This past trip to Boston was in one sense a tough one, and in another sense one of the better trips I’ve had. Driving was absolutely awful, mainly caused by the amount of snow still in the roadways. I was surprised to see so much snow still on the roads. Getting out to Chelsea/Harvard Imaging was truly a trip through narrow, snow bound roads, and impatient morning drivers.

The good news is, that after the tests, scans, needles and everything else, there appears to be no change in the cancer. This is good news. Nothing is happening. Good enough to declare that I don’t have to go again until September … that alone is awesome.

These tests were different then what I’ve had in the past, different chemistry and different scanning machines. At the time, the mix of concoctions put through my IV made me fell rather ill and I thought it would be a lousy trip home, and was planning on feeling poorly for a few days, but to my surprise, they seemed to dissipate quicker then whatever they used in the past and by the time I had spoken with Doc Delaney, I was already beginning to recover.

This made the trip home much easier. Although I was really tired from driving and the long day, I wasn’t feeling nearly as poor, as in the past.

To put this trip in short form … it wasn’t bad. They did take some photographs for documentation and as always lot’s of questions, and it is one of the few times I’ve seen Doc smile and seem satisfied with what’s going on. I couldn’t call this trip, and Doc’s work, any less then satisfying.

So while this Chondrosarcoma saga is far from over, I do feel that stabilization may be on the way. Yeah, I have my crappy days, but life is beginning to get “peppered” with a few good ones again now and then. And that my friend, feels awful good.

Now back to work!

Keeping up with things in life, not only requires a constant level of energy, but a high level of concentration and both of those items have become as valuable a commodity, as just about anything could be. Oh, what I wouldn’t do for more energy.

You know those five hour energy drinks? … little tiny bottles of nasty tasting stuff that’s supposed to give you a boost through the afternoon, or give you “jump start” in the mornings? I could drink a dozen of those things right after waking up from a twelve hour sleep and go right back to bed.

My average day is actually rather simple … I’ve desperately tried to redesign my life’s days to intentionally reflect simplicity because of this energy problem, but unfortunately, I haven’t found that right combination that provides the increased desire to sleep and rest more often, and still accomplish the things in life that I need to do, in order to survive both financially and mentally.

In fact, the other day I said to Sher, that I thought maybe, at one time, long, long, time ago, that people might have hibernated like some animals do during winter. For the first time, I can honestly relate to this mode of living. Really! I mean, if I could pack myself away for the winter months, I’d do it.

There are several things that just seem to ‘use up’, absorb or require lot’s of energy that I just can’t (or maybe not willing to) do without. I mean, like working. None of us can get by without working. How could you? Work not only has financial reward, which helps a lot, but also the sense of accomplishment that we all need. That’s something I’m not willing to lose or reduce.

Another thing is art (for a lack of a better word), I consider art to be a major part of a balanced life. This includes everything from keeping sharp on my guitar playing, to writing, to creating 3-D computer art, and everything in between. If you think about it, your art time, is often the only time you get to “work” for yourself, sort of speak. The Labors of Love.

Click Image For a Larger View

Yet another thing is children, children require lots of time and energy to grow. Ha! sounds like I’m talking about growing a plant or something … but it’s true. It’s a never ending thing. Often I blend several of these things together, in an effort to try and accomplish two things at once … like the old saying ‘killing two birds, with one stone’. Hence to the idea of teaching Al to play guitar. While getting it out of my system, it’s also teaching him. Last week I did it again with my computer. I showed him how a computer language can render a beautiful piece of art, simply by writing a file and sending it to a rendering engine to interpret it. We designed a Star Ship for fun.

For those that understand computer art, we used the POV-Ray engine (Persistence Of Vision, Point Of View), and a simple text file to create the ship below. While it’s not finished by any means, we do have a good start to it. For those interested you can read about the scientists that designed the render engine and language, why and what it’s all about, at POVRAY.org.

Anyway, between work, art, raising children there is also the whole family thing, and the ability to provide all the things it needs to thrive … that’s a whole other venture in itself that requires lot’s of energy. Maintaining a home, food, clothes, etc etc., all part of maintaining life.

Of course many of us, do this almost mindlessly. You might say, ‘Ah, come on Bob, everybody does that stuff everyday … and then some’ … and I’d have to agree with you. I always did, and still had time left to do more …. lot’s more.

But with the onslaught of cancer, I’ve had to make serious concessions as to which things were most important, and which I could let go off, and still feel like I was accomplishing what was needed to support and even grow my family. I have to assume that all cancer patients go through a similar situation, in fact, how could you not re-evaluate life’s purposes? I think it’d be a good thing to do now and then even without cancer. But your health forces that situation and all that goes along with it.

