Today’s the day I get to go and take a (constantly interrupted) nap in that lit up tube with ear plugs firmly in place to protect me from those odd sounds. Oh the rattling, and clicking, and buzzing, and beeping! Oh the noise, noise, noise! How strange those MRI’s are!

Today’s the day that I get scanned from head to tail…but I won’t get results back yet. No, the results won’t come for some time (October 12th) and even then it turns out that the results won’t mean much. Here’s what we’ve learned in the last few weeks…

The MRI won’t tell us much. The scans could look horrible, they could look terrible, and it might not mean a thing. Turns out, though I don’t understand it completely, that the MRI’s don’t actually tell us much of anything. They can’t differentiate between dead tumor, cancerous tumor, and radiation damage. Essentially what we’ll get tomorrow is a new post-radiation baseline that we’ll measure from from here on out…unless of course it sees tumors in new places (that’d be a bummer).

All the data you read about online is dated. With my diagnosis there is very little information out there because 1. its rare to have a brain tumor start in your spine. 2. studies rarely look at a level three tumor (they’re going to study the level fours–what they originally diagnosed me with). 3. The oral chemo that I took is relatively new (last seven-ish years) and therefore is not accounted for in the data. SO, when many studies show that people with my tumor can and do make it five years before having their first relapse that is not taking into account the fact that we now have a new tool for fighting this type of cancer (the oral chemo). This is good news. Essentially what we’re saying is that medically speaking there is good reason to think that I’ll go another five years before having to deal with this all again…even better news, however, is that all along the way we have not followed what was medically assumed! We’ve far exceeded medical expectations in the recovery process…why stop now?

Turns out central nervous system cancer does not spread outside the central nervous system. This is great news too. This means that, unlike many other cancers that can and do spread anywhere, I do not need to worry about troubling symptoms in the rest of my body. I only need to stay aware of my neurological symptoms–numb feet, the function of my limbs, headaches, etc.–the exact things that I’m already becoming hyper-sensitive to.

The plan at this point is for MRI scans every three months for the first long while. Those scans will grow further apart as the years go on. The reality, though, is that it is the neurological symptoms that will most likely be the tell tale sign of good health or cancer growth.

In general the recovery process has gone so well, my energy level has improved so much, etc. that we’ve felt very positive since we finished radiation and chemo on August 22nd. However the closer we draw to the looming October 12th date the more nervous we get. What will we find out? Will it be anticlimactic and we’ll find out nothing? Will it be good news? Will it be bad? (if its bad I’m buying myself an ipad) To add to the worry, this week, my first week off steroids post-radiation (I’ve gone off steroids a few times only to go back on later), I’ve started to have some worse symptoms develop in my legs. My ‘good’ leg has started to have greater numbness from the knee down and incredible numbness in the foot. As a side note there is also some kind of freaky infection in my middle toe on that foot and its swollen like a little smokey sausage! Any negative changes always cause tension and worry.

All of this is to serve as an update and as an invitation to keep us in your prayers! If you here any creepy clicking, ticking, and beeping think of me today. Gotta love those MRI’s.