Chondrosarcoma – ah shit, bob's sick

I’m was sitting at my PC earlier today, staring at the monitor, thinking about what I should be doing instead of just sitting here. I could at least be writing something for the blog. With all the things going on in life you’d think it’d be easy to conger up something fun to write about. It’s that time of year between the holidays and while usually busy, I should be cheery and full of exciting things to say …

…. but not today.

Sometimes it’s a struggle to put, not only your thoughts in order, but then into words, and words that make credible sense.

It’s a cold, cloudy winter day here in New England, grey with a heavy overcast. A light mix of snow and rain is falling, and as I glance out my window, I think it’s the kind of day that often brings a rafter of wild turkeys running through my backyard … but somehow, it seems darker and colder then it ought to be, still be allowed to be called a day.

My bones are aching too, I’m not sure if it’s from the dreary kind of weather we’re experiencing or if it’s just par for the course of living with cancer. But I guess that may be a déjà lu for those regular readers. Yes … it’s a real phrase … no kidding, like the more common term déjà vu which basically means “already seen”, déjà lu means something you’ve “already read”, or “read before”. On days like this, I often think I’ve written enough … maybe too much at times.

While I sit here, I can hear the occasional car drive by outside with the sound of it’s tires working their way through the evening slushy mixture, and I think that if it were all snow, I would have never have heard it. I’ve always loved the way snow muffles the sounds of society … that, almost total silence. Funny thing too, I’ve heard that sound everywhere I’ve lived (at least in the northern regions of our country), whether it was in the city, suburbs or rural areas. It always there …. yep, even in the middle of New York City the snow muffles the sounds outside in the streets. Even out in the woods the sounds of nature are silenced by snowfall. Just one of those beautiful things in life I guess.
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Sleepy and Me – Pushing Your Limits: Thursday, May 20, 2010

The other day I wrote a little bit about “pushing the limits” after cancer treatments and I thought I’d comment a bit more about it. I think it’s an important subject to look at, just about everybody that receives any type of cancer treatment, is effected by low energy or will be.

It’s literally a daily battle, and I believe there can be several reasons to suffer from lower energy levels, then those you might say you’d normally have. Some of it is literally physical and some of it can be can be psychological and both, can be equally as dangerous to your health.

Before being actually diagnosed with cancer I felt my energy level dropping. I attributed that to age, and working really hard all the time. Long hours, raising a child, running a business, being involved with several groups, doing radio shows etc. etc. Busy, … sixteen to eighteen hour days were common and a ten hour work day was like taking a day off. No kidding.

Not unlike most people, this went on for years. So long in fact that I really didn’t notice what I was doing. Burning the candle at both ends doesn’t begin to describe the lifestyle. It’s crazy when I think about now, but that’s what life was like then, and it wasn’t long ago.

So last August when I was diagnosed with cancer, it was one of the most difficult things for me to deal with and face up to … and to be completely honest, I’m still dealing with it. Slowing down, letting things go, wasn’t in my vocabulary. Was my body telling me it needed to rest?

My doctor sure was … well after he rushed me off for treatment that is.

During treatment, the radiation was so overpowering that I couldn’t do anything but sleep. I’ll probably never know for sure what percentage, of that amount of sleep, was due to needing rest, and what was caused by the treatment … but I slept more then, than at any other time in my life, by ten-fold.
On a daily basis, after being treated (which took about two to three hours a day including travel time), I’d go back to where I was staying and go back to sleep, and I mean sleep. I was literally sleeping close to twenty hours a day! I think back now and still find it hard to believe.

I’d sleep for ten or so hours, drive to the Proton Center, get treated, drive back home and go back to sleep for ten more hours, and get up and do it again. It was almost embarrassing.
Of course radiation at the levels I was receiving, was causing a lot of this … it is without question exhausting. I don’t care how tough you think you are … it’s going to affect you. You may get away with it for the first week or so … but eventually, it’ll catch up with you.

I’m getting sleepy just writing about this and re-living it!

I think part of my problem was that I started off exhausted to begin with … but then who isn’t over working these days. I mean you basically have to be if you’re going to survive in today’s world.
Who’s idea was it anyway? the idea that we work all day, and every day in order to simply feed our families. What a ridiculous way to live! But we do, and we do it everyday. I curse the bastard that came up with eight, ten and twelve hour work day. Our entire economy is based on it. But let’s not get off on the political reasons why life is the way it is … for the sake of this writing let’s just understand that in this country we work too much, and too inefficiently, and that’s that.

Any young couple raising a family today is suffering for more reasons than I can put in this post … but they’re especially suffering from being over-worked or under-paid. I know families where both parents are working two jobs each and they’re barely able to afford to keep up … and that’s a crime. Who’s raising the kids?

While we’re off topic, I’m listening to the news while I’m writing this and it’s so freakin’ discouraging to hear all these stories about BP and the Gulf oil leak, Illegal Immigrants, the financial crisis, the wars in Pakistan and Afghanistan (yep, we’re still at war, in fact it’s been pretty constant since ahhh 1776?), BPA plastic in our drinking bottles, Autism in our kids, the evil Monsanto corporation, and the list can on for-ever. Our children are getting dumber and dumber, our society is falling apart and the main headline news is covering more and more on Tiger Woods then anything else.

