Chondrosarcoma – ah shit, bob's sick

Finally got some of that well needed yard work and winterizing done. One thing that was very helpful to find out, is that I never did a lot of the original “setting up for summer” stuff I usually do in the first place. I simply hadn’t realized it! You might think that’s strange or odd that I wouldn’t know what was out in my yard and grounds … but to be honest, I haven’t really looked since I’d been diagnosed, and haven’t had the time or energy to do anything about it anyway. So, today I decided to start and tackle what was out there and to my surprise it wasn’t quite as bad as I thought. Is that positive thing? J Sher of course, came out and lent a hand and although we didn’t finish, we did put a big dent in what needed doing.

Many folks have still been writing about the “positive thinking” issue and I have to tell you, that all this makes great reading and writing on everyones part. I thank YOU for that. It really is, an issue of concern, because someday it will probably effect each and every one of us in some way. There’s no escaping it.

I believe there are times when positive thinking is absolutely the way to go, and other times when the reality of the situation, can not be, and should not be, over-ridden by positive thought type thinking. Sometimes the situation calls for a clear look at the reality of the moment. There are indeed many, many cases that “positive thought”, no matter how much you try, just won’t help. I see them everyday. People are dying, and in pain, and our society is not helping them nearly enough. These people aren’t failures of the “positive thought” culture! They are victims of a disease, a cancer.

Many have lost everything, and have nearly no loved ones to care, or relations to help … and maybe they don’t want the help any longer, maybe their time is up and they’re simply waiting. Positive thought won’t help these cases … maybe it was once there, but the reality of the situation has taken over, and they’ve given up. That isn’t necessarily a bad thing … it’s a real thing.

They too, were once vibrant lives that have been slowly put out, as if by a candle snuffer, but the wick is still slightly smoldering … do you think you’d have much “positive thought” left? I don’t.

We are complex creatures, and these are complex issues we’re dealing with to say the least, I for one have found myself torn in my thinking. I noticed for example, that while writing, sometimes my thoughts come in, almost as a surrealistic view, as if I’m on the outside, looking in and observing, rather then living it.

I find that rather odd, and can’t quite say what that’s all about. Is that a part of “positive thinking”? … removing myself from the real situation, and there-fore, allowing myself to “think positive” so that I can write?

Observing as if it weren’t happening to me … is that hiding the fact? Hiding the fact that there’s a good chance in a short period of time, I may be right where the others are at. This is the reality, and frankly, it’s not very positive. I’m not necessarily negative about it, but not positive either … it is, what it is.

Again, and I repeat myself from a previous post, that success in cancer treatment has really nothing to do with positive thought. It has to do with positive action, catching it in time, early diagnosis, quick action on your doctor’s part. I think positive thought plays a role in what’s left after your bout with cancer, and in re-building yourself … but not in success of treatment.

First you have to survive, then, use positive thought to rebuild yourself … that I understand. Clearly. Rehab houses should use positive thought

I’m not saying that you should run down the streets of Boston dramatically screaming “I’m dying, I’m dying” … noooooo, no, but you should have a clear view of the fact, that you probably are dying, or that you might die, and if you’re not, this is probably going to be the culprit that will take you out in the end. And that, that end, is much closer then you ever imagined it was. It’s coming at you, and you can’t stop it.

When a doctor tells you that you have “x” amount of time to live, whether that’s a few weeks, or years, he telling you that, so you can begin to prepare and tidy up the messy stuff in life. He’s telling you what’s happening, what’s happening according to the knowledge he has at the time. Doctors don’t enjoy that, and they don’t tell you to think positive, they tell you to get ready.

Had my doctor fooled around with being gentle and told me with postitive thought in mind, I may have ignored the situation longer and my cancer would have advanced even further then it did. There was no time to fool around my friends, no time to play … it was time for action!

I’m not saying this is true in every case, but it certainly is, in cases like mine.

You know, if you sit in the cancer center, and look around, you can see who has a life threatning cancer, and who is there for, say something light, like a prostrate cancer treatment. Look in their eyes and you’ll know, talk to one them for 5 minutes and you’ll know who is, and who isn’t, literally, slowly dying. Don’t think for a moment that it’s all depressing and all that, …. it’s not, but it is, what it is and we can’t change that without more science and understanding.

