Chondrosarcoma – ah shit, bob's sick

I felt like cooking this evening, besides wanting to give Sher a break (she’s been doing a lot of the cooking lately), I felt like something different, what I call “adult” food. Sometimes after cooking and eating simple meals (especially when Alberic is around), I tend to crave something different. Besides, we all too often fall into the habit of cooking and eating the same few dishes. Same can be said for eating out. But every now and then I’ve got to have that “something different” taste. Tonight was one of those nights.

I ran down to our local butcher shop and bought two boneless pork chops, stopped at the farm stand and grabbed some wonderfully fresh picked sweet corn. That is one thing I have to say about Vermont, during the season when fresh corn is available, Vermont has some of the best sweetest corn money can buy.

I picked up a few more things and made my way back to the house.

Prep in the afternoon: Now this may sound like a complex recipe but actually it’s rather simple and doesn’t require much time to prepare and almost no time to cook. Of course that’s one of the great things about most Asian cooking styles, they cook quickly … which in turn, if your food is fresh and healthy, you end up with a fresh, delicious, healthy meal with limited effort.
So prior to cooking anything, I took the time to prepare all the veggies for stir-frying. The prep, is key for this type of cooking.

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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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I simply can’t believe it’s been over two weeks since I last posted here! Somehow with summer being finally here, it seems time is slipping by faster and faster. Where I thought I’d have lots of free time to write, program and draw, it just seems that the season has absorbed all that time in a different way than I expected. That’s not necessarily a bad thing, but more of an unexpected thing. It’s just crazy the way time is flying by and somehow more of it is being used up on things like lawn mowing!

Over the last week or two I’ve several emails, phone calls and what-nots, asking how I was doing and just general chat … so I figured it’s time to write a little something and let my world know that I’m not only alive, but doing pretty well lately.

In general, I’ve been feeling pretty good, not much of a change, which in my case is a good thing. I can’t say that I’m living a pain-free energetic life, but I am doing what I consider reasonably well. The meds continue to rob me of energy, but allow me more motion then I’d have other-wise. I consider that a fair trade. Now and then, especially when I don’t get enough sleep, I’ll spend a day or two “down in the dumps”, but it seems to pass by as soon as I catch up … so that’s understandable too.

I’ve been swimming quite a bit, trying to wheel chair at least a mile every night after dinner (except the past few days because of the heat), and continuing to work around the house every chance I get. That’s the extent of my exercise which isn’t bad for me. My daily diet hasn’t changed much except during the heat-wave, which I’ve experienced my whole life … when it’s hot, I eat less. I think most people do that so I don’t find that surprising.

This past week I went to our local Blood Lab, and got all my blood tests out of the way, next week on the sixteenth I have an appointment with my primary care physician, Dr. G. Clay for a general checkup and discussion about pain management. As I stated before I am considering medical marijuana for boosting my appetite, pain control and sounder sleep.

On the twenty-second of July, I return to Boston for MRI and PET scans to see if there has been any changes in the tumor or cancer.

I don’t feel like there has been any change for the better or worse. I’m pretty much “in tune” to what I’m feeling these days and intuitively I don’t feel anything is happening. But I agreed to continue to be watched … and so, away I go.

Currently, it seems that the grip that chondrosarcoma has on me, has not continued to worsen. What I mean is that the pains and discomfort that were there last year when I went for treatment are still there but, they are not worsening and that’s important for me. I already have a hard time walking and maintaining any reasonable level of energy. I consider myself very lucky in the fact that I didn’t totally lose mobility or any of the other functions that were in jeopardy of being lost. I pulled out of what could’ve been a total disaster pretty well. I didn’t take that huge hit that often brings people to a state of not being able to care for themselves … and for that I’m thankful.

Will I be so lucky next time? … who knows? but hopefully it’ll be a few more years before I have to deal with it. So in a nutshell, I have to say that for the moment, the proton therapy that I received seems to have bought me some of that “time” I was looking for.

So what else has been absorbing my time?
Well, last week Alberic and I hooked up a little irrigation pump for our garden! For those that don’t live on the east coast of the US, we’ve been experiencing not only drought like conditions, but a tremendous heat-wave to boot! So last week we set up a water pump in one of our ponds and pumped water through a series of hoses, uphill to our vegetable garden.

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