Well I was really looking forward to this weekend! Three whole days off from everything … no work, no nothing. I figured I could finally get a few things done around the house, maybe a little work on the website, oh and maybe even work on my Cancer Tracker a little. Alberic wasn’t here this weekend so I usually take advantage of that time and get as much done as possible. Instead, somehow I managed to sleep the whole weekend away! Oh well, guess I needed it … sure feeling well now though!

Damn, Just What I Needed!

Truth be told, my weekend didn’t really start off sleeping like that … it started like this. I had gotten home from work a little early on Friday and thought I’d try and get to bed a bit early so that I could start my weekend off trying to do some of these little things I’ve been trying to do. With three days off in a row I figured I’d get some things done and some rest too … right? That balance that I struggle to keep going without reaching exhaustion isn’t always easy to find.

I got up early Saturday morning feeling pretty energetic and decided I’d cut some of the lawn (hopefully for the last time this year), so I went out into the barn and started the tractor. Now, anytime I plan to do something like this these days (but this I mean physical work), I take a dose of medicine before I start. The idea behind this is that I know I’ll be sore and hurting later … so I put the meds to work right away. Even though it’s strong stuff and does affect your judgment ( I never drive and take this stuff), doing little things around the house always seems to go OK. I may work a little slower, but that’s OK … I simply take my time and get the job done.

Sher wanted to run to store and grab some items for dinner and said she’d be back in a few minutes. So it left the dog, cats, and myself at home. Now you have to understand that our dog is really attached to Sher, she literally freaks out every time Sher leaves the house. She doesn’t go totally crazy, but she cries and whimpers while she waits for Sher to return.

Every now and then she’ll let out a bit of a howl (she’s a beagle and she’s good at that). Anyway, I just start to get to cutting and I decide to cut around the dogs fenced in area first. I take the tractor right up to the edge of the metal fence and cut along the edge as close as I can, and then down along the other side. I cut really close in hopes of not having to weed-wack along the edge.

Well, just as I start to cut within an inch of the fence, the dog comes out of the house, onto the deck (yep, she has a doggie door so we don’t HAVE to walk her) and let’s out the scariest,  loudest, blood curdling howl, I every heard any animal make, let alone my dog!

Now you have to remembered, it’s a beautiful quiet morning, sunshine, cool air and I’m a little bit “zoned” from the meds, and listening to the steady humm of the tractor engine running, which is already pretty loud … it’s a Zen thing … you know, you get into it and go with the flow.

The howl was so loud that it startled me … I mean really startled me. I jumped, I jumped right off the seat of the tractor … I mean that, my butt actually lifted off the seat when she howled! As I did this (really it was some sort of involuntary action), I twisted the wheel of the tractor and cutting carriage caught the edge of the fence … which of course, started to come along with the tractor.

I hit the brakes and cut the engine as quickly as I could (which unfortunately for the fence wasn’t quite quick enough). My first thought was that I run the dog over some how … and yelled out “damn it” … with that I saw the dog run back into the house like she knew what she’d done. Man, I was pissed and now I had to spend the energy I had unraveling the fence and tractor.

I was able to repair the fence easy enough but had to order a few small parts for the tractor carriage … what a way to start the day. Yeah, I laughing now … but I was hopping mad!

OMG … Now That Was Funny!

A few weeks ago, I really needed to get my oil changed in the new Toyota. I had tried setting up an appointment with the dealership where I had bought it, but after two phone calls asking for an appointment and receiving no reply, I decided to bring it right down the street to a friend that has worked on many of my cars over the years. OK, maybe that sounds a little weird, but it’s my habit to bring new cars back to the dealership where I purchased them for at least the first year or while they’re still under factory warranty.  After the car is a few years old then I bring it my local mechanic.

Anyways, I needed the oil changed and a new inspection sticker (it’s one year old now), so I decided that on the way home from work I’d stop by and ask if I could bring it by in the morning (before work), for a quick service.  However as the day wore on, and the time came to leave work for the day I found myself getting really, really tired and decided that maybe I’d put all this off until tomorrow or some other time, even though I really wanted it done.

But as I approached the auto shop (very close to home), I thought again to myself that I should really do this NOW. It’s in my nature to try and do things right then and there when the opportunity arrives. I hate putting things off until tomorrow because they often slip away and never happen … and that’s not me.

So as tired as I was (and always am at the end of the day), I decided it’s a now or never thing and pulled into the shop. As always, my friend came out to greet me and ask what was up. He knew in general I didn’t bring my new cars into the shop. I explained about the auto dealership not calling me back, and that I was due in Boston in a day or two and wanted to get at least my oil changed before I took that long drive.

