The Paradox of Pain

Or: Is it good or bad when I feel good or bad?

The last day of radiotherapy treatment has a twang of bittersweetness to it. You’ve been in this same place, seeing these same people, for days in a row. By now, my crew of tumor-blasters know how to get me in position on the table—they know that I like to get on from the left side, and that I need the high bolster, and that I can lean back if I move my right leg a certain way. When they lower the table after the session and I say, “I’ve enjoyed my ride on the tumor-blaster today!”, they nicely pretend to laugh as if they haven’t heard every lame joke a thousand times before. They say they love my yellow Converse and my American accent. 

It’s like an intense summer camp romance—I even got a tattoo with these people! And then you walk out the door, and you might never see them again. In fact, you hope you never need to see them again.

The tattoo I wanted to get in 2021 …

The tattoo I actually got in 2021. My tumor-buster tattoo artist said he didn’t do pandas.

Finishing radiotherapy is also bittersweet because it had definition and clarity. Duration: Five treatment sessions in seven days. Goal: Shrink tumor and relieve pressure on spinal cord. Now we move into a phase with less certainty. 

More Pain or Less Pain?

The effects of radiotherapy continue after the treatment sessions, which is great because I love the idea that while I sit in my chair and drink coffee, the tumor in my spine is continuing to shrink away. But it also means that the inflammation and irritation from the treatment continues, which means there’s likely to be an increase in pain. And that makes it feel tricky to know exactly how to interpret the pain experience: 

-       The objective of this treatment is to reduce my pain and increase my mobility. So a reduction of pain is a good thing. 

-       If the radiotherapy is continuing to work over the next week or two, my pain might actually increase. So more pain is a good thing (or at least an expected thing) if it means treatment is working. 

-       But my treatment team [shout-out here to the specialist oncology nurses!!] are being very proactive in helping me manage any increase in irritation pain, so less pain is a good thing. 

-       But if I’m increasing pain management to deal with the radiotherapy irritation, I don’t really have a clear sense of how effective the treatment has been to reduce pain. 

So for now, in this phase of “What Does My Pain Mean?”, I’m trying not to overinterpret the presence or absence of pain. 

Operation Move

In addition to the goal of pain relief I have the goal of more mobility. I need to be able to be out of my chair more, moving around more, gaining more strength. Yesterday began Operation Move, and it was a promising start. My pain was very manageable, which allowed me to be putter around the house in more and longer bursts. I was able to do a few exciting activities such as carry things from the living room to the kitchen. (I feel a bit like Westley in “The Princess Bride.”)

There’s uncertainty in Operation Move, however. I have to try to gauge moving more—but not so much that I increase the irritation in my spinal cord. I need to walk around—but I have to step gently. And then there’s the question of my bones and how much they can handle right now, since we still don’t know the extent of the issues there. 

The Interim

The other uncertainty is how long this phase will last between finishing radiotherapy and what will happen next from the results of my CT scan today. This afternoon we’ll drive to Perth, I’ll have the scan, and then … we wait. 

---

Love Bombs and Joy Kernels

Here is where I start to run out of words to describe all of the love and support and encouragement and prayers that have been poured over us. I have felt love-bombed in the best possible ways as you marvelous, delightful people have showered me with your gifts. To name just a few: photos and videos of your insanely adorable children, powerful words of prayer, delicious meals and homemade cookies, messages and notes cheering for us, sharing your hilarious pet photos and stories, hours spent in research to help me prepare for appointments, offers for margarita dates, listening when I called or emailed, offers to help clean my house or sew on a button, and so very much more. When I have felt tired the past few days, these nuggets would arrive and I can feel the scaffolding of love and support underneath me. You all have been the hands and feet and love of Jesus.

I’ll share one photo: This is my gorgeous niece and sister-in-law in their happy yellow shoes. In keeping with the bittersweet theme, this is a happysad one for me—those Converse and what they represent and these people I love so much fill me with happiness … and yet I miss seeing their faces in person (it’s been almost two years). I’m reminded that joy doesn’t mean the absence of sadness. How they coexist is mysterious and sacred and beautiful.