So how did I find time to write today? Well, tomorrow we’re off to see the wizard in Boston again. My last two visits have been thwarted by winters weather and it’s now time that I HAVE to go … no excuses.

You see, through-out all this time, the last year and half, I’ve never gotten a clear, solid answer on whether or not all this work that’s been done on me, has done any good. Now I can tell you, that the advancement of the cancer has certainly been hampered … even if the Doc can’t prove it in his tests yet, I can feel it in my body. What we don’t know and understand is that even though we’ve fought back with protons, chemicals and spirit (yes, I consider spirit one of the more powerful drugs), just how successful we’ve been. This is what we’re looking for now.

In layman’s terms … it’s minuscule traces of living, replicating cancer cells within the tumor, or anywhere for that matter. These cancer cells leave a trail of, traces of sugars, (if you were explaining this to a child you might say ‘it’s their poop’) as they move from place to another within the tumor, or if they decide to take up residence elsewhere in your system. These are the first stages to be seen if cancer is still active in your body.

In my case, it’s a little different though. Normally, this tumor would have been cut out, surgically removed, and then radiation treatment (and maybe chemo), around the surrounding area, would have assured (hopefully), that all the cells were killed. But because the nerve bundles, arteries and what-not that run down your spinal column became entwined in the tumor, conventional surgery would left me in tough shape.

However, with me the tumor was left in … and because of that, the risk of return could be higher … maybe. No one knows, and there is no historical data to go by. So we have to watch. The weird part is, that since the tumor still in me, there are millions of living cancer cells still floating around my system … what the proton therapy hopefully accomplished was that these cells are (hopefully) unable to replicate … and that is what they’re looking for.

Kind of simple, kind of complex …. but very difficult to judge or declare a success without a constant level of surveillance. It’s why I never get a ‘real’ answer.

I ran a gamble by prolonging these visits (which wasn’t entirely my fault), but now it’s time to see the wizard and check out what’s going on.

So, I took most the day off (worked a little this morning), and prepared (emptied out) my system, and mind, for tomorrows visit, and will leave about five in the morning to make the drive. This also allowed me time to write this post!

So while I won’t return with a definitive answer tomorrow, I will be able to re-sign my lease for another renewal of time, and adjust things accordingly.

Besides, I have a lot of personal things I want to finish or do yet: a list in no particular order.

The Faces of Cancer: (photo essay, not quite finished)

What’s Going on in Egypt and the Rest of the Middle East: (article)

How and Why to Grow Medical Marijuana: Best Medicines Made At Home. (almost finished pdf)

The Medical Garden: (almost finished), software for growing medical marijuana.

More Starships and Related Items: 3D renderings (with Alberic)

Why Ronald Regan Wasn’t a Great President: (article)

The Truth About Sex and Chondrosarcoma:

…. and the list goes on and on.

BTW … last week a friend (Harry M.)and I were having lunch in White River Junction, Vermont and in walked Governor Peter Schumlin, our new Governor of Vermont. At the time I was so surprised that I neglected to ask him about the advancement of Vermont’s Medical Marijuana laws and how impossible they are for most people to follow. Not in the sense of complication (they’re very simple and clear), but more about how the state is neglecting to supply more information about how folks that need to use it, can either purchase, grow or acquire it. Which is the reason behind my writing a PDF instructional pamphlet and matching software. Maybe next time … or maybe I’ll write him.

My goodness … so much to do, no time to be not feeling well … We’re Off To See The Wizard!

But here we are now, a year later, healed and in decent shape, considering all that went down last year, and hoping this year will be better than ever! It’s certainly starting off that way! We had a great holiday season and for the first time in my life not only did we have fun …. we also got the house cleaned up and most of the decorations put away! Now that’s a first for me … usually my holiday decorations remain in place until at least mid February … but not this year.

So in the spirit of keeping this short and sweet, I wish everyone a Happy New Year and let’s hope we all have a better year.

Peace, Love and Happiness to all.

The effects of proton treatments should just about be winding down. They said it take just about a year for it to do its thing … and it’s been about a year from the first treatment, and although the cancerous tumor remains on my lower spinal column, wrapped around the nerve bundles (which is what makes daily living uncomfortable), it feels different. I’d have to say that it appears to be either completely non-active or if it is active, it’s been severely hampered in it’s attempt to either re-grow or continue to grow.

This is a good thing.

My energy level is not as it once, and probably never will be, but I also seem to be having occasional days when it is pretty darn good. For over a year now I’ve literally struggled with simply staying awake for eight hours in a row, let alone expending any energy during that time, and now it seems I’ll get one or two days a week that I can go to work, work a full day and still have a little “life” left in me when I get home … and that is a really good thing!

Of course our sex life has taken a huge hit during this past year … but even that seems to be on the rise! (no pun intended).

