I remember spring actually being a season, like when I was a kid. Where it lasted for five or six weeks, flowers bloomed, and grasses went from winter browns to a lovely spring green and oh yes, those beautiful, gentle spring rains … but no more. Times are a changin’ … and it’s a damn good thing there’s no global warming … can you imagine?!

I’ve been feeling reasonably well, you know the routine, good days and bad days and that’s to be expected. I do find the hot weather equally as bothersome as the extreme cold of winter. It tends to drain my energy at an uncontrollable rate … it’s difficult to explain. Draining might be the word, but then again … just the simple act of getting older, is draining in itself.

Dealing with cancer on a day to day basis does have it’s challenges, and just like everyday life, we have to rise above them and push forward and onward. No different then anyone or anything else that you wish to move above.

This past weekend, to my total surprise, I heard Alberic playing a tune on his guitar that I hadn’t practiced with him or taught him. I listened, and recognized the melody but couldn’t bring the name of the song to mind. He saw me listening and asked if I knew the tune. I replied yes, but that I couldn’t remember the name. He played several riffs again, I listened again.

You know how it is when you know what something is, and just can’t remember exactly what it is you knew. Yet another sign of getting older? … gee, could it be?

After listening again I finally asked what the name of the song was. My twelve year old Alberic casually replied “it’s ‘The Drunken Sailor’ Dad, ever hear it?”. At first I thought to myself “why the hell is a twelve year old playing songs about drunken sailors” … and then I started to think about the tunes I played when I was learning to play and realized that it (The Drunken Sailor) wasn’t really that bad. I played lot’s of old crazy songs when I was young, and to be honest … I still do!

The Drunken Sailor is a traditional sea shanty … a folk song, and like most old folks songs there are dozens, if not hundreds of verses. I mean that’s what makes it a folk song … folks adding their own lyrics and passing it down. Hey, someday I’ll write about folk songs … it’s a great topic.

I smiled and acknowledged his skill at playing it, asked him to show me the chord structure … in which he immediately got up and walked over to the keyboard (even though he was playing guitar), and proceeded to explain the chords and structure to the song.

Then we sang a few verses:
Chorus:
What’ll we do with a drunken sailor,
What’ll we do with a drunken sailor,
What’ll we do with a drunken sailor,
Earl-aye in the morning?

Put him in the long boat till he’s sober,
Put him in the long boat till he’s sober,
Put him in the long boat till he’s sober,
Earl-aye in the morning?

Shave his belly with a rusty razor,
Shave his belly with a rusty razor,
Shave his belly with a rusty razor,
Earl-aye in the morning?

Put him in bed with the captain’s daughter,
Put him in bed with the captain’s daughter,
Put him in bed with the captain’s daughter,
Earl-aye in the morning?

Hmmm … I think he’s getting a real handle on this music stuff … amazing how fast kids can learn. Keyboard, drums and guitars, our house is starting to look like a music store! …. but you know, that’s just fine with me

Well, to make a long story short … I went off to see my primary care doctor Monday to ask about it. Once again my doc ordered the right tests for me and by the end of the day I knew I was in for a big one. Yep, tomorrow morning (Feb. 23, 2011) I go in for at least carotid artery surgery and who’s knows … could be a major bypass situation.

Gee whiz … and I thought things were just beginning to calm down a bit from the chondrosarcoma. Here we go again… nothing like a little excitement in life.

Hey, over the next few days … you can call or email Sher and help calm her down .

If all goes well …. I’ll see you all in a few days.

To learn more, Google carotid artery surgery … you’ll get the drift!

BTW … I ordering a whole new body from Amazon as soon as I get back from Dartmouth. This stuff is starting to get old .

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!

The clerk, as she was handing me the change back suddenly smiled and blurted out, “that’s what I want … one of those”, and she pointed downward towards the counter near my wallet. For a moment, or I should say, that it took a moment, for what she had said to register, and then I still didn’t know or realize exactly what she was pointing or referring too.

I politely smiled back, … and then for a moment, my eyes and mind didn’t know where or what to focus on. It was only a split second, although it felt much longer and frankly, it was beginning to feel awkward. Well not really awkward but I didn’t want to appear stupid either!

I’m sure, for anyone that’s ever worked in that type store, that days can go by that are just full of funny, odd, weird, customer situations. I’d think you’d have to have a good sense of humor to work in the average convenience store .

