Chondrosarcoma – ah shit, bob's sick

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

Another wonderful day here in Boston/Nahant, I just can’t believe the weather. It was so nice today that after treatments I went to view the rock lined beaches here … just gorgeous views. Here’s a pic I took this morning at about 9:30am

Here’s another picture of the little seafood shack I eat lunch at sometimes, not fancy, not cheap either … but darn good and fresh fish! Tides, sits right on the shore.

The increased IMRT doses of therapy I’m receiving this week is making me incredibly sleepy. I have never wanted and needed to sleep so much in my life … no kidding. My afternoon naps (yes, for most of life I’ve taken a quick catnap in the afternoons), which have always been  at most an hour, are now 3-4+ hours, and I still wake up exhausted. What a strange thing, to need so much sleep.

I don’t seem to really get going until 3-4pm. these days, so I’ve been working mostly at night, which is OK really … just different.

Tomorrow I meet with Doc Delaney as we do every Thursday after treatment for a discussion on how things are going. I suspect the report will be OK … I hope so. Besides being sleepy, I think everything else is going well. I mean, I don’t feel any worse and I don’t seem to be getting worse, so I have to assume that’s a good thing. After-all, that’s the entire idea of these special treatments … not to get worse. I don’t expect to get better, just not worse. So in that sense, I think I’m doing fine at the moment.

One of the things I observed in the cancer center today was, that after I got treated and came out, there were a lot of other patients waiting for whatever treatments they’re receiving, but as a I walked by them,  I could feel their eyes on me for some reason. So strongly that I looked down at my shoes to see if I had toilet paper or something stuck to them :, or that I had my shirt on backwards, or something crazy. But I found nothing … so I kept on moving. No one smiled, no one spoke, no eye contact … weird, just weird.

The parking attendant seemed happy and normal … so I have to assume it was all them and not me. Maybe I was too happy looking or something, I don’t know … just an observation.

It kind of made me a bit paranoid, because everyone of us in there, is in the same boat sort of speak and I couldn’t find anything wrong … so why look at me? Maybe there was a ghost following me! … whoa! Halloween is coming! … watch out.  It may be time to bring that glow stick under my shirt into therapy!

Once again, we prepare for the 3^rd week of IMRT Treatments at MGH. I expect this to be an exciting week. Radiation doses will increase, and so unfortunately, the need for more sleep will increase. It’ll be nicer when these treatments are over because they tell me that the effects from direct proton therapy is much lesser …. I hope so.

It’s depressing losing time to sleep … I know that may sound ridiculous but it true. It’s like a double whammy. First you have to drive to the hospital, then wait in the waiting room for a bit, spend a ½ hr in the micro-wave, rest a few mins before driving, then drive back, and then you have to lay down for (what I’ll call) a re-grouping nap. You just have to sleep, your whole shuts down about an hour after treatment due to lower oxygen levels in your blood. After that nap … then you’re approaching being OK for the day. But you usually have to eat (usually a piece of bread or something really light) by the time you wake up … now it’s close to noon time and your day is just beginning.

I’m not used to that! That’s pulling about 6 hrs a day out of your time … and then you have to do everything else you have to do, to survive … it’s not an easy schedule to maintain. This week will be the first full week of treatments, the past 2 weeks have only been 4 days long because of Columbus Day and I started a day late (on Tuesday) on the first week.

It’s easy for the nurses and doctors to say “oh yeah, don’t worry about sleeping so much, it’s good for you, you need it”. Well that’s all fine and dandy, but how the heck are you supposed to live. The docs and nurses actually look down at working while you’re being treated … as if you shouldn’t be. The thing is, they aren’t offering to pay your bills and expenses either! Yeah, combine all that and you end up working until 10-11 at night, every night, and that’s just to keep on an even keel.

The expense of maintaining two lives, in two places, is twofold. While your expenses are increasing, your income is dropping … not easy to deal with. And then of course, there’s always the folks who say “well take it easy”. Wow! … how?

I said before in this blog that I consider myself really lucky, and this is another example of it. At least I can work, I have the work and I don’t have to show up physically at an office to do it. Can you imagine if I couldn’t work remotely? How would my bills get paid? How could I afford my drugs? How could I afford dinner? Who’d be paying my electric bill, heat, water… well do you remember those folks that are depressed and not positively thinking in the cancer center … that’s the position many of them are in. They lost, not only their fight with cancer, but their drive, their income and many their family and friends. So yes, I consider myself very lucky in this sense … very lucky.

A diagnosis like I had gotten, can bring not only you, but your entire family to a crippling position financially. And then just think … the bills haven’t even started to come in the mail yet. I honestly don’t know how other people and families make it without becoming severely depressed.

