Things are ok this week

I spent the day with Susan yesterday for her bi-weekly chemo treatment at UCLA. They’ve adjusted her anti-nausea medications the past two times to prevent the severe vomiting she had in December. It’s helped, although she got sick this morning. At least it hasn’t been persistent so far. She had a podiatry procedure on Tuesday to permanently trim the sides of her big toenails that were chronically curving into the sides of her toes, causing pain and swelling. I know her feet have been aching the past few days; but she hasn’t complained. I admire her toughness. She had a delicious speech therapy exercise today with Linda – making brownies. The speech part comes into it with reading and following a recipe. Brownies are a delightful language and are quite therapeutic.

After stopping the steroid Decadron (brain swelling) a week and a half ago, Susan also stopped taking the antifungal Fluconazole (fungal meningitis) this week. We consulted with her infectious disease doctor and decided to give it a try while watching her closely for the return of meningitis symptoms. We tried previously in the fall of 2007, but the infection came back and required a hospital stay. I pray her body is strong enough to fight it now so she can have a break from the meds. I have some concern about a report from her therapy team in this morning’s conference call. Over the past couple of weeks, they’ve observed a decrease in Susan’s endurance, task initiation, and appetite, and also noticed a slight left-side tremor. I haven’t seen the tremor, although I have noticed the lesser appetite, and expected it since she’s off Decadron. She seems to have returned to her more modest pre-brain-tumor eating. Her reduced endurance and initiation can vary with levels of fatigue, but could signal an emerging problem. So far this evening it’s taken her about 40 minutes to write two sentences in her journal as she struggles to see what she’s written and remember what she was going to say next. She’s tired – but I need to watch out for other trouble.

We met a new brain buddy two weeks ago in the 200 Building MRI waiting room at UCLA. She’s about 50 years old and is a five-year survivor of GBM, the same high-grade tumor as Susan’s. Following a seizure, emergency brain surgery, and a coma of some length, she came under Dr Cloughesy’s care and received temodar/radiation treatment. She has been stable for four years. As we connected immediately in GBM comraderie, she encouraged Susan to think as though the tumor is gone, get rid of negativity, and laugh a lot. She watches “I Love Lucy” reruns. Otherwise, she continues to work in her career and has no noticeable appearance of having had brain surgery or being on steroids. The scar on her right frontal lobe is only visible when she lifts her hair that’s combed over it in a stylish way. We were struck by her positive outlook and thankful for her encouraging words.

Later, after reviewing Susan’s favorable scan and while she was getting her chemo infusion, I began to consider life with her in the longer term, allowing my mind to imagine what our future might be like in five or ten years. I’ve been neither fatalistic (even though she has an incurable disease), nor blindly optimistic (even though God may heal her tomorrow). Instead, I’ve opted for balanced realism – hoping for the best, and ready for anything. But our new friend’s experience and advice had me casting my mind out further, hooking on to a fragile idea and letting the big fish run a bit as the line spun off the whirring spool. Maybe the new-normal of Susan’s life with GBM can be more or less permanent. Maybe the fullness of life to be that I’d written off as unlikely could actually happen.

Then I stepped out for coffee and passed our new friend at the appointment window with her husband. I heard her say with tears, “I didn’t think it would come back,” as she stomped her foot in frustration. They’d just reviewed her scan with Dr Cloughesy and discovered her tumor grew. After four years and some two dozen bi-monthly MRIs, it’s back. I offered them comfort as I watched the crushing notion come over her that brain tumor world is enveloping her again – chemotherapy, medical leave, more drugs, who knows. I was gripped by the contrast between her earlier confidence and her present frailty. It’s not that her lively counsel now rang hollow or was somehow dishonest. It was as real and true as her as 24 stable MRIs. It’s just that the thing – the issue, the cancer, the incurable disease – is always there. You can’t control it. You can’t wish it away.