Chondrosarcoma – ah shit, bob's sick

Monday morning I’ll be prepping to return to Beantown again for yet another round of treatment. I wonder what I’m gonna do with all my spare time when this is all finished? Can you say “catch up”? I just simply can’t believe how many things have slipped through what you might call the “cracks” in my world. I also can’t believe how re-shaped my world has become with all this.

It’s difficult to focus I think, and now of course we have the holidays coming up, and as always that makes life even more complicated. This week I managed to forget about a planned dinner I was supposed to go to … yikes!, that’s bad. To makes things even more complex, the treatment center needs to adjust it’s schedule too. Of course they do, those hard working doctors, technicians, nurses … they all deserve time off. You know that’s a tough job they have and I have to guess that the occasional extra time off on the holidays is of the up-most importance to them.

Any way, at this point in time, I feel well, and am struggling to put my fractured world back together. I have about four more weeks of travel left, and I can’t wait till all the wasted time traveling and moving every four or five days, is over so that I can focus on surviving, work and life in general. These treatments, although far better then the traditional surgery I had faced, is tougher and rougher to get through then I ever initially imagined. You just can’t do it all … and in my case, I seem to be accomplishing much less then I thought I’d be able to.

I know eventually, I’ll get time, work and life back on smooth course, and life will return with some sort of normalcy … but it’s difficult, to say the least, on a daily basis, dealing with all the things that keep life running. So in a nutshell, I feel OK these days, but the rest of life is a messy thing that’s just going to have a to wait a bit more. Me?, I can’t wait to get back to work and living in one place for more then a week!

And just think, all of this and there’s a bunch of people helping us through this too! I can’t image doing this without help … I simply just can’t see it happening. Different people have helped, with keeping different parts of my life, running as smoothly as possible.

Friends at work have helped, people at the house have helped, friends that live far from me have helped keep our business afloat by working remotely … it’s just crazy all the help I’ve been receiving. Even living in Nahant has been full of helpful people. It’s amazing to see all the connections and friends in life suddenly pull together to lend a hand to someone in need. What a lucky man I am … I mean that.

This coming week, and over Thanksgiving week, my schedule well be changing constantly. Monday, I’m heading back to Boston, Tuesday I’m bring someone back to the airport so that they can fly out, Wednesday I have 2 seminars to attend, Thursday a dinner to attend, and then returning to Vermont again on Friday. Thanksgiving week is even crazier!

I guess I shouldn’t complain though, I could be sitting with nothing to do and I don’t think I’d want to be there either. At least the drive to accomplish things and be social is still in gear, and I have lot’s of friends to thank for that.

One of the real things that makes this more time consuming then I expected is that every four days, I have to pack up all my pcs, clothes, personals … you know, and move it to either Boston or Vermont, and then do the drive. It kills a lot of time that otherwise wouldn’t been spent working or accomplishing something. Figure it out. The hospital absorbs about 4 hrs a day on average, that includes travel time from Nahant to MGH. So that’s about 20 hrs. per week. The you have the drive back and forth to either the MGH or Vermont, there’s another eight hours on average (it’s a three hour drive, but I have to stop each trip and stretch my legs). I can add a few more hours for packing twice every week. So basically, I’m blowing close to forty hours a week … just doing the treatments and travel, now add in having the time to eat, wash and all that stuff, then add trying to do some work, keep up with a twelve years, the blog, the pets, and that’s not considering one of the most important things in my life … Sher!

So when I say things are good, I mean they are, treatments are going as well as can be expected, MGH has been watching me like a hawk … so I feel I’m getting the absolute best of care, but it is exhausting to deal with.

That’s it for today, I’ll be posting short updates this coming week from Boston.

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!

Today was an interesting day at the Hospital, usually, I receive “a treatment”, then sometimes a quick visit with a nurse (where she does a weight check, blood pressure, all the standard stuff plus a few questions daily), and then a bit of time with Doc for general discussion, but today was different.

I was visited by three nurses, a different doctor, and then my regular nurse, and Doc Delaney. Now for those of you who don’t know, Massachusetts General is also a teaching hospital, and what a great place to have one. Directly in their neighborhood is Harvard, M.I.T., Tufts, Cambridge, Northeastern and a slew of other great schools that allow the hospital to have a giant pool of bright young people to draw from. It couldn’t have been planned better. I mean, this is one of the primary reasons they are so successful.

It was interesting, because they basically all asked very similar questions in their developing professional way, but also in an individualistic, human way. I could clearly see which ones had more human emotion attached to their voices and mannerism’s, and those that didn’t. Hmmm … now what the hell does that mean?

