Chondrosarcoma – ah shit, bob's sick

It’s Sunday, and it’s an odd day compared to the average  here in Boston. I’m never here on Sundays, but this week due to the Thanksgiving holiday, my schedule has been changed and I had to return on Sunday for a treatment. What’s weird is, that I expected the campus to be busy and maybe even more busy then regular days … but that wasn’t the case.

Everything I accustomed to was closed. Even the valet parking, the coffee and food commissary, as a matter of fact, the entire Yawkey building was basically closed down. I actually searched out a policeman and asked if I could park in the lot and get through the building. Even the rotating doors were locked! He took me through.

The main hospital across the way looked open … but most of the outer buildings all looked closed down. I personally thought Sunday would be a busy day for visitors and things like that … but I guess not … how odd.

I did manage to get into the Proton Center and get a treatment which now leaves only another ten to go.

I also met with Doc today and he explained that the next step was to really hammer the tumor for the last ten sessions … I mean really hammer it. This means increased dosage with Each treatment and probably a little more sleepiness and nausea then I’ve been experiencing with Proton … but you know, that’s a small price to pay.

Working accurately around the nerve bundles has always been an issue, but it’s starting to have an effect on my walking any distance. I can feel the muscle and nerves in my legs painfully complaining each time I get treated. It’s necessary to hit the actual nerves in order to totally destroy the tumor. They’re entangled in a way that you can not attack one without attacking the other. This is the reason why the conventional surgery was so invasive and guaranteed to do permanent damage. Their plan was to simple cut out all the nerves and muscles along with the tumor.

The theory behind proton treatment is that the normal nerve and muscle cells will recover from the proton beam (hopefully in time), but the cancerous tumor cells won’t. Of course, it’ll take months if not years to determine if that actually happened. We just have to wait and see how things pan out.

Other then the pain, in the back of my right leg, I feel pretty good. There is still a constant tiredness and I expect that to increase a bit over the last ten treatments … but then I’m free for awhile.

One of the next things I have to deal with is finding a doctor in Vermont that is able to watch this cancer, read the scans and tests, and make suggestions on and if I need to return. Some of this Doc has said he’ll do … but we’d both like to find a place closer to home that can at least watch on a six month basis as things progress.

Here are some quick notes:
Pertaining to the post “It Came From Outer Space“:
I asked Doc where he thought these rare type cancers come from. He said, “no one knows, no one is even close to knowing, and if someone does tell you where they come from, chances are they’re wrong. At this point in time, science just doesn’t know.” He added, “someday, maybe in our lifetime, they may begin to get an idea as to how these things get started, but nothing know”.

To me, this sounds like even more of a reason for Horward C.’s suggestion of a huge, online, data collecting study about cancer.

I’ve made an adjustment to the amount of treatments to go in the right-hand column n the site. According to the docs records (which I’m sure are more accurate then mine), I have received 31 or the 43 needed treatments, leaving only 12 to go. The column now reflects that.

That’s off 7 treatments from my calculations … I must’ve missed quite a few days of marking them down. Guess I’m not real surprised at that.

That being the case, I expect that the last treatment could be as soon as Dec 8th, and then two days of scanning and testing before being entirely released. At least that’s the way I understand it at the moment. That’s great, earlier then I originally expected and really it can’t come soon enough. Just all the traveling has been a drain on my energy levels I’m sure. The return for check ups schedule has not been entirely set yet … but will involve multiple scans every 6 weeks for a while.

Wednesday was (intentionally) the busiest day I’ve spent in Boston since the beginning of treatments. I’d been wanting to try a day that was full of activity (like a normal day, before cancer), to see how long my energy would last, and how much I could “push” in a twenty-four hour period. Now to be honest, it’s also the only day that I tried to do anything other then show up for treatment,  try to work on the pc a little, eat a little, and sleep. I’ve taken almost no other activity while being here … At least nothing I can think of. Oh yes, let’s not forget the “driving” thing … lot’s of that.

So here’s what I did on Wednesday:
Therapy 11:40 am – 1:30pm
Break 1:30pm – 2:00pm.
Seminar 2:00pm – 3:30pm
Break 3:30pm  – 4:00pm
Seminar(2) 4:00pm – 6:00pm
Dinner at Evoo 6:30pm – 8:00pm.

Add an hours driving, and you have the basic idea. In between all this I was of course walking and traveling around the MGH campus, which is pretty darn big … at least for me it is. Getting around isn’t like it used to be when I was thirty or something.

Now, normally, I handle a day like this with ease, but in this case, I was totally exhausted at the end of my day which was about 8:30pm by the time I got back to Nahant. I barely had the energy to talk with Sher before going to sleep. As a matter of fact, I’m still tired from it today. Was I disappointed? Well, in some sense, yes … but I say that because I’ve always considered myself a high-energy person and it’s frustrating not to be able to do, as much as I could before.

In another sense, I’m not disappointed. I feel like I’m doing pretty damn good considering. I have cancer, I’m traveling back and forth weekly between two homes, I have five huge doses of radiation a week, trying to hang on to financials, household, business, job, and  two months ago I was literally dying … yes, I’m pretty proud that I’m able to do what I’m doing. It’s more amazing actually, when I really sit back and think about it.

I’m kind of stunned that I have only twelve more treatments to go … man that really hits the nail on the head for me. I know I’ll be able to finish that up without any issues … no kidding, I got this part of living with cancer licked. That’s the first step to re-grouping  right?

