Chondrosarcoma – ah shit, bob's sick

Today was a busy day all around. We interviewed 3 people for tech support, in which one of the lucky 3 will replace me at work while I’m in Boston. I had great lunch and a wonderful chat with my buddy Ray at Louie Louie’s Lebanon, NH. And, passed a new Scifillian customer to my son in Florida. That’s not counting the regular work done at my job.

I have an appointment 3 pm. Friday, with my primary physician to discuss long term use of painkillers, and other possible alternatives in preparation of completing the proton treatments.

This makes 3 days in a row that I’ve been feeling reasonably well. I also feel like I’m getting a little bit of work done, and that’s a great feeling.

I was thinking about all the everyday life situations that are or have been affected by cancer to write about. You know … my diet has somewhat changed, at least most certainly Sher and I are taking turns cooking now. I used to cook dinner most every evening, but that changed and because of that, my diet has changed. I also seem to require much more sleep, almost double to what I have in the past. I also find shaving a challenge. It’s not the actual act of shaving that’s difficult, it’s the angle that I have to lean over the bathroom counter in order to see closely into the mirror that is painful. Even though it’s a very slight bend, it’s enough to set off the pain in back.

The sexual part of our relationship is also something that has changed. Maybe that’d make a good topic! I mean it is something that does change and I don’t know other people may have experienced the changes. I did some research on the topic awhile ago and couldn’t find any “real” comments on it. I think it may make a good topic to write about in the future. It is a topic of interest, and real thing that people with cancer have to deal with and experience.

Even the simple tasks around the house become more and more challenging, and I mean simple things … like walking the dog and taking care of the cats, taking out the trash … you name it, it’s changed.

Sher and I are working all these changes out … but it takes time, to trade off the jobs that are required to run a house and figure out new ways of trying to help each other. New ways of survival, is the key to successfully dealing with this.

Even keeping this blog is time consuming, and uses time that used to go into something else. I’ve all but ignored preparing for winter on the outside of our home, which makes me truly concerned … but at the moment, there isn’t really much I can do about it. I’m worried about who is going to shovel all the snow around the barns, garages and steps. How we’re going to maintain clean driveways and paths. Every winter past I dug paths through the woods so that Sher could bring apples out for the deer. I fear many of these things will change.

This reminds me of that old Simon and Garfunkel song, Hazy Shade Of Winter.

Hang on to your hopes my friend
That’s an easy thing to say
But if your hopes should pass away
Simply pretend
That you can build them again

Look around
Leaves are brown
And the sky
It’s a hazy shade of winter

Things are beginning to shape up. I plan to make a precise itinerary over the weekend sometime. At the moment, I plan on leaving for Beantown sometime late afternoon Monday to try and get a bit settled. The first prep work will be done Tuesday morning at 9:15am and everyday there-after. I’m not exactly sure where I’ll be staying the first week, but most probably in a small motel just outside the city.

Tomorrow at work I partake in 3 interviews for someone to replace me for at least the 3 months I’ll be gone. I feel good about that and am glad to see the company I work for finally getting down to doing this.

I’ve felt pretty well the last few days. Funny how that works though, the pains and nausea seems to come in waves and at random times. I can never tell when it’s going to hit or why. Something seems to trigger it and once it gets going, it seems to last for days and then subsides again. Really difficult to explain. I have noticed several new pain areas this past week or two. One of them seems to be right in the middle of my back, as if a vertebrate or something was damaged or is getting damaged. It’s definitely a bone thing as opposed to a muscular pain. Here’s the thing though, the muscle pains are fairly easy to deal with. You take a pain killer or two, and within half an hour or so they begin to lighten up. Bone pain is another matter, once that gets going there is no controlling it, or fighting it off with pain killers … you simply have to ride it out. Morphine helps a bit, but doesn’t come close to stopping it. I guess if you took enough it might, but I’m trying to remain functional too.

Another spot that has reared it’s head up in the pain department, are the two muscles on either side of my spine, about midway up my back. Damn they get sore. Laying down doesn’t seem to help, there is no comfortable position to be in.

My guess is that these deep bone pains are the pains of bone cancer. Although I have no way of really confirming that, except to say that they are not your typical “normal” type aches and pains. This is really the first of this I’ve experienced. I guess I should consider myself lucky in a sense.

Back to Beantown – So, for a start, I’m going to rent a room in a place called Watertown until Thursday. This way I can get my treatment done Friday morning and head back. Now let me tell you, Watertown is not an exciting place to be, however it is, perfectly located for what I want to do. It’s about 15-20 mins. outside the city, so the prices are reasonably affordable and it’s pretty quiet at night, so sleeping is not a problem. There are several little restaurants in the area that are open late, and most of them will deliver to the motels. So not too bad of a deal.

After that, I’ll be hopefully staying out on Nahant with a little helps from my friends!  Sounds like a plan … right?

It’s 10:30 pm and I’m just sitting down to write this evening’s post. I’m also eating a big slice of fresh, homemade Apple Pie that someone so graciously brought by the house today! It’s awesome … thank you so much . You ought to be selling these pies!

It appears that most of the Boston rooming issues may have been solved … and that is awesome and not a moment too soon.

