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’.

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.

In general,  I don’t watch much television besides the news and that’s  not for more than ten minutes a day or until I get pissed off by political bullshit or the repetition of three or four news stories that the prime new stations insist on repeating over and over and over until you begin to believe that it’s important. Why they do that I’ll never understand, there’s so much happening in the world that could be reported on.

Actually, I hate to even get started on this topic because I really feel like our “news (if you can still call it that), is so heavily censored that I might as well be watching Sponge Bob. Not censored in the sense of the conspiracy minded, or our government (although that’s certainly possible), but censored by the news programs and stations themselves simply by covering so few items a day, and by injecting so much opinion.

Yeah, I know, … I was talking about NetFlix … let’s leave “news broadcasting” for another discussion before I get really carried away. Besides, the telly is often on in our house. Our pets (cats and dog) seem to be attracted to it, and certainly Alberic enjoys his occasional show and video games, and Sher watches a few Soap Operas …

NetFlix seems to be offering a pretty good deal if you’re a watcher, or even if you just occasionally watch something.

There are several different levels of accounts to choose from. The main difference between them is the number of DVD’s you can get mailed to your house each month. There’s no time limit to how long you can hold on to the DVD, but as soon as you return it (pre-paid mailer included), your next choice on the list is on the way.

The accounts work in two ways:

1.) You can keep a running list of DVD’s to be mailed to you.

2.)You can simply stream the movie over the internet to your computer or TV.

You get access to both.

It pretty darn simple to do (you don’t need to be a computer geek) and their website is very easy to use. As for variety of things to watch … it’s almost endless.  The genres are extensive … even the Foreign Film and Classic categories are packed with lot’s of choices.

So, next time you feel like watching a movie or some television show without commercial interuption (although you can always hit the pause button while you make the popcorn), try it out. Great if you have kids too!

I do wonder though … will there ever be advertising added? For those of you who remember the history of television goes like this.

At first we had simple broadcast television, they sold advertising to make money and stay in business … that makes sense … right?

Then along came Cable TV, their big initial selling point was that there would be no advertising because if you paid for the service, that fee would be enough to keep them going and growing. Not sure how long that lasted but it wasn’t very long.

Cable TV has now degraded to the point that it’s worse (for the viewer), then it’s predecessor … the very thing it was originally trying to conquer. Nothing but the very lowest budget reality shows, info-mercials, and News stations that get most their news from websites … they barely have reporters any longer … and paid staff that provides research.

Basically, if it weren’t for the internet connection … I wouldn’t even have it, and that’s barely an acceptable speed when you compare it to most of the other technically advanced countries in the  world. We’re on the bottom rung of the ladder … and, we pay way too much.

Now, along comes Streaming TV and Movies doing the same thing … no commercial interruption, dirt cheap, and oh, so convenient … but for how long?

Take advantage of it while you can … I’m sure it’ll change.  After-all NFLX is on the Exchange and it’s investors will be demanding higher and higher profits, pushing the company to make more and more dollars  … and so the cycle continues.  

Hmmm … frustrating isn’t it? It seems to all boil down to bandwidth issues and how our government (meaning our tax dollars) has already paid for most the infrastructure, yet big business continues to profit from it and in a massive way!

Think about what you pay monthly for access to bandwidth, of one sort or another. Cable TV, your cell phone, your smart phone,  maybe you’re like me and have a GPS service … go ahead, add it up … tell me it’s not expensive … and tell me you can live, work and survive without it. That’s getting harder and harder to do too.

Gee … where have I heard all this before?

Hey, in the meantime … make some popcorn and give NetFlix a “go”, it’s a lot of fun and it’ll help keep your mind off of politics and world  issues …  and enjoy the show, I’m watching Doctor Who tonight!

I ran down to our local butcher shop and bought two boneless pork chops, stopped at the farm stand and grabbed some wonderfully fresh picked sweet corn. That is one thing I have to say about Vermont, during the season when fresh corn is available, Vermont has some of the best sweetest corn money can buy.

I picked up a few more things and made my way back to the house.

