Chondrosarcoma – ah shit, bob's sick

Just getting around to writing about our Thanksgiving weekend! and boy did we ever have a busy one at that. But let me start off by saying a few things about what I’m thankful for. For one, I’m thrilled to even be celebrating this day … there was a time last year when I wasn’t sure that I’d be celebrating any more Thanksgivings or birthdays … so yes, I’m thankful for just being here with my family, friends and anyone reading this.

Last year at this time, my spirits were pretty darn low and with a grim outlook on the future, I have to admit that I was taking beating from all sides, both mentally and physically. But things have settled a bit since then, and thanks to the un-ending support from friends, family and even strangers, I’ve learned not only to do the “live one day a time” thing, but to also appreciate and enjoy the time I do have and make the best of it… and that’s what I’m most thankful for.

Yeah, I know I’m not going to last forever … but then, who is? It’s been a struggle at times to keep my mind-set straight and moving forward … but I think it’s an important point. Not only for me, but for those around me, and those watching. I want others in my situation to know they can do it too. That’s one of the reasons I wanted to continue to work, accomplish things, continue learning … keep pushing, and not give up.

It’s an important lesson for children too, they need to understand that when you give up, you lose.

It’s a dual weekend for us, Thursday was Thanksgiving and Sunday was my birthday, so of course we combined those into one, long weekend party. I was born on Thanksgiving Day in 1952 so it’s always been a really special time at our house.

Thanksgiving Day (Thursday), Sher and I had a quiet day by ourselves, we made a nice dinner and relaxed a bit … armed with the full knowledge that the weekend was going to be the busy time for our house. Friday we did some of the cooking and preparation so that we could spend time with the kids while they were here … and that worked out well.

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It’s been the better part of a month since I’ve written anything for the blog, not because I’m lazy, but simply because there isn’t much happening beside my daily grind to work, and projects I’ve been working on. However, that’s probably about to change with the holidays coming up, and some of these projects coming to a close.

I find it still hard to believe that’s it’s been a full year since treatments in Boston … can you believe that? It was a year ago this week that I sat in the Proton Center awaiting my turn for the machine, and how they were re-scheduling everyone’s sessions so that no one missed a treatment over the Thanksgiving Holidays.

I remember last Thanksgiving like it was yesterday, and when I look back at the notes I kept during that period of time, I can still see, smell and taste the treatment rooms like I was there this morning. Here’s some of the notes I kept last year on the day before Thanksgiving.

Unpublished Notes: From my notebook, in the waiting room the day of the Proton Center, the day before Thanksgiving 2009:
“Finally, now I can start to recognize a few of the faces of other patients. I don’t know if I’ve mentally blocked that out, or if the treatments are effecting my memory … I’ve always been pretty good with that type of thing but for some reason I never seem to see the same faces while under-going treatment. I come and go basically the same time everyday and almost never see the same people here with me … I find that strange in the sense, the schedule for treatment is so tight, and at the same time it seems that no one is going through repeating treatments like I am …. how weird is that?

Oh man, …. here comes the kids to get their pre-Thanksgiving treatment, talk about depressing. These sweet little things don’t even know what the hell is going on around them … what an awful thing. Some of these kids have known no other life but treatment … the crazy thing is … they’re still laughing and smiling, and although it’s depressing at times to sit here … I can’t help but smile back at them.”

Happy Thanksgiving to all … and remember to be thankful for something in your life … beleive me, no matter how bad things are in your world … there are others (maybe even neighbors), that are not as fortunate as you are.

It’s been awhile since I’ve written about how daily life, from a health point of view is going, so here it is.
As a general outlook, I’ve been feeling pretty. My nutritional intake has increased (strictly due to MM usage) and I’m finally beginning to feel I have a controllable handle on it. Although far from ideal, I no longer feel like I’m slipping backwards.

The effects of proton treatments should just about be winding down. They said it take just about a year for it to do its thing … and it’s been about a year from the first treatment, and although the cancerous tumor remains on my lower spinal column, wrapped around the nerve bundles (which is what makes daily living uncomfortable), it feels different. I’d have to say that it appears to be either completely non-active or if it is active, it’s been severely hampered in it’s attempt to either re-grow or continue to grow.

This is a good thing.

My energy level is not as it once, and probably never will be, but I also seem to be having occasional days when it is pretty darn good. For over a year now I’ve literally struggled with simply staying awake for eight hours in a row, let alone expending any energy during that time, and now it seems I’ll get one or two days a week that I can go to work, work a full day and still have a little “life” left in me when I get home … and that is a really good thing!

Of course our sex life has taken a huge hit during this past year … but even that seems to be on the rise! (no pun intended).

So while things are not back to “normal”, and honestly I have to assume returning to past levels of energy is basically out of the question, I am beginning to feel like a reasonable degree of recovery is within reach, as long as the cancer doesn’t start moving around (metastasize) or return with a vengeance … and only time will tell us that. While I continue to have a few days a weeks that are “off”, I have a few that are “right on” too … and that is yet another good thing!

