Chondrosarcoma – ah shit, bob's sick

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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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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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.

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.