Chondrosarcoma – ah shit, bob's sick

Today as I was sitting in the waiting room, Alan Sherman’s song, ”Hello Muddah, Hello Fadduh” just fell out of the sky. Do you remember that song? … about camp Granada.

I adjusted a few words and it felt just right for today’s post!

Hello Sherri, Hello Alby,

Here I am at, proton therapy.

Oh my, at times it’s been simple draining,

But what’s the use in doing any complaining.

Traffic’s awful, never flowing,

Drivers tempers, are always showing.

Ambulances, fire trucks are always screaming,

Will I ever wake up from this nightmare’s dreaming?

I get to treatments, so close to eight,

Hurry up now, sit and wait.

Then the world around you starts a buzzin’

Can’t I borrow DNA, from a long lost cousin?

Bring me home, oh Sherri, Alby,

Bring me home, I hate these treatments.

Don’t leave me alone in the waiting room where,

All of the other people just might stare!.

Treatments are over, now I’m going,

So much better, the traffics flowing,

Out to the island, where I’ll be travelin’

Oh this morphine simply has my mind unravelin’

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!

We all owe a lot to native New Yorker Ray Tomlinson and I bet 99.9% of you don’t even know who in the world he is, and what he’s done for you. Ray has changed our lives in a big way, and for me, he’s even done more then that. Without him I probably wouldn’t be getting these treatments and might well be on my way to succumbing to this cancer.

Yep, I can that Ray Tomlinson sort of helped save or extend my life … and I know he’s done a lot for all of you. Whether it’s had to do with your work, friends, family … we all take for granted what Ray did …. and he let it go without a patent, and I don’t think he’s really made a dime off it it.

So what did Ray Tomlinson do for us? … Ray is the inventor of email!

You can read more about Ray here on Wiki

For me, that was one of the great things that helped start the internet rage and in a big way! I find it most fascinating, that we have the ability to send communication email almost instantly to anywhere on the globe. It really has changed the way the world works. It never goes to the wrong address unless YOU made a mistake and I don’t think life would the same without it any longer.

First off, for work and business, it’s totally awesome. Fast messages can flick back and forth without directly interrupting what you’re doing at the moment. Yes, the telephone is still necessary, just like a fax and so many other things, but email definitely has a strong place in business world.

The other side of email, the side I’m most interested in, is the personal communication that comes with an email. By this I mean, with friends, family and all kinds of people you may never have had contact with … or the ability to keep in touch with people that otherwise would have been lost to circumstances that often change our lives.

For example, I have lot’s of friends that have moved away to different areas of the country, but staying in touch with them, even if it’s just once in a while, has become so easy and simple. Another example is writing to folks in (as Shrek might say) far, far away places. I mean, I’ve been emailing folks (both personal and business) in the U.K., Sweden, and all over the globe … fascinating, … really, really, fascinating.

Think about it … it wasn’t long ago that you just couldn’t do that. Email has allowed me to get into writing more then I ever would’ve, and more then I ever have before.

I was one of those kids in school that loved the idea of pen pals around the world, the only downside was waiting for replies …. what a pin in the butt! I don’t have to have an instant answer … but gee, I don’t want to wait for 4 weeks either.

Another thing email has been great for, is the current crisis that I’m in. How wonderful it is to hear from folks in a timely manner. I can read them when time allows, I can reply at a time that’s convenient for me. What more could you ask for?

Bill N. from Florida who told me all about the possibilities of Proton Therapy, got to me via email. I contacted Doc Delaney through email, I’m staying on Nahant because of email, I’m keeping job because of email. See what I mean, I can actually say that email helped in the continuation of my life and financial status. Sometimes I even post to this blog via email!

So really, next time you send an email to a friend, grandchild, business associate or anyone, don’t forget to thank Ray Tomlinson for his contribution.

Now if we could just get our government to tackle the spam issue … it would be really great!

Tomorrow, I’m back off to Boston and Nahant. I’ll be finding out the exact starting dates for Proton Therapy!

No Post This Past Friday:

Friday night, between treatments, getting through the extra traffic caused by President Obamas speaking at M.I.T., driving back to VT, Alberic being here, and the increased dosage of treatments, I was just plain too exhausted to write. As a matter of fact, I didn’t even check my mail until Saturday morning.

Fridays are a particularly tough day, and this Friday there was no school, which makes it even tougher in the sense that time gets spread thin over the course of the day.

Had a great dinner at Craigie’s On Main, last Thursday night in which I’ll write a post about, but on another night. It definitely deserves it’s own post because it was truly a spectacular meal. Not only that, but the service was something unparalleled in any other establishment I’ve ever eaten in … and the mixologist (bartender) was simply beyond belief.

