Chondrosarcoma – ah shit, bob's sick

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.

Well, here I am in Boston again, and although I enjoy some aspects of city life, and I know that I’m here for the distinct purpose of healing, I still miss being home and in Vermont.  Truth is, I thought as the weeks went by, that traveling and being away from home would get easier, but actually, it’s become more difficult.

Each week it becomes harder to pack up and leave for Beantown.

Now don’t misunderstand, I’m in a beautiful home, on a wonderful island, with great and caring people, and there is absolutely nothing more that I could ask for or need, during my stay here. I have never met a more generous, caring couple then the folks I’m staying with … I mean that, and Boston is great town to be in.

I also feel I’m getting the best care possible at the Cancer Center, Proton Center and MGH … no doubt about it. I have full faith in the docs and technicians that work on me everyday. Oh man … I even have a parking attendant!

But some how, when it comes time to leave Vermont, it saddens me, and it’s hard to pick out a reason why … It’s a blues thing I guess. I mean all I have to do is drive to Boston, get treated, do some work, and drive back to Vermont, right?, so simple, … but it ain’t really like that, there’s more too it then meets the eye.

To start with, that damn drive is long and lonely, and even though I’ve made it a million times, it seems to get longer every week. Since I’m never really excited about going in the first place, even the tunes on the radio don’t cut it.  Most long drives seem to get shorter after making them several times … but this one, just isn’t that way. It gets longer.

Then you have to think about what it is, I have to face when I get there … you know, I’m not playing tourist, or going shopping here in Boston … no, no, no … there’s no stopping on Newbury Street.  I’ve signed up for a kind of experiment, and I have to put my fair amount of time into that. Notice I said “I have to” … I have to because of the not so pretty alternative I’d be facing if I didn’t. So yeah, the drive may suck … but the treatments aren’t any joy either.

So now I have a crappy drive to deal with, and not exactly a fun time when I do get to my destination … and just think, I have to pay money for all this too!  These damn trips just keep getting better don’t they?

I shouldn’t really complain though …. but it’s the way my mind works, maybe that’s what helps me get through all this … complaining.
Do I even have a right to complain?

Look at all the things I have going for me. I have a group of folks at the Proton Center dedicated to making the rest of my life is worth living. I have the absolutely best doctor in the field, … lots of friends and family helping me through this. I mean why the hell am I complaining?

Sorry, maybe you should forget you even read this post … or better yet how about this:

The sandwich I had for lunch today, really sucked!

Oh my … I feel so much better now …  good night all … sweet dreams!

I woke up at 4:30 am this morning, showered, shaved, and started to pack up my computers and clothes for the return trip to Vermont. I could hear the wind blowing out side and was stunned when I went out to load the car up that there was an intense wind and rain storm over Nahant. The rain was driving side ways and burnt as it hit my face. It was cold too … maybe 36 to 40 degrees … just the right temperature for the aches and pains that I’ve been feeling lately.

As I crossed the causeway to the mainland, I looked over at the bay and saw nothing but white capped waves as far as my eyes could see, crashing against any and everything in their path. Boats were rocking and I could see the large rocks that are out in the bay almost being engulfed by the waves. Even the seagulls were having a tough time controlling their flight. I could tell that during the night, some degree of beach erosion was already having an effect along the length of the causeway. Now I know why the house I’m staying at is called “Dashing Rock”.

Traveling only at forty-five mph, the wind had more control over my car then I did! Yikes! … I forgot what it was like to live near the ocean and how different stormy conditions are in areas that are exposed to the ocean. Very intense drive into the city.

Today’s treatment was a breeze (no pun intended), I was back on the road heading towards Vermont by 8:45am. I passed through a few areas that had gotten their first dusting of snow … but traveling went easy and I made it back in a timely manner, only stopping once for a quick pee and a coffee. Things went so well, but like every morning I can’t help but think of the others there also, … who are they? what’s their story? what’s their life like? Young, old and I almost never see the same person there more then once …. which makes me wonder. I really expected to see the same people every day, but that’s not the way it is. I never see the same people … it seems I’m the only one coming day after day to get treatments. I know that can’t be true … but they set you on a regular schedule … it’s strange to say the least.

So anyway, I driving back listening to the radio and on comes Johnny Cash’s version of “I Won’t Back Down”. Originally written by Tom Petty and Jeff Lynne (I believe, correct me if I’m wrong). It’s such a powerful song that tears filled my eyes as I sang the words to a song I’ve known for a long time, it seemed so fitting after spending the last few nights writing about the “positive thought” issue. The thought of the other cancer patients at the center ripped through my mind as the song played and it just became to overwhelming to drive.

Cash’s voice and lyrics went right through me like an electrical shock, that I had to slow down and move out of the fast lane cause the tears in my eyes were causing my vision to blur. Yep, a song can do that to you when it hits home and Cash’s version did just that.

