Chondrosarcoma – ah shit, bob's sick

A Recollection Of The First Day Of Proton Therapy

At around 10 am. this past Thursday morning (Oct 29, 2009), as drove up Storrow Drive in an attempt to make my first real proton treatment a little ahead of schedule, I got off at the Medical Center exit and rounded the corner and slowed down knowing I wasn’t going to make the light. That placed me at the corner of Grove St. and Cambridge and immediately my mind went into high gear thinking about the last post I’d written about Grove St.

Here I was again, watching, waiting for the light to change for what seemed like an hour. The whole memory seemed to flash by like a high speed film … well, a nightmare really. I just can’t seem to get that image out of my head, I also seem to hit that damn light every time I’m near it … and now being in the proton program there is no avoiding it. I have to pass through everyday, and every time I do … it sets my mind on fire.

Today was no different, I waited and watched them cross the small street and head down the path, yeah, I knew where they were going, and I was right behind. The difference was, that this time, I was a little more prepared. Prepared in the sense that I wasn’t new to cancer treatment any longer, I’d already been through all the IMRT stuff and the proton therapy was supposed to be even gentler on my mind and body. Now I starting to know my way around a bit, familiar with some places and folks in MGH and was at least comfortable enough not to feel lost in the tall building that line both sides of block.

Happy to be finished with IMRT and all the effects (even though there are’t any side-effects)it was having on me. I spent the last three days continuously feeling sea sick, physically drained and even a touch of mental confusion, and I don’t add the mental confusion part lightly. I take pride in my mind, I’m proud of the fact that learning new things, retaining information and a what I’d consider a decent memory, all came easy for me, and still I’ve always been able to hold onto a reasonable creative edge that allowed me add some artistic value to my work.

So if the worst thing I had to face in the new proton therapy was passing through Grove St. everyday, I basically thought I had it licked, a breeze, I’ll slide right through this treatment, this time. Experienced right? … solid, confident in knowing my way around and knowing just about exactly what I was in for.

The light changed and I made the turn on to Grove, and was making my way through to the Yawkey Valet parking area. It’s a small and narrow street, so narrow, and always full of people walking, … doctors, nurses, guards, patients, even construction dudes working on the building at the end of the block. It’s always busy, MGH Campus runs twenty-four hours a day and everything from delivery trucks to limo’s drive down it.

I dropped my car at the valet and had to walk about two buildings back, from the direction I’d just drove in from. No problem, I was cool, I made my way through the people, bumping shoulders, side stepping, twisting left, then to the right, and even occasionally looking into some of their faces, wondering what role they played in this doctor-patient world that I didn’t really knew existed 2 months ago. Well, I knew it existed, but never thought I’d be so involved in, not so quickly and deeply.

I found the Francis Burr Proton Center and slipped under the scaffolding that seems to have been there forever. It straddles the entire sidewalk and rises about 40 feet above it, lined with plywood boards and planks, well, you know the type I’m talking about, you can see it almost any city, and Beantown being no exception.

I reached the two huge glass doors and they opened up as if I’d said “Open Sesame”, like from Ali Baba and the Forty Thieves. The odd thing was, out of that entire side walk, with literally hundreds of people passing at any moment, I seemed to be the only one entering at the moment, or leaving for that matter. I stepped into the huge lobby, and stood alone under the twenty plus foot ceiling alone. Just me and a huge lobby wall map that showed all the offices, suites, gardens, restaurants, you name it, this building has it. It’s huge by any standard.

Stepped into the elevator and pressed the “T” button. OK, what the hell is a “T” button on an elevator? All the others are numbers or things like “LL” for the lower levels, but “T”?

The T floor is for Treatment. Yep, they keep that 150 million dollar cyclotron that I was about to get my first ride on, deep in the basement. One of only 4 operational Proton Therapy clinics in the US, the Francis H. Burr Center’s cyclotron (built by the Belgian company IBA) and is one of the world’s premier centers for radiation oncology.

There I was, alone on the elevator too, my stomach getting that all too familiar feeling that one gets when traveling downward at a quicker then natural speed, almost falling.

