Sharks, Shooting Stars, and a New Way of Winning

Sharks, Shooting Stars, and a New Way of Winning

We were blessed to be at a little beach cottage this week as a family—the one trip this summer, and just before taking Ella to college next week. The boys were boogieboarding amid schools of fish when I saw a large school jump nearby. I called them to the shallows, and they watched a shark casually swim by just feet away.

A day later, we brought our chairs down at midnight to watch the Perseid meteor shower. We set up chairs in the sand, feeling the warm Gulf breeze and listening to the waves on the shore. We talked quietly, looking up and calling out every few minutes when a brief streak of light flashed across the night sky.

On the hottest of afternoons, we retreated to view the blockbuster Odyssey and dove into an animated debate about the changes from the original text and the cinematic techniques, and I smiled at the discovery that my children are starting to surpass me in cultured perceptions.

Another day, we putted our way through a dinosaur-themed mini-golf park, laughing and competing at each hole—right until I bashed my head on a fiberglass velociraptor. I had a huge Band-Aid on my head for a day. Mia thought it looked like a square yarmulke. Shalom.

Memories are being made. Family is together before we let go of Ella into the next step of life as a college student. We are about to change as a family.

Mia is now dual-enrolled at Calhoun, about to start her first in-class experience there. Along with Mia, Mason, Colin, and Brenden are starting a new co-op experience each week—still classical in framing, but in a new environment with different pacing. More change.

Karly is continuing to balance work and homeschooling. It’s challenging. We are working through the changes, helping the kids to become more independent and accountable, but it’s a hard schedule.

As for me, this summer has brought some substantial changes as well. Since June, several events have happened regarding my health:

• I had a full round of scans: CT, MRI, and PET. They determined that each of the four tumors—one in each lung and two in my liver—had all grown slightly but significantly and consistently over the last six months.
• We discontinued the trial of CUSP-06 at Sarah Cannon due to the continued slow development of cancer in multiple locations.
• To treat the two lung tumors, I received a round of SBRT radiation in July to each lung. We will scan again in a couple of months to determine the results.
• I met with my surgeon again at Vanderbilt to determine the viability of doing Histotripsy on the two newly developed tumors in my liver. This was successful last year for a tumor in my liver, and an ultrasound prescreen looked good. But we are back to fighting the insurance company to get this procedure approved. It is likely I will have to push hard, contact multiple people, and go through multiple rounds of denials dragging out over weeks before I can convince them again that this treatment is better and cheaper than surgery and that my doctor, a leading specialist in his field, knows what he is talking about. (I am processing my frustration.)
• Finally, I am now back to a more aggressive form of chemotherapy called Fluorouracil (5-FU). (Yes, I am taking a chemo that is literally labeled FU. I am deeply amused.) I am on a two-week rotation: I go in on Monday, get pre-med IVs for two hours, and then get hooked up to a mini-pump for 48 hours that I bring home. The fatigue and nausea are back, and a weird sensitivity to cold, and I get the added bonus of dragging Daryl around for two days. (Daryl is what the kids named the mini-pump man-purse that I sling-pack around. We are adding googly eyes to it next week. Laugh or cry, I choose laughter.)
• One last prayer request: The benefit of being on a trial is that the treatment and some of the scans are covered by the trial. We were able to manage some of the costs from earlier this year. Now we are picking up the burden again with additional co-pays, scan costs, and doctor visits. Please pray that we continue to manage the financial burden wisely.

All this stuff has happened in the last six weeks. Some of it is genuinely good—it is a multi-treatment strategy to attack tumors using the best specialized methods for the part of the body affected. But it has also reinforced the idea that this is a battle with limited treatment options and limited chances of success.

In the middle of all this, there was a side comment by one of my doctors that haunted me. “If we do nothing, you only have six months.” It was the first time a timeline had been mentioned. And truth be told, this has been three years of battling cancer almost to the day. Not just any cancer—cholangiocarcinoma. I am already beyond the odds by God’s grace.

So here is where I am: Some want to say that winning against cancer is curing the disease. I can’t tell you the number of people who have contacted me to tell me that their natural supplement, their parasite-killing drug, or some organ extract is going to eliminate and CURE my cancer. The Europeans do it one way, and deep in South America is the answer. It’s the government keeping it secret, or a company that killed the competition to keep me on chemo.

But here is one thing I have learned over the past three years: Chasing your fear to find the answer to the wrong question does not lead to a real victory.

Winning is not trying to cure a cancer that currently has no cure. Hoping that the next scan is clear, the next blood test is negative, or the next miracle is coming just sets you up for crashing disappointment. And you miss what God is actually doing in your suffering.

Winning is the victory in Christ that promises eternal life, taking away the sting of death. Winning is getting all the best specialists to do their part and give me more time with my family. Winning is defined by God giving courage like daily bread, knowing that He has entered into my suffering to walk with me in compassion, even when I do not know why I have to walk this road.

Winning is maturity in adversity. Winning is resilience when crushed.

Winning is the memory of the chill I felt when a predator passed my family in the shallows. It’s in the immense wonder of the midnight sky while holding my son’s hand. It’s sharing great stories. And it will be in the tired but bright chatter of my children riding home in a big red van with 212,000 miles, looking forward to our own beds. Winning is in the time granted as a gift, and the attitude of being present in this beautiful world.

I pray for a cure. I do. And I am doing hard work for it. But I already won yesterday, and God promised tomorrow, so tonight I will sleep well.

At the end of the day cancer has never had a chance of claiming victory over my family, Christ eliminated that on the cross.  When you keep running into broken expectations, or painful circumstances, or an unexpected challenge, remember that God has a path to the solution.  It just may not look like what you were hoping for or expecting. It may look like a deep valley with long shadows.  But beyond that valley are rich green fields and clear still waters. And maybe a beautiful sunset.