I’ll be re-publishing a new treatment schedule towards the end of this week. With a few important changes. Hopefully, that’ll be the last change in scheduling I have to deal with.

Think about this … next week around this time I’ll be heading towards Boston for the first set of Intensity-Modulated Radiation Therapy. I hope to be posting daily about these treatments! Yikes … the time is getting close.

Since I started this blog, many folks have mentioned that they thought the idea of recording my initial conversations with the doctors was a great idea. Well, if I may say so … I thought it was a great idea too. I can’t tell you why I even thought about at the time (maybe because I’ve done a lot of radio work and am accustomed to recording everything), but I’m really glad I did it.

I thought I’d run into resistance from the doctors and nurses etc, but it was really quite the opposite actually. They all seemed to appreciate the idea, which of surprised me until I thought a bit deeper about it. One doctor even told me it was common practice at another hospital where he had worked. Although I don’t know that they gave patients a copy of the conversation, it may have been for the sake of assurance in case something came back on them later on. Others thought it was a good idea in general, and yet others thought “wow!, I ought to be doing that”. So it was universally excepted as a good idea.

I didn’t hide it (like in my shirt pocket) or sneak it in to the doc’s office. I was very straight forward and asked each doctor if he minded before turning it on. I explained that I was having trouble absorbing all the info that I was getting in 2, sometimes 3 appointments per day. Even on days I had just one appointment. I mean, damn, it’s important stuff to remember, especially with a life threatening illness. Don’t let them tell you no either. If they don’t want to be held to their word, then the conversation probably shouldn’t take place. But be nice about it … they like the idea.

Besides putting those conversations online for anyone to listen to, I myself have gone back to every recording several times to listen again and make sure I heard what I heard. During discussions with Sher, we have referred back to different recordings, because both of us thought we heard him/her say something that was or wasn’t as we remembered.

So they have come in handy. Also very important, is the fact that the idea of my getting proton treatments even in the most remote sense, was due to these recordings. Remember, when I had the recording on line for only a day or two. Bill N. (Florida) and his wife listened to them and contacted me about how the doctor basically “blew off” Sher asking about proton. Something neither Sher or I caught at the moment. So I have a lot of thankfulness for these recordings and the purpose they have served has been multi-faceted.

So I thought I’d explain in simple terms how I did this, and that the cost of doing it, far outweighs the importance.

I didn’t originally buy the recorder for this purpose, but I would have easily spent the $49.00 – $69.00 to do it. I originally bought it to record conversations with musicians, artists etc etc. for our radio shows. I bring home the recordings, do a little editing and broadcast them. In the case with the doctors I didn’t edit or clean up the white noise that all recording has because I wanted them to be totally authentic.

The recorder I used was the Olympus, Digital Voice Recorder – WS 100. There are plenty of them on the market, and this is far from the best one available … but for the price, you just can’t beat it. It records things in .wma format. I going to stay out of the technical stuff here for the sake of making this post a reasonably length. WMA format is Windows Media Player, which most computers have. I did convert them to .mp3 format before putting them on line, and you can do that with a simple piece of free conversion software found anywhere on the web. Just Google, “wma to mp3 conversion” and you’ll find tons of free options.

The recorder itself is small, extremely lightweight and can record up to 37 hours of conversation, music or whatever you’re recording. When you first listen to it from the recorder itself, you’ll think “what crappy quailty” … but, if listen with the little headphones that come with it, or play it through your computer, you’ll soon realize that the quaility is quite fine. OK, its not a recording studio quaility, but its just about good enough to do anything you want with it.

It connects to a USB port on your pc and works basically in the same way most cameras do. It’s simple. I don’t work for Olympus, I don’t sell these recorders, I’m simply saying this is what I used and damn if it didn’t nearly save my life, or at least supply me with an option to “buy” a few more years.

If you have a medical situation similar to mine … please consider it. Don’t depend on your memory.

Not much happened today on the news front. Unfortunately, nothing at all happened on the Boston living quarters either. Time is getting close, only nine days left to find something … but I have faith something will come through. Anyway, not worth stressing about, too many other things going on.

Sher took Alberic to the store today and they picked out a travel bag (for lack of better words) for me. Which is great because I always need something to put all the small stuff in. Like my iphone, pocket knife, wallet (not in my back pocket anymore), meds, all that kind of stuff. It was a perfect sack or back pack … just perfect for moving around the city. Also grabbed some lemon drops for nausea …. they work like a charm!

As I go back and re-read things on this blog, I keep finding spelling errors L . Well, I’ve done a little test and realize, that the time of evening that I’m usually writing posts, is the same time that the meds are often kicking in. So, that’s not an excuse for poor spelling … but it is a great excuse for not being able to operate my spell checker!

Alberic and I played Tiger Woods Golf Game today …. Of course he beat my ass something fierce, but we had fun! Al shot almost a par game … I shot 23 over, yikes, I suck!

I heard from a friend (email) in South Carolina today. I’m so glad she wrote. I used to work with her when she lived in Vermont. It was great to hear from her. I appreciate that.

My work schedule may be changing due to schedule changes in the scanning procedures at MGH. They want to start a few days early, which is another reason I’m in such a freakin’ hurry to find living quarters.

Thanks to all the folks that signed up for accounts today! … this was our biggest day yet for new accounts!