I remember spring actually being a season, like when I was a kid. Where it lasted for five or six weeks, flowers bloomed, and grasses went from winter browns to a lovely spring green and oh yes, those beautiful, gentle spring rains … but no more. Times are a changin’ … and it’s a damn good thing there’s no global warming … can you imagine?!

I’ve been feeling reasonably well, you know the routine, good days and bad days and that’s to be expected. I do find the hot weather equally as bothersome as the extreme cold of winter. It tends to drain my energy at an uncontrollable rate … it’s difficult to explain. Draining might be the word, but then again … just the simple act of getting older, is draining in itself.

Dealing with cancer on a day to day basis does have it’s challenges, and just like everyday life, we have to rise above them and push forward and onward. No different then anyone or anything else that you wish to move above.

This past weekend, to my total surprise, I heard Alberic playing a tune on his guitar that I hadn’t practiced with him or taught him. I listened, and recognized the melody but couldn’t bring the name of the song to mind. He saw me listening and asked if I knew the tune. I replied yes, but that I couldn’t remember the name. He played several riffs again, I listened again.

You know how it is when you know what something is, and just can’t remember exactly what it is you knew. Yet another sign of getting older? … gee, could it be?

After listening again I finally asked what the name of the song was. My twelve year old Alberic casually replied “it’s ‘The Drunken Sailor’ Dad, ever hear it?”. At first I thought to myself “why the hell is a twelve year old playing songs about drunken sailors” … and then I started to think about the tunes I played when I was learning to play and realized that it (The Drunken Sailor) wasn’t really that bad. I played lot’s of old crazy songs when I was young, and to be honest … I still do!

The Drunken Sailor is a traditional sea shanty … a folk song, and like most old folks songs there are dozens, if not hundreds of verses. I mean that’s what makes it a folk song … folks adding their own lyrics and passing it down. Hey, someday I’ll write about folk songs … it’s a great topic.

I smiled and acknowledged his skill at playing it, asked him to show me the chord structure … in which he immediately got up and walked over to the keyboard (even though he was playing guitar), and proceeded to explain the chords and structure to the song.

Then we sang a few verses:
Chorus:
What’ll we do with a drunken sailor,
What’ll we do with a drunken sailor,
What’ll we do with a drunken sailor,
Earl-aye in the morning?

Put him in the long boat till he’s sober,
Put him in the long boat till he’s sober,
Put him in the long boat till he’s sober,
Earl-aye in the morning?

Shave his belly with a rusty razor,
Shave his belly with a rusty razor,
Shave his belly with a rusty razor,
Earl-aye in the morning?

Put him in bed with the captain’s daughter,
Put him in bed with the captain’s daughter,
Put him in bed with the captain’s daughter,
Earl-aye in the morning?

Hmmm … I think he’s getting a real handle on this music stuff … amazing how fast kids can learn. Keyboard, drums and guitars, our house is starting to look like a music store! …. but you know, that’s just fine with me

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’.

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.

At first, there was a sense of relief, and then a sense of “what the hell is going on here?”. Someone is either not telling me the truth, making a serious mistake or, I’m going crazy … and the last time I checked … I wasn’t crazy. She went on to explain other options like seeing another eye specialist to check for detached retina issues, brain scans (for possible brain tumors pushing against the optic nerve) … but was very clear that my arteries were not dangerously clogged.
In the end, I asked her to recommend an eye specialist for a start and if nothing showed up there, I’d go for the full head scans (which I’ve been trying to avoid because of so much accumulated radiation built up in me from the proton and all the scans over the past year).

We left. We left partly frustrated, part angry, part confused and really pissed off. After spending the better part of the day there, we left with less information then we had when we’d arrived. It sort of put me back to ‘square one’ after spending almost a whole week (and taking days off from work) to find out both places were barking up the wrong tree.

Meanwhile, I’m still having vision issues and I don’t know any more then when I walked in.

Now what? To be honest, I’ve lost faith in both hospitals. I have no way of knowing which is really making an incorrect diagnosis. Do I go for a third opinion?

Unfortunately, this isn’t over yet. My current regiment is to take a few aspirin a day (stroke prevention) and ride out the vision stuff until I get a solid, confident sounding answer from someone. Maybe it’s back to Boston. I’m frustrated and angry at spending a week on this and still I have no clue as to what’s causing the problems.

