Chondrosarcoma – ah shit, bob's sick

Yet another fine day of at treatment … we’re on a roll! I continue to feel excellent and am more confident then ever that the rest of treatment will go smoothly. Quite a few folks have sent emails recently and I’d like to thank all, please know that I’ve read them and will reply asap. I also want to say a special thanks to Jack and Arlene M. for their lovely email, and to David P. of Midweek Politics for stopping by and reading the blog, and emailing me today. Those of you that know SPOXTalk radio have heard David’s show many times, and we’ll be starting them it up again sometime just after the holidays.

I’d also like to send “all my best wishes” to my dear friend Ginni G. in NJ, for successfully pulling through her surgery with flying colors and is about to leave rehab on Saturday! DRS Dave … thanks so much for card … and I totally love the business type cards you sent me!

Thank you to Jackie Richardson for her heart felt email, it was appreciated.  Best of luck to William B. in Vermont tomorrow!  Rose M.  in Sweden … I owe you an email  … and to everyone else that’s been in touch this week … thank you all,  so very much for your support.

Howard C.  I just love your comments, YOU are the powerful writer!

Oops …and a very special “hello and I love you” to Alberic and Sher!

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I’m beginning to realize that having one of the rarer cancers is not all it’s cranked up to be, there are advantages and disadvantages to deal with, not that either one is necessarily better, but there are differences in treatment, and availability of information. If I were you, and was going to get cancer, I probably go for one of the more common types. Your chances might be better in the end! … but then again, I’m not really sure about that.

Besides the obvious fact, that the research dollars aren’t there for rare cancers because they don’t effect enough people to merit spending the big bucks on, true awareness isn’t there either. As a result of that, there are probably less, both current and future doctors, studying a lot of these cancers. I also have to assume that the huge drug companies are encouraging and dis-encouraging certain types of studies too.

But there’s other things too …not only doctors, but people awareness too. When I was first diagnosed with chondrosarcoma, no one I knew, not one single person, ever even heard of it, let alone knew someone that had it, or knew anything about. I don’t even think my primary care physician had very much knowledge about. Now he does of course, but back then, he just hadn’t been exposed to anything like this. It’s rare and unusual, what do you expect? He’s an absolutely fabulous doctor otherwise.

I don’t believe any doctor can really keep up with all that’s going on in the medical field. Even so called specialists have trouble keeping up to date, unless you’re a ground breaking doctor of some sort. There’s no way, to know all that’s going on, simply impossible. Which brings me to the point … if you’re lucky enough like I was, to be put in touch with a doctor that specializing in something even close to what you have, you have a chance of getting him interested in your case. That’s sort of what happened to me.

I wrote an email to a doctor that I’d never met or heard of, recommended by a person that just happened to find this blog when I first started it (Bill N.), whom is also still reading it, by the way … and I took a chance that Doctor Delaney would be interested in my case enough to take me as a patient.  Now you might say to yourself “well of course a doctor would take you as a patient, that’s his money!” … but that’s not entirely true. Doc Delaney and the Proton Center aren’t out there looking for business, they have more then they handle at any given time. Machine time is incredibly valuable, it’s literally life saving for many … it was for me. There’s a waiting list for these treatments longer then anyone wants to admit to.

There are only four of these centers in the entire country, and there’s a waiting list for every one of them … and a long list. The reason they took me to the top of that list, isn’t that they liked my name, or eye color … no, no, no … it’s that the cancer I have is rare (one advantage), and there-fore they get a chance to see what their science can do for the tough stuff.

They can “wack” a few hundred cases of prostrate cancer in a week and make a lot more money on that, then on me … but my case holds a special challenge for them. Cases like mine are the reason many became doctors in the first place. These doctors are scientists too, and they don’t often get the chance to study rare things. I rarely get to see the nurses … I get to see the Doc himself, every day after treatment. I’ve seen him stop the nurses from coming to see me, and do it himself! … now that’s unusual.

So in that sense, a rare cancer can be an advantage, if … you can find the right doctors. Then, there’s an advantage to that again, because you end up with the best of best, wanting to work on you, and study you, because they don’t necessarily know when they’ll get a chance like this again.

OK, now lets that think about this for a moment … another one of the down sides or disadvantages to rare things, is that you don’t really fit into any of the pre-thought out categories of care. What I mean is, you become a big challenge for things like technicians, nurses, aides. You don’t require the normal or routine they’re accustomed to working with. You’re an “odd ball”, and that’s not always a good thing, odd balls can get tossed aside too, or rushed through because you take up more time then others.

Your problem is special, so you end up asking special questions, which may require special answers, which in turn require special research … you can be a real “pain in the ass” for a busy hospital. I know that sounds incredible … but it’s true. Hospitals, like any other business, only work efficiently and profitable if they get operating in a smooth way. That’s where the money is … and yes, they have to make money that’s they stay in business and grow.

MGH is in the middle of building an entire new section of it’s campus, a huge addition to help spread the work load, take more patients, make more money, and so on, and so on.

All said and done, I’m not sure where I’d rather be sitting, with a more common cancer or a rare one … but I am sure, that the level of attention, I’m getting from my doctor, is the absolute best, a person could ask for.

Hey, your best bet …. stay healthy and stay out of this place if you can help it.

Proton Center At MGH, Grove St.