As the doors began to open, I heard music. Acoustic guitar strumming to be precise, and a bongo drum. Before the door opened entirely, I recognized the music to have a folk sound. Folk music? A woman singing too! As the door opened the only thing I could see on the other was another elevator door.

Cool, I thought. Solid, strong and confident me stepped out into the hallway and turned to left, took one step, and stopped dead in my tracks.

Now I don’t like to use the word “dead” much these days. I’m kind of “touchy” about it, you know, it hits close to home when hear it. To be honest a lot of things are now sensitive to me that weren’t before. Actually, and I’m not sure why … but even the Halloween stuff I see around bothers me. I don’t like looking at skeletons anymore, they remind me of X-rays and scans. They’re scary, after-all that the way my cancer was discovered. First time I saw it, it was on scan and I’ve seen a million scans and x-rays lately. Not that I run away from Halloween fun, I just don’t see it as I once did. Some of the masks show fear, or I think about the “eyes” behind the mask and it just kind of freaks me.

I looked down the hall and at that very moment, all the thoughts about Halloween, Protons, being alone, being dead … left my mind and flew out the window like a small sparrow that had been held. There was a whole group of kids, maybe twenty five or thirty, all mixed ages, nationalities, colors, all sitting on the floor listening to two female folk singers. Some singing along, some rocking back and forth, some on parents laps and some just staring into space.

These were all the cancer kids and it brought my heart to a screeching halt. All those feelings of self pity and all the crap I’ve been writing about just exploded in my mind. I know why they were all here, I knew and still had trouble excepting that all these kids were in as much trouble as I am.

Such a chill ran through me that nothing else seemed to matter. Yeah, it was kids day at the center, and they treat a slew of them, in all different stages, and with a variety of cancers that will get them in the end. The cancer will win on 90% of these kids. “God”, I thought to myself, “I really am lucky, so lucky, look at all I’ve done already. Fifty-six years of fun and life, yeah, there’s been good and bad times, like everyone, but at least I had “times” to remember … do these kids have that?

Those that sang, sang as sweet as any group of children and the voices of the two females sounded so wonderful, and at the same time haunting. The big tough me was brought to a new level of humble-ism that I didn’t know existed. So nice to see and hear, yet so frightening and scary that my mind simple went blank. At another time in life I would’ve jumped in and sang too … I just couldn’t do it. And at the moment, I hated myself for it.

How could anything they do to me inside the proton center matter now? “I hate Grove St.”, everytime I come here I get slammed by something more emotionally powerful then the last time. Every time I think I’ve mastered, been in control of, or at least had a handle on what I was doing here with this cancer stuff, Grove St throws something at me that just humbles me and hits like a real ton of bricks … literally.

My heart just got torn out by seeing these kids with leukemia’s, cancers and who knows what else, and you know damn well they heading down a dead end street, and I’m worried about me! “You useless, greedy bastard, how could you even be think about yourself when in front of your own eyes, you can see something so much sadder and powerful then your own little problems?”

Well that straightened my head right out, no more worrying, just go right in and do it. I registered at the desk, ran my card through the scanner, and spoke with Paul. Paul is the gentleman that runs the office. He is one of the most organize-able people on this planet, he knows every patient by name, adult and kid, and greets them with a warming smile and whatever information they want or need to know , he has in his head and often can tell you before you even ask for it.

Of course, to make matters a little more confusing “feelings wise”, Paul was dressing in skeletons outfit for Halloween!

My emotions were up, down, left, right and swirling when I eventually walked into the room where the proton machine was setup. I looked at this huge monster, this frankenstien of a machine and of course the only thing I could see were kids strapped to it, hanging in the middle of it on the treatment board!

I settled my mind as best I could and proceeded to take off my jacket and shoes. Three technicians introduced themselves and started to explain what I should expect out of this treatment today.

I looked around the room as they spoke to me, trying to catch a glimpse of all the equipment before lying down on the treatment board and being driven out into the center of the huge tube that houses the barrel, that releases the bouncing, high speed protons at your skin.

To be continued …