We’re enjoying the weekend with a little R & R before heading back into the real world Monday morning. We had a lot of snow this past storm and lot’s more coming this week. Will it ever stop?
I’ve made an appointment with an eye specialist for Thursday, March 3 at eight am. for the next round of information about the eye issues and if that doesn’t give satisfactory results, I’m off for a set of head scans.

At least I feel like I have a reasonable plan moving forward … no more of this “rush, rush blindly forward” stuff. From this point on, I move at my speed, in my direction and under my control.

BTW … I will never, never ever, trust the decisions of one doctor, or one hospital … again, without getting at least one other opinion and probably two more. I am slowing finding out the best opinion is probably my own self diagnosis. You know that feeling you get deep inside when something is wrong … well, it’s almost always correct.

This afternoon, around one o’clock we drove up to Dartmouth Medical Center, to the Department of Vascular Surgery for more advanced testing of my carotid arteries and to determine what should be done. If you remember yesterday’s post there were several different ways this could go, which were all acceptable to me and I was mentally and physically prepared to deal with whatever got presented as the logical way to go.

After the tests were finished, Dr. Eva M Rzucidlo met us in little consultation room, introduced herself, sat down and began by asking a bunch of general health questions, questions about the chondrosarcoma, and then proceeded to explain about the scans. As she started, I turned on my trusty digital voice recorder.

[Yes, I record all these important conversations and highly recommend you do too if the opportunity ever rises. It's amazing what you hear by listening a second and even third time. Even more amazing is what you yourself can say sometimes ... anyway, sometime tomorrow I'll put the recording in the audio section and you can listen for yourself.]

What came next was a pretty stunning statement … at least stunning to me because I was prepared to go through with whatever procedure they recommended including full blown surgery if that’s what it took to solve this and allow me to get on with my life. In general, I feel like I’ve almost lost two years dealing with this cancer … not that it’s solved or anything, but after the last trip to Boston I came out feeling like I could at least make a few plans for later down the road. I’m ready to move on. I know I have cancer, I know what I have to do to deal with it, and have learned what I need to do on a daily basis to get by. I also know that things could change at anytime … but I try to keep that as a background thought. I don’t dwell on it.

Anyways, to my surprise the doc said that my carotid arteries (both left and right sides) were just fine! I said the tests at the other hospital (Springfield, Vt.) said they were at least seventy percent blocked, and that I was in need of doing this surgery immediately … and they said it with real sense of urgency … like do it now! She looked at me and said they interpreted the scans wrong … there’s no way your arteries are blocked even half that amount.

At first, there was a sense of relief, and then a sense of “what the hell is going on here?”. Someone is either not telling me the truth, making a serious mistake or, I’m going crazy … and the last time I checked … I wasn’t crazy. She went on to explain other options like seeing another eye specialist to check for detached retina issues, brain scans (for possible brain tumors pushing against the optic nerve) … but was very clear that my arteries were not dangerously clogged.
In the end, I asked her to recommend an eye specialist for a start and if nothing showed up there, I’d go for the full head scans (which I’ve been trying to avoid because of so much accumulated radiation built up in me from the proton and all the scans over the past year).

We left. We left partly frustrated, part angry, part confused and really pissed off. After spending the better part of the day there, we left with less information then we had when we’d arrived. It sort of put me back to ‘square one’ after spending almost a whole week (and taking days off from work) to find out both places were barking up the wrong tree.

Meanwhile, I’m still having vision issues and I don’t know any more then when I walked in.

Now what? To be honest, I’ve lost faith in both hospitals. I have no way of knowing which is really making an incorrect diagnosis. Do I go for a third opinion?

Unfortunately, this isn’t over yet. My current regiment is to take a few aspirin a day (stroke prevention) and ride out the vision stuff until I get a solid, confident sounding answer from someone. Maybe it’s back to Boston. I’m frustrated and angry at spending a week on this and still I have no clue as to what’s causing the problems.

I’ll put up the audio tomorrow so you hear it for yourself … it’s been a long day, my neck hurts from all the pushing and shoving, my back hurts from lying flat on those tables, it’s near midnight and I’m really bummed with the results. What a waste of a week … more to come.

For those in tune to what’s going on … tomorrow afternoon I’m off the Dartmouth Medical Center for some more testing, and a meeting with Dr. Eva M Rzucidlo. The purpose is to determine exactly what path to follow in repairing my carotid arteries (mainly on the right side).