As always, he was ready to help. He said if I hopped out of the car he’d do a quick oil change, inspection and get me back on the road in twenty minutes or so. I thought to myself, great! … that’s just perfect. I’m less than five-minutes from home, I can do this. I got out, handed him the keys and headed into his office to wait.  I figured I take my medicine and let start to work while waiting …. this way can take my nap as soon as I get home.

In the spirit of making a short story even shorter, I fell fast asleep on the couch in the waiting room, while waiting for my car. He had nice comfy couch and I was alone so I stretched out and was gone to dreamland in minutes.  Now my friend knows that I have cancer but doesn’t really understand much about it. He just simply knows I’m sick, go to Boston for treatments and return.  He helps keep my car in tiptop shape for those trips.

After awhile, I felt something poking at me … hard, really shaking my body, but being woken from a deep,  sound sleep,  I really wasn’t even sure where I was and kind of ignored it. Little while later … Boom! … again I feel something shaking me and I’m stlll having trouble opening my eyes.

Sher has been telling me for months that I’m not the light sleeper I used to be and the medicine I’ve been taking isn’t helping that situation either.

A third time, but this time it’s really a violent shake! I slowly come around and open my eyes to see a blurry vision of my friend holding something in his hand, his son is standing next to him. He had a look of relief and concern on his face. I hear him say, “Man, we thought you were dead or something!”  … “It’s six o’clock and we’re closing but we didn’t know if you were alright, we were just about to call Sher, or the police, or the 911 emergency line”! “we tried like four or five times to wake you up … but you weren’t moving”.

Now I’m awake …. well sort of.  I started to laugh when I saw the look on their faces. I made no excuses, just smiled and held my hand out for the keys, and made my way out the door without paying for their service or anything … got in my car and drove up the road to my house.

Of course the next day I stopped by and explained a little. Since then we’ve all laughed it off … but I can see a nervous look on his face every time I pull in .

Th -th- th- thats all folks!

Well I guess those stories  weren’t as short as I thought, or they took me longer to write then I expected they would … but my writing time is up for the day. I have a few more that ought to go in the humor section … which I don’t have on this website, but I think I’ll set one up for the future.

I never realized how difficult it is to write out a humorous situation or story. I don’t think I’ve ever tried before. It’s definitely challenging to say the least. Not sure how I did with this but I will say, there is some humor to living with cancer, and a lot of truth to the old adage that laughter is the best medicine … which I totally believe in. Thanks for taking the time to read this.

As my “todo” list continues getting longer, my energy levels certainly don’t seem to be keeping pace. As I look at the stack of mail, forms, credit card offers, catalogs, school papers and everything else on my desk, I feel stressed about keeping up with it all … but life must go on … right?

Just the stack of papers and forms Alberic brought home from the first day of school was simply over-whelming. Filling out your name and address twenty times (once for each form), just seems so unnecessarily wasteful. Couldn’t it be done just once?, can’t the school departments share information?

It seems this past year that Sher and I have spent more time filling out paperwork then we have anything else … and I feel bad about that … and worse yet, I don’t like supporting cutting down all those trees for such ridiculous reasons. It just isn’t a good enough system.

So this evening I decide to push it all to the side and write what I felt like writing and getting the other stuff off my mind for a bit.

This past weekend (even though we were already too busy) we had one of Sher’s children and a few their friends spend a couple days at our house. It was fun to see them and they had a blast with Alberic playing games both inside and out. One of the inside games we played was RockBand, and it was the first time that we played with four and five people. We really had a band going with two guitars, two microphones, drums and a bass guitar … lot of fun.

We ripped through the Beatles CD and a ton of downloaded tunes from the RockBand store. Great fun with everyone taking turns playing and singing. I must admit that Alberic (even though he was the youngest), had them pretty much beat. He is truly catching the grasp of what music is all about … and I think that’s cool.

Playing music is something that was in my house as a youngster and I believe it’s a great way for a family to spend time together. Like riding a bicycle, it’s something you never forget … you may get out of practice … but you don’t forget.

Health wise, I’ve been feeling “on again, off again”. Every time I feel like I’m building my strength and energy levels back up, I seem to get “pushed” back down again by one thing or another. We’ve had a few recent situations that have caused me (both Sher and I) some serious concern, but I decided to hold off a bit (not see the doctor) and see how things developed, in hindsight, I can now say, I’m glad I did. But it’s a tricky, risky, situation and maybe not the wisest thing to do. I’m not really sure.