….. I was still quickly trying to put together (at least in my mind) exactly what was going on before making eye contact again. Not being sure of what to do, I glanced down and reached for my coffee and change when I realized my wallet was half open and partially hanging out was my new medical marijuana card.

I’m thinking “this is what she’s referring to”. I looked back up at her and said … “no, you really don’t want this … you don’t want to be sick enough to need it, and you don’t want the hassle it takes to get it”. She then said (still smiling and grinning), “oh it’s worth it … you’re a lucky dude”.

I was in a rush and didn’t really have the time to sit and explain to this young person what it was really all about, but maybe with a little luck she’ll read this and understand the circumstances it takes to be in this status.

Truth be told, the thrill or fun of smoking a little from time to time is long gone. The purpose it serves for me now is two-fold … appetite and nausea. Without it, I’d consume much less of the foods I currently do and the nausea that comes along after any meal would be overwhelmingly a turn-off. Besides … it’s one thing using it for entertainment, and another because you have to … and the latter is the position I’m in.

I don’t think the average person realizes the incredible difference it makes with cancer patients. The typical meds they give you are pretty powerful, they without a doubt, dampen any pain or physical discomfort one might experience . Although I don’t usually take them during the day if I can help it because they effect your ability to work, drive and anything else you may be trying to accomplish.

Once in awhile if I have something physical that I have to do around the house I’ll take one during day time … but in general I stay away from them as much as I can. However, when I get home from work and most of the things I have to do are finished for the day … then I take one. This solves all the aches and pains stuff … but the side effects are almost as bad as not taking them.

OK … you do get pain relief, but they make you pretty nauseous too. So nauseous in fact that the idea of eating is just simply a huge turn-off. I mean the last thing on your mind is food after taking one of these. So what do you do? During the day … I deal with the pain, by the time it’s lunch time I can usually eat something simply because I starving. I try and eat just enough to stop the hunger pains, but not so much that it makes me feel ill. That’s a difficult balance, but on most days, it’s enough to get by.

I guess what I’m trying to say is that I’m nauseous during the day because I haven’t taken the prescribed meds and nauseous in the evening because I have! This is where the medical marijuana helps. One or two draws off the pipe and all the nausea is gone … within minutes. Nothing else like it. Not enough to get “high” or stoned feeling … just enough to have one good meal a day, in peace.

So while I’m not saying it’s for everyone, it does work for this problem, and it does work for me with minimal side effects.

Recently there’s been a lot of discussion, not only in Vermont but across the nation, about legalizing marijuana … especially for medical use, but I have yet to see a state get even close to setting it up properly with the patient in mind, and that includes Vermont … and maybe I should say, especially Vermont.

Maybe we’ll talk about that next post. Now I wish I had taken the time to explain to that young clerk what it’s all about … maybe next time .

When I got home from work today, Sher sent me a link to this article. It’s the first mention of Chondrosarcoma that I’ve seen since my own experiences with it. This is the “other” option that I had, the one I didn’t take … and I still have full confidence on my decision. I wish her the best of luck.
There are two articles, with links to the originals … I’ve cut and pasted them here because so many times the articles on news sites seems to disappear.

One of the things I find amazing is that there is absolutely no mention of Proton Therapy. It sounds like the doctors gave her a choice too: surgery or death … it makes me wonder … really wonder.

Article 1:
‘Cut-in-Half’ Mom Says She’s Doing Just FineUpdated: 2 hours 10 minutes ago
AOL News (Sept. 24, 2010) – So complete was her faith that she’d be just fine, Janis Ollson didn’t wake her children or say goodbye on the morning surgeons were scheduled to cut her in half.

“We went in and both of us were at peace. There weren’t a lot of tears shed,” she said of the day she and her husband walked into the Mayo Clinic for a never-done-before surgery that would separate her body so doctors could remove half of her pelvis, one leg, her coccyx and part of her lower spine.

Ollson, surrounded by her two children and husband, Daryl, appeared this morning on NBC’s “Today” show to talk about the ground-breaking surgery to remove a fast-growing, rare cancer that had invaded her lower body while she was pregnant with her son Leiland, 3, who was delivered by cesarean section before the operation.

The 31-year-old mother from Manitoba, Canada, wasn’t afraid. “I knew my options were either do the surgery or certain death,” she said. Her husband wasn’t always so certain.

