This is not a happy post.
It’s really difficult to stay hopeful in the face of a disease that you can’t stop. Not the steroids, not the glass of water you bring, not the love you constantly share – nothing stops it from getting worse each day. I feel like I’m holding my hands up to block a thing that has no form. It just goes through me and around me and keeps making things worse.
We had to delay Steve’s biopsy because he had been on daily aspirin for years. He only stopped taking it the Sunday after his diagnosis. So the doctors said we had to wait a full 10 days before doing the biopsy. The risk of hemorrhage was too great if we didn’t wait. That’s why they didn’t do it the next day. That’s why we’re watching this disease progress moment by moment.
Tomorrow is finally surgery day. We’re both anxious for it to be here and dread its arrival. For over two weeks I feel like I haven’t been able to see past tomorrow. Just get him through surgery, then we can tackle the next hurdle – treatment. The biopsy will give us pathology. Pathology will dictate treatment. Treatment will hopefully stall the growth of the tumor.
The miracle would be if it shrunk the tumor into nothingness. That’s what we’re hoping for. That and that his memory and language abilities return.
To steal away words and language from a man who was so good at speaking and telling stories that people paid him to do it every day is a monstrous crime. I choke back so much as I watch him struggle. The injustice of it burns me raw.
To steal away the names of people who love him and who he loves is another sin against him. His network of supporters is so huge because of who he is, because of his generosity and kindness, because he shared himself so freely. The names slip out of his hands like sand. He sees faces and goes blank.
He’s also fully aware of what’s happening to him. He feels the wrongness so deeply. He apologizes to me every day and every day I tell him it’s not his fault.
He still knows how to say, “I love you.” The tumor can’t have that. We say it to each other so many times in a day that I’m sure he can’t forget them all. I feel like we’re trying to plug the holes in a sinking ship with a million I love yous.
The MRI yesterday was hard on him. Even walking from the car to radiology was taxing. I waited outside in a chair in another exam room listening to the loud hum and whirr as they started the machine. A precursor for tomorrow? The waiting was maddening. And this was just the MRI.
I’m giving him over to people I don’t know and trusting them not to do more damage, to not hurt him. Do they know he doesn’t like clicking sounds? Do they know to support his neck? If his hand twitches do they know to rub his fingers? None of these things are why we chose the doctors we did. We chose them for their incredible skill and compassion and their honesty. They’re the national experts in neurosurgery. I feel like I’m worrying about the wrong things. He’s felt no pain thus far. I don’t want that to change.