What Matters to You?

One thing I wasn't taught in journalism school, but learned nonetheless, was how to decide whether a story had merit or not.

Upon hearing of any news or potential story idea I would ask myself, "How does this affect my life?"

If the news could have an affect on my life, it probably could have an affect on other peoples' lives, and I instantly considered it worth reporting about.

There are a lot of stories, however, which I can't see any value in covering. I ask myself how it will affect my life, and I can't see any way that it would. Often times those stories are like slowing down to stare at a traffic accident. It's not productive. You're not going to gain anything from it. It's just a curiousity and people can't help themselves but gawk.

I must say, though, that decisions by the media on what to cover stem directly from what people want to read or see. If more people were interested in hearing about a celebrity divorce rather than the growth of Democracy throughout the Arab world, than the news will give people what they want.

We had a lot of headlines this week that I'm still trying to figure out "how does this affect my life?"

The death of Michael Jackson? Doesn't affect my life. I don't need to hear about it.

The divorce of Jon and Kate from Jon and Kate Plus Eight? Doesn't affect my life. I don't need to hear about it.

The passing of TV pitchman Billy Mays. Doesn't affect my life. I'm not interested in it.

The passing of Farrah Fawcett. Well she did share her cancer experience, which had an impact on people. I was interested in this aspect of her regretful passing.

But all in all, I've just been swamped by news this week that I really just don't care about. It's all just curiousity, like slowing to take a look at that traffic accident (something else I don't do).

I would love to hear and read more about the debates going on in Washington to reform health care. It gets very complex. I heard one proposal was more than 1,000-pages. That would affect me. That would be something I just couldn't learn enough about. That could be important information.

But instead, I know more about Jon and Kate's impending divorce. Great.

I guess if I need to learn anything important I have to put my reporter's cap back on and go out and find it out for myself.

Resting

I want to get back to work, get back to it, take care of business...but I need a couple days to recover from the Gamma Knife radiation treatment.

I have to pull myself aside, and have a little talk with myself each morning. "Now Jim, just take it easy on yourself. You've just had very high doses of radiation targeted into five areas of your brain."

The Gamma Knife has been marketed heavily by hospitals, competing for the very expensive treatment. Part of the marketing promotes how minimally invasive the treatment is. The pitch proclaims that most people can return to normal activities the next day.

Well it is a minimally invasive treatment, especially compared to the alternative of traditional brain surgery. But I'm not so sure how many people are returning to normal activities the next day.

First of all, the treatment poisons the tumors. It does not just magically, instantly, remove them. Any tumors in the brain, no matter how small, can cause some craziness and a general sense of feeling "off." And my five tumors are now agitated by the radiation...so...I have a general sense of feeling off.

Secondly, radiation is poison. The Gamma Knife may be able to pin-point the areas to release radiation to. But, it is still very high doses of radiation. And it is still exposing the body to radiation in general, a nasty poison for the body to try to digest.

Last, but not least, are the four large knots on my head from where the metal frame was screwed to my skull. I still can't shampoo my hair without grimacing. Drying the hair with a towel hasn't been easy either. So I stole Barb's hair dryer the other day, but I ended up looking like a troll doll. So I haven't gone back to the hair dryer.

So I just remind myself to rest, relax, take it easy. I try to do some light physical stuff to keep the blood pumping. I try to eat healthy and in good proportions.

Sleep patterns have not been great with these bumps on my head. But when my body asks for eat or sleep, I try to comply, and just roll with it, at least through this weekend. By Monday I hope to get back to a more normal schedule and start exercising again.

A Little Beat Up But Smiling

I feel like a couple guys grabbed me, pulled me into an alley, and stomped on me for awhile last night.

My head is swollen and bruised this morning, very tender and sore.

There was a couple of guys, and a couple of girls, but they were doctors and nurses who beat me up like this. They beat me up for my own good, and they were quite professional about it.

Yesterday was my Gamma Knife radiation treatment. It proved to be a very long day. But everything went well.

There were only two patients scheduled for the Gamma Knife yesterday. We were both there at 7 a.m., and both had somewhat complex treatments ahead. I don't know why they scheduled us both for the same time. But we lost the coin flip and the other patient went first.

