Life After CART - Days 1-5

It's long past time that I wrote a proper update, so over the next few days, I'm going to give it my best. John and I have been in Houston for almost two weeks—though it feels much longer.

Aside from frequent headaches and bouts of nausea, I’m feeling pretty good. Today, I even put on a little makeup and earrings—when I look better, I tend to feel better. It’s Day 4 following my CART infusion last Wednesday, and so far, I remain free from side effects. The NP who visited me this morning reminded me that symptoms usually appear around Day 7. The most common is fever, while the most serious would be neurological changes indicating neurotoxicity.

You don’t need an explanation of “toxicity”—it’s not a good place to be. Every day when John and I visit the Ambulatory Treatment Center, my nurse asks me a series of questions:

• What city are you in?

• What year is it?

• Where are you now?

• Who is the President?

• What is your full name and birth date?

I also have to write a sentence each day. On Day 1, I chose: I love my cats. (Of course.)

If I develop a fever of 100.4 or higher, falter in answering these questions, or tremors in my hands make my sentence illegible, I will be admitted immediately to the hospital.

John runs the same tests every morning when we’re at our hotel or at my cousin’s house. He’s not as meticulous as the nurses, but I know he would act immediately if something were wrong. He has an uncanny insight into my soul in that regard.

So far, no adverse side effects—but again, this is only Day 5.

One concern I raised with the LPN yesterday was the possibility of developing facial palsy months after treatment. When I read about it, I immediately thought of my dad. He developed Bell’s palsy a year or so before he passed, and it left him miserable. The left side of his face was completely paralyzed, with no sensation, and it affected both his smile and his ability to eat. Naturally, he felt self-conscious and, I think, even depressed.

Fortunately, the LPNs reassured me that even if I were to develop palsy, it would not be permanent. Still, I can admit a twinge of vanity: palsy is disfiguring, and I know I wouldn’t handle it well, even temporarily. As with all things, I will cross that bridge if I must.

I don’t know what Day 7 will bring, but today I feel steady—and that feels like a gift.