Chondrosarcoma – ah shit, bob's sick

A Recollection Of The First Day Of Proton Therapy 2

It’s really an odd machine to say the least. In an attempt to give a simple non-visual explanation of what I saw and experienced, I’ll start off by saying that is wasn’t frightening, but it was an amazingly technical piece of equipment, and all the peripherals around it, made it feel like I was more in a science lab, then a hospital.

Here’s a pic I’ve published before to look at for reference and I’ll try and add some info as best I can.

This is the actual piece of equipment I’m being treated on at the center. This photo was taken at last year at the center, and it still looks exactly the same. The open door you see in the picture, is the hallway that leads to one of Doc’s offices, the waiting room and a bunch of small nurse’s examination rooms. My guess would be that about 10 – 15 people run this operation.

The huge, round, barrel shaped cylinder is about fifteen foot in diameter, and probably about eight feet deep, so it’s big. You can see that part of the ceiling and the flooring have been removed, in order for it to fit in the room.

The big piece, jutting into the cylinder, is basically equivalent to the barrel of a gun. That’s where the protons are blasted from that attack the tumor. Precision, precision, precision, is the key to this. They spend a long time setting your body into position and once again, marking your body with (this time), water-proof markers. My back looks sort of like a complex tic tac toe board. These marks, along with the permanent tattoos, I was given in IMRT, are all registration marks to help with alignment.

Again, as you can see in the pic, the board you lay down on is obviously on a track that slides (motorized), not only in and out of the tube, but also up and down to raise and lower your body closer to the barrel. It’s a very narrow board (as you can see) and it feels like you could take a dive off of it at any moment. I’m don’t know how they treat large people on these, but I barely had enough room to fit … and not a large person.

In my case, I was face down, they had a prop under my feet, and a piece for my face to fit into so that my head, back and feet were all at the same even level … laying flat, on my stomach. The piece that my face was in, didn’t allow me to see anything from this point forward.

They covered my back, and the back of legs (everything except my mid section) with what felt like small heavy blankets that I assume were protecting me from stray radiation. After moving my body into precise position (this took like 20 mins), they tell you not to move, and I mean NOT to move, otherwise it starts all over with the set up. They went off into another section of the room which protected from them any radiation, which is also where the controls are.

I could feel the table rise a foot or so, and then begin to slide deep into the tube. Now I was on the board, suspended deep inside the tube and in position. I could feel the table move to the left a little, to the right a little, up a little more etc etc. until it was perfectly aligned to whatever they needed.

Ah …. What now, I thought. I heard the machine start up (reasonably quiet unlike the IMRT) and maybe some spinning motion. But there was no variation in sound … just a steady running sound. With the IMRT treatments, I could tell each time they fired the radiation at me. The sound was similar to when you use your micro-wave oven at 50%, and clear sound of cycling on and off … not so here. Simply a nice steady hummm.

After a few minutes on the table, I felt the table start to line up into what I thought was another position, but to my surprise, I felt the blankets being removed and the technician saying, “OK … all done for today”, with a big smiling face.

“Wow … that’s it?” I said, “yep” was her reply … “Awesome” I thought. They placed my foot on the floor so that I didn’t mis-step and fall into the depths of the machine. I got dressed and off to see a nurse I went.

As I got dressed, I looked around the room and saw lot’s of interesting things that I’ll say for another post … but basically that was the treatment … I never felt a thing, no flash of light like from the IMRT, no loud noises … nothing, nada.

By the time I got to see the nurse (only about 3 to 5 mins.) I could feel a light swelling on my right hip or buttocks. She asked me all the standard questions along with quite a few “are you experiencing any mental confusion” questions. I didn’t expect those questions and I wasn’t experiencing any confusion at the time … so I replied “no”. I did tell her I felt swelling and a bit of pain in the tumor area and when we looked at it, I noticed a bit of redness and small beads of sweat sort of seeping out of the skin. Not necessarily painful, but some discomfort.

She applied some lotion, and had a pretty good sized questionnaire about the experience that we went through, and will go through after each treatment, and before I knew it, I was on my way back to Nahant.

On the drive, the swelling definitely increased along with the discomfort in my hip, and by the time I got home it was hurting a bit. I took a Vicoden and laid down for an hour and woke up basically fine. By the time evening rolled around the swelling was completely down.

