Improvement and good news

The past several days have afforded a few more work hours for me, a good sign that accompanies Susan’s gradual improvement. Last Tuesday and Wednesday we made a couple of trips to UCLA for three specialist appointments following her hospitalization a month ago. First, neurosurgeon Linda Liau discussed Susan’s recent MRI, confirming the blood clot in her brain has absorbed a little and the tumor remains stable – double good news. She said if Susan had not been improving or if she worsened, she would need surgery to evacuate the bleed. With Susan making advances from week to week, it’s clear she will not need another operation right now. We are grateful. Dr Liau will evaluate Susan’s future scans to follow up.

Next, neuro-oncologist Leia Nghiemphu said Susan has made remarkable progress and was pleased to see her alert, responsive, and walking. We talked through different next-step treatment options and decided that since she’d had a complete six-month course of Avastin and CPT-11 without tumor progression before her hemorrhage occurred, Susan could have a break from chemo for now. Had the bleed started early on, it would have been urgent to begin a replacement therapy since glioblastoma can grow so aggressively. But with twelve doses of Avastin on board plus tumor stability, Dr Leia feels comfortable doing monthly MRIs and watching for changes. This will allow Susan to recover from her bleed more fully and wean herself off steroids again. We were greatly encouraged by these two good-news visits. Before heading to Junior’s Deli for lunch, we ambled through the treatment center to visit the staff who’d been injecting Susan’s chemo drugs every two weeks since June and who last saw her under the daze of her hemorrhage. Nurse Nikki was thrilled to see Susan and witness her progress.

On Wednesday, we headed back to the 200 Building to see infectious disease physician Daniel Uslan. He and I voiced our relief that Susan’s hospitalization had not been due to infection relapse after we had stopped her anti-fungal med in early January. He’d agreed to my request to stop Fluconazole, so her infection-like symptoms several weeks later had us both second-guessing that decision. Now we know the hemorrhage was the culprit, and her blood and spinal fluid are clear of infection. Even so, he recommended keeping her on low-dose Fluconazole indefinitely since fungal meningitis is so troublesome and she seems to be tolerating the drug without side effects. We did manage to cut out another drug, though – she’ll have her last dose of the antibiotic Bactrim when she tapers off her steroids. Woo-hoo! Less pills! Less pills! (We get excited about these things.)

Meanwhile, Susan has begun her physical, occupational and speech therapy work with a new team from Hygieia Home Health. Their treatment is less intensive with fewer visits than her prior team, so it will require more initiative from her, her caregiver, and me to keep her exercises going. Otherwise, her playfulness is loads of fun and offers perhaps the most powerful sign of her commitment to get well. Susan has taken to repeating a “La-La-La” song we heard from a 90+ year-old patient named Matilda last summer at the rehab hospital. Matilda had a beautiful soprano voice, and would scoot around the hallways (or sometimes into a patient’s room) in her wheelchair singing her high, graceful “La-La-La” tune punctuated by a low-toned, quicker “La-La-La” rhythm. It was something to behold. Our first encounter was bizarre. Matilda, whose language was Czech or Russian laced with dementia, had wheeled herself into Susan's room during a family visit in a fruitless attempt to escape the ward from the sliding door near Susan’s bed. She kept “La-La-La”-ing while bumping into Susan’s bed and had Austin trapped between the bed and the sliding door. We let her carry on as we resumed our visit and tried not to disturb Matilda’s world. Austin thumbed something on his cell phone and held it up to us. The screen read “911” and gave us a good laugh. Over the summer, the kids and I would imitate Matilda frequently. Now Susan enjoys singing my very own arrangement of Matilda’s serenade, and does so to everyone’s great delight – especially her own. She’s even branched off into other songs and is fond of a “La-La-La” rendition of “The Chicken Dance” that’s a real corker. Susan is sassy with style.