I’ll put up the audio tomorrow so you hear it for yourself … it’s been a long day, my neck hurts from all the pushing and shoving, my back hurts from lying flat on those tables, it’s near midnight and I’m really bummed with the results. What a waste of a week … more to come.

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.

Monday, I went to see my primary care and told him about it. He checked my eyes with a large loupe for anything logically wrong but didn’t see anything. Knowing my history with cancer and tumors, his first thought was a possible brain tumor, but that we needed to clarify that thought with an eye specialist.

He left the room and started to make some calls. Sher was with him, and the phone got passed back and forth a few times between the eye specialist, Sher, and Doc … and finally was decided upon that I should have my carotid artery checked before anything.

The carotid artery is the big veins that run up the sides of your neck. They carry the blood to your brain … so yes, they’re incredibly important to supplying your brain with fresh blood. Without a clear blood flow, havoc can break out, there can be all sorts effects from slurred speech to blindness to all kind of numb feelings … basically, lack of blood to your brain is a stroke or mini-stroke … a very serious warning.

Now, I’ve been through a lot lately fighting the Chondrosarcoma and honestly not much has really frightened me up until this point. Cancer (at least my kind) doesn’t make you stupid or lose your mind … it’s a physical thing, and I always thought I could deal with any physical arrangement it could throw at me. Not that I wanted it, but that I could live full time in a wheelchair if I had too. I always thought, that as long as I could think clearly, I could make some kind of a living. Whether it was computer programming or sitting on the corner with a tin-can and my guitar … I could do something. With the cancer, whatever physical ailments I ended up with, I’d deal with it.

But your brain is a different thing. At least for me it is. I get shivers down my spine just thinking about being stuck in a mind and body that couldn’t communicate with the outside world. It’s a frightening thought and something I would not want to deal with.

I say all this because I want you to be aware of these things. Don’t blow off symptoms you’re not sure about. It only takes a few hours to visit a doctor … and the results of not visiting one can last a lifetime …. so go. I know for a lot of men, it’s a hard thing to do … you know, admit that you don’t know everything about everything. You know your body, and deep inside you usually know when something isn’t right, so don’t wait weeks and months to do something …. do it now.

Back on track. Now it’s Wednesday evening and tomorrow morning I go for a few tests to determine where we go from here. There are several directions that can be taken. One is a simple prescription for blood thinners, another is having a stent put in, and yet another is a surgical procedure that replaces the veins in your neck with one from somewhere else in your body (usually from the legs).

Hopefully, by this time tomorrow I’ll have answer, and maybe even checked into the hospital … we’ll see.

But as for you … I highly suggest you don’t fool around and wait if you experience anything like this. From what I understand and what I’ve read, I’m really lucky to get these little strokes as a warning sign that something was wrong. Not everyone is so lucky. Many simply stroke out and it’s too late or it’s a hell of a lot of work and rehab to get back to where you were.

More tomorrow.

… and NO, I’m not eating anymore cheeseburgers.

So that sort of leaves me hanging. Even after tomorrow’s tests, it could be days before an actual admission.

I guess I’ll head off to work for a few days and see what happens.

This all started about a week ago when I started losing vision in my right eye. A few times a day I’d totally lose vision for about five minutes at a time, and then it’d return. These are what they call mini-strokes, and what caused the sense of urgency.

More to come …. lot’s more. I’m off to work for the day!

Well, to make a long story short … I went off to see my primary care doctor Monday to ask about it. Once again my doc ordered the right tests for me and by the end of the day I knew I was in for a big one. Yep, tomorrow morning (Feb. 23, 2011) I go in for at least carotid artery surgery and who’s knows … could be a major bypass situation.

Gee whiz … and I thought things were just beginning to calm down a bit from the chondrosarcoma. Here we go again… nothing like a little excitement in life.

Hey, over the next few days … you can call or email Sher and help calm her down .

If all goes well …. I’ll see you all in a few days.

To learn more, Google carotid artery surgery … you’ll get the drift!

BTW … I ordering a whole new body from Amazon as soon as I get back from Dartmouth. This stuff is starting to get old .

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!

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.