“I was a mess. I couldn’t tell you today how I made it through,” he said, holding a squirming and sleepy-eyed Leiland.

The Ollsons have become somewhat famous after Janis agreed to appear in ads for the Mayo Clinic in Rochester, Minn.

Leiland clearly wasn’t impressed with all the attention. “I want to go home, daddy,” he said, sliding to the floor during the “Today” interview. His big sister, Braxtyn, 7, rubbed her eyes and yawned.

More than three years after her surgery, Janis said she is cancer-free and feels good. At home, she zips
around in a wheelchair. An artificial leg and a prosthesis that fits around her waist allow her to walk with cane.She drives her daughter to school on an ATV.

The couple renewed their wedding vows in May, on their 10th anniversary, and Janis, leaning on Daryl in a long white gown and bolstered by a cane, was able to walk down the aisle.

“We’ve been through a lot,” she said this morning. “Like the vows say, I’ll be there for better or worse, for richer,
for poorer. And we were just joking, saying, we’ve been through everything except the richer part.

http://www.aolnews.com/health/article/cut-in-half-mom-janis-ollson-says-shes-doing-just-fine/19647256

Article 2″

Canadian Mom Thrives After Cancer Removal Cut Her in Two
First-Ever ‘Pogo Stick’ Treatment After Pelvis, Lower Spine and Leg Removed

These days, Canadian mother of two Janis Ollson is known as the “miracle mom” after surviving an experimental surgery that literally cut her in two in order to remove cancerous bones from her midsection.

Suffering from a rare bone cancer known as chondrosarcoma, Ollson, then 31, was told by doctors in 2007 that her only chance for survival was to cut out the cancerous bone tissue in her pelvis, lower spine and left leg, a procedure that would literally leave her cut in half.

The surgery would sever even her good right leg from the top portion of her body and it was unknown whether surgeons could put her back together again.

“I was in complete shock” on hearing the news, Ollson told the Winnipeg Free Press. “I felt like I was going to throw up.”

But hope came in the form of a call from the Mayo Clinic in Rochester, Minn. Although the procedure had never been performed on a live patient, surgeons there were willing to try an experimental “pogo stick” rebuild that would use bone from her amputated leg to reattach her right leg closer to the center, at her spine.

The tumor removal left no bony continuity between her torso and her remaining leg,” Dr. Michael Yaszemski, the Mayo Clinic surgeon who invented the procedure for Ollson, said . “The novel part of the operation was to restore that … continuity using bone from the leg that we had removed.”

While others in her position might have chosen to allow the cancer to spread, living out the remainder of their lives with limbs intact, Ollson chose surgery.

“Once you have kids, that’s not an option,” Ollson, now 34, said.

So she put her hope in the experimental treatment and the doctors at the Mayo Clinic. The procedure required two surgeries, performed a week apart; one to remove the bone, the second to put her back together.

Pain in Pregnancy Reveals Deadly Cancer
The first warning sign for Ollson was severe back pain that came on during her first pregnancy that made it impossible for her to work by the end of her pregnancy. The pain lessened after her daughter was born but started up again years later when she became pregnant with her son.

Doctors found nothing wrong with her and although she was desperate for relief, there was nothing more that could be done, or so she was told.

“I went back home feeling very alone and misunderstood,” she told the Winnipeg Free Press. “I didn’t think people believed me. I knew it was a whole lot worse than anyone thought.”

In February 2007, after months of suffering with no relief, Ollson had had enough. She had her husband, Daryl, take her to the hospital where she was diagnosed with pregnancy sciatica, a form of back pain caused by pressure on the sciatic nerve.

http://abcnews.go.com/Health/CancerPreventionAndTreatment/canadian-miracle-mom-thriving-surgery-cut-cancerous-midsection/story?id=11709331 

Note From Bob:

After reading these, I’m still amazed that hospitals and surgeons are shying away from proton therapy. If anyone out there knows why … I’d love to hear from them.

Janis, we love you and wish you the best of luck.

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.

For those interested in our recent Boston trip, there are lots of photos here: http://picasaweb.google.com/116405034524500132179

I had and still do intend to write more on Boston but simply haven’t had the time to do so.  

One of the things that’s been keeping me busy is that I finally got my wheelchair … and let me tell you what a difference it made. I have planned a post (with some photos) about it for this weekend.  Hopefully Alberic, who took most of the photos on the Boston trip will help me take some pics of the chair and explain the difference between a well-made wheelchair and the typical chair you see at most hospitals.