Personally, the only time I find it unbearably depressing is when it’s a young child fighting to survive, for a life he or she hasn’t really lived yet. That’s depressing and sad to me … not the rest of it.

I don’t know, and I’m not sure, that any of this actually matters. I think what I think, and write what I write, and try to capture those first thoughts or actions as best I can, and as fast as I can, for the sake of unfiltered writing. After all, this is all real life, and positive or not, catastrophic failure is a real possibility, and preparing for that, somehow seems more important then thinking positive, at times.

Positive thinking, may allow me to mentally remove myself from the situation, and allow me to observe what’s going on, as if it weren’t happening to me … but at night, when the lights go out, it’s just me, I can already hold hands with the cancer, become friends with the enemy, and be at peace within myself, when and if necessary.

Note:

Positive Thought is not a bad thing by any means, it has a time and place to be, but where and when, I simply haven’t experienced yet.

Yet another busy day. I started at 5am, made my little boy breakfast and drove him to school in Grafton, VT about a half hour away. I returned home, checked my email and started to pack for another week in Boston, loaded up the computers, cell phones, and everything else I could need and hit the road by 11am.!

I got to Boston slightly early for my treatment, so I stopped for a soda and to stretch my legs a bit from driving. I headed to MGH at 3:45pm for a one hour treatment, but ended up being there until almost 6pm! They were soooo busy, my guess is they had to fit two days worth of work into one.

But now I’m back at Nahant and relaxing in preparation for tomorrows treatments at 8am., I definitely like the morning appointments better, I’m out of there quickly and can get back to work within about hour and a half … so usually, I’m working by 9:30am in the morning, and that’s OK :.  I suspect tomorrow will be like that.

Tonight’s Random Thought:
I have noticed, and I’d expect no less really, that the Cancer Center keeps a pretty positive attitude directed towards it’s patients. But I don’t think, all patients appreciate that and probably rightfully so. Sometimes a positive attitude and or outlook, can be harmful in a way that your average person or I should say ‘a person without cancer’ may not understand. Personally, I don’t mind the positive outlook thing, and if I worked at the Cancer Center day in and day out … I think I’d want that positive attitude around me or I’d go nuts … but there is a down side to it too, and it’s difficult and complex to explain.

You know, this is really something that could take a lot of writing to get into, and we probably should, go into detail about it sometime. But as a general starting thought, I have to consider how the patient might feel, and I can do that from a first hand perspective now.

I saw someone today wearing a shirt that said “Cancer Survivor” (outside in the street), I assume meaning their treatment, whatever it was, was reasonably successful and may be holding the cancer at bay for the time being. Nice right?  They made it ….but, how does that make another patient feel? … like a loser? You might ask … was my loved one a loser, because he or she didn’t make it? Surviving isn’t a choice. You can do everything right, everything the doctors told you to do, even stop smoking cigarettes, and still lose the battle.  Most do in the end.  Modern science and medicine unfortunately, just aren’t that good yet.

I’m not kidding here, it’s a tough thing (cancer) to face, and even tougher knowing that your chances of surviving are slim, and that each day that goes by, those chances are often getting slimmer and slimmer… but those that are around you, that are cheering you on, and I should add, that they are without a doubt, well meaning people. Possibly even loved ones, family, friends, whatever … are at the same time, unknowingly, applying unbelievable amounts of pressure to someone who is already suffering from something so horrible, that the average mind can’t even properly conceive it.

This is tough thinking, … painful, ruthless and heartbreaking, but that’s what cancer is. It’s a tough little bugger that digs in with it’s teeth and just won’t let go. Surviving is simply not in your control, or your doctors control.

Cancer Sucks, period.  

I mean, I ask myself heavy questions (especially while driving in the car alone, going for treatments), all the time.

“are they doing all these treatments just to appease me?”
“am I going through all these treatments just for others?”
“am I ever going to return to where I was at?”
” how long do I have to live with this crap?”
” I wonder how much morphine they give you towards the end?”
“will I be a survivor?”.