What’s wrong with this picture? Talking about the Gulf oil leak, here’s one the things that really got to me today. On the news they said that a “cap” of seventy-five million dollars was what a company like BP was liable for, when it came to paying restitution for people’s livelihoods that were affected by the oil spill. We’re talking about the entire Gulf Coast of the United States.

BP profits are approximately ninety-three million dollars a day. Now, you tell me who in our government signed off on that deal? Which one (or group) of our wonderful politicians thought that’d cover the tab? How do deals like that get signed off on … and don’t tell it’s Obama’s fault. Can you say lobbyists? or payola?

Ok, ok … I don’t want to drift off on politics, we were talking about young couples trying to raise a family in today’s world. No, no, we were talking about the effects of cancer treatments including chemo, radiation etc.

Back on topic:
Now, add to this therapy induced sleepiness, that you’re usually not feeling very well, and you begin to get the idea, of just the side-effects of cancer treatment. At the same time … your body is working overtime fighting the cancer that running through your veins! So there are plenty of physical reasons why one might experience exhaustion during treatment.

Then there’s the psychological effect of having cancer. Or are you too “cool” to admit that something could have a psychological effect on you? While this may not appear to a factor immediately, it will be. It can have an incredibly powerful, almost depressing effect on you, and that alone can be draining, big time. Even if you’re keeping the spirits high (and you should be), it is still a force you have to deal with.

Now I’m saying this negatively or trying to frighten you, I mean it. Day after day, you slowly realize that having cancer isn’t like having a cold, or a sore throat, … not even the measles. You won’t wake up in a few days from and get over it, not even in a few weeks, … not even when they tell you, “you’re clean” or in submission.

At night, in bed, when it’s quiet and you’re alone with your thoughts, wondering if all these treatments of chemicals , radiation, injections , and scans are actually doing any good. It starts to “sink in” that this is for-ever. You’ll have to deal with cancer for the rest of your days.
I should say here, that this is one of the most important reasons why you should put as much effort as you possibly can, in keeping your spirits high, without getting carried away with thinking you’re miraculously cured. I’ve said before in this blog that I don’t believe in the positive thought theory (here’s the link ) and I still hold that to be true. Maybe the key here is finding a happy medium.

Don’t believe for a moment that if you go through a few treatments and everything will be great again, and don’t think you’re going to die in three days either.

Take some time and measure up your situation. Understand where you’re at. Start working at, or completing some of those goals you’ve always had, but never had the time to accomplish. Even if it’s something silly like throwing out all those boxes of stuff in the basement or attic.
Maybe you’ve always wanted to do something, something that meant something to you personally … what-ever that is.

Maybe this is a good place to stop for the time being. Know that energy is going to be low, and know that you can still do things that require energy, but that you simply need to adjust. We’ll discuss this again.

There’s a reason they call it “living with cancer”.

Thankfully, things have calmed down here to a reasonable degree. Life isn’t back to normal quite yet, but it’s close and getting better every day. Sure, our stove isn’t working and we’re missing some of the creature comforts we had, but we’re alright and after-all that’s the big, important thing.

Speaking of the stove, one interesting thing that we’ve come up against in ordering a new one is that most, if not all of the stores, don’t actually have any stoves you can physically look at any longer. Which really came to me (and Sher) as a surprise.

I admit that it’s been awhile since I’ve bought a stove, but the last time I saw them on display was in a Sears, in Rutland, Vermont. We thought this weekend we’d go out and buy a new stove, and deal with the insurance company later … but at least we cook.

Friday morning, when I left for work, I suggested to Sher, she call a few places around the area to find out who and what was going to be open, and what they have in the store that we could look at, figuring we’d hop in the car this morning and go searching.

I’ve made too many long, cold trips to stores here in Vermont, in the middle of winter, only to find out they didn’t have what I wanted, or they were no longer in business, they weren’t open that day, or any of the other things that can change with time.

I left for work fairly confident that we’d have a list of places we could chose from, and what the heck, we’d make a day of it. Take our time, have lunch out, pick up some other stuff while we were out.

It’s hard, if not impossible for me to go shopping like this any longer. I can’t just “cruise” through the stores at ease like I used too. So accuracy in the research of where to go was going to be a big part of our trip … and besides that, we are in a hurry to replace it. There’s nothing to really cook on, well we have the BBQ and fireplace, but that gets old quickly … nothing like the stove.

Anyway, later in the day at work Sher IM’s me (instant message on the pc) and says that none of the stores have cooking ranges that we can go look at. I said, I know the Sears in Rutland has them because I’ve seen them before and not “that” long ago. She said they told her that they no longer carry stoves in the store, but invited us to come up and order from the catalog.
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I have to schedule my first oil change and scheduled miles service for my new Toyota this week. Sometime before Thursday, because I’d like to drive it out to Boston for my CT Planning Session. That will provide with an assurance that I can actually do, what I plan to do on a weekly basis for the next 3 months. Driving long distances can be a challenge for me at times and I rather know now if I can or can’t do this by myself.

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

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

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

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

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

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

More to come …

That’s right, you”ve read correctly!

You can now order your very own Proton Power T-Shirt from AhShitBobsSick.com!

Order 2 NOW and save!

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