Chondrosarcoma – ah shit, bob's sick

Monday, August 31, 2009:  8:36pm.

What a pleasure today was, just a day of going to work and returning home without any hassles. It’s amazing, how such a simple thing like that can be so rewarding and satisfying. So much so, that it’s hard to put into words. You know, all those simple things we take for granted are actually tremendously valuable to our well being … we just don’t see it everyday, we don’t even look for it everyday. We never take the time and “stop to smell the roses”, until something stops us. It’s then, that you tend see the value in simplicity. Yep, I saw it today. I felt it today.

After a 24 hour period like this, I feel like I’m approaching the point of being able to make a sensible decision about the upcoming choice I have to make. Thank goodness because neither Sher nor I have felt capable in the past weeks. Our brains have been scrambled with so much incoming data that we’re not trusting in our thoughts. I am soooo glad we put everything on hold.

Since our Boston trip, we both have been “leaning toward” accepting the proton therapy as the way to go with this. I actually felt that way as soon as I walked out of Dr. Delaney’s office last week. But I also felt I had to give myself more time to think about it and to discuss some pros and cons with Sher. After all, there’s that old saying “the devils in the details”, and let me tell you , that old saying has a whole new meaning for me these days.

I’m pretty confident in that decision though. Proton therapy has been used on lots of cases of cancerous tumors and with a pretty good track record. Granted, they haven’t done many of the type and placement of mine, and they’ve never done one as large as mine at MGH but, they are willing to try it and I think I’m willing to accept the risks. After-all, somebody has to be first, so why not me? Where would we all be, if it weren’t for those who’ve gone first before us. Where would the whole of mankind be?

So, this coming week, after my new insurance kicks in, I’m going to email Dr. Delaney and ask him to get the process “rolling”. It’s an eight and half week program, of 43 treatments, of mega high doses of radiation. Dr. Delaney, said that he would personally call my insurance company and send them his documentation, on the work in this field that he’s been doing. I’ll have to be in Boston five days a week, and I haven’t quite figured out how I’m going to do that, but I have faith that something will give me the opportunity. I looked at places to rent on Craigs List today but the prices were way to high for my blood and besides that almost no one wanted to rent for 8 weeks. But something will come up. One thing for sure is that I want to do this before the cold weather sets in, because I don’t want to travel to Boston 5 days a week in the middle of winter. No way … it’s basically, now or never.

Last week, I set up my son in Florida to handle most of Scifillians business transactions for the next few months. That was another BIG problem I needed to solve and I’m glad it’s off my shoulders for the moment. I don’t think he realizes how much that lightened the load.

My younger son starts school tomorrow in Grafton, VT. And that too will take away some of the pressures of the daily madness. 

Maybe there is hope!

My goodness, how lovely to have lucid thoughts again, even if it may be a temporary condition.

It’s already late, (11:15 pm) and I’m just settling down to write my post for this evening. I poured a big glass of iced Chaga tea and relaxing in my chair.

It rained all day today, and it was cool for summer day. It’s the last weekend of summer and Alberic is getting ready to go back to school! He’ll be in 6th Grade this year! Yikes, time goes by so fast.

Today, I made out a “bunch” of invoices for our server company Scifillian. I’ve been slacking in that department … probably because I don’t seem to have the  ”drive” at the moment. I can’t really complain about business because its actually been pretty good lately. We’ve been adding new clients and websites to our servers every month. I feel lucky about that because in the current economic climate, I thought we’d be going in reverse. That’s a good thing because it helping support us financially and I’m not sure how much work I’ll be able to continue doing outside of the house.

I recieved several emails from a good (great) friend in Sweden over the last few days and they have been so comforting to read. She had a problem similiar to mine several years back, and we have kept in touch ever since. She didn’t have cancer, but she did have a series of very serious brain tumors. I always enjoy hearing from her. I hope someday maybe she’ll publish her own inspiring story about how she personally dealt with it.

I got a lot of email, phones call etc etc. about last nights article ” Road Trip To Boston” … but I think this morning post calmed that down.

I felt “crummy” today, it’s the first day that I had some different kind of back pain, and I’m not sure what it’s from. There could be several reasons for it, for one thing, I used to have this huge old 26 inch monitor and it broke, so I got a new one and disconnected it and brought it out to the barn … but it was heavier then I realized. I also drove 6 hrs. yesterday to Boston … that could’ve done it too. Of course it could be new pains from the cancer, but I don’t think so. At least I hope it isn’t. The pain I’m experiencing from the cancer is mostly in my legs. The nerves and muscles are being stretched by the tumor and that causes some constant pain.

Sher brought some giant carrots in from the garden! I was amazed at large they were. I haven’t paid much attention to the garden this year but Wow! … they were great. She had planted them for Al (he loves raw carrot sticks) and they were the best carrots I’ve ever seen that were grown in Vermont.

