Chondrosarcoma – ah shit, bob's sick

I’ve written this before, but every now and then I find it not only important, but necessary to repeat. Let me say “if you’ve sent me a personal email, especially within the last month or so, and I have not replied back to you … please resend it”. Chances are there’s a copy in your “sent bucket” of your email program.

While I don’t have tons of extra time … I do, very much enjoy reading and replying to all my email …. it’s important to me, personally. It has become an important part of my day. I say this because just today as I went to empty my junk mail folder, I saw an email that I had missed from (Judy G) …. but it was too late, it was gone before I had a chance to save and read it. So please … resend any recent correspondence if I haven’t already personally replied to you.

Since I’ve started this site, I have communicated by both email and telly, with some of the most interesting people I’ve ever met …. and I love that! It’s nice to hear from people, it’s supportive, informative, and rewarding for all.

Email is this amazing two-way street of conversation …. so many have helped me get through tough periods of this cancer, and I know I have helped others in return to understand what it’s like to be in this situation. Many have written powerful messages to me and we keep the correspondence going. I’ve heard many times that some “never knew” what thier parents or mate was going through, or the emotional experiences they went through.

So please, please, please … if I don’t personally reply in a few days … resend that email.

Thank you … I love you all.

Recently, I’ve been beginning to notice what I believe to be, little permanent changes that have been taking place in my system, since treatments ended in mid-December 2009. Believe it or not, I think it’s taken this long for some these things to begin to appear, or come out.

If you remember, a ways back I was told that the proton treatments could, and probably would continue to work on the tumor for as much as nine months after treatment stopped. I am now beginning to understand what they meant by this.

The claim was that the treatment wouldn’t instantly kill the tumor, but that it would alter the tumor’s DNA sequence so that it could not continue to replicate and there-fore, not continue to grow either. Which basically means that the tumor is alive and well for a period of time (hence the nine month span) after treatment.

I think this is true, because I can feel it changing over the last eight weeks.

I find it hard to believe that it was only been eight weeks ago, that I was still undergoing intense treatment at the proton center. Driving back and forth to Boston, and feeling continuously ill for months. It seems like it took place in another life-time even though I remember it (almost word for word or action for action) like it were yesterday.

But here I am, just beginning to understand and feel the effects of what was done during that three month period I spent in treatment. I might even venture to say that “the effects of the consequences, of the decision to go with Proton therapy instead of conventional surgery, are just beginning to show”.

Clearly I’m not saying that I’m sorry for my decision in anyway, I feel that, even the time that I’ve already had, is a huge bonus in comparison to the alternative … but you’d be a fool to think that I walked away from treatment without having some effects that were permanent.

Since treatment ended, I’ve continued to lose weight slowly. Very slowly I might add, but a continuous loss non-the-less. As a matter of fact, I can actually feel the tumor itself, more now, then I could a few months ago. I have to assume because of the weight loss, there is less ‘padding’ around it, and there-fore it’s less protected then it used to be.

That’s right, I can actually feel the lump under my skin more now then before. It’s lightly sensitive too. If I poke it or bump into something … it’s an ouch! … to say the least.

My ability to walk has been changing too. One general statement I could say is that at most times it is now less painful to walk. However, the duration of time that that statement is true, seems to be changing and not for the better.
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Well a few days have gone by and I’m starting to feel a bit better. Unfortunately, sleep habits have been poor though … geez, I just can’t seem to get it all going at once. Any how, I’m personally glad we didn’t get any of the snow these last few times around. Although I feel bad for the folks and businesses that make their living off the snow, I myself don’t miss it … especially this year. I’ve had my hands full dealing with the cold weather.

After work today I took a drive over to Lebanon, New Hampshire to visit Keene Medical Supply in search of a better wheelchair. I’m hoping to get this settled before summer hits and I want to get around more. This winter I haven’t really been outside that much … and travel has been difficult.

This store was suggested by our insurance company, as a well supplied medical shop. As I pulled up to the building I thought to myself, “ gee it’s pretty big, I guess they’ll have a selection of chairs to choose from. When I walked in I was totally stunned at the lack of supplies of anything they had … I mean, I bet they were low on band-aids!

I should’ve walked out right then, but I continued looking around until nice young lady came out from the back and asked if she could help me. I explained what I was looking for and she went to get (what I assumed was) the boss.

Again I explained that I was looking for a well made wheelchair that was lightweight, comfortable and good for everyday use. The only other criteria I had was that it fit into either the trunk of my car or the backseat. I travel alone most of the time so it has to be something I can handle by myself. In and out of the car, folding it up, etc etc.

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New on the audio page is one of the seminars I attended, The History of Proton Therapy by Ethan Cascio, in the Gointein Conference Room at the Francis Burr Proton Center at the Massachusetts General Hospital. Wow … what a title! Unlike all the other audio recordings on this site, I did just a bit of audio engineering on this one because the background noise was high … basically, I simply cleaned it up a bit. For anyone considering proton therapy for any reason this is an excellent seminar that covers the basics and a little bit more about proton. Runs about 75 minutes. Wear your physics hat if you listen.

