Sitting in Limbo; Waiting for Answers

Just three weeks ago today, Sami concluded radiation and chemotherapy for glioblastoma (GBM). The last half of treatment was difficult - she experienced a seizure just before Easter, and increasing weakness as treatment progressed. On the day after treatment, we went to the ER here in Auburn - Sami had some of the symptoms of a stroke. Thankfully, her condition wasn’t that serious - she had swelling from the radiation. Her doctors upped her steroid prescription to try to reduce the swelling.

We’d been warned that the interlude between the end of treatment and the first post-treatment MRI would be difficult. It was. We’d hoped that Sami would start to feel better - that the swelling on her brain would subside and that she’d be able to begin tapering off the steroid. None of this has occurred - we’ve had ups and downs, good days and bad.

One of the hardest parts of these last three weeks for me has been the realization that the side effects of treatment and the symptoms of glioblastoma are similar - right-side weakness and inattention, difficulty finding words, short-term memory loss and confusion, personality changes, to name a few. The doctors have told us it's too early to know exactly what’s going on - that Sami’s brain is so irritated from treatment that they wouldn’t be able to tell what’s happening. Until this week.

On Wednesday, we’ll have a full day of appointments at UCSF. When we made the appointment last month, we’d hoped we’d be enrolling in a clinical trial of an experimental vaccine. This evening, we simply hope we will get some answers. Sami will have an MRI midday on Wednesday; we’ll meet with her neuro oncologist late that afternoon. We hope we’ll learn a bit about what’s likely to come next. We hope we’ll learn about how we can help Sami feel better in the coming months. Most of all, we simply hope we’ll know a bit more about what’s going on by the time we drive home Wednesday evening.

I can’t imagine what it must be like to be living in Sami’s body and mind at the moment. I would give anything to help her feel better. To help her be happy, to help her have hope. Sitting in limbo, as we have been for the last three weeks, has been more difficult than I’d imagined. I hope we find comfort in getting some answers on Wednesday, regardless of what they are.