Prep in the afternoon: Now this may sound like a complex recipe but actually it’s rather simple and doesn’t require much time to prepare and almost no time to cook. Of course that’s one of the great things about most Asian cooking styles, they cook quickly … which in turn, if your food is fresh and healthy, you end up with a fresh, delicious, healthy meal with limited effort.
So prior to cooking anything, I took the time to prepare all the veggies for stir-frying. The prep, is key for this type of cooking.

First thing I did was to put a pot of water on the stove for cooking the noodles, basically blanching them ahead of time and then finishing them in the stir-fry at the last minute. After blanching them, I cooled them off, mixed in a little oil so they didn’t stick and put them in the refrigerator for later. I simply wanted to have them ready to go.

Then I cut all the veggies (except the bok choy) a little larger then match stick size and placed them in a bowl and placed them back in the refrigerator. The bok choy I cut into larger pieces, similar to those in a Chinese restaurant and put them in cold water, back in the frig to crisp up prior to cooking.

As for amounts, I was only cooking for Sher and I, and we have a lot of ingredients so I used only a little of each item. Besides, I never measure anything. Good food, is good food and if you use the freshest ingredients you can … your dish will be great!

Next I peeled the sweet corn and prepared it for cooking too. My plan was to have a big pot of boiling water ready to go when I started the stir fry, so I only had to drop the corn in at the last moment. The corn (actually all this stuff) was grown by a local farmer that’s right down the block from us. Well, not the bok choy …. but everything else. A friend stopped by with some fresh garden yellow squash and zucchini so I decided to add a little bit of that too.

Then I prepped the meat for cooking. I took two boneless pork chops and trimmed all the fat from them. Sliced the meat in small match stick like shapes, added the paper thin slices of garlic, good shake of celery seed (you know that stuff you never know what to do with) and covered it with some Szechuan stir fry sauce and placed it too in the frig to marinate.

Now my prep was ready. My guess is that it took about twenty minutes to do this. I had all my ingredients ready to go including the blanched noodles (I used flat Lo mein style), aqll the veggies cut up, marinated meat, and the corn was ready to cook.

The idea of this dish was to have a lightly spicy stir-fry with steamed sweet corn on the side.
Now let’s talk about the cooking method. Like all stir-frys there are two methods that can be used. One is Chao and one is Bao. The difference is all about the temperature and the speed in which the food is cooked. For this dish I’m using the Bao method … which is an extremely hot pan (yep, smoking oil), and very fast cookery. You can probably google those terms and get specific differences … but that’s gist of it.

To start I put the corn in the boiling water and let it start to cook.
With the pan very hot (pre-heated), I used a roundo (french saute pan, but a wok or any pan that can handle high heat will do), a good amount of wok oil in it, I added the red and green peppers, onions, yellow squash and zucchini. I let them acquire a light brownness on the edges (about one minute), gave them a stir and removed them to a side dish. With the pan empty again I added the marinated meat … same process (on a side dish), then I added the bok choy and let that cook a minute.

At this point I added the meat and veggies back to the pan and a good handful of the pre-cooked noodles. A good splash of the szechuan sauce, tossed it with a fork to mix it and removed it from the heat. The whole cooking process was less than five minutes.
The spicy-ness of the szechuan sauce and the sweetness of fresh corn are perfect together. Even though we served the corn as a side dish. Could’ve cut it off the cob and added it … but it was some of the first fresh corn of the season and deserved to be enjoyed with all it’s natural sweetness by itself. Almost sweet enough for a dessert.

Yeah, I know, I should be spending my time working and taking care of clients and business … but sometimes it’s nice just to take a break and do something different. Besides, what else would I be doing on a Saturday night?

Ingredient List:
2 boneless pork chops (or chicken, shrimp, beef … whatever)
Bok Choy (washed, sliced and put in a bowl of ice cold water and refrigerated)
Yellow Squash (slightly larger than match stick size)
Zucchini (same size)
Red Pepper (same size)
Green Pepper (same size)
Onion (match stick size)
garlic (sliced paper thin

Flat Lo Mein Noodles
Fresh Sweet Corn – simply steamed

The finished dish! Enjoy the weekend!

The first test was a complex MRI (one of my personal favorites) that involved setting up an IV with mix of several solutions for reading levels of activity in the tumor region of my spine. It’s a long test, about thirty-five to forty minutes and they do several passes. First pass is to get an accurate measurement of the tumor itself … like actually measuring with ruler, height, width, depth.

