Chondrosarcoma – ah shit, bob's sick

Date: Thursday, January 21, 2010

Location: Cox Cancer Center – MGH – Boston MA.

Start Time: 8:30 AM – Finish Time: 3:30 PM

CT Scan: 8:30 AM

PET Scan: 10:30 AM

Dr. Delaney: 2:30 PM

Note:

This will be the first, in a series of visits to Cox Cancer Center, in which comparison scans are to be done. To arrive at 8:30 am, I’ll need to leave about Springfield, VT about 5:am.

No food or drink is allowed which means I have to make this particular drive without the welcome effects of coffee. Somehow, it doesn’t sound like a fun experience … especially if the weather is poor for driving.

Date: Tuesday, December 15, 2009

Location: Bellows Falls Medical Center: Bellows Falls, Vermont.

Start Time: 4:00 PM – Finish Time: 4:45 PM

Dr. Gary Clay: 4:00 PM

Note:

This is a visit to my general family doctor, for a basic discussion on what happened (an update) during proton treatment, the discussion pain relief, caring for the burns, and a few other small details.

Tomorrow is the Boston Proton Planning Session.
I drive to Boston.
I get scanned.
They take their measurements.
Make their plan.
And I return in two weeks to start the process.

It’s so crazy the way this is all done … just totally amazing. With the protons (which are positively charged Hydrogen atoms) they plan on changing or altering the DNA structure of the tumor while inside me. The idea behind it, is that the tumor will not be able to repair it’s own DNA, and therefore, stop reproducing more cancerous cells, and hence, stop growing any larger.

Unfortunately, this will not alter anything that’s already been damaged. By this I mean, the function of my legs, pain, etc. etc., should all remain the same … however, I won’t get any worse either, and that will be more then satisfactory with me . So, the way I am, is the way I’ll be.

In reality, ten years ago, I would have already “bought the ranch” sort of speak. So anytime from this point on … is bonus time. They sent people like me home with a giant jar of morphine and syringes and told them that’s all they could do. So already I feel lucky. Every single day that passes, is another day I’ve won … and honestly, that’s all that matters.

Time expectations? … well, who cares? I ask. I’m already ahead of the game, so every day’s a winner for me.

Health wise? pains? … yep, both are a problem at the moment, but nothing I can’t live through. If they can halt the cancer in it’s tracks … then managing the pains and my basic health should be OK.

Please keep in mind, that this is not a cure-all. There is no cure for this Chondrosarcoma. What this is, is a trade off … for more time, if it all works.

Think positive, keep smiling and laughing (I am) and with a little luck, all this will be worth it in the end.

If I’m back from Boston early enough … I’ll try and make a post.

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 …

Wednesday, September 02, 2009 – 9:45pm

This evening I sent my email off to Doc Delaney asking him to help arrange the proton therapy sessions (see photo below), that hopefully I’ll be taking soon. I’m excited about this and I have a lot of people to thank for helping me along the path I’ve chosen.

I’m more confident then ever that I’ve made the right choice for me and those around me. Whatever the results are … I’ve made the right choice for this part of the journey

As soon as I hear back from the Doc, if the news is “it’s a go”, I’ll start searching for temporary living quarters somewhere close to MGH in Boston. Eight and a half weeks will be a long time from home, but hopefully this will give me even more time later on.

This was one of the harder decisions I’ve had to make along way. I should say we’ve (Sher and I) made along the way. It involved so many complex pieces of information and emotional drainage that it took the 2 of us (in a sense) to make it. In the end of course, it was my decision … no one else can really do that for you, but we are both comfortable with it.

So I raise my glass of mushroom tea and “toast” the decision! It’s done. Final.

Now we wait and see if the insurance company is going to cover the cost of the therapy (pre-approval). If they just cover “that” I’ll be thankful.

The rest of my day today went pretty well. I was feeling much better, at least ½ full of energy and didn’t even take a nap when I got home from work! Fantastic … that’s more like it.

I received a lot of emails today. Some from folks I know, and some from folks that simply bumped into the blog. I thank you all for your kind words and support. Sher and I both, are very appreciative. You know, it hasn’t been easy on her either. She’s been covering many of my responsibilities as well as helping with phone calls, appointments, bringing Al to school … the whole gambit.

Alberic reported his first day back to school went fine … that’s music to my ears! I was concerned how he may handle all this and school starting, but it seems he’s done fine. Kids are amazing sometimes.

Doc and his assistant give me some last minute instructions to relax.

Doc makes some final adjustments to the proton beam.

Doc flips the switch!