Chondrosarcoma – ah shit, bob's sick

Chondrosarcoma Update:
This past Thursday (July 22, 2010), I returned to MHG in Boston for some follow up scans and tests to see if there have been any changes in my cancer condition.
We left Vermont about eight in the morning and took the three hour our drive at a leisurely pace. I left a little extra time for the trip because often there’s road construction on route, especially in the summer. We arrived with about half-hour to spare but by the time we parked and found the Department of Radiology in the Founders Building at MGH that spare time was just about gone.

The first test was a complex MRI (one of my personal favorites) that involved setting up an IV with mix of several solutions for reading levels of activity in the tumor region of my spine. It’s a long test, about thirty-five to forty minutes and they do several passes. First pass is to get an accurate measurement of the tumor itself … like actually measuring with ruler, height, width, depth.

Then they inject you with a contrast so that blood movement (or non-movement) can be measured accurately. The next injection is to see the amount of oxygen that the tumor is (or is not)consuming, then one for the amount of blood sugars that the tumor may be consuming.
During all these scans … and I mean the entire time, you can’t move a muscle or the process basically has to start over. It’s important because when the Doc reads these scans they have to line up with older scans, and with each other. This is the reason they tattoo’d me in the beginning … so that alignment can always be reproduced. Any movement does two things. One is of course it makes it almost impossible to line up with other scans and secondly, the images blur when you move.

So if you want to get out of that tiny little tube … you’d best be still. It’s a tough one because it’s kind of like laying down in an empty toilet paper roll made out of metal! It’s tight (not for claustrophobics), very noisy, and there seems to be an inherent lack of air movement. Not a comfy situation. Oops, and can’t fall asleep either (although I’m not sure anyone actually could because of the noise). People tend to move in their sleep and again, that’s not a good thing in this situation.

My guess is that I spent about an hour and a half to two hours … not fun.
The next thing was to get a series of chest x-rays and a few other what seemed to be random bone and joint pictures. The purpose of these is to check and see if there has been any cancerous metastasis. Basically, they’re looking for cancer they may have spread or took up residence somewhere else in my body. The most common spots for this to occur is in the lungs, chest (especially the rib cage), and joints. In chondrosarcoma, the joints are important areas to keep an eye on.

By the time I was finished with that I was ready for some fresh air. We took a walk outside for a few minutes and looked at the new building MGH is almost finished with. When it’s finished it’ll house most of the equipment I’ve been talking about since the beginning of the blog with the exception of the actual proton machine which requires the better part of a building on it’s own.

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Last winter(2009), while I spent those incredible three months in Boston receiving proton treatments for a cancer that I’d never even heard of before, and one that had a good chance of bringing my life as I knew it, to a screeching halt. I found myself with this profound desire to record the entire experience … but why?

One of the primary things that helped me through that experience was that I wrote and photographed my way through it … and as many of you know I “blogged” a lot of it right here. I also managed to stash away as many notes as I could for later on … I had no idea what I might do with them … but I simply wanted and needed to get it off my mind, I wrote and photographed every day. No matter how bad or sick I was feeling, I made sure that I’d least make some kind of journal or blog entry and try to photograph something.

Flash forward a few months and you know I’ve been working everyday at my job, and running a part-time server and web-hosting business from home, and basically you’ve got a handle on the bulk of my daily activity. I’ve been working … and that’s a good thing, believe me, I’d go nuts without it.

It’s been just about 6 months since I finished treatment (last holiday season) and I feel like I’ve been learning a lot (actually an incredible amount) about living with cancer … after-all , that is my current situation. To live everyday with the challenges and discomforts, and all the other strange things that a cancer can do to your body and mind. I’ve learned, … adjusting as I go along, making life as comfortable and as productive as I can.

I’ve also learned that I can understand, and relate to, any other person’s life-condition. Which in itself, is a very powerful thing.
I find I have a commonality with so many people … as though I’m part of a group of special people that are surviving in a special environment that not everyone has the pleasure to experience. I mean that seriously.

I know there’s a lot of people out there that think “oh those poor suckers, how do they do it?” But do you know what I’m finding? What the truth is? There are many like me and you know, we don’t bullshit each other. There’s a silent understanding between those that are in a similar condition or situation …. and it can provide for a wonderful experience if you open up to it and just let it flow from you.
There’s nothing like being in the “driver’s seat”, first-hand experience is (unfortunately), the way to go here or at least it is for me. It’s this commonality, that brings me to my latest photography project.

I’ll leave out the story of my life’s photographic experience mainly because it spans over a lifetime and I’m not really sure that it’s relative to this project. I will say that since I was a teenager and had built my first darkroom, developed my owns films, printed my own photographs, I’ve never really stopped. Camera’s changed, darkrooms turned into computers … but the art of taking a relatively decent photograph hasn’t really changed.

