Chondrosarcoma – ah shit, bob's sick

Quick note about the trip to Boston:

This past trip to Boston was in one sense a tough one, and in another sense one of the better trips I’ve had. Driving was absolutely awful, mainly caused by the amount of snow still in the roadways. I was surprised to see so much snow still on the roads. Getting out to Chelsea/Harvard Imaging was truly a trip through narrow, snow bound roads, and impatient morning drivers.

The good news is, that after the tests, scans, needles and everything else, there appears to be no change in the cancer. This is good news. Nothing is happening. Good enough to declare that I don’t have to go again until September … that alone is awesome.

These tests were different then what I’ve had in the past, different chemistry and different scanning machines. At the time, the mix of concoctions put through my IV made me fell rather ill and I thought it would be a lousy trip home, and was planning on feeling poorly for a few days, but to my surprise, they seemed to dissipate quicker then whatever they used in the past and by the time I had spoken with Doc Delaney, I was already beginning to recover.

This made the trip home much easier. Although I was really tired from driving and the long day, I wasn’t feeling nearly as poor, as in the past.

To put this trip in short form … it wasn’t bad. They did take some photographs for documentation and as always lot’s of questions, and it is one of the few times I’ve seen Doc smile and seem satisfied with what’s going on. I couldn’t call this trip, and Doc’s work, any less then satisfying.

So while this Chondrosarcoma saga is far from over, I do feel that stabilization may be on the way. Yeah, I have my crappy days, but life is beginning to get “peppered” with a few good ones again now and then. And that my friend, feels awful good.

Now back to work!

What’s been going on in life? Well, a lot has, in fact so much that I haven’t had time to keep up with it all. What else is new?

Keeping up with things in life, not only requires a constant level of energy, but a high level of concentration and both of those items have become as valuable a commodity, as just about anything could be. Oh, what I wouldn’t do for more energy.

You know those five hour energy drinks? … little tiny bottles of nasty tasting stuff that’s supposed to give you a boost through the afternoon, or give you “jump start” in the mornings? I could drink a dozen of those things right after waking up from a twelve hour sleep and go right back to bed.

My average day is actually rather simple … I’ve desperately tried to redesign my life’s days to intentionally reflect simplicity because of this energy problem, but unfortunately, I haven’t found that right combination that provides the increased desire to sleep and rest more often, and still accomplish the things in life that I need to do, in order to survive both financially and mentally.

In fact, the other day I said to Sher, that I thought maybe, at one time, long, long, time ago, that people might have hibernated like some animals do during winter. For the first time, I can honestly relate to this mode of living. Really! I mean, if I could pack myself away for the winter months, I’d do it.

There are several things that just seem to ‘use up’, absorb or require lot’s of energy that I just can’t (or maybe not willing to) do without. I mean, like working. None of us can get by without working. How could you? Work not only has financial reward, which helps a lot, but also the sense of accomplishment that we all need. That’s something I’m not willing to lose or reduce.

Another thing is art (for a lack of a better word), I consider art to be a major part of a balanced life. This includes everything from keeping sharp on my guitar playing, to writing, to creating 3-D computer art, and everything in between. If you think about it, your art time, is often the only time you get to “work” for yourself, sort of speak. The Labors of Love.

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Yet another thing is children, children require lots of time and energy to grow. Ha! sounds like I’m talking about growing a plant or something … but it’s true. It’s a never ending thing. Often I blend several of these things together, in an effort to try and accomplish two things at once … like the old saying ‘killing two birds, with one stone’. Hence to the idea of teaching Al to play guitar. While getting it out of my system, it’s also teaching him. Last week I did it again with my computer. I showed him how a computer language can render a beautiful piece of art, simply by writing a file and sending it to a rendering engine to interpret it. We designed a Star Ship for fun.

For those that understand computer art, we used the POV-Ray engine (Persistence Of Vision, Point Of View), and a simple text file to create the ship below. While it’s not finished by any means, we do have a good start to it. For those interested you can read about the scientists that designed the render engine and language, why and what it’s all about, at POVRAY.org.

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I’m was sitting at my PC earlier today, staring at the monitor, thinking about what I should be doing instead of just sitting here. I could at least be writing something for the blog. With all the things going on in life you’d think it’d be easy to conger up something fun to write about. It’s that time of year between the holidays and while usually busy, I should be cheery and full of exciting things to say …

…. but not today.

Sometimes it’s a struggle to put, not only your thoughts in order, but then into words, and words that make credible sense.

It’s a cold, cloudy winter day here in New England, grey with a heavy overcast. A light mix of snow and rain is falling, and as I glance out my window, I think it’s the kind of day that often brings a rafter of wild turkeys running through my backyard … but somehow, it seems darker and colder then it ought to be, still be allowed to be called a day.

My bones are aching too, I’m not sure if it’s from the dreary kind of weather we’re experiencing or if it’s just par for the course of living with cancer. But I guess that may be a déjà lu for those regular readers. Yes … it’s a real phrase … no kidding, like the more common term déjà vu which basically means “already seen”, déjà lu means something you’ve “already read”, or “read before”. On days like this, I often think I’ve written enough … maybe too much at times.

While I sit here, I can hear the occasional car drive by outside with the sound of it’s tires working their way through the evening slushy mixture, and I think that if it were all snow, I would have never have heard it. I’ve always loved the way snow muffles the sounds of society … that, almost total silence. Funny thing too, I’ve heard that sound everywhere I’ve lived (at least in the northern regions of our country), whether it was in the city, suburbs or rural areas. It always there …. yep, even in the middle of New York City the snow muffles the sounds outside in the streets. Even out in the woods the sounds of nature are silenced by snowfall. Just one of those beautiful things in life I guess.
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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.

Just getting around to writing about our Thanksgiving weekend! and boy did we ever have a busy one at that. But let me start off by saying a few things about what I’m thankful for. For one, I’m thrilled to even be celebrating this day … there was a time last year when I wasn’t sure that I’d be celebrating any more Thanksgivings or birthdays … so yes, I’m thankful for just being here with my family, friends and anyone reading this.

Last year at this time, my spirits were pretty darn low and with a grim outlook on the future, I have to admit that I was taking beating from all sides, both mentally and physically. But things have settled a bit since then, and thanks to the un-ending support from friends, family and even strangers, I’ve learned not only to do the “live one day a time” thing, but to also appreciate and enjoy the time I do have and make the best of it… and that’s what I’m most thankful for.

Yeah, I know I’m not going to last forever … but then, who is? It’s been a struggle at times to keep my mind-set straight and moving forward … but I think it’s an important point. Not only for me, but for those around me, and those watching. I want others in my situation to know they can do it too. That’s one of the reasons I wanted to continue to work, accomplish things, continue learning … keep pushing, and not give up.

It’s an important lesson for children too, they need to understand that when you give up, you lose.

It’s a dual weekend for us, Thursday was Thanksgiving and Sunday was my birthday, so of course we combined those into one, long weekend party. I was born on Thanksgiving Day in 1952 so it’s always been a really special time at our house.

Thanksgiving Day (Thursday), Sher and I had a quiet day by ourselves, we made a nice dinner and relaxed a bit … armed with the full knowledge that the weekend was going to be the busy time for our house. Friday we did some of the cooking and preparation so that we could spend time with the kids while they were here … and that worked out well.

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