Then they inject you with a contrast so that blood movement (or non-movement) can be measured accurately. The next injection is to see the amount of oxygen that the tumor is (or is not)consuming, then one for the amount of blood sugars that the tumor may be consuming.
During all these scans … and I mean the entire time, you can’t move a muscle or the process basically has to start over. It’s important because when the Doc reads these scans they have to line up with older scans, and with each other. This is the reason they tattoo’d me in the beginning … so that alignment can always be reproduced. Any movement does two things. One is of course it makes it almost impossible to line up with other scans and secondly, the images blur when you move.

So if you want to get out of that tiny little tube … you’d best be still. It’s a tough one because it’s kind of like laying down in an empty toilet paper roll made out of metal! It’s tight (not for claustrophobics), very noisy, and there seems to be an inherent lack of air movement. Not a comfy situation. Oops, and can’t fall asleep either (although I’m not sure anyone actually could because of the noise). People tend to move in their sleep and again, that’s not a good thing in this situation.

My guess is that I spent about an hour and a half to two hours … not fun.
The next thing was to get a series of chest x-rays and a few other what seemed to be random bone and joint pictures. The purpose of these is to check and see if there has been any cancerous metastasis. Basically, they’re looking for cancer they may have spread or took up residence somewhere else in my body. The most common spots for this to occur is in the lungs, chest (especially the rib cage), and joints. In chondrosarcoma, the joints are important areas to keep an eye on.

By the time I was finished with that I was ready for some fresh air. We took a walk outside for a few minutes and looked at the new building MGH is almost finished with. When it’s finished it’ll house most of the equipment I’ve been talking about since the beginning of the blog with the exception of the actual proton machine which requires the better part of a building on it’s own.

We went back in to talk with Doc Delany and get the scoop on the results of the days testing. That’s one thing they have done really slick, by the time your scans and x-rays are done, the doctor has received, and examined them, and has had the time to study and compare results. MGH has a huge file on me by now (yeah, it’s impressive, four big, stuff to the gills three rings binders and a half of shelf of DVD’s of every scan they’ve ever done of me.

He came to see me almost immediately ,which was great because after a few hours of this stuff I was beginning to wear down. I don’t like getting poked and prodded to begin with (well who does ?), but afterwards I’m always ready to bolt out there. Honestly, had I not promised to see this through the entire process, with Doc Delaney, I probably would’ve left the building right then and there.

Doc had positive, and not so positive things to say. For one, the measurements of the tumor show that it hasn’t grown any … that’s a good thing. We don’t want to see growth. On the other hand, it hasn’t shrunk like tumors traditionally do. Now that’s partially because it’s bone cancer and shrinkage is limited, but a little bit would’ve been nice to see. The key to it shrinking a little is that with each tiny amount it might have shrunk, the possibility of returning function would have increased.

Now I can tell that leg movement, nerve and muscle function has not gotten any better over the last six months … as well as I can say that it hasn’t worsened either. So it’s kind of a wash out there. No better, no worse. In case, this is a winning situation. I didn’t really expect to get much better … my expectation was to prevent it from getting worse. So I’m pretty comfortable with this report.

All the x-rays came back clean … this is really good (best news of the trip). My problem here is ( and I was well warned before excepting this route in the beginning), that if the cancer pops up somewhere new, there can be no more radiation treatment for me. They don’t even like doing x-rays and MRI’s on me because my system is pretty much saturated already. Next time, it’s surgery at best. So this is a really good thing that nothing new is rearing up and attacking other bones at the moment.

The blood and oxygen intake of the tumor was not quite as cut and dry as we all would’ve liked. While the tumor has not entirely stopped absorbing these two things from my blood stream, it had greatly reduced its intake by ninety-five percent. Good and bad you might say.
It means the tumor is not entirely dead yet (in the beginning they told me this could take up to a year and it’s only been about seven months), but it’s obviously been heavily damaged and expected to continue going down till it reaches zero. That would be nice too.

Put all this in a nutshell … it’s looking pretty good. While the possibility of gaining back any lost function is becoming more and more unlikely, the possibility of “knocking off” the tumor is pretty darn good. To me, that’s a more then fair trade. It’s my belief, we’ve done pretty well for the time being. Doc seemed pretty satisfied too.

