Chondrosarcoma – ah shit, bob's sick

Chondrosarcoma Update:
This past Thursday (July 22, 2010), I returned to MHG in Boston for some follow up scans and tests to see if there have been any changes in my cancer condition.
We left Vermont about eight in the morning and took the three hour our drive at a leisurely pace. I left a little extra time for the trip because often there’s road construction on route, especially in the summer. We arrived with about half-hour to spare but by the time we parked and found the Department of Radiology in the Founders Building at MGH that spare time was just about gone.

The first test was a complex MRI (one of my personal favorites) that involved setting up an IV with mix of several solutions for reading levels of activity in the tumor region of my spine. It’s a long test, about thirty-five to forty minutes and they do several passes. First pass is to get an accurate measurement of the tumor itself … like actually measuring with ruler, height, width, depth.

Then they inject you with a contrast so that blood movement (or non-movement) can be measured accurately. The next injection is to see the amount of oxygen that the tumor is (or is not)consuming, then one for the amount of blood sugars that the tumor may be consuming.
During all these scans … and I mean the entire time, you can’t move a muscle or the process basically has to start over. It’s important because when the Doc reads these scans they have to line up with older scans, and with each other. This is the reason they tattoo’d me in the beginning … so that alignment can always be reproduced. Any movement does two things. One is of course it makes it almost impossible to line up with other scans and secondly, the images blur when you move.

So if you want to get out of that tiny little tube … you’d best be still. It’s a tough one because it’s kind of like laying down in an empty toilet paper roll made out of metal! It’s tight (not for claustrophobics), very noisy, and there seems to be an inherent lack of air movement. Not a comfy situation. Oops, and can’t fall asleep either (although I’m not sure anyone actually could because of the noise). People tend to move in their sleep and again, that’s not a good thing in this situation.

My guess is that I spent about an hour and a half to two hours … not fun.
The next thing was to get a series of chest x-rays and a few other what seemed to be random bone and joint pictures. The purpose of these is to check and see if there has been any cancerous metastasis. Basically, they’re looking for cancer they may have spread or took up residence somewhere else in my body. The most common spots for this to occur is in the lungs, chest (especially the rib cage), and joints. In chondrosarcoma, the joints are important areas to keep an eye on.

By the time I was finished with that I was ready for some fresh air. We took a walk outside for a few minutes and looked at the new building MGH is almost finished with. When it’s finished it’ll house most of the equipment I’ve been talking about since the beginning of the blog with the exception of the actual proton machine which requires the better part of a building on it’s own.

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Good news on the radiation burns! The skin has finally began to crack, peel, and be replaced by decent new pliable skin underneath. This is awesome because it has relieved a lot of pressure that has been on the wound since the beginning.

Several layers of skin had lost it’s elasticity and there-fore kept a constant stretched, pressure directly over the tumor, causing a degree of discomfort. Now that skin is gone, the associated pain is mostly gone too. That’s good news for me.

It helps makes just about every movement, less painful. So while there’s still pain involved in movement, … it’s not what it was. For me that means there’s one less constant daily pain to deal with. What a relief! It also means I can just about begin taking advantage of the pool at the Health Club … and that, I’m excited about. More comfort in driving, walking, sitting and everything else.

I also want to mention that this is the forth day in a row that I’ve woken up feeling pretty good. That may not sound like much to you, but for it’s been months since that’s happened. While, things will never be the same as they were … I’m feeling a lot more positive about the future of living with this.

In other good news, it seems our area has missed most of the East Coast Blizzard of 2009. While they say, all around us has encountered record breaking amounts of snow, Vermont has managed to miss it! That’s OK with me . As much as I enjoy the winter weather, I don’t feel bad about missing this monster storm!

SPOXTalk is gearing up again. On New Years Eve we are hoping to do live broadcast, with guests in the studio. Weather permitting, we expect that some of the Panthers Comedy Group will be joining us live! Beginning at 8:30pm and running till Midnight to ring in the New Year, we expect this show to be full of good humor and seasonal jocularity. The phone lines will open too. Oh boy, here we go! … right back into politics!
Starting the Tuesday after New Years we’ll be starting our regular weekly program again and also be playing DRS Dave’s, The Prog Show” showcasing a great variety of tunes from the progressive music movement.

I spoke with Ollie on the telephone today and that was, as it always is, a pleasure. We always have a spirit lifting conversation. As soon as I’m feeling my “oats” a little more I want to take a drive down and see him:-).

I’d also like to thank MicroPack of Scotland and the US for joining our Scifillian Server services. Welcome aboard folks.

In yesterdays post I mentioned that we were listening to Seasonal tunes, Holidays tunes … you can listen to the same mix we were by going to StreamingOldies.com and clicking on the button that says “Christmas Stream”. You don’t need to be a member to do this and it’s totally free due to the generosity, and holiday spirit of the site’s owner. If you’re a music affectionato like me, there is also some absolutely great writings on the site about Rock and Roll History and bunch of other topics that’ll rock your socks off. Believe me, it’ll help raise your holiday spirit.

