Chondrosarcoma – ah shit, bob's sick

Too many things to write about yesterday. I neglected to mention that the Hope Lodge informed us that a room would not be available until sometime in November for me. Considering that treatments start sometime next week (Oct 5), Sher and I are now scrambling to find other living quarters either for the entire time or until November. Due to the Fall season, so many places are booked up that its becoming a real challenge to find anything at any price. I did contact Teri M. about her extremely generous offer and will follow up this coming week about it.

The treatments dates for the beginning Intensity Modulated Radiation Therapy have been moved up to Oct 6^th, so I really have to get moving on this and find a place to live.

This week I missed Thursday and Friday working because of the Boston trip and recovery from that trip. The injections they give during the scans has side effects whether they want to admit it not.

Hold on a sec … I gotta get my dog it’s 8pm snack.

Today I picked Alberic up from school. This was my first trip to the school this year. I did get a chance to speak with teacher Shane C. who was very aware of what was going on. I thank him for his awareness. I am planning to email him and ask about coming to class one day and explaining how proton therapy works to his students, most of which I have known for the 5-6 years that Al’s been at the school. There is an incredible amount of science going into these treatments, which should interest the students and I’m someone that many of them have known for years. There a good lesson to learn in there somewhere … that anyone, including someone in your family, can suddenly become sick with cancer.

Several more folks have signed up for accounts on this website which is exciting.

I’ve indirectly decided that Patient Navigators are very limited in what they can really do for you. Which is a shame because they idea behind it is wonderful, and their intent is good … they simply are not given the power they need to get through the red-tape and BS they need to get through, to really help you.

I’m hoping to have a lunch this coming week with my long time buddy Ray L. before going to Beantown for my own baking.

Was planning to take a bunch of photos in Boston this last trip but it just didn’t seem to work out that way. Between getting stuck in traffic, being flashed by a bald headed lady, and barely making my own appointment, I kind of forgot about the pics. Next time I go, which should be for actual treatments, I’ll be sure to take some.

Hold on again … I have to make Alberic some popcorn for his snack!

I showed Alberic my new tattoos today (the registration marks for the IMRT treatments) … it didn’t seem to phase him one way or another … but then I’m not really sure what I expected from an eleven year old J . He did however show a huge interest in understanding how hydrogen atoms are bounced between to magnets so that they become positively charged and pass through your skin without cutting or damaging you. That caught his interest.

I emailed Bill N. in Florida that I was going in for the planning session this week and when he replied, he told me about when he was receiving treatment that he saw “sparkling lights” when his eyes were closed, every time the proton beam “fired”. He sent a flash file (which I’ll post sometime this weekend) that is something similar to what he saw. I wonder if I’ll see the same? If I do, I’m going to email him!

Damn … one more stop, I need water to take these meds with.

Besides this coming week, I may have to stop working earlier then I originally expected. I thought I’d be working for the next twoo weeks straight, but with the Boston housing situation the way it is … I may need to stop and get it all straightened out before hand. We’ll see how it goes.

That’s it for today’s updates … just for the heck of it, I’m adding an image of one of my favorite cubism painting entitled “The Guitar” painted in 1914 by Juan Gris.

Tomorrow is the Boston Proton Planning Session.
I drive to Boston.
I get scanned.
They take their measurements.
Make their plan.
And I return in two weeks to start the process.

It’s so crazy the way this is all done … just totally amazing. With the protons (which are positively charged Hydrogen atoms) they plan on changing or altering the DNA structure of the tumor while inside me. The idea behind it, is that the tumor will not be able to repair it’s own DNA, and therefore, stop reproducing more cancerous cells, and hence, stop growing any larger.

Unfortunately, this will not alter anything that’s already been damaged. By this I mean, the function of my legs, pain, etc. etc., should all remain the same … however, I won’t get any worse either, and that will be more then satisfactory with me . So, the way I am, is the way I’ll be.

In reality, ten years ago, I would have already “bought the ranch” sort of speak. So anytime from this point on … is bonus time. They sent people like me home with a giant jar of morphine and syringes and told them that’s all they could do. So already I feel lucky. Every single day that passes, is another day I’ve won … and honestly, that’s all that matters.

Time expectations? … well, who cares? I ask. I’m already ahead of the game, so every day’s a winner for me.

Health wise? pains? … yep, both are a problem at the moment, but nothing I can’t live through. If they can halt the cancer in it’s tracks … then managing the pains and my basic health should be OK.

Please keep in mind, that this is not a cure-all. There is no cure for this Chondrosarcoma. What this is, is a trade off … for more time, if it all works.

Think positive, keep smiling and laughing (I am) and with a little luck, all this will be worth it in the end.

If I’m back from Boston early enough … I’ll try and make a post.