I was hoping not to return for a full year before being tested again, but Doc says that we shouldn’t and can’t wait that long yet … so current plan is to return once again in five or six months and do it again.

In the meantime, life remains about the same. Without shrinkage of the tumor, the pain management situation remains the same. Without being a hundred percent sure the tumor is dead, the uneasiness of the future remains about the same. But knowing that there has been no spread or new spots to deal with makes me feel a little more comfortable about the next year or so.

We’re all pretty much accustomed to the standard  type of chair that you see in hospitals, or the usual type you rent for short term immobility, and it seems most people accept those chairs as good, some even say they’re great.  While you’re pushing old grammy down the nice polished smooth floors of a hospital, it’s hard to imagine needing anything more in a chair. It rolls, transports the user or patient to where-ever they’re going and that’s it primary purpose.  What else could you need or want?

This past January (or about January) a friend had lent me this type of chair to use until I could get my own. Our insurance company requested a prescription from my doctor (which is standard fare), and that they would pay for the chair, minus twenty percent. Well, that sounded like a good and fair deal to me.

So, I thought I’d try using the borrowed chair for some tasks whether or not I actually needed it at the moment , just in order to try and get accustomed to using it. I can still get around a bit on my legs, and as I’ve mentioned many times in this blog, most daily chores I can handle without any assistance.  What I was looking for was experience and to learn about it.  Someday, the doctors say, that’s where I’m going to end up full time  …  so why not get ready?  Even now, I can’t take the dog for walk, can’t walk around the stores, etc,  etc.  Short distances, I can do, and without any problem. About one-quarter city block is the maximum I can go, and it’s really amazing how much of our lives that covers.  But there are still times when you want, or have, to travel further.

After walking a bit, my legs tend to go numb and the feeling just drains right out of them. This makes it impossible to walk of course, and then I have to sit and wait until the feeling comes back and I can feel my  feet again … and then I’m fine and can continue on. What that means on a daily basis is that it can take me an hour to walk a block …. and that’s where the need for a chair comes in. Once my legs are tired, it can take the remainder of the day to really fully recover.

Once your legs are tired, you have to sit down … I have to … no matter where I am or what’s going on around me. Sitting on the ground is next to impossible because once I’m down … it’s really hard to get up. It’s a kind of messy situation and it requires is knowing your limits and preparing for it.

Anyway, as an experiment, I got in the borrowed chair and tried to get the “feel” for what it’d be like. Actually, I’d recommend this practice to anyone. Spend an entire day in a wheelchair and see how much of the daily things you do, still seem like simple tasks.  See what your arms feel like. Heck, you don’t even need to spend the day … just spend a few hours … you’ll get the idea quickly.

My goal was to wheel out of my driveway and down to the end of our property line. We live on a relatively flat ground, at least by Vermont standards and I thought this would be a great test. It’s not very far, maybe three or four hundred feet. I figured this will be a breeze and even thought about going down the road a bit further cause that’s where we’ll often walk the dog. There’s a great little swampy area down there and the dog loves walking that way to check the frogs and other interesting swamp creatures that reside there.

I settled myself in the chair, lowered the foot rests and gave both wheels a pretty good push … and away I went. Now from where I was to where the driveway and road meet is about twenty feet or so, and the road sits slightly higher than our driveway. You have to roll down into our driveway, which in turn means you have to roll up, to get on the road.

Well, to my surprise, I couldn’t get the chair out of my driveway. I just couldn’t believe it! I struggled using all my arm strength to get up this slight incline. Sher was with me and I asked her to give a hand, and when she did … she struggled too. To make a long story short, by the time we got back to the house, we were both exhausted.

I took the life out of my arms for days and I thought to myself “how the hell do people do this?”.  Now I not be “weight lifter Joe” or considered an athlete of any sort, but I’m no slouch either. I’ve done plenty of lifting and work in my day and always considered myself in reasonable shape. I may not have been able to run a marathon, but decent shape.

I was missing something, something wasn’t right. I see lots of people in wheelchairs getting around in tougher situations then this … but how the heck are they doing it? I became concerned and depressed that I may not be able to handle this … and that’s “not” where I wanted to be at. If there’s one thing I’ve insisted on since all this cancer stuff began, it’s that I stay independent as long as I possibly can. That includes getting around.  Around the house, around town, to and from work and even as much as I can in taking care of the house and grounds.