But let’s start here for today:

Broccoli Report:

This evening’s broccoli selection was Cold, Blanched, Lightly Salted Broccoli with Ranch Dip! Although there was little interest in the Ranch dip … several cold broccoli went down the hatch!

Also on the home front, it was our cats birthday this evening! The two Russian Blue’s got a new scratching post, and some crunchy treats. Of course they did not attend the party themselves … but they did go for the scratching post quick enough J .

Friday’s treatments were just plain draining, it’s really odd the way total exhaustion can take over your body an hour or so after being zapped, micro-waved or whatever you want to call it. I can go from full to empty (on the energy scale), in a range of about 5 minutes. Coffee, tea, or just about nothing else I’ve found, just can’t control it … I simply have to sleep and rest it off, after that, I’m fine. This is OK …. with the exception of Friday’s and simply because I want to drive back to Vermont early in the day so I can spend the weekend with Sher and Alberic, and get some things done around the house … a little at a time.

They often draw (with some kind of marker), on your back, which makes me feel like one of those old-time butcher charts where they mark out the cuts of pork or something J . Actually, I found this doctors chart on the floor of treatment room as I was leaving this past Friday. I’ll have to talk to them about this … because now, maybe I understand why the other patients keep looking at me with blank stares as I walk by when leaving.

 All kidding aside, treatments went well Friday. I did ask the team about getting some actual scans for the blog, and they said definitely, but I had to ask Doc for them. Not sure why that is, but I don’t believe that will a problem. Maybe they just can’t give them out without his permission.

Once again it’s rained while back in Vermont, so getting the rest of the outside work completed and ready for winter get delayed again. Although I did get a decent amount done last weekend, and during the week some was completed for me ( and I thank the person that did that), I feel like at least I have a handle on it … and that’s a nice feeling. Here in Vermont, snow could come at anytime, and being prepared is key to survival in the north country.

Over-all, I’ve been feeling reasonably well, I suspect that the proton treatments will start this week (possibly even this Monday), although there will be a day or two of preparation (mold making) before they can actually start the treatments. I will say, that through the discussions with Doc, that some damage has definitely been done and that all the pre-proton IMRT treatments have been successful. So, so far, so good. He appears very satisfied with where we are now.

Doc’s got a solid plan and it seems to be working accordingly … and that’s good enough for me to be comfortable with what’s going on. I mean, who knows what the future holds, and I’m not really sure I want to know … but, at this time, it appears that if I take it easy on the physical stuff, keep a reasonable dose of whatever in me to keep the back pain in check, I should be able to continue on in reasonable fashion. At least working and being self sufficient wise.

Doc continuously reminds me, that I should always keep in mind, things are not going to change much, and that the goal of the treatment is strictly to keep things from getting any worse. Of course, once these treatments are finished, a return of more of this type cancer (or any type for that matter) will cause tremendous complications and problems. I can not receive this type of treatment ever again, and the other options available to me will be extremely limited … so really, the best bet is just to hope that nothing else appears.

This past week, work wise, was excellent. No problems from computers (thanks to Harry M.) and both cell phones and ebery other device I have seemed to work flawlessly. So, even though I didn’t begin my work day till later, I still accomplished a lot of work … and that is a wonderful feeling.

What’s coming up? … well, I have several writings in mind for the near future. One is about the other patients that seem to just stare as I walk by. I think during this coming week, I stop and try to talk to one of them and see if I can get a feel for what’s up with that.

Another thing I’d like to write about is how the role of email is helping me survive this crisis. I know, what the hell you say … email? Come on Bob, you can do better then that. But it’s true, the luxury that email provides us with is really and truly amazing. It’s not like the old days when you had pen pals in school, and you don’t have to wait for weeks for replies either. I can send an email half way around the globe and get a reply in a matter of minutes. It’s so easy to keep in touch, and make new friends, via email. It really and truly is a luxury that I wouldn’t want to live without any longer.

Wasn’t it Mae West that once said “Is That A Pistol You’re Carrying? Or Are You Just Happy To See Me?” … I hope so, because that’s what I named a series of, not yet quite finished, articles on sex and cancer. You know, your sex life changes, not that it’s better or worse … but that it simply changes, and I found it interesting that very little data seemed to be on the internet about it. Maybe it’s just me and my case too … I don’t know, both certainly worth writing about.

One more thing to write about is a series of restaurants that I’ve either, eaten in or am about to eat in. I love writing about food because that’s something we all have in common … we all have to eat, and one might as well enjoy the experience. Whether it’s something you’re making at home, food from a cart on a street corner or from a high-end restaurant, food is a pleasure to enjoy.

