The first test was a complex MRI (one of my personal favorites) that involved setting up an IV with mix of several solutions for reading levels of activity in the tumor region of my spine. It’s a long test, about thirty-five to forty minutes and they do several passes. First pass is to get an accurate measurement of the tumor itself … like actually measuring with ruler, height, width, depth.

Then they inject you with a contrast so that blood movement (or non-movement) can be measured accurately. The next injection is to see the amount of oxygen that the tumor is (or is not)consuming, then one for the amount of blood sugars that the tumor may be consuming.
During all these scans … and I mean the entire time, you can’t move a muscle or the process basically has to start over. It’s important because when the Doc reads these scans they have to line up with older scans, and with each other. This is the reason they tattoo’d me in the beginning … so that alignment can always be reproduced. Any movement does two things. One is of course it makes it almost impossible to line up with other scans and secondly, the images blur when you move.

So if you want to get out of that tiny little tube … you’d best be still. It’s a tough one because it’s kind of like laying down in an empty toilet paper roll made out of metal! It’s tight (not for claustrophobics), very noisy, and there seems to be an inherent lack of air movement. Not a comfy situation. Oops, and can’t fall asleep either (although I’m not sure anyone actually could because of the noise). People tend to move in their sleep and again, that’s not a good thing in this situation.

My guess is that I spent about an hour and a half to two hours … not fun.
The next thing was to get a series of chest x-rays and a few other what seemed to be random bone and joint pictures. The purpose of these is to check and see if there has been any cancerous metastasis. Basically, they’re looking for cancer they may have spread or took up residence somewhere else in my body. The most common spots for this to occur is in the lungs, chest (especially the rib cage), and joints. In chondrosarcoma, the joints are important areas to keep an eye on.

By the time I was finished with that I was ready for some fresh air. We took a walk outside for a few minutes and looked at the new building MGH is almost finished with. When it’s finished it’ll house most of the equipment I’ve been talking about since the beginning of the blog with the exception of the actual proton machine which requires the better part of a building on it’s own.

We went back in to talk with Doc Delany and get the scoop on the results of the days testing. That’s one thing they have done really slick, by the time your scans and x-rays are done, the doctor has received, and examined them, and has had the time to study and compare results. MGH has a huge file on me by now (yeah, it’s impressive, four big, stuff to the gills three rings binders and a half of shelf of DVD’s of every scan they’ve ever done of me.

He came to see me almost immediately ,which was great because after a few hours of this stuff I was beginning to wear down. I don’t like getting poked and prodded to begin with (well who does ?), but afterwards I’m always ready to bolt out there. Honestly, had I not promised to see this through the entire process, with Doc Delaney, I probably would’ve left the building right then and there.

Doc had positive, and not so positive things to say. For one, the measurements of the tumor show that it hasn’t grown any … that’s a good thing. We don’t want to see growth. On the other hand, it hasn’t shrunk like tumors traditionally do. Now that’s partially because it’s bone cancer and shrinkage is limited, but a little bit would’ve been nice to see. The key to it shrinking a little is that with each tiny amount it might have shrunk, the possibility of returning function would have increased.

Now I can tell that leg movement, nerve and muscle function has not gotten any better over the last six months … as well as I can say that it hasn’t worsened either. So it’s kind of a wash out there. No better, no worse. In case, this is a winning situation. I didn’t really expect to get much better … my expectation was to prevent it from getting worse. So I’m pretty comfortable with this report.

All the x-rays came back clean … this is really good (best news of the trip). My problem here is ( and I was well warned before excepting this route in the beginning), that if the cancer pops up somewhere new, there can be no more radiation treatment for me. They don’t even like doing x-rays and MRI’s on me because my system is pretty much saturated already. Next time, it’s surgery at best. So this is a really good thing that nothing new is rearing up and attacking other bones at the moment.

The blood and oxygen intake of the tumor was not quite as cut and dry as we all would’ve liked. While the tumor has not entirely stopped absorbing these two things from my blood stream, it had greatly reduced its intake by ninety-five percent. Good and bad you might say.
It means the tumor is not entirely dead yet (in the beginning they told me this could take up to a year and it’s only been about seven months), but it’s obviously been heavily damaged and expected to continue going down till it reaches zero. That would be nice too.

Put all this in a nutshell … it’s looking pretty good. While the possibility of gaining back any lost function is becoming more and more unlikely, the possibility of “knocking off” the tumor is pretty darn good. To me, that’s a more then fair trade. It’s my belief, we’ve done pretty well for the time being. Doc seemed pretty satisfied too.

I was hoping not to return for a full year before being tested again, but Doc says that we shouldn’t and can’t wait that long yet … so current plan is to return once again in five or six months and do it again.

In the meantime, life remains about the same. Without shrinkage of the tumor, the pain management situation remains the same. Without being a hundred percent sure the tumor is dead, the uneasiness of the future remains about the same. But knowing that there has been no spread or new spots to deal with makes me feel a little more comfortable about the next year or so.

Most of the scheduling I’m going to put in another post so I can keep track of it and be able to find it easily when I need to. There are several other things that have to happen before I can actually begin getting the real proton treatments, and I don’t have all that information yet. But I’m going to post what I do have and make adjustments from there.

First off, in part because of the amount of time that’s gone by, and also for the sake of accuracy, I have to be re-scanned this coming Thursday (September 24) in Boston. I need to arrive at 12 noon for a CT Planning Session.

What’s a CT Planning Session?

Before I can start these very serious treatments, things have to planned out with precision. Basically what they do, is scan you (yummy, more delicious dyes to drink), then they take those scans and put them in what is essentially computer simulator and start to program (yep, write a computer program) using the information from the scans. Cancer cells sometimes spread into the tissues close to the tumor, Dr. Delaney will decide on the exact area to be treated around the cancer. He may also treat a small area (margin) around the tumor to allow for slight movement during the treatment, for example, due to breathing.

In the meantime, a mold or shell of my entire, or part of my body (not sure about that), will be made so that I’ll be lying in precisely the same position every time I receive a treatment. This is very important.

When all is said and done, and the programming is finished, the simulator, will then move in exactly the same way as the proton therapy machine. In a nutshell, it’s a dry run and planning/practice session. Then over a 2 week period, the plan is fine tuned and something called IMRT sessions begin (October 7^th). By the way, that’s still not starting the proton therapy.

Intensity-modulated radiation therapy (IMRT) is an advanced mode of high-precision

radiotherapy. Using the above planning scans, it delivers precise radiation doses to the tumor or specific areas within the tumor … and it does all this in a 3D mode! Now that’s some computing power! There are approximately 14 of these treatments from Oct 7^th until Oct 28^th. It’s after this point, that the real proton therapy begins and I’ll write about as I gain more knowledge about what’s coming up.

A recap:

September 24, 2009 begins the CT Scan and Planning Session

(most probably 1 day trip to Boston)

October 7^th thru 28^th begins the IMRT Treatments

(approximately 3 weeks, Mon thru Fri, in Boston)

October 29^th begins the Proton Therapy treatments

(not sure of the end date … but should be around mid December)

A few more thoughts:

1. I’m so glad not be writing about the surgery I once faced.
2. So happy that BC/BS doesn’t make it’s decisions based on money (yeah right!).
3. I’m anxious about these treatments, and nervous about them at the same time.
4. Now I can start to look for living quarters out in Boston area.
5. I had hoped to have this completed before winter (for driving reasons).
6. I hope I don’t glow at night and keep the cats awake!

I’m ready for my glass of Chaga Tea!