Stable MRI, more chemo

We ventured back to UCLA this week for Susan's two-month MRI following our busy and joyous holidays that flew by in hindsight. Well into her fourth round of chemotherapy, Susan's status has been remarkably normal. Rather than having the setback one might expect with tumor growth and chemo, she’s maintaining her level of strength and ability. In fact, it’s common now for people to encounter her and say she’s the Susan they remember. We’re so thankful.

Not surprisingly, her MRI was stable. We’re grateful to see no indications of recent growth, although Dr Nghiemphu is intently watching a couple of areas. Our full schedule on Wednesday featured labs, MRI, oncology update, chemotherapy, and meeting more brain buddies. Susan has done well after three monthly infusions of Carbopatin. She had only slight fatigue after the first two, with a few days of Zofran to prevent nausea. Her good lab results so far show her body has handled the chemo well.

The neurological exam that accompanies Susan's oncology visits is standard practice for brain tumor patients. “Hold your head still and follow my pen with your eyes.” “Squeeze my fingers.” “Lift your knee while I press down against it.” “Other knee.” “Smile.” “Frown.” There are probably a dozen questions and commands in all, including spelling “world” then spelling it backwards. (Even I have to think about that one.) Some of the questions deal with orientation of place and date. Susan can struggle with these, made even harder with word-finding trouble. But her cleverness came through this week when she was asked, “Where are you right now?” Her pause told me the answer wasn’t coming easily. Then she looked into the nurse practitioner’s eyes and said brightly, “I’m with you!” That was a good one.

I frequently use our blog to reflect on our situation and arrive at a helpful perspective. Four and a half years later, it’s still often surreal to me that Susan has a brain tumor. As much as we’ve adjusted to our circumstances, it’s still somehow hard to believe what’s happened. A week ago or so I recognized Dr Javahery coming out of a medical office building as we were about to enter for an appointment. He’s the neurosurgeon who performed Susan's emergency brain surgery in 2007. We’ve had no contact with him since then. Amazingly, he remembered Susan; that he did her resection on July 4^th, that we’d had to move quickly against her worsening condition, and that we sought treatment next at UCLA. He regrets not being able to operate under more controlled conditions, but said he had to de-bulk the tumor or she would have died.

Time did not permit us to relate to him what she’s been through, but it was enough for him to know what patients like Susan experience and to see her there with me. He shared a proverb with us: “Absence diminishes small loves and increases great ones, as the wind blows out the candle and fans the bonfire.” Having nearly lost Susan altogether, its truth resonates. Our brief and lovely encounter allowed us to encourage each other and made Susan and I glad to greet and thank him. The care of doctors like him has been a gift.

As I consider how our brain tumor experience has been transforming us, I’ll share those thoughts next time.