As of right now, I’m planning on going to work all week in White River Junction (as long as I’m feeling well enough). I enjoy that. I feel like I’m getting trapped in the house a little too much lately … so it should cure that feeling. I work at a small company called Aris Solutions and I must honestly say that its the nicest place I’ve ever worked at. Most of my life I’ve been in my own business … but this place is just amazing. The people and the bosses are just some of the nicest people I’ve ever met.

I guess today was a kind of quiet day and beleive me thats ok with us. We’ve had our hands full of excitement lately and its wonderful to have a break.

I didn’t have a chance to add the new audio file from Bostons trip yet but I hope to sometime tomorrow. It contains our discussion with Dr. Delaney and it pretty interesting to listen to. I also set up a contact page for this website. Folks have been asking how to contact me so I thought I’d try it … we’ll see, if it gets out of control, I’ll just turn it off.

I also added a few new items to CookingWithoutBob today … now that was fun.

Well, I think thats it for this evening. I’m tired, its rainy and cold, and I’m ready for a long sleep. But if you’re wide awake yet, go check out my friends site at StreamingOldies.com and listen to some tunes!

Oh Lord, Please Don’t Let Me Be Misunderstood, (Eric Burton, The Animals).

A Quick Morning Post (Saturday, August 29, 2009 – 8am)

Let me explain why I’m writing this blog in the first place and what it purposes and goals hopefully are. I know, there are millions of spelling mistakes, parts that don’t quite make sense, paragraphs that probably need to be moved around … but that’s part of the idea. I want it uncensored sort of speak, unplugged, raw. For those that know me well, you might even say its part of the “art” in me.

Let’s look at it from the angle of “me” first. I’m not writing this (btw, I don’t consider myself a writer by any stretch of the word), with the only intent being, informative to friends and family. First and foremost, I’m writing it to record how I feel at the moment and secondly to get it “off my chest” before I go to sleep at night. If I don’t face the days events, I feel like I’ll go nuts, as in crazy.

These are my thoughts, not necessarily my actions. Get that clear in your head everytime you read this blog. When something like this happens to you (or someone you know and love), millions of thoughts run through your head and what I’m doing, is trying to record those thoughts. First, for my own self. So that I can organize the information coming in. Then, I’m allowing others to read those thoughts because I think it’s important knowledge for everyone to have. The reasoning behind my actions, that’s what you’re reading.

Before I went to sleep last night, Sher had read part of the previous post and started to cry, “you’re not a burden on us”. I said to her that, that was a thought that came through my head, not necessarily how I feel and more importantly, not something I’m basing my decisions on. Just a thought, that simple. Now, I bet you could ask any cancer victim that was sitting in my shoes, if thoughts like that ran through their head and they’d give you the same answer. Yes, of course they do.

Dealing with cancer and death is a process. A process that you have to go through, in order to become “solid” with yourself. To be sure you’re making the right decisions for you and those around you. What I’m doing is letting it all out on my keyboard.

What would the purpose of the blog be if I held back the “real” stuff? I don’t think you’d want me to. I don’t want to. Anytime we make a decision about anything, even as simple as “what do you feel like for lunch today”, we go through a thought process to determine what it is we feel like eating. Well, it’s the same thing. Burgers and Fries, nah … let me see, how about a chicken salad sandwich?, nah, I know how about a BLT! … you know, you go through a list of things you like and then decide. That’s what I’m doing here on the blog. As simple as that. So, friends and family, noble country men, and all who read this blog. If I say something on this blog, and it doesn’t agree with you or you don’t understand it. It is simply the thought process at work.

Yesterday, after seeing Dr. Delaney, Sher and I drove over to Cambridge to have lunch and meet up with her son, Mike. We sat outside on a bench in front of part of the M.I.T. buildings and talked about what we had just experienced in the Dr.s office. I said to Mike, that my first impression or thoughts about trying this experimental proton therapy was that I’d do it. (Mike’s 24 years old, just got his Master’s. I’m so proud of him that I can’t really put it into words) Yes, I wanted to try the experiment even though I’d be the first to ever have such therapy done, on such a large tumor. There’s no past data to go by, so how can they tell you what will happen? My thought behind that was, “maybe it’ll help someone else in the future”, maybe some kid out there has the same tumor and cancer as I do and it might help them. What’s wrong with helping science?

Now, I didn’t hop back in the car and go sign up, but I did record that thought as something I should weigh when I do make my decision. And that my friends, is what you’re reading when you read this blog. Mainly my thoughts.

It’s only been a few weeks and very few, if any, decisions have been made. We have been gathering data, deciphering that data, and running it through for a first pass on the decision making process.

I got accepted to the program, to be treated with proton therapy. Of course, that opened up a whole new can of worms and lot’s of decisions need to be made. It’s 43 treatments, for 20 mins a day, for 8 ½ weeks (no Saturdays and Sundays).

Will Blue Cross/ Blue Shield pay for it?

Where will I live in Boston while recieving treatments?

If the treatments fail … well, you know the answer to that.

Is this really what I want to do?

The Whole Tale:

Today was another big day, I can’t believe that I’m even still awake writing this. I just poured myself a big glass of Mac’s Chaga Tea and sat down to write at 10pm.

