Chondrosarcoma – ah shit, bob's sick

It looks like Sher and my patient navigator have come up with possible living quarters (about 99% sure) for me in Boston. The Hope Lodge is where I may be staying. The Hope Lodge is funded in part by AstraZeneca , the American Cancer Society, and private donations. All the necessary paper work has been filled out and submitted and we await the answer. We tried to do this through Blue Cross but they began to hassle us again with another weird set of impossible rules to follow. I plan to check the Hope Lodge out on Thursday when I go for the Proton Planning Session.

Wednesday 8am, is the time set for the oil change … this way I’m all set for travel to and from Boston.

I want to thank Howard and Sandy C. for their generous offers of help today … at the moment, we’re OK.

I’m decided to slowly design a real “Proton Power” T-shirt, and will start that while in Boston.

Treatments may end on the week of Dec. 11th … I’ll be finding out shortly.

So, all and all, it appears things are beginning to calm down with getting organized enough to make these treatments really happen. That’s a good thing because I feel they’ll be “buying” me some time, and that’s great for Sher and Alberic … and me!

Soon it’ll be time to start the treatment process … can you imagine!? … all this just to prepare.

I have to schedule my first oil change and scheduled miles service for my new Toyota this week. Sometime before Thursday, because I’d like to drive it out to Boston for my CT Planning Session. That will provide with an assurance that I can actually do, what I plan to do on a weekly basis for the next 3 months. Driving long distances can be a challenge for me at times and I rather know now if I can or can’t do this by myself.

I tested my new laptop for remote access capabilities so that I can keep my websites updated, and continue to work, while in Boston. All tests turned out fine, and now it’s a matter of having living quarters with high-speed access.

It’s now time to begin securing Boston living quarters. Monday thru Friday from Oct 7 to Dec 20. Hopefully this won’t be a huge hassle. The plan is to find out what BC/BS will cover and then add the rest myself. With a little luck, it won’t be too expensive to survive in Boston and still have some comforts of home. Of course the first challenge will be finding out if BC/BS has an actual per diem allowance.

A special thanks to all who have been emailing and writing. Howard C., William B., Joshua F., Rose M., Bill N., Sara S,. Louise P., Colleen O,. Jim A,. Ray L,. Lysz S,. David J,. Sandy D,. and all the others that have been sending well wishes. I really appreciate it and it helps keep my spirits up. I love hearing from you all!

I also want to thank Howard C. for suggesting that I setup a recovery website and name it BackFromHellBobsWell.com … excellent humor! William B. made some suggestions for the use of my cane in this statement – “The nice thing about canes is that they are also excellent for beating your servants, children, and pets whenever they show insufficient respect or obedience”. Thank you guys! … there are times I re-read these emails and laugh my ass off. Both Sher and I enjoy this stuff. There really is some comedy in cancer.

Proton Power – We sold a ton of the T-Shirts that weren’t for sale!

I set up a new links category entitled “Friends of Scifillian”. They are some of the companys that are on our servers. I have more to add and will do so this coming week.

More to come …

That’s right, you”ve read correctly!

You can now order your very own Proton Power T-Shirt from AhShitBobsSick.com!

Order 2 NOW and save!

To order, leave a comment on this post!

copyright ahshitbobssick.com 2009

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!

Thursday, September 17, 2009:

After another frustrating morning on the phone, Sher got news that BC/BS will be covering the cost of these special treatments and have approved them to start. They have also assigned me a Nurse Case Manager (a nurse that works for BC/BS). Both of these things are very positive steps towards the beginning of “real” treatment for this cancer.

Of course, this only happened after threatening them with calls to Senator Patrick Leahy, Congressman Bernie Sanders, and a whole gambit of political folks from Vermont, including employer intervention. BC/BS finally gave in … and all that I can thank Sher for.

So, this is now the official beginning of the treatment process. The Proton Therapy Center is now setting up a schedule of appointments to re-scan me, and then they need to make a precise plan of attack against the cancerous tumor, and then the treatments will start. I estimate that (from the knowledge I have and understand) to be about 2 weeks from now, that we can actually start treatment in Boston. Yippee!

Now I have to buckle down to find and secure living quarters with high speed internet access, close to the hospital, and near food sources. I don’t expect this to be very difficult as I have had many generous offers, from many folks. I appreciate all those offers and will be deciding as soon as I get my schedule(s) from Doc Delany and the Proton Team! I must admit, I’m feeling better about this whole thing and the chance of at least having the treatments they may make all the difference in the world.

After the treatments are completed, I’ll be looking into some sort of pain management so that I hopefully don’t have to stay on pain meds forever. There are a lot of options out there including acupuncture which may be the best bet … we’ll see when the treatments are over and make a judgement from that point.

So in a nutshell … we’re off and running! Treatment schedule will be posted when I have it. I suspect we could even hear about that tomorrow.

A couple quick notes:

Today, I also received more vicoden and morphine from my regular doc, to make through the next few weeks.

Harry M. missed his birthday cake at work today!

I’ve set up 2 new categories for articles on this blog entitled “Posts From Boston” and “Proton Treatments”, this way I can keep track of all that happening. Most of the time I’ll be in Boston I’ll be alone, so this blog will become even more important then it’s been.

I feel lucky that this is the beginning of treatments!