Lately

Sorry it has been so long for me to post. For good and bad reasons, I haven’t had the margin to sit and type. Also, I absolutely don’t consider myself a writer, so these posts take me a while to write. I realize this overlaps a bit with Mallory’s previous post!

Since the end of June I have felt different cognitive challenges (dizziness, I can’t come up with a word I want, stopping sentences in the middle for no reason, calling my kids by the wrong name, etc.). While these are normal human experiences for us all at some level, they haven’t consistently been for me and I saw an increasing amount of struggles with them. It has been embarrassing and frustrating. In July, I met with the radiation oncology doctor and had a brain MRI with nothing definitive to show the source of these issues but had a 6 week follow-up brain MRI at the end of August that showed a lot of brain mets. The doctor said a couple hundred tiny ones. When I think about it, it is still so scary to think about the slow growth and progression of disease, particularly the change over those six weeks. That an MRI showed next to nothing one day and six weeks later showed widespread disease haunts and bothers me. What is this disease??

For the brain mets, he recommended whole brain radiation for 15 days, which I did. At Jason’s work. I don’t really have great words for that experience. “Nightmare experience” doesn’t really express it. I am overwhelmed with how smoothly it went. (To be clear, nothing about the staff or the doctor was “nightmarish.” Needing my entire brain radiated at Jason’s workplace was the nightmare). Jason’s coworkers I saw every day were incredibly kind, funny and supportive. But showing up for 3 weeks at that office to get radiation, not meet Jason for lunch or to swap cars, was anxiety-producing. I don’t know how you are supposed to walk through that experience. I did the best I could. Thankfully, each day I had empathetic, encouraging, lovely people there to get me through this. Their normalcy of this treatment was actually calming for me. I felt very well taken care of and supported, but also I wouldn’t recommend ever going there if you don’t have to go.

At the end of radiation, my radiation oncologist asked my oncologist about me getting back on Tagrisso (the targeted therapy drug from last year), so I started back mid-October. My oncologist said that Tagrisso will be an “underlying therapy” to the chemo I’m on and that she’s good to keep me on it as long as it doesn’t interfere with chemo and keeps working in some areas of my body. I feel a lot more cognitively clear than this summer and am thankful to have dropped some side effects for now.

The time since finishing radiation was a time of slow decline and then gradual increase in energy and clarity. I was pretty depleted and tired until the week before Thanksgiving and I feel like I’ve since stabilized to a new normal again. I get a little more tired but can make it through most days fairly well, and with an afternoon rest time (if I can get it). I’m glad to be feeling stable for this season. The last two Christmases were hard, filled with uncertainty and fear. This December has been easier, lighter, and felt more normal.

Another thing I want to share is from Advent. Our pastoral intern Jonathan Allston mentioned something from the pulpit during church a few weeks ago. He said that Jesus is waiting for us too. I had never thought about it and asked him later. He said in a text, “Like the imagery of the wedding Tim talked about yesterday, Jesus is waiting for that day, waiting for us, just like we’re waiting for him. He longs to make us whole and spotless and become his bride. So it seems there’s the sense of Jesus waiting for us and anticipating that day. Also, if you take the concept of us loving God ‘because he first loved us,’ I think that would apply to all our desires and longings for him. Our longing for him isn’t sourced in ourselves. We long for and wait for Christ because he waits for us. Our waiting is a dim reflection of his.” I have really loved this explanation. Sounds legit to me. I have enjoyed discussing it with others and thinking about when I have a quiet minute to think my own thoughts (which sometimes happens these days!).

Last December 23, I started the aggressive, wearying chemo (Taxol and Carboplatin). There are lots of confusing, not understandable parts of this cancer journey for me. Like all of December last year and the shift from “a-terminal-diagnosis-with-a-daily-pill-that-can-stop-this-freight-train” to “the-pill-isn’t-doing-its-job” and how much that has colored this year. But I have loved the picture that Jonathan’s words paint for me and how much it communicates God’s love and tender care for me and my family. It hasn’t removed the fear of dying/slowly dying that I have, but it gives me such a solid reminder of God’s hand in my life and experience. I don’t understand what He is doing, but knowing that Jesus is waiting for me makes me okay to wait for answers and for Him.

My dear friend Sarah Stewart texted this book excerpt to me a couple of weeks ago and it has been hugely helpful and oh-so-accurate for me!

“Christians faced with terminal illness or imminent death often feel they’re leaving the party before it’s over. They have to go home early. They’re disappointed, thinking of all they’ll miss when they leave. But the truth is, the real party is underway at home—precisely where they’re going. They’re not the ones missing the party; those of us left behind are. (Fortunately, if we know Jesus, we’ll get there eventually.)…Every person reading this book is dying. Perhaps you have reason to believe that death will come very soon. You may be troubled, feeling uncertain, or unready to leave. Make sure of your relationship with Jesus Christ. Be certain that you’re trusting him alone to save you—not anyone or anything else, and certainly not any good works you’ve done. And then allow yourself to get excited about what’s on the other side of death’s door.”