Heavy Stuff

At the end of February I had what felt like appendicitis. After spending a lot of time in emergency, having an ultrsound, a CT, two pelvic exams and a ton of blood tests, I got to keep my appendix. I had a follow up appointment with a doc this week who gave me the wonderful news that they want to remove the pesky cyst that gave me all the trouble. And maybe the ovary it seems to have eaten (apparently the cyst is indistinguishable from the ovary). And maybe a few other parts of me depending on the tests they will do once they open me up. If all goes well, it'll be a simple laproscopic surgery and I'll be home the same day. If it gets a little more complicated I'll be in hospital for 3-4 days. Any more complicated than that, well....I'll have the Wookie sign in and tell you where to send flowers.

Actually, I'm fairly positive about the whole thing. For one thing the blood tests were only slightly off kilter and can easily be explained by a whole whack of stuff. For another thing, this will probably eliminate any more episodes like the one I went through in February. And I can't wait to find out what I'm supposed to learn from this experience.

I am very confident about the outcome because I have some inside information. I told one of my producers at work about what's going to happen and he said he and the kids (Dylan and Gabriel) will light a candle at church for me and offer up some prayers. I will have two little boys age 5 and 7 saying prayers for me. God listens to kids' prayers, right? It brought tears to my eyes of course when Terry told me this and how the boys pray. I'm in very good hands.

The doc who gave me the news this week was one I had never met before. He was very nice, appreciated my sense of humour, and said he would like to be there for the operation, "Because....", and his voice trailed off as he was trying to think of a nice way to say something. "Because you think it will be interesting?" I offered. "Yes", he replied rather sheepishly. "I am hoping to do a fellowship in Atlanta this year specifically in this area of surgery." Of course I thought that was a hoot. A man after my own heart. Here he's thinking to himself, oh boy, I want to see this one, but doesn't want to seem insensitive to my concerns.

The doctor also asked me to sign a whole whack of consent forms including one to allow them to take pictures - of anything interesting they find. Sure. Whatever. But I don't want to see them unless there's an alien in there or something.

Unbeknownst to me they had planned on doing this in June, but there was an opening April 30th so they said sign her up. As soon as I got home Wednesday I looked up what I needed to online. Mostly I wanted to know about any correlation between surgeries and relapses. The jury's still out on that.

I am actually typing this up on Friday night, but not posting it until after I tell my folks. I know, I know, I should have told them by now, but I wanted to wait for the Wookie to come with me to tell them. It's just another thing for them to worry about and my mother feels guilty enough about all the genes she's passed on to me as it is.

Now I have to make a few lists of things I need to get done before the surgery, like making a few more meals to have in the freezer, packing a bag for the hospital if there's an extended stay, and I should do up my will. That's something I've been meaning to do for awhile anyway. and I've got to do some heavy duty biking over the next few weeks as I will be out of action for at least 4 weeks after. I did tell the doc I have to be able to get on my bike for the Bike Tour in July and he thinks that's do-able.

So it's now Saturday afternoon and we told the parental units what's going on. Of course my father and I both have wicked gallows-type senses of humour which does little to make my mother feel good about the whole thing. But we talked about getting my will done, power of attorney, that sort of thing. The only other thing I hadn't thought of was the whole living will thing; you know, the directives if I'm left brain damaged or brain dead. They know what I want done if I don't come out on this side. Spread the organs around to whoever needs 'em and can use 'em, and the rest of me goes to the medical students to learn from and make fun of. But if I'm left with no consciousness, who decides to pull the plug? And how long do I want them to wait for a sign? Those are the things I will attend to this week.

So who wants my bug collection?

S.

Want to know more about the "Ovary Necklace" pictured above? Check out this link.

I'd Like a Dinosaur

When I was 10 I briefly thought of becoming a geologist. Or an archaeologist (the Leaky's work in Africa was very well publicized at the time). Or a ballerina. OK, not really the ballerina. The desire to be a geologist didn't last long but I have always been interested in rocks, gems, and everything to do with fossils. I have even collected a few text books on the subject when research was done with books and not the internet.

The Wookie's father is a retired geology professor, though he's not really retired. He's still traveling round the world, doing tests, and helping some foreign governments figure out stuff about the earth. It's quite interesting work, really, and I find it fascinating. The other night, I told the Wookie that he should ask his father to bring me back a dinosaur from his latest round of travels. Actually, last year, the Wookie gave me the coolest birthday gift I have ever received. A megalodon tooth!!! That was a big fish. I have a few other fossils in my collection of stuff, so I'd really like a dinosaur. Probably not going to happen, but a girl can dream, eh?

