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 …

Today I went for the major eye exam. It took the better part of two hours to thoroughly, and I mean thoroughly check my eyes out. All reports came back fine, as a matter of fact, even my glasses prescription hasn’t changed in the past seven years.

I had the exam done right in town (Springfield, VT) by Lane Eye Associates, and they were totally professional. I was really impressed to find a place of such high integrity right in town. I’ll definitely use them again if and when necessary.

No sign of broken pieces of plague, broken blood vessels, detached or torn retina, no nothing. Both eyes were declared in absolute perfect health … and honestly, they always have been. That’s one of the reasons this eye problem is so troubling.

The results didn’t really surprise me. I felt my eyes were in good shape before going … but I also wanted to eliminate them as a possible cause for the current situation. I solidly feel that I accomplished that today … that’s a good thing.

So where does that leave me? Well, I’m kind of back to square one in a sense.

Current plan is to redo the carotid artery scans to find out which set was actually correct and if that come back good, then there are several heart echo-grams to do, and last but not least a head/brain scan, although that seems to be a pretty remote concept at the moment.

There appears to also be the possibility of my being overly radiated, remote possibility again .. but certainly possible. Radiation exposure can cause optic nerve damage and I have had a lot of exposure in the past two years.

So, we’ll see … I may be heading back to Boston for some of these tests … only time will tell, and I don’t expect to hear a thing until Monday.

Seems like one of those ‘hurry up and wait deals’.

For those interested, I’ve put up the audio recording of my conversation/consultation with Dr. Eva M Rzucidlo here. I have also fixed the link to The History Of Proton Therapy by Ethan Cascio, done last year at MGH (sorry about that, didn’t realize the link wasn’t working).

We’re enjoying the weekend with a little R & R before heading back into the real world Monday morning. We had a lot of snow this past storm and lot’s more coming this week. Will it ever stop?
I’ve made an appointment with an eye specialist for Thursday, March 3 at eight am. for the next round of information about the eye issues and if that doesn’t give satisfactory results, I’m off for a set of head scans.

At least I feel like I have a reasonable plan moving forward … no more of this “rush, rush blindly forward” stuff. From this point on, I move at my speed, in my direction and under my control.

BTW … I will never, never ever, trust the decisions of one doctor, or one hospital … again, without getting at least one other opinion and probably two more. I am slowing finding out the best opinion is probably my own self diagnosis. You know that feeling you get deep inside when something is wrong … well, it’s almost always correct.

Today was the big day right? To find what was messing around with my vision. Well unfortunately that’s not what went down … confusion and chaos reigned and now I have two totally conflicting opinions. Not to go ballistic or political on the blog, but it’s truly no wonder our health system is so screwed up in this country.

This afternoon, around one o’clock we drove up to Dartmouth Medical Center, to the Department of Vascular Surgery for more advanced testing of my carotid arteries and to determine what should be done. If you remember yesterday’s post there were several different ways this could go, which were all acceptable to me and I was mentally and physically prepared to deal with whatever got presented as the logical way to go.

After the tests were finished, Dr. Eva M Rzucidlo met us in little consultation room, introduced herself, sat down and began by asking a bunch of general health questions, questions about the chondrosarcoma, and then proceeded to explain about the scans. As she started, I turned on my trusty digital voice recorder.

[Yes, I record all these important conversations and highly recommend you do too if the opportunity ever rises. It's amazing what you hear by listening a second and even third time. Even more amazing is what you yourself can say sometimes ... anyway, sometime tomorrow I'll put the recording in the audio section and you can listen for yourself.]

What came next was a pretty stunning statement … at least stunning to me because I was prepared to go through with whatever procedure they recommended including full blown surgery if that’s what it took to solve this and allow me to get on with my life. In general, I feel like I’ve almost lost two years dealing with this cancer … not that it’s solved or anything, but after the last trip to Boston I came out feeling like I could at least make a few plans for later down the road. I’m ready to move on. I know I have cancer, I know what I have to do to deal with it, and have learned what I need to do on a daily basis to get by. I also know that things could change at anytime … but I try to keep that as a background thought. I don’t dwell on it.

Anyways, to my surprise the doc said that my carotid arteries (both left and right sides) were just fine! I said the tests at the other hospital (Springfield, Vt.) said they were at least seventy percent blocked, and that I was in need of doing this surgery immediately … and they said it with real sense of urgency … like do it now! She looked at me and said they interpreted the scans wrong … there’s no way your arteries are blocked even half that amount.

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While I had some spare time this evening, I thought I’d write a bit more about what’s going on.

For those in tune to what’s going on … tomorrow afternoon I’m off the Dartmouth Medical Center for some more testing, and a meeting with Dr. Eva M Rzucidlo. The purpose is to determine exactly what path to follow in repairing my carotid arteries (mainly on the right side).

She has an impressive resume and I full faith that she’s a pro. If you remember a ways back, Dartmouth Medical Center is the hospital I turned down before going for proton therapy in Boston. I simply didn’t like their plan for treating my chondrosarcoma. That being said, I do believe they’ll be the best in our area for this operation.

The story begins:

Last Thursday (February 17, 2011), while at work, I experienced a really weird thing with my right eye. It literally shut off for about twenty seconds. I mean off, like you shut the lights off in the room, total darkness. The twenty seconds seemed like a long time at the time, but then as suddenly as it turned off, it turned back on! That was it for the day.

At the time, although I did think that was an odd thing to happen, I kind of brushed it off … well, not kind of … I did brush it off. There’s a logical reason for that too. There have been so many physical changes in my body this past year that I simply chalked it up to being on more thing I should mention at my next trip to Boston. At the time, it made sense … at least more sense then it does now. We all know hind-sight is always twenty-twenty.

While the sight was gone in my right eye, there was no pain, no dizziness, no head-ache, no nothing … I just couldn’t see out of it. I say this because it was an important factor in the decision of my not to saying anything at the time.

The next day Friday, I was outside talking to my friend Harry M. when it happened again … but this time it was different sort of. Instead of getting total darkness (as dark, as dark can be), my vision sort of split. The top half was pure white and the bottom half was pure black … now how strange is that? Slowly, the bottom half started to come back and within about ten seconds I could see my friend from the chest down … really. It was very odd to say the least. I could clearly see his stomach and legs … but not his shoulders and head! Literally, my vision was chopped in have just like you’d cut a photograph in half. Again, after a few minutes my vision totally cleared up and went back to normal. I mentioned to Harry that I my eyes were acting up and explained a little bit of what was going on. We went back to work. Again, the rest of the day was uneventful.

Saturday came along and while at home talking with Sher it happened again. This time although the effects were a little different, the temporary blindness lasted a tad longer. At that time I told Sher about it and we decided we’d call the doc on Monday, even though it was a holiday.

Sunday it happened again, twice in fact. Now … I was thoroughly convinced something was wrong. I’d lost vision five times in the last few days. I started thinking about what might happen if it occurred while I was driving, or doing something like cutting stuff up for dinner. You know how thoughts race through your mind when something weird is going on … well this ranked as weirdness to me.

I started thinking back to try and remember any other times this may have happened, but couldn’t think of a thing. There were other strange visuals too. Once I experienced total darkness with just a pinhole of light coming through … like looking through a pin hole in a piece of paper. All darkness except for the pinhole which I could see through. Another time my vision turned totally dark purple! Yes, very weird.

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