This past Friday, I thought I’d felt the technicians doing extra registration marks and set-up on me, but I didn’t think much of it, as is often the case with proton therapy, the angles and directions they fire you at, often change. However, when I got back to Vermont later that evening and removed my shirt, Sher said “what the heck is THAT on you?” … I replied “what?” … and started to look at my side in the mirror. Sure enough, there was writing on my side but I couldn’t read it in the mirrors reverse view. “what the hell does that say?” … here are the pictures. It’s a note to my son Alberic from the technicians J

I’ve been exchanging emails with David Spahr who recently published Edible and Medicinal Mushrooms of New England and Eastern Canada. Here’s a link: http://www.randomhouse.com/catalog/display.pperl?isbn=9781556437953

David is an interesting man with his own cancer story, check out his site too:

http://www.mushroom-collecting.com

This week was the ARIS Annual Meeting, the bad news is unfortunately due to treatment schedule I missed it … the good news is, I should be around next year to attend. Thanks to ARIS that is now a realistic for-see-able goal.

There are two new projects I’d like to add to my plate if my energy returns to anything remotely close, to what it once was. I have both these things pounding my mind each and every day and am going to have to do something about them. They are sort of tied together in some sense, but need to have separate indentities too.

One is, I’d like to start a foundation for cancer’s that are rare … and I mean rare. Even at MGH’s Resource Room in the Cancer Center, I saw abosolutely nothing on Chondrosarcoma. No books, no films, no data stats, nada. Even the staff that worked there were stunned at what they were missing. The thing is, is that your spirit is lowered when you can’t find a story, or a letter, or anything about what you have. Not to be foolish … but it was very depressing to see a huge resource like this with nothing about your cancer. So I’m thinking the goal of the foundation would be to handle or create data, on “missing cancers” that aren’t so popular (for a lack of better words), so that no one is left out. No one should be going through this without some information available. Even if it’s doctors notes and reports.

When I started to research my own cancer that‘s all I had to work with! I had a few reports that Doc D. and some colleauges had published in remote medical journals, and a few other papers on the internet … that’s it. Even my primary (family) doctor had to research what the heck it was before contacting me to say what it was I had. It shouldn’t be like that. No one has collected this data, and it doesn’t look like any is about to. The reason I want it to handle more then just my cancer is because there just aren’t enough people with it … but, put all those rare cancers together, and you have enough to create a library of information on rare cancers. It may not ever be a huge foundation … but at least there would be something to gather information from.

I don’t believe this is a hard thing to do … simply raising some money and awareness would be a good start.

The other project I’d like to see started is a general, online, data collecting bank(for lack of another word) for all cancers. This would be a larger project. In it’ssimplest form, it would collect data from volunterary cancer patients around the globe and search for similarities within catagories. In basic, Howard’s idea. Cancerpedia, built be people themselves, with information and questions provided by health professionals could be a huge value. At this point in time, no one seems to be collecting and mining data in any organized way. Beating cancer is going to take more effort then just doctors can give. It’s going to take all those effected and involved to get together and share information.

This of course would be a huge project …. but it could happen. With todays internet community, I believe you could collect enough data, stories, research, and information, globally, to make a difference in the way some cancers, are not only being treated and viewed, but finding where commonalities (that are now being missed, through an entire array of possiblities) come together, through areas like the environment and other global issues (war zones, climate, etc etc).

Don’t believe for a moment, that cancers are all genetic screw ups in individuals bodies, or that it’s all inheritence based, or even that it’s all environmental. Let’s start collecting that data and information (even if it takes twenty years), and see what we get.

OK …. This is probably a huge amount of dollars … but it could happen.

Tomorrow morning, I head back toward Boston and Nahant for another round of treatment, only about two more weeks to go!

Back in Vermont and generally feeling pretty good. I signed up for a seminar at MGH on the History Of Proton Therapy, and then got invited to a doctors level seminar on the Future Of Proton Therapy. I’m very excited about attending these seminars and hope to gather some new information about the treatments I’m receiving and proton in general. Both are being held this coming week, and I’m sure I’ll be making posts about them.

I am now beginning to see a few familiar faces around the center … which is nice. I’ve spoken with a few of them and am hoping to build relationships that go beyond the Proton Center, and continue on, after treatments are completed.

In another post made earlier this week entitled “It Came From Outer Space”, my friend Howard C. came up with an idea that I found extremely interesting. I was writing about where these rare cancers come from, and the hundreds or even thousands, of possibilities and Howard suggested building a large expandable, online questionnaire about this.

The general idea could be to have people voluntarily sign up, answer the questions, and then a backend computer program would mine the data looking for similarities in cases. But, there would have to more to it then just that. It would have to be able to add questions at anytime, and the system would email those that already took the survey and ask them to return and fill out the new questions … and build an ongoing base of information, to see if there are commonalties in some of the information. Yes of course, this could become a complex program quickly.

Now, there would have to be a lot more to this then I’m speaking about here … but that’s the general idea. I’m truly considering doing this. Howard’s correct when he says that no one ever seems to ask these questions in any depth, and I have found that to be true in my experience. With all the hospitals and doctors I’ve dealt with, not one has ever asked me to fill out any sort of “where did this possibly come from” form or survey. Isn’t anyone, or any agency looking at this? I know that most states asks that cancer cases to be registered, although it’s not required, but they use that for simple cluster searches, and very basic statistics … not for research purposes. They only ask about six questions … I’m talking about possibly hundreds and maybe even thousands of questions over a long period of time.

You join this ongoing survey (become a member like in a forum), and continue adding your health information over your lifetime, and adding/asking new questions. You add a little information once a month, or every six months … whatever.

Most people that have a cancer, I would think, have a lot of questions that never got answered, or asked, for that matter, during their initial experience. When your diagnosed with cancer, it tends to take over your life … and you do want ask questions. I have, and if their experience is anything like mine has been, and I’m not saying my experience is poor or bad by any means, there are going to be even more unanswered questions when I’m finished.

Can you imagine?, something interesting from global community could be discovered!

Wow … it could even create some good new jobs!