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Tides – Wednesday, October 21, 2009:

October 21st, 2009 2 comments

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

sm-10-21-09-Nahant-beach

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.

sm-10-21-09-Nahant-Tides

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!


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Monday, October 19, 2009

October 19th, 2009 No comments

What a day! I packed up this morning and left for Nahant about 11:30 am. The drive was unexpected beautiful. The weather forecast was for rain and snow … but it was sunny and wonderfully 60+ degrees. Nahant was a bit breezy as is most of the Boston area considering it’s all on the coast.

Another fine surprise was I spoke with Ollie today, he called while I was driving and that really made the trip go quickly … that was great. I enjoyed our weekly conversations :.

I showed up for treatments (double doses) around 4pm. And they took me almost immediately, didn’t even have the time to check out the news on my iphone. Wam-bam, I was out of there in a 25 mins. and on my way to the house. Traffic was heavy at that time (rush hour) heading north, but I was in the house and had the car unpacked by 5:30 – 6pm.

Then I decided I was hungry, I hadn’t eaten all day and decided to hit the local sea shack on the island for some Caesar salad and fried calamari. Perfect end to the day!

I also want to mention that this past weekend Harry M. stopped by the house on Sunday and got my work laptop working just perfectly … and that’s good news. I’ve been bringing two laptops with me each trip and not that I really mind, but it’s a pan in the butt to have to bring two … just simply more stuff to carry and I have enough to bring along for the week. So that will make the rest of the trips that much easier … thanks Harry, it works perfectly.

So everything appears to be calm, the sever that blew the hard drive last weekend is running well, I have a full supply of goods here on Nahant, and plenty of work to do while I’m not at MGH … what more could one ask for? Good food, lot’s of work and hopefully moving towards a healthier body. My goodness, sometimes life is just amazing :.

No … I’m not stoned, just glad to see things are finally settling down a bit and all this stuff in Beantown is becoming routine and handle-able. Actually, before I left Vermont today I managed to get the storms windows put up for winter. Well, almost finished it, Sher completed the job after I left by securing the screen doors with wind blocking materials.

Tomorrow at 7am I head off for another super dose of Intensity-Modulated Radiation Therapy (yep, that’s the one that make you glow I the dark), and the hopefully settle in for a good days work.

I do have an appointment later this week in Danvers, MA. (about ½ hr from Nahant), with a company called VaultLogix. They provide data backup systems online and offline, we’re going to talk about what we may be able to do for each other business wise.

I have so many more things I want to write about … but not enough time at the moment … maybe that’ll change too some day. One of those things is to write about, is this little community called Nahant. This really is a beautiful place on the Atlantic coast just north of Boston.

So it’ll be a busy week! … I like that, helps keep my spirits high.


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On The Outside, Looking In – Saturday, October 17, 2009

October 17th, 2009 No comments

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.

positive-bugs


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Fall Down Seven Times, Get Up Eight – Wednesday, October 14, 2009

October 14th, 2009 No comments

Seems like yesterdays posting about “positive thinking” struck a chord with quite a few readers … that’s good, because it was meant to.  It’s a crazy thing to wrestle with but it’s also crazy to walk into these cancer centers everyday and deal with the reality of it. Everybody looks so messed up … until you realize that you’re just as messed up as they are.  That’s when the heavies can start to sink in and if I let my mind wander too much, it’s gets too dangerous in there to deal with.  So I look for outside things to influence my thinking … like this,

I saw an elderly oriental woman today, and as we walked in the street leading towards the hospital, just out of the blue she said to me, in her Japanese or Chinese accent, ” Cancer, … fall down seven times, get up eight”. I smiled at her (with a genuine heart felt smile) and she smiled back at me as if to say “yes, I understand”, and I thought to myself … Wow, now that’s the way we should be dealing with the “positive thought” thing. We separated at the entrance door and she was gone. Well that really got my mind working and awake for the day.

Today, like everyday, I went in for treatment and about half way through, the wireless link between the operator (in another room), and the machine I was being treated under, lost it’s connection! Yikes, the PC that runs the program controlling the coordinates and dose, crashed in the middle of delivering huge amounts of modulated radiation to my back-side! I was the first patient of the morning too! We had to stop, make adjustments and start over … so I have to assume that I got double fried today. Kinda like re-fried beans. I hope the rest of the day went better for those folks at MGH … they weren’t happy about that.

But hey, this is really highly technical equipment and I expect stuff like that to happen … it’s just weird when it’s “you” under the lenses : Of course that made me late to leave the hospital, and get the rest of my day started too. And you thought only “Windows” computers crash … that’s just not so.

After the “double frying” I wasn’t feeling quite right (duh …) and had to hang out for a bit in the lobby before hopping in my car and taking off for Nahant. I couldn’t seem to snap out of the “feeling drained” thing, long enough to drive. I walked back upstairs and grabbed a coffee and waited … but to be honest, it never took effect. I drove back hoping all the way, that the coffee would kick in and give me a boost … but it just didn’t happen that way.

I got back and rested a few minutes, and started to work on a few websites I’m building for Upper Valley Services in Vermont. Slowly my energy started to return, but by 3pm. I needed a short nap and managed to take one.

That’s something else that’s interesting … you know, I realized that I have been accomplishing quite a bit of, not only work, but all the other things that happen I life too …. and all of it, by computer, and from a distance. People are getting accustomed to tele-commuting, but I’m almost tele-living. For instance, I recently set up Quickbooks Online for our business.  It’s pretty amazing, that I can be in Boston, making out invoices for customers all around the country, and sending the print job to Sher in Vermont, where it prints out on her printer, and she can send them out in the mail. That’s pretty cool if you think about it. All our personal communication has also been over the pc or iphone. What an amazing world this is becoming.

I wouldn’t want to live like this forever, but I find it amazing that we can do it, and do it reasonably well. It would really, really,  really suck if I had to stop everything for three months while getting treated.

It was nice here in Boston today, breezy, cool, sunny and not too much traffic. After treatment, I searched for a food market to buy some rations and supplies. Luckily, my GPS was full of choices and brought me to a few nice food shops. That’s one nice thing about living in a multi-cultural area like Boston … you have choices and in my book, choices are always a welcome thing.

BTW … thanks for the emails about yesterdays post, whether you agreed or not … it’s always nice to hear and know that my inner thoughts generate a little something for us all to think about … thank you.

Remember, … fall down seven times,  get up eight. It’s a good way to look at life no matter what stage your in … or on,  for that matter.


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Round 2, Boston – Tuesday, October 13, 2009:

October 13th, 2009 No comments

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!


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