She has an impressive resume and I full faith that she’s a pro. If you remember a ways back, Dartmouth Medical Center is the hospital I turned down before going for proton therapy in Boston. I simply didn’t like their plan for treating my chondrosarcoma. That being said, I do believe they’ll be the best in our area for this operation.

The story begins:

Last Thursday (February 17, 2011), while at work, I experienced a really weird thing with my right eye. It literally shut off for about twenty seconds. I mean off, like you shut the lights off in the room, total darkness. The twenty seconds seemed like a long time at the time, but then as suddenly as it turned off, it turned back on! That was it for the day.

At the time, although I did think that was an odd thing to happen, I kind of brushed it off … well, not kind of … I did brush it off. There’s a logical reason for that too. There have been so many physical changes in my body this past year that I simply chalked it up to being on more thing I should mention at my next trip to Boston. At the time, it made sense … at least more sense then it does now. We all know hind-sight is always twenty-twenty.

While the sight was gone in my right eye, there was no pain, no dizziness, no head-ache, no nothing … I just couldn’t see out of it. I say this because it was an important factor in the decision of my not to saying anything at the time.

The next day Friday, I was outside talking to my friend Harry M. when it happened again … but this time it was different sort of. Instead of getting total darkness (as dark, as dark can be), my vision sort of split. The top half was pure white and the bottom half was pure black … now how strange is that? Slowly, the bottom half started to come back and within about ten seconds I could see my friend from the chest down … really. It was very odd to say the least. I could clearly see his stomach and legs … but not his shoulders and head! Literally, my vision was chopped in have just like you’d cut a photograph in half. Again, after a few minutes my vision totally cleared up and went back to normal. I mentioned to Harry that I my eyes were acting up and explained a little bit of what was going on. We went back to work. Again, the rest of the day was uneventful.

Saturday came along and while at home talking with Sher it happened again. This time although the effects were a little different, the temporary blindness lasted a tad longer. At that time I told Sher about it and we decided we’d call the doc on Monday, even though it was a holiday.

Sunday it happened again, twice in fact. Now … I was thoroughly convinced something was wrong. I’d lost vision five times in the last few days. I started thinking about what might happen if it occurred while I was driving, or doing something like cutting stuff up for dinner. You know how thoughts race through your mind when something weird is going on … well this ranked as weirdness to me.

I started thinking back to try and remember any other times this may have happened, but couldn’t think of a thing. There were other strange visuals too. Once I experienced total darkness with just a pinhole of light coming through … like looking through a pin hole in a piece of paper. All darkness except for the pinhole which I could see through. Another time my vision turned totally dark purple! Yes, very weird.

Monday, I went to see my primary care and told him about it. He checked my eyes with a large loupe for anything logically wrong but didn’t see anything. Knowing my history with cancer and tumors, his first thought was a possible brain tumor, but that we needed to clarify that thought with an eye specialist.

He left the room and started to make some calls. Sher was with him, and the phone got passed back and forth a few times between the eye specialist, Sher, and Doc … and finally was decided upon that I should have my carotid artery checked before anything.

The carotid artery is the big veins that run up the sides of your neck. They carry the blood to your brain … so yes, they’re incredibly important to supplying your brain with fresh blood. Without a clear blood flow, havoc can break out, there can be all sorts effects from slurred speech to blindness to all kind of numb feelings … basically, lack of blood to your brain is a stroke or mini-stroke … a very serious warning.

Now, I’ve been through a lot lately fighting the Chondrosarcoma and honestly not much has really frightened me up until this point. Cancer (at least my kind) doesn’t make you stupid or lose your mind … it’s a physical thing, and I always thought I could deal with any physical arrangement it could throw at me. Not that I wanted it, but that I could live full time in a wheelchair if I had too. I always thought, that as long as I could think clearly, I could make some kind of a living. Whether it was computer programming or sitting on the corner with a tin-can and my guitar … I could do something. With the cancer, whatever physical ailments I ended up with, I’d deal with it.

But your brain is a different thing. At least for me it is. I get shivers down my spine just thinking about being stuck in a mind and body that couldn’t communicate with the outside world. It’s a frightening thought and something I would not want to deal with.

I say all this because I want you to be aware of these things. Don’t blow off symptoms you’re not sure about. It only takes a few hours to visit a doctor … and the results of not visiting one can last a lifetime …. so go. I know for a lot of men, it’s a hard thing to do … you know, admit that you don’t know everything about everything. You know your body, and deep inside you usually know when something isn’t right, so don’t wait weeks and months to do something …. do it now.