Prior to this cancer story, I’d never spent much time around healthcare professionals in a professional setting that is. Yes, of course I occasionally went to see a doctor, and all the standard stuff, but I never spent a lot of time with them, never seeing them everyday, day after day, never getting to know, or see the human or personal side of them, like I am being allowed to now.

It’s a strange thing to say, but I’ve never before felt or experienced the human and/or compassionate side of a doctor or nurse, or technician. Maybe you can say, “well why would you have”, which is true in a sense. I mean you may get a degree of compassionism from your family doctor that you’ve known for a long time, but this is somehow different.

Maybe it’s the hospital atmosphere, or maybe that it’s a cancer ward and many are in deeper trouble then I am, and maybe I’m not capturing the right words as to what it is. And it may simply be that I have never experienced it because I’d never been in a situation that required enough time to be spent with them before. Maybe it’s the reason they became healthcare individuals … to help people.

But I do believe, that it is, that human side of the individual healthcare professional, that makes one better, then another. If, you can call it that.

OK, so where’s this going? Today, within a three hour period, I saw and spoke with a total of six doctors and nurses (not counting the five on the technical equipment team for treatment). That’s a lot! … when’s the last time you’ve had that happen? Ever? For some reason, I was sort of “in tune” with watching the way, they were seeing me as a patient for the first time. I’ve never had the opportunity to do this before to rapidly experience that many at once..

I sort of stepped outside of my body, as they spoke with me, so that I could see them, speaking with me from another point of view. Maybe I was interviewing them at the same time.

Now I don’t know if these total newbies on the job, or semi-experienced, or what state of their career they were in. However, and why ever, I watching this side of them, as they spoke to me, I can’t really say or understand … I just was.

I observed at the same time, several different things. For one, I recognized that two of the nurses seemed more genuine in their care towards me, then the other. Define genuine? Caring, wanting to know, asking questions, prodding answers … mining for information from the patient, all during the time that they are weighing, taking blood pressure, etc etc.

The other, did the same things, but without the heavy questioning, without the enthusiasm? But, she did get all the same data … sort of. I wonder. Was this one more professional in a sense? … maybe that could be argued.

The most intense at this, was the new doctor! Now she asked a lot of questions and a quick exam, as though I was one of her regular patients. In five minutes, she knew quite a bit about me. Impressive, and with that same human touch. She was good, ready for primetime without a doubt.

Now, I don’t really know, and maybe it’s a matter of opinion, but somehow, the doctors and nurses that had the stronger human-compassionate side, I perceived as to having done a better job. But I’m not really confident, that’s true … my perceptions are true … but did they really do a better job?

Maybe you just had to be there to feel it. As a patient, it was an interesting experience and one I hope I get to repeat again before I leave MGH.

What an odd day, what an odd thing to do … watch them, watching me.

Let’s start with a simple re-cap here, the cold that has gripped for the last few days is definitely on it’s way out. I’m not sure what caused it to be so intense, but I’m glad it’s almost gone. Could be that the radiation treatments have weakened my system in general,  the cancer itself, I assume weakens it further yet, and of course I’ve been in and out of hospitals and centers amongst hundreds of sick people, on a daily basis … so I’m not really surprised that I caught something. Anyway, it’s mostly over and I’m feeling almost back to whatever normal will be for me.

I lost another five – six pounds, due to the cold and living on ginger-ale and water, but I’m confident that I’ll be putting that back on within a week or so. The doc recognized this fact today, and seemed ok, with that as an answer, as to why the rapid loss of poundage.

This past week, we also had a catastrophic failure of one of our servers on Scifillian (which is the reason this blog was down for a day or two), but all seems to be functioning now. I won’t go into deep detail about it …. But I will say, that you really have to watch the scripts that you allow others to run in their sites. For you programmers out there, you understand what I’m talking about. It doesn’t have to be done intentionally, to create a disaster that brought down dozens of business sites for days. If you’ve sent me an email in the last few days and it bounced, this is the reason why, and I ask that you please resend it. Simply said, you can thank Josh F. for the very fact that you’re even reading this blog tonight. If it weren’t for him lending a quick hand in setting a new server up, I probably would’ve lost a lot of clients, and had a bunch of really pissed off customers. If there’s a computer god award out there, I give it him for this one.

You know, I been thinking about this from time to time, but I’ve never asked any of the doctors at MGH or any place I’ve been for that matter. Nor have I read an acceptable answer anywhere. It keeps crossing my mind as though for some reason, I should have, or need an answer, … or that there is an answer, out there somewhere, and I just haven’t met the right doctor or scientist that can give me a direct, accurate reply. My question is simply, but the answer could be so incredibly complex that it makes proton therapy look like child’s play.