I never really looked at this in a co-joined way before but, … first I was diagnosed with Chondrosarcoma, now I’m just about to finish up the best treatment program available/possible … what’s next!?

OK … let’s not get carried away here … now we have to learn to live with this, for  as long as we can. But hey … I’ve gained a chance, a fighting chance.

I’ll be adding the recordings made at the seminars for those who think they’d like to learn more about the use of protons as a medical cure for lot’s of things.

It’s Tuesday evening and I’ve just returned from dropping my older son from Tarpon Springs, FL., off at Logan Airport. He’d been here for the last 10 days, but spent some of that time up in Vermont (while I was in Boston getting treated), helping Sheri get some stuff in and on the house repaired. It was wonderful to see him (even though we talk online nearly everyday), but it was also an exhausting experience during treatment. All and all, I have to say that was a great visit and I want to thank him for that. I only wish I’d had more energy to put into it.

Welcome back Dave J. ! Love those pics! I wish Sher and I could’ve joined you … btw … get ready ‘cause air time is coming at us soon!

Monday and Tuesday were both, plain and simple, exhausting days. Technical problems appear to have plagued the proton center so waiting in the sitting room has gone from the usual fifteen minutes to two and three hours. That makes for some serious discomfort for most patients. It’s hard to sit two or three hours when your feeling good … it’s close to impossible when your sick.

We all (patients, nurses, doctors, techs, everyone), made the best of a bad situation as we could be. They tried, really tried … but you know some of the patients just couldn’t handle the waiting. Sitting for hours isn’t any fun when a life saving device is tangled in snafus … but in the end, I think most people got a treatment … I did.

After treatment today I went up to the eight floor and visited what they called the Peace Garden. Basically, it’s a rooftop garden filled with benches, plants and lovely places to sit and maybe think. It was a very peaceful place to be.

It’s difficult to explain, but as I re-entered the main building again I noticed a long hallway leading down and around a corner. Being the typical nosey person (by nature) I am, I wandered down the hallway. As I was trying to get my bearings as to where I was, where I had parked my car, etc etc. I noticed along the top of the wall were hundreds, if not thousands, of hand written messages by past cancer patients of the center.

They were hung in the same way that Buddhist flags are hung and I thought how interesting … of course, there was no way on the planet I was going to walk by and not read them. I had to, it was like a needle in my arm, an addiction, I was totally driven to read the messages as I slowly made my way down the hall. They were made of little squares of brightly colored cloth, maybe twelve inches by twelve inches, and all huge variety of colours.

Each one had a hand written message on them, and a signature, initials, and some were anonymous … many had spiritual messages, messages of hope, peace, acceptance of death … but one, an anonymous one, really caught my eye. It wasn’t the colour or anything like that, it was purely what it said.

Someone had written “Don’t Die With Your Music Still Inside You” on one of the clothes. Let me tell you … it sent a chill down my spine, literally, when I read it. I gave a shiver, and tucked the words away in my mind.

An hour or so later, as I was driving back to Nahant, those words started to ring in my ear, over and over … maybe they were trying to tell me something. They seemed to reflect something so deep inside, so personal and yet something that I wanted to, or was able to, share with others. I thought about this blog and “Don’t Die With Your Story Still Inside You” … what a powerful thing to write. It seemed to confirm the reasons why I continue this blog and the recording of this entire cancer thing … just amazing. What beautiful words.

It’s funny sometimes how a few words can effect you or what your doing. Those few words have given me more incentive to continue the blog and this ongoing story.

What does it mean? “Don’t Die With Your Music Still Inside You” … what does mean to you? For me it simply screams out why I started this blog in the first place. Why I called it possibly, my last piece of art … For those of you that have, or have had, any sort of streak of creativity in their lives it may be easier to understand. I’ve always considered myself a creative person and in several fields, art, music, poetry and yes, although most programmers won’t agree with this … but computer programming is, or can be, extremely creative. Math is art … no doubt about it.

Creativity comes in waves that can last anywhere from a few seconds, to years and years. Sometimes, you can turn it on, like turning a water faucet, turn it on, on demand. Other times it’s a struggle to get it started, to get those creative juices flowing and the thought process moving along.

It’s sort of like this rush or hurry to get all these things out of my head every single day while I still can. I don’t feel like my creativity is coming to an end because my health is faltering … if anything is happening, it’s exploding into a new genre. More powerful then ever … I feel like I could write poems, songs and stories all day long for the rest of life and never, ever run out of creative juices.

You know, I see the world differently now, and so there’s a whole new “world” to draw creativity and inspiration from. Some things that used to matter to me, I really don’t give a damn about any longer and visa versa. Example: I just stepped outside for a moment to grab a breath of the sea air here in Nahant and I can honestly say that it smells different then I’ve ever smelled it before. In some sense, I can say that I’m a whole new me … and I don’t think we all ever get that opportunity to experience that feeling. Don’t get me wrong, I’m not saying having cancer like this is great, but I am saying that creativity is at an all time high, and that is great!

Weird? … no, not really, that’s something sort of positive the cancer has given me … this incredible urge or drive, to finish up my art, as though I should empty it all out of me before this life finishes going sour … and it’s giving me the time to do it.

Anyway, for me it said, continue to write this story, and so … so be it. Someday, somewhere, it’ll touch or help someone through a nasty time in their life. And that’s exactly what this is all about … I don’t want to die, with this story still inside me.

Here’s a pic taken from the 8th floor of the Proton Center where the flags were hung. What a contrast from Vermont. This is where I spend my days.

Thanks for spending your time, reading this.

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.