Chondrosarcoma – ah shit, bob's sick

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