Over the next few days, I find it harder and harder to prepare our meals. I have no idea how to adjust the measurements in recipes I use for just Mirek and me in order to make enough for Kasia, too. I also forget the proportions of ingredients in even the simplest recipes: how much water in relation to pasta, how much salt to add for that much water. And I completely lose the ability to plan; I can’t figure out which dishes need to be cooked first in order to time the meal appropriately or even which ingredients to add to which recipe and when. I can’t even bake bread anymore, a ritual that I’ve been performing every week for years, using a starter yeast from Poland. No matter how much I try, I can’t remember how to do it.
Yet as frustrated as I am in the moment, I do not reflect on what it all might mean. It’s as if I don’t remember that just weeks before, I was good at these things. I make no connection between the serious problems in my brain and the fact that I can’t cook my favorite dishes.
Even as I struggle to function in the kitchen, my obsession with food continues. I will gain ten pounds between the middle of June and the beginning of July. And it won’t bother me at all. When I emerged from brain surgery in January, I was very thin; I weighed 118 pounds, the thinnest I’d been in adulthood. But soon I’ll soar to 138 pounds, more than I would normally think of carrying on my five-foot-six-inch frame. And I don’t care. Steroids often cause people to gain weight, but that’s only part of the problem. I simply cannot stop myself from eating. It’s not about being hungry, it’s just that these treats look so good that I’m going to eat them! Why not?
Worried about the health consequences of so much sugar, Kasia gently suggests that I might want to try taming my ravenous appetite. An endocrinologist, she’s particularly concerned because I’m on steroids—steroids combined with too much sugar can cause hyperglycemia.
“Mom, please,” Kasia says. “You don’t want to be eating all of the ice cream, do you?”
“Leave me alone,” I retort. “You can’t tell me what to eat. It’s my business, not yours.”
None of us see it at the time, but my obsession with eating is a classic sign of frontal-lobe problems, which in my case are compounded by steroids that by themselves increase appetite. People with frontotemporal dementia often gain significant amounts of weight very quickly, since they have no inhibitor on their drive to eat. When the frontal cortex is operating as it should, people have the ability to weigh the pros and cons of fulfilling their desires. But when that function is silenced or gone, they just do what they want with zero concern about the consequences.
I love sweets so I’m going to eat them—period!
On Wednesday, June 24, Kasia, Mirek, and I return to Dr. Atkins’s office to learn what’s next for me. I’m curious to hear what he has to say. The steroids are giving me so much energy and I feel so much better that I know I’m on the mend, new tumors or not.
I smile at the receptionist as we check in. But Kasia and Mirek aren’t in good moods. They sit solemnly in the waiting room until Dr. Atkins’s assistant comes to get us.
“Hello!” I say to her brightly. “Very nice to see you again!”
She gives me a sad, fleeting smile as she leads us to the examination room.
When Dr. Atkins enters, his face is grave. He asks us to take a seat. Three of his nurses, Kellie, Bridget, and Dorothy, stand near him, looking heartbroken.
“Good afternoon!” I say cheerfully, trying to lighten the mood. “How bad can this news be?”
“As you know,” Dr. Atkins says, “there are new tumors in your brain—”
“We’ll simply have to deal with this,” I interject. “I’ve had new tumors before. They’ll eventually shrivel and go away, believe me.”
Bridget, the nurse closest to the door, is failing in her efforts not to cry. She turns her face from us and wipes tears from her cheeks.
“Really! It’s fine!” I assure them. “I’m telling you—”
“There seem to be at least eighteen tumors in your brain,” Dr. Atkins says.
Kasia gasps.
“As you know, you had three brain tumors when you entered the trial,” Dr. Atkins says. “About fifteen new tumors have emerged throughout your brain since the last MRI.”
“Eighteen?” Kasia says, her voice breaking. Mirek tenses beside me but says nothing.
“Oh, I don’t think that’s the case,” I say. “What you’re seeing is something else, inflammation perhaps, or some—”
Dr. Atkins interrupts and offers to show us my scans in his office next door. Kasia goes out with him but I don’t follow them, and Mirek stays with me. When they return, Kasia’s eyes are glistening.
The scans show a scattering of small but distinct black spots in my brain, Dr. Atkins tells us—over eighteen little shapes the size of raisins. The largest tumors are in my frontal and parietal lobes, he says, but they also lurk in the temporal and occipital lobes, and in the basal ganglia, a group of brain structures in the base of the brain that help coordinate movement. Later, Kasia will tell me that on the scans, my brain looked like a lump of raisin-bread dough.
The largest tumor, Dr. Atkins says, is in my frontal lobe. It’s the size of an almond.
“No wonder you have been acting so unlike yourself,” Kasia says quietly.
“Really, Kasia—I haven’t been acting that different!” I say.
The brain scan, done on June 19, in which Dr.
