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.

Thursday, September 24, 2009:

Sher and I started on the road at 8:00 am. Unfortunately, the night before I hadn’t gotten much sleep, not sure why that was, restlessness?, illness?, anxiety? … just an old fashioned poor nights sleep. Made it to Boston in reasonable time even though there was construction (road work) almost the whole trip. But as we approached the city line, traffic became very heavy. I had decided to drive the new Toyota because I wanted the “real” experience of what I’d be doing a few weeks from now by myself. It’s a standard shift car, so driving it is more physically demanding then the GMC Envoy.

The heavy traffic caused a bit of strain on me, shifting the five-speed transmission was no fun, and I was almost sorry I choose that car … but like I said, I wanted the knowledge to know that I’d be able to do this by myself in the following weeks to come.

For those of you that know Boston a little, Storrow Drive, is a parkway (which means traffic is restricted to cars only) that runs along the Charles River, and provides quick access to many downtown locations. Well, there wasn’t any quick access this morning! Not as bad as getting into NYC … but was just about as bad as Boston traffic can get.

As I got off the exit for the Medical Center (which is always a traffic-ky spot), I noticed a car trying to cut in front of me in order to get into the proper lane. I looked over at the driver and was about to wave to her and let her “sneak” in front of me, when suddenly she whipped off her head wrap or scarf to show me that she had no hair ( a chemo patient no doubt), and that I should let her go first, which I was already doing any ways. The traffic was at a stand still. I waved again for her to go ahead of me, when I noticed she looking at my handicap sticker hanging in the windshield. She rolled down her window and yelled something out like “I’m late for my appointment”. Again I hurriedly waved her on, traffic was getting ready to move. Then she said “are you going to the medical center too?”, Sher rolled down her window and said “yes” … she then replied, “well follow me then!” and sped off in front of us like a mad woman! Sher and I both laughed and we lost her in the traffic.

A few minutes later we were pulling into the Fruit Street Parking Garage to find a spot to park the car for a few hours. The parking garage is across the street from MGH’s Main Entrance, we made our way over and through the morning rush of cars and people getting into the massive buildings. I was moving a little slow, stiff from the long drive, I took my walking cane and moved as fast as I could to keep up with the flow.

This is the first time either Sher or I have been at Massachusetts General, it’s not the same building as the Proton Center. It’s older, bigger, busier and appears much less organized (not really though, I think it was me). For some reason I wasn’t able to get my bearing and felt kind of lost … but we did find the Cox Cancer Center in time for my appointment.

It’s strange, I’m very accustomed to getting around cities in general, but call it what you will, I was dis-oriented today and just couldn’t snap out of it. I felt like I was being pulled and pushed along and didn’t have a lot of control over what was happening. Just a weird frame of mind I guess.

We registered at the main desk of the Cancer Center and took a seat amoungst the many other patients that were there. Of course, as my luck would have it, they were issueing free H1N1 Flu shots today to all Cancer patients … so the place was extra packed.

As we sat down, we noticed that the woman who had tried to cut us off was there, and she came over to speak with us. She ended up, to say the least, to be a very funny, outward person that was getting treated for some kind of cancer.

As I looked around the waiting room, I thought of the book “One Flew Over The Cuckoo’s Nest”. Everyone seemed to be happy and chatting, but when they went in , got treated and returned … they were usually a lot quieter. Funny how your imagination can play tricks on your mind like that … if you want to call it a trick.

They had given me two bottles of Barium Sulfate (I think) to drink before the CT Scans, which was a nasty thing to drink on an empty stomach, early in the morning … but I did. When my time came, I got changed into a robe and followed the attendant down the old hallway into the room that held the scanner.

