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.

Alberic is twelve now, and really becoming a giant help to me when it comes to things like this. I explained the plan, what I wanted to do, and he jumped right in and gave a hand with every step of the way. Basically, we took a small drum, drilled some large holes in the sides, but along the bottom of it to allow water to enter into it. Lowered the pump in, and placed out in the pond. We then ran electricity to the pump, and hosing from the pump about two-hundred feet uphill to the garden and volia! Sher had a good supply of water to keep the garden going and growing.

I’ve also been putting some time into Rock Band Two … ok, ok, I know it sounds silly but there’s a reason behind why I’m using some of my precious time to play a video game. Once again it involves Alberic. We have several real guitars in our house, and for awhile now I’ve been working on getting him interested in playing music and “turning on” his creative juices, not always an easy thing to do with a child. Anyway, I found that by using the Rock Band video game and the idea that a child can almost instantly have success in playing an instrument, was enough to spark his interest … I’m not sure “spark” is right word … I should say it exploded!

Suddenly, out of no-where, he was into it so much and now is transferring that knowledge to his “real” guitar, that I can barely keep up with him. It’s frightening how fast a kid can learn something when he wants to. So now, every chance we get, we’re playing tunes together and having fun competing for speed and sound. Fabulous! Now, I have to play twice as much as him, just to keep him from getting so much better than I am, that doesn’t pass me by!

One more thing about Rock Band, it has not only exposed him to guitar, but also bass guitar (which he really seems to love, drums (for when he’s got extra energy to expend) and … and this was the most unexpected thing … vocals, yep … he’s practicing his singing, and to me, that’s made it all worth it. He’s memorized the words to dozens of songs, and even ventured into writing some of his own. When he was younger we’d often make up our own words to songs (just for fun and to personalize them), and all that’s paying off in a big way. It gives us something else in common, and something fun to do at anytime, whether we play for fifteen minutes or three hours … it’s always a fun time.

I also have an entire songbook of songs that I’ve written and worked on over the years that we’re working on drum and bass parts for … so plenty to do, and plenty to work on. Music for a child is something that lasts a lifetime, and I’m glad I’m able to pass that on to him. That could be a series of posts in itself.

I’ve also been doing a lot of computer art again using the POVRAY program. I started using it many years ago and learned the language to the degree I can write it almost as quickly as I can English. If you don’t know what POVRAY is, you can visit their website and learn (www.povray.org).

I guess this post is getting a little longer than I expected this evening, but I’ve also been building several websites for some our server clients. I’m also in the process of updating some of our servers in order to provide our clients with the latest and greatest capabilities that are on the internet.

So as you can see, time is not being wasted. I’m busier than ever with no time to waste. We did all take the time to go out and celebrate the Forth of July in Saxtons River, VT, where they had a great cover band named Shakin’ All Over (50′s and 60′s rock and roll), which Al just loved too!

Sher is well (also very busy), and things in general are going fine. Of course, I should mention that ninety-nine percent of what I’ve been doing wouldn’t be happening without her. She is the driving force that allows me the time, energy and desire to continue fighting forward.

A few last mentions:
Dave, … it was great to hear from you. I hope all your summer plans work out for you and your family and best of luck to both you and your wife for that family wedding! How exciting.

Bill and Rebecca, … I hope and pray things work out for both of you. Worsening health issues just plain suck and I hope Becca has as speedy a recovery as possible. If there is anything I can do … just say the word.

Rayster, I hope you’ve had a great couple of days away! Nothing like getting away for a bit and relaxing. Taking the weight of the world off your shoulders is an important thing to do now and then. I know it’s about time for Sher and I to so something similar soon!

Rose … I enjoy your emails so much, so exciting getting letters from the other side of the pond. Please give your daughter and grandchildren my best wishes. I hope you enjoy your visit to the Stocholm arpichelago! That sounds awesome! So glad you enjoyed the pics from Boston. I was surprised that you visited Boston in the late seventies … fabulous! I’ll write soon!

Sandra … thank you for all the txt msgs. and emails. As you can see, I’m pretty darn busy these days … but never too busy to reply. Thanks you.

Howard and Sandy … If you visit Vermont again, for sure we’ll play some music. How could I not? I’d love it. I’ll even make you both another shrimp dinner!

Steve and Sarah … glad you got a chance to talk with Sher last week. You caught me cat-napping (like a lot of folks do these days), I’ll give you a call over the next few days … are you enjoying the heat?

Mike C … I didn’t forget you man, just haven’t gotten there yet. Next time you’re in VT give a call!

Thanks to all that have written and called over the last week or so …

Oops … thanks for the pepper plants Harry and Kate. They’ll be in our garden this weekend!