Kristin’s Diagnosis: Lymphoma, Lung Cancer or Sarcoidosis?
I started this blog back up a couple months ago after years of silence because there were so many things that God was teaching me. We were in the middle of starting a church with a vision like none other I’ve seen before. I was excited to write about the ups and downs of birthing a millennial reaching church. I was excited to share leadership learnings I’ve gleaned from the corporate world over the last decade and thoughts on how that experience is translating in the church context. I was genuinely excited to write again. It felt like we were on the brink of something new and I wanted the world to hear.
I didn’t get very far with my fancy new blog because only weeks after starting it, Kristin got sick. Then she got sicker. Wait…is this a joke? This isn’t supposed to be what is happening in this season of my life!
I really didn’t think I’d be writing about my wife having an incurable disease anytime soon….but I was wrong.
The Road to a Diagnosis
It all started with fatigue, raised lymph nodes and itching in October. First the doctor thought she had lymphatic cancer. He sat us down and warmly – but clearly – told us that he was pretty sure that we were dealing with cancer. Symptomatically it was a perfect match and we made appointments with cancer doctors and everything, but after 2 biopsy surgeries, they could find no cancer. The surgeon calls us and tells us that in his 23 years of experience he was totally sure we were dealing with lymphoma. He added that he called the pathologist himself, because the results were hard for him to believe.
In the following weeks, things got worse and she began experiencing a vague shortness of breath. She needed to take serious breaks after doing simple activities. Things spiraled down until we ended up in the hospital the week before Thanksgiving. She was unable to walk, barely able to speak, running a high temp and struggling to breathe. We were struggling for answers.
One night the doctor pulled me out of Kristin’s hospital room and took me back behind the nursing station to a computer screen. He pushed a roller chair my way, asking me to sit. “These are pictures of Kristin’s lungs” he began. “Each image is a slice looking from the top.” I appreciated the kind and detailed explanation, even though I’m all too familiar with CT scans and such. He showed me an area he called “infiltration” in the bottom of her lung. There was a pretty clear picture of a dense mass with inflammation all around it. “This part right here” he said “this is why we think Kristin has lung cancer.”
Kristin has lung cancer?
I mean, the biopsy was scheduled for the next day, so I was trying to not put too much stock in the scans, but it sure looked that way from my nursing station roller chair. I couldn’t shake the thought that if we played this scenario out by the numbers – if we look to the statistics – my wife is most likely going to die of cancer in the next few years. I will never forget the feeling in my chest as I walked outside the hospital that night and wept. But the same night, while my mind was wandering into all the what-ifs, God was speaking to Kristin in a remarkable way. A way that burned a sense of peace into her heart that she hasn’t wavered in, to this day. I can’t wait to tell you that story!
The next morning as we wheeled Kristin’s bed down to the operating room for her lung biopsy, her smile was unburdened; her eyes sparkled with a penetrating confidence and her voice was quiet and comforting. I kissed her head, thanked her nurses and exited to the waiting room, a bit less comforted than she.
Three hours later the surgeon finds me in the waiting room. He grabs my arm and tells me that there were tears in the operating room as the pathologist announced to everyone after multiple biopsies he could find no cancer!
What he did find however, was something called non-caseating granulomas. This type of growth is indicative of only a few diseases and only one thing that matches Kristin’s symptoms. Kristin was diagnosed with an incurable disease called sarcoidosis.
Where are we today?
There is no cure for sarcoidosis and in some cases it is a devastating disease. More often though it is manageable with treatment. In many cases it can be kept at bay after its under control. The first few days seemed to feel like she was getting better. We left the hospital with some answers on Thanksgiving day and she improved for about a week at home – able to walk a bit, talk a lot and sleep normally. Unfortunately, the improvement didn’t last. Today, we think her lungs are probably improving but other symptoms are not and the doctors don’t seem to think they match the disease we thought we saw in her lungs. Her muscle fatigue and weakness is unreal; she has lost her ability to walk more than just a couple steps and sitting up for any amount of time is a real challenge. If you can imagine, we are eating with plasticware, because regular silverware is too heavy. We see new doctors each week and have a few key tests on the horizon. The lung doctor (who runs point on sarcoidosis) is “perplexed” with all of this. Thankfully my hope isn’t only in the doctors 🙂
In the midst of this, God is teaching us beautiful things. Some days our hope is renewed in him; other days though, are terrible and discouraging and we aren’t as strong. I’ll write some of those stories soon, but I needed to write today because we haven’t been so good at sharing the details and I’m hoping you can pray with me. Kristin is getting an MRI right now. I’m sitting in the waiting room of my previously frequented diagnostic imaging center adding the final words to this post. Sarcoidosis can impact just about any organ in your body, and with all that’s going on we have to make sure everything is clear in all her organs, particularly her brain.
God is good, he really is. Somehow this will work out for the good. It’s pretty cool to hear Kristin remind me of that. I do know that God uses these types of things for incredible good. I’ve seen it first hand and it has been beautiful – painful, but beautiful. And listen, it took Joseph like 15 years to figure out what God was doing behind the scenes in his Old Testament drama. We can hang in there at least till 15 weeks 🙂
Anyway, for now, I’m just asking you to pray with me. One day at a time. Really praying that there are no problems with today’s brain MRI. We are hopeful that this shall all pass soon. Whether it does or doesn’t, God is still good.