So while things are not back to “normal”, and honestly I have to assume returning to past levels of energy is basically out of the question, I am beginning to feel like a reasonable degree of recovery is within reach, as long as the cancer doesn’t start moving around (metastasize) or return with a vengeance … and only time will tell us that. While I continue to have a few days a weeks that are “off”, I have a few that are “right on” too … and that is yet another good thing!

With winter approaching, I have concerns of keeping my energy levels high enough to get through the days of cold weather. For one, ever since this cancer took hold, I am almost always cold. No matter what. Even though the weather is only in the fifties and forties, I’m always feeling cold and I mean cold right through to the bone … freezing. Where I used to consider fifty degrees to be the perfect day … I now shiver like a leaf in the wind in fifty.

I mention this because keeping warm, is on one hand, an important thing, and on the other, can be a pain in the butt. Here’s why, … It’s takes a lot of energy just to keep your body warm, and burning all this energy to stay warm, takes away from the energy you have in reserve, for doing other things. Being cold all the time can be exhausting. On the other hand, when I’m warm and toasty … it makes me sleepy and all I want to do is curl up and sleep like a bear in hibernation. It’s a tough thing to find a balance for.

Towards the end of December, I have several appointments for scans and tests back in Boston. I’m hoping my observations are correctly reflected in their findings.

Funny thing too … the other day in an email, a reader of this site mentioned that I took both the most modern, and the most ancient methods for dealing with this illness, and now that I think about it … he was totally correct. The combination of Proton therapy for treatment, and the use of medical marijuana for recovery, seems to be the right combination for me.

I’m reasonably confident that given time, and providing there are no nearby reoccurrences, that I should easily be able to make the average survival rate, and probably do better.

By the way, I’ve had a of emails asking why I’m not writing on the blog as often as I once was. Well, the truth is, at this time I don’t have as much to write about. There are not as many changes happening and those that are, are certainly not as frequent as they once were. Now that’s not a good thing … it’s a great thing!

Peace to all.

So what did I do with all this time on my hands? Well, today’s weather was just the perfect Vermont summer day. There’s a wonderful breeze, about seventy-five to eighty degrees and just simply lovely. What a day to be alive! I decided I’d take a short walk through our woods and check things out.

I haven’t walked our property very much this past year and with no one around I could take my time, move at my own pace, and rest whenever I wanted to. Not that others rush me, but I always feel obliged to try and keep up with others and not slow the pace too much.
For those that walk through the woods now and then, you know the forest and streams are always changing. They grow and the stream change shape with new twists and turns. New trees and plants pop up, and you can usually see the tracks of deer and moose and others that pass through in search of food, water and refuge.

I love walking the forest and the peace of mind that comes from spending time there. I mean just think about the word forest … “for-rest” … need I say more? I always feel like I can think clearer after a walk, I’m more in touch with myself, my emotions, and it always increases creative thought. After walking through the woods I always want to spend the rest of my day writing, painting or playing music. For me, it’s the biggest “turn on” when it comes to creativity and keeping that edge sharp.

Today I took my camera and walked the trails I’ve cut and maintained over the years. The ponds and streams were full of fish, frogs and others, splashing as I walked by as if to say “come join us”. One section of the trail follows the stream a distance and it was simply incredible to see all the life in the water. That’s one of the great things about having ponds and stream to walk … everything in the forest comes for water, so it’s always lively. I crossed a deer run and saw those fresh little “rasinettes” as evidence that they’d recently traveled through on their way to drink.

I stopped to rest under a large old tree that’s been there long before I ever discovered this place. I sat on the ground resting my back against it’s trunk listening to the birds and other noises that always fill the forest up. It was so peaceful I almost fell asleep … well, not asleep, but more like a daydream.

All these thoughts were going through my mind about how much the forest changed since the last time I’d traveled through, and the cycle of nature always renewing itself. Dying and being reborn, how the leaves drop from the trees each year and others return to take their place, how the wild flowers drop their seeds for the next generation, and how everything is intertwined and dependant on each other for survival.

I also thought about how I (and all people in general), fit into this scheme of natures renewal and found myself in a deep state of peacefulness that I haven’t felt or been in touch with for a long time. You know, I stopped and “smelt the roses” you might say. A wonderful experience to say the least.

As I stood up to start making my way back to the house, I walked about five steps away from the tree and turned back around to looked at it. I took a photo of it, my intent had been to take many photos today, but somehow this was the only one I came home with. Below is the photo I took. Click on it and you’ll see a larger version.

I had forgotten that almost ten years ago Sher, I and Alberic had hung masks and some other objects on many of the trees throughout our property. Alby always considered them magic trees, maybe trees that the Ewoks (from Star Wars) lived in. Today, after ten years, these tree hangings paid off in a big way for me. I hope you enjoyed this tale as much as I enjoyed the experience. It made me realize … that I really never was alone after-all.