Last weekend I went to the mall in Rutland …. and what a pleasure! Now I’m personally not very big on malls, and there’s between little and nothing I want to purchase from them … but it was great to be able to take Sher and let her go do some shopping … which is something she does  enjoy. Earlier this evening, we went out and walked the dog together … something I haven’t done for almost a year. OK, I didn’t walk, I wheeled … but still, it was great to be able to go along.

This weekend is also Father’s Day and we still have to do a bit of celebrating for Alberic’s birthday … so it’s going to be a busy, but fun time. Al’s last day of school for the year was this past Wednesday, and next year he’ll be going to a new school.

We finally got all the light fixtures replaced in our house from last winter’s electrical disaster.  Can you believe it took this long? I have to admit that this time, it was not the insurance companies fault for slacking … we (well, mostly Sher) had a really, really hard time finding replacement lights. I know that sounds crazy especially since we do a lot of shopping online, but it was very challenging to find the right things. Crazy, but we’re both happy it’s finally finished. They are installed and lighting up rooms! Life is wonderful!

I’m also beginning to do research on the possibility of using medical marijuana. It’s an incredibly complex set of rules, regulations and hoops to jump through but the rewards can be extremely helpful. Let me explain how this could work for me … or better yet, let me leave for my next post. Ohhhh … so much to write about.

It’s getting late and I have to work tomorrow morning, but over the weekend I’ll try and write a clear explanation of why I want to try taking that route, even though it’s definitely not the easiest way out of the daily pain and nausea issues I face. It’s bedtime for me …. good night Alberic.

We had a fantastic hotel room on the River Charles that overlooked both the river and parts of Boston skyline. That’s one of the things I love about Boston, it’s big enough to have the feel and all the great things cities have to offer,  yet small enough that traveling around it is easy and simple whether by car, train, bicycle, boat, foot, wheelchair or any other mode of transportation you can think of. It even has a Segway rental!

Now my last trips to Boston weren’t exactly filled with fun and joy by any means … but this one was different, I enjoyed this trip to the max. Alberic hasn’t had the chance to visit many cities and I think he really got a taste of what life can be like there and it’s many offerings, and Sher has been many times but not for a long time so she felt right at home.

Our primary goal was to attend Mike’s graduation at MIT (Massachusetts Institute of Technology).  Now if you don’t know anything about MIT, I suggest you Google it because it’s just too much to write about here.  I will say that it is one fantastic place, where our future is being designed by the worlds brightest students. Brilliant is probably a better description. I have a new found faith in the future … now if we could only stop warring.

This year, two thousand, five hundred and thirty-three students graduated in every field of science I’ve ever heard of and a few that were new to me.  That’s fifty times the amount of students in Alberic’s entire school!

Being disabled, I must say that we were very well taken care, and help was available from the moment we reached the grounds, right up until the moment we left. Everyone was so helpful and courteous that it was hard to imagine needing anything more.  To say the least, the entire experience was awesome.

That being said, I should mention here that living in the city of Boston appears to be much more friendly towards those with a disability, maybe the word is “disability-friendly”.  Almost everything appears to be set up for wheelchair access.  Basically, getting around this beautiful city in a wheelchair is a no-brainer. You can wheel anywhere you can walk … and Boston is a “walking city”. Everything is close and compact. I guess I’m sounding like a travel agent … but it’s true.

The graduation ceremony was simple awesome. Ray Stata gave the commencement speech and basically lit the entire place on fire! Not bad for a 75 year old.  If you’re not familiar with Ray Stata, Google him and read up. We wouldn’t have a tenth of the technology today without him. Below is a pic of the Stata Center in which Ray, his wife Maria, and Bill Gates have built on Massachusetts Avenue near MIT.

But there was much more to the ceremony then Ray Stata’s speech. The student president gave one of the most inspiring speeches I’ve ever heard, let alone from a young person, and really gave me hope for the future of humanity. If this is an example of the direction that MIT is taking its students, then I have all the faith in the world that mankind will solve all these problems that our world faces today.

There’s a lot more to write about this trip, and over this coming week I have lots of photos and stories to share, but that’s it for this evening.  We also went to the Museum of Science, had lot’s of great meals, and made plans to return.