Saturday, June 20, 2009


posted by Mary Lello, Saturday, June 20, 2009, 8:27 AM

I was re-reading some of these posts and had a HUGE realization. On 5/3 I was hoping that Jim could go upstairs, I was excited that he was walking by holding onto my shoulders, I was elated that he was saying a few words and able to understand things said to him. That was just over a month ago!?

I've been on an emotional roller coaster lately. When Jim is doing well I'm upbeat and OK. When Jim is struggling for the word or thought he wants to say, struggling to get that right leg to move and not trip him, struggling to get the right hand to do a simple - yet still unattainable - task, then I find myself frustrated, scared, sad and angry. But damn, JUST one month ago Jim was still just getting over hydrocephalus and needing a wheel chair to leave the house. Perspective is everything!

We go get an MRI today. We won't get the results of this until we see Weisburg on Monday and get another Avastin infusion. I am a wee bit anxious about this MRI even though Weisburg offered that she believes we will see that the tumor has shrunk. She rarely offers this kind of foresight so it was encouraging to hear her say this. But I want to SEE this for myself. I want to KNOW that the Avastin is still doing it's job and that the symptoms we still struggle with is indeed healing. And the deep, tumor-level-healing, takes time. We are, after all, just starting this recovery road and it's slow going when you don't walk or talk so well.

So I will let you all know what I know when we know it .... and know that we know what we know and that we don't know what we know yet don't know .... sorry, couldn't resist that Rumsfield kind of speak!


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