Another Stable MRI

Good news...an MRI taken earlier this week shows that the tumor is holding steady. This means that we have begun another round of chemo (Temodar) and will wait two months for the next MRI.

It has been a busy few weeks since the last entry. First, Keith's shoulder seems to be holding for the present. We have connected with a very good physical therapist who is working on both his torn rotator cuff as well as balance and motor deficits from the tumor. Except during the week of chemo, we are able to see the therapist twice a week and Keith has homework for the other days. (Homework ranges from arm/shoulder exercises using a pulley to kicking a ball to playing jacks and drawing pictures on an etch-a-sketch.) Given current progress, we have decided to forego the shoulder surgery unless it becomes absolutely essential - our preference is to maintain our focus on fighting the cancer. Diverting Keith's immune system toward any other "battles" is simply that - a diversion and a dilution.

At the end of March, we both attended the annual Brain Tumor Conference at UCLA. This was a full weekend of lectures on topics ranging from the latest experimental treatments to managing seizures to nutrition to caregiver support. There was a lot of material to digest - much that was helpful - some that was discouraging. On the one hand, we were struck by how little is understood about Glioblastoma; on the other, we were impressed by the heart and the intellect of the research doctors who are working full stop to find better treatments. It was a difficult 2 days for Keith - he had to suffer through many presentations with those gruesome life expectancy charts. As one lecturer quoted Mark Twain (who was quoting Disraeli), "There are three kinds of lies: lies, damned lies and statistics." We certainly got our fill of the deceit of statistics. Nevertheless, I took away a few new tricks and found some new resources. As Keith summed it up, the brain tumor patients who were able to make the conference represented those patients who will survive this disease. Being an active participant in your own treatment is fundamental even though it is often unspeakably and uncomfortably horrifying.

We have continued to enjoy a stream of visitors from near and far. This has been lovely - and we thank all for taking time out to be here and also for their tolerance of our oft-chaotic "now" existence. (We aren't the best of hosts these days!) There have been so many heroes who have delivered homemade food to our doorstep, ferried Keith to the doctor and brought him lunch on a moment's notice. Thank you. Thank you. Thank you.

Finally, one last bit of news. We have taken a slightly new tact in the area of the seizure management. Keith has elected to taper off one of the anti-seizure drugs - klonipin - as it seems to be one of the largest contributors in making him feel drowsy and as he would put it, "dull". Alas, break-through seizures have continued - but for now they seem not much worse or more frequent. On the positive side, everyone has remarked that we have more of the "old" Keith back - including his well-known sense of humor.