Chondrosarcoma – ah shit, bob's sick

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!

It’s already late, (11:15 pm) and I’m just settling down to write my post for this evening. I poured a big glass of iced Chaga tea and relaxing in my chair.

It rained all day today, and it was cool for summer day. It’s the last weekend of summer and Alberic is getting ready to go back to school! He’ll be in 6th Grade this year! Yikes, time goes by so fast.

Today, I made out a “bunch” of invoices for our server company Scifillian. I’ve been slacking in that department … probably because I don’t seem to have the  ”drive” at the moment. I can’t really complain about business because its actually been pretty good lately. We’ve been adding new clients and websites to our servers every month. I feel lucky about that because in the current economic climate, I thought we’d be going in reverse. That’s a good thing because it helping support us financially and I’m not sure how much work I’ll be able to continue doing outside of the house.

I recieved several emails from a good (great) friend in Sweden over the last few days and they have been so comforting to read. She had a problem similiar to mine several years back, and we have kept in touch ever since. She didn’t have cancer, but she did have a series of very serious brain tumors. I always enjoy hearing from her. I hope someday maybe she’ll publish her own inspiring story about how she personally dealt with it.

I got a lot of email, phones call etc etc. about last nights article ” Road Trip To Boston” … but I think this morning post calmed that down.

I felt “crummy” today, it’s the first day that I had some different kind of back pain, and I’m not sure what it’s from. There could be several reasons for it, for one thing, I used to have this huge old 26 inch monitor and it broke, so I got a new one and disconnected it and brought it out to the barn … but it was heavier then I realized. I also drove 6 hrs. yesterday to Boston … that could’ve done it too. Of course it could be new pains from the cancer, but I don’t think so. At least I hope it isn’t. The pain I’m experiencing from the cancer is mostly in my legs. The nerves and muscles are being stretched by the tumor and that causes some constant pain.

Sher brought some giant carrots in from the garden! I was amazed at large they were. I haven’t paid much attention to the garden this year but Wow! … they were great. She had planted them for Al (he loves raw carrot sticks) and they were the best carrots I’ve ever seen that were grown in Vermont.

As of right now, I’m planning on going to work all week in White River Junction (as long as I’m feeling well enough). I enjoy that. I feel like I’m getting trapped in the house a little too much lately … so it should cure that feeling. I work at a small company called Aris Solutions and I must honestly say that its the nicest place I’ve ever worked at. Most of my life I’ve been in my own business … but this place is just amazing. The people and the bosses are just some of the nicest people I’ve ever met.

I guess today was a kind of quiet day and beleive me thats ok with us. We’ve had our hands full of excitement lately and its wonderful to have a break.

I didn’t have a chance to add the new audio file from Bostons trip yet but I hope to sometime tomorrow. It contains our discussion with Dr. Delaney and it pretty interesting to listen to. I also set up a contact page for this website. Folks have been asking how to contact me so I thought I’d try it … we’ll see, if it gets out of control, I’ll just turn it off.

I also added a few new items to CookingWithoutBob today … now that was fun.

Well, I think thats it for this evening. I’m tired, its rainy and cold, and I’m ready for a long sleep. But if you’re wide awake yet, go check out my friends site at StreamingOldies.com and listen to some tunes!

I got accepted to the program, to be treated with proton therapy. Of course, that opened up a whole new can of worms and lot’s of decisions need to be made. It’s 43 treatments, for 20 mins a day, for 8 ½ weeks (no Saturdays and Sundays).

Will Blue Cross/ Blue Shield pay for it?

Where will I live in Boston while recieving treatments?

If the treatments fail … well, you know the answer to that.

Is this really what I want to do?

The Whole Tale:

Today was another big day, I can’t believe that I’m even still awake writing this. I just poured myself a big glass of Mac’s Chaga Tea and sat down to write at 10pm.

We got up at 4:30 am to prepare for our trip to Boston. The night before Sher had filled the gas tank, we got all our papers together, all the questions we wanted to ask, put the address in our GPS, and printed out directions from Google. We guzzled down a half pot of coffee, fed the dog, and two cats, left them some extra crunchies, and away we flew. We took our GMC Envoy for several reasons, but the main one was that if Sher had to drive at some point, especially on the way back, it would be easier for her. Our new Toyota is standard shift and she is not practiced at it. I wasn’t sure what kinds of hoops this place may have me jumping through, and how I might be feeling when leaving time came around.

