"This is so hard"

posted by Mary Lello, Tuesday, November 3, 2009, 5:15 PM

These are Jim's words lately. When I look up from doing whatever at the breakfast table and he's hunched over and crying ... "this is so hard". I'm glad he can get this many words out right now but I so wish he could tell me more, say more, and this is what he is referring to as being so very hard.

I can't imagine what it must be like for him. I only know what it is like for me and it IS so hard. We have lost so much of our quality of life to this disease now. It's truly difficult to explain to someone who asks 'how are things going?". It's difficult for our closest friends - who see us daily or at least weekly - to understand the constant daily grind, patience, fortitude, strength, endurance, tears and the occasional laughter that goes on in this house so it is next to impossible to explain to someone we see infrequently.

This IS SO very hard.

And at least I can talk to people about it. I can look at a friend in the grocery store and with tears in my eyes tell her I'm just exhausted. At least I can get my thoughts out of my head and into the stream of consciousness. At least I can walk outside and throw things and yell a few good swear words. Well, actually, these are the few words that Jim CAN say that come out crystal clear! Which is very common with folks who have this kind of speech deficit. It's a really good thing!

This all is just so hard.

Jim got another MRI last Friday 10/30/09. Dr. Weisburg is out of the office for a few days this week but had told me to call and talk to her NP, Dawn, who could give us basic information on the MRI. Today Dawn left me a voice mail that said the tumor is stable but "there is some edema, which can happen". I'm not sure why this 'can happen' or what is causing it but I do know Jim needs to go back on 2 mg of steroids a day again. DAMN! For whatever reasons this feels like defeat for me, going BACK on steroids for edema in the brain. Haven't we been here before? I know 2 mgs is nothing and the edema didn't seem to raise huge red flags with the oncology office since it "can happen" but I'm red-flagging all over the place! And I worry how Jim may take this news as well.

This is so hard.

And all we have, in thin, frail fragments, is hope that it will only get easier.

I do need to add before closing that this morning I was leaving to go to work. Jim kept trying to say something and was getting really agitated and upset because he couldn't say it and he couldn't let it go. When this happens, that he can't let it go, I know it's important to him. So we went through our questions and my trying to understand what word he was saying and his getting more frustrated. I knew it was about today and ... VOTE! You want to go vote? YES! AH!!! So our friend, Rob, took JIm over so he could vote on the very important issue of equality of marriage for all in the state of Maine. I'm not surprised Jim remembered he had to vote today, he is Jim Daniels after all! But I'm so very proud of him for remembering to vote today!

Rob shared that Jim had a moment of panic before entering the High School and just looked at Rob. Rob told him "Jim I will be your eyes and your words in there ..." and Jim relaxed and went in and voted with Rob at his side.

Yup, those are the kind of friends we have around us!

This is so hard - but it is this kind of love and support that offers a softening to our difficult life right now.

Loving you all back,

Mary