Chondrosarcoma – ah shit, bob's sick

Wow! … here it is Friday again and I can honestly say I have no idea where the heck the week went. I do remember yesterday (Thursday) though, Sher and I, made the long trek to MGH in Boston for my first testing and scans since the original onslaught of proton treatments last fall and summer. Well, six weeks ago, I feel like I’m just over that adventure, and here I am voluntarily going again. We started out at three in the morning and after a few cups of coffee, hit the road before four.

The roads were in reasonable condition most of the way, with only a few spots that required slower and more cautious driving. Arriving around seven, we searched out the Founders Building (I’d never been in this building before) on the MGH Campus, and located the Radiology Departments, MRI section.

If you’ve never had a full MRI (Magnetic Resonance Imaging) before, I’d suggest you don’t run out and try to have one … they’re nasty. Especially for those that don’t appreciate small, tight places … you know, that wonderful claustrophobic feeling you can get now and then, well ten-fold that, and you begin to understand the feeling that comes with an MRI.

The machine is basically a big, long, narrow tube that has a moveable shelf (that holds your body) and it slides you in and out. Sounds simple enough … and in some sense it is … but in another sense it’s a complete nightmare.

The time you’re actually in the tube varies (I assume) from person to person, but for me it was about forty-five minutes, in which during that time they have an IV tube hooked up to you and they inject different drugs at different times while the machine is running.

Now during this adventure, you can not move … not even a little, not even flex a muscle, or take a deep breath. If you do, the test starts over and the forty-five minutes does too. To give you a more realistic view of this test, you can add to this that the machine is one of the noisey-est machine you’ve ever heard. It bangs and clangs around as if it were literally falling apart … even with ear-plugs, the noise is over-whelming even for an experienced MRI-er like me. As you can see, there isn’t much wiggle room.

This thing would make one of the best torture devices on the planet if they needed it … as a matter of fact, I’m surprised they haven’t used one for that. Besides, all the MRI’s have the strongest straps to hold you in and on, as you go for the ride of your life! And if you have an itch on your nose, foot, leg … anything, forget it … you’re a goner.

A lot of folks have to be sedated to get through these … they can be tough. It’s definitely not something you want to have a lot of coffee before setting out to do. But me, being the cool experienced idiot I am, never except the sedatives they offer. I don’t know why … but I always think I can “handle” it, just before sliding in … and I’m always sorry afterwards … this week was no exception.

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This is no doubt, going to be a busy week and it appears Monday will be no exception with all the snow we’re supposed to be getting. It’s snowing now in Vermont and is expected to continue through till the morning. That’ll make driving to work a special pleasure for sure.

I have a lot projects going on at work this week, and I’m feeling bad already for having to take more time off in order to return to Boston for tests and scans. I’m hoping between the snow tomorrow and taking off Thursday that I can complete some of this stuff in a timely fashion.

Tuesday is the radio show (which I’m almost prepared for), and Wednesday I need to bring my car in for it’s service check up and Thursday I’m off at 4am, heading for MGH in Boston! Yikes! … is this all going to happen?

I’ve also got a handful of jobs for Scifillian to complete before Thursday, and a few personal programming projects that are driving me crazy because I can’t seem to find the time to complete them. I guess once again they’ll be pushed to the side for more important and pressing matters.

Speaking of personal programming projects, I have a great little database that beginning to drive some of the facts behind or on this web site … like the Health Journal and the Weekly Cancer Scale. One of the reasons I wanted to get those items into a database was so that the history of how this cancer works on my body is recorded. Sometime in the future we’ll be able to look back and see when changes, for the better or worse, occurred.

As an example, each day when I fill out the Health Journal, those numbers are recorded in a database. At the end of a week, I can look at it and see what kind of week I’ve had, and the same thing goes for a month, and six months … and a year. That’s the only way I could think of to record the changing situation, and be able to make sense out of it later. Hopefully, it’ll be useful data somewhere down the line.

But it’s not complete yet, and as anyone that builds these types of databases knows, it takes time and thoughtful concentration to get it right, and developed in a way that useful data can be queried for results that are meaningful. Maybe we should leave this for another post about collecting data on living with cancer. Really, it could be used for collecting data on any illness if fact.

Recording this kind of data is difficult because so many of the things you feel are so hard to explain or describe … but it’s getting there, simply requires a lot of tweaking and thinking it through.