It’s Friday, I made through a whole week of work (Mon. thru Fri) and I feel very good about that … actually, I feel great about it. I am a bit tired, I admit that … but happy. I also attended a meeting to day about this awesome video conferencing software. I should say software and hardware. What a great solution for companies that have logistical meeting problems. It was expensive, but I can see it saving a lot of money too. I believe it will be worth the investment in the long term.

Today there were several things that happened, allowing us to move closer to the reality of getting the proton therapy going.

The first was that we received a letter from Blue Cross/Blue Shield requesting more information from my primary care doctor, Dr. Gary Clay. They were basically asking why I was being referred to an out of state doctor and why I wasn’t having the therapy done at Dartmouth Med Center in NH.

Sher called Dr. Clay’s office and explained that the reason this was chosen is because neither Vermont nor New Hampshire have proton therapy equipment. Dr. Clay replied he would take care of that immediately.

The next thing that happened was that we received an email from Dr. Delaney in Boston stating that he was beginning the proton intake process (starting to arrange it), and that his office would be in touch with me shortly. Thanks Doc!

So, we are assuming that both doctors have the same goal in mind and that is … making this happen for me. And that my friends, is a beautiful thing. Soon I should be able to start planning my stay in Boston.

I feel really lucky to even have a chance at this … you know, just all the pieces fell into place as if it were supposed to be that way. That’s the way both Sher and I feel about it, and as I explain it to different people, they really begin to understand why I’ve made the decisions I have. My feeling of confidence in making the right decision has riased from 99% to a full 100%.
Here’s a very short poem titled: Be gentle … if you should ever leave

Ancient peoples knew,
and lovers with a bias,
Emily made it clear,
a wounded deer leaps the highest.

Be gentle with my heart …

That’s it for today. It’s mushroom tea time!

Wednesday, September 02, 2009 – 9:45pm

This evening I sent my email off to Doc Delaney asking him to help arrange the proton therapy sessions (see photo below), that hopefully I’ll be taking soon. I’m excited about this and I have a lot of people to thank for helping me along the path I’ve chosen.

I’m more confident then ever that I’ve made the right choice for me and those around me. Whatever the results are … I’ve made the right choice for this part of the journey

As soon as I hear back from the Doc, if the news is “it’s a go”, I’ll start searching for temporary living quarters somewhere close to MGH in Boston. Eight and a half weeks will be a long time from home, but hopefully this will give me even more time later on.

This was one of the harder decisions I’ve had to make along way. I should say we’ve (Sher and I) made along the way. It involved so many complex pieces of information and emotional drainage that it took the 2 of us (in a sense) to make it. In the end of course, it was my decision … no one else can really do that for you, but we are both comfortable with it.

So I raise my glass of mushroom tea and “toast” the decision! It’s done. Final.

Now we wait and see if the insurance company is going to cover the cost of the therapy (pre-approval). If they just cover “that” I’ll be thankful.

The rest of my day today went pretty well. I was feeling much better, at least ½ full of energy and didn’t even take a nap when I got home from work! Fantastic … that’s more like it.

I received a lot of emails today. Some from folks I know, and some from folks that simply bumped into the blog. I thank you all for your kind words and support. Sher and I both, are very appreciative. You know, it hasn’t been easy on her either. She’s been covering many of my responsibilities as well as helping with phone calls, appointments, bringing Al to school … the whole gambit.

Alberic reported his first day back to school went fine … that’s music to my ears! I was concerned how he may handle all this and school starting, but it seems he’s done fine. Kids are amazing sometimes.

Doc and his assistant give me some last minute instructions to relax.

Doc makes some final adjustments to the proton beam.

Doc flips the switch!

One of the things that’s been driving me crazy from the get-go of this cancer thing, is that there seems to be “0″ as in zero, support or support groups, for young children with a parent that has cancer. If there are any, they awfully well hidden. If I it make through all this, and I still have any energy left, even close to what I’ve had before, THAT is where I’m going to focus it.

It’s an unbelievable feeling to sit in a doctor’s office and be told you only have a short time to live and you’d best rush to get all your “ducks in a row” … but that’s nothing, it pales, in comparison to going home and telling your family. But wait, it gets even worse when you have to explain to your children. The words “Dad has cancer” just don’t want to come out of your mouth. They can’t, they stick somewhere between your heart and your brain and they dribble out of the corner of your mouth jumbled like a bag of bad letters in a Scrabble game.

Its amazing how poorly we’re prepared for an event like introducing cancer into a child’s world. Yet it’s so common. According to the state of Vermonts most recent online report on health statistics, there are more then 26,000 Vermonters currently living with some sort of cancer. Granted, they are all not life threatning, but they certainly are life altering … and wow! no support groups for the kids. That ain’t right my friends … that’s just not good enough.

Cancer is a “hard” word to most adults to say … they don’t want to hear. It’s absolutely terrifying to a child.

It’s gotten me angry.  Yeah, there are a few books and pamphlets out there … but that don’t cut it for kids.