A Love Song

posted by Mary Lello, Wednesday, October 28, 2009, 11:37 AM

I've had this song going through my head for over a week now.

I've sung it while running the beach, getting ready for work or just driving around. It's a John Denver song. I lived in Colorado when Denver was getting his name made and all us "cool ski bums" use to make fun of him. But now I appreciate his music and his poetry .... and he writes a damn good love song.

So this is for all of you who have lost someone you felt this way about, or those of you who love that person now, or those who hope to love like this some day. This is a love song for anyone who just connects with it, for no reason at all.

Annie's Song:

You fill up my senses, like a night in the forest.

Like a mountain in spring time, like a [run] in the rain.

Like a storm in the desert, like a sleepy blue ocean.

You fill up senses, come fill me again.

Come let me love you. Let me give my life to you.

Let me drown in your laughter. Let me die in your arms.

Let me lay down beside you. Let me always be with you.

Come let me love you, Come fill me again.

And of course, this is my song for Jim.

We get another MRI after the Avastin infusion this coming Friday 10/30/09. I shall let keep you all posted.

Just love,

Mary

3 steps forward, 5 steps back

posted by Mary Lello, Monday, October 19, 2009, 6:07 AM

Others who have survived cancer have told me it can feel like 3 steps forward and 5 steps back at times. Well, I feel we've taken those backward steps lately. All the jubilation of the bike ride and a necrotic tumor are fast fading. Jim's speech is declining. His words are very muddy now and very difficult to understand. He can not retrieve enough words to complete a simple sentence. He breaks down in tears of frustration and fear very easily. I break down in tears of frustration and fear with him. Life is good?

We went for our biweekly Avastin infusion last Friday (10/16) and saw Dr. Weisburg. She is very excited at how well Jim is doing. When I mentioned his speech she said, and I paraphrase here, that we are coming up on the 1 year mark which is beating all the odds for a glio victim (yup, little reality check there for me!) and she's so happy for Jim. Since he is "surviving" all this we may now be seeing the effects that radiation had on Jim's brain. Radiation kills the healthy cells as well as the cancerous cells. What we are witnessing in Jim may be the effects of killed brain cells in the area of speech and comprehension.

OK, this feels more like 20 steps back!

I know the brain can heal. I know the brain is elastic and capable of re-routing and re-growing and doing amazing things. I know that stroke victims have recovered fully from brain trauma that occurred in the language and speech areas of their brains. I also know "they" say it can take a long time. And this is where I lose it a bit. I can NOT focus on how long this may take. I can NOT look down that road at all. I'm willing to only buy into 'magic' and stake my heart to miracles and believing it will all happen faster than 'they' say.

Sometimes I miss Jim so much my entire being just aches.

But this morning the light is golden and reflecting off white hulled boats and every single sparkling, dew laden leaf. This morning I only need to make sure Jim looks out the window at this gorgeous morning when he gets out of bed. This morning I will help him take all the steps needed to make it through another day regardless which direction he goes.

Loving you all back,

Mary

Crystal Ball

posted by Mary Lello, Saturday, October 10, 2009, 5:13 AM

The bike ride is over now but so many folks still contact me and tell me how amazing it is to see the pictures and read the story. It was an amazing day and a wonderful goal that felt so huge and felt so good to accomplish.

But life didn't change here because of it.

I was speaking to a friend I ran into at the grocery store and was telling her that we still ride a huge roller coaster with small highs and very deep valleys. I also shared a thought I've been having lately - OK, it's a little far-fetched but it's a truth for me - what if an angel had come to me and said "Mary, Jim is going to get cancer when he is 58. It will be a life threatening cancer and one with no real cure. But you have a choice as to what kind of cancer he can have. What will it be?" My response? ANYTHING BUT BRAIN CANCER PLEASE!

I am not belittling other cancers - I've lost too many friends and family members to all kinds of cancers over the years to think any one is "better then" another - but brain cancer is so very difficult. It has taken my JIm and pushed him deep inside where every day I see him struggle to come out. It has taken away his ability to speak his thoughts - this from an extreme extrovert who always had a lot to say about so many things. It has made reading and writing impossible at this time. JIm is a writer and a day would not go by when he didn't read the paper or lay in bed at night and read a book. It has taken away all of his independence, a man who has traveled the world and to very remote places and now he can't drive himself to treatments or make a decision about what is best to eat for his cancer or even be here alone in the house. It has changed how he views the world when his world view use to be captured as beautiful moments on film for others to see.

Anything but brain cancer please.

But brain cancer is what we got and there is no crystal ball, no angel offering us a choice, no changing this story line. So everyday we greet another day, glad to have this new day together, and dig a little deeper into our reserves and set our intent in order to face the challenges this day may bring us. We try to celebrate the small improvements and to move forward with the set backs. We try to trust that we have the strength to do all this, again, for another day.

I'm hearing Bob Marley this morning singing "Cause every little thing is gonna be alright" .....

Loving you all,

Mary

MRI on Monday 9/7/2009

posted by Mary Lello, Thursday, September 10, 2009, 2:42 PM

We won't see the doctor until JIm's next Avastin infusion which is next Friday. So I called the office and asked that they give us a call when Weisburg had a chance to look at the MRI and just let us know what she knows. The voicemail from the office said that "the tumor looks stable with possible slight improvement". Weisburg admits she's not an expert at reading MRI's so she might not have talked with the MRI Techies yet. I feel there will be much more info when we see her next week.

This is good news. I'm assuming the "slight improvement" may just be a few more mm of shrinkage - which in the brain is BIG! The specialist at Danna Farber had told us that Avastin might not shrink the tumor but would stop it's growth. We have heard of folks with the same kind of tumor as Jim who are now tumor free with the Avastin - so the fact that this thing is shrinking at all is good news!

Of course - I want it the hell out of there. But it's not growing, no other tumors are coming back and things "look slightly improved".

We'll take it.

Loving you all back,

Mary