There was a young man and woman in the room that were going to run the tests on me. They introduced themselves and were very pleasant. They hooked up the IV with 3 doses of stuff in it and got started. I had had these injections before at Dartmouth but they were different. First a cold feeling, then heat, then a metallic tasting substance. All that along with the Barium drinks wasn’t pleasant experience. When the scanning was done, the woman said “OK, I’m going to give you four tattoos”, I said “really!”, said “yep, we have to tattoo the registration marks on you, so that the machines all line up exactly in the same place each time” … I said, “go for it” … so, I got four, small tattoos today! Two seem to be small dots and two are like + signs. They were very professional, very polite and helpful. Even with laying down on the scanning table can be a challenge and they were both very helpful.

What I didn’t realize last time I posted about this trip to Boston, was that all, this was simply for the treatments prior to the actual proton treatments. The Intensity-Modulated Radiation Therapy …. So there’s a lot more to go through before getting started on the proton! But at least it’s all underway. I do suggest that if you can avoid any of these things in your life, that you definitely avoid them.

Before we left, Doc Delaney came by and spoke with us briefly about the scans, and that they looked good and some scheduling things.

We left and drove back to Vermont.

Unfortunately, we did not get to visit the Hope Lodge, eat, or do anything else we had planned. But we did get done what we needed to. You can’t always get what you, but you do get what you need!

I have much more to write about this … but it’s late and I wanted to make a post this evening. Not sure if I’m going to work tomorrow, I’ll see what I feel like. Usually, the dyes and injections have that lovely diarrhea effect a few hours later.

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.

Well, today wasn’t the best health day I’ve ever had on this planet … but I did have an exciting conversation with my dear old friend Lydia Ratcliff. She is a wonderfully delightful 83 year old woman that has operated and managed her own working (and profitable) farm for last 40+ years. She lives at the very top of mountain in Andover, VT and is always fun to chat with. I just love her. Yep, she still does her own haying! … she still drives a tractor!

One of the things I love about talking with her is that no subject is un-discuss-able! There isn’t anything you can say that she doesn’t have prime knowledge about. Business, science, food, health, she a great chat.

For all these years she has developed a great little business for herself, and other “all natural farmers” raising meat animals. Her farm is full of goats, sheep, cows etc etc all being raised without chemicals and antibiotics … simply the finest meat that money can buy. When you eat a piece of lamb or goat from her farm, you realize that the meats you buy in the supermarket are of the absolute worst in quality. She does it the old-fashioned way, but with a ultra modern twist too!

Her small business supplies the finest restaurants in New York City and Boston, you just wouldn’t believe her client list, she serves the best of the best, and its all as natural as can be.

It’s more expensive then supermarket meat … but well worth the price! Besides, she has lots of years of storys to tell when you visit her. But don’t get me wrong … she’ as “with it” as any young person I know, and maybe even more so. I started to explain about the proton therapy, cyclotrons and all the other stuff that’s going on with me and she was well aware of what a proton was and that it was a positively charged hydrogen atom and the whole nine yards! … I was stunned to say the least.

For many years she reverse worked the genetics of a breed of goat that is now sold around the world. She developed and sells special goat sperm, for breeding goats that are for eating purposes. Have you ever eaten goat? … it’s totally delicious! Lydia is a special person, a one of a kind, and a great friend that I plan to visit before I go off to Boston for treatments.

She is one hell of an old lady!

Her old farmhouse is full of original furnishings including the wood cook stove, soap stone sinks, old plank floors … it’s all the real thing. The only modern addition I can think of is the indoor bathroom. I’ve been up to her farm many times and it still amazes me. When I visit her next, I’ll be sure to take some pics of her farm and post them here on the blog.

Howard, your poem was wonderful. I return one for you and Sandy to enjoy!

Hickory Dickory, Hey Doc!,
Times running out on my clock,
If we don’t get going,
It’s gonna start snowing,
and then I may have to stop.

Hickory Dickory Now Doc,
I can barely put on my sock,
And every morning,
I wake up still yawning,
Can no longer run ‘round the block.

It’s the H with a positive charge,
Cause the tumor is growing quite large,
But once we get going,
I know I’ll be glowing,
In the dark like an electrical charge.