So ahhh, where do these weird, almost unheard of, cancers come from? What are they? … There are a lot of reasons why, someone, me included, would want to know. For instance, I wondered if it came down the line in my family, my mother’s side?, father’s side? I never heard of it, but it wasn’t long ago that they didn’t know 90% of the time what you died from anyway. Maybe it comes from two or even three generations back, maybe it developing right now and starting with me, and it’s in my genetic code, and I’m the idiot passing it on further down the line. Maybe it starts and stops right here with me, you just don’t know.

Here’s a big thought … maybe it’s our life-style … you know, the way we live, the stress of raising families in today’s world. It certainly could be, look at what we have to do to survive these days … you sell your soul to work, so that you can simply feed your kids … it wasn’t always like that.

Here’s another big thought … maybe it’s in our environment! Look at all the crap we live with and use, just go count the plastic containers in your house … and all those cleaning agents, and all the air pollution, water pollution and so on, and so on. Where does it come from?

What made the cells in my body go haywire and start duplicating themselves in a different way … that’s what cancer is. Cells begin to reproduce themselves dramatically different then they were meant too. All of a sudden, something sets them off  kilter, and they begin developing their own blood vessel network that looks like a crazy woman’s quilt and they begin expanding as though they are going to take over your entire body … and they will if you let them.

So what is it? … is it the radiation dissipation  from the test nukes they dropped in the 1950′s when I was just born?,  maybe it was the insecticides they sprayed the streets with when we were kids to keep the mosquitoes at bay, or the stuff they spray on lawns to keep your grass green and fed.

There is so much stuff that is allowed to be used on people, and there hasn’t been nearly enough time or testing that’s gone on to really say “this is safe”, because what they’re really telling us, is that “this is for sale”, not necessarily safe. Granted, I probably buy the crap and use it like everyone else … but have we been sold a “bill of goods” that totally one sided for the safety of business rather then people? Stick that in your pipe and smoke it.

It was only fifty years ago that the government itself was passing out free cigarettes to it’s soldiers in the military … that’s right, encouraging smoking! My father was one of them, he came back from World War 2 with a smoking habit, thanks to Uncle Sam, and therefore all his children smoked … it was OK back then to let your kids smoke. We wouldn’t dream of doing that today. We’re only talking one generation back … it’s incredibly close in time. Of course the tobacco itself wasn’t additive enough, so they also allowed the companies to fill them up with more chemistry then Harry Potter’s workshop and here we are today … everybody’s dying, health care expenses are skyrocketing, and our politicians are sitting back and wondering why? Come on, gimme a break, we’re not that stupid, at least I hope we’re not. They are working on dumbing down America though.

I remember as a kid in the streets of New York, there used to be pretty girls passing out free smokes (cigarettes) in the streets and in the bigger, fancier stores! Just right there, giving them to anyone who wanted them. Didn’t really matter if you were a kid or not. That’s how it was done in my lifetime … and that was probably only 40 years ago.

You can say they aren’t doing any longer, but you know what? … they still are, they’re just doing it in other countries! I shouldn’t go on and on about this stuff because it just gets you pissed off that it could be the reason people are still suffering so much today, and that’s not what this is all about … or is it?

Whatever it is, what I’d really like to know is, have I passed this on to my children, or is it something that’s a one time deal for me only? Do we need to watch our future generations for genetic mutations that may leave our family lines susceptible to such cancers. Are all family lines in such trouble? Everyday I see a lot of people (men, woman, and children) from around the globe (and I mean that, the Proton Center in Boston is servicing people from around the world), with all kinds of cancer and it makes me wonder if it’s always been like this and we simply weren’t aware, or if there is a huge increase in the rarer cancers like this.

I could understand if this cancer came from smoking, or a work/living environment like asbestos … but I don’t think that’s the case here, it’s simply an oddity at this time as far as I know … but I want ask Doc Delaney his opinion on that. He deals and works with this stuff everyday, and sees people with all these odd cancers, both young and old … what’s the story doc?

That’s it for tonight, I promised my dear old friend Lydia R. that I would write a restaurant review, the Boston section, of the world famous Zagat Guide, about one of her friends restaurants that I recently dined at.  Besides, I have a lot of work to catch up on.

The last two days have been crazy! So many things happening on the home front. At the least I can say that my cold is finally clearing, and that I’m begining to feel much better.

The weather here in Nahant has been absolutely beautiful too! One of the nicest Novembers I’ve spent in a long time.

Treatment has been going very well (which I’ll elborate more on in this evening’s post), and besides the cold thing, I’m really starting to feel pretty well.