It’s strange, but I feel obligated to explain myself and express my deepest thoughts on the way(s) that I may, or may not, refuse or accept, any further treatment for physical or mental changes, in a timely manner, if certain situations were to arise.

Understand what I’m saying?

Decisions like this are very personal and I am well aware that a price (whether it be large or small) is to be paid each time a situation comes up. I feel (I should say, I know), that the chances are great, that many more of these instances are to come in the future and that it’s of the utmost importance that it be understood for the sake of sanity in our household, , and those that work to help me maintain a reasonable quality of life.

Living with cancer requires a different level or kind of thought to manage life’s responsibilities. You tend to focus on the short term, you have to, there is always that little voice in the back of your head, that reminds you … “this isn’t going to last forever”. It’s a safety switch to be honest.

A safety switch in the sense that it prevents you from looking at unrealistically long term projects. It keeps you focused by forcing you to stay on top of what you have going and not drift into other things you’ll never finish.

Between you and I, I am not in a hurry to make anymore big changes in my life because for me, there is no going back, there’s no time … no time to waste that is.

What I’m saying is, that every time I have a physical failure of some sort, I don’t feel like I should run to the doctor. Now Sher and I have been going “back and forth” about this lately and discussing this is a “touchy” subject at times.

On one hand, I don’t want to be the “boy that cried wolf”, and on the other hand, she doesn’t want to hear “why the hell didn’t bring him in” … and I can understand both sides of that scenario.

There’s Never a Good Time –
For people in my position, … there is NEVER a good time for anything to go awry. Mainly because it’s never a simple thing to deal with, and truth be told, just like with you, there’s never a good time to be sick. What makes you think someone with cancer is any different?

You see those that face, or have faced the prospect of dying, don’t have the same sense of urgency as those that haven’t. You need to understand that death is already (in a sense) at your door step, and for some, while it’s hard to imagine anything worse, there are many worse scenarios then death itself.

Now that’s not a reason to ignore the simple fixes … but it is a reason to sit back and think about the decision you’re making, and to do things at your own pace.
This leads me to believe that it’s important to discuss this ahead of time with your wife, mate, loved one, family … something that I frankly, forgot or neglected to do. Well, I didn’t know! I’d never thought about to be honest … and sort of think “why the hell should I have”?

The ability to self evaluate ones condition is important here. I feel I’m pretty lucky when it comes to that part of dealing with cancer, but that doesn’t mean others around are so equally in tune. It’s my body, and I can feel when something is drastically wrong. Now more than ever.

Recently, we had several situations where Sher thought it would be wise for me to contact my physicians about some internal bleeding I’ve had. It came and left, came back, left again, came yet again and finally I said I would call or write. To me that meant that I’d put it on this weeks TODO list and go on.

But to Sher, it meant a whole other thing. She expected me to write/call immediately and get the situation under control and I can understand that. It’s a scary place to be, if you’re not me. And this isn’t the first time she’s reached out far beyond the “call of duty” and helped. There isn’t anyone reading this blog that doesn’t know how much she’s helped. From her perspective this was an emergency and she took the appropriate action by contacting my primary care and oncologists asking for advice as to what to do next. Both made the recommendation to get scanned and see a urologist. Makes sense right? What else would they say?

Well me, thinking I had all the time in the world (sort of) to deal with this, went about my weekend like it was just the everyday stuff. Not realizing that she had written to my doctors. I was stunned when she asked what I was going to do, my first thought was “do about what?”.

The problem of course, was that we were both looking at the situation differently. She was in a hurry, I wasn’t.

Again, I’m not in a big rush to bring things to a halt again.

I have to sit back and think … think about family, job, business, my body, my world, before making any kind of snap judgment. The result of something like this for someone in my condition could be devastating and besides that, it’s in my nature to try and gather facts and information before making any decision. Educating oneself and collecting information is important to me. Doctors aren’t perfect (although mine are damn close), and being informed and knowing what they’re talking about is helpful in making choices … there are always choices. That’s why we’ve gotten this far … we made the right choice.

There was the possibility that when the protons bombarded my system that they damaged some of the lower parts of my colon. I know it was hit at one point, because I felt it. We know that from way back in Boston, and so frankly I wasn’t surprised something like this could be happening. But does it really merit an emergency?

Well, in some readers eyes, I’m sure it does, to others it may not, but either way, I’ve decided to wait and see. A little more time to see if changing my diet, the amount of sleep, and the general lifestyle that I’ve been living, doesn’t have an effect on these symptoms.