If I sound a bit more upbeat on this post then I have lately, it’s because I am. No, I’m still sick, and nope… there’s still no cure for my particular cancer … but I am in higher spirits as I re-group from the treatments … and that’s a good thing.

One last thing before I sign off … click the read more
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Well I’m four days home … and man, I’ll tell you, it still feels good, better then ever. I’m not going to go into detail of how I’m physically feeling today because you can now read that in the Health Journal section (which does not publish on the front page of the site), anytime you like, but I will say that today, physically, was not one of my better days. I had hoped to get a bunch of stuff done and instead got totally nothing done except for a few posts in this blog. Maybe that’s the way it goes with cancer, I’ll just have to keep track of it and see.

There are a few things that have been going on I’d like to mention …. so here goes.

We finally got enough snow here in Vermont that I am confident, Santa will be able to deliver this year. This is very important information for some young people I know around the globe, and I want them to know … I’m sure he’s coming. Sleigh, reindeer and all. I see no reason why it should be any different then any other year … as a matter of fact, I have a pretty big list for him myself!

Thanks for all the “welcome home” emails and calls.

Dave J. and Bill B., I want you to know that as soon as the holidays are over, we’ll be back on the airwaves Tuesday nights! I’m planning on this to boost my spirits during the long winter months too … so get ready. I believe I’ll be in good enough shape to run the sound boards and mixers … and believe me, we’ll have lots to talk about!

Bill N. (from Florida) … you said it exactly, how I feel right now. I’m going to cut and paste a little section of your email here:

“Been reading and following your adventure. I remember when I finished it was bitter sweet. While there I felt like I was fighting and doing something to fix this nasty problem and when I left the fight was over and wasn’t sure if I won or lost.”

Bill, that’s so very accurate, I couldn’t have put it in any better words myself. I really can’t tell where the heck I’m at, and what I’m feeling like … but there is one thing I can say, and that is, I’m glad that battle is over. Even if it doesn’t last forever, I’m happy to be back in the comforts of my home, and so glad I don’t have to have to wake up to a crew of doctors and technicians every morning.

I too, have to return (to Boston) on the 21^st of Jan for scans and tests, and I’ll be thinking of you J …. thanks buddy. By the way … that was a great Travis Tritt tune you sent!

Speaking of scans and tests, my friend Ray L. has offered to drive me to Boston … even leaving at 4am in the morning! Yikes what an offer! I thank him for that and as the time draws closer we’ll make a plan.

Harry M. and David L. stopped by yesterday for a few minutes and besides a few other things, let me know that the local health club here was having a membership sale, and that ARIS was going to help pay half the membership fee, for their employees if they join. I think that’s an awesome offer and I’m planning on joining. I don’t think I’ll be using the weight lifting room … but the pool would be great! I’m definitely planning on joining.

A friend Sherian V., living in the UK put up some photo’s of where she’s living, and they were absolutely awesome! Sherian used to live here in Vermont, but recently packed up her house and kids (single Mom) and made the move! You should be proud of what you’ve done … it was a “big balls” move and I applaud you for your choice. I wish you only the best of luck and happiness!

As a last thing for tonight’s quick posts. I received quite a few comments, about the burn photos I had posted last week. Yes, they are real. Yes, they’re getting worse before they get better (just like Doc told me they would), and yes, I’ll post more a week from now or whenever they begin to heal.

Oh …one last thing, … when Sher and I opened our snail mail yesterday, there was an invoice from Blue Cross and Blue Shield asking for a check in the amount of $101, 762.38. That seems to be our share of the cost of this treatment.

Wow … Happy Holidays!

Tuesday, September 15, 2009:

An excerpt from a from a frustrating phone call I made today.

Bob:
“the person I had on the phone yesterday told me I could ask for my case to be expedited quickly”.

VT-BC/BS Rep:
“is this a matter of life and death?”

Bob:
“for me it is, … it’s been two weeks and I can’t even allow my health advocate and lifelong mate to be able to speak for me. I have cancer and I’m trying to arrange treatments in a reasonably timely manner. Everyday you folks delay in your decision making, I get sicker.”

VT-BC/BS Rep:
“but it has to be a matter of life and death before we can move things along any faster”

Bob:
“would you define a ‘life and death’ situation to me?”

VT-BC/BS Rep:
“are you lying on the sidewalk bleeding to death?”.

Bob:
“do you really think if I were lying on the sidewalk bleeding to death, that I’d take the time to call you?”

VT-BC/BS Rep:
“is there anything else I can help you with today sir?”

Bob:
“no, you’ve explained enough”.