The first test was a complex MRI (one of my personal favorites) that involved setting up an IV with mix of several solutions for reading levels of activity in the tumor region of my spine. It’s a long test, about thirty-five to forty minutes and they do several passes. First pass is to get an accurate measurement of the tumor itself … like actually measuring with ruler, height, width, depth.

Then they inject you with a contrast so that blood movement (or non-movement) can be measured accurately. The next injection is to see the amount of oxygen that the tumor is (or is not)consuming, then one for the amount of blood sugars that the tumor may be consuming.
During all these scans … and I mean the entire time, you can’t move a muscle or the process basically has to start over. It’s important because when the Doc reads these scans they have to line up with older scans, and with each other. This is the reason they tattoo’d me in the beginning … so that alignment can always be reproduced. Any movement does two things. One is of course it makes it almost impossible to line up with other scans and secondly, the images blur when you move.

So if you want to get out of that tiny little tube … you’d best be still. It’s a tough one because it’s kind of like laying down in an empty toilet paper roll made out of metal! It’s tight (not for claustrophobics), very noisy, and there seems to be an inherent lack of air movement. Not a comfy situation. Oops, and can’t fall asleep either (although I’m not sure anyone actually could because of the noise). People tend to move in their sleep and again, that’s not a good thing in this situation.

My guess is that I spent about an hour and a half to two hours … not fun.
The next thing was to get a series of chest x-rays and a few other what seemed to be random bone and joint pictures. The purpose of these is to check and see if there has been any cancerous metastasis. Basically, they’re looking for cancer they may have spread or took up residence somewhere else in my body. The most common spots for this to occur is in the lungs, chest (especially the rib cage), and joints. In chondrosarcoma, the joints are important areas to keep an eye on.

By the time I was finished with that I was ready for some fresh air. We took a walk outside for a few minutes and looked at the new building MGH is almost finished with. When it’s finished it’ll house most of the equipment I’ve been talking about since the beginning of the blog with the exception of the actual proton machine which requires the better part of a building on it’s own.

We went back in to talk with Doc Delany and get the scoop on the results of the days testing. That’s one thing they have done really slick, by the time your scans and x-rays are done, the doctor has received, and examined them, and has had the time to study and compare results. MGH has a huge file on me by now (yeah, it’s impressive, four big, stuff to the gills three rings binders and a half of shelf of DVD’s of every scan they’ve ever done of me.

He came to see me almost immediately ,which was great because after a few hours of this stuff I was beginning to wear down. I don’t like getting poked and prodded to begin with (well who does ?), but afterwards I’m always ready to bolt out there. Honestly, had I not promised to see this through the entire process, with Doc Delaney, I probably would’ve left the building right then and there.

Doc had positive, and not so positive things to say. For one, the measurements of the tumor show that it hasn’t grown any … that’s a good thing. We don’t want to see growth. On the other hand, it hasn’t shrunk like tumors traditionally do. Now that’s partially because it’s bone cancer and shrinkage is limited, but a little bit would’ve been nice to see. The key to it shrinking a little is that with each tiny amount it might have shrunk, the possibility of returning function would have increased.

Now I can tell that leg movement, nerve and muscle function has not gotten any better over the last six months … as well as I can say that it hasn’t worsened either. So it’s kind of a wash out there. No better, no worse. In case, this is a winning situation. I didn’t really expect to get much better … my expectation was to prevent it from getting worse. So I’m pretty comfortable with this report.

All the x-rays came back clean … this is really good (best news of the trip). My problem here is ( and I was well warned before excepting this route in the beginning), that if the cancer pops up somewhere new, there can be no more radiation treatment for me. They don’t even like doing x-rays and MRI’s on me because my system is pretty much saturated already. Next time, it’s surgery at best. So this is a really good thing that nothing new is rearing up and attacking other bones at the moment.

The blood and oxygen intake of the tumor was not quite as cut and dry as we all would’ve liked. While the tumor has not entirely stopped absorbing these two things from my blood stream, it had greatly reduced its intake by ninety-five percent. Good and bad you might say.
It means the tumor is not entirely dead yet (in the beginning they told me this could take up to a year and it’s only been about seven months), but it’s obviously been heavily damaged and expected to continue going down till it reaches zero. That would be nice too.

Put all this in a nutshell … it’s looking pretty good. While the possibility of gaining back any lost function is becoming more and more unlikely, the possibility of “knocking off” the tumor is pretty darn good. To me, that’s a more then fair trade. It’s my belief, we’ve done pretty well for the time being. Doc seemed pretty satisfied too.

I was hoping not to return for a full year before being tested again, but Doc says that we shouldn’t and can’t wait that long yet … so current plan is to return once again in five or six months and do it again.