Not sure how I’m feeling about the trip to Boston on Thursday. On one hand, I feel like it’s a good thing to go and get re-tested and scanned so that I’m aware of where the cancer stands at this point in my life … on the other hand, do I really care? and is there anything they can really do about it anyway.

It was made very clear to me, after opting for these treatments, that if they failed, there wasn’t much else they could do for me … and that is still the case. So I question even going through the motions of testing and scanning … for what?

The truth of the matter is, it isn’t going to make a “hill of beans” of a difference, whether or not the cancer is fully active or not, for the moment … nothing really changes. It’s lingering in my system and can turn itself on and off at will … like it has a mind of its own, while it controls the switches that allow me more or less time. The doctors have no more control over this then I do in a sense.

I honestly feel there is very limited value in doing this. Another angle to look at this by, is that the tests themselves are so destructive to your body, that it’s hard to justify doing them on a healthy person let alone someone that’s already suffering. If you think about it, I’ve been subjected to more radiation, then most people have in a dozen lifetimes. As a matter of fact, if you add it all up, I bet I’ve had more exposure to x-rays and radiation, then an entire small town’s population worth of people. That’s insane! … do I need more?

When you get an MRI, CT or PET scan, it lays a lot of radiation in your system … don’t get me wrong, these are wonderful tests to see if there is something wrong. When they’re first searching to find what’s wrong with you … but at this point of the game, I have to question their value … do I really need more exposure and what good, is likely to come out of it anyhow.

Think about it. It’s one of those things we don’t get to read much about, but it’s there and it’s reality. Ask any oncologist, and he’ll tell you there isn’t any cancer or tumor they can’t kill with enough radiation. The question is … can they keep the patient alive long enough during the process.

Well, unfortunately it’s too late for me to get into these thoughts … but we’ll touch on them again after this week. It’s midnight, it’s snowing like crazy and I have to get up in the morning and get moving quickly …

I’ve started a new category of posts today that will be published, but they will not appear on the front page of the blog. Not because I don’t want anyone to read them but because I’m not sure they really belong on the main page and there is likely to be a lot of short posts in it.

The new section of the site is called Health Journal, and it’s purpose is for me to keep track of how I feel both physically and mentally on a daily basis. This is important to keep a clear record of.

At this point in the game, I want to keep track of my medication use, weight gain or lose, depression, stress, appetite, basically all the things that on my “Cancer Scale” (right-hand column) but with an explanation of why these things may have changed.

I wish to keep an eye on things like how many days I’ve felt “down in the dumps”, or “defeated”. How many times I needed a higher doses of medication to get through the day. Hopefully, this will reflect some light or advance notice if I start to slip into a funk of some sort.

It may sound ridiculous that you wouldn’t know if you were getting depressed or stressed … but sometimes you don’t … at least I can’t always tell.

Anyway, I’m going to try this and see how it works. This way I’ll have a hopefully daily, or almost daily record of both my mental and physical state. May end up to be useful and/or interesting. Again, these will be short, direct posts and will not effect the front or main page of the blog. Kind of like a quick diary entry.

You can read the posts by looking down the right-hand column and finding the section that says “Health Journal”. All the other categories, are and have been, published on the Main page as regular posts.

Here in southern Vermont we got about a foot of wet snow Tuesday. I was able to work from home on a few things that I’ve neglected for weeks if not months, and it was comfortable and wonderful to work from my own environment. I know some folks have a hard time working from home, but I seem to thrive on it. My office here has been set up for years and everything just seems to flow in a way that makes accomplishing tasks fast and easy. I have excellent work ethics and prefer working in a place where everything is within short reach. Especially now-a-days J

Today was actually a pretty good day all ‘round. I worked when I wanted, slept when I wanted, and ate when I wanted … what the heck else could a person ask for ? J

As soon as the burns on my back begin to heal, I plan on heading into the office for a few trial days and see how it goes. The only real possible problem I can see at this point is being able to hack through 8-9 hours straight, without resting. I’m still experiencing tiredness from the radiation, but I assume that will further dissipate rather quickly. Besides that, I have been working really odd hours, sometimes early in the morning, sometimes late at night … whenever the urge hits me … I do it. I need to try and get myself back on a reasonable schedule again.

