It gets worse every day


Because of all the damage the tumor, surgery and radiation inflicts on the brain, steroids become a necessity to reduce swelling, and thus suppress some of the effects you get from the swelling such memory, speech and vision issues. Jan was on high dosage during the radiaton and chemo, which was reduced towards the end of treatment. Unfortunately, the steroid was also suppressing a very nasty reaction to the chemotherapy drug. As we approached the end of treatment, we noticed a few patches of a rash on her arms. This continued to spread across her entire body…everywhere. And then, during a holiday weekend, she was not feeling well either, so we wound up with a nightmare experience in the UC Davis Emergency Room. As with most E/R, it became a Hotel California experience - you can check out anytime you want, but never leave. The end result was putting her back on steroids, and also getting a steroid ointment which I had to apply over her body twice a day. It worked fortunately. She also, because of the impact of the chemo on her immune system, had a herpes breakout. This was not what we were hoping for obviously.


The rash disappeared once Jan was back on the steroid, and the herpes was resolved with a drug, but the main issue was that our oncologist did not want Jan taking the chemo again. The standard treatment would have had her taking this same drug for one week per month going forward, to try and keep the cancer at bay. The chemo rash, as well as blood disorders caused by the drug, made it too dangerous to continue with this treatment.  Without this drug, there would be nothing attacking cancer cells. Our oncologist recommended switching to an infusion of Avastin, which at one point was hoped to be a wonder drug for glioblastoma as it suppressed the development of the vascular network that tumors build. It also helps to reduce swelling, and clear out all the necrotic material leftover from radiation. This is important to have a clear view of the tumor cavity, and see if the tumor was advancing. So, along with the drugs, Jan now had to have an infusion at the cancer center every 4 weeks. 


Jan was doing fairly well during this period of her treatment. Her vision had degraded somewhat, and her memory bounced around - sometimes it was good, sometimes bad, and we attributed that to brain swelling - increasing dosage of the steroid was the answer to that. Our oncologist was telling us, based on the MRI assessments, that there was Iikely no tumor progression - it was call pseudo progression, which showed up on the MRI’s as a fuzzy area surrounding the tumor cavity. As long as is was not progressing, there was hope. So, we tried to have as normal a life as possible - a nice trip to Carmel, visiting friends over Thanksgiving and Christmas, all the time hoping that the gorilla was not getting larger. Jan was positive, but I was fearful since I did research, and had a sneaking suspicion that all was not well. Jan was tired and could not exert herself too much, but we did get out and about at least through the end of December, and even into January. 


During this time, my life was all about care for Jan and nothing else. I stopped playing tennis after Jan fell in the bathroom, and I did not get her call. At that point, I only left for very short trips or walks. 


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