In the meantime, life remains about the same. Without shrinkage of the tumor, the pain management situation remains the same. Without being a hundred percent sure the tumor is dead, the uneasiness of the future remains about the same. But knowing that there has been no spread or new spots to deal with makes me feel a little more comfortable about the next year or so.

One of the primary things that helped me through that experience was that I wrote and photographed my way through it … and as many of you know I “blogged” a lot of it right here. I also managed to stash away as many notes as I could for later on … I had no idea what I might do with them … but I simply wanted and needed to get it off my mind, I wrote and photographed every day. No matter how bad or sick I was feeling, I made sure that I’d least make some kind of journal or blog entry and try to photograph something.

Flash forward a few months and you know I’ve been working everyday at my job, and running a part-time server and web-hosting business from home, and basically you’ve got a handle on the bulk of my daily activity. I’ve been working … and that’s a good thing, believe me, I’d go nuts without it.

It’s been just about 6 months since I finished treatment (last holiday season) and I feel like I’ve been learning a lot (actually an incredible amount) about living with cancer … after-all , that is my current situation. To live everyday with the challenges and discomforts, and all the other strange things that a cancer can do to your body and mind. I’ve learned, … adjusting as I go along, making life as comfortable and as productive as I can.

I’ve also learned that I can understand, and relate to, any other person’s life-condition. Which in itself, is a very powerful thing.
I find I have a commonality with so many people … as though I’m part of a group of special people that are surviving in a special environment that not everyone has the pleasure to experience. I mean that seriously.

I know there’s a lot of people out there that think “oh those poor suckers, how do they do it?” But do you know what I’m finding? What the truth is? There are many like me and you know, we don’t bullshit each other. There’s a silent understanding between those that are in a similar condition or situation …. and it can provide for a wonderful experience if you open up to it and just let it flow from you.
There’s nothing like being in the “driver’s seat”, first-hand experience is (unfortunately), the way to go here or at least it is for me. It’s this commonality, that brings me to my latest photography project.

I’ll leave out the story of my life’s photographic experience mainly because it spans over a lifetime and I’m not really sure that it’s relative to this project. I will say that since I was a teenager and had built my first darkroom, developed my owns films, printed my own photographs, I’ve never really stopped. Camera’s changed, darkrooms turned into computers … but the art of taking a relatively decent photograph hasn’t really changed.

Back to today: The Project,
Here’s what’s so strange… I don’t know if it’s some personic magnetism, some kind of karma, so called fate (call it what you will) … but since my own personal experience with cancer, which simply isn’t that long ago, I’ve met so many people with similar cancers, tumors, and other totally debilitating diseases … that it must be, meant to be. For some unknown reason this is being literally shoved in my face and I just can’t ignore it any longer.

Karma has a funny way of guiding you to where you ought to be, and then it’s up to you, to do with it what you will. Between that thought, and an uncontrollable desire or need to photograph and write about my experience, and the meeting of so many others, has led me to the point of bringing this experience to others in a way that may be useful. A way they’ve never experienced before. To see life with cancer under a different light.

What I’m hoping to produce are some “real-life” photo essays on life with cancer. That’s right, I want to photograph myself, friends and acquaintances, all with the commonality of cancer.

But there’s an different angle to these that I want to try and capture, that isn’t normally shown in the pamphlets, brochures, TV ads and all the typical places that the average person sees cancer.

Many of us have had a relative or family member that went through the cancer experience, maybe when we were younger and didn’t really understand what it is to live with it … or we’ve heard and read stories about the Lance Armstrongs of the world, but me?, I want to show real life.

I want to offer a message to those entering the “world of cancer” that this is what to expect, and to prepare for dealing with it. One of the most disappointing things in my life, was when I was first diagnosed with cancer and realized that for my kind of cancer there was absolutely no information available about what to expect. Not even after Google-ing it did I find anything on what to really expect. Let me tell you, that sucked.

How I plan (hopefully) to do it:
I’m hoping the subjects of the photos () will show a piece of their life that has changed or has been effected in some way because of their cancer. A piece of reality. But I’m leaving that decision up to them, whatever they want to show or whatever message they wish to convey. I’ll try and capture on film. Because they are in all different stages of their experience, I suspect it may take several sessions of photographing them, over a period of time. But I’ll take whatever I can get for my project.

What I’m most surprised at, is how “open” people (the ones I’ve already asked to partake in) have been with this …. it’s intensely personal and I expected to be refused by 99% of them …. but instead, I’ve had a 100% acceptance rate! I have to date asked five people to allow me to photograph them while they experience their “trip” and amazingly. everyone one has excepted.

Maybe it’s part of my having cancer that allows them to be comfortable knowing the photographer is in the same” boat”, or maybe it’s a chance to express their feelings, let out emotional stresses …. I don’t know, but it’s certainly not what I expected.

