Chondrosarcoma – ah shit, bob's sick

Today, I got my first actual IMRT treatment. I arrived at 9am. Made the trek, by following the signs for Cancer Center (that’s kind of scary in itself actually), registered and sat down to wait. An old Cuban dude came out to and introduced himself as J.C. and asked that I follow him through the radiation department. Very nice man, big smile, gentle and well mannered. He asked me where I was from, and when I said Vermont, he said I must be “wealthy”. Then he asked where I was staying, and when I replied Nahant … he said “really wealthy” … of course, smiling and laughing all the time. I’ll be seeing JC every week day for the next 3 weeks of IMRT treatment.

I settled down on that cold hard table again as they lined me up like they had the day before, but with one exception …  this time it was for real. After crayon time, they asked if I were ready. I replied yes. They told me they would be able to hear me from the other room and at anytime and if I wanted to stop, just say so. They walked behind a glass paneled room and I heard the machine “fire up”.

Different noises this time.

Now, you have to use your imagination for this, but here’s how it went. Picture the sound of a huge microwave oven. You know that sound when it cycles on and off … not the fan sound … but the power draw sound. Except loud … really loud. Twenty or so minutes of this, cycle on, cycle off, cycle on, cycle off.  I really felt like I was being cooked, and I guess I was in some sense. There was a slight tingling sensation on my skin, but the sound made me jump! I never expected it to be so loud … they should have warned me, especially being in treatment for the first time.

Here we go again, re-alignment became necessary and we stopped and started all over again.

After 20 mins or so, they came over undid me from the table and said “see you tomorrow”. I slowly got up, being a little dizzy from laying down, got dressed, and down the hall I went.

As I walked, I could feel the tumor kind of complaining. Now they clearly told me (and more then once), that there were no “side effects” from this type of treatment, and I fully agree with them. My hair isn’t falling out, and it’s dark in here while I’m writing this and I can’t see any glow. But what they didn’t tell me is that there were regular effects from it. Yep, I literally feel micro-waved, not sick, not vomiting … just plain and simple, micro-waved. I can actually feel the heat generated by the treatment coming out of the tumor!

I got back to the house I’m staying at in Nahant around lunch time, took a nap and woke up hungry. I went out to the local Golf club for dinner with the gentleman that owns this great house, came back, and here I am writing.

Now tomorrow, I have to do the same thing except earlier in the morning. My treatments are at 8am …but hey, then the rest of the day is mine!

My computers are all fixed and ready to work … so hey, I’m in good shape considering what it could’ve been like. The only hard thing about this entire trip was, that initial drive out here. That feeling of loneliness and abandonment, which was never true in the first place. I have so many people going through this with me, that I really never, ever alone. It just felt that way while driving into something I totally didn’t understand.

The folks here at Nahant are simply unbelievably generous, friendly and understanding. What more could a person ask for?

Tomorrow, I hope to write about the place where I’m staying and if it’s a nice day take and post a few pics.

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.