Chondrosarcoma – ah shit, bob's sick

Chondrosarcoma Update:
This past Thursday (July 22, 2010), I returned to MHG in Boston for some follow up scans and tests to see if there have been any changes in my cancer condition.
We left Vermont about eight in the morning and took the three hour our drive at a leisurely pace. I left a little extra time for the trip because often there’s road construction on route, especially in the summer. We arrived with about half-hour to spare but by the time we parked and found the Department of Radiology in the Founders Building at MGH that spare time was just about gone.

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.

Read more…

Now that I’m on my way past the first big BC/BS hurdle … I should add “at least for the moment”, I’m looking at the scheduling notes that are coming in from Boston. Yep, Sher is helping me organize them. Yesterdays thoughts about it being about 2 weeks seems to be about right when you add it all up.

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!