If it doesn’t … then I’m off to see the wizard!

Yep, it was an old Johnny Cash song called “Five Feet High and Rising”. The true story about the Cash family farm (Dyess, Arkansas) in the 1937 Mississippi River flood and how the water kept rising until the chickens, cows and everything else farm, were under water.

At one point, as Johnny Cash’s father (Ray Cash) recalled the story, he walked into the house to pull some last things out before the flood entirely took over, and saw that the farm’s hens had moved straw into the house and made new nests on the living room couch and were laying their eggs.

Pouring my first coffee of the morning, I just had to sing a line of the chorus, I tried to sing quietly (Sher was still asleep), yet in the deepest tone I could muster, I blurted out:
‘How high’s the water Mama?’, ‘two-foot high and rising’.
‘How high’s the water Papa?’, ‘She said, it’s two-foot high and rising’.

Can you see this image in your minds eye? A young farm boy asking his mother how high the water was rising. A young boy perhaps, but old enough to know there was trouble ahead. Can you see the fear in his eyes? … fear of the unknown… and it was still raining hard, pouring in fact, as Mama was gathering the few precious family treasures to take.

I took a big gulp from my coffee cup and still humming the tune, began to realize it wasn’t so much just the words or the literal meaning of the song that were stuck in my head, but more of the feeling the song was implying, … that of the rising water all around you, and no safe place to turn to. The inability to move toward a higher ground … that’s what was hitting home.

It wasn’t long ago I was experiencing a similar feeling, the feeling that water was rising all around me in an almost hopeless effort to save what was left of my health and prolong life itself. It may not have been a flood of water that rising around me, but it was a flood of information and a quick life saving decision that had to be made. It was a decision I didn’t want to make, but had to. There was no higher ground, and the waters kept rising.

Still tired, I half-mumbled out another piece of the next chorus …
‘How high’s the water Mama?’, ‘three-foot high and rising’.
‘How high’s the water Papa?’, ‘She said, it’s three-foot high and rising’.

We were still trying to gather as much information about chondrosarcoma as we could … and having a hard time finding anything useful. Hours and days went by and the water kept rising slowly.

Doctors appointments, doctors opinions, suggestions, planned surgeries, hospitals, insurance, family, friends, kids, pets … yikes!, would it ever stop?

And again …
‘How high’s the water Mama?’, ‘four-foot high and rising’.
‘How high’s the water Papa?’, ‘She said, it’s four-foot high and rising’.

Then the trips to Boston, and along with it came, radiation sickness, burns, scars, winter driving, the holiday season,

And again …
‘How high’s the water Mama?’, ‘five-foot high and rising’.
‘How high’s the water Papa?’, ‘She said, it’s five-foot high and rising’.

Well, it’s been a year since this blog was started. Can you believe that? Yep, last year back in August (August 15th to be precise), Alberic and I decided on the name AhShitBobsSick.com and purchased the domain name … and some three-hundred twenty posts later, here we are. Although the water is no longer rising at the moment, nor has it subsided.

How high’s the water Mama?

Mama?

Taken 8/11/2010 Bellowsfalls, Vt.
Click the pic for larger view.

So what did I do with all this time on my hands? Well, today’s weather was just the perfect Vermont summer day. There’s a wonderful breeze, about seventy-five to eighty degrees and just simply lovely. What a day to be alive! I decided I’d take a short walk through our woods and check things out.

I haven’t walked our property very much this past year and with no one around I could take my time, move at my own pace, and rest whenever I wanted to. Not that others rush me, but I always feel obliged to try and keep up with others and not slow the pace too much.
For those that walk through the woods now and then, you know the forest and streams are always changing. They grow and the stream change shape with new twists and turns. New trees and plants pop up, and you can usually see the tracks of deer and moose and others that pass through in search of food, water and refuge.

I love walking the forest and the peace of mind that comes from spending time there. I mean just think about the word forest … “for-rest” … need I say more? I always feel like I can think clearer after a walk, I’m more in touch with myself, my emotions, and it always increases creative thought. After walking through the woods I always want to spend the rest of my day writing, painting or playing music. For me, it’s the biggest “turn on” when it comes to creativity and keeping that edge sharp.

Today I took my camera and walked the trails I’ve cut and maintained over the years. The ponds and streams were full of fish, frogs and others, splashing as I walked by as if to say “come join us”. One section of the trail follows the stream a distance and it was simply incredible to see all the life in the water. That’s one of the great things about having ponds and stream to walk … everything in the forest comes for water, so it’s always lively. I crossed a deer run and saw those fresh little “rasinettes” as evidence that they’d recently traveled through on their way to drink.