I envy Shawna, as she lives near the dinosaur capital of Canada. Those monstrous creatures we have come to know as T. Rex and Albertasaurus used to traipse around her neighbourhood. Very cool. In Nova Scotia we have, and continue to find, mastodon teeth and the occasional mastodon skeleton. Because we have the highest tides in the world, we have a unique and eroding coastline that is continuously giving us back evidence of other creatures that inhabited this earth, including the footprints of the earliest known amphibians. I have stood on those prints, imagining the real life size of the animal that made them (about 6 feet long). Later this month, a new interpretive centre will be opening up to commemorate the Joggins Fossils Cliffs, which have been nominated as a UNESCO World Heritage Site.

There is an island south of the province called Sable Island, known as the graveyard of the Atlantic. It is literally a spit of sand about 8 miles long and was created by the deposits of grit left by glaciers moving through the area. It is only inhabited by a few researchers and scientists, about 300 wild horses (called Sable Island Horses), colonies of breeding sea birds and birthing seals. The sand is composed of many minerals including garnet. When I found out about that I did a little research looking for garnet deposits in the rest of Nova Scotia. We apparently do have a lot of it though it's of an industrial quality rather than gem quality (think sandpaper). I have even heard about a beach in this province with purple sand and seen a sample of it. It looks like grape Kool aid crystals.

I have a lot more exploring to do this summer while training for the MS Bike Tour and I promise to post photos. Especially if I find a dinosaur!

S.

You're It

So the other Shawna, at Nervus Rex tagged me with something that makes me have to post the pic I use as my computer wallpaper.....


Thanks so very much.

We were on our way to a friend's house to go swimming and stopped at a yard sale. The kid had this pair of Spiderman glasses I just had to try on and the Wookie (damn him) had to take a picture. I used to have the moon wallpaper on the computer but last year the Wookie installed the above pic instead when I got a new hard drive...

Revenge will come N.Rex, just you wait.

Now to tag a couple of unsuspecting bloggers.....

Linda at Braincheese

Diane at DJ- A Stellar Life

S.

Charles' Blog

This is just a note to let you know that Charles' MSBpodcast is up and available for download with me reading one of my previous posts. And as usual, Charles has selected some really interesting and appropriate music to go along with my narrative.

I have been trying to formulate a new post about biking and brain power and at the same time deal with a computer glitch or two - the tech guy who answered a recent call took me by surprise after I told him I couldn't connect to the internet. "What did you do?" he exclaimed. After a second he chuckled and I said "You sound just like the guys at work". I have posted about my electronic troubles at work before.

Back soon!

S.

Another Piece of the Puzzle

I forgot to mention in my last post that I asked Dr. Murray that all important question about frustration: Do he and other researchers get frustrated with not knowing the unknowns of MS? Short answer is yes. Longer answer is that's why so many researchers continue what they do; because they want to know the unknowns.

Now the stuff that I've been really thinking about this week, especially since my post on Wednesday:

It appears that MRI is a good way to help diagnose MS, as a way to confirm a clinician's observations and a patient's symptoms. But there is so much more going on in our brains than can be detected with this particular machine.

We (not me personally) have discovered that normal appearing white matter (NAWM) is affected by MS, even if it doesn't show up on MRI - hence the name normal appearing. There may be axonal damage or destruction. It appears that this has greater significance to the prognosis of an individual than the number of lesions.

So how do we measure the axonal damage? We can only measure chemical processes in the brain and that includes chemical volume. All week I've been thinking about this. I should have asked someone first as I didn't know what to look for on the net...until I had a lightbulb moment. We need a mass spectrometer of course. If you've ever watched an episode of CSI or some other criminal/forensic show you'll know that a mass spectrometer is a machine that measures the chemicals in tissue samples. So we just need a mass spectrometer big enough to stick our heads into and we'll be all set. (In discussing this with the Wookie tonight though, I realized that since with a mass spectrometer you have to vaporize the tissue sample then shine a beam of light through it, there are limitations for its live human use.)

A little more wondering about that, and if someone has undertaken the task, led me to discover that again, I have no original thought. They've had Magnetic Resonance Spectroscopes since 1973! An MRI -type machine. Who knew? Apparently everyone but me. But it seems that it hasn't been refined enough yet to be an accepted standard modus operandi for determining how "progressive" or not your MS is. *Sigh*

It's a similar type of machine as an MRI so it's big and costs a lot of money. But the applications for its use are incredible. Imagine having a picture taken of your body instead of having blood drawn to determine if your cholesterol medication levels are too high or two low. Or if the chemo is going to the places it's supposed to go to. Or if your brain is producing enough serotonin so you're not depressed. Or if the axons in your brain are severed and producing a tell-all chemical to indicate their dysfunction.

