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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For the past six months I’ve occasionally written posts on wheelchairs and my struggle to find the right chair for me, but not only for me. Something that would be considered a decent chair for just about anyone  that spends any amount of time in a chair.  It’s important  to realize that it not only needs to be safe,  reasonably easy to operate, easy to maintain, easy to transport from one place to another,  and comfortable too.

We’re all pretty much accustomed to the standard  type of chair that you see in hospitals, or the usual type you rent for short term immobility, and it seems most people accept those chairs as good, some even say they’re great.  While you’re pushing old grammy down the nice polished smooth floors of a hospital, it’s hard to imagine needing anything more in a chair. It rolls, transports the user or patient to where-ever they’re going and that’s it primary purpose.  What else could you need or want?

This past January (or about January) a friend had lent me this type of chair to use until I could get my own. Our insurance company requested a prescription from my doctor (which is standard fare), and that they would pay for the chair, minus twenty percent. Well, that sounded like a good and fair deal to me.

So, I thought I’d try using the borrowed chair for some tasks whether or not I actually needed it at the moment , just in order to try and get accustomed to using it. I can still get around a bit on my legs, and as I’ve mentioned many times in this blog, most daily chores I can handle without any assistance.  What I was looking for was experience and to learn about it.  Someday, the doctors say, that’s where I’m going to end up full time  …  so why not get ready?  Even now, I can’t take the dog for walk, can’t walk around the stores, etc,  etc.  Short distances, I can do, and without any problem. About one-quarter city block is the maximum I can go, and it’s really amazing how much of our lives that covers.  But there are still times when you want, or have, to travel further.

After walking a bit, my legs tend to go numb and the feeling just drains right out of them. This makes it impossible to walk of course, and then I have to sit and wait until the feeling comes back and I can feel my  feet again … and then I’m fine and can continue on. What that means on a daily basis is that it can take me an hour to walk a block …. and that’s where the need for a chair comes in. Once my legs are tired, it can take the remainder of the day to really fully recover.

Once your legs are tired, you have to sit down … I have to … no matter where I am or what’s going on around me. Sitting on the ground is next to impossible because once I’m down … it’s really hard to get up. It’s a kind of messy situation and it requires is knowing your limits and preparing for it.

Anyway, as an experiment, I got in the borrowed chair and tried to get the “feel” for what it’d be like. Actually, I’d recommend this practice to anyone. Spend an entire day in a wheelchair and see how much of the daily things you do, still seem like simple tasks.  See what your arms feel like. Heck, you don’t even need to spend the day … just spend a few hours … you’ll get the idea quickly.

My goal was to wheel out of my driveway and down to the end of our property line. We live on a relatively flat ground, at least by Vermont standards and I thought this would be a great test. It’s not very far, maybe three or four hundred feet. I figured this will be a breeze and even thought about going down the road a bit further cause that’s where we’ll often walk the dog. There’s a great little swampy area down there and the dog loves walking that way to check the frogs and other interesting swamp creatures that reside there.

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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.

Just a real quick note:

 We had a great weekend, along with perfect weather. We managed to get quite a bit done around the house, and a bit of entertainment time too! It was a much needed weekend. I even managed to catch up on some much needed sleep … and that was fantastic to say the least.

This week is going to be an exciting and busy week. Tuesday and Wednesday it’s work where we’ve been extremely busy, and then on Thursday we take off for Boston for a graduation at M.I.T. and a little bit of celebrating of Alberic’s twelfth birthday.  Hopefully with a trip to Boston’s Science Museum in there somewhere!

I’m feeling good, and looking forward to the trip to Boston. Hoping that getting around the city won’t be too difficult and this fantastic weather holds out for this coming week. Alberic is looking forward to seeing and being in some multi-story building. He’s always had an interest in city architecture, this’ll give him a chance to experience it!

Hopefully, I’ll get a chance to do a bit more writing before we hit road. I hope all you had a good holiday weekend too … and let’s all keep in mind what this holiday is all about.