Chondrosarcoma – ah shit, bob's sick

It’s been an unbelievably busy few weeks (it’s almost a month since I’ve posted anything) … with summer drawing to a close, the gardens finishing up, school starting and the beginning of winter preparations, it seems almost unfair that summer goes by so quickly. I can see the days are already getting shorter and as the length of sunlight shortens with each day, I feel less and less prepared for another fall and winter.

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.

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This morning, once again, as often happens, I woke up with a song running through my head like an old steam train barreling down the tracks at top speed, funny how that happens every now and then, and I have no idea why. Haven’t heard the song in a long, long time, but I can remember the words like it was yesterday that I had. I just couldn’t get it out of my head, that deep, rich voice resonated through my mind as I made my way towards the morning coffee pot.

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.

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Seemed so quiet around the house today. It’s been a long time since I’ve spent any time alone at home. Sher has gone South to see relatives for a few days and Alberic has headed off to Summer Camp for a week. So it’s me, two cats, and a dog for the next few days! You heard right … I’m fending for myself and doing damn well at it too .

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.

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I felt like cooking this evening, besides wanting to give Sher a break (she’s been doing a lot of the cooking lately), I felt like something different, what I call “adult” food. Sometimes after cooking and eating simple meals (especially when Alberic is around), I tend to crave something different. Besides, we all too often fall into the habit of cooking and eating the same few dishes. Same can be said for eating out. But every now and then I’ve got to have that “something different” taste. Tonight was one of those nights.

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.

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Chondrosarcoma Update:
This past Thursday (July 22, 2010), I returned to MHG in Boston for some follow up scans and tests to see if there have been any changes in my cancer condition.
We left Vermont about eight in the morning and took the three hour our drive at a leisurely pace. I left a little extra time for the trip because often there’s road construction on route, especially in the summer. We arrived with about half-hour to spare but by the time we parked and found the Department of Radiology in the Founders Building at MGH that spare time was just about gone.

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.

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