Thursday, June 5, 2008

WANTED:One Radiologist

I tend to be a bit of a control freak. The fact that somewhere out there is someone who knows the answer to all my questions and they aren't telling me makes me crazy. If I had the radiologist's phone number or address I would so be on his doorstep, disk in hand, asking him to share the answers with me. Sadly, all I have is me and my computer, Dr Google, a bunch of images from today on a disk and my imagination. Not a great combination. I think I know what I see on some things, but given that I don't have a bunch of initials behind my name I am not going to publish my novice speculation here.

So, if somewhere out there, right now, is a radiologist, willing to work for cold left over pizza, please give me a call. Otherwise, I will be waiting until next week to get the results. I can't tell you how much I hate this.

Today was long and rough. We had a horrible moment first thing at the clinic. Miss Vicki, Mandy's favorite nurse, accessed her port. She has done this every single week for the past three months and Mandy has grown as comfortable with all this as we could possibly hope. Emla cream on the port numbs it and the accessing really doesn't hurt much normally. Today, for some reason, it hurt. Badly. She looked at me, from behind her mask, with huge eyes, filled with tears and said, "It hurt, Momma." The look in her eyes absolutely broke my heart into a million pieces. It was utter betrayal and fear.

So, I had to think fast and threw myself under the bus. Normally we go to clinic for a finger poke, the nurse put the Emla cream on and we go have lunch and come back. So, normally I don't put on the Emla cream, just because that is the way it works out. Today, I put it on at home because of the MRI. So, when she asked why it hurt and was so upset I said, "Because Mommy put it on wrong. I am so sorry." This was a complete lie, and I don't think she bought it. However, my hope with this suicide mission is that she blames me and next week and for most weeks thereafter, when the nurse does it, she won't be anticipating pain. I am already afraid we have lost all of her tiny comfort zone, but hopefully, my big fat lie, will help ease the newly regenerated anxiety next week. She has a nasty rash above the port and we suspect that is the genesis for the pain. Not sure what it is, except that it is topical. We suspect a reaction to either bandaid adhesive, the Emla cream or the Glad Press and Seal, used to cover the cream while it does it's numbing job.

Her bloodcounts were down this week. Thankfully, the magic number where they will withhold chemo has now been dropped to an ANC of less than 500, so we made counts and got chemo today. She did need Ativan afterwards as she was feeling yucky in the tummy. I suspect it was because she hadn't eaten anything since 8 pm the night before and had all those meds today. So she has had an awful lot of drugs coursing through her system today.

The Doc came in to do her exam before the MRI. She now has no reflexes at all in her lower extremities. Nothing at all from the knees response at all. Most likely Neuropathy from the Vincristine(one of the chemo drugs). Could be something more sinister, but doubtful and hopefully not. She is also down almost another pound in weight. She lost another .7 lbs in the last 3 weeks.

So, all in all a very exhausting and draining day. And now we wait. And wait. And wait. And wait. Still taking applications for an in house radiologist. Any takers?

Thanks as always for checking on her. Love to all~


Deb Kirkpatrick said...

Thinking of you as you are waiting results from your Daughters Mri.
I started reading your daughters site about a week ago. I also have a daughter with a (stable) optic glioma.
Deb Kirkpatrick

Even God Is Single said...

I came across your blog from Jennsylvania. Wanted you to know I'm praying for Mandy. I have only read this one post, so I don't know what kind of cancer she has.

I am active in the Leukemia and Lymphoma Society's Team in Training, so your blog caught my attention.

I'll be checking in. Be strong!