Chondrosarcoma – ah shit, bob's sick

Wednesday, April 23 is the day for the next set of tests to see what’s going on with the eye situation. There have been no more instances since this first began … which I’m feeling good about, personally.

This common test is called a echocardiogram. Basically, it’s Doppler ultra sound imaging of the heart and surrounding vascular region. Yep, Doppler … like Doppler radar we see used for bringing us the weather report!

It checks for pumping capacity, patterns of blood flow and can detect things like coronary artery disease and hypertrophic cardiomyopathy. Sound kind of scary? … it’s really not. It’s totally non-invasive, doesn’t enter any body cavities, and has no known risks or side effects.

All this is a continuation, in the discovery of what was going on with my eyes … those little bouts of temporary blindness that actually were scary, but have not returned since.

These tests are being done at our local Springfield Hospital, why I’m going back there I’ll never know … but I will say that it’ll be the last time I ever step foot in there, if this test is screwed up in any fashion. I have really lost faith in any of these smaller hospitals in our area, after this last round of confusion. After this, it’s back to Boston if need be.

Besides this event, I’ve really been feeling pretty darn well considering. Maybe it’s because the cold wintry weather has slightly warmed and signs of Spring are beginning to show … even my energy level seems to be on the rise a bit.

Work has been very busy, and I feel like I’m finally having the energy to make it through a full day and more … which is really exciting to me. It’s going on two years since all this began and I’m ready to move forward … I still have a lot of things I want to do!

There’s so much going on in the world that I want to stay on top of, and be involved in, write about, talk about. Japan (tsunami, earthquakes, radiation), Libya (the entire middle east for that matter) war, (can you believe we’re into yet another war? Geez, we’ve been in one war or another ever since I was born … and that’s almost sixty years!), the economy, budget cuts … you name it, it’s happening. But we’ll leave all that stuff for another time and another website. Let’s concentrate on feeling better and getting back into reasonably shape so I can tackle some of those topics that bother me so.

Hopefully tomorrow, I’ll hear some results from these tests, although I could see it taking a few days. I’d rather it take a few days and get a reasonably thought out reply, rather than an instant, confusing, incomprehensible bunch of jumble that they themselves can’t explain or clarify … I’m not in a hurry.

Till we meet again …

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.

Click Image For a Larger View

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.

Read more…

Date: Thursday, January 21, 2010

Location: Cox Cancer Center – MGH – Boston MA.

Start Time: 8:30 AM – Finish Time: 3:30 PM

CT Scan: 8:30 AM

PET Scan: 10:30 AM

Dr. Delaney: 2:30 PM

Note:

This will be the first, in a series of visits to Cox Cancer Center, in which comparison scans are to be done. To arrive at 8:30 am, I’ll need to leave about Springfield, VT about 5:am.

No food or drink is allowed which means I have to make this particular drive without the welcome effects of coffee. Somehow, it doesn’t sound like a fun experience … especially if the weather is poor for driving.

Date: Tuesday, December 15, 2009

Location: Bellows Falls Medical Center: Bellows Falls, Vermont.

Start Time: 4:00 PM – Finish Time: 4:45 PM

Dr. Gary Clay: 4:00 PM

Note:

This is a visit to my general family doctor, for a basic discussion on what happened (an update) during proton treatment, the discussion pain relief, caring for the burns, and a few other small details.

Tomorrow is the Boston Proton Planning Session.
I drive to Boston.
I get scanned.
They take their measurements.
Make their plan.
And I return in two weeks to start the process.

It’s so crazy the way this is all done … just totally amazing. With the protons (which are positively charged Hydrogen atoms) they plan on changing or altering the DNA structure of the tumor while inside me. The idea behind it, is that the tumor will not be able to repair it’s own DNA, and therefore, stop reproducing more cancerous cells, and hence, stop growing any larger.

Unfortunately, this will not alter anything that’s already been damaged. By this I mean, the function of my legs, pain, etc. etc., should all remain the same … however, I won’t get any worse either, and that will be more then satisfactory with me . So, the way I am, is the way I’ll be.

In reality, ten years ago, I would have already “bought the ranch” sort of speak. So anytime from this point on … is bonus time. They sent people like me home with a giant jar of morphine and syringes and told them that’s all they could do. So already I feel lucky. Every single day that passes, is another day I’ve won … and honestly, that’s all that matters.

Time expectations? … well, who cares? I ask. I’m already ahead of the game, so every day’s a winner for me.

Health wise? pains? … yep, both are a problem at the moment, but nothing I can’t live through. If they can halt the cancer in it’s tracks … then managing the pains and my basic health should be OK.

Please keep in mind, that this is not a cure-all. There is no cure for this Chondrosarcoma. What this is, is a trade off … for more time, if it all works.

Think positive, keep smiling and laughing (I am) and with a little luck, all this will be worth it in the end.

If I’m back from Boston early enough … I’ll try and make a post.