Of course I get no answers and that’s primarily because there aren’t any answers. Just like there isn’t anyway that positive thought will straighten out the DNA that’s gone awry in your body.

So what do we do? So what can we do?

Like I said early, me personally, I like the ‘positive thought attitude’, not only for me, but I think it’s important for those standing around you, with you, helping you. It gives them something to hold on too. And that’s a fine gift to give them for all the help, support and love they’re giving you. I always try and keep a positive attitude towards everything and I always have. So nothing really new here for me.

But I also believe that, that’s not the case for all cancer peoples. Some are angry, disappointed, depressed, saddened, worried, cheated, and most of all, they all know (those with serious cancers), that they’re dying and that all the positive thought in the world isn’t going to help them.

It’s just a random thought I had today, inspired by an innocent person wearing a t-shirt. I was eating a donut outside of a little shop when they walked by.It doesn’t mean anything, and I’m not even sure if I explained my thoughts accurately, but what the hell, I had to write what was on my mind and I feel better for doing it, and maybe, just maybe, we’ll all understand a little better, and a little more, of the effects that cancer not only has on your body, but also your mind and soul.

Hey! … in a few hours I’m off to see the wizard at MGH!

It’s off to Beantown tomorrow morning for round two of treatments. But this time, I’m ready for it! Especially, the working side of life. Beleive it or not, I had Columbus Day off from treatments!

Lydia R. whom I wrote about a few weeks ago, has been gracious enough to arrange for me to have lunches and dinners at some of my favorite restaurants and bistro’s in Boston … now, who could refuse that?

Here are some of those places, that I enjoy eating. If you’re a person like me, that truly enjoys dining out and trying new foods that are exciting and fresh, I would highly recommend any these great places. I’m even hoping my buddy Ray will join me at one of these fabulous places (his choice) sometime next month! Check out their menus!

Evoo – Cambridge

Addis Red Sea 

L’Espalier

Craigie On Main

Oleana’s

Now, my appetite has not been the greatest, but I still enjoy a good meal from time to time, I just simply eat small portions, eat slowly, and enjoy. These days, it’s one good meal a day (sometimes lunch, sometimes dinner) and the rest of the day I kind of just “pick” on things. This seems to suit me just fine. This past month, I have lost some weight, but nothing to be concerned about. I consider it only natural to lose weight when you’re not well and I don’t think this situation calls for anything different.

In general this weekend was pretty productive considering it was the first week of transitioning from Boston to Vermont. I really hoping to get this moving around every 4 days to be a smooth experience. I managed to get a lot of work done, visit with Sher and Alberic, and get some reasonable rest too … and that’s a lot to do in weekend!

I’m back up against that persistent problem of having too many things I want to write about at the same time. One of those things is that I’d like to start cooking some fine meals for myself and my host at Nahant this week … at least that’s part of my plan. Hopefully, I’ll be starting that up this coming Wednesday if time allows and I can find the “right” places to shop in around the island. The key to great meals, are great ingredients.

This past weekend, Alberic’s school held an Apple Bake sale to help raise funds for his class trip. He had a great time and we sold our pie just minutes after we arrived. Al also took the job of photographer and took many pictures of the event. We had a lot of fun.

Wow this whole post is going to be about food! So I might as well continue by telling you that soup is something that I have been enjoying like never before. Maybe it’s the cooler weather, maybe it’s the easy digestion, whatever it is, they have become a constant in my diet lately. A natural craving you might say, and they’re good for you too. Nothing like a hot bowl of soup with fresh baked bread … yum, I could eat some now!

Ok, I have to get off to sleep shortly for two reasons. One is that all this talk about food is making me hungry, and the other is that I have to prepare to drive tomorrow. But before I can do that … I have to drop off Alberic at school, go back and finish packing, drive to Boston, receive a treatment at 4pm, and drive off to Nahant. So I have a full day ahead me and need to acquire the right amount of sleep … well at least 4-6 hours anyhow.

Ray, start checking out those menus J .

Howard, thanks for the info on medical imaging, I will ask this week about getting some to play with.

Rose, thank you again for that lovely email and I will return one, once I’m back in Boston.

Harry, I’ll call you sometime tomorrow … have a great week at work!

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.