One of the things I’ve been thinking about lately is, now that the treatments are over, and most of the hassles are calmed down, what things in life have changed significantly enough, that I need to be concerned about, and how do I deal with each of those problems.

Rose, a dear friend from Sweden, emailed me the other day and (amoungst other things), quoted this old saying, “Yesterday is history, tomorrow is mystery, but today is a gift. That’s why it’s called the PRESENT.” … Get it? Gift, Present … she’s right, that’s exactly the way I’ll be looking most things.

You see, I haven’t really given much thought to the idea of living with cancer beyond the point that it’s been diagnosed, treated, and now it’s about to be watched. Just the idea that “it’s being watched” tells us something, and tells us something important to be understood about these cancers, the treatments, and moving forward with life. What it basically tells me is that, … dealing with cancer is not over yet, and neither is life. They may have changed, but they’re not over.

That being said, it’s now time to start calculating the actual damage done and consider what options I have for each problem that remains. It makes sense to me that this be done in an organized fashion or at least as organized as I can make it considering I have no experience in the field of living with cancer. No one does, I really don’t know what problems lay ahead of me. But everyday I, and Sher for that matter, continue to learn and understand what it means to “live” with cancer.

For example, yesterday we figured out that removing the snow from our doorways and paths wasn’t going to be as simple as it used to be. Before, I used to go out and hand shovel the entrances and doors after the snow plow dude came and did his thing. Well, yesterday we had to do it in little bits at a time. Sher did a bunch because I’m still not supposed to do any heavy lifting or moving. Well, this presents a problem in life too because about every twenty minute there’s stuff to move around, especially this time of year. Just the act of getting all the holiday decorations down from the high shelves in the barn was an event.

Obviously, I’m going to have to change around the way that things have been done in the past and find new, simpler ways to do them.

“Yesterday is history” … well that’s true. What good does dwelling upon yesterday do for you? Nothing. … I got this cancer, made my decision to go with proton therapy, went through the therapy, and here we are. I’ve got no problem with that. Yesterday is as clear as a bell to me and I wouldn’t change one moment of it.

“Tomorrow is mystery” … true again! Who knows what’ll happen? None of us know, and maybe we’re better off not knowing. In my case, the cancer could be back in force in a matter of weeks, or it could take years for it to return. It could also be that I live to be an old man while the cancer takes its time to rebuild, and attacks me again when I’m eighty. That’s the mystery for me … what’s yours?

“But today is a gift” … now who can argue with that? Today “is” a gift, at least for me it is, it should be for you too. If it isn’t then I suggest you start looking at “today” as a gift, instead of “just another”. They are gifts, we just don’t realize it until some are taken away. In some sense, that’s exactly what happened to me. Some of my “todays” have been taken away, we just don’t know how many. Maybe. Maybe that’s mainly if we don’t believe in destiny.

Maybe this was all meant to be, and it is my destiny and therefore, these “are” my days, and none have been taken away! Only given (tick, tock, tick, tock, tick, tock).

Well, however it is, and whichever way you choose to look at it, it is at this present time, that I choose to start thinking about basic survival tactics for not only myself, but for my family too.

So from this point forward, we have a different challenge in front of us.

Good Morning, Good Morning, Good Morning: Monday, December 07, 2009

Nothing to do, to save his life, call his wife in.

Nothing to say, but what a day, how’s your boy been,

Remember that song? What a great tune, for some unknown reason that’s what I woke up singing in my head this morning!

Well, off we go for the last week (for the time being) of treatment. This should be my last drive to Boston for at six weeks. I need the break. You know, after three and a half months of daily treatment, I am in need of a serious break. I know a lot of good has been done and I’m definitely aware that some time has been bought, but I tell you something … it’s not an easy path to follow.

This week I’ll be receiving all IMRT treatments. Honestly, these are the worst of the worst. These are the treatments that make you feel sea-sick a few hours after getting them and tends to last for days … but you know, I just don’t care about it anymore. I want to finish this up and begin to put my life back together, even if for a limited amount of time.

Now what I mean? … I’m sick of being sick J . Besides, I have a lot things I want to do, and the holidays are right around the corner, and there’s always lot’s to do there. I haven’t even thought doing any holiday shopping, or anything like that.

Anyways, with a little bit of luck I should be back in Vermont sometime late Wednesday, and I plan on sleeping most of Thursday and Friday because the treatments will still be running heavily through me … but after that, I hope to hit the ground running.