Dirty Harry
Remember that movie with Dirty Harry? That’s kind of what I today felt like. I actually thought of that movie as I sat in the Drs office while waiting to tell him that I wanted to hold off for a bit on the big surgery and take a gamble that proton therapy may help me. See, it wasn’t easy blowing off a bunch of Drs and nurses that are struggling to help me, no, not easy at all. I believe their intent is as real and as purposeful as mine is, and that’s to survive in the best way I can. The best life quality I can achieve, and their goal is the same, and they are the professionals, and it ain’t easy to say “hold up Doc, I know you have everything ready for me, but I got this one more opportunity I just gotta check out”. I’m asking him to go back and tell all the others (and there is a real team of them), involved in this very complex surgery, to wait a few weeks till I’m ready and satisfied that not only they’ve made the right choice, but that I have. The difference between the choices isn’t really that great, it’s a simple gamble. You really have to ask yourself, do you feel lucky today punk. Let me explain.
I felt extremely lucky that I got a hold of Dr. Delaney at Mass General in
It's a roll of dice
Boston, and I mean lucky. These dudes are not always easy to get a hold of. If you’ve read earlier posts, you know I was lucky several times already. Another lucky shot was that Bill N. had contacted me and made the suggestion that I try and get a hold of Dr. Delaney and see if he was interested in my case. Well, damn, he was! I was so surprised when his office got back to me via email and phone to offer me an appointment in Boston on Friday. Delaney does proton therapy and that appears to be my only other option at a reasonable life quality that I’d be happy with. But, it comes with it’s own price, and with a huge gamble that I’ll have to face if excepted into the program. You know, everything has strings attached in some way and this gamble has enough strings to make a cat’s ball of yarn look easy to decipher. It really is a roll of the dice.
So let’s look at the gamble. First, understand that this all depends on if I’m excepted into the proton therapy program that Dr. Delaney runs. If not, this gamble is not a reality. Then I have no choice but to have the surgery if I want to survive. The option of simply walking away and doing nothing exists, but how logical is that? If it comes to that, then we’ll have to face that decision too, but for now, let’s say that I am excepted into the program and that I have this choice to make.
First off, like I’ve stated many times, there is the conventional surgery. I now have the full scoop on that. There are a lot of complexities involved, but I’ll simplify it for the sake of clarity and make as many pros and cons statements as I can. Let’s start with the odds of basic survival of the operation itself. They have been steadily raising the odds, that’s a good thing. My odds were 50/50, but after all the other tests, it seems the odds have improved. Now it seems to be about 90% chance survival. According to the other tests that were conducted, I’m in pretty good shape, except for this piece of cancer on my hip and spine. I have a good heart report, good strength in the rest of my body, good spirit and no other apparent problems that could cause a red flag to be raised … so I’m comfy with the idea of 90% chance of survival. That’s not to talk down the complexity and danger of this surgery. Remember, they’re talking about removing the last bones of my spinal column, the sacrum, and a huge piece of my right hip. Basically, that’s cutting me in half for awhile. Of course all this would be re-attachted in another surgery later on. But 90% is pretty darn good odds.
Now, at the bottom of my spine where the cancer lives, are all the major blood vessels that provide blood to the lower parts of your body. There is also a slew of nerves, and all the tube-type things that let you pee, get rid of waste and so forth. I’m going to use plain english here because I don’t remember the medical terminology for all these things.
It seems that the blood vessels are all on the outside of the tumor and basically, it’s all (to use a programmers term) “cut and paste” them out of the way. Not so bad to do, at least according to the vascular surgeon (Dr. Goodney) that will be working on me. Returning the proper blood flow to my legs shouldn’t be a big deal and there’s no gamble in it. He’s confident. That’s good. The complication comes in first, with the nerves. There is no cut and paste of nerves. The nerves run right through the tumor. Whatever nerves are wrapped up in this mess are gone-ners. That’s why I have numb patches on my legs and buttocks. They are already not working correctly and the chances of saving them are nil. The damage that’s already done is permanent and there may be more during the operation. Most of these are nerves that run to my legs, in particular, my right leg. So, that being said, while the blood flow to legs can be saved, the nerves can’t be. What I’ll end up with is, legs that will be alive and attached, but they most probably won’t work, especially the ones that operate my feet. So the chances of my legs and feet working the way they do now are slim. To simplify, that probably means a wheel chair. According to the Doc, most people that this has happened to, come back to the hospital to have them removed because they end up getting in the way … and that makes a lot of sense to me.