Back on track. Now it’s Wednesday evening and tomorrow morning I go for a few tests to determine where we go from here. There are several directions that can be taken. One is a simple prescription for blood thinners, another is having a stent put in, and yet another is a surgical procedure that replaces the veins in your neck with one from somewhere else in your body (usually from the legs).

Hopefully, by this time tomorrow I’ll have answer, and maybe even checked into the hospital … we’ll see.

But as for you … I highly suggest you don’t fool around and wait if you experience anything like this. From what I understand and what I’ve read, I’m really lucky to get these little strokes as a warning sign that something was wrong. Not everyone is so lucky. Many simply stroke out and it’s too late or it’s a hell of a lot of work and rehab to get back to where you were.

More tomorrow.

… and NO, I’m not eating anymore cheeseburgers.

So that sort of leaves me hanging. Even after tomorrow’s tests, it could be days before an actual admission.

I guess I’ll head off to work for a few days and see what happens.

This all started about a week ago when I started losing vision in my right eye. A few times a day I’d totally lose vision for about five minutes at a time, and then it’d return. These are what they call mini-strokes, and what caused the sense of urgency.

More to come …. lot’s more. I’m off to work for the day!

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 .

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.

At around 10 am. this past Thursday morning (Oct 29, 2009), as drove up Storrow Drive in an attempt to make my first real proton treatment a little ahead of schedule, I got off at the Medical Center exit and rounded the corner and slowed down knowing I wasn’t going to make the light. That placed me at the corner of Grove St. and Cambridge and immediately my mind went into high gear thinking about the last post I’d written about Grove St.

Here I was again, watching, waiting for the light to change for what seemed like an hour. The whole memory seemed to flash by like a high speed film … well, a nightmare really. I just can’t seem to get that image out of my head, I also seem to hit that damn light every time I’m near it … and now being in the proton program there is no avoiding it. I have to pass through everyday, and every time I do … it sets my mind on fire.

Today was no different, I waited and watched them cross the small street and head down the path, yeah, I knew where they were going, and I was right behind. The difference was, that this time, I was a little more prepared. Prepared in the sense that I wasn’t new to cancer treatment any longer, I’d already been through all the IMRT stuff and the proton therapy was supposed to be even gentler on my mind and body. Now I starting to know my way around a bit, familiar with some places and folks in MGH and was at least comfortable enough not to feel lost in the tall building that line both sides of block.

Happy to be finished with IMRT and all the effects (even though there are’t any side-effects)it was having on me. I spent the last three days continuously feeling sea sick, physically drained and even a touch of mental confusion, and I don’t add the mental confusion part lightly. I take pride in my mind, I’m proud of the fact that learning new things, retaining information and a what I’d consider a decent memory, all came easy for me, and still I’ve always been able to hold onto a reasonable creative edge that allowed me add some artistic value to my work.

So if the worst thing I had to face in the new proton therapy was passing through Grove St. everyday, I basically thought I had it licked, a breeze, I’ll slide right through this treatment, this time. Experienced right? … solid, confident in knowing my way around and knowing just about exactly what I was in for.

The light changed and I made the turn on to Grove, and was making my way through to the Yawkey Valet parking area. It’s a small and narrow street, so narrow, and always full of people walking, … doctors, nurses, guards, patients, even construction dudes working on the building at the end of the block. It’s always busy, MGH Campus runs twenty-four hours a day and everything from delivery trucks to limo’s drive down it.

I dropped my car at the valet and had to walk about two buildings back, from the direction I’d just drove in from. No problem, I was cool, I made my way through the people, bumping shoulders, side stepping, twisting left, then to the right, and even occasionally looking into some of their faces, wondering what role they played in this doctor-patient world that I didn’t really knew existed 2 months ago. Well, I knew it existed, but never thought I’d be so involved in, not so quickly and deeply.

I found the Francis Burr Proton Center and slipped under the scaffolding that seems to have been there forever. It straddles the entire sidewalk and rises about 40 feet above it, lined with plywood boards and planks, well, you know the type I’m talking about, you can see it almost any city, and Beantown being no exception.

I reached the two huge glass doors and they opened up as if I’d said “Open Sesame”, like from Ali Baba and the Forty Thieves. The odd thing was, out of that entire side walk, with literally hundreds of people passing at any moment, I seemed to be the only one entering at the moment, or leaving for that matter. I stepped into the huge lobby, and stood alone under the twenty plus foot ceiling alone. Just me and a huge lobby wall map that showed all the offices, suites, gardens, restaurants, you name it, this building has it. It’s huge by any standard.