The nurse and technicians both warned me not to do any heavy lifting or work especially over the weekend but also to prepare for that for the rest of my lifetime. Unfortunately, bone fragility is a permanent side-effect of proton therapy and apparently even the strength of your own muscles in your back and legs can be enough to crack and fracture your hips and tops of your legs bones.

My buddy Bill N. from Florida can attest to that.

All and all, the proton therapy was a breeze in comparison to IMRT (which personally, I hope I never have to go back to) … there was no illness, dizziness, no feeling sick. Just a little painkiller seemed to do the trick afterwards. That night I did take 30 mg of morphine and will probably be taking that for the for-see-able future … but that’s not bad.

As I left the office, I noticed 90% the children were gone, off to treatment or home, and the place seemed quiet and under control.

So, so far, so good. If it continues to be this simply I say, I got it licked.

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 …

6:36:24 AM
Thankfully, I feel better this morning. Not 100% … but much better. What happened over the last few days was this.

This past Monday, they increased the does of IMRT radiation therapy that I was receiving. I was well aware this was going to happen, they clearly warned me I may get extra tired. What they did’t clarify, was that it was going to basically stop me from functioning in entirety, and prevent me from doing anything but the very basic survival stuff, and then barely be able handle that (like getting to the bathroom,  keeping nutritional substances in my system, and the intense desire to drink an ocean full of water), and  yes, sleep I did. 

The term “extra sleepy” doesn’t quite accurately describe the effects of being radiated, physical ruination and mental disparity are much closer descriptions that ought to be used. Now I can start to understand how folks that exposed to heavier radiation feel, whether it’s from weapons systems, stockpiled bombs or your local hospital doesn’t matter … it can make you sicker then any flu, virus or just about anything you’ve experienced … and just think, I did this in a controlled, non-violent, hospital setting!

The last heavy dose I got was Wednesday, and I can feel it slowly working it’s way out of my system. Hopefully, by the end of today I’ll be somewhat back to normal … what ever that means.

This morning I have number two of the proton series of treatments, which if like yesterday, I expect will be a breeze in comparision.

More to come tonight ….

Just a real quick post tonight because I’m really tired.

I feel better then yesterday and although tired now, I did had a much better day today.

Proton Therapy went very well and was much less draining then IMRT … I actually started a long post about today’s experience … but am too tired to finish … so tomorrow I’ll post it up.

I did get a reasonable explanation for the exhaustion I’m experiencing and I did get some great medical scans from Doc today … but I need to study them and may need some medical advise to decipher them … but they are cool and I will have them on the blog soon … maybe Hallowee Night!

Until tomorrow then …

It’s Wednesday, and it’s been an uphill battle all day long just staying awake, as a matter of fact, I haven’t even done that. My day, if that’s what you want to call it,  has gone something like this:

Woke up at 5:30 am., and got ready to head in to Boston for my last IMRT treatment. I was feeling pretty good but a tad sleepy as though I hadn’t quite got enough sleep the night before. I chalked that up to not having enough coffee in the morning before I hit the highways that lead into town. I never have enough coffee anymore in the mornings, and that’s intentional because I found it impossible to lie perfectly still during the sessions, so I wait till after, and then have my fill of coffee afterwards. That’s been working fine all along, but today, I just couldn’t get the “sleepies” out of my head.

I got to IMRT slightly early (rainy, but light traffic), and to my surprise, which almost never happens, they were ready for me immediately. “Great”, I thought to myself, “I’ll be outta here before 8:30!”. Sure enough, by 8:20 am., I was back on the road to Nahant and all the traffic was on the other side, heading into the city.

The whole IMRT team was excited for me because today was my last day of treatment from them. Like a graduation, they all shook my hand, wished me well, told me to stop by any time and say hello and let them know how I was doing. Nice, what a great bunch of folks. They have a tough job there, maybe not physically, although they do work some rough hours at times, but the mental side of it is tough. All day long they deal with people like me, some better, some worse, but all of us are screwed up in ways you don’t always see from the outside. I’m thankful for what they’ve done … and told them so. I told them they were life savers … and they are.

