in early September we still had our hopes set on a clinical trial at MD Anderson in Houston. The biggest hurdle I was facing was keeping my hemoglobin count above 9.0, which is the minimum for most of the trials for which I remain a candidate. We had had setbacks before, but at that time I had been given a blood transfusion which we hoped would boost my blood counts sufficiently such that I would measure above 9.0 at the time of the trial’s start, about 2 weeks from the day of the transfusion. Kim and I ate dozens of oysters (this was a treat), and I began dosing iron supplements. I left for Houston above 9; we were hopeful. But, despite having to undergo all of the pre-trial tests, including scans, vials and vials of blood, and finally a CT-guided biopsy, in the end I received news on a Wednesday (day before treatment) that my hemoglobin fell below 9.0 and I would not be able to start the trial. Believe it or not, this news was as difficult for me to accept as any I have heard since I started fighting cancer. My soul was crushed. Searching for other options at MD Anderson proved futile, as the investigational group could not find a study for which I qualified. Calls to Sarah Cannon for options weren’t much to get excited about either. Exhaustion just hit me hard.
This was probably a good place to bookmark the story and write a post, but the news was devastating to me. I needed some time to reflect and regroup. I didn’t want to post an update that amounted to: “thank you for your prayers, but it seems God’s answer was ‘no’.”
Instead, I texted the amazing man who is now jokingly referred to as my “local surgeon” with the news and asked for a recommendation for a local oncologist. He not only gave me a name, but he set up the referral.
With an appointment with a new doctor the following week, I thought I should wait to post.
It was a great visit with the new oncologist, as he had done his homework with my records. Wasting no time, the doctor set his team about pursuing a promising clinical trial sponsored by the NIH in Bethesda, Maryland. The backup plan, though, and one I was forcing myself to accept, was that at some point I would begin chemotherapy again, perhaps even the highly toxic, butt-kicking standard therapy that I had received back in 2013.
With so much undecided, I figured I should wait until I heard from the NIH before writing an update.
Meanwhile, I had increasingly been experiencing pain in my left leg due to the fact that the tumor was completely compressing the major vein (exterior iliac). Unfortunately, the pain was soon accompanied by swelling, which was both uncomfortable and disconcerting. So, thanks to a friend at a local vascular practice, I was fit into the schedule on Tuesday morning for a leg ultrasound. You know where this is going, right? Well, thanks to the extremely decreased flow of blood out of my leg because of the vein compression, that same vein now contained a blood clot stretching from knee to pelvis. Sigh. But, it was explained that this is a treatable problem, and I left the appointment with a prescription for twice-daily shots of blood thinners.
Wednesday night, though, boggles the mind. The evening transpired like any other, Kim and I watched a show on the couch and then proceeded to get ready for bed around 10pm. But, what started as some simple stomach gas pains, 30 minutes later was a swollen, shocking, foot-long section of my bowel protruding out of my stoma and laying across my stomach. This led to my first trip in an ambulance to the hospital for emergency surgery, performed, of course, by the previously sound asleep local surgeon. I spent 4 nights at Piedmont Athens Regional because he was forced to remove sections of both the small and large bowel.
On Friday I received a phone call from one of the admins at the oncology office. Unfortunately, I am not eligible for the study at the NIH due to the existence of my nephrostomy tubes. Still, even with time to kill at the hospital, I didn’t think I should write the update yet; I had a follow-up appointment with the oncologist where we would finally make a plan for the future. THEN, I’ll update.
September 30 – October 4
Guess what?! Nothing happened. I spent the whole week essentially in bed or on the couch recovering from surgery and elevating my left leg. Fortunately, the blood thinners appeared to be working, as the swelling in my leg began to decrease.
Which brings me to my visit with the oncologist last Thursday. Over the years, one of the things that I have often prayed about with my interactions with my physician is that they would consider me as an individual and not just as part of any general categorization. For example, the experimental immunotherapy that I received and which initially shrunk and then seemed to control my disease for over a year at Sarah Cannon in Nashville was ultimately scrapped because it didn’t help a significant number of patients. But if the drugs elicited an immune response in my body, perhaps we might see a positive response with other immunotherapies, even though confident solutions for colorectal cancer continue to elude researchers.
So, it was to my very pleasant surprise to hear my new oncologist suggest that we try an FDA-approved combination of immunotherapies before we resort to a standard chemotherapy. In a strange silver lining to the surgical cloud, I cannot have chemo for another few weeks, but I can begin an immunotherapy much sooner. So, after being off treatment of any kind since January and effective treatment for who knows how long, I will begin treatment again this Friday (Oct 11).
Please picture me placing a bookmark in some large tome of a book as I find myself at an appropriate stopping point in the telling of this story.
Dear friends and family, I am told so often about how many people are praying for me. I thank you with the humblest and deepest of sincerity, to the point of which I fear ever relaying bad news. But it is not in our control whether God says ‘yes’ or ‘no’ or even ‘not yet’. I honestly can’t imagine going back on the chemotherapy that was so difficult to manage and even left me with permanent nephropathy, which I imagine would get worse. So, of course, we pray that this immunotherapy, which I will receive in Athens, at home, and only every 3 weeks, will be effective in killing cancer cells in my body. However, statistically speaking there is a 50% chance that the drugs will also cause my immune system to attack tissues in my body that it should leave alone. This drug-induced autoimmunity can be quite severe and dangerous, and, as the doctor sagely pointed out, I’m not the same man I was years ago (i.e. how much more can my body take?).
Here’s my hope. In a couple of months time, I get a CT scan that shows the big, primary tumor (Sauron) has shrunk and there isn’t a sign of disease elsewhere. At this point, the drugs have not made me sick or caused me any issues of auto-immunity. My blood clot will be almost (or totally) gone with the compression of the vein reduced as the tumor has shrunk. I’m feeling better and looking forward to Christmas with family. It is at that point that I’m going to be convinced that all the bad news that I received in Nashville and Houston was just God shutting doors until I opened the one that kept me at home with my family.
But this has no bearing on my greatest hope, one that provides peace no matter the circumstances: it is well with my soul. Even if every person in the world were to pray on my behalf for a good outcome from the upcoming treatment, God can still say ‘no’. This of course sounds bad, but has no bearing on God’s character, particularly his goodness. I confess that I’m still learning to accept and trust him in this. But my security is in God asking his own Son to die on a cross with a promise to bring him back from the dead and then being true to his word on the third day when Jesus was resurrected.
My story is part of God’s story. I bookmarked here to tell just a part of it. If you’re still reading, I’ll update again in a little while. God’s taught me a lot through these recent hardships, and I hope to share that with you soon.
Note: the featured image is of the family atop the Space Needle. I wanted to use the picture of a shrimp head from our sushi lunch, but Kim didn’t like that idea…