Back to today: The Project,
Here’s what’s so strange… I don’t know if it’s some personic magnetism, some kind of karma, so called fate (call it what you will) … but since my own personal experience with cancer, which simply isn’t that long ago, I’ve met so many people with similar cancers, tumors, and other totally debilitating diseases … that it must be, meant to be. For some unknown reason this is being literally shoved in my face and I just can’t ignore it any longer.

Karma has a funny way of guiding you to where you ought to be, and then it’s up to you, to do with it what you will. Between that thought, and an uncontrollable desire or need to photograph and write about my experience, and the meeting of so many others, has led me to the point of bringing this experience to others in a way that may be useful. A way they’ve never experienced before. To see life with cancer under a different light.

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Sleepy and Me – Pushing Your Limits: Thursday, May 20, 2010

The other day I wrote a little bit about “pushing the limits” after cancer treatments and I thought I’d comment a bit more about it. I think it’s an important subject to look at, just about everybody that receives any type of cancer treatment, is effected by low energy or will be.

It’s literally a daily battle, and I believe there can be several reasons to suffer from lower energy levels, then those you might say you’d normally have. Some of it is literally physical and some of it can be can be psychological and both, can be equally as dangerous to your health.

Before being actually diagnosed with cancer I felt my energy level dropping. I attributed that to age, and working really hard all the time. Long hours, raising a child, running a business, being involved with several groups, doing radio shows etc. etc. Busy, … sixteen to eighteen hour days were common and a ten hour work day was like taking a day off. No kidding.

Not unlike most people, this went on for years. So long in fact that I really didn’t notice what I was doing. Burning the candle at both ends doesn’t begin to describe the lifestyle. It’s crazy when I think about now, but that’s what life was like then, and it wasn’t long ago.

So last August when I was diagnosed with cancer, it was one of the most difficult things for me to deal with and face up to … and to be completely honest, I’m still dealing with it. Slowing down, letting things go, wasn’t in my vocabulary. Was my body telling me it needed to rest?

My doctor sure was … well after he rushed me off for treatment that is.

During treatment, the radiation was so overpowering that I couldn’t do anything but sleep. I’ll probably never know for sure what percentage, of that amount of sleep, was due to needing rest, and what was caused by the treatment … but I slept more then, than at any other time in my life, by ten-fold.
On a daily basis, after being treated (which took about two to three hours a day including travel time), I’d go back to where I was staying and go back to sleep, and I mean sleep. I was literally sleeping close to twenty hours a day! I think back now and still find it hard to believe.

I’d sleep for ten or so hours, drive to the Proton Center, get treated, drive back home and go back to sleep for ten more hours, and get up and do it again. It was almost embarrassing.
Of course radiation at the levels I was receiving, was causing a lot of this … it is without question exhausting. I don’t care how tough you think you are … it’s going to affect you. You may get away with it for the first week or so … but eventually, it’ll catch up with you.

I’m getting sleepy just writing about this and re-living it!

I think part of my problem was that I started off exhausted to begin with … but then who isn’t over working these days. I mean you basically have to be if you’re going to survive in today’s world.
Who’s idea was it anyway? the idea that we work all day, and every day in order to simply feed our families. What a ridiculous way to live! But we do, and we do it everyday. I curse the bastard that came up with eight, ten and twelve hour work day. Our entire economy is based on it. But let’s not get off on the political reasons why life is the way it is … for the sake of this writing let’s just understand that in this country we work too much, and too inefficiently, and that’s that.

Any young couple raising a family today is suffering for more reasons than I can put in this post … but they’re especially suffering from being over-worked or under-paid. I know families where both parents are working two jobs each and they’re barely able to afford to keep up … and that’s a crime. Who’s raising the kids?

While we’re off topic, I’m listening to the news while I’m writing this and it’s so freakin’ discouraging to hear all these stories about BP and the Gulf oil leak, Illegal Immigrants, the financial crisis, the wars in Pakistan and Afghanistan (yep, we’re still at war, in fact it’s been pretty constant since ahhh 1776?), BPA plastic in our drinking bottles, Autism in our kids, the evil Monsanto corporation, and the list can on for-ever. Our children are getting dumber and dumber, our society is falling apart and the main headline news is covering more and more on Tiger Woods then anything else.

What’s wrong with this picture? Talking about the Gulf oil leak, here’s one the things that really got to me today. On the news they said that a “cap” of seventy-five million dollars was what a company like BP was liable for, when it came to paying restitution for people’s livelihoods that were affected by the oil spill. We’re talking about the entire Gulf Coast of the United States.

BP profits are approximately ninety-three million dollars a day. Now, you tell me who in our government signed off on that deal? Which one (or group) of our wonderful politicians thought that’d cover the tab? How do deals like that get signed off on … and don’t tell it’s Obama’s fault. Can you say lobbyists? or payola?

Ok, ok … I don’t want to drift off on politics, we were talking about young couples trying to raise a family in today’s world. No, no, we were talking about the effects of cancer treatments including chemo, radiation etc.

