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Memorial Day – Quick Update: Monday, May 31, 2010

May 31st, 2010 No comments

Just a real quick note:

 We had a great weekend, along with perfect weather. We managed to get quite a bit done around the house, and a bit of entertainment time too! It was a much needed weekend. I even managed to catch up on some much needed sleep … and that was fantastic to say the least.

This week is going to be an exciting and busy week. Tuesday and Wednesday it’s work where we’ve been extremely busy, and then on Thursday we take off for Boston for a graduation at M.I.T. and a little bit of celebrating of Alberic’s twelfth birthday.  Hopefully with a trip to Boston’s Science Museum in there somewhere!

I’m feeling good, and looking forward to the trip to Boston. Hoping that getting around the city won’t be too difficult and this fantastic weather holds out for this coming week. Alberic is looking forward to seeing and being in some multi-story building. He’s always had an interest in city architecture, this’ll give him a chance to experience it!

Hopefully, I’ll get a chance to do a bit more writing before we hit road. I hope all you had a good holiday weekend too … and let’s all keep in mind what this holiday is all about.


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Sleepy and Me – Pushing Your Limits: Thursday, May 20, 2010

May 20th, 2010 2 comments

Sleepy and Me – Pushing Your Limits: Thursday, May 20, 2010

Sleepy-1The 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 neverSleepy-3 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.

Sleepy-4BP 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”.

Sleepy-2


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Basic Updates: Monday, May 17, 2010

May 17th, 2010 No comments

Finally! the weather is just awesome here in Vermont …

For the first time since last summer I did some real yard work this weekend … well, I cut the lawn, and to be honest I wasn’t even sure I could do that until this weekend. Early Saturday morning I headed out the barn and started the lawn tractor up and took it out. The yard was full of sticks, rocks and other effects of this past winter, Sher walked around first and picked up as much as she could before I did any actual cutting. Team work they call that … and it worked out just fine.

We’ve made plans to put a small garden in this year too. Last week our friend Norman E. came over and did the tilling of the garden (thanks Norman), and over the next few weeks we’ll start putting in some tomatoes, herbs and just a few other things. We’re keeping it small this year so that our upkeep won’t be too intense.

This week I also finished swapping my Windows XP computer for a new Windows 7 machine, so for those that recently emailed me, be aware that it’s taken me more then a week to move all my files and programs from one machine to the other. Also, Windows 7 doesn’t really come with an email program, so I chose to use Thunder Bird email program.

Alberic returned from camp this weekend and appears to have had a great time. He’s growing up fast. Just the other day I looked at him sitting on the couch playing RockBand 2 and was amazed at how much older he seemed suddenly. Playing guitar, drums and even singing, which by the way, isn’t all that easy for an eleven (two weeks away from twelve), year old to do.

In two weeks we’ll be taking him (Alberic) to Boston for Mike’s graduation at MIT … I’m sure he’ll love that trip. He always wants to head to the city. Any city, I think he finds it exciting and very interesting to see the way other people live.

Work has been very busy and a few of the projects we’ve been working on are coming to a head. Which is great really, I love to see projects come to an end … especially when the weather gets so nice.

Personal Updates:
Somehow I’ve managed to gain a few more pounds back, which is awesome. I’m almostback to the weight I was before treatment and I’m guessing that’s a good thing. In general I’ve been feeling pretty good except for the exhaustion thing and I’m working on that.

I had been drinking a lot of coffee during the day and at work and some at home … but, over the last few days I’ve tried to keep it down to two or three cups a day and I believe it’s making an amazing difference in my energy level. Sure, coffee gives you a boost at the time you drink it … but then, there’s a big crash afterwards. I’ve found that drinking less coffee and more water is making a difference.

So while my energy level is still low, it’s on the rise and hopefully will continue to improve until I feel like I can get a full day in without the constant need and desire to nap. I don’t expect to rebound to the level I once was because of the medicine I’m on … but I truly believe I can do better than I am. Hey, it’s been a full four months since treatments … so it’s about time.

Although at the time of treatment they did tell me that the energy loss and other effects of the treatment could last for up to a year! Hopefully this won’t be the case.

So all and all, Sher and I have been doing pretty well and are adjusting to our new lifestyle. In July, I’ll be returning to MGH for another round of scans and a visit with Doc Delaney, and at this point I don’t have much to report.

Most of the problems I’ve had since I think I can attribute to “pushing” myself past the point that I probably should … but that’s me, that’s my way and I clearly understand the physical cost of pushing the limits. Actually, I’m still finding the limits and trying to adjust to them.

With a little luck this cancer will be calm for awhile and allow me to get some stuff done and begin taking the time to enjoy a little bit :-)

Wonderful to have some free time to write too!

One last note:
I want to wish my friend Linda all the best with her treatments. Although they aren’t quite the same as I had, we still have a lot to relate to in our experiences. Hang in there Linda … I’ll try and bring some more lemon drops this week!

Oh and thanks to Loiuse P. too always wonderful to get your emails!


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This May Qualify as a Rant: Wednesday, May 12, 2010

May 12th, 2010 No comments

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…


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The “Real” Mother’s Day Proclamation (1870, Boston): Sunday, May 09, 2010

May 9th, 2010 No comments

This is what Mother’s Day was supposed to be all about. Of course our culture has commercialized, monitized, and warped the meaning to be about something else, or simply to hide the true purpose. Read it, read it twice and understand what it says. Mother’s Day was originally started after the Civil War, as a protest to the carnage of that war, by women who had lost their sons. Here is the original Mother’s Day Proclamation from 1870, followed by a bit of history (or should I say “herstory”):
Happy Mother’s Day
Bob

Arise, then, women of this day! Arise all women who have hearts,
whether our baptism be that of water or of fears!

Say firmly: “We will not have great questions decided by
irrelevant agencies. Our husbands shall not come to us, reeking
with carnage, for caresses and applause. Our sons shall not be
taken from us to unlearn all that we have been able to teach
them of charity, mercy and patience.

We women of one country will be too tender of those of another
country to allow our sons to be trained to injure theirs. From
the bosom of the devastated earth a voice goes up with our own.
It says “Disarm, Disarm! The sword of murder is not the balance
of justice.”

Blood does not wipe our dishonor nor violence indicate possession.
As men have often forsaken the plow and the anvil at the summons
of war, let women now leave all that may be left of home for a
great and earnest day of counsel. Let them meet first, as women,
to bewail and commemorate the dead.

Let them then solemnly take counsel with each other as to the
means whereby the great human family can live in peace, each
bearing after their own time the sacred impress, not of Caesar,
but of God.

In the name of womanhood and of humanity, I earnestly ask that a
general congress of women without limit of nationality may be
appointed and held at some place deemed most convenient and at
the earliest period consistent with its objects, to promote the
alliance of the different nationalities, the amicable settlement
of international questions, the great and general interests of
peace.

Julia Ward Howe
Boston
1870


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