Chondrosarcoma – ah shit, bob's sick

I’ve written this before, but every now and then I find it not only important, but necessary to repeat. Let me say “if you’ve sent me a personal email, especially within the last month or so, and I have not replied back to you … please resend it”. Chances are there’s a copy in your “sent bucket” of your email program.

While I don’t have tons of extra time … I do, very much enjoy reading and replying to all my email …. it’s important to me, personally. It has become an important part of my day. I say this because just today as I went to empty my junk mail folder, I saw an email that I had missed from (Judy G) …. but it was too late, it was gone before I had a chance to save and read it. So please … resend any recent correspondence if I haven’t already personally replied to you.

Since I’ve started this site, I have communicated by both email and telly, with some of the most interesting people I’ve ever met …. and I love that! It’s nice to hear from people, it’s supportive, informative, and rewarding for all.

Email is this amazing two-way street of conversation …. so many have helped me get through tough periods of this cancer, and I know I have helped others in return to understand what it’s like to be in this situation. Many have written powerful messages to me and we keep the correspondence going. I’ve heard many times that some “never knew” what thier parents or mate was going through, or the emotional experiences they went through.

So please, please, please … if I don’t personally reply in a few days … resend that email.

Thank you … I love you all.

Last month I signed up for a Netflix account.  It wasn’t the dvd rental part of their service that interested me, but more the streaming aspect. It was recommended by a friend and after thinking about for a few days I decided to try it out. They had a thirty-day free offer … so hey, what do you have to lose? You can watch just about any movie, documentary, TV or anything else ever put on film … instantly, and on just about any device that connects to the internet. As a matter of fact you can connect up to six devices at once if you so desire!

In general,  I don’t watch much television besides the news and that’s  not for more than ten minutes a day or until I get pissed off by political bullshit or the repetition of three or four news stories that the prime new stations insist on repeating over and over and over until you begin to believe that it’s important. Why they do that I’ll never understand, there’s so much happening in the world that could be reported on.

Actually, I hate to even get started on this topic because I really feel like our “news (if you can still call it that), is so heavily censored that I might as well be watching Sponge Bob. Not censored in the sense of the conspiracy minded, or our government (although that’s certainly possible), but censored by the news programs and stations themselves simply by covering so few items a day, and by injecting so much opinion.

Yeah, I know, … I was talking about NetFlix … let’s leave “news broadcasting” for another discussion before I get really carried away. Besides, the telly is often on in our house. Our pets (cats and dog) seem to be attracted to it, and certainly Alberic enjoys his occasional show and video games, and Sher watches a few Soap Operas …

NetFlix seems to be offering a pretty good deal if you’re a watcher, or even if you just occasionally watch something.

There are several different levels of accounts to choose from. The main difference between them is the number of DVD’s you can get mailed to your house each month. There’s no time limit to how long you can hold on to the DVD, but as soon as you return it (pre-paid mailer included), your next choice on the list is on the way.

The accounts work in two ways:

1.) You can keep a running list of DVD’s to be mailed to you.

2.)You can simply stream the movie over the internet to your computer or TV.

You get access to both.

It pretty darn simple to do (you don’t need to be a computer geek) and their website is very easy to use. As for variety of things to watch … it’s almost endless.  The genres are extensive … even the Foreign Film and Classic categories are packed with lot’s of choices.

So, next time you feel like watching a movie or some television show without commercial interuption (although you can always hit the pause button while you make the popcorn), try it out. Great if you have kids too!

I do wonder though … will there ever be advertising added? For those of you who remember the history of television goes like this.

At first we had simple broadcast television, they sold advertising to make money and stay in business … that makes sense … right?

Then along came Cable TV, their big initial selling point was that there would be no advertising because if you paid for the service, that fee would be enough to keep them going and growing. Not sure how long that lasted but it wasn’t very long.

Cable TV has now degraded to the point that it’s worse (for the viewer), then it’s predecessor … the very thing it was originally trying to conquer. Nothing but the very lowest budget reality shows, info-mercials, and News stations that get most their news from websites … they barely have reporters any longer … and paid staff that provides research.

Basically, if it weren’t for the internet connection … I wouldn’t even have it, and that’s barely an acceptable speed when you compare it to most of the other technically advanced countries in the  world. We’re on the bottom rung of the ladder … and, we pay way too much.

Now, along comes Streaming TV and Movies doing the same thing … no commercial interruption, dirt cheap, and oh, so convenient … but for how long?

Take advantage of it while you can … I’m sure it’ll change.  After-all NFLX is on the Exchange and it’s investors will be demanding higher and higher profits, pushing the company to make more and more dollars  … and so the cycle continues.  

Hmmm … frustrating isn’t it? It seems to all boil down to bandwidth issues and how our government (meaning our tax dollars) has already paid for most the infrastructure, yet big business continues to profit from it and in a massive way!

Think about what you pay monthly for access to bandwidth, of one sort or another. Cable TV, your cell phone, your smart phone,  maybe you’re like me and have a GPS service … go ahead, add it up … tell me it’s not expensive … and tell me you can live, work and survive without it. That’s getting harder and harder to do too.

Gee … where have I heard all this before?

Hey, in the meantime … make some popcorn and give NetFlix a “go”, it’s a lot of fun and it’ll help keep your mind off of politics and world  issues …  and enjoy the show, I’m watching Doctor Who tonight!

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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