I came back in the house and started to research wheelchairs, what people can and can’t do in them, what’s practical, and what’s not. You have to remember, prior to this, Sher or I really had no wheelchair experience at all. Not in using one, not in pushing one … just no idea about how this entire wheelchair world worked … but I was going to find out. My attitude is and always was, if someone else can do it, then so can I …. it just takes a better understanding and some knowledge of the subject … so I went after it.

At first I thought, it could be me. Again, another friend came to the rescue with a pair of dumb bells, and I went out and bought a few others that were a bit heavier and started a nightly routine of exercising my arms to build up more strength.  Often while I sat at my pc in the evenings, I kept one hand on the keyboard and the other holding a dumb bell …. constantly lifting the weights every chance I got.  Doing arm curls, forward and backwards to build that strength up.  Yep, many of these posts have been typed single-handed!

The insurance company said I had to wait about six weeks for the chair even after three seperate doctors wrote prescriptions for me, so I figured I had time enough to build the strength up in my arms … although I wasn’t thoroughly convinced that was the problem, there was no harm in doing it because eventually it’d help no matter what. More investigating was needed, and I turned to my old favorite research tool “google” to more  the answers.

Within minutes I had stories and sites about dudes that have done all kinds of things in chairs … even freakin’ mountain climbing. I mean going up trails to the tops of mountains that would put any average two-footed hiker to shame. I was amazed, just couldn’t believe the accomplishments of some of these folks … and all I wanted to be able to do is get out of my driveway!

I started looking at the chairs, and realized there was a huge difference in what they had, and my borrowed chair, and what the insurance company had offered to get me. Oh no, I thought, this is the kind of chair I need and want. This type of chair will help make me independent. But can there be that much difference in the type of chair you’re using? …

Over the next few weeks I tried the borrowed chair again and again. Although I did get better and slightly more distance out of it, it still wasn’t “cutting the mustard” as far as being independent was concerned. That just wasn’t going to happen with this type of chair.

I may not need something I can climb mountains with (although I wouldn’t mind trying sometime in the future), but the design, engineering and strength is what was interesting to me. It left me thinking “could a well designed and engineer chair make that much of a difference in the way a wheelchair moved along?”. Well it can, it can make all the difference in the world.

I decide right then and there, and was convinced,  that I if I had this type of chair it would provide me with the independence I wanted and provide me with a fighting chance to do this.

Now to deal with the insurance company in getting what I wanted and needed.  It works pretty much like this. The insurance company (any insurance company) will get you a wheel chair in order for you to get around your house, but … if you need it for outside use … it’s your problem. From what we were told is that they don’t care if you leave your home, no matter what.

Hey! I wanted to go to work and like I’ve said before I want to be independent as long as I can …  what the hell good is a chair that will get me around my living room? I’m not giving up … I want to push forward. It was only a few weeks away from when the chair was to be delivered and I knew it wasn’t going to be what I wanted … but at the same time there wasn’t much I could do about it.

The doctors had written the prescription as a permanent need, in other words, not a rental, so I thought I’d have at least a chance at getting something that was good enough for me. Like I said, I didn’t need the super sports model, but something that was really meant to help keep one rolling along over most terrains and conditions.

It’s a funny thing, and not to get off track, but it seems that most of the insurance companies, doctors, nurses and state government agencies really struggle to fit you into a “box” that isn’t the healthiest mentally and physically for you.  They are constantly discouraging you from “working and supporting” yourself, offering the most  help to only those that seem to take that route and almost no help for those that wish to do as much as they can for themselves. I find that really odd … since it costs so much more money to support and help those that could do more for themselves.  Especially during these trying financial times.

Not everyone can help themselves or work, and I understand that …so we our society needs that  … but there seems to be no in-between help. If I were totally disabled, quit my job, collected the benefits offered,  I’d have no problem getting what I needed. Well, I don’t say that from personal experience, but certainly it seems that way.  If I quit everything I was doing and sat at home, they’d support me, but because I want to try and do for myself, they seem to offer nothing. Very strange.

