Drug reaction interrupts chemotherapy

Susan has been dogged by a persistent drug reaction that began with a big eruption in August along with an ER visit and now shows up daily in a more mild form. We initially suspended one of the drugs she took in combination with chemo, and have since dropped two more pain management meds to ease her system. Still, each day she gets welts and red blotchy skin on her trunk and extremities. They’re painful and itchy, but are relieved with Benadryl and Zantac.

When she was due to have chemo again several weeks ago; Dr Nghiemphu said we should wait until the rash clears completely before proceeding, if at all. Unfortunately, the reaction persists, so she may have had her last dose of Temodar.

The fact that her initial reaction so closely followed her chemo dose in August made it clear that’s what caused it. That type of reaction is typical of long-term Temodar use when a person no longer tolerates it. But to have a chronic rash each day for this long suggests another cause that for now remains a mystery.

Most brain tumor patients pass away before long-term drug reactions have a chance to occur, so we’re thankful to have such a problem. God has sustained her life and continues to work out his purposes along the way. We’ll have Susan’s next MRI and oncology visit after Christmas. Of course, we hope for continued tumor stability, and will discuss our options to resolve the mysterious rash.

Meanwhile, Susan continues her journey in remarkable fashion with the help of loving friends and family who care for her. She enjoys daily walks, still needs to rest a lot, and thankfully takes initiative to do things for herself as much as she can.

She’s constantly joyful. Joy is her natural bent, her first response, and no doubt a big reason for her survival. She’s incurably positive. Optimism and hope run deep in Susan, keeping her strong and stable. She’s spiritually enthused. She maintains a readiness to encounter God at any time; so spiritual songs and topics easily move her soul. She likes to close her eyes and drink in what’s happening around her, enjoying music or a sermon. And sometimes she’s just sleeping.

She’s also constantly playful, which probably wouldn’t happen without her joy, optimism, and fine-tuned spirit. But she loves to play at any moment – and her messing around with the kids and I are a sure sign she’s feeling well. Each of us has our lively routines we do with her. Most of them are precious and personal, and they help us stay connected. Here’s one I’ll share: lately she’s been fond of gripping my hand tightly when I help her sit down, then not letting go. She has quite a grip, but not one that can last when I tickle her with my free hand.

One night recently as I helped her into her recliner, Susan doubled over in pain, moaning loudly. She was obviously distressed and couldn’t talk or respond when I asked her what’s wrong. She continued as I asked her what happened, what was hurting. I couldn’t imagine what had happened so suddenly, so my mind was racing to figure it out. Just as my internal emergency alert system was fully engaged, she lifted her face from her hands and said “A-boo!” with a huge smile. She nailed me. She got 500 points for her acting, 500 for her timing, and a 250-point opportunity bonus.