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One morning this past week on my way to work, I stopped at a local convenience store to grab a quick coffee before heading in. I usually keep my money in my pocket as opposed to my wallet, but for some reason that wasn’t the situation this morning, it was in my wallet. Not being completely awake, I took my wallet out to pay for my coffee, pulled a few dollars out, and half placed it on the counter while the young female clerk worked on getting my change.

The clerk, as she was handing me the change back suddenly smiled and blurted out, “that’s what I want … one of those”, and she pointed downward towards the counter near my wallet. For a moment, or I should say, that it took a moment, for what she had said to register, and then I still didn’t know or realize exactly what she was pointing or referring too.

I politely smiled back, … and then for a moment, my eyes and mind didn’t know where or what to focus on. It was only a split second, although it felt much longer and frankly, it was beginning to feel awkward. Well not really awkward but I didn’t want to appear stupid either!

I’m sure, for anyone that’s ever worked in that type store, that days can go by that are just full of funny, odd, weird, customer situations. I’d think you’d have to have a good sense of humor to work in the average convenience store .

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Last month I signed up for a Netflix account.  It wasn’t the dvd rental part of their service that interested me, but more the streaming aspect. It was recommended by a friend and after thinking about for a few days I decided to try it out. They had a thirty-day free offer … so hey, what do you have to lose? You can watch just about any movie, documentary, TV or anything else ever put on film … instantly, and on just about any device that connects to the internet. As a matter of fact you can connect up to six devices at once if you so desire!

In general,  I don’t watch much television besides the news and that’s  not for more than ten minutes a day or until I get pissed off by political bullshit or the repetition of three or four news stories that the prime new stations insist on repeating over and over and over until you begin to believe that it’s important. Why they do that I’ll never understand, there’s so much happening in the world that could be reported on.

Actually, I hate to even get started on this topic because I really feel like our “news (if you can still call it that), is so heavily censored that I might as well be watching Sponge Bob. Not censored in the sense of the conspiracy minded, or our government (although that’s certainly possible), but censored by the news programs and stations themselves simply by covering so few items a day, and by injecting so much opinion.

Yeah, I know, … I was talking about NetFlix … let’s leave “news broadcasting” for another discussion before I get really carried away. Besides, the telly is often on in our house. Our pets (cats and dog) seem to be attracted to it, and certainly Alberic enjoys his occasional show and video games, and Sher watches a few Soap Operas …

NetFlix seems to be offering a pretty good deal if you’re a watcher, or even if you just occasionally watch something.

There are several different levels of accounts to choose from. The main difference between them is the number of DVD’s you can get mailed to your house each month. There’s no time limit to how long you can hold on to the DVD, but as soon as you return it (pre-paid mailer included), your next choice on the list is on the way.

The accounts work in two ways:

1.) You can keep a running list of DVD’s to be mailed to you.

2.)You can simply stream the movie over the internet to your computer or TV.

You get access to both.

It pretty darn simple to do (you don’t need to be a computer geek) and their website is very easy to use. As for variety of things to watch … it’s almost endless.  The genres are extensive … even the Foreign Film and Classic categories are packed with lot’s of choices.

So, next time you feel like watching a movie or some television show without commercial interuption (although you can always hit the pause button while you make the popcorn), try it out. Great if you have kids too!

I do wonder though … will there ever be advertising added? For those of you who remember the history of television goes like this.

At first we had simple broadcast television, they sold advertising to make money and stay in business … that makes sense … right?

Then along came Cable TV, their big initial selling point was that there would be no advertising because if you paid for the service, that fee would be enough to keep them going and growing. Not sure how long that lasted but it wasn’t very long.

Cable TV has now degraded to the point that it’s worse (for the viewer), then it’s predecessor … the very thing it was originally trying to conquer. Nothing but the very lowest budget reality shows, info-mercials, and News stations that get most their news from websites … they barely have reporters any longer … and paid staff that provides research.

Basically, if it weren’t for the internet connection … I wouldn’t even have it, and that’s barely an acceptable speed when you compare it to most of the other technically advanced countries in the  world. We’re on the bottom rung of the ladder … and, we pay way too much.

Now, along comes Streaming TV and Movies doing the same thing … no commercial interruption, dirt cheap, and oh, so convenient … but for how long?

Take advantage of it while you can … I’m sure it’ll change.  After-all NFLX is on the Exchange and it’s investors will be demanding higher and higher profits, pushing the company to make more and more dollars  … and so the cycle continues.  

Hmmm … frustrating isn’t it? It seems to all boil down to bandwidth issues and how our government (meaning our tax dollars) has already paid for most the infrastructure, yet big business continues to profit from it and in a massive way!

Think about what you pay monthly for access to bandwidth, of one sort or another. Cable TV, your cell phone, your smart phone,  maybe you’re like me and have a GPS service … go ahead, add it up … tell me it’s not expensive … and tell me you can live, work and survive without it. That’s getting harder and harder to do too.

Gee … where have I heard all this before?

Hey, in the meantime … make some popcorn and give NetFlix a “go”, it’s a lot of fun and it’ll help keep your mind off of politics and world  issues …  and enjoy the show, I’m watching Doctor Who tonight!