Well that’s it for tonight …

Treatments went off without a hitch today … well sort of, let me explain. The parking attendant was really busy, and he works alone. Cars were piled up three deep waiting to get parked by the valet service, Ambulances were trying to pull into, delivery trucks were trying to deliver and it was a real mess outside, plus there were huge cranes working on the other side of the street … so it was extra crazy. I just left my car in the street, with  the keys in it and running, made eye contact with the attendant and walked in the hospital. Off to a fun start right?

But inside all was calm inside thankfully and I checked myself in with the barcoded card I have that tells the “team” (everyone has a radiology team that you work with), that I had arrived. I wasn’t in a seat 2 mins when they came and asked if I could/would see Doc Delaney before treatment instead of afterwards like every Thursday.  Of course I jumped on the opportunity thinking I’d get out early if I did.

As usual Doc was prompt and on the ball, I must have been his first patient of the morning because before he entered the room the nurses and IT guys were trying to get his pc running. Evidently, he gets upset when it isn’t. They seemed nervous and the nurses wouldn’t let the IT guys go until they were sure it was running. He did carry in a huge (even I was impressed) , three ring binder with my name on it, with every paper and test of me, along with notes on my case in it and the future plan. He popped it down on the table and smiled, asked how I was feeling.

I told him there was basically no change, no better, no worse. He was thrilled to hear this … “great, that’s totally great, that’s exactly what we’re looking for”. He went to explain that no change was a good thing because that means its not getting worse and that, that was the intent of the treatments. I explained that I clearly understood that, and was expecting no real change in my condition, and that if he could get me out of MGH and the Proton Center in exactly the shape I’m in now … I’d be a “happy camper”.

He asked me to walk in a straight line (which isn’t always so easy for me) down the hall and back, he watched closely and I could feel myself weave a bit now and then. He asked about that and I clearly stated that I walked like that when I walked into MHG and nothing really changed (again). Total control over my left foot and leg is no longer possible and I don’t believe it ever will be … and that’s ok. If that, and walking distances, are the only things that get permanently affected by this … I walk out a winner!
He agreed.

He said thing were actually going very well and that he may move up the start date for starting proton … so that may happen on Monday …  we’ll see.

He also explained, that if I ever have x rays done, say from a car accident or something like that, that the x-rays are going to show a tumor, and that may panic other doctors and to make sure I (or someone) tell them that. Basically, what he’s saying is that this tumor I have is made of cartilage and is always going to be there … hance, that’s the discomfort in my back, walking and the need for (at least now) a constant supply of pain killers. I have extra bone cartilage on my spine and it’s not going away. Again I assured him I understood exactly what was going down.

He said the Proton Center will track me for the rest of my life, and ask me to return for scans and exams. First after a few months, then at 6 month intervals to be sure that the tumor isn’t growing. That’s the key here (according to Doc), closely examining the scans they’ll take when treatment ends, and comparing them, with scans I’ll get in the future. They keep a close eye on those, and that’s something he’ll do himself (personally) to keep a constant eye on the situation. At least that’s the plan at the moment.

He also said that my bottom three spine bones, hips, and sacrum will all be very brittle,e and to be extra careful in any real physical activity. A small price to pay if all this works as expected in the end.

That’s the docs report.

Then I went in for treatment and they seemed to be having trouble getting the machine running again, pc problems :. I waited about 15 mins and they were ready for me.

Each day they put in a different CD that contains instructions (according to Docs program), of how much and what parts they are going to blast. You lie down on a table with a piece that holds your feet, and another that holds your head, they turn and twist you into position by moving the blanket you’re lying on. You must lay all your weight down and they kind of roll you back and forth until the tech team is satisfied … precise positioning is the key here, then you have to stay in that exact position for about twenty minutes, while the machine rotates in and out, and all around you, lining up it’s firing postistion. When you’re good to go … they start to blast away!

The team also thank me for wearing “sweat pants” everyday! They say it makes their job a 100 times easier … and it’s easier for me too … so thanks Sher, that was you’re idea!

Next week, when proton starts, this will all change, along with the times and equipment … but for now, this is how it is. Not bad since I should have dies in late August, early September.

Tonight, I’m having dinner with Chef/Owner Tony Maws at Craigie On Main in Cambridge, thanks to my friend Lydia Ratcliff and a group of Vermont and New Hampshire farmers that raise special meats for all the great restaurants in Boston and New York.

If you’re ever in Boston, checkout Tony’s restaurant and I promise you won’t be disappointed. He is one of America’s top chefs and is always there to cook himself!

The website is worth looking at along with his exquisite menus.

Craigie On Main