Chondrosarcoma – ah shit, bob's sick

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
Read more…

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!

Wednesday, September 16, 2009

Well, today was a strange day … or at least that’s the way it ended up. I woke not feeling great. This has been happening more and more often, but I always assume it’s due to lack of sleep and lifestyle in general. Let’s face it … when we’re younger we all live at a fast pace (at least I do) and never think about it catching up with us. For 40 years I’ve lived through the work day on coffee, cigarettes and stress. We all know how life is and I’m no different … honestly most of my life has been spent as a workaholic and find it really difficult to stop that way of living. Today I woke and felt like (for the first time) I had cancer. I actually felt it … and what strange feeling it was.

I have to admit, that I’ve felt like I’ve been lucky, in that the pain I’ve been feeling haven’t been what I’d consider “bad”. OK, yes I take a steady dose of painkillers and that can “mask” pain … but this pain was different. There is no masking this pain, it was a deep inside the bone type pain that I’ve never felt before …. a deep throbbing pain in my leg / hip area that the painkillers just couldn’t cover up. Sort like a really bad toothache in your leg, that just won’t lighten up. Weird to say the least. I thought to myself, this is why I’m in a hurry to get these treatments. Everyday I feel more and more of my body shutting down. Slowly but surely, it gets worse. When I first started this blog, that wasn’t at all true … but now, things are changing.

I started off going to work, I carpooled with Harry M. (as we often do) and got to work at our regular time. After a few hours, Harry said he wasn’t feeling well, and thought he should leave and go home for the day. I said fine, I’ll drive you back and take the rest of the day off myself. We drove back home and when I got there Sher was on the telly with BC/BS again dealing with all that. I sat on the bed for a few minutes and fell asleep soundly for almost 4 hrs! Yikes, I woke up, I should say I jumped up and knew the whole damn day had gone by b…. I was angry, there were so many things I wanted to do with the extra time off work … but the hours were gone.

At dinner, Sher told me she spent almost the entire day on the phone with BC/BS. They said they didn’t have the info that both my doctors have sent. She knew that wasn’t true and that it was yet another stall tactic. So, she went through the process of tracking down each doctor, refaxing all the material and confirming it was sent and blah, blah, blah. Let me just stop here for a minute and say something about the work Sher is doing. I don’t know how other couples or people have dealt with things like this but let me tell you … without the help of Sher, I’d still be … let’s say, no where. She’s been spending hours everyday dealing with setting up my appointments, insurance companies, dealings with doctors at Dartmouth, Springfield and Boston, making sure all this coordinated in a way that fits into our life, And that’s not counting all the regular things she does, like maintain the house, shopping, food laundry, help with my 11 yr. Old, etc etc. Her day, just never stops any longer.

It’s a shame that when you’re most in a time of need, that these things (like dealing with insurance companies) are most difficult to work with. If I were a single man, there is no way I’d be able to hold my job and deal 24/7 with this stuff … no way. It takes a team to do this … and honestly, we could even use more help. So next time your mate does something for you … thank him or her!

I received quite a response from yesterdays post about the “phone call” … that was unbelievable … but true. I find it hard to accept that this kind of behavior is typical but it seems to be the norm at BC/BS. Maybe its company culture. My older son (in Florida) once worked for a company that provided support for AOL customers and they were basically told to get the customer to call back as many times as possible because they were paid “by the call”. Each time the phone rang, the company got to charge AOL another “x” amount of dollars. So of course, they didn’t want to solve the customers problem with just one call. The company culture was to have the folks that needed help call back as much as they could. So, the incentive was not to “help” people at the “help desk”. That’s what it seems like at BC/BS … they don’t have the incentive to help. The more they actually help people, the more they have to pay out. The longer they can stall services, the longer they can continue to make interest on the money they’re holding … makes sense to me.

Oops … it’s getting late and didn’t realize this post was getting so long, and well…. tomorrow’s another day. BC/BS is now supposed to have an answer for us tomorrow (always tomorrow, right?), let’s see what happens.

And ahhh, hey Bill N. (Florida) thanks for those emails. I appreciate them. So interesting that you and I are in touch and that you’ve experienced all that I’m about to. Best of luck to you my friend. Both Sher and I read them with great interest. I think you’re right … we are the guinea pigs for them, but thank goodness for that too. Without folks like us that were willing to try these new therapies where would they be? … and yes, I plan to continue posting direct from Bostonthe whole time I’m there. I have already prepared my laptop with all the necessary software to keep this site running and my work for my company going full blast!

Thank you.

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”.

Another fine day in paradise. We are still waiting to hear from Blue Cross/Blue Shield on if they’re going to cover my proton treatments.

I just finished listening to President Obama’s health care speech and I found it extremely difficult to follow, and confusing. I do hope they do better with the actual coverage. I do believe that everyone should have health care … but it can’t be so confusing. Maybe I’ll understand it better tomorrow morning. We need a simple plan, no more then a one page form.

I went to work today and plan on going the rest of the week … meanwhile, we wait, wait, wait.