For those that of you that aren’t familiar with the song here are some of the lyrics:

Well I won’t back down,

No I won’t back down,

You can stand me up at the gates of hell,

But I won’t back down.

No I’ll stand my ground, won’t be turned around,

And I’ll keep this world from draggin me down,

gonna stand my ground,

… and I won’t back down.

Chorus:

(I won’t back down…)

Hey baby, there ain’t no easy way out

(and I won’t back down…)

hey I will stand my ground

and I won’t back down

Well I know what’s right, I got just one life

in a world that keeps on pushin me around

but I’ll stand my ground

…and I won’t back down

It was the lines that read “Well I know what’s right, I got just one life ” and “Hey baby, there ain’t no easy way out” that struck home for me. I’ve heard this song a million times before this bout with cancer, but it never meant what it meant today before. Powerful and disturbing at the same time.

I got home at noon time and took a 5 hour nap.

Did you see Keith Oberman’s piece on Health Care tonight? … Wow! …. Maybe now you understand more about my situation.

We’ve all heard that before right? Well think about this for a while.

There are two things that drove me to write this evening’s post. It’s funny that sometimes one little sentence or statement can be a driving force for a person to do something, or write something that otherwise they may have never done or said.

Although the two comments aren’t really related in any way, in another way, they are. They came from two different discussions, about two different topics and somehow they are both so important, that they became the driving force for me to write tonight, and not just this post, but this entire blog and to keep it going.

First off, let me explain to those that didn’t know they could even leave me a comment here, how it works. In order to read comments that folks have made on a post, you simply have to click the title of the post and it’ll refresh the page with the comments at the bottom. I should also mention that only folks that have an account on the site, can leave comments. You can get an account simply by following the instructions on the Contacting Bob page. I did this so that keeping spammers out of the blog was easier, faster and less of a pain in the butt. It’s important to me that all comments on this blog are real and that no spammers get in. This blog is now my “living art”, and I want to keep it that way for as long as I have the energy to keep it up. I do consider this blog very important, not only to myself but others in similar situations.

The first thing, was a comment on Friday’s post from my long time friend and buddy Ray L. (http://www.streamingoldies.com). Now understand that the relationship I have with Ray, covers a huge, oh what’s the word I want … a huge area of my life. I mean everything from business to arguments to, you name it, we’ve been through it together. I have the utmost respect for Ray and I know that he has the same for me. We are friends for life and that’s that.

Ray’s comment went like this:

“I hope you truly realize how important this blog is to those of us who deeply care about you. Frankly I don’t know how you have the energy to write (and in such exquisite detail) the events of each day but reading it has become the way I end my day. Knowing you’re doing okay makes us all feel a little bit better.”

I replied quickly, early that morning BC (before coffee), and have been thinking about my reply, on and off ever since.  Part of my reply was:

“I only wish I had more time to dedicate to this type of writing. I’d love to spend the rest of MY days, talking, writing and interviewing others, about “life with cancer” , and publishing their “real” stories too, with “no holds barred” detail”.

The second thing, that drove me to this post was an email from my dear friend Rose in Sweden, that is dealing with a similar situation in her life … and dealing with it for a full thirteen years. Although Rose and I have never met in person (we have spoke on the phone), I feel like we have, and that she has been a friend all my life. We have a powerful email relationship that has been going on for years and have confided in many of life’s experiences, both good and bad, with each other. She is without a doubt a most powerful and inspirational woman, I am proud and honored to know her. She is a special person.

Rose had sent me an email saying (amongst other things), that this coming Wednesday, she was returning to the doctors who, had not long ago, performed a throat surgery for tumors in her throat, to discuss whether the tumors were benign or malignant, and what this holds for the future.

Rose has a history of brain tumors that were discovered in 1994 and has been battling this stuff ever since. Like me, she has had to alter her life, and learn to live a day at a time. As a matter of fact, it was Rose that suggested that I live that way … and she was right!

I replied to Rose in part:

“Sorry to hear you have to go through that experience. I have had similar appointments and to be honest, sometimes I just don’t want to know! …. what will it change? … what good will the knowledge do? …. but other times I think, well if they catch something in time, they may be able to “buy me more time” from it.

So it’s a toss up … “to know, or not to know, that is the question” … almost a famous quote?.”

Like my comment to Ray, this kept echoing in my mind all day also, “to know, or not to know, that is the question” …

So, I want to reply in detail to both my friends, what I truly meant by my comments.

I had replied to Ray basically that:

“I only wish I had more time to dedicate to this type of writing. I’d love to spend the rest of MY days, talking, writing and interviewing others, about “life with cancer” , and publishing their “real” stories too, with “no holds barred” detail”.

All day long that statement has been running through my mind, what a powerful thought it was, but it led to other common sense questions.

Could I really do that?