I stopped to rest under a large old tree that’s been there long before I ever discovered this place. I sat on the ground resting my back against it’s trunk listening to the birds and other noises that always fill the forest up. It was so peaceful I almost fell asleep … well, not asleep, but more like a daydream.

All these thoughts were going through my mind about how much the forest changed since the last time I’d traveled through, and the cycle of nature always renewing itself. Dying and being reborn, how the leaves drop from the trees each year and others return to take their place, how the wild flowers drop their seeds for the next generation, and how everything is intertwined and dependant on each other for survival.

I also thought about how I (and all people in general), fit into this scheme of natures renewal and found myself in a deep state of peacefulness that I haven’t felt or been in touch with for a long time. You know, I stopped and “smelt the roses” you might say. A wonderful experience to say the least.

As I stood up to start making my way back to the house, I walked about five steps away from the tree and turned back around to looked at it. I took a photo of it, my intent had been to take many photos today, but somehow this was the only one I came home with. Below is the photo I took. Click on it and you’ll see a larger version.

I had forgotten that almost ten years ago Sher, I and Alberic had hung masks and some other objects on many of the trees throughout our property. Alby always considered them magic trees, maybe trees that the Ewoks (from Star Wars) lived in. Today, after ten years, these tree hangings paid off in a big way for me. I hope you enjoyed this tale as much as I enjoyed the experience. It made me realize … that I really never was alone after-all.

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.

One of the primary things that helped me through that experience was that I wrote and photographed my way through it … and as many of you know I “blogged” a lot of it right here. I also managed to stash away as many notes as I could for later on … I had no idea what I might do with them … but I simply wanted and needed to get it off my mind, I wrote and photographed every day. No matter how bad or sick I was feeling, I made sure that I’d least make some kind of journal or blog entry and try to photograph something.

Flash forward a few months and you know I’ve been working everyday at my job, and running a part-time server and web-hosting business from home, and basically you’ve got a handle on the bulk of my daily activity. I’ve been working … and that’s a good thing, believe me, I’d go nuts without it.

It’s been just about 6 months since I finished treatment (last holiday season) and I feel like I’ve been learning a lot (actually an incredible amount) about living with cancer … after-all , that is my current situation. To live everyday with the challenges and discomforts, and all the other strange things that a cancer can do to your body and mind. I’ve learned, … adjusting as I go along, making life as comfortable and as productive as I can.

I’ve also learned that I can understand, and relate to, any other person’s life-condition. Which in itself, is a very powerful thing.
I find I have a commonality with so many people … as though I’m part of a group of special people that are surviving in a special environment that not everyone has the pleasure to experience. I mean that seriously.

I know there’s a lot of people out there that think “oh those poor suckers, how do they do it?” But do you know what I’m finding? What the truth is? There are many like me and you know, we don’t bullshit each other. There’s a silent understanding between those that are in a similar condition or situation …. and it can provide for a wonderful experience if you open up to it and just let it flow from you.
There’s nothing like being in the “driver’s seat”, first-hand experience is (unfortunately), the way to go here or at least it is for me. It’s this commonality, that brings me to my latest photography project.

I’ll leave out the story of my life’s photographic experience mainly because it spans over a lifetime and I’m not really sure that it’s relative to this project. I will say that since I was a teenager and had built my first darkroom, developed my owns films, printed my own photographs, I’ve never really stopped. Camera’s changed, darkrooms turned into computers … but the art of taking a relatively decent photograph hasn’t really changed.

Back to today: The Project,
Here’s what’s so strange… I don’t know if it’s some personic magnetism, some kind of karma, so called fate (call it what you will) … but since my own personal experience with cancer, which simply isn’t that long ago, I’ve met so many people with similar cancers, tumors, and other totally debilitating diseases … that it must be, meant to be. For some unknown reason this is being literally shoved in my face and I just can’t ignore it any longer.

Karma has a funny way of guiding you to where you ought to be, and then it’s up to you, to do with it what you will. Between that thought, and an uncontrollable desire or need to photograph and write about my experience, and the meeting of so many others, has led me to the point of bringing this experience to others in a way that may be useful. A way they’ve never experienced before. To see life with cancer under a different light.

What I’m hoping to produce are some “real-life” photo essays on life with cancer. That’s right, I want to photograph myself, friends and acquaintances, all with the commonality of cancer.

