This Is the Day the Lord Hath Made; Let Us Rejoice and Nap in It

Plus: Stair Solutions and Treatment Updates

The perfect image to describe my mood.

In the past few days, I’ve gotten several messages along the lines of: “Have I missed an Incurable post? Do you still have my email? What’s going on? Is there an update?” And the short answers are: “No; yes; lots of napping; and yes—as soon as I stop napping and post it.” 

To rewind a bit: at the end of June. we celebrated Andrew’s birthday. He really wanted to go out to eat rather than order take-out, and I decided this occasion was worth navigating the treacherous steps. My sister was still here, so between the five of us we managed to get me and my rollator glider and my wheelchair down the stairs and to the car. And we had a delightful outing! It was such a success that I thought we should do this more often. 

I didn’t count on the day after the outing, however. I was exhausted. The stairs still felt nearly insurmountable. In case you were wondering, we’ve never heard back from the people who were supposed to give us a quote on a chair solution or from the council about other options to address our stairs and entrance. (My local friends will probably be unsurprised to hear this.) The next several days were a mixture of sadness at missing my sister, who had gone home, soreness from the extra exertion, and sleepiness in response to all of it. 

We have an elderly miniature schnauzer who mostly spends her days napping, with her only activity moving from one napping location to another. I felt like I could rival her napping capacity. 

The Stairs Solution

You might recall that my previous occupational therapy assessment did not spark joy. In fact, it was one of my hardest days since the diagnosis, since the summary judgment seemed to be that I should stay safely in my chair unless I had an essential reason to get up. I was fragile and disabled and should not even attempt exercise or additional movement and certainly not stairs. [Fun fact: the therapist’s name was Joy. I call her Not-Joy.]

In the subsequent weeks, I had additional questions for Not-Joy. Should I be evaluated for a back brace? Were there any therapists who could work with me on proprioreception? What about some more ideas for solutions to the stairs? I felt like I might be fragile and disabled, but don’t even fragile spinal cord patients benefit from some kind of physical therapy? Finally, Not-Joy told me that she was moving to another position and she would pass all this along to her successor. 

Last week I heard from the new therapist, Jenny, who arranged to come over on Monday to do a new assessment. (I later learned that she had talked to my beloved district nurses first, who encouraged her to redo the assessment.) Jenny took one look at my rollator glider and frowned. She wanted me to try a basic frame walker instead. I couldn’t manage a frame walker with Not-Joy . . . but now I was able to totter across the room fairly well. Then Jenny produced crutches (the arm band kind) for me to try. Like Sarah in Genesis hearing that she would have a baby at her advanced age, Dave and I both laughed at the idea that I’d be able to maneuver on crutches. Jenny the Angel was undeterred: “Let’s try and see what happens. I won’t let you fall.” And just as baby Isaac was born to Sarah, I was able to shuffle on my crutches from one end of the house to the other. 

Jenny the Angel also had a solution for the stairs. Not a lift, not a chair, not a slide—my own two feet plus the crutches. We worked on the technique inside, and she declared that I looked fine and dandy for navigating our outside stairs, too. 

That evening, our family went to a movie: I went down the stairs on crutches, walked into the theater on crutches, sat in a theater chair, walked back out on crutches, and went up the stairs on crutches. A week ago, this seemed like an impossible feat. 

Jenny the Angel said I would know whether I had pushed too hard if I was especially fatigued the next day. My exploits with my new crutches had indeed been a bit too eager—I was exhausted the next day and needed even more naps than usual. But by the day after that, I was back to feeling normal. Now instead of being instructed to stay in my chair as much as possible, I am supposed to get up as much as possible—the hope is that the over time the muscles in my back can strengthen enough to support my weakened bones, as well as my legs and feet getting stronger. 

In fairness to Not-Joy, when she came for my assessment I was incredibly weak and unstable and a huge fall risk. She didn’t expect me to improve—she clearly indicated that she expected me to decline further. 

Miracles come in many shapes and sizes. Many people prayed and cheered for my feet to improve. (My friend Annie and her prayer team were praying specifically for my toes to regain sensation.) And now those nerves have slowly started to repair: I’ve regained most of my sensation, my proprioreception has improved, I can balance independently for a short duration, and I have enough strength and stability to manage stairs on crutches. When I talked to the doctor this week, he said I might see even more improvement; since nerves repair slowly, we might not be at the endpoint for how much sensation and mobility I can regain. Thank you, Jesus! And thank you to all who prayed and cheered and sent thoughts and music—please continue. Right now my back tires very quickly, so I can move around for only a short period of time. My left foot and leg need to improve in strength and stability. I still need to be very careful not to fall. But I am so grateful that instead of inevitable decline, I have the possibility of gradual improvement. 

Treatment Update

Cancer treatment started today! I am taking an aromatase inhibitor, which will hopefully starve the cancer of its tasty estrogen so that it can’t grow. In a few weeks, I’ll go to Ninewells to review my blood work and start my targeted therapy medication. Together, the two drugs are intended to slow the growth and spread of the cancer—and even shrink the tumors while the bone strengthening medication helps to rebuild my weakened bones. I’ll be on these as long as I can tolerate them and they are working. The prayer requests are that I will not have significant side effects and will be able to tolerate the medications well, and that they will be effective in shrinking the tumors and preventing any new growth or spread. 

---

Animal inspiration for me on crutches.