Tuesday, October 23, 2007

Not much to tell...

First, thank you so much to all of you who have posted comments, who are praying for me, and who are checking here for updates. It touches my heart so much!

My oncologist called this morning to say that the ultrasound found nothing. At first, this does sound like a hallelujah, but...

I told him how the technician really did not ultrasound the lump, which was hard to find with me lying down and the tech not paying attention and only doing the U/S for 30 seconds!

My doctor said that it is probably a fold of fat that bunches up when I am sitting down. I said, "Well, I know my body and this is a knot. And it is much more defined when I'm standing up, not sitting down."

So, he said he'd schedule another ultrasound to be done with me standing up. I can tell he thinks I'm questioning his judgment. I think he feels that some of my symptoms are probably anxiety. I've been down this road before.

He is not "me," and doesn't know my history with doctors telling me, "You're fine! Get on with your life!" and all the while, I had a big non-union fracture of the C1. My past dealings with specialists do not make me accept things easily. Especially if I'm told a lump doesn't exist when I feel it, my husband feels it and the doctor feels it. Does this make sense?

This is what we, as patients, endure, having to make our "care" happen, having to work at self-advocacy, having to be a squeaky wheel when in fact, we are very sick and have no energy for it. Sigh...

Today, I have been very, very weak. I haven't felt up to much. Just the job of getting things ready to go for surgery in less than a month (3000 miles away) and trying to get closure on this new manifestation is enough to lay me low, I guess.

Today, I called L. who will be having surgery in NY the same time as I am. We talked easily for about an hour (our first phone chat) and I feel so much better about going there alone for this. It's not easy...but God has a plan. Just one foot in front of the other!

I keep feeling the spasms in the center of my chest. Not precipitated by anything that I notice, they are flutters that sort of interrupt my breathing. I think they are spasms or respiratory myoclonus and my prayer and hope is that when I have the fusion early next year, it will alleviate these symptoms which are not painful, but are bothersome and tiring.

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