Chondrosarcoma – ah shit, bob's sick

Monday, October 05, 2009:

Sorry for not posting the last few days. Besides having computer problems, treatments and appointments have been taking much more time then expected. City traffic, lack of knowledge of the roads, and extremely windy, rainy weather have all played a role in this adventure.

Monday, the drive down towards the Boston area, was lonely. I’ve made this trip many times in the past, but it never felt like it did today. Even the music on the radio sounded lonely. It was depressing and for some reason I just could snap out of it. I felt like crying several times.

There was no reason for it to be honest. I’ve waited for this for almost 3 months, you’d think I’d be all excited, but it just wasn’t that way. The drive seemed to take forever and as the wind blew the fall leaves across the road in front of my car, I just simply felt scared and alone. Now I know that’s not true. I have so many folks behind on this … but it is, the way I felt.

I got a hotel room around 3:00pm and settled in. I couldn’t get my pc on the hotel network, and after trying for a few hours, and losing my patience, I decided to go get some much needed food. Had a great meal at a place called “Wild Willys” … a simple hamburger place, but they made really great burgers with just about anything you could think of on top. Of course I went for something outlandish like guacamole. Went back to the hotel and fell asleep.

Tuesday, October 06, 2009:

Got up at 5am, packed everything and headed off to Massachusetts General Hospital (MGH). I used the valet parking because it was much easier a walk, then using the elevators and hallways that lead down to the street level where I had to go.

Now even the walk I did have from parking to the Cox Cancer Center is really long … I mean it’s long even for those in good health, let alone those with cancer. I wondered why they did that … usually, places are aware that cancer patients often have trouble getting around and usually try to make things easier if anything. I should mention here, that there is a much easier approach, I just didn’t know it at the time.

So, it’s Tuesday morning and I’m at the cancer center.  They take me almost immediately after checking in. I have a card that’s kind of like a credit card except it has a bar code on it … like when you buy something at the grocery store. Each morning, when I go in, I run my card under the scanner and that checks me in and lets them know I’m ready. 

Tuesday, was basically another dry run. They drew green and blue lines on my back, lined them up the black colored tattoos (that they gave last week), and did a few runs in and out of the machine. This is the third dry run. Perfection is the key here … no mistakes allowed in these treatments.

See, you sit on a hard as hell table, in a freezing cold room. Your face is placed in a molded piece of foam (laying on your stomach), and they move the table electronically back and forth until your in the right position (seems to take 3 or 4 tries), then by yanking on the blanket beneath you, they adjust the left and right position. Kind of rolling your body until you land just right. Like dead weight. They use the weight of your body to get it exact. No matter how many times they have to move you … they do it.

Once you’re lined up, they lift your robe and start playing with the crayons! They mark out all the registrations, make the plan again, but never actually turn the machine on to blast you.

After an hour or so of this, they simply sent me home … to be continued.

It’s 10:30 pm and I’m just sitting down to write this evening’s post. I’m also eating a big slice of fresh, homemade Apple Pie that someone so graciously brought by the house today! It’s awesome … thank you so much . You ought to be selling these pies!

It appears that most of the Boston rooming issues may have been solved … and that is awesome and not a moment too soon.

I’ll be re-publishing a new treatment schedule towards the end of this week. With a few important changes. Hopefully, that’ll be the last change in scheduling I have to deal with.

Think about this … next week around this time I’ll be heading towards Boston for the first set of Intensity-Modulated Radiation Therapy. I hope to be posting daily about these treatments! Yikes … the time is getting close.

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.

It looks like Sher and my patient navigator have come up with possible living quarters (about 99% sure) for me in Boston. The Hope Lodge is where I may be staying. The Hope Lodge is funded in part by AstraZeneca , the American Cancer Society, and private donations. All the necessary paper work has been filled out and submitted and we await the answer. We tried to do this through Blue Cross but they began to hassle us again with another weird set of impossible rules to follow. I plan to check the Hope Lodge out on Thursday when I go for the Proton Planning Session.

Wednesday 8am, is the time set for the oil change … this way I’m all set for travel to and from Boston.

I want to thank Howard and Sandy C. for their generous offers of help today … at the moment, we’re OK.

I’m decided to slowly design a real “Proton Power” T-shirt, and will start that while in Boston.

Treatments may end on the week of Dec. 11th … I’ll be finding out shortly.

So, all and all, it appears things are beginning to calm down with getting organized enough to make these treatments really happen. That’s a good thing because I feel they’ll be “buying” me some time, and that’s great for Sher and Alberic … and me!

Soon it’ll be time to start the treatment process … can you imagine!? … all this just to prepare.