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.

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!