But there’s an different angle to these that I want to try and capture, that isn’t normally shown in the pamphlets, brochures, TV ads and all the typical places that the average person sees cancer.

Many of us have had a relative or family member that went through the cancer experience, maybe when we were younger and didn’t really understand what it is to live with it … or we’ve heard and read stories about the Lance Armstrongs of the world, but me?, I want to show real life.

I want to offer a message to those entering the “world of cancer” that this is what to expect, and to prepare for dealing with it. One of the most disappointing things in my life, was when I was first diagnosed with cancer and realized that for my kind of cancer there was absolutely no information available about what to expect. Not even after Google-ing it did I find anything on what to really expect. Let me tell you, that sucked.

How I plan (hopefully) to do it:
I’m hoping the subjects of the photos () will show a piece of their life that has changed or has been effected in some way because of their cancer. A piece of reality. But I’m leaving that decision up to them, whatever they want to show or whatever message they wish to convey. I’ll try and capture on film. Because they are in all different stages of their experience, I suspect it may take several sessions of photographing them, over a period of time. But I’ll take whatever I can get for my project.

What I’m most surprised at, is how “open” people (the ones I’ve already asked to partake in) have been with this …. it’s intensely personal and I expected to be refused by 99% of them …. but instead, I’ve had a 100% acceptance rate! I have to date asked five people to allow me to photograph them while they experience their “trip” and amazingly. everyone one has excepted.

Maybe it’s part of my having cancer that allows them to be comfortable knowing the photographer is in the same” boat”, or maybe it’s a chance to express their feelings, let out emotional stresses …. I don’t know, but it’s certainly not what I expected.

I know it’s an unusual thing to do, an unusual request to ask for, but people, all people seem to be interested in this . I knew I was interested … but never thought others would be so willing too. I think by allowing them (the cancer patient) to choose the activities, they seem to be expressing “life with illness” all be themselves and that’s the intent.

I’m doing most of the photos in old-fashioned black and white with a slight sepia tone. I think those photos tend to show emotion much better then color. I’ve added one to the bottom of this post for you to see the quality, of course these have been reduced in size for the web, but they average about 36 meg each. They could be printed as large as an average poster and be crystal clear.

I’m looking for shots that are powerful and express “life with cancer” … it can take hundreds of photos of each subject to capture this emotional expression that I’m looking for.

Now, I have not included any of the real photo’s I’ve taken for the simple reason that I’m holding them back until I have enough to do a size-able and impressive showing, so don’t expect to see any on the blog for some time to come.

As examples of the kind of expressions I’m looking for:
In my case, as odd as this may sound, one of the most difficult things I experienced in the beginning of all this and during treatment was shaving. I know that sounds crazy but here’s the scoop. In order to shave in our mirror, I had to bend slightly forward to see clearly … you know, move closer to the mirror, lean forward just a bit. However, this position was very difficult for me to hold because of my lower spine had been so messed up by the cancer and basically cooked during treatment. So one of my pictures is a photograph of me shaving in my new mirror that pulls away from the wall. A simple change in a bathroom fixture, that made a huge change in my ability to shave and care for myself.

Get the idea? … this is the type thing I’m looking for. Adjustments, changes, fixes … these are the things people aren’t told about, they’re not ready for. I also plan to write or ask the subject to write a small piece about their experience and what the photo is about. An extended caption you might call it.

What other things could be effected? Think about it?

Why am I doing this?
To be totally honest, I’m not really sure. There is simply some driving force telling me to be artful and produce something so that others can see what living with cancer is like … you know it’s not all bad, it’s a lot of adjusting and things you always took for granted don’t quite work the same. But we find ways around them and move forward.
Anyways, if you know me, and you see me with a camera in hand, I may be asking you to partake in this adventure. Yep, you’ll be asked to sign a photo release form, you’ll be welcome to digital copies of all your photos taken, and you may be helping someone in the future” get a handle” on what we’ve gone through.

If you have an interest in being involved with this, or know someone who may have … get in touch.

If you click on the photo below you’ll get a larger version for inspection of the quality. This photo probably won’t be included in the collection and it’s being posted only as an example.
A simple self portrait.
More to come.

Over the last week or two I’ve several emails, phone calls and what-nots, asking how I was doing and just general chat … so I figured it’s time to write a little something and let my world know that I’m not only alive, but doing pretty well lately.