We needed to be at Boston’s Francis H. Burr Proton Therapy Center at 10 am. Luckily, I had been at Massachusetts General Hospital many times before and had a darn good idea where the Proton Center was, but it was still a good three hour drive and that’s not counting traffic. To add to the chaos it’s also Friday, and the last Friday of summer so anyone going to the beach, or taking that last summer Friday off was going to add to the roads being packed. I was nervous about making it on time. This was one appointment I didn’t want to be late for, it was hard enough to get and I didn’t want to blow the only chance I had.

We stopped once for more gas, coffee and a few plain donuts (yeah, Dunkin’ Donuts), and arrived with only about 15 mins. to spare. It was just about right where I expected it to be and to be honest, it wasn’t a bad trip at all. Just a bit more of a rush then either of us would’ve liked.

We filled out all the regular hospital forms (I’ve filled out more forms in the last 4 weeks then I have in all the rest of my entire life), and sat down to wait. I couldn’t believe how busy this place was. They were wheeling patients right through the waiting room! … it was crazy … but very professional and efficient. A nurse came out to meet us and bring us to see Dr. Delaney. We waited in a small room while he checked the scans and reports with a “fine tooth comb”, we had brought with us. Then he came to talk with us.

Basically, Dr. Delaney explained that for one thing, there was no turning back once the treatments were started. There was no chance of conventional surgery afterwards if it did not control the tumor. The idea is to stop the growth … so if it fails. The outcome is not pretty. Basically, they start trying any desperate measures they can until the end, and none of those have ever worked. In a nutshell, they drug you till death arrives.

I would be the forth person to have this treatment, for this kind of tumor … but the first for a tumor this size. So, this really is experimental. He made no promises of success, and made it clear that I understood that.

On the up-side of this treatment, life quality remains high. You drive in, you get treated, you go home. It’s almost that simple. The outward side effects are minimal. There is some permanent damage to the bones. The treatments are a mix of regular type x-rays and proton beams. I’m not really that concerned about damage to my bones. I mean either way it goes I don’t have that long to live. I’ve already accepted that reaching a ripe old age isn’t for me. He had some other positive things to say too. He felt I had enough space around the tumor that a minimum of other damages may not occur, that’s a good thing.

So, now the choices are in my hands. For the first time since I was diagnosed with this disease I have a choice to make.

Dartmouth wasn’t wrong about the surgery they were (and still are) offering, they didn’t offer me proton therapy for several reasons. For one, the risk or gamble is high stakes. It’s a life or death decision. I mean death is inevitable anyways, but who the hell is in a hurry? The other reason is, that if the surgery doesn’t pan out the way they think, there is always a chance for more surgery. That’s not true with the proton therapy. The thing that Dartmouth didn’t offer me was much of a “life quality”. I guess that all depends on how you look at life and where you place your personal values. Yeah, I could live in a wheel chair and piss in a bag for the rest of my life, but then you have to consider those around you too. Do you really want to “lay” that maintenance on your mate? Do you know what it is to help care for someone in that condition?

I’ve thought about this stuff, believe I have and I keep coming up with the idea that the rest of my life ought to be shorter and sweeter, instead of longer and harder. Now there’s two ways to look at that thought too. The real questions are: Do I spend the time I have left for myself or do I spend the longest amount of time for my family? That’s what it boils down to, and I can’t for the life of me figure out which is the right thing to do.

Let’s say for arguments sake, that both methods (surgery and proton) work, and that both carry the expected amount of damage and benifits. Now I’m stuck with this thought.

With the conventional surgery method, I may give my family 10 years of time with me, but my life quality is poor, and the maintenance it takes to keep me alive is high. With the proton therapy, I may offer my family only 5 years, but the life quality is much higher and maintenance is minimal. That’s what we’re talking about here. Now how the hell am I supposed to decide that?

Unfortunately, that’s the decision I’m stuck with. I love Sher, and I don’t want her (or anyone for that matter) to spend the rest of her life taking care of me. I don’t want anyone to take care of me. Let’s have some fun while we can and remember things for the good that was. On the other hand, I have an 11 year old to think about too. What the hell do I do about that? That’s what makes the proton therapy hard to accept. Am I robbing time from him because I chose the “shorter, sweeter” route?

Ah, shit. It’s late and I’ll never solve this tonight. I need a good book on decision making.

To be continued:

Cancer For Dummies