Friday, July 1, 2011

Reality Bites

The gravity of the situation is sinking in. We had a long family "discussion" last night. Suffice to say someone was pretty teary.  Actually more than teary. The boys were incredible. The focus became more about how do you live each day with meaning, and make sure you do, say, instruct, and write everything you need to no matter how much time you have left. It's something we all should do, because you never know.

Meagan realizes now that she is not likely going to beat this thing. It's likely not a matter of if, but when. Having some emerging options shut down certainly generated the discussion. It doesn't mean we aren't going to pursue every logical treatment possible. It does mean we will have the discussion about treatment benefits and impacts, including quality of life.

Nothing has changed in terms of new information. We really don't know how the disease is progressing and won't have a picture until sometime mid-July. But she does now understand that melanoma going to the brain is bad. Strokes caused by tumors bursting is bad. Even though in the past she has explicitly not wanted to discuss prognosis, she now realizes given where it is and how it has  presented, (and she certainly knows it's growing because she has tumors on her skin she can see growing),  and that remaining treatments don't have a very good track record, that it's likely a battle and war that won't go her way.

So there has been a definite mental and emotional shift. We certainly don't want everyone lining up like it's her final days, we really don't know how long she has and it could be quite a long time - and maybe a miracle will happen. I also want to give her the respect she deserves and let her handle this with each person individually, however she so chooses, so please, even though I am disclosing this, "keep calm, carry on".

She is going to manage her schedule and activities, it's just that the priorities might change. She's probably not going to worry too much about organizing the linens. She will prioritize based not on the expectation or hope that something will work, but that time is maybe more limited. So I expect to see her in her studio more, and expect her calendar to be a bit more full.

As to all the boys, we are of a common mind to support her in whatever way she needs, and told her she doesn't need to do anything alone. We are beside her every step of the way, for as long as that journey is, even if it is for quite a while longer, or not. We aren't walking around with the cloud of doom over our heads - even though it is of course immensely sad and unfair. But we've had time to adjust and think and talk about this possibility for a lot longer than she has. So our focus with her is about quality of life, meaning, and showing her the love.

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