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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Wow! It’s just hard to believe that another year has gone by, and it’s been a crazy one too. Last year around this time I was just finishing up my treatments and travels to Boston and getting resettled at home. I wasn’t back to work yet, and feeling quite weak and tired from all the radiation and proton therapy … but I was also very happy to be seeing another New Years Eve.

But here we are now, a year later, healed and in decent shape, considering all that went down last year, and hoping this year will be better than ever! It’s certainly starting off that way! We had a great holiday season and for the first time in my life not only did we have fun …. we also got the house cleaned up and most of the decorations put away! Now that’s a first for me … usually my holiday decorations remain in place until at least mid February … but not this year.

So in the spirit of keeping this short and sweet, I wish everyone a Happy New Year and let’s hope we all have a better year.

Peace, Love and Happiness to all.

It’s been awhile since I’ve written about how daily life, from a health point of view is going, so here it is.
As a general outlook, I’ve been feeling pretty. My nutritional intake has increased (strictly due to MM usage) and I’m finally beginning to feel I have a controllable handle on it. Although far from ideal, I no longer feel like I’m slipping backwards.

The effects of proton treatments should just about be winding down. They said it take just about a year for it to do its thing … and it’s been about a year from the first treatment, and although the cancerous tumor remains on my lower spinal column, wrapped around the nerve bundles (which is what makes daily living uncomfortable), it feels different. I’d have to say that it appears to be either completely non-active or if it is active, it’s been severely hampered in it’s attempt to either re-grow or continue to grow.

This is a good thing.

My energy level is not as it once, and probably never will be, but I also seem to be having occasional days when it is pretty darn good. For over a year now I’ve literally struggled with simply staying awake for eight hours in a row, let alone expending any energy during that time, and now it seems I’ll get one or two days a week that I can go to work, work a full day and still have a little “life” left in me when I get home … and that is a really good thing!

Of course our sex life has taken a huge hit during this past year … but even that seems to be on the rise! (no pun intended).

So while things are not back to “normal”, and honestly I have to assume returning to past levels of energy is basically out of the question, I am beginning to feel like a reasonable degree of recovery is within reach, as long as the cancer doesn’t start moving around (metastasize) or return with a vengeance … and only time will tell us that. While I continue to have a few days a weeks that are “off”, I have a few that are “right on” too … and that is yet another good thing!

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Seemed so quiet around the house today. It’s been a long time since I’ve spent any time alone at home. Sher has gone South to see relatives for a few days and Alberic has headed off to Summer Camp for a week. So it’s me, two cats, and a dog for the next few days! You heard right … I’m fending for myself and doing damn well at it too .

So what did I do with all this time on my hands? Well, today’s weather was just the perfect Vermont summer day. There’s a wonderful breeze, about seventy-five to eighty degrees and just simply lovely. What a day to be alive! I decided I’d take a short walk through our woods and check things out.

I haven’t walked our property very much this past year and with no one around I could take my time, move at my own pace, and rest whenever I wanted to. Not that others rush me, but I always feel obliged to try and keep up with others and not slow the pace too much.
For those that walk through the woods now and then, you know the forest and streams are always changing. They grow and the stream change shape with new twists and turns. New trees and plants pop up, and you can usually see the tracks of deer and moose and others that pass through in search of food, water and refuge.

I love walking the forest and the peace of mind that comes from spending time there. I mean just think about the word forest … “for-rest” … need I say more? I always feel like I can think clearer after a walk, I’m more in touch with myself, my emotions, and it always increases creative thought. After walking through the woods I always want to spend the rest of my day writing, painting or playing music. For me, it’s the biggest “turn on” when it comes to creativity and keeping that edge sharp.

Today I took my camera and walked the trails I’ve cut and maintained over the years. The ponds and streams were full of fish, frogs and others, splashing as I walked by as if to say “come join us”. One section of the trail follows the stream a distance and it was simply incredible to see all the life in the water. That’s one of the great things about having ponds and stream to walk … everything in the forest comes for water, so it’s always lively. I crossed a deer run and saw those fresh little “rasinettes” as evidence that they’d recently traveled through on their way to drink.

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