In general, I’ve been feeling pretty good, not much of a change, which in my case is a good thing. I can’t say that I’m living a pain-free energetic life, but I am doing what I consider reasonably well. The meds continue to rob me of energy, but allow me more motion then I’d have other-wise. I consider that a fair trade. Now and then, especially when I don’t get enough sleep, I’ll spend a day or two “down in the dumps”, but it seems to pass by as soon as I catch up … so that’s understandable too.

I’ve been swimming quite a bit, trying to wheel chair at least a mile every night after dinner (except the past few days because of the heat), and continuing to work around the house every chance I get. That’s the extent of my exercise which isn’t bad for me. My daily diet hasn’t changed much except during the heat-wave, which I’ve experienced my whole life … when it’s hot, I eat less. I think most people do that so I don’t find that surprising.

This past week I went to our local Blood Lab, and got all my blood tests out of the way, next week on the sixteenth I have an appointment with my primary care physician, Dr. G. Clay for a general checkup and discussion about pain management. As I stated before I am considering medical marijuana for boosting my appetite, pain control and sounder sleep.

On the twenty-second of July, I return to Boston for MRI and PET scans to see if there has been any changes in the tumor or cancer.

I don’t feel like there has been any change for the better or worse. I’m pretty much “in tune” to what I’m feeling these days and intuitively I don’t feel anything is happening. But I agreed to continue to be watched … and so, away I go.

Currently, it seems that the grip that chondrosarcoma has on me, has not continued to worsen. What I mean is that the pains and discomfort that were there last year when I went for treatment are still there but, they are not worsening and that’s important for me. I already have a hard time walking and maintaining any reasonable level of energy. I consider myself very lucky in the fact that I didn’t totally lose mobility or any of the other functions that were in jeopardy of being lost. I pulled out of what could’ve been a total disaster pretty well. I didn’t take that huge hit that often brings people to a state of not being able to care for themselves … and for that I’m thankful.

Will I be so lucky next time? … who knows? but hopefully it’ll be a few more years before I have to deal with it. So in a nutshell, I have to say that for the moment, the proton therapy that I received seems to have bought me some of that “time” I was looking for.

So what else has been absorbing my time?
Well, last week Alberic and I hooked up a little irrigation pump for our garden! For those that don’t live on the east coast of the US, we’ve been experiencing not only drought like conditions, but a tremendous heat-wave to boot! So last week we set up a water pump in one of our ponds and pumped water through a series of hoses, uphill to our vegetable garden.

Alberic is twelve now, and really becoming a giant help to me when it comes to things like this. I explained the plan, what I wanted to do, and he jumped right in and gave a hand with every step of the way. Basically, we took a small drum, drilled some large holes in the sides, but along the bottom of it to allow water to enter into it. Lowered the pump in, and placed out in the pond. We then ran electricity to the pump, and hosing from the pump about two-hundred feet uphill to the garden and volia! Sher had a good supply of water to keep the garden going and growing.

I’ve also been putting some time into Rock Band Two … ok, ok, I know it sounds silly but there’s a reason behind why I’m using some of my precious time to play a video game. Once again it involves Alberic. We have several real guitars in our house, and for awhile now I’ve been working on getting him interested in playing music and “turning on” his creative juices, not always an easy thing to do with a child. Anyway, I found that by using the Rock Band video game and the idea that a child can almost instantly have success in playing an instrument, was enough to spark his interest … I’m not sure “spark” is right word … I should say it exploded!

Suddenly, out of no-where, he was into it so much and now is transferring that knowledge to his “real” guitar, that I can barely keep up with him. It’s frightening how fast a kid can learn something when he wants to. So now, every chance we get, we’re playing tunes together and having fun competing for speed and sound. Fabulous! Now, I have to play twice as much as him, just to keep him from getting so much better than I am, that doesn’t pass me by!

One more thing about Rock Band, it has not only exposed him to guitar, but also bass guitar (which he really seems to love, drums (for when he’s got extra energy to expend) and … and this was the most unexpected thing … vocals, yep … he’s practicing his singing, and to me, that’s made it all worth it. He’s memorized the words to dozens of songs, and even ventured into writing some of his own. When he was younger we’d often make up our own words to songs (just for fun and to personalize them), and all that’s paying off in a big way. It gives us something else in common, and something fun to do at anytime, whether we play for fifteen minutes or three hours … it’s always a fun time.

I also have an entire songbook of songs that I’ve written and worked on over the years that we’re working on drum and bass parts for … so plenty to do, and plenty to work on. Music for a child is something that lasts a lifetime, and I’m glad I’m able to pass that on to him. That could be a series of posts in itself.

