Chondrosarcoma – ah shit, bob's sick

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!

Here’s what’s on my mind:
It’s 5:45 am and I’m having my first cup of coffee. I love this time of the morning. The house is quiet, the chances of the phone ringing are nil, and the only thing running around the house are two grey cats that are playing. I know it’s early, but there’s a lot to do today. Besides, these past 12 days (this blog is 12 days old) have been so busy with Dr’s. appointments that I haven’t really had a moment to reflect on all that has and is happening.

Today at 10:20 am, I’m meeting with Dr. Sohail Mirza the Head surgeon. I assume this is to go over the surgical procedures and to attain a clear understanding of what’s going to happen. All week I’ve had these meeting with the group of surgeons that are going to work on me.

Individually, they have all explained (in detail) their part of the surgery and the expected outcome of their individual work. Basically … they’re telling what and what not will be functioning on me when I get finished with this series of surgeries …. and me tell you, that list gets longer and longer with each surgeon I speak with. Quality of life, seems to be dropping with each appointment I keep.

Until this point in time, I feel like I’ve had no  other realistic choice (what I consider realistic is something that can actually cure or at least stop this cancer). So, I have to go along with whatever they say … or die. The initial “call” was that I had about 8 weeks to live … and about 6 of those are gone now!

A few days ago, on August 23,  I wrote to Dr. Thomas Delaney in Boston, MA.  A simple email, that asked if he were willing to take a look at my case and determine if I were a candidate for proton therapy, which I discovered was a possible because of this blog.

Sher had also made several calls to Dr. Delaneys office but we hadn’t heard back … so I figured, OK … I’ll go with the surgery. We also recieved (yesterday) an itinerary from the hospital with the last few appointments and a date for being admitted, and a surgery date. I prepared mentally for the surgery

But after dinner last evening, I really gave up with any hopes of Boston contacting me. I said to myself,  ”well, I tried … I guess I just wasn’t a candidate for the program or it just wasn’t in the cards for me”. What little appetite I had had, was gone.

What the heck I thought, tomorrow I meet again for final consultations and away I go. I don’t really feel like any of this has been in my control, all decisions seem to have been made for me, and no options have been offered … I did what I could … right?

Well, I got up from the table and was about to call my son in FL, when I glanced over at my email … and there it was! Return email from Dr. Delaney in Boston asking if I could quickly get a copy of all scans and records of my case and bring it down to his office in Boston!  Wow … another possible option.

We had a lot of visitors last night. One, was my friend Harry M., he put a new sound card in Sher’s pc so that she could Skype with others around the country. I tried to put it in the other day at 5 am but became frustrated and hadn’t had time to try it again … thanks Harry, Sher needed that. Also, 3 folks for our Peace and Justice group stopped by for a quick “how ya doin” conversation, and then a visit from Peter D. …. which I never expected but am so happy that he came. I’ll tell you more about Peter as the days go on … he is one hell of a 75 year old.

OK … so where are we today:

On my way to Dartmouth for 2 reasons: 1 is to keep my appointment with Dr. Sohail Mirza and get the final info before surgery and 2. to put up a copy of all my scans and bring them to Boston. So that I may prevent getting this surgery. Yep, you read that correctly … they are 2 conflicting things.

If there is anyway on the planet that I can avoid this surgery … I’m going to … and Dr. Tom Delany in Boston is willing to look at me and determine if there is another option (proton theray), and if there is … that is where I’m going.

Yes, I know … I have to cancel this giant surgical thing they’ve set up at Dartmouth (at least for a week). I know, I’m going to have one pissed off hospital and a bunch of pissed off Drs … but what the hell, it’s my life, my choice, my chances and risks …. and I’m going for it.

More to blog tonight …. I gotta get ready to go.

8/28/2009
Radiology
Dartmouth Medical Center

6:45 am Angio/Vir Workup
7:30 am Angio/Vir 4
9:30 am Angio/Vir Recovery

Wednesday 8/26/2009
Spine Center

2# Consultation with Dr. Sohail Mirza
10:20 am – 12:00 – noon