There are some of these machines in use around the world. I just can't seem to find too many of them. There was even an article published in a neurological journal of some sort about how these machines can be used for people with MS, but I can't read the article without joining or paying for it.

So what's the point? The point is that until recently we didn't know that stuff was going on in NAWM. We suspected it. If you cut your finger, your body goes through a whole whack of processes to detect intrusions, intruders, and bad bacteria; then it aims to clean up the wound, seal it, and then heal it. All of that activity takes a number of chemical processes to get to completion. It stands to reason the same things happen in our traumatized brains: chemicals swishing around in there as a result of the disease process. Too much of one chemical shows that axonal damage has occurred. Too much of another reveals inflammation. You get the idea. So this really shows that like MS involving entire families and not just an individual, it's a whole brain disease. But again, "What's the point?" *Sigh*

If I were a pessimist, I would say big deal. That just shows us that MS is a bigger question mark than before. Now we have to worry about the stuff we can't see happening.

Well, firstly, if MR Spectroscopy is as good a tool as I think it appears to be, not only will an earlier diagnosis be possible, but earlier drug treatment can be implemented if your brain shows a propensity for axonal loss.

Secondly, it can give us a better picture of any drug's actions in the brain. Is it actually preventing neuronal damage or loss?

Thirdly, it's another piece of that giant puzzle. I'm not really sure where the piece goes just yet, but it's another piece just the same. After all, the more you know about a problem, the easier it is to figure out. At least, I hope it is for all those neuroscientists.

S.

Bits and Bites

A co-worker was telling me today about her husband's back problems and other ailments including the trouble with his rotator cup. She said it a second time so I knew I hadn't misheard her. When I said, "You mean rotator cuff", we laughed and she said "Is that what it's called?" That led to other mis-spoken words. She told me about going to the mechanic and saying there was something wrong with the "cadillac converter". Apparently everyone at the garage had a good laugh.

In other trivial things over the past couple of days, I was preparing my lunch for work and slicing some strawberries. I discovered that on the inside they look remarkably like brains. So I took some pictures. Cool. Then I started slicing the carrots, but realized the pics of them wouldn't come out well as they needed a contrast and I couldn't find my food colouring.




I was also wondering about my flour beetle in its bug observation container. So while wondering about what to feed it and looking on the net for information, i discovered it's not actually a flour beetle. It's a warehouse beetle. Not really a big difference between the two unless you're another beetle, but that means I have to change its name from Guy LaFleur to Bea Wear. He, she, or it, is the beige worm like thing in the bottom right corner of the flour.

After reading Joan's post on A Short in the Cord about hearing peepers while outside last night, I phoned the Museum of Natural History today to see if any peeper reports had come in yet for Nova Scotia. Nope. But the curator I spoke with said he's expecting the first reports this weekend from the south-west part of the province. We've had a westerly wind since last night, milder temps, and westerly winds forecast for tomorrow as well, so I expect things will begin to warm up presently. The snow is finally going.

On Monday I had a meeting with my neurologist and one of the clinic nurses to take a look at the MRIs I've had for the drug study I've been in for 10 years. No significant change in the pics, which is a good thing. Of course I asked why we still look at the MRIs if they are only good for diagnosis and the number of lesions doesn't statistically correspond with clinical symptoms. To see if the meds are working is the answer. That's the simple answer. I've been reading and trying to decipher technical stuff for the past couple of days so I can post something about this, but my brain seems to fog up after a few minutes. too many big words, I suspect. Dr. Murray did say that a good clinician is critical to assessing MS progression until we are better able to determine the chemical changes going on during an attack, a relapse, etc. And he also said that the next step in MRI-type picture taking will be actually measuring the chemical changes so that we won't have pics to look at but graphs.

So the question remains, why don't the lesions correspond with disability or clinical symptoms? it turns out there's more going on with those lesions than meets the eye, or MRI, in this case. And this is why they are trying to develop a way to measure the chemical changes going on. More of one chemical or process, the worse it is for you, or the better. And even though we can only see individual lesions, we know that MS is a whole brain disease. Well a white -matter -of- the -brain disease, mostly, and we just can't "see" physically or chemically what is going on. So while some processes are going on in a specific lesion, maybe the rest of your brain is trying to deal with it as well. We do know that early on in the disease there is a cycle of repair/relapse/repair/ that gets harder for the body to continue as the disease progresses. You can only replace the duct tape so many times before the wire is toast, then axonal damage occurs. More chemical reactions going on with that and we can't see that yet, either.

What we need is a spectrometer for the brain. anyone wanna give that one a try?

S.