About half way back, I started feeling sick, tired and drained. I could feel my stomach churning as though I hadn’t eaten in 3 days, which just wasn’t true. I had a great dinner last night … as a matter of fact, it was the first dinner I cooked myself while in Nahant. Herb was here, and we sort of looked at each other, and without saying anything, not a word,  as if through some sort of mental telepathy … we decided we were sick of eating out. I was feeling good at the time and volunteered to cook … and cook we did!

We quickly drove across the Causeway and bought two perfect steaks, fresh spinach, mushrooms, and some red potatos.  Here we are, two grown men in the super market, shoveling all this food into our shopping basket … like two kids in a candy shop. We rushed back, fired up the BBQ, and cooked a fine meal.

Anyways, I wasn’t feeling ill because I haven’t eaten. My appetite has been pretty good all along. Granted, I don’t eat three squares a day, but I never have. At best, I’ve always been a “skip” breakfast, light lunch, but good dinner person. Well, I have to add here that I often have several snacks in the evenings.

By the time, I got back to house, I was feeling really lousy. I mean maybe the worst I’ve felt since all this started. Now it was not only my stomach freaking out, but I was having waves of chills and sweats coming through me almost as fast as the waves were crashing on the beach. I walked in the house, called Sher (like I do every morning), told her I just ‘had’ to lay back down, and literally, crawled back into bed. It was about 9:30 am.

It was a windy, rainy day here on Nahant, gray and cold, and I pulled the blankets up over my head, and fell asleep in what seemed like instantly. Something (some noise outside from the wind) woke me at around eleven, and when I opened my eyes the room was spinning … you know that feeling, like you’d drank to much as a teenager. I had to reach out and hold on to the side of the bed to prevent myself, from what felt like, I’d falling off the thing. Damn, don’t you know it, I had to pee too! I tried to get up, but just couldn’t, I fell back asleep for another hour.

This time, when I awoke, the room had calmed down thankfully, and I got up, pee’d, drank a huge glass of water, and went back, once again, to sleep.

Finally, around two o’clock in the afternoon, I woke up and felt slightly better. The stomach thing, and the dizziness were gone, but I still wasn’t feeling quite right. I was soaking wet from the “sweats” and everything on body sort of hurt. I made another pot of coffee, thinking I’d start my day over, because this was no kind of day to live, to begin with. I decided I’d try and shower and shave, you know, literally start the day over.

Shaving was painful, I know that sounds insane to declare that I could painfully feel the razor cutting every, single whisker on my face … but I could. It actually hurt to shave my head and face. So much in fact, that I didn’t even finish the job.

“What the hell”, I thought … “what’s going on?”. I just couldn’t snap out of it, I’ve had bad days before, but my goodness we all have … but this was awful, and is lasting all day!. “did they zap me incorrectly in treatment today?”, “am I getting H1N1 flu?”, “am I dying, right here, right now?”. I took a few painkiller and went back to bed.

As I laid there, I started thinking about how many days in the future I may have like this, and what I should, would, or could, do about them. It’s scary to think that on any given day, I could feel like this. Without any warning, without any reason, without a way of dealing with it. How do I conduct business, work, make appointments etc etc., never knowing if I trust myself to complete the days tasks at hand.

What a frightening future. A day, in a life with cancer … is that what I experienced today?

It’s difficult to explain, what a pain, in your bone feels like. I realized later in the day, that the pain that rips through my bone, is the primary pain, and that the stomach pain,  nausea, sweats, dizziness, and all the other crap that’s goes with it, are mere side-effects of the bone pain.

Often, while I’m on the treatment machines, deep in my mind, as the buzzing sounds click in and the intense radio waves are running through me, I imagine (in my mind), that I’m scooping up the cancer cells (or their energy) and swirling them around and around, like mixing chocolate pudding,  and sending them in a downward spiral, into an abyss, well below the surface of the earth. Sometimes, I can get them as far as the earth’s burning iron core, where they are destroyed forever.

I can feel them leaving my body, or I should say, losing their grip on my body, rattled and confused from the intense radio waves, they let go for a moment. During this fleeting moment, I have control over them! … and it allows me, to rid them, from my body.

Tomorrow, the real heavy proton therapy begins, at 11:00 am. The band, begins at 10 to 6, when Mr. K. performs his tricks, without a sound.
No food or drinks will be served.

Tickets are on sale at the front desk and all proceeds will be donated the Egg Rock Bird Sanctuary.

I’ve written for an hour now … I’m going back to bed.