I suspect, that after treatments, considering they are as successful as they can be, that I’m still going to be able to work and function reasonably well. I may well never regain all that I had … but I expect to be able to earn an income and live awhile longer. Now at some point, yes I’ll have to stop, but hopefully, I’ll have some more time to prepare for that.

Luckily, I actually have more work then ever. My job is going forward and my business is growing and continuing on reasonably strong. Getting and staying organized is the key here … getting as much done, as quickly as possible, and still leaving enough time to acquire enough rest to go on.

Quick Notes:

The weather for tomorrow doesn’t look great for driving. Snow and rain mix is expected for the drive to Boston, and high wind and rising tides and flooding are expected on Nahant. So it doesn’t look like a fun drive.

On one of our servers we had to swap out a huge hard drive that was used primarily for backups. It gave me about 6 hrs of a hard time … but then we it going, and it’s been fine since. Yep … with a little help from our friends.

I’m in the process of moving some of our accounting functions over to Quickbooks Online … that’s another challenge. But it does allow for me to work on our business online, without having to bring all the stuff back and forth to Boston. It’s an organizational, time saving thing, and it seems to be working.

To all that emailed this week, I have read them and will respond when time allows … and oh yes, I finally added a statistics package to this website that I hope to be able to make public soon.

That’s it …. tomorrows post will be from Beantown!

Oh yeah, why the crow? …. I have no idea, I just kind of liked it!

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.

Notes:

Treatments went well. The weekly consultation with Doc Delaney was immediately afterwards and that went well also. He said he finally figured out a way to attack the entire tumor without effect parts of my colon and that over the next week there will be increases in the dose of radiation they are giving me. Oh boy! According to Doc, all is going well and maybe a bit better then he originally thought it might.

The problem has been in figuring out how to give the highest dosage without damaging other parts in the way. He stated “you can kill any tumor with enough radiation, but the idea is not to kill the patient too” … then he smiled. It’s nice to see him loosening up a little bit :. He said it was a fine balance in finding the right combination, but in my case, he believes he finally has … so that’s good news.

The things that makes it change from one patient to the next, is that everyone’s anatomy is slightly different. He said I was lucky in the sense that I have a good anatomy for this type of treatment, all the parts are where they are supposed to be … textbook material. Evidently, that’s not true in all cases. He mentioned that in another case,  the patients general anatomy was a mess and that it was extremely difficult to deal with. Sometimes they had to treat people on their sides or in really odd positions so that their stomachs and innards would move out of the way. In really heavy people, they just can’t do it successfully. How strange.

So I walked out of treatment today feeling pretty good for a change, positive, you might say. It was nice to hear from the Doc that things were going well and that all this may end of worth it in the end.

Besides that stuff … I feel reasonably well considering, I’m living away from home and have to basically move every 4 days back and forth between Vermont and Massachusetts. This requires a special set of patience skills on its own. It’s a real pain in the ass moving everything, every few days … sometimes it seems like by the time I get set up and running, its time to break it all down and leave again … yikes! … maybe that’s where all my time and energy is going.

At the same time, where would I be without it? … thank goodness, I have the means to do it in the first place. I really shouldn’t complain, these treatments are prolonging my life and after-all is said and done, it’s actually a small price to pay for such an extension. I mean you just can’t go out and buy more time … now can you?

On the business front, today was a different story. One of our servers in California had all kinds of trouble rebooting and I think one of the drives died. It was so windy here on the island that connectivity was difficult to maintain and I got the server up and running again, but will have to work on it again tomorrow once back in Vermont. Of course, while the server is in trouble, so are many of our clients … and that’s nothing to fool around with. We try to keep things running 24/7 for our businesses and provide service without interruption, but when something like a piece of hardware fails … well, then you just have to deal with it as quickly as possible and get it back online.

Oh, that’s another thing Doc asked me about … was I working?  I explained that I was working and that most of it (99.99% these days) was remote telecommuting. He seemed OK with that but mentioned that I shouldn’t push it … I said “yeah, like you right?” … well that got another smile out him :. You know we all have to work … what else would I be doing? … I can’t really walk around the streets all day, I just can’t physically do that and besides it’d cost a fortune in entertainment. I like to work, keeps my mind sharp and busy. I wish I was doing more live radio stuff … and I hope to be starting up again soon. At least a few light shows on Saturdays in VT.

Well, it’s getting late here in Nahant and I have an early day to start tomorrow. Up at 5, out at 6, treatments at 8, drive back to VT at 10, and hopefully taking an afternoon nap by 2pm in Vermont.

Hopefully the Cali server will run all night!