Stepped into the elevator and pressed the “T” button. OK, what the hell is a “T” button on an elevator? All the others are numbers or things like “LL” for the lower levels, but “T”?

The T floor is for Treatment. Yep, they keep that 150 million dollar cyclotron that I was about to get my first ride on, deep in the basement. One of only 4 operational Proton Therapy clinics in the US, the Francis H. Burr Center’s cyclotron (built by the Belgian company IBA) and is one of the world’s premier centers for radiation oncology.

There I was, alone on the elevator too, my stomach getting that all too familiar feeling that one gets when traveling downward at a quicker then natural speed, almost falling.

As the doors began to open, I heard music. Acoustic guitar strumming to be precise, and a bongo drum. Before the door opened entirely, I recognized the music to have a folk sound. Folk music? A woman singing too! As the door opened the only thing I could see on the other was another elevator door.

Cool, I thought. Solid, strong and confident me stepped out into the hallway and turned to left, took one step, and stopped dead in my tracks.

Now I don’t like to use the word “dead” much these days. I’m kind of “touchy” about it, you know, it hits close to home when hear it. To be honest a lot of things are now sensitive to me that weren’t before. Actually, and I’m not sure why … but even the Halloween stuff I see around bothers me. I don’t like looking at skeletons anymore, they remind me of X-rays and scans. They’re scary, after-all that the way my cancer was discovered. First time I saw it, it was on scan and I’ve seen a million scans and x-rays lately. Not that I run away from Halloween fun, I just don’t see it as I once did. Some of the masks show fear, or I think about the “eyes” behind the mask and it just kind of freaks me.

I looked down the hall and at that very moment, all the thoughts about Halloween, Protons, being alone, being dead … left my mind and flew out the window like a small sparrow that had been held. There was a whole group of kids, maybe twenty five or thirty, all mixed ages, nationalities, colors, all sitting on the floor listening to two female folk singers. Some singing along, some rocking back and forth, some on parents laps and some just staring into space.

These were all the cancer kids and it brought my heart to a screeching halt. All those feelings of self pity and all the crap I’ve been writing about just exploded in my mind. I know why they were all here, I knew and still had trouble excepting that all these kids were in as much trouble as I am.

Such a chill ran through me that nothing else seemed to matter. Yeah, it was kids day at the center, and they treat a slew of them, in all different stages, and with a variety of cancers that will get them in the end. The cancer will win on 90% of these kids. “God”, I thought to myself, “I really am lucky, so lucky, look at all I’ve done already. Fifty-six years of fun and life, yeah, there’s been good and bad times, like everyone, but at least I had “times” to remember … do these kids have that?

Those that sang, sang as sweet as any group of children and the voices of the two females sounded so wonderful, and at the same time haunting. The big tough me was brought to a new level of humble-ism that I didn’t know existed. So nice to see and hear, yet so frightening and scary that my mind simple went blank. At another time in life I would’ve jumped in and sang too … I just couldn’t do it. And at the moment, I hated myself for it.

How could anything they do to me inside the proton center matter now? “I hate Grove St.”, everytime I come here I get slammed by something more emotionally powerful then the last time. Every time I think I’ve mastered, been in control of, or at least had a handle on what I was doing here with this cancer stuff, Grove St throws something at me that just humbles me and hits like a real ton of bricks … literally.

My heart just got torn out by seeing these kids with leukemia’s, cancers and who knows what else, and you know damn well they heading down a dead end street, and I’m worried about me! “You useless, greedy bastard, how could you even be think about yourself when in front of your own eyes, you can see something so much sadder and powerful then your own little problems?”

Well that straightened my head right out, no more worrying, just go right in and do it. I registered at the desk, ran my card through the scanner, and spoke with Paul. Paul is the gentleman that runs the office. He is one of the most organize-able people on this planet, he knows every patient by name, adult and kid, and greets them with a warming smile and whatever information they want or need to know , he has in his head and often can tell you before you even ask for it.

Of course, to make matters a little more confusing “feelings wise”, Paul was dressing in skeletons outfit for Halloween!

My emotions were up, down, left, right and swirling when I eventually walked into the room where the proton machine was setup. I looked at this huge monster, this frankenstien of a machine and of course the only thing I could see were kids strapped to it, hanging in the middle of it on the treatment board!