Back on topic:
Now, add to this therapy induced sleepiness, that you’re usually not feeling very well, and you begin to get the idea, of just the side-effects of cancer treatment. At the same time … your body is working overtime fighting the cancer that running through your veins! So there are plenty of physical reasons why one might experience exhaustion during treatment.

Then there’s the psychological effect of having cancer. Or are you too “cool” to admit that something could have a psychological effect on you? While this may not appear to a factor immediately, it will be. It can have an incredibly powerful, almost depressing effect on you, and that alone can be draining, big time. Even if you’re keeping the spirits high (and you should be), it is still a force you have to deal with.

Now I’m saying this negatively or trying to frighten you, I mean it. Day after day, you slowly realize that having cancer isn’t like having a cold, or a sore throat, … not even the measles. You won’t wake up in a few days from and get over it, not even in a few weeks, … not even when they tell you, “you’re clean” or in submission.

At night, in bed, when it’s quiet and you’re alone with your thoughts, wondering if all these treatments of chemicals , radiation, injections , and scans are actually doing any good. It starts to “sink in” that this is for-ever. You’ll have to deal with cancer for the rest of your days.
I should say here, that this is one of the most important reasons why you should put as much effort as you possibly can, in keeping your spirits high, without getting carried away with thinking you’re miraculously cured. I’ve said before in this blog that I don’t believe in the positive thought theory (here’s the link ) and I still hold that to be true. Maybe the key here is finding a happy medium.

Don’t believe for a moment that if you go through a few treatments and everything will be great again, and don’t think you’re going to die in three days either.

Take some time and measure up your situation. Understand where you’re at. Start working at, or completing some of those goals you’ve always had, but never had the time to accomplish. Even if it’s something silly like throwing out all those boxes of stuff in the basement or attic.
Maybe you’ve always wanted to do something, something that meant something to you personally … what-ever that is.

Maybe this is a good place to stop for the time being. Know that energy is going to be low, and know that you can still do things that require energy, but that you simply need to adjust. We’ll discuss this again.

There’s a reason they call it “living with cancer”.

I haven’t written for the blog much this past month and some folks have been writing asking “why” and if everything is alright. So the short answer to that question is “yes”, everything is fine and dandy.

Now here’s a longer version of fine and dandy:

My last post was April 24th and since then a lot has happened and even a few things have changed. One of the more interesting items that’s been accomplished is that we did our last radio show on April 27th!

I written before about the reasons why we were going to stop broadcasting … but now it’s done. I’ve packed up the studio equipment, everything from cords and mixing boards to microphones and music, and along with all the other equipment that goes with standard broadcasting, boxed it up and prepared it to move to the StreamingOldies studio over in New Hampshire! Now that’s exciting and I’ll be posting more about that over the next few weeks.

What it does for me, is buy more time to work on finishing up some of my current projects, and more time for things like writing for this blog. I simple never realized, just how busy our lives were until I wanted to begin disassembling some of it. It’s been a challenge just finding the time to slow things down enough to begin the process of closing some activities down. I don’t like to simply walk away from things … I like to take them to the end and if I can, pass them on to someone that wants them, and that’s exactly what we’ve tried to do.

More time? Yes, I’d like to do a little traveling (which is another post on it’s own), and have some free time to work on some cancer related projects I’ve been thinking about. No, I’m not going away, I’m simply changing the things I’m involved in, and refocusing my energy on what’s of the utmost importance to me now. Life has changed. You might say I’m altering the matrix.

Even at home, I’m rebuilding our network for easier maintenance, adding new Windows 7 computers, network printers, wireless devices and so on … all in preparation of these changes that are coming.

Which brings me to an interesting point. One of the most difficult things about having and living with cancer, or any disability for that matter, and something you don’t hear about very often is the “time factor”. I know, I’m certainly not the only busy person on the planet, but I was (and still am), a very active type person … but scheduling time, for a cancer patient, can be, not only one of the most daunting tasks, but it also brings a factor of undependability.
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Here it is Tuesday again, and again it’s a busy time. Just a short note for this evenings post:

I had a few rough days this past weekend of not feeling up to “par”, but am happy to say that it’s starting to lighten up quite a bit. Not sure what it was all about but I got that lovely leg pains again, as though aching deep in the bone. It does seem to have stopped again.

It could’ve been caused by over doing it. This weekend I played a lot of Wii and went swimming … so I got plenty of exercise that maybe I shouldn’t have. Plus my “little man” (Alberic) ran me ragged … as kids often do!

Besides that, all is relatively well.

For those that asked about, and wanted to listen to the radio show I have put links to it here … bookmark the page if you wish. You’ll see the links down at the bottom of the page.
Radio Show Link. Be aware the show is not about cancer … it’s about music, politics, and some light-hearted fun… every Tuesday Night.

You can also send an email to shabby@spoxtalk.com and get on the weekly mailing list. The only email we send out is once a week about the show. It simply serves as a reminder.