Chondrosarcoma – ah shit, bob's sick

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”.

A couple of nights a week, or as time allows, I do some degree of research on the web about living with cancer. Rarely do I ever come across an article that provides any actual useful information and reflects the reality of the situation. Most organizations and hospitals are offering what I might call “cookie cutter” information with absolutely basis or grounding in reality.

What I mean by “cookie cutter information”, is that it seems like some one, long ago, made up a list of what it might feel like, to have and live with cancer, and nothing else has ever added or changed in it since. Well, except for updating the style of language to make it sound new and fresh again. In other words, I don’t think anything constructive has been added to the basic information you get from these organizations since the nineteen fifties … and I mean that honestly.

Without getting into the politics of it, I consider this pretty frightening considering the wealth of many of these organizations and their lack of:
a.) being in touch with reality;
b.) b.) collecting and mining any real life data.

I don’t say that to insult these big organizations (although, I could justify that most them deserve it), but something is wrong.

With millions and millions of dollars to allegedly spend on research, they offer no realistic “look” at what a cancer patient is facing, or about to face for the rest of their lives … and that bugs the hell out of me.

I don’t want to name what organization I got this from, because the idea of this is not to smash a particular organization, but more like organizations in general. Now I do believe there are some whose intent is real, and the work they do by far out weighs the example I want to make here. Although I should add here, (being true about keeping this blog realistic), that in my personal experience, the bigger the organization, the more they failed at actually helpful. Short of providing people with jobs. That being said, here’s what happened:

The other day, I was talking with a friend who is about to face chemotherapy treatment. Somehow, we got on to the subject of appetite, and how it’s effected during and even after treatment.

Read more…

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.
Read more…

Wow, it’s Wednesday already! … the week is just flying by. The radio show went pretty well last night, not quite up to par … but definitely getting better. While we’re on the subject of better, I’m feeling better too! Although I’m still having a problem with energy levels, but the hours I am up and about, appear to be getting better.

As a simple an observation, since treatment ended, I have felt a very slow, but steady increase in my energy level, and at the same time, a slight decrease in pain levels. The pain is not gone because there’s a lump of bone where one shouldn’t be, but it is definitely either getting better or I’m growing more accustomed to it, or the medications are working better. Which ever it is, it’s a huge relief to be able to function with lesser pain.

In two weeks I head back to Boston for the first set of tests since treatment. It’ll be interesting to see how things are progressing. Although I don’t think I’ll return with any solid answers.

As for my walking ability, that’s a little harder to judge, but there’s also change there.
For one, just the obvious concept that if there’s less pain, then it’s easier to walk. Most of the average day I spend I seem to be doing fine. At work for instance, I seem to be able to get around pretty well, by the end of the day my legs begin to tire. The furthest I walk is across the street for lunch and that seems to be OK. Maybe a slight struggle getting back up the stairs on the return … but not bad.

It’s too damn cold for me to go any real distance and put walking to the test, but the walking I am doing in general, does appear to be getting easier.

I don’t expect to be able to walk like I always have … but it feels mighty nice to walk across the street and not be in pain for the rest of the day.

In a nutshell, while I’m still fighting off the “sleepies”, and I can’t run a marathon, and I’m still always feeling cold … I am feeling better then at anytime since all this started.

How long will it last? Well, there’s no way of knowing that … but I’m taking advantage of it while I can. What’s that old adage? “make hay while the sun shines” … yep, that’s what I’m working towards.

Now if I could only figure out how to add about ten more “high-energy” hours to my day, I’d be feeling really good!

Once again, we prepare for the 3^rd week of IMRT Treatments at MGH. I expect this to be an exciting week. Radiation doses will increase, and so unfortunately, the need for more sleep will increase. It’ll be nicer when these treatments are over because they tell me that the effects from direct proton therapy is much lesser …. I hope so.

It’s depressing losing time to sleep … I know that may sound ridiculous but it true. It’s like a double whammy. First you have to drive to the hospital, then wait in the waiting room for a bit, spend a ½ hr in the micro-wave, rest a few mins before driving, then drive back, and then you have to lay down for (what I’ll call) a re-grouping nap. You just have to sleep, your whole shuts down about an hour after treatment due to lower oxygen levels in your blood. After that nap … then you’re approaching being OK for the day. But you usually have to eat (usually a piece of bread or something really light) by the time you wake up … now it’s close to noon time and your day is just beginning.

I’m not used to that! That’s pulling about 6 hrs a day out of your time … and then you have to do everything else you have to do, to survive … it’s not an easy schedule to maintain. This week will be the first full week of treatments, the past 2 weeks have only been 4 days long because of Columbus Day and I started a day late (on Tuesday) on the first week.

It’s easy for the nurses and doctors to say “oh yeah, don’t worry about sleeping so much, it’s good for you, you need it”. Well that’s all fine and dandy, but how the heck are you supposed to live. The docs and nurses actually look down at working while you’re being treated … as if you shouldn’t be. The thing is, they aren’t offering to pay your bills and expenses either! Yeah, combine all that and you end up working until 10-11 at night, every night, and that’s just to keep on an even keel.

The expense of maintaining two lives, in two places, is twofold. While your expenses are increasing, your income is dropping … not easy to deal with. And then of course, there’s always the folks who say “well take it easy”. Wow! … how?

I said before in this blog that I consider myself really lucky, and this is another example of it. At least I can work, I have the work and I don’t have to show up physically at an office to do it. Can you imagine if I couldn’t work remotely? How would my bills get paid? How could I afford my drugs? How could I afford dinner? Who’d be paying my electric bill, heat, water… well do you remember those folks that are depressed and not positively thinking in the cancer center … that’s the position many of them are in. They lost, not only their fight with cancer, but their drive, their income and many their family and friends. So yes, I consider myself very lucky in this sense … very lucky.

A diagnosis like I had gotten, can bring not only you, but your entire family to a crippling position financially. And then just think … the bills haven’t even started to come in the mail yet. I honestly don’t know how other people and families make it without becoming severely depressed.

I suspect, that after treatments, considering they are as successful as they can be, that I’m still going to be able to work and function reasonably well. I may well never regain all that I had … but I expect to be able to earn an income and live awhile longer. Now at some point, yes I’ll have to stop, but hopefully, I’ll have some more time to prepare for that.

Luckily, I actually have more work then ever. My job is going forward and my business is growing and continuing on reasonably strong. Getting and staying organized is the key here … getting as much done, as quickly as possible, and still leaving enough time to acquire enough rest to go on.

Quick Notes:

The weather for tomorrow doesn’t look great for driving. Snow and rain mix is expected for the drive to Boston, and high wind and rising tides and flooding are expected on Nahant. So it doesn’t look like a fun drive.

On one of our servers we had to swap out a huge hard drive that was used primarily for backups. It gave me about 6 hrs of a hard time … but then we it going, and it’s been fine since. Yep … with a little help from our friends.

I’m in the process of moving some of our accounting functions over to Quickbooks Online … that’s another challenge. But it does allow for me to work on our business online, without having to bring all the stuff back and forth to Boston. It’s an organizational, time saving thing, and it seems to be working.

To all that emailed this week, I have read them and will respond when time allows … and oh yes, I finally added a statistics package to this website that I hope to be able to make public soon.

That’s it …. tomorrows post will be from Beantown!

Oh yeah, why the crow? …. I have no idea, I just kind of liked it!