I know it’s an unusual thing to do, an unusual request to ask for, but people, all people seem to be interested in this . I knew I was interested … but never thought others would be so willing too. I think by allowing them (the cancer patient) to choose the activities, they seem to be expressing “life with illness” all be themselves and that’s the intent.

I’m doing most of the photos in old-fashioned black and white with a slight sepia tone. I think those photos tend to show emotion much better then color. I’ve added one to the bottom of this post for you to see the quality, of course these have been reduced in size for the web, but they average about 36 meg each. They could be printed as large as an average poster and be crystal clear.

I’m looking for shots that are powerful and express “life with cancer” … it can take hundreds of photos of each subject to capture this emotional expression that I’m looking for.

Now, I have not included any of the real photo’s I’ve taken for the simple reason that I’m holding them back until I have enough to do a size-able and impressive showing, so don’t expect to see any on the blog for some time to come.

As examples of the kind of expressions I’m looking for:
In my case, as odd as this may sound, one of the most difficult things I experienced in the beginning of all this and during treatment was shaving. I know that sounds crazy but here’s the scoop. In order to shave in our mirror, I had to bend slightly forward to see clearly … you know, move closer to the mirror, lean forward just a bit. However, this position was very difficult for me to hold because of my lower spine had been so messed up by the cancer and basically cooked during treatment. So one of my pictures is a photograph of me shaving in my new mirror that pulls away from the wall. A simple change in a bathroom fixture, that made a huge change in my ability to shave and care for myself.

Get the idea? … this is the type thing I’m looking for. Adjustments, changes, fixes … these are the things people aren’t told about, they’re not ready for. I also plan to write or ask the subject to write a small piece about their experience and what the photo is about. An extended caption you might call it.

What other things could be effected? Think about it?

Why am I doing this?
To be totally honest, I’m not really sure. There is simply some driving force telling me to be artful and produce something so that others can see what living with cancer is like … you know it’s not all bad, it’s a lot of adjusting and things you always took for granted don’t quite work the same. But we find ways around them and move forward.
Anyways, if you know me, and you see me with a camera in hand, I may be asking you to partake in this adventure. Yep, you’ll be asked to sign a photo release form, you’ll be welcome to digital copies of all your photos taken, and you may be helping someone in the future” get a handle” on what we’ve gone through.

If you have an interest in being involved with this, or know someone who may have … get in touch.

If you click on the photo below you’ll get a larger version for inspection of the quality. This photo probably won’t be included in the collection and it’s being posted only as an example.
A simple self portrait.
More to come.

The other day I wrote a little bit about “pushing the limits” after cancer treatments and I thought I’d comment a bit more about it. I think it’s an important subject to look at, just about everybody that receives any type of cancer treatment, is effected by low energy or will be.

It’s literally a daily battle, and I believe there can be several reasons to suffer from lower energy levels, then those you might say you’d normally have. Some of it is literally physical and some of it can be can be psychological and both, can be equally as dangerous to your health.

Before being actually diagnosed with cancer I felt my energy level dropping. I attributed that to age, and working really hard all the time. Long hours, raising a child, running a business, being involved with several groups, doing radio shows etc. etc. Busy, … sixteen to eighteen hour days were common and a ten hour work day was like taking a day off. No kidding.

Not unlike most people, this went on for years. So long in fact that I really didn’t notice what I was doing. Burning the candle at both ends doesn’t begin to describe the lifestyle. It’s crazy when I think about now, but that’s what life was like then, and it wasn’t long ago.

So last August when I was diagnosed with cancer, it was one of the most difficult things for me to deal with and face up to … and to be completely honest, I’m still dealing with it. Slowing down, letting things go, wasn’t in my vocabulary. Was my body telling me it needed to rest?

My doctor sure was … well after he rushed me off for treatment that is.

During treatment, the radiation was so overpowering that I couldn’t do anything but sleep. I’ll probably never know for sure what percentage, of that amount of sleep, was due to needing rest, and what was caused by the treatment … but I slept more then, than at any other time in my life, by ten-fold.
On a daily basis, after being treated (which took about two to three hours a day including travel time), I’d go back to where I was staying and go back to sleep, and I mean sleep. I was literally sleeping close to twenty hours a day! I think back now and still find it hard to believe.

I’d sleep for ten or so hours, drive to the Proton Center, get treated, drive back home and go back to sleep for ten more hours, and get up and do it again. It was almost embarrassing.
Of course radiation at the levels I was receiving, was causing a lot of this … it is without question exhausting. I don’t care how tough you think you are … it’s going to affect you. You may get away with it for the first week or so … but eventually, it’ll catch up with you.

I’m getting sleepy just writing about this and re-living it!