I’ve also been doing a lot of computer art again using the POVRAY program. I started using it many years ago and learned the language to the degree I can write it almost as quickly as I can English. If you don’t know what POVRAY is, you can visit their website and learn (www.povray.org).

I guess this post is getting a little longer than I expected this evening, but I’ve also been building several websites for some our server clients. I’m also in the process of updating some of our servers in order to provide our clients with the latest and greatest capabilities that are on the internet.

So as you can see, time is not being wasted. I’m busier than ever with no time to waste. We did all take the time to go out and celebrate the Forth of July in Saxtons River, VT, where they had a great cover band named Shakin’ All Over (50′s and 60′s rock and roll), which Al just loved too!

Sher is well (also very busy), and things in general are going fine. Of course, I should mention that ninety-nine percent of what I’ve been doing wouldn’t be happening without her. She is the driving force that allows me the time, energy and desire to continue fighting forward.

A few last mentions:
Dave, … it was great to hear from you. I hope all your summer plans work out for you and your family and best of luck to both you and your wife for that family wedding! How exciting.

Bill and Rebecca, … I hope and pray things work out for both of you. Worsening health issues just plain suck and I hope Becca has as speedy a recovery as possible. If there is anything I can do … just say the word.

Rayster, I hope you’ve had a great couple of days away! Nothing like getting away for a bit and relaxing. Taking the weight of the world off your shoulders is an important thing to do now and then. I know it’s about time for Sher and I to so something similar soon!

Rose … I enjoy your emails so much, so exciting getting letters from the other side of the pond. Please give your daughter and grandchildren my best wishes. I hope you enjoy your visit to the Stocholm arpichelago! That sounds awesome! So glad you enjoyed the pics from Boston. I was surprised that you visited Boston in the late seventies … fabulous! I’ll write soon!

Sandra … thank you for all the txt msgs. and emails. As you can see, I’m pretty darn busy these days … but never too busy to reply. Thanks you.

Howard and Sandy … If you visit Vermont again, for sure we’ll play some music. How could I not? I’d love it. I’ll even make you both another shrimp dinner!

Steve and Sarah … glad you got a chance to talk with Sher last week. You caught me cat-napping (like a lot of folks do these days), I’ll give you a call over the next few days … are you enjoying the heat?

Mike C … I didn’t forget you man, just haven’t gotten there yet. Next time you’re in VT give a call!

Thanks to all that have written and called over the last week or so …

Oops … thanks for the pepper plants Harry and Kate. They’ll be in our garden this weekend!

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!

For those interested in our recent Boston trip, there are lots of photos here: http://picasaweb.google.com/116405034524500132179

I had and still do intend to write more on Boston but simply haven’t had the time to do so.  

One of the things that’s been keeping me busy is that I finally got my wheelchair … and let me tell you what a difference it made. I have planned a post (with some photos) about it for this weekend.  Hopefully Alberic, who took most of the photos on the Boston trip will help me take some pics of the chair and explain the difference between a well-made wheelchair and the typical chair you see at most hospitals.

Last weekend I went to the mall in Rutland …. and what a pleasure! Now I’m personally not very big on malls, and there’s between little and nothing I want to purchase from them … but it was great to be able to take Sher and let her go do some shopping … which is something she does  enjoy. Earlier this evening, we went out and walked the dog together … something I haven’t done for almost a year. OK, I didn’t walk, I wheeled … but still, it was great to be able to go along.

This weekend is also Father’s Day and we still have to do a bit of celebrating for Alberic’s birthday … so it’s going to be a busy, but fun time. Al’s last day of school for the year was this past Wednesday, and next year he’ll be going to a new school.

We finally got all the light fixtures replaced in our house from last winter’s electrical disaster.  Can you believe it took this long? I have to admit that this time, it was not the insurance companies fault for slacking … we (well, mostly Sher) had a really, really hard time finding replacement lights. I know that sounds crazy especially since we do a lot of shopping online, but it was very challenging to find the right things. Crazy, but we’re both happy it’s finally finished. They are installed and lighting up rooms! Life is wonderful!

I’m also beginning to do research on the possibility of using medical marijuana. It’s an incredibly complex set of rules, regulations and hoops to jump through but the rewards can be extremely helpful. Let me explain how this could work for me … or better yet, let me leave for my next post. Ohhhh … so much to write about.

It’s getting late and I have to work tomorrow morning, but over the weekend I’ll try and write a clear explanation of why I want to try taking that route, even though it’s definitely not the easiest way out of the daily pain and nausea issues I face. It’s bedtime for me …. good night Alberic.