Anyway, we got in touch with local Medical supply company (no names) and explained the situation, they offered to help. They asked for the prescriptions to be sent to them and that they’d arrange it with the insurance company.

In the meantime, the chair the insurance had sent me was exactly like the borrowed chair and we didn’t except delivery of it … sent it back.

The medical supply company arranged for me to see a physical therapist (even though I had three prescriptions) to assure that the chair was needed. OK, I understand that, there’s an incredible amount of fraud out there taking advantage of free money from states and insurance companies, but we’ll leave that for another discussion. Once approved,  they measure me for this custom chair and told me it’d be another eight weeks. I was bummed at the wait time, but figured it’d be worth it to have a chair that could deal with the demands I’d be asking of it.

They bought several models with them and I had the opportunity to try them out … and what a difference it made. I couldn’t believe it. I got in that chair and in no time I wheeling all over the place. I asked if I could take the “sales model” home!

Expense – Now these custom chairs cost anywhere between five to ten times the amount  of the standard chair they usually give you … but it works. That’s means my twenty percent was higher too … but I was excited and couldn’t wait.

The eight weeks went by pretty quickly and the results are fantastic. I continued with the exercises and  I now feel confident that could … one, travel to almost anywhere and be able to get around including cities or rural areas, you name it … and two, that I got the right product rather than just accepting what was to be sent if you kept your mouth shut and didn’t speak up with your needs and desires.

So in the end I think it’s important that you speak with your insurance company and explain what’s what. I have to admit that once they understood the need, they happily took the original chair they sent and replaced it with this beauty.

I should also say, that the borrowed chair came in mighty handy when there was nothing else and certainly better than no chair at all … but, nothing like this custom chair.

Now the photos don’t really do justice to this chair and sometimes it had to see the engineering that went in to it … but believe me … it’s there. No more struggles to get out of my driveway and down the road. Last week I walked the dog with Sher and Al for the first time in over a year, and I was able to bring Sher to the Mall and go around with her. I know that may not be exciting stuff …. but when you can’t do it, you miss the simplicity of life. Now,  every push I give the wheels I get equal if not better return in distance. The expenditure of energy put into moving, is worth it. No less than the trade we used to in walking.

Here’s a few photos and I’ll try and point out some of the differences:

Looks like a basic chair from here. The difference to point here is the overall weight. Standard issue chairs weigh about forty pounds and only get heavier from there. Add leg rests, arm rest and a few do-dads and you can reach fifty pounds easy. Again, for an able bodied man that’s not too bad, but ask your wife to pick up fifty pounds and wedge into your car trunk … it’s tough. This chair, fully dressed comes in at about twenty seven pounds … now just about anyone can handle that. And that’s half the dead-weight you have to wheel around.

The back carries a backpack for carrying stuff … you know, there’s always stuff to carry … even just your wallet and keys can be a hassle, so the light weight bag on the back is real handy.

Instead of being made out of pot-metal, the entire frame is made from high grade aluminum and the front casters are also aluminum and semi-pneumatic. They hold just a little bit of air, the reason for that it softens the ride just enough without causing any drag.

The rear wheels also use 70lbs of air pressure, again it softens the ride a little. You’d be surprised how the hardness of a totally rigid ride can affect you. Sometimes you can be more exhausted from the ride then had you expended your last energy to walk. They also come off the unit for repair, simply by pushing in the center knob … pop! they’re off in a second. In the event you need to fold your chair up really small … this is a huge advantage.

Rear brake assembly works excellent.

This whole chair comes apart with two simple “allen wrenches”  and can fit easily into the back of any small car. The trunk of my new 2010 Toyota Corolla S, can carry it with room to spare and it’s light enough to bring in and out anytime. It will set you back a few bucks … but well worth it.

As a final note, this chair has provide me with the freedom I was looking for, and even though it tooks a total of six months to get in my hands, it was worth it. So as a conclusion I’ll say that if you plan to be in a chair, or even if you’re a care-giver helping someone else, or whatever reason you’re looking at chairs, I’d recommend one something like this.

No more struggling, no more asking my wife for a hand.  My son and I named it “Bentley” after a wheelchair bound video character … next week the name and a little pin-stripping is getting put on by our local automotive graphics shop!