I think part of my problem was that I started off exhausted to begin with … but then who isn’t over working these days. I mean you basically have to be if you’re going to survive in today’s world.
Who’s idea was it anyway? the idea that we work all day, and every day in order to simply feed our families. What a ridiculous way to live! But we do, and we do it everyday. I curse the bastard that came up with eight, ten and twelve hour work day. Our entire economy is based on it. But let’s not get off on the political reasons why life is the way it is … for the sake of this writing let’s just understand that in this country we work too much, and too inefficiently, and that’s that.

Any young couple raising a family today is suffering for more reasons than I can put in this post … but they’re especially suffering from being over-worked or under-paid. I know families where both parents are working two jobs each and they’re barely able to afford to keep up … and that’s a crime. Who’s raising the kids?

While we’re off topic, I’m listening to the news while I’m writing this and it’s so freakin’ discouraging to hear all these stories about BP and the Gulf oil leak, Illegal Immigrants, the financial crisis, the wars in Pakistan and Afghanistan (yep, we’re still at war, in fact it’s been pretty constant since ahhh 1776?), BPA plastic in our drinking bottles, Autism in our kids, the evil Monsanto corporation, and the list can on for-ever. Our children are getting dumber and dumber, our society is falling apart and the main headline news is covering more and more on Tiger Woods then anything else.

What’s wrong with this picture? Talking about the Gulf oil leak, here’s one the things that really got to me today. On the news they said that a “cap” of seventy-five million dollars was what a company like BP was liable for, when it came to paying restitution for people’s livelihoods that were affected by the oil spill. We’re talking about the entire Gulf Coast of the United States.

BP profits are approximately ninety-three million dollars a day. Now, you tell me who in our government signed off on that deal? Which one (or group) of our wonderful politicians thought that’d cover the tab? How do deals like that get signed off on … and don’t tell it’s Obama’s fault. Can you say lobbyists? or payola?

Ok, ok … I don’t want to drift off on politics, we were talking about young couples trying to raise a family in today’s world. No, no, we were talking about the effects of cancer treatments including chemo, radiation etc.

Back on topic:
Now, add to this therapy induced sleepiness, that you’re usually not feeling very well, and you begin to get the idea, of just the side-effects of cancer treatment. At the same time … your body is working overtime fighting the cancer that running through your veins! So there are plenty of physical reasons why one might experience exhaustion during treatment.

Then there’s the psychological effect of having cancer. Or are you too “cool” to admit that something could have a psychological effect on you? While this may not appear to a factor immediately, it will be. It can have an incredibly powerful, almost depressing effect on you, and that alone can be draining, big time. Even if you’re keeping the spirits high (and you should be), it is still a force you have to deal with.

Now I’m saying this negatively or trying to frighten you, I mean it. Day after day, you slowly realize that having cancer isn’t like having a cold, or a sore throat, … not even the measles. You won’t wake up in a few days from and get over it, not even in a few weeks, … not even when they tell you, “you’re clean” or in submission.

At night, in bed, when it’s quiet and you’re alone with your thoughts, wondering if all these treatments of chemicals , radiation, injections , and scans are actually doing any good. It starts to “sink in” that this is for-ever. You’ll have to deal with cancer for the rest of your days.
I should say here, that this is one of the most important reasons why you should put as much effort as you possibly can, in keeping your spirits high, without getting carried away with thinking you’re miraculously cured. I’ve said before in this blog that I don’t believe in the positive thought theory (here’s the link ) and I still hold that to be true. Maybe the key here is finding a happy medium.

Don’t believe for a moment that if you go through a few treatments and everything will be great again, and don’t think you’re going to die in three days either.

Take some time and measure up your situation. Understand where you’re at. Start working at, or completing some of those goals you’ve always had, but never had the time to accomplish. Even if it’s something silly like throwing out all those boxes of stuff in the basement or attic.
Maybe you’ve always wanted to do something, something that meant something to you personally … what-ever that is.

Maybe this is a good place to stop for the time being. Know that energy is going to be low, and know that you can still do things that require energy, but that you simply need to adjust. We’ll discuss this again.

There’s a reason they call it “living with cancer”.

Now here’s a longer version of fine and dandy:

My last post was April 24th and since then a lot has happened and even a few things have changed. One of the more interesting items that’s been accomplished is that we did our last radio show on April 27th!

I written before about the reasons why we were going to stop broadcasting … but now it’s done. I’ve packed up the studio equipment, everything from cords and mixing boards to microphones and music, and along with all the other equipment that goes with standard broadcasting, boxed it up and prepared it to move to the StreamingOldies studio over in New Hampshire! Now that’s exciting and I’ll be posting more about that over the next few weeks.