We got up at 4:30 am to prepare for our trip to Boston. The night before Sher had filled the gas tank, we got all our papers together, all the questions we wanted to ask, put the address in our GPS, and printed out directions from Google. We guzzled down a half pot of coffee, fed the dog, and two cats, left them some extra crunchies, and away we flew. We took our GMC Envoy for several reasons, but the main one was that if Sher had to drive at some point, especially on the way back, it would be easier for her. Our new Toyota is standard shift and she is not practiced at it. I wasn’t sure what kinds of hoops this place may have me jumping through, and how I might be feeling when leaving time came around.

We needed to be at Boston’s Francis H. Burr Proton Therapy Center at 10 am. Luckily, I had been at Massachusetts General Hospital many times before and had a darn good idea where the Proton Center was, but it was still a good three hour drive and that’s not counting traffic. To add to the chaos it’s also Friday, and the last Friday of summer so anyone going to the beach, or taking that last summer Friday off was going to add to the roads being packed. I was nervous about making it on time. This was one appointment I didn’t want to be late for, it was hard enough to get and I didn’t want to blow the only chance I had.

We stopped once for more gas, coffee and a few plain donuts (yeah, Dunkin’ Donuts), and arrived with only about 15 mins. to spare. It was just about right where I expected it to be and to be honest, it wasn’t a bad trip at all. Just a bit more of a rush then either of us would’ve liked.

We filled out all the regular hospital forms (I’ve filled out more forms in the last 4 weeks then I have in all the rest of my entire life), and sat down to wait. I couldn’t believe how busy this place was. They were wheeling patients right through the waiting room! … it was crazy … but very professional and efficient. A nurse came out to meet us and bring us to see Dr. Delaney. We waited in a small room while he checked the scans and reports with a “fine tooth comb”, we had brought with us. Then he came to talk with us.

Basically, Dr. Delaney explained that for one thing, there was no turning back once the treatments were started. There was no chance of conventional surgery afterwards if it did not control the tumor. The idea is to stop the growth … so if it fails. The outcome is not pretty. Basically, they start trying any desperate measures they can until the end, and none of those have ever worked. In a nutshell, they drug you till death arrives.

I would be the forth person to have this treatment, for this kind of tumor … but the first for a tumor this size. So, this really is experimental. He made no promises of success, and made it clear that I understood that.

On the up-side of this treatment, life quality remains high. You drive in, you get treated, you go home. It’s almost that simple. The outward side effects are minimal. There is some permanent damage to the bones. The treatments are a mix of regular type x-rays and proton beams. I’m not really that concerned about damage to my bones. I mean either way it goes I don’t have that long to live. I’ve already accepted that reaching a ripe old age isn’t for me. He had some other positive things to say too. He felt I had enough space around the tumor that a minimum of other damages may not occur, that’s a good thing.

So, now the choices are in my hands. For the first time since I was diagnosed with this disease I have a choice to make.

Dartmouth wasn’t wrong about the surgery they were (and still are) offering, they didn’t offer me proton therapy for several reasons. For one, the risk or gamble is high stakes. It’s a life or death decision. I mean death is inevitable anyways, but who the hell is in a hurry? The other reason is, that if the surgery doesn’t pan out the way they think, there is always a chance for more surgery. That’s not true with the proton therapy. The thing that Dartmouth didn’t offer me was much of a “life quality”. I guess that all depends on how you look at life and where you place your personal values. Yeah, I could live in a wheel chair and piss in a bag for the rest of my life, but then you have to consider those around you too. Do you really want to “lay” that maintenance on your mate? Do you know what it is to help care for someone in that condition?

I’ve thought about this stuff, believe I have and I keep coming up with the idea that the rest of my life ought to be shorter and sweeter, instead of longer and harder. Now there’s two ways to look at that thought too. The real questions are: Do I spend the time I have left for myself or do I spend the longest amount of time for my family? That’s what it boils down to, and I can’t for the life of me figure out which is the right thing to do.

Let’s say for arguments sake, that both methods (surgery and proton) work, and that both carry the expected amount of damage and benifits. Now I’m stuck with this thought.

With the conventional surgery method, I may give my family 10 years of time with me, but my life quality is poor, and the maintenance it takes to keep me alive is high. With the proton therapy, I may offer my family only 5 years, but the life quality is much higher and maintenance is minimal. That’s what we’re talking about here. Now how the hell am I supposed to decide that?

Unfortunately, that’s the decision I’m stuck with. I love Sher, and I don’t want her (or anyone for that matter) to spend the rest of her life taking care of me. I don’t want anyone to take care of me. Let’s have some fun while we can and remember things for the good that was. On the other hand, I have an 11 year old to think about too. What the hell do I do about that? That’s what makes the proton therapy hard to accept. Am I robbing time from him because I chose the “shorter, sweeter” route?

Ah, shit. It’s late and I’ll never solve this tonight. I need a good book on decision making.

To be continued:

Cancer For Dummies