Chondrosarcoma – ah shit, bob's sick

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!

I’ve started a new category of posts today that will be published, but they will not appear on the front page of the blog. Not because I don’t want anyone to read them but because I’m not sure they really belong on the main page and there is likely to be a lot of short posts in it.

The new section of the site is called Health Journal, and it’s purpose is for me to keep track of how I feel both physically and mentally on a daily basis. This is important to keep a clear record of.

At this point in the game, I want to keep track of my medication use, weight gain or lose, depression, stress, appetite, basically all the things that on my “Cancer Scale” (right-hand column) but with an explanation of why these things may have changed.

I wish to keep an eye on things like how many days I’ve felt “down in the dumps”, or “defeated”. How many times I needed a higher doses of medication to get through the day. Hopefully, this will reflect some light or advance notice if I start to slip into a funk of some sort.

It may sound ridiculous that you wouldn’t know if you were getting depressed or stressed … but sometimes you don’t … at least I can’t always tell.

Anyway, I’m going to try this and see how it works. This way I’ll have a hopefully daily, or almost daily record of both my mental and physical state. May end up to be useful and/or interesting. Again, these will be short, direct posts and will not effect the front or main page of the blog. Kind of like a quick diary entry.

You can read the posts by looking down the right-hand column and finding the section that says “Health Journal”. All the other categories, are and have been, published on the Main page as regular posts.

I woke up this morning not feeling well at all. My right leg felt like a ton of bricks and just wouldn’t move along with the rest of my body.

The burns on my back felt very uncomfortable and within 5 mins of opening my eyes, I knew this wasn’t going to be a high-energy day. As a matter of fact it took Sher 3 times to wake me up and get me going. The burns are still getting worse by the day, they make every freakin’ movement painful.

The skin surrounding the burns seems to tighten up over night, so I sloshed some Auqaphor on it to try and make the skin more flexible.

My mental state wasn’t very good either, when I get like this I feel like a trapped rat, in a body that isn’t functioning very well. It’s a strange feeling that my brain hasn’t caught up to yet. My mind wants to move forward and accomplish, and my body won’t let it. I don’t know if I’ll ever get accustomed to this.

Stress:

Yes, I seemed to have woken up stressed. Not sure why, but could have something to do with the invoice I received for $101, 000.00 from Blue Cross.

Depression:

Well, I’m glad to be home again … but ditto on the stress comments.

Tiredness:

I still can’t believe how much I’m sleeping. I know depression and stress can both cause tiredness but at this point I don’t think they’re related. I think my body has been through a lot in the past 4 months and I’m still playing catchup. I can still feel the effects of those last 3 IMRT treatments in my blood.

Comfort:

Not counting the physical discomforts above, I am comfortable, especially being home. I can’t seem to sit for long periods of time, but I believe that’s due to the burns … they’re in a bad spot for standing or sitting.

Appetite:

That seems to come and go. A few hits of pot seems to always help and I have to guess that’s what keeping me eating.

Meds:

By 3pm. I used my normal daily dosage of meds.

In general, I’d have to call this a pretty crappy day. On a scale from 1 – 10 … I’ll call it a 5.