Yesterday was hospital day; Chuck went in for another MRI and then we met with his doctors, he had some blood work done, and he got some IV fluids. MRI results looked great – no change since the last one in July. The tumor looks less bulky and less defined, which is what they want to see – and the results are typical of someone on a blood vessel inhibitor (the AZD trial drug is a blood vessel inhibitor). The problem is the AZD is making Chuck REALLY sick, so we had a long conversation with the doctors about quality of life vs quantity of life. When Chuck is on the AZD he is so sick and out of it – his personality disappears and he sleeps all of the time and has horrible GI problems. Because of all of the nasty side effects he was experiencing his doctor decided to take him off of the AZD this past week – last Sunday was his last dose, and each day I saw his personality come back more and more. He started feeling better by Wednesday, and by Thursday he was pretty much back to normal (the new normal). So, we discussed all of this with his docs yesterday, and they asked if he would be willing to try the AZD one more time at a slightly lower dose, and as soon as he starts having any bad side effects they agreed that it will be time to take him out of the trial. He also started the double dose of chemo again last night – so we know that by the end of the weekend he will be feeling pretty crappy again. Another side effect he has been experiencing is a change in his taste – which I guess is pretty common for people on Temodar (his chemo). He hasn’t been eating much at all over the past month – I would say he is taking in maybe 500 calories on a good day. We discussed with his docs and they are of course concerned and told him that he needs to start taking in more calories. They scheduled an appointment with a nutritionist that works at DFCI and has experience with people having issues b/c of chemo. We are a little nervous about this appointment since we have never met a nutritionist that embraces a vegan diet, but are hoping she has some good suggestion as to other types of foods to try that might taste good to Chuck.
Overall we had an excellent week, with Chuck being able to take a “vacation” from the AZD and feel more like himself again. Plus we received the great MRI results, which is something to celebrate. And although we know the week ahead is going to be tough because he is going back on the AZD and the chemo, we will make the best of each day and keep a positive attitude.
Another heartfelt thanks to all of our amazing friends who sponsored the walk – Chuck and I are overwhelmed by everyone’s incredible generosity and loving kindness. We can’t even believe that we now have this amazing trust set up for Chuck, a safety net to ensure that he continues to receive the best medical care and supportive treatments.