Now there are the tubes and other parts that allow you to pee and get rid of waste. They all run through the tumor too. The chances of repairing those is better then the nerves, but not guaranteed. We’ll call that a 50/50. Otherwise you pee in a bag for life. That’s not an exciting prospect, but certainly survive-able.
The last part of this convention surgery is more complex and there is no way of knowing how it’ll work out until they are into it. All the bone (sacrum, hip and a few spine bones) has to be replaced. I believe they use cadaver bones and are growing some other parts. They then try and graft all this together. So you have all the complications that go along with rejection, blood transfusions etc etc. Yeah, there’s a lot of it involved. The rest of the parts, they plan to use wire and metal straps to attach. According to the docs and you can hear this on several of the recordings, this is as complex, and dangerous, as surgery can get.
OK, so far we have a pretty good survival rate, but a pretty poor life quality afterwards. Not that you can’t get accustomed to it, or that they can’t plan future surgeries to try and improve your life quality again … but there are losses and those losses are guaranteed.
Let’s talk about Proton Therapy. In some sense this is rather simple and in another sense, its so complex that I can’t write about with any real detail. I’ll let you Google proton therapy and read up on what it is, how it works etc etc. Here, I’ll simply say that it’s an amazing new therapy that is about 70 times the power of regular radiational therapies like chemo. Normally, those levels of radiation would kill you by themselves, but in a controlled environment and a skilled surgeon, it can do wonders. However, back to strings being attached, there are less strings, but they carry a heavier load.
Cyclotron
The idea (in simplified terms) behind the therapy is to blast the tumor in its place and stop the growth. It’s not going to take it away, it’s not going to give anything back, like nerve function or anything for that matter. It simply stops the cancer from advancing. The tumor stays in you, but becomes non-active. They make a body cast so that you’re in the same position all the time. Blast the protons at you for a bout 20 mins. a day, and you go home! Sounds simply so far right?
Life quality, if you’re lucky, stays about the same. What’s working now, should continue to work (of course accidents can happen) and basically, life goes on. But, there is a gamble here too, several in fact. Let’s take the smaller ones first. If the proton beam hits something it shouldn’t, it’s gone, without any chance of recovery. A blood vessel for instance, would evaporate on the spot. You wouldn’t bleed to death … but it’d be cooked and I mean well done. That goes for anything in the way, and in my case, there’s a lot of stuff to work around. However, they Dr running the proton beam is incredibly accurate and the chances of that happening are pretty slim.
So, we have a pretty good sounding treatment so far … right? You might ask yourself “what the hells the problem Bob? Go for the proton therapy you fool”, but there’s one more gotcha here and it’s a big one. The major downside to proton therapy is, that if it fails, for whatever reason, and the tumor doesn’t become inactive, or they can’t kill enough off, or anything goes wrong in any way. You can NOT go back and say “I’ll have the conventional surgery now”.
That’s what the surgeons told me. Which means, whatever method you buy into, you’re into it for good. There is evidently no way to remove a tumor that’s half cooked. Surgery will no longer be an option.
So, depending on what happens Friday when I go to Boston’s Proton Center and find out if I can be accepted into the program … this is the choice or gamble I’ll be facing.
Conventional surgery with a not so nice outcome, or proton therapy with a higher death risk, but better life quality if it works.
There are several folks out there that have successfully completed proton therapy and are still living and leading an active life. So far the oldest case (if I understand correctly) is about 5 years and still going strong.
So ask yourself punk, do you feel lucky today?
