posted by Mary Lello, Saturday, September 19, 2009, 5:46 AM
We saw Dr. Weisburg yesterday and got the bi-monthly infusion of Avastin. I have to say out of all these months of slogging through all this this week I am truly hopeful and "up"!
Dr.W showed us the most recent MRI and then pulled up the picture from the April 22nd MRI. In April that tumor had shape and form, you could see the swelling it was causing and all that white juju stuff around it. The one we had done last Monday shows a "shadow" for the tumor. It's a slightly different color gray then the rest of the brain picture, there is no real shape to it and no white juju stuff!
I have a few favorite words that I just like the sound of: "crepuscular", "juju", "Sisatobell Lane", and "necrotic". This is my newest favorite word. NECROTIC - it means "breaking apart", "dead or dying tissue". Weisburg said "this tumor is now necrotic". YEAH BABY!!!! She also said "Jim, you are now considered a survivor, you are now beating the odds and entering into the "making it" statistics". Remember this woman does not say things that she feels will give false hope or that she doesn't believe she can back up with her medical knowledge.
GOD, just writing this I am smiling from ear to ear. This is amazing news! That tumor no longer has the upper hand!
Our next challenge is to not just survive however, I/we want to THRIVE! We want use of the right arm and hand again, we want that leg to bend at the knee and climb stairs normally again, we want to ride our bikes together on the roads again or xc ski or trail run with Ella. And this week I'm saying... and WE WILL! I don't know how long it will take but we will thrive.
Besides, we have all kinds of incredible healers working with us doing alternative therapies; Jerry Sanders - our brother in law who is absolutely amazing and astounding! With his guidance I'm seeing big changes in Jim and truly believe Jim can heal all of this. We have Mary Chaney coming and doing acupuncture specifically for brain tumors for Jim and getting that right arm to have more flexibility while the needles are in. We have Jane Burdick doing Feldenkrais as well as meditating with Jim and keeping him involved in the Portland Buddhist community that is so very important to him. We have amazing care takers coming every week to be with Jim, taking him to lunch, reading aloud to him, fixing him food, sitting with him during his Avastin infusion and just performing wonderful acts of love in taking care of him while they are here ..... every week! And we have an amazing circle of friends who will just stop by for a beer or to say 'hi" or to see if JIm wants a ride in a 1948 Willy Jeep.
How can you NOT thrive when surrounded by so much healing love of so many people? I mean, really!
I'm not sure where this phrase comes from but all I can hear right now is "Come back to me Jimmy D., Jimmy D."!!!!!
I want to thank all of you who sent me your songs. That was so much fun for me and every single song got me crying. Even my mother sent me an old hymn that I had never heard (my dad was a minister and we grew up in the church so I was surprised at a hymn that I didn't know!). The verses were just so beautiful and rang true for me. I'm so glad to learn that many of you have a song you carry.
Now maybe it's time we all just sing and dance to our songs?!
As always we want you all to know how we are indeed loving you all back,