I settled my mind as best I could and proceeded to take off my jacket and shoes. Three technicians introduced themselves and started to explain what I should expect out of this treatment today.

I looked around the room as they spoke to me, trying to catch a glimpse of all the equipment before lying down on the treatment board and being driven out into the center of the huge tube that houses the barrel, that releases the bouncing, high speed protons at your skin.

To be continued …

Woke up at 5:30 am., and got ready to head in to Boston for my last IMRT treatment. I was feeling pretty good but a tad sleepy as though I hadn’t quite got enough sleep the night before. I chalked that up to not having enough coffee in the morning before I hit the highways that lead into town. I never have enough coffee anymore in the mornings, and that’s intentional because I found it impossible to lie perfectly still during the sessions, so I wait till after, and then have my fill of coffee afterwards. That’s been working fine all along, but today, I just couldn’t get the “sleepies” out of my head.

I got to IMRT slightly early (rainy, but light traffic), and to my surprise, which almost never happens, they were ready for me immediately. “Great”, I thought to myself, “I’ll be outta here before 8:30!”. Sure enough, by 8:20 am., I was back on the road to Nahant and all the traffic was on the other side, heading into the city.

The whole IMRT team was excited for me because today was my last day of treatment from them. Like a graduation, they all shook my hand, wished me well, told me to stop by any time and say hello and let them know how I was doing. Nice, what a great bunch of folks. They have a tough job there, maybe not physically, although they do work some rough hours at times, but the mental side of it is tough. All day long they deal with people like me, some better, some worse, but all of us are screwed up in ways you don’t always see from the outside. I’m thankful for what they’ve done … and told them so. I told them they were life savers … and they are.

About half way back, I started feeling sick, tired and drained. I could feel my stomach churning as though I hadn’t eaten in 3 days, which just wasn’t true. I had a great dinner last night … as a matter of fact, it was the first dinner I cooked myself while in Nahant. Herb was here, and we sort of looked at each other, and without saying anything, not a word,  as if through some sort of mental telepathy … we decided we were sick of eating out. I was feeling good at the time and volunteered to cook … and cook we did!

We quickly drove across the Causeway and bought two perfect steaks, fresh spinach, mushrooms, and some red potatos.  Here we are, two grown men in the super market, shoveling all this food into our shopping basket … like two kids in a candy shop. We rushed back, fired up the BBQ, and cooked a fine meal.

Anyways, I wasn’t feeling ill because I haven’t eaten. My appetite has been pretty good all along. Granted, I don’t eat three squares a day, but I never have. At best, I’ve always been a “skip” breakfast, light lunch, but good dinner person. Well, I have to add here that I often have several snacks in the evenings.

By the time, I got back to house, I was feeling really lousy. I mean maybe the worst I’ve felt since all this started. Now it was not only my stomach freaking out, but I was having waves of chills and sweats coming through me almost as fast as the waves were crashing on the beach. I walked in the house, called Sher (like I do every morning), told her I just ‘had’ to lay back down, and literally, crawled back into bed. It was about 9:30 am.

It was a windy, rainy day here on Nahant, gray and cold, and I pulled the blankets up over my head, and fell asleep in what seemed like instantly. Something (some noise outside from the wind) woke me at around eleven, and when I opened my eyes the room was spinning … you know that feeling, like you’d drank to much as a teenager. I had to reach out and hold on to the side of the bed to prevent myself, from what felt like, I’d falling off the thing. Damn, don’t you know it, I had to pee too! I tried to get up, but just couldn’t, I fell back asleep for another hour.

This time, when I awoke, the room had calmed down thankfully, and I got up, pee’d, drank a huge glass of water, and went back, once again, to sleep.

Finally, around two o’clock in the afternoon, I woke up and felt slightly better. The stomach thing, and the dizziness were gone, but I still wasn’t feeling quite right. I was soaking wet from the “sweats” and everything on body sort of hurt. I made another pot of coffee, thinking I’d start my day over, because this was no kind of day to live, to begin with. I decided I’d try and shower and shave, you know, literally start the day over.

Shaving was painful, I know that sounds insane to declare that I could painfully feel the razor cutting every, single whisker on my face … but I could. It actually hurt to shave my head and face. So much in fact, that I didn’t even finish the job.