Anyway, between work, art, raising children there is also the whole family thing, and the ability to provide all the things it needs to thrive … that’s a whole other venture in itself that requires lot’s of energy. Maintaining a home, food, clothes, etc etc., all part of maintaining life.

Of course many of us, do this almost mindlessly. You might say, ‘Ah, come on Bob, everybody does that stuff everyday … and then some’ … and I’d have to agree with you. I always did, and still had time left to do more …. lot’s more.

But with the onslaught of cancer, I’ve had to make serious concessions as to which things were most important, and which I could let go off, and still feel like I was accomplishing what was needed to support and even grow my family. I have to assume that all cancer patients go through a similar situation, in fact, how could you not re-evaluate life’s purposes? I think it’d be a good thing to do now and then even without cancer. But your health forces that situation and all that goes along with it.

So how did I find time to write today? Well, tomorrow we’re off to see the wizard in Boston again. My last two visits have been thwarted by winters weather and it’s now time that I HAVE to go … no excuses.

You see, through-out all this time, the last year and half, I’ve never gotten a clear, solid answer on whether or not all this work that’s been done on me, has done any good. Now I can tell you, that the advancement of the cancer has certainly been hampered … even if the Doc can’t prove it in his tests yet, I can feel it in my body. What we don’t know and understand is that even though we’ve fought back with protons, chemicals and spirit (yes, I consider spirit one of the more powerful drugs), just how successful we’ve been. This is what we’re looking for now.

In layman’s terms … it’s minuscule traces of living, replicating cancer cells within the tumor, or anywhere for that matter. These cancer cells leave a trail of, traces of sugars, (if you were explaining this to a child you might say ‘it’s their poop’) as they move from place to another within the tumor, or if they decide to take up residence elsewhere in your system. These are the first stages to be seen if cancer is still active in your body.

In my case, it’s a little different though. Normally, this tumor would have been cut out, surgically removed, and then radiation treatment (and maybe chemo), around the surrounding area, would have assured (hopefully), that all the cells were killed. But because the nerve bundles, arteries and what-not that run down your spinal column became entwined in the tumor, conventional surgery would left me in tough shape.

However, with me the tumor was left in … and because of that, the risk of return could be higher … maybe. No one knows, and there is no historical data to go by. So we have to watch. The weird part is, that since the tumor still in me, there are millions of living cancer cells still floating around my system … what the proton therapy hopefully accomplished was that these cells are (hopefully) unable to replicate … and that is what they’re looking for.

Kind of simple, kind of complex …. but very difficult to judge or declare a success without a constant level of surveillance. It’s why I never get a ‘real’ answer.

I ran a gamble by prolonging these visits (which wasn’t entirely my fault), but now it’s time to see the wizard and check out what’s going on.

So, I took most the day off (worked a little this morning), and prepared (emptied out) my system, and mind, for tomorrows visit, and will leave about five in the morning to make the drive. This also allowed me time to write this post!

So while I won’t return with a definitive answer tomorrow, I will be able to re-sign my lease for another renewal of time, and adjust things accordingly.

Besides, I have a lot of personal things I want to finish or do yet: a list in no particular order.

The Faces of Cancer: (photo essay, not quite finished)

What’s Going on in Egypt and the Rest of the Middle East: (article)

How and Why to Grow Medical Marijuana: Best Medicines Made At Home. (almost finished pdf)

The Medical Garden: (almost finished), software for growing medical marijuana.

More Starships and Related Items: 3D renderings (with Alberic)

Why Ronald Regan Wasn’t a Great President: (article)

The Truth About Sex and Chondrosarcoma:

…. and the list goes on and on.

BTW … last week a friend (Harry M.)and I were having lunch in White River Junction, Vermont and in walked Governor Peter Schumlin, our new Governor of Vermont. At the time I was so surprised that I neglected to ask him about the advancement of Vermont’s Medical Marijuana laws and how impossible they are for most people to follow. Not in the sense of complication (they’re very simple and clear), but more about how the state is neglecting to supply more information about how folks that need to use it, can either purchase, grow or acquire it. Which is the reason behind my writing a PDF instructional pamphlet and matching software. Maybe next time … or maybe I’ll write him.

My goodness … so much to do, no time to be not feeling well … We’re Off To See The Wizard!

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.

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.