Memorial Day Weekend and a Scary Setback

Monday night this week, the medical update I was planning to write about got a lot more complicated. Around 11 pm, I rushed downstairs to quickly nurse Pippa before hopping in the car to follow the ambulance taking my Christopher to the emergency room. Chris’s sister Anne and her young daughter came over at a moment’s notice to stay with Pippa while we went to the hospital—a muscle spasm in Chris’s leg completely incapacitated him and sent his pain level up to an 8 or 9.

A little over a week earlier (Friday, May 20th), he had his second round of chemotherapy. This time the side effects were significantly more manageable. He felt slightly nauseated, but the right dosage of medicine meant that he was able to eat normally without skipping any meals. While he did have some fatigue, an afternoon nap the three days following chemo seemed to be enough. We were able to go on walks and resume more normal activity. Unfortunately, any joy we had in successfully navigating a week of chemo was swallowed up by pain in a rib under his shoulder blade that flared up, making it nearly impossible for Chris to sleep at night or even do basic things like lift a glass of water. Sigh.

So back he went to radiation for five days, which meant skipping a week of chemotherapy. He got two days of radiation in before Memorial Day weekend, which took the edge off the pain enough for us to join the rest of his family at the lake cabin in northern Minnesota. We had a great time taking the boat out and reading, playing Cribbage (mostly Chris and his dad J), going on a two-mile walk, and sharing lots of time with family. Chris even went out on the jet ski with our nephew Isaac.

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Poor Pippa–who wants to wear a cheek-squishing life jacket AND a big coat?!

By Monday morning, though, a minor twinge of pain in his leg turned into what felt like a pulled muscle, making it hard for him to walk. Fortunately, his painkillers and muscle relaxers allowed him to handle the 5.5-hour drive back to Sioux Falls. Upon reaching home that evening, though, the pain from the muscle spasms was crippling and intense. Seeing my husband in so much pain was scary and demoralizing. It’s hard to feel hopeful and confident in God’s love when you’re just so very weary and the pain is so severe. Cancer pain can be especially terrifying because of all the attached implications—i.e is the pain caused by the cancer spreading?

Words from my wise mother’s text helped sustain me through the next several hours: “Now is the time to gear down and determine not to project out to a dark place. Instead, in a disciplined way, think only of the current day and no further. Do what the present day demands and that’s all…Draw from him [God] every ounce of grace and strength that each day requires.” So with a prayer for God’s help I determined not to dissolve into tears, not to allow this newest scare to destroy our underlying hope, and to step into confident action mode. I called the ambulance, gathered a few things for the hospital, fed Pippa, gave Anne instructions for her care, and began following the flashing red lights to the emergency room. A spectacular purple, rainless lightning storm stretched across the sky as I drove and reminded me of God’s great power. To be honest, it also made me feel terribly small and I didn’t feel especially encouraged, haha J. But it was beautiful and I appreciated the gift of beauty to lift my thoughts out of our circumstances.

Meanwhile, the EMTs managed to get Chris in a more comfortable position, and Chris was able to have a great conversation with one of the guys on their team…ending with Chris praying for him and for his encouragement. I’ll save the full story for another time. I just have to say how much I admire my husband’s heart to care for people even when he’s in pain.

At the ER, Chris had several tests to rule out possible causes for pain. Finally, after a CT scan, the ER doctor told us that one of the original cancer spots in a pelvic bone had spread to the muscle and was causing the pain. The word “spread” landed like a rock in my stomach. Gear down. In a disciplined way…do what the present day requires. I felt the fingers of my heart tighten their grip on our fragile hope and I shifted my focus to what steps were needed to help my husband get comfortable. Add another pillow; ask the nurse for a different pain med. Around 4 a.m., we were admitted to the hospital and managed to sleep for an hour or two.

The next day, Tuesday, brought fresh perspective and new information. We met with our radiation oncologist, who assured us that the spot hadn’t actually spread, but had been there all along and would be treatable with another round of radiation. While the pain was still disconcerting, just knowing this wasn’t new cancer was a relief. In the light of day, this hospital experience felt more like a “manageable setback” rather than the overwhelming, hope-destroying specter it was in the night. Unfortunately, though, additional radiation would mean another delay in chemo/immunotherapy.

Today, Wednesday, began with Chris finally able to stand up on his own and taking significantly less pain medication. The dramatic improvement felt very encouraging. He began radiation, and after talking with our genomic oncologist’s nurse, I learned that Chris could actually start immunotherapy (called Keytruda) after all while undergoing radiation, we just needed our primary oncologist’s approval, which he gave. Now we’d only have to delay the chemo one week, but not the immunotherapy. Such good news to start the day!

We end the day now feeling tired but peaceful and thankful for the many new mercies God gave today. Chris’s pain has dramatically lessened and he’s able to get around. We hope he’ll be discharged tomorrow.

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Chris is looking forward to seeing this little Pip again!

One of the highlights of my day today was discovering one of my former students who I helped coach on the TCA girls’ soccer team, working on our floor here in the hospital. This girl put a big smile on my face! Thank you all again for your prayers, kindness, and love!

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I love this girl!

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