Friday, April 30, 2010

Part II

The door slides open. I imagine the sound track it should be making, and in walks Dr M. I am so thankful he's my doctor. Of all the neurologists I've worked with he is the most agreeable, accessible, and from what I can tell knowledgeable. He never rolls his eyes when I tell him I've read something on the internet. He takes my concerns or even just opinions seriously. And he is very willing to meet me where I'm at and work with me from there.

Today I'm really excited because I have been reading some new things I want to discuss. First he pulls up the MRI scans and we go over those noting any new areas of concern and checking on the old ones. A new one in the brain stem seems to correlate with the swallowing issue I started having a few months ago. He explains the other areas of interest as we go up the brain stem and out the top of my head. I had tried really hard to hold super still,  and also to keep my eyes shut so my eyeballs would not be rolling around. I can't remember if I did a good job or not. I was too caught up in my research and wanting to share it with him. He finishes with the pictures and I start right in.

"So I was doing some research and came across the work of Dr Prineas, the Australian pathologist. In reading them it seemed to raise the question of MS being an autoimmune disease, or at least challenge the current way we think about MS."

"Well, its is pretty well established that the damage comes from the bodies own doing. All the working therapies out there are predicated on that and they seem to work."

"But not for everyone. If interferons really work, why don't they work for everyone?"

He sat and thought.

"Dr. Prineas' studies seem to point to damage occurring BEFORE the immune system kicks into gear. Meaning it comes from somewhere else. Could it be that axonal damage comes from the macrophages death possiby due to a misstep in a protein to estrogen conversion. And their death results in myelin loss and the T cells and B cells just show up to do a mop up job?  And that by the time we see any activity it is always the immune system caught with the smoking gun. This might explain the gender inequity and why it is far more common in women than men."

He sits back and closes his eyes. Dazzled by my research capabilities I'm thinking.  He opens them, then goes  to his computer and starts pulling up files. He mumbles something about lymphocites and some other little guy. I just watch him work. He seems to be in his own little world and I don't want to interrupt him or ask questions. I catch something like 'how can this be, in a few months, she has discovered what we have not deduced in a life time of work?'

"I have heard of Dr Prineas, and his work is interesting. You bring up some fascinating points.  But we'd need Dr. Prineas to answer some questions.What is he up to right now?"

He clicks on  a little tab and a live camera feed pops up.

"There he is" Dr M exclaims. "It looks like he's going somewhere with that suitcase. Where is he going?" He seems to be talking to himself so I just listen.

"What's that in his hand? Maybe  a ticket. I'll zoom in. And enhance. And gotcha. Its not a ticket. Its a map with a route marked. Looks like he going to San Francisco.  But why? What is in San Francisco?"

He pauses,  his chin resting in his hand.  He jumps forward again.

"He dropped something. Let's take a look at that." Once again he zooms in. It appears to be a letter. From his daughter.

"Looks like he's going to visit family. Maybe we can intercept him at the airport. Can you take a trip to San Francisco? I think you should explain your hypothesis in person. I think the puzzle pieces are all there and Dr Prineas will be able to help put them all  together. We can set up a meeting at the French Laundry. This may be the discovery of the century. I think we'll need a good bottle of red and something tasty to celebrate it."

I tell him no, I can't go to San Francisco tonight. I have more research to do. And I am making tacos for dinner. But he needs to go. He can conference me in and I'll have a power point presentation to show both the doctors by dinner time.

He congratulates me, thanks me, then gathers his papers and laptop and rushes out the door. And I think what a fitting end that little swooshy noise would have been.

OK. So we've been watching 24 lately and I decided to borrow a few tricks I picked up. Especially Shane's favorite. The Zoom in and Enhance method. But some of this was true. When I get the final debriefing from Dr M- who first has to be debreifed by the radiologist- I'll sort the fact from fiction, if I can, and lay it all out next post.

Wednesday, April 28, 2010

Brain Day Part I

I had my MRI and neurologist appt yesterday. I am waiting to get the full report from the radiologist so I figured I could string out the day in a few installments.

In the morning I'm excited to drop off  the kids with Grandma and head on down for some "me" time. Me time being me, by myself, lying down. I can't get up even if I want to. Which I don't. I like getting MRIs.
I fill out the paperwork, then pick a chair by the fire and settle down to read the paper.
They call me soon  and give me a dressing gown, only it's pants and a top. And only like 10x my size. Luckily it has a drawstring so I cinch it as much as I can then wrap the cord around several times and am good to go. Next they put an IV port in. I liked the way they did it before. Just come in and give me a shot half way through. But I guess they found the scans were more stable or something if they didn't have to move the person and could just press a button to inject the contrast agent.
Last time the guy putting it in didn't get something quite right and when he tested it blood went squirting all over the floor. This one goes  just fine, with only a small bruise leftover  this morning.

So then we go to get set up in the machine. I lay down on the sliding bed and the assistant coveres me with  a heated blanket. I instantly feel realaxed and cozy and am looking forward to some"quiet time".The technician informes me that they are no longer able to use the music playing headphones, just some small ones for ear protection.

"That's ok. I usually don't have music with mine anyway."

"So you won't be able to talk to me then?" I ask hopefully. It was always kind of jarring when you are just starting to relax and then "OK This one's going to run about three minutes." Or  six minutes. It kind of interrupts the 25 min of meditation I try and get.

"Oh, no. I'll be able to hear you ,and let you know what's happening."

"Actually, I don't need any updates or anything."

"You have kids?" he asks.

"Yep. Four."

"I figured. Usually the people with kids just want quiet."

"Ok" he says, placing the squeezy alarm/eject thingy in my hand and adjusting the IV bag. "I'll get out of your hair and we'll get this done."

I lay back and he straps the head cage across my face.

