Ann Veronica Simon and Glioblastoma

(a malignant brain cancer story)

And, now, the 'blog' style entries that this page used to contain, with information about our fight.

February 24, 2003 We have lost. Ann is dead.

I'm not yet at the point where I can write about her final days. The cancer in her spine moved quickly and viciously, quickly effected her breathing and swallowing, and she went downhill from there very quickly.

Memorial services were held in Oakland at Chapel of the Chimes, and in Chicago. Celebrations of her life were held in Boston and Oakland.

Watch this space for further information, or call me.

February 14, 2003 Our ten days of radiation are finished, and our hopes are weakened (although not our resolve and determination). The radiation did not have the hoped for effect and melt away the tumor. It's possible that the tumor growth has stopped, however, as the scan at the end of radiation.

We are deeply scared, and trying to figure out what our next options are. We will be seeing Dr Prados again on Tuesday.

Ann's function has declined a lot in the last two weeks. At this point, she's not able to feel or move anything below about her waist. Bowel functions aren't under her control. We can't use a wheelchair, because Ann's spine needs very precise positioning (a fancy wheelchair would work, but we don't have that on line yet).

Pain management has been a bit of a struggle. Everything changed so fast, and pain got so positionally dependent that we were increasing our technology every few days. Right now we're using fentanyl patches, and oral morphine for the breakthrough pain (which really only happens during transport).

We hooked up with the Sutter Visiting Nurses' Association (VNA). Those guys are GREAT. We saved a whole trip into SF by having one of the nurses come by and describe the same thing I described to our UCSF nurses, who diagnosed "THRUSH" (radiation induced fungal infection), and got a prescription that evening.

February 1, 2003 Ann has a reading at 21 Grand in Oakland, organized by her poetry friends Alex Cory and Pamela Liu. The reading went terrifically – thanks to Sarah Lockheart (fellow DeltaPsi fraternity member) for donating the space, and everyone who helped with Ann's transport.

Watch the video

January 28, 2003 The last 6 weeks have been rather hellish. Sometime around Christmas Ann started describing that there was something in her leg and hip that wasn't quite right. She said that she had slept on her hip funny, or our bed was uncomfortable, or she had cut her foot. Sometimes that was true, but it also seemed that something was getting worse. In our regular neuro-oncology appointment in early January, we saw Dr Chang and showed her what was happening in the leg. We described it as a "sleepiness" "deadness", and "cold". Dr Chang was most worried about blood clots, which occur in about 40% of Glioblastoma patients. The venous ultrasound came back negative – no clots. We weren't terribly happy, because over the following weeks her leg kept getting worse. Finally, we saw Dr Nelson at UC Berkeley Tang Center, who we originally worked with in the diagnosis process. He's a neuro-muscular specialist, and did a detailed exam. His exam was troublesome. Whatever was happening was effecting multiple muscle groups and multiple nerve groups, and would best be accounted for by changes in the brain, especially given where Ann's tumor had eventually been. We restarted Decadron (steroids) that day, and got an immediate positive result, which was also worrisome.

A week later we had our regularly schedule brain scan. To say we were tense wouldn't even begin to describe the feeling. We were fairly sure that we'd see dramatic regrowth. Instead, the scan was "clean" – ie, stable – as the others had been. As Dr Prados said, "This is not good", as there are only a few places for the problem to be – leg, spine, brain. If it wasn't in the brain, it was likely in the spine. So we had an immediate spinal MRI that evening, and Dr Prados stayed late to give us the news.

We visited his office when most of the lights were off and only the cleaning staff was around. After taking a quick look at the scan, his response was "this is not good" again. The tumor had spread to the spine.

We are – in some ways – upbeat. Tumor progression will be hard to fight, but cancer in the spine could be treated by radiation, which worked before. We stopped the OSI-774 and Temodar, and are going back to visit Dr Larson the next day.

Ann's function is decreasing rapidly. She's just on the verge of not being able to walk, and we'll need ramp and wheelchair technologies.

September 28, 2002 Ann went in for her drug study today. She stays in the hospital for a day while they take blood quite often to judge the exact effects of the OSI-774. They do this every time they escalate doses. That floor of the UCSF hospital has been recently renovated, and although it's kind of boring, it's nice enough.

Ann's white blood counts (total WBC, and neutrophil component) were fairly low this week, which prevented her from taking the next cycle of Temodar on time. We're working to bring those values back up and get her blood healthy. There are a number of theories, such as her system continuing to fight off a virus, or maybe some general sadness and depression bringing down her health. We're doing a lot of work researching the possibilities and coming up with an effective approach.

She's also got some odd blisters on the inside of her arm. Dr Chang saw them today, and didn't quite know what to make of them. They don't seem to be infectious, but more some kind of simple dermal thing, perhaps from Ann's good luck bracelets.

September 16, 2002 Today we got the results back from the first scan we've had since Ann finished the radiation. This scan would tell us generally whether the OSI-774 and Temodar regime was having a positive effect. Boy, were we nervous. What actually transpired was that we had the scan on the morning of the 13th (a Friday) fairly early (scan started at 8am) and were done by 10am. Since we were in the area, we stopped by to talk to DR Larson. He took a moment to pull up the scan and walk us through it, and said it seemed to him to be fairly good. On Monday we saw DR Prados, who gave us the report and took us through the usual exam. We're happy enough with the treatment, are sticking with it, and escalating to the next dose level (300mg per day).

UCSF has switched to a new scan viewer version which seems to have removed the most useful feature, the ability to view two different day's scans at the same time. This is clearly a feature reduction because it's a "free" version of the software, which I don't appreciate. The new software has many new cool bells and whistles, like being able to make movies. The movies are currently AVI files that will likely run only on recent versions of Windows Media Player. Both are about a megabyte, so you may want to download them instead of simply clicking.

May 28th, 2002

September 13, 2002