I’m overdue for a check in.
The last time I posted, I was in the middle of a lot of soul-crushing setbacks. The first medication (Cabometyx) I took to stem the giant kidney cancer tumor inside of me had stopped working and had culminated in a rare but serious side effect called Pres syndrome. It looks, on the outside, like a stroke. You can’t talk. Half your body goes numb. Then come the seizures. Days of intermittent seizures.
I spent eight days in the hospital, and I don’t remember the first three. But the next problem with Pres Syndrome is that doctors can’t be sure that’s what it is until all other potential causes are ruled out. What does that mean on the ground? At first, they thought I actually was having a stroke. Then the brain scan came back clear. Except for some weird swelling in the lining of my brain, which looked to me like a handful of really wavy white lines around the perimeter of my otherwise calm skull. Those wavy lines had the next round of doctors convinced the kidney cancer had spread to my brain. They told me to call hospice. It was time. My insides shattered. I wasn’t ready for the end. Not yet.
But a few days later, I caught a break. Another day, another scan. This time, the lines were gone, so the neurologist could safely say it was Pres Syndrome after all. There were no tumors in my brain. Not yet. The cure? Stop taking Cabo and start on an immunotherapy combo that was approved for kidney cancer in April 2018.
So I started. And landed in the hospital for another five days, this time because of an unrelated infection. Most people, including me, don’t know that once you have cancer, you’re just as likely to die from pneumonia or the flu as you are from the cancer. Your body just can’t handle the deluge. But I managed to get through this time.
Still, the hospitalizations were hard on me. It took a long time to recover from the lack of sleep, the constant blood draws, whatever cocktail of chemicals dripped through the IVs, the illnesses that put me in there in the first place.
But here I am, four treatments in on the new therapy and I feel (mostly) great. I feel nearly normal, to the point that some days I honestly can’t believe I have terminal cancer at all. I’m taking the kids places. Food that tastes like food should taste, unaltered by damaged taste buds. The rapid weight loss has finally stopped. The sores in my mouth, on my hands and on my feet are gone. I can ride a bike for a mile and not feel like I’m going to pass out. I’m planning our annual trick or treat party and hanging spooky ghosts and spiders from the trees in the front yard.
I want to freeze time and play the last three weeks on a forever loop so that I can live in this bubble of normalcy and never have to face the reality of the stupid tumor in my gut ever again.
(If you must know, the immunotherapy I’m on is Yervoy/Opdivo. You’ve probably seen commercials, and the developers just won a Nobel prize). I’m not a religious person, but I pray it lasts. I hope the medication is working as well on the tumor inside as I feel on the outside. The thought of going back on another pill that makes me feel awful, that offers zero chance of a cure, is crushing.
Still, I know my disease is still considered incurable and terminal, that my next scan might show that the rogue cells have spread. I can’t plan for a long future. I can’t be fooled. I only have now, today, the days between scans.
But this bubble of lucky time of feeling good has raised some questions. Do I embrace it and keep pretending to be normal? Should I go back to doing what I did each day before I was diagnosed? Like, start editing the third book in the Guardians of Salt Creek series and planning its release? Why yes. I think I should. And I promise I will, as long as the good days last.