"You're not claustraphobic?" he asks.

"Nope." I close my eyes." I'm good."

He leaves  and I feel the table slide into the big magnetic tube. Its dark and cozy and I could see how someone might get freaked being in there. But I'm glad I like it.

A few seconds go by and I hear the whirr of the machine with the familiar tweets and knocks. These first ones make me think of little StarWars ships firing at the Death Star in short little bursts.  Pew, Pew, take that Vader.Then along comes the deeper laser beam in long steady pulses. The big ships are coming.

The beeps give way to a series of knocks. Usually  a knock in the middle of the night heralds a wet bed or sick child. Something that requires my immediate action and gets my adrenaline going. But this time I know I don't have to rush to the door and am able to stay calm. And relaxed. I think about how nice it is that they give me warm blankets. I time my breathing to the rythm of the machine. Then I add a prayer.

 Lord Jesus Christ (Knock) Son of God(knock) Have mercy on me (knock) a sinner (knock).

The knocking speeds up and my respiration matches it.
There is a pause. I hold my breath, waiting for my cue. Instead, I feel a cool sensation in my left arm where the needle is. It radiates up my arm and I know they just injected the gadolinium and we are doing the second part of the scan. I'm glad they did not get to interrupt and tell me "Ok, you're going to feel a little coldness in your arm now."

The knocking starts again and I settle down to enjoy the little bit left. I'm thinking fresh warm blanket would be just nice right about now. I wonder if they would bring me one if I asked. But too soon, the door opens and they are sliding me out and unlocking my head. They remove the IV and wrap it tighly with a cotton ball and stretchy tape. She hands me my locker key and I'm glad it has my locker number written on it as I have no clue which one I had chosen. I retrieve my shoes and clothes and get changed. I'm still kind of groggy and looking in the mirror, I regret not having brought a brush. Oh well. At least I brought deodorant. They told me no make up, lotions, or  perfume so I always bring some to spruce up for the neurologist appointment.

Back in the car I realize I  have an hour and a half before I see the doctor. Shane couldn't come today so we could have lunch and I didn't want to eat out alone. So I get my snacks out and finish the newspaper and solve some word puzzles. I'm too smart and it doesn't take long to solve so I drive over to Trader Joe's and contemplate going in to get a little something to round out my lunch. Like caramel corn. There is an espresso stand across the street and I think that would go well with a treat. In the end I decide to drive up to hospital and wait in my warm cozy car, listening to music. It is made cozier by the downpour that is just starting. I guess  a hairbrush wouldn't have made much of a difference. So I opt for some lipstick instead.

I brace for the rain and run to the building. On the entrance a sign announces  "Tully's Coming Soon". I'm so glad. Ever since they moved to the new building I always lament the lack of a coffee shop. I can schedule that into my plans for the next appointment.

The nurse comes and has me do the usual walking test, which I always pass with flying colors. I think about asking her if I can skip, just to make it more challenging. With my luck I'd probably trip and do a face plant and the rug is kind of rough and would probably leave mark, so I don't ask.

She weighs me. I'm happy with the numbers. Then she subtracts three pounds for my jeans and sweatshirt. I say I liked the first number better. She laughs and writes down the second one.  She takes me into the room and takes my vitals. Everything is good. We chat a little. She adjusts the window shades to let more light in.Then she says the doctor will be in shortly and goes out the star trekish sliding doors. I wish they could put something on them so they would sound high-tech. A nice "swoosh" with a little suction sound at the end. That would be awesome.

I remember I didn't put my earrings back in yet and fish around in my purse for them. They are pretty green and gold ones Shane bought me on  his last New York trip. I like that his tastes are more exotic than mine and furnish me with things I would not pick out on my own but really like. I fumble finding the left earring hole. I feel a little rushed and panicky,  like I don't want the doctor to think I dressed up or anything and that I always just look nice and put together. So what if  I have holes in my brain. I just like to take care of what I do have. While I have it.

I get the earring in and sit back to wait. There is nothing to read so I enjoy the view out the  window. It's so pretty with all the green trees. Then the sun starts to peek out adding some gold to the landscape. Hmm. Kind of like my earrings.

Thursday, April 22, 2010

Girls and Boys

Today Audrey asked if she could have a peice of fabric from the sewing  chest. I said sure. It was funny that it a  few yards of rayon I had bought when I was 16 to make a skirt. I never did. But I liked what she came down stairs with an hour later.

A skirt and top for herself.

And matching ones for Kateri. The back seam had a little wardrobe malfunction going on, so  made Kateri put on pants instead. I thought both oufits were pretty cute. I might just get out the machine and let Audrey use that.    She did these by hand.
A few minutes later Kateri lost her loose tooth.
 Yesterday we went to my sister's for a sister get together and birthday party. They are re-doing the front lawn and had torn up all the  grass. And, being Seattle, there had been plenty of rain, so the yard was one big mud pit. Which the boys loved.

They had fun slogging around in the thick goo. And then decided it would be really fun to ride bikes in it.
Some areas worked.
And some didn't.

But a great time was had by all. The boys with mud. The girls inside with the other eight children. And coffee. And brownies.

I'm looking forward to more get togethers when the weather is nice.

Tuesday, April 20, 2010

The Good and The Bad

So the good news is, people at art class are starting to get rid of last year's books. And then some.

The bad news is I need more book shelves. (Or is that good news?)

The good news is I now have a matched set of candle sticks. The bad news is, I have one less wine goblet. I hope this does not portend anyone's untimely demise. But if so, we're ready for a vigil.

I could take a picture of my laundry room. Then I could title this post the good, the bad, and the ugly. But no one wants to see that and I'm too tired to go upstairs and snap a photo. So I'll call it the good, the bad, and the kind of tired and really ready for summer vacation. But that is kind of long.