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 …

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!

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.

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.

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.

I tested my new laptop for remote access capabilities so that I can keep my websites updated, and continue to work, while in Boston. All tests turned out fine, and now it’s a matter of having living quarters with high-speed access.

It’s now time to begin securing Boston living quarters. Monday thru Friday from Oct 7 to Dec 20. Hopefully this won’t be a huge hassle. The plan is to find out what BC/BS will cover and then add the rest myself. With a little luck, it won’t be too expensive to survive in Boston and still have some comforts of home. Of course the first challenge will be finding out if BC/BS has an actual per diem allowance.

A special thanks to all who have been emailing and writing. Howard C., William B., Joshua F., Rose M., Bill N., Sara S,. Louise P., Colleen O,. Jim A,. Ray L,. Lysz S,. David J,. Sandy D,. and all the others that have been sending well wishes. I really appreciate it and it helps keep my spirits up. I love hearing from you all!

I also want to thank Howard C. for suggesting that I setup a recovery website and name it BackFromHellBobsWell.com … excellent humor! William B. made some suggestions for the use of my cane in this statement – “The nice thing about canes is that they are also excellent for beating your servants, children, and pets whenever they show insufficient respect or obedience”. Thank you guys! … there are times I re-read these emails and laugh my ass off. Both Sher and I enjoy this stuff. There really is some comedy in cancer.

Proton Power – We sold a ton of the T-Shirts that weren’t for sale!

I set up a new links category entitled “Friends of Scifillian”. They are some of the companys that are on our servers. I have more to add and will do so this coming week.

More to come …

This evening I sent my email off to Doc Delaney asking him to help arrange the proton therapy sessions (see photo below), that hopefully I’ll be taking soon. I’m excited about this and I have a lot of people to thank for helping me along the path I’ve chosen.

I’m more confident then ever that I’ve made the right choice for me and those around me. Whatever the results are … I’ve made the right choice for this part of the journey

As soon as I hear back from the Doc, if the news is “it’s a go”, I’ll start searching for temporary living quarters somewhere close to MGH in Boston. Eight and a half weeks will be a long time from home, but hopefully this will give me even more time later on.

This was one of the harder decisions I’ve had to make along way. I should say we’ve (Sher and I) made along the way. It involved so many complex pieces of information and emotional drainage that it took the 2 of us (in a sense) to make it. In the end of course, it was my decision … no one else can really do that for you, but we are both comfortable with it.

So I raise my glass of mushroom tea and “toast” the decision! It’s done. Final.

Now we wait and see if the insurance company is going to cover the cost of the therapy (pre-approval). If they just cover “that” I’ll be thankful.

The rest of my day today went pretty well. I was feeling much better, at least ½ full of energy and didn’t even take a nap when I got home from work! Fantastic … that’s more like it.

I received a lot of emails today. Some from folks I know, and some from folks that simply bumped into the blog. I thank you all for your kind words and support. Sher and I both, are very appreciative. You know, it hasn’t been easy on her either. She’s been covering many of my responsibilities as well as helping with phone calls, appointments, bringing Al to school … the whole gambit.

Alberic reported his first day back to school went fine … that’s music to my ears! I was concerned how he may handle all this and school starting, but it seems he’s done fine. Kids are amazing sometimes.

Doc and his assistant give me some last minute instructions to relax.

Doc makes some final adjustments to the proton beam.

Doc flips the switch!

Today at 10:20 am, I’m meeting with Dr. Sohail Mirza the Head surgeon. I assume this is to go over the surgical procedures and to attain a clear understanding of what’s going to happen. All week I’ve had these meeting with the group of surgeons that are going to work on me.

Individually, they have all explained (in detail) their part of the surgery and the expected outcome of their individual work. Basically … they’re telling what and what not will be functioning on me when I get finished with this series of surgeries …. and me tell you, that list gets longer and longer with each surgeon I speak with. Quality of life, seems to be dropping with each appointment I keep.

Until this point in time, I feel like I’ve had no  other realistic choice (what I consider realistic is something that can actually cure or at least stop this cancer). So, I have to go along with whatever they say … or die. The initial “call” was that I had about 8 weeks to live … and about 6 of those are gone now!

A few days ago, on August 23,  I wrote to Dr. Thomas Delaney in Boston, MA.  A simple email, that asked if he were willing to take a look at my case and determine if I were a candidate for proton therapy, which I discovered was a possible because of this blog.

Sher had also made several calls to Dr. Delaneys office but we hadn’t heard back … so I figured, OK … I’ll go with the surgery. We also recieved (yesterday) an itinerary from the hospital with the last few appointments and a date for being admitted, and a surgery date. I prepared mentally for the surgery

But after dinner last evening, I really gave up with any hopes of Boston contacting me. I said to myself,  ”well, I tried … I guess I just wasn’t a candidate for the program or it just wasn’t in the cards for me”. What little appetite I had had, was gone.

What the heck I thought, tomorrow I meet again for final consultations and away I go. I don’t really feel like any of this has been in my control, all decisions seem to have been made for me, and no options have been offered … I did what I could … right?

Well, I got up from the table and was about to call my son in FL, when I glanced over at my email … and there it was! Return email from Dr. Delaney in Boston asking if I could quickly get a copy of all scans and records of my case and bring it down to his office in Boston!  Wow … another possible option.

We had a lot of visitors last night. One, was my friend Harry M., he put a new sound card in Sher’s pc so that she could Skype with others around the country. I tried to put it in the other day at 5 am but became frustrated and hadn’t had time to try it again … thanks Harry, Sher needed that. Also, 3 folks for our Peace and Justice group stopped by for a quick “how ya doin” conversation, and then a visit from Peter D. …. which I never expected but am so happy that he came. I’ll tell you more about Peter as the days go on … he is one hell of a 75 year old.

OK … so where are we today:

On my way to Dartmouth for 2 reasons: 1 is to keep my appointment with Dr. Sohail Mirza and get the final info before surgery and 2. to put up a copy of all my scans and bring them to Boston. So that I may prevent getting this surgery. Yep, you read that correctly … they are 2 conflicting things.

If there is anyway on the planet that I can avoid this surgery … I’m going to … and Dr. Tom Delany in Boston is willing to look at me and determine if there is another option (proton theray), and if there is … that is where I’m going.

Yes, I know … I have to cancel this giant surgical thing they’ve set up at Dartmouth (at least for a week). I know, I’m going to have one pissed off hospital and a bunch of pissed off Drs … but what the hell, it’s my life, my choice, my chances and risks …. and I’m going for it.

More to blog tonight …. I gotta get ready to go.

6:45 am Angio/Vir Workup
7:30 am Angio/Vir 4
9:30 am Angio/Vir Recovery

2# Consultation with Dr. Sohail Mirza
10:20 am – 12:00 – noon