“What the hell”, I thought … “what’s going on?”. I just couldn’t snap out of it, I’ve had bad days before, but my goodness we all have … but this was awful, and is lasting all day!. “did they zap me incorrectly in treatment today?”, “am I getting H1N1 flu?”, “am I dying, right here, right now?”. I took a few painkiller and went back to bed.

As I laid there, I started thinking about how many days in the future I may have like this, and what I should, would, or could, do about them. It’s scary to think that on any given day, I could feel like this. Without any warning, without any reason, without a way of dealing with it. How do I conduct business, work, make appointments etc etc., never knowing if I trust myself to complete the days tasks at hand.

What a frightening future. A day, in a life with cancer … is that what I experienced today?

It’s difficult to explain, what a pain, in your bone feels like. I realized later in the day, that the pain that rips through my bone, is the primary pain, and that the stomach pain,  nausea, sweats, dizziness, and all the other crap that’s goes with it, are mere side-effects of the bone pain.

Often, while I’m on the treatment machines, deep in my mind, as the buzzing sounds click in and the intense radio waves are running through me, I imagine (in my mind), that I’m scooping up the cancer cells (or their energy) and swirling them around and around, like mixing chocolate pudding,  and sending them in a downward spiral, into an abyss, well below the surface of the earth. Sometimes, I can get them as far as the earth’s burning iron core, where they are destroyed forever.

I can feel them leaving my body, or I should say, losing their grip on my body, rattled and confused from the intense radio waves, they let go for a moment. During this fleeting moment, I have control over them! … and it allows me, to rid them, from my body.

Tomorrow, the real heavy proton therapy begins, at 11:00 am. The band, begins at 10 to 6, when Mr. K. performs his tricks, without a sound.
No food or drinks will be served.

Tickets are on sale at the front desk and all proceeds will be donated the Egg Rock Bird Sanctuary.

I’ve written for an hour now … I’m going back to bed.

One of the things that’s been driving me crazy from the get-go of this cancer thing, is that there seems to be “0″ as in zero, support or support groups, for young children with a parent that has cancer. If there are any, they awfully well hidden. If I it make through all this, and I still have any energy left, even close to what I’ve had before, THAT is where I’m going to focus it.

It’s an unbelievable feeling to sit in a doctor’s office and be told you only have a short time to live and you’d best rush to get all your “ducks in a row” … but that’s nothing, it pales, in comparison to going home and telling your family. But wait, it gets even worse when you have to explain to your children. The words “Dad has cancer” just don’t want to come out of your mouth. They can’t, they stick somewhere between your heart and your brain and they dribble out of the corner of your mouth jumbled like a bag of bad letters in a Scrabble game.

Its amazing how poorly we’re prepared for an event like introducing cancer into a child’s world. Yet it’s so common. According to the state of Vermonts most recent online report on health statistics, there are more then 26,000 Vermonters currently living with some sort of cancer. Granted, they are all not life threatning, but they certainly are life altering … and wow! no support groups for the kids. That ain’t right my friends … that’s just not good enough.

Cancer is a “hard” word to most adults to say … they don’t want to hear. It’s absolutely terrifying to a child.

It’s gotten me angry.  Yeah, there are a few books and pamphlets out there … but that don’t cut it for kids.

I’m heading for the circus in the morning!

Tomorrow, (Thursday) is a big big day! At 7:00am in the morning they want to CT scan me for more cancer in my body … then they want to take some blood samples too. But why 7 in the morning I ask.

Now let’s see, I live about an hour from the hospital, so that means I have to leave the house by 6am … but I have to be awake enough to drive too so that means I have to get up about 5am … but wait, I’ll want to take a shower before going to see the doctors … so now we’re talking about 4:30am … now how’s this good for me? … oh wait, I can’t have my coffee either. This is cruelty my friend … it’s a conspiracy to make the sick, sicker I tell you. But I do get to drink some liquid garbage so the scans are clearer.

Before I had this cancer I didn’t do 7am well … what the hell’s the hurry? They’re making me feel crappier keeping these appointments.

Everything seems to be “rush rush rush” …. until its vacation time for the Doc or some other thing. I may not have much of life left … but I still have a life … and I want to live it.

This is the last ridiculous appointment I’m keeping. You hear that Doc? … “I ain’t doing this no more, no way!” … it’s too disruptive to me, my entire household … even my dog is upset! No more early stuff … let’s do it after dinner from now on.

If I continue to keep this schedule up, it’s going to insure that I spend time in hospital … from exhaustion!

I have to go to work too you know, it’s not easy to program on a tired mind.