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.

We went back in to talk with Doc Delany and get the scoop on the results of the days testing. That’s one thing they have done really slick, by the time your scans and x-rays are done, the doctor has received, and examined them, and has had the time to study and compare results. MGH has a huge file on me by now (yeah, it’s impressive, four big, stuff to the gills three rings binders and a half of shelf of DVD’s of every scan they’ve ever done of me.

He came to see me almost immediately ,which was great because after a few hours of this stuff I was beginning to wear down. I don’t like getting poked and prodded to begin with (well who does ?), but afterwards I’m always ready to bolt out there. Honestly, had I not promised to see this through the entire process, with Doc Delaney, I probably would’ve left the building right then and there.

Doc had positive, and not so positive things to say. For one, the measurements of the tumor show that it hasn’t grown any … that’s a good thing. We don’t want to see growth. On the other hand, it hasn’t shrunk like tumors traditionally do. Now that’s partially because it’s bone cancer and shrinkage is limited, but a little bit would’ve been nice to see. The key to it shrinking a little is that with each tiny amount it might have shrunk, the possibility of returning function would have increased.

Now I can tell that leg movement, nerve and muscle function has not gotten any better over the last six months … as well as I can say that it hasn’t worsened either. So it’s kind of a wash out there. No better, no worse. In case, this is a winning situation. I didn’t really expect to get much better … my expectation was to prevent it from getting worse. So I’m pretty comfortable with this report.

All the x-rays came back clean … this is really good (best news of the trip). My problem here is ( and I was well warned before excepting this route in the beginning), that if the cancer pops up somewhere new, there can be no more radiation treatment for me. They don’t even like doing x-rays and MRI’s on me because my system is pretty much saturated already. Next time, it’s surgery at best. So this is a really good thing that nothing new is rearing up and attacking other bones at the moment.

The blood and oxygen intake of the tumor was not quite as cut and dry as we all would’ve liked. While the tumor has not entirely stopped absorbing these two things from my blood stream, it had greatly reduced its intake by ninety-five percent. Good and bad you might say.
It means the tumor is not entirely dead yet (in the beginning they told me this could take up to a year and it’s only been about seven months), but it’s obviously been heavily damaged and expected to continue going down till it reaches zero. That would be nice too.

Put all this in a nutshell … it’s looking pretty good. While the possibility of gaining back any lost function is becoming more and more unlikely, the possibility of “knocking off” the tumor is pretty darn good. To me, that’s a more then fair trade. It’s my belief, we’ve done pretty well for the time being. Doc seemed pretty satisfied too.

I was hoping not to return for a full year before being tested again, but Doc says that we shouldn’t and can’t wait that long yet … so current plan is to return once again in five or six months and do it again.

In the meantime, life remains about the same. Without shrinkage of the tumor, the pain management situation remains the same. Without being a hundred percent sure the tumor is dead, the uneasiness of the future remains about the same. But knowing that there has been no spread or new spots to deal with makes me feel a little more comfortable about the next year or so.

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

Isn’t it a joke that our Senate is so poorly positioned to do anything about Health Care, and that the lobbyists actually control our Senators votes? Shouldn’t they be embarrassed or something? I mean maybe it’s me, but it seems so obvious that it’s a crooked system and that it’s run and controlled, by big business, that even our government is afraid to touch it. What a joke … and here I thought health care and insurance companies were setup to help people … how naïve of me. Not only are they already raising their premiums but they’re dropping tons of things they used to cover.

Now our government is going to determine what percentage of our paychecks we can afford to pay out for healthcare! … how ridiculous is that? Think fifty percent will cover it? Maybe sixty percent next year?

Didn’t we just learn this lesson from the banking system that screwed us over? That they’re not loaning the money out they were supposed to? … is this really any different? There’s an inherent thing about big business, it’s goal is to get bigger. The insurance companies hit the “Big Golden Jackpot” with this. Many have already raised their prices. Go ahead … tell me this isn’t a crooked deal, or in the least, the stupidest thing our government has done in our lifetime. Either way, us people are going to get screwed.

Now we have to join, it’s illegal if you don’t have insurance … and if we can’t afford it, our individual states will pay the price in subsidies, which in turn will raise the taxes we pay … and on and on. We’ll pay for it either way … so why have it so profitized?

I just can’t “warm up” to a plan that screws the little guy any tighter in, then he already is.

My point is this … even if we paid the more then “gangster rates” of these insurance companies, if you were to dare use the insurance (like I did), you still get stuck with tremendous bills! If they actually paid the claims, then I’d feel …well, ok, they did the right thing at least … but instead, you have to fight for what you’ve already paid for, and in a most ridiculous way, where you’re considered stupid and a liar, right from the start.

You just wouldn’t believe the excuses our insurance company is coming up with about why they shouldn’t pay the folks at MGH where I was treated … and this is after pre-approval!

It’s not right, it’s just plain not right, and our government is giving them the “green light” to go ahead and screw even more people.

Pretty soon (if not already) you’ll need insurance, to cover the insurance you already have … wouldn’t that be lovely? Insurance on insurance.

I’m going to ask Sher to do a series of articles about our experience.

OK, ok … I’m calming down … just pisses me off that this is happening with the approval of those we voted in. Did your Senator take any insurance company money this last election? … you bet he/she did … and you’re about to pay for it now.

Happy Holidays to all and let’s hope this is a better year for the whole planet.

Love you all

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!

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”.