Chondrosarcoma – ah shit, bob's sick

Seemed so quiet around the house today. It’s been a long time since I’ve spent any time alone at home. Sher has gone South to see relatives for a few days and Alberic has headed off to Summer Camp for a week. So it’s me, two cats, and a dog for the next few days! You heard right … I’m fending for myself and doing damn well at it too .

So what did I do with all this time on my hands? Well, today’s weather was just the perfect Vermont summer day. There’s a wonderful breeze, about seventy-five to eighty degrees and just simply lovely. What a day to be alive! I decided I’d take a short walk through our woods and check things out.

I haven’t walked our property very much this past year and with no one around I could take my time, move at my own pace, and rest whenever I wanted to. Not that others rush me, but I always feel obliged to try and keep up with others and not slow the pace too much.
For those that walk through the woods now and then, you know the forest and streams are always changing. They grow and the stream change shape with new twists and turns. New trees and plants pop up, and you can usually see the tracks of deer and moose and others that pass through in search of food, water and refuge.

I love walking the forest and the peace of mind that comes from spending time there. I mean just think about the word forest … “for-rest” … need I say more? I always feel like I can think clearer after a walk, I’m more in touch with myself, my emotions, and it always increases creative thought. After walking through the woods I always want to spend the rest of my day writing, painting or playing music. For me, it’s the biggest “turn on” when it comes to creativity and keeping that edge sharp.

Today I took my camera and walked the trails I’ve cut and maintained over the years. The ponds and streams were full of fish, frogs and others, splashing as I walked by as if to say “come join us”. One section of the trail follows the stream a distance and it was simply incredible to see all the life in the water. That’s one of the great things about having ponds and stream to walk … everything in the forest comes for water, so it’s always lively. I crossed a deer run and saw those fresh little “rasinettes” as evidence that they’d recently traveled through on their way to drink.

Read more…

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.

Read more…

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.

Read more…

Somehow I thought I’d have more time for writing once I dropped the responsibilities of the radio shows and all that went along with that world. Boy, was I wrong! Maybe it’s the summer season, maybe it’s taking a bit more R and R … I don’t know, but whatever it is, time just seems to be flying by.

For those interested in our recent Boston trip, there are lots of photos here: http://picasaweb.google.com/116405034524500132179

I had and still do intend to write more on Boston but simply haven’t had the time to do so.  

One of the things that’s been keeping me busy is that I finally got my wheelchair … and let me tell you what a difference it made. I have planned a post (with some photos) about it for this weekend.  Hopefully Alberic, who took most of the photos on the Boston trip will help me take some pics of the chair and explain the difference between a well-made wheelchair and the typical chair you see at most hospitals.

Last weekend I went to the mall in Rutland …. and what a pleasure! Now I’m personally not very big on malls, and there’s between little and nothing I want to purchase from them … but it was great to be able to take Sher and let her go do some shopping … which is something she does  enjoy. Earlier this evening, we went out and walked the dog together … something I haven’t done for almost a year. OK, I didn’t walk, I wheeled … but still, it was great to be able to go along.

This weekend is also Father’s Day and we still have to do a bit of celebrating for Alberic’s birthday … so it’s going to be a busy, but fun time. Al’s last day of school for the year was this past Wednesday, and next year he’ll be going to a new school.

We finally got all the light fixtures replaced in our house from last winter’s electrical disaster.  Can you believe it took this long? I have to admit that this time, it was not the insurance companies fault for slacking … we (well, mostly Sher) had a really, really hard time finding replacement lights. I know that sounds crazy especially since we do a lot of shopping online, but it was very challenging to find the right things. Crazy, but we’re both happy it’s finally finished. They are installed and lighting up rooms! Life is wonderful!

I’m also beginning to do research on the possibility of using medical marijuana. It’s an incredibly complex set of rules, regulations and hoops to jump through but the rewards can be extremely helpful. Let me explain how this could work for me … or better yet, let me leave for my next post. Ohhhh … so much to write about.

It’s getting late and I have to work tomorrow morning, but over the weekend I’ll try and write a clear explanation of why I want to try taking that route, even though it’s definitely not the easiest way out of the daily pain and nausea issues I face. It’s bedtime for me …. good night Alberic.

We’re back. A fast and furious trip to Boston’s  Cambridge area, proved to be the most fun Sher, Alberic  and I have had in some time. It was totally awesome trip with so much packed in our short stay that parts of it are still unraveling in my memory.

We had a fantastic hotel room on the River Charles that overlooked both the river and parts of Boston skyline. That’s one of the things I love about Boston, it’s big enough to have the feel and all the great things cities have to offer,  yet small enough that traveling around it is easy and simple whether by car, train, bicycle, boat, foot, wheelchair or any other mode of transportation you can think of. It even has a Segway rental!

Now my last trips to Boston weren’t exactly filled with fun and joy by any means … but this one was different, I enjoyed this trip to the max. Alberic hasn’t had the chance to visit many cities and I think he really got a taste of what life can be like there and it’s many offerings, and Sher has been many times but not for a long time so she felt right at home.

Our primary goal was to attend Mike’s graduation at MIT (Massachusetts Institute of Technology).  Now if you don’t know anything about MIT, I suggest you Google it because it’s just too much to write about here.  I will say that it is one fantastic place, where our future is being designed by the worlds brightest students. Brilliant is probably a better description. I have a new found faith in the future … now if we could only stop warring.

This year, two thousand, five hundred and thirty-three students graduated in every field of science I’ve ever heard of and a few that were new to me.  That’s fifty times the amount of students in Alberic’s entire school!

Being disabled, I must say that we were very well taken care, and help was available from the moment we reached the grounds, right up until the moment we left. Everyone was so helpful and courteous that it was hard to imagine needing anything more.  To say the least, the entire experience was awesome.

That being said, I should mention here that living in the city of Boston appears to be much more friendly towards those with a disability, maybe the word is “disability-friendly”.  Almost everything appears to be set up for wheelchair access.  Basically, getting around this beautiful city in a wheelchair is a no-brainer. You can wheel anywhere you can walk … and Boston is a “walking city”. Everything is close and compact. I guess I’m sounding like a travel agent … but it’s true.

The graduation ceremony was simple awesome. Ray Stata gave the commencement speech and basically lit the entire place on fire! Not bad for a 75 year old.  If you’re not familiar with Ray Stata, Google him and read up. We wouldn’t have a tenth of the technology today without him. Below is a pic of the Stata Center in which Ray, his wife Maria, and Bill Gates have built on Massachusetts Avenue near MIT.

But there was much more to the ceremony then Ray Stata’s speech. The student president gave one of the most inspiring speeches I’ve ever heard, let alone from a young person, and really gave me hope for the future of humanity. If this is an example of the direction that MIT is taking its students, then I have all the faith in the world that mankind will solve all these problems that our world faces today.

There’s a lot more to write about this trip, and over this coming week I have lots of photos and stories to share, but that’s it for this evening.  We also went to the Museum of Science, had lot’s of great meals, and made plans to return.