Thursday, August 4, 2011

Last night was particularly rugged

There seems to be a pattern based on our visits to Dr. Kaplan when we get (bad) news. Actually we've never had good news coming out of his office. But Megan aways feels comforted by him, even though he is delivering bad news. He makes it seem not so scary, somehow gentle and hopeful. Not hopeful in the sense that she believes she is going to make it, but hopeful in the sense she will have enough time, that it's not imminent (like from a tumor bursting, although that could happen), and that she will get her projects done. In the course of this discussion, data and information is provided - and of course therein lies the source of potential conflict later - she hears one thing and I hear another.

We did then go and have lunch and then walked all around Greenlake. We talked candidly and openly about everything. I thought we were on the same page in terms of prognosis, timeframe, treatment steps and expectations, and in agreement on how it should end - hopefully gracefully, gently, surrounded by love and "sparkles".

When we got home, after talking with the boys, and she overhearing one of my conversations - she got pretty upset. Mostly related to the timing (she thought it was longer and my recollections of the discussion were more analytical and clinical while hers were more diffuse) and clinging to ways to have hope (not hope for making it but hope for living long enough that people weren't looking at their watch). Time has, self-admittedly, taken on a new concept for her since the stroke. She doesn't have a sense of it at all. So I think this, coupled with some challenges in comprehension, led her to having the full brunt of the news really sink in after we got home. So there were several hours last night when she was pretty over the top distressed.

But she has a remarkable capacity to rally and the resilience to adjust and move forward. We talked about how even if she lost the capacity to read or write that we could get people in to read to her or take dictation. She is reading a book called, "Dying Well" and I think that is helpful. Later in the evening she looked up and asked if I would be sleeping next to her when she is in a hospital bed set up in our living room (of course I will as long as it's a queen size). Then later she looked up and said, maybe not in the same bed, but next to me, apparently after hitting the section about hygiene and how it goes in the later stages. So she still has her sense of humor and is still a prissy girl.

We both agreed we have no idea how to do this, or do it well. We are just mucking through this process, and an unfortunate side effect is distress. But as Kaplan said during our visit, it wouldn't be normal if you didn't have periods of time when you weren't a mess - because this is tough stuff, the toughest ever.

So onward. I have done all the research on the GammaKnife process and can help Meagan understand it when we meet with our radiation oncologist today, Dr. Vermeulen. That is a more complex process than the whole brain radiation. I really can't even speculate which one will be done - Dr. Vermeulen had not read the MRI results when she had the phone conversation with Dr. Kaplan; she only gave a rough guess about a recommendation based on his description. I expect she will be certain today. The GammaKnife is a one day procedure, the whole brain radiation is done over a number of days. In any event it looks like we will be around to enjoy our beautiful garden and the nice days of August.

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