Sunday, August 11, 2019

How We Got Here


You might have been shocked to learn this week that Levi has stage four kidney cancer. We were surprised, too. 

After all, Levi has run marathons and climbed more mountains than I can count in the last several years. He exercises every day and eats a healthier diet than I would ever attempt. But there were signs for the last year and a half that something wasn't right. Unfortunately, it took over 15 months to arrive at the root cause. Here's the backstory for journaling purposes before we launch into a new chapter tomorrow. 

In April 2018, Levi ran the Oklahoma City Memorial Marathon. His training had gone well, and he planned to finish in under four hours. But on race day he struggled to finish, crossing the finish line around the 5-hour mark. Afterwards, his recovery was terrible. He spent five days on the couch feeling like he had the flu, and three bags of IV fluid didn't touch it. He had run marathons in the past and knew this wasn't normal. Finally we went to urgent care where they drew blood and discovered he was seriously anemic. He was prescribed iron supplements and told to follow up with his primary care doctor.

Once Levi saw his PCP his iron level had returned to normal, so the doctor reduced his dose by half and told him to have blood drawn again in a few months. When that time rolled around his iron level had tanked again, leading his doctor to believe he must have some kind of internal bleeding causing the anemia. He sent Levi to a gastroenterologist. 

The GI doctor ran tests and could find no internal bleeding. He passed Levi off to a hematologist. She ran additional tests and found that his inflammation markers were high. Her guess was that Levi had an autoimmune disease. 

Of course I went straight to Google (I know, I know) and started dissecting all the autoimmune diseases to see which one fit Levi's symptoms. Along with anemia he had developed back pain and fatigue. We settled on lupus as the likely cause. Now we had to wait for an appointment with a rheumatologist. 

While waiting for that appointment Levi developed shortness of breath. He was still running regularly but had gone from running 8-minute miles to 14-minute miles using the same effort, and he had to stop every block or two to catch his breath. His labored breathing was starting to keep me awake at night by the time we saw the rheumatologist. 

When we visited with the rheumatologist she agreed that most of his symptoms corresponded with lupus, but she was especially concerned by his shortness of breath. She recommended a chest x-ray. We circled back around to Levi's PCP 15 months after we first saw him, and he ordered the x-ray. 

It turns out the pleural space on Levi's left lung was full of fluid. The doctor guessed it was a type of pneumonia that had been festering for a long, long time. He said Levi would need a CT scan to determine the best way to drain the fluid, and he referred him to a pulmonologist. 

Levi went in for a CT scan that was just of his chest area, and we were shocked to learn that the scan not only captured the fluid, but it also showed a softball-size mass on his left kidney. The doctor said not to worry, that it was likely benign, but Levi would need an abdominal CT scan to get a better picture. 

He went in for the abdominal CT the same day he had a thoracentesis to drain his lung. They drained almost three liters of fluid. No wonder he couldn't breathe! Then, later that day, we got news that the mass on his kidney looked suspiciously like cancer. We were still hopeful it wasn't, but our minds started swirling at the possibility. We scheduled an appointment with a urologist as soon as possible. 

After a very long weekend, we saw the urologist who told us it was definitely cancer. Not only cancer, but stage 4 cancer. While this is a scary term, we were relieved to learn that this only means that the mass is larger than 7 cm (his is 22 cm!), and that it has moved to at least one other organ (in his case the left lung). This was the most surreal day. 

Since then more scans have shown that the cancer has not spread to his brain or bones, so it seems manageable to us at this point. We are very hopeful that he will make a complete recovery. 

After Levi's diagnosis (which was only a week ago!), we have been inundated with so many generous acts of kindness that we can't even comprehend their magnitude. While we are so appreciative of the physical acts, monetary donations and kind words, we are most grateful for your prayers. Levi's aunt had the great idea to pass out carabiners for people to remember to pray for Levi. Through these pieces of climbing gear we can be "linked" as one group that is assaulting the throne of God on Levi's behalf. Please join us by clipping a carabiner on your keys, purse, belt loop, etc.

Many people have asked how we're dealing with this, and we're doing really well, considering. We are tackling it one step at a time like any of the many projects we've done together over the years, and it helps that neither of us are very emotional people (enneagram 1 and 3 for those nerds - I'll let you guess which of us is what number).

As Levi has said, this is just another mountain to climb. I love the verse a friend shared with me tonight: "Truly, I say to you, whoever says to this mountain, ‘Be taken up and thrown into the sea,’ and does not doubt in his heart, but believes that what he says will come to pass, it will be done for him." - Mark 11:23

Tomorrow we have our first appointments at MD Anderson. We have no idea what to expect in the coming months, but here we go, one step at a time. We're ready to move that mountain.



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