Photo by Amy Louisa Schaefer
The mysteriousness of this illness is perhaps its most frustrating, yet compelling feature. If you were to look at Wolfgang here at home, only the trained eye—someone who knows him well or has worked in the medical field—might realize that he is gravely ill. He rides his bike. He still cooks, writes every day and takes pictures. He answers e-mails. He pays bills. He shoveled snow last week at six o’clock in the morning.
Of course he has a bald head. But in this day and age, it’s hip, not a dead giveaway.
It’s when you look more closely at our everyday routines that you realize just how deeply this illness can slice through your life. For instance, I often have to repeat my sentences for him to be able to catch them. This has nothing to do with deafness caused by years of living together as a married couple. The medication during first-line chemo damaged his fine nerve endings, causing both hearing loss and numbness in his fingers and toes.
Likewise, I cannot understand him when he speaks while rinsing a dish off in the sink. The primary tumor in his lung has damaged a nerve leading up to his vocal chords, making him hoarse and unable to speak above a whisper since September. This means he no longer reads to the kids before they go to sleep. It means that when he raises his voice at the kids, nothing more than a croak comes out. Needless to say, his authority is undermined—in a pinch, the kids don’t take him quite as seriously anymore.
The hearing loss and hoarseness make it nearly impossible for him to talk on the phone.
Due to a slowness of reactions and the risk of epileptic seizures, he has not driven the car since February.
When we tried to whittle down the trunk of the Christmas tree in December, he had to turn the handsaw over to me because he was so short of breath. Utter frustration.
Perhaps most mysterious of all is that despite the metastases throughout his body, some of them large, he is—thankfully—not in any pain.
Yet it’s the unpredictability of cancer and its ills that make it so nerve-wracking. Had Wolfgang has a stroke, say, the damage would already be there. We would know that if we tried this or that, there might be improvement. That every regained ability could be permanent. But with progressive cancer, it’s the other way around: you never know what’s around the corner.
In life, on a good day, that might be fun. With cancer, it’s treacherous—every step of the way.