What it does for me, is buy more time to work on finishing up some of my current projects, and more time for things like writing for this blog. I simple never realized, just how busy our lives were until I wanted to begin disassembling some of it. It’s been a challenge just finding the time to slow things down enough to begin the process of closing some activities down. I don’t like to simply walk away from things … I like to take them to the end and if I can, pass them on to someone that wants them, and that’s exactly what we’ve tried to do.

More time? Yes, I’d like to do a little traveling (which is another post on it’s own), and have some free time to work on some cancer related projects I’ve been thinking about. No, I’m not going away, I’m simply changing the things I’m involved in, and refocusing my energy on what’s of the utmost importance to me now. Life has changed. You might say I’m altering the matrix.

Even at home, I’m rebuilding our network for easier maintenance, adding new Windows 7 computers, network printers, wireless devices and so on … all in preparation of these changes that are coming.

Which brings me to an interesting point. One of the most difficult things about having and living with cancer, or any disability for that matter, and something you don’t hear about very often is the “time factor”. I know, I’m certainly not the only busy person on the planet, but I was (and still am), a very active type person … but scheduling time, for a cancer patient, can be, not only one of the most daunting tasks, but it also brings a factor of undependability.

First off, I’m now realizing that there is an endless stream of appointments to keep. I really, really, mean that. I have at least (at a minimum) one scheduled doctor’s, therapist’s, or some medical professional’s appointment every month … and, they are never on weekends. They are often at least an hours drive from the house or office. They always interrupt the work schedule, and they usually drain your mind and body for the day.

Then there are the forms and information requests that come in the mail from hospitals, doctors etc etc. that are working on me with this. Then, which could take a whole person’s life by itself, is the insurance company’s forms and hassles. Every step of the way, they are in touch with you one way or another to either cover an item or reject coverage.

Even last week when I went to get measured for a wheel chair, it took three specialists (a nurse, therapist and wheelchair company representative), in two rooms, at a hospital, two and a half hours, to check me out … and believe me, I’m a well documented case. That’s two and half hours of poking and prodding, and two hours of driving (one each way), stopping for lunch … basically, it blew the day away.

Of course, everytime you spend a day like this, you fall further and further behind in other duties whether it be work related or life-in-general related. You never catch-up. Often, this stuff can take two or three days a month!

Then, in order to receive the prescriptions I need monthly, either Sher or I have to physically drive down to the doctors office and pick-up a paper prescription. Now that’s a super pain in the butt … it’s the same damn “hoop” to jump through month after month.

They can’t just send it to you … no, that would be too easy … “let’s make the sick and dying drive to their doctors every four weeks for the same reason over and over” … it’s crazy.

It takes both Sher and I, the bulk of our time, every month, just to maintain life, and this is just because of the cancer and being sick.

There are several days a month when I’m not feeling well enough to function on any level, let alone trying to accomplish this type of stuff. Some mornings, it takes all the energy I have just to make it to the coffee pot let alone work and or appointments. But wait!

We’re not finished yet … this is just the part of life that deals with cancer. Now let’s add the everyday survival type stuff. Hmmmm … shopping, raising a child, house and home maintenance, car care, lawns, etc. etc. It’s no wonder that it takes the two of us, all day, every day, just to keep it together.

The point is, cancer people are busy, really busy. A lot of people don’t seem to understand that. Even doctors and hospitals, don’t seem to understand that making you wait an hour in their office can be devastating to the remainder of your day.

What does all this ranting mean? … who has time to be sick!

Well, now of course I’ve gone off on another rant about time, and have probably squandered another perfectly good hour of yours in doing so, and never got to tell you about the changes I’ve (we’ve) been making to change this situation.

Anyhow, I am relatively well, or at least considering the situation, I think as well as could be expected … just remember something, people with cancer and other serious illnesses and disabilities are busy people too. We like to be called upon to help and do things … but be sensitive about wasting our time. There isn’t always much time in general and none to waste.

Later in the week, I’ll write the original intent of this post .

I had a few rough days this past weekend of not feeling up to “par”, but am happy to say that it’s starting to lighten up quite a bit. Not sure what it was all about but I got that lovely leg pains again, as though aching deep in the bone. It does seem to have stopped again.

It could’ve been caused by over doing it. This weekend I played a lot of Wii and went swimming … so I got plenty of exercise that maybe I shouldn’t have. Plus my “little man” (Alberic) ran me ragged … as kids often do!

Besides that, all is relatively well.

For those that asked about, and wanted to listen to the radio show I have put links to it here … bookmark the page if you wish. You’ll see the links down at the bottom of the page.
Radio Show Link. Be aware the show is not about cancer … it’s about music, politics, and some light-hearted fun… every Tuesday Night.

You can also send an email to shabby@spoxtalk.com and get on the weekly mailing list. The only email we send out is once a week about the show. It simply serves as a reminder.