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 …

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.

One of the things that’s been driving me crazy from the get-go of this cancer thing, is that there seems to be “0″ as in zero, support or support groups, for young children with a parent that has cancer. If there are any, they awfully well hidden. If I it make through all this, and I still have any energy left, even close to what I’ve had before, THAT is where I’m going to focus it.

It’s an unbelievable feeling to sit in a doctor’s office and be told you only have a short time to live and you’d best rush to get all your “ducks in a row” … but that’s nothing, it pales, in comparison to going home and telling your family. But wait, it gets even worse when you have to explain to your children. The words “Dad has cancer” just don’t want to come out of your mouth. They can’t, they stick somewhere between your heart and your brain and they dribble out of the corner of your mouth jumbled like a bag of bad letters in a Scrabble game.

Its amazing how poorly we’re prepared for an event like introducing cancer into a child’s world. Yet it’s so common. According to the state of Vermonts most recent online report on health statistics, there are more then 26,000 Vermonters currently living with some sort of cancer. Granted, they are all not life threatning, but they certainly are life altering … and wow! no support groups for the kids. That ain’t right my friends … that’s just not good enough.

Cancer is a “hard” word to most adults to say … they don’t want to hear. It’s absolutely terrifying to a child.

It’s gotten me angry.  Yeah, there are a few books and pamphlets out there … but that don’t cut it for kids.

Wednesday Evening (10:00pm) 8/19/2009

I’m heading for the circus in the morning!

Tomorrow, (Thursday) is a big big day! At 7:00am in the morning they want to CT scan me for more cancer in my body … then they want to take some blood samples too. But why 7 in the morning I ask.

Now let’s see, I live about an hour from the hospital, so that means I have to leave the house by 6am … but I have to be awake enough to drive too so that means I have to get up about 5am … but wait, I’ll want to take a shower before going to see the doctors … so now we’re talking about 4:30am … now how’s this good for me? … oh wait, I can’t have my coffee either. This is cruelty my friend … it’s a conspiracy to make the sick, sicker I tell you. But I do get to drink some liquid garbage so the scans are clearer.

Before I had this cancer I didn’t do 7am well … what the hell’s the hurry? They’re making me feel crappier keeping these appointments.

Everything seems to be “rush rush rush” …. until its vacation time for the Doc or some other thing. I may not have much of life left … but I still have a life … and I want to live it.

This is the last ridiculous appointment I’m keeping. You hear that Doc? … “I ain’t doing this no more, no way!” … it’s too disruptive to me, my entire household … even my dog is upset! No more early stuff … let’s do it after dinner from now on.

If I continue to keep this schedule up, it’s going to insure that I spend time in hospital … from exhaustion!

I have to go to work too you know, it’s not easy to program on a tired mind.

This is one of the hardest things I’ve done in my 56 years of life.  It comes in 3 stages kind of, or at least it did for me. Some of it … I just couldn’t do. Luckily for me, my spouse offered … and that was unbelievably helpful and something I will not forget as long as I live.

My first reaction was that I didn’t want to tell anyone I knew, whether friend, family, folks at work, children …. even the local folks in the grocery store and places like that. We live in a small town where everyone knows everyone, so its impossible to keep quiet for any length of time. I don’t know why I didn’t want to tell people … maybe it was fear of rejection, or losing friendships and acquaintences. I really can’t say why … but it is the way I felt.

Getting down to business:

First off, there’s your friends and folks at work.  One of the odd things about this, is that I had just started a new job … and when I say just … I mean like 2 weeks into it. The folks where I work were so nice even just to hire me … so it felt really awkward. I didn’t know these folks and here I am telling them that I can no longer do the job I was hired for … man, I was scared … but I had to do it.

Then I had my friends. Being a programmer, business owner, artist I have had dealings with lots and lots of people online. I like to keep in touch with folks when they move away or switch jobs … you know, you end up with a slew of friends all around the globe these days.

I am a person who values his friendships … once a friend, always a friend. Even if I don’t speak or write to someone for a year or two it doesn’t mean our friendship is gone …. it’s understood. Friends are friends.

But, as friends and co-workers  started to hear the news of my diagnosis, I was surprised at how easily and wonderfully they accepted it. My co-workers, even though I hardly knew them, reached to help and help in a big way. My friends did the same. As a matter of fact, I recieved so much help and offers of help, that I just couldn’t believe it. I thank them all, and love them all for it.