Could I really spend the rest of my life dealing with other people’s stories (including my own), about their individual cancers and the struggle they have controlling life as their clocks keep ticking?

The struggle in family life, the financial struggle and the personal struggle that simply crushes any dreams and plans you may have made about retirement, vacations and all the like?

The absolutely mind-boggling effects that these treatments have on your body and mind, and maybe more importantly, the constant barrage of tests that are done, to determine if what they’re doing, is actually doing any good?

Could I really do that?

You bet your “sweet patooties” I could. Not only that, but I’d love doing it too. I truly feel there isn’t enough of this type material (for all age groups) to read out there. The point is, cancer can happen to anyone. It doesn’t matter if your wealthy or poor, republican or democrat, black or white, if you speak English or Spanish, young or old, male or female … none of that matters. None of it at all, it can just happen to you like it happened to me. You can sit back your whole life and say, “man, I’m so lucky that I’m not like that” … and then wack! One day (repeat), in one day, you are.

My thing is, that there isn’t enough of these stories being told by the people that experience it, and for the others to even understand what they ought to be looking out for, or be aware of.

Look at me for example, a measly two weeks before I was diagnosed with cancer I was fine. I was working every week in NYC and Boston … yep, driving down there every week. I had just bought a new car (standard shift too), I just signed on to a new job. I was going “full guns ahead”! Fifty-six years old, and in fine health … and in one day, in one conversation, all that changed and I started to get sick.

I know that sounds impossible, and it was just as impossible for my mind to accept it.

This is an unbelievable but true statement. Before going to the Cox Cancer Center at MGH for treatments, I used to drive by it every week (on Fridays). I’d stop at the traffic light on the corner of Grove Street and let the cancer patients take their time crossing the street to enter the doors of the Main Building of the campus. I remember thinking, as though it was yesterday, “I’m so lucky to be healthy, what would life be like that … those poor people … how do they do it?, day in, and day out. God, I’d want to die if I ever got like that”.

KaBooooom! Here I am, 2 months later. Now I’m crossing Grove Street, waiting for the traffic to clear so I can slowly make my way to other side. Weird you say? … yes, but 100% true. Now I’m one of them.

Sometimes, it makes me think I was meant to experience this for some, yet unknown, purpose. How could it be, that I lived on both sides of Grove Street within a few months? I’ll never know why, but what I do know, is that I’m driven and compelled to tell this story for a purpose. Somewhere, someday, somehow … it’ll pay off for some one.

So yeah, if I could, if I could financially afford to go and interview, talk to, record and write about people with real cancer issues, I would. I would make it my new life’s mission. And believe me, they all have a story as powerful as mine to tell. I’m not special, I’m just another statistic on the broader picture of the world health issues we’re facing today and more people should be aware of that.

Rose’s reply is different.  Does a cancer patient really want to know, if the treatments or drugs they are using or receiving, are doing any good? … and if so, does/will it make any difference to them?

For the rest of our lives, both Rose and I (and all others like us), have to receive full body scans every either 3, 4, or 6 months. The purpose of this is pretty obvious, the doctors are out to get an early jump on anything else that may pop up. Like another cancer, or more of the same cancer, tumors … whatever.

I asked myself, well do I really want to know that at this point. They’ve already told me that if these treatments do not halt the growth of my cancer, there isn’t much else they can do except make it as comfortable as possible for me … so do I really want to know that? Frankly, I don’t think I give a damn at this point. What the hells the purpose?

It’s not going to scare me anymore, I’ve already been there, and done that. I don’t think it’s going to shake up my friends and family anymore, they’ve already got an understanding. So why bother? …. Why drill it into a person that already understands their time is limited (we all are anyway in a sense).

When you have something like this, you start to look at life and the time you have left a little differently then you used to. I used to think “gee, I’ll rent this place for next years vacation too”, or “the next time I buy a new car, I’ll get a convertible”. No, no, no … you don’t think like that any longer when you have cancer. I don’t even think about what I might want for lunch tomorrow. First, I wait till I wake up that day, and then I might think about lunch.

However, that is one of the benefits of still being able to work. Work does force a perspective of tomorrow on you and that is a good thing … but for many, there is no more work. I’m lucky there, I have plenty of work and a whole group of folks rooting for me. Rose was forced to retire. Point is, does it really matter?

To me, it doesn’t. Believe me, now I’m in tune, I’ll know if I’m getting sicker before they do. Physical deterioration is something I feel every day, not that I’m hung up on it, but I’m very aware of changes in my body now.

You can say that maybe, if they catch new growth early enough, you might buy a little more time. But each time that happens, there’s less and less of you that wants to survive. Life quality issue … as simple as that.

So a cancer patient may ask him or her self that very simple question and be justified in doing so.

To know or not to know … that is the question.

Wasn’t that a famous quote?

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.