They did fit the "frame" to my skull awhile though so they could at least get a MRI scan and plan the treatment. I was loaded up with drugs to relax me, and my skull was numbed, then the frame was screwed to my skull in four places. I don't feel a thing except the weird sensation of a chunk of metal attached to my numb head.

They set up an IV and gave me a double dose of dye then wheeled me away to MRI for a quick scan of the brain.

This became the best news of the day. The MRI showed that absolutely nothing happened in the brain since my last scan. There was no new tumors. The five tumors that existed were all the same size, and all still small. Woohoo! That's what I wanted to hear.

I sat around with the frame on my head for some time. Barb kindly ran and bought me a soft pretzel. It was interesting to eat a soft pretzel with a metal bar running in front of my mouth. I kind of had to drop it into the cage and catch it with my lower lip.

Barb, Susan and I finished a crossword puzzle, taking turns, and correcting each other's mistakes. We buy the easy crosswords. It makes us feel smart.

I wasn't called in for treatment until around noon. Because I had to have the frame attached to my skull for over seven hours yesterday I'm sorer than usual after this affair.

But the staff was very professional, and I believe they did a very thorough job with my treatment. They planned a separate session for each of the five tumors. All five of the treatments lasted for about 15 minutes. They adjusted the machine and its components several times during my treatment to fit the gameplan.

I felt bad that Barb and her Mom had to wait so long, the entire day, until this process was complete. It is by far the longest day of Gamma Knife I've had. I know if I had to wait around for 7-hours I'd probably be grouchy and restless.

But not Barb and Susan. They were all smiles, great positive energy, very supportive, I'm so lucky. I don't know how they do it. Thank you.

So the scan before treatment was good news. Besides being a long day, I believe the radiation treatment went well. And I ended up with a dozen wings from Mosby's in my lap on the way home some how.

I'll take this morning's beat-up feeling. I'll take it with a smile.

I'm Ready

I've been working pretty hard lately, trying to get the business rolling again after my stimulus check for graphic artists never showed up.

But today I think I'm going to kick-back, relax a little bit, and just get myself ready for tomorrow's Gamma Knife radiation treatment. I'm not making any promises though, I am knee-deep into a Web site right now and may find myself working on it again.

The Gamma Knife is quite an invention. It allows doctors to treat tumors in the brain in a very non-invasive way, compared to the alternative of traditional surgery. Dozens of tiny radiation beams target tumors in the brain, poisoning them with radiation, with minimal damage to surrounding healthy cells.

The whole procedure seems like something straight out of a science fiction novel.

I always forget that the radiation does not just instantly kill cancer cells. It poisons them and they slowly die over time. Since I've already had a couple of Gamma Knife treatments, this is where the doctors' attention to detail becomes so important.

The worst part of the treatment is having a metal frame literally screwed to your skull in four places. They do give me a pill or three to make me feel relaxed, then suddenly a group of doctors and nurses enter the room I'm waiting in and go right to it. They stick me with medicine to numb my head up then fit the metal frame over my head and screw it in.

Once the staff is happy with the frame's placement on my head I'm wheeled to MRI where they inject me with double the normal amount of dye and take a quick scan of my head. From that scan the doctor's and engineers plan out the treatment.

Once the treatment has been programmed into the computers I am taken into the large spooky room where the actual Gamma Knife resides.

The frame attached to my skull is attached to the table so my head cannot move even a millimeter. It's a strange sensation.

Everyone leaves the room and closes a big radiation proof door behind them (an unsettling thought). The table glides me back into the machine. I always expect to see Luke Skywalker or Han Solo at this point.

Once my frame locks into the machine everything is very quiet. You would expect a machine this large to make some kind of noise. Nothing. Complete silence.

Someone will inform me through a microphone that the treatment is about to start. Still no noise. Nothing.

The activity in my brain is very small. The largest tumor on the last scan was only two-millimeters. That has been the kind of things I have been dealing with so far. I've never had a tumor that was measured in centimeters. Typically the Gamma Knife treatment will go through a series of three or four different sets of approximately five-minute radiation periods. There is never a sound. It's all so strange.

Eventually I'll hear someone over the microphone say, "OK James, that's it. We'll be right in to get you." Nurses ease me off the table, quickly get me back into a treatment room and quickly remove the frame from my head, patching up the small holes left behind.

All in all, as crazy as it all sounds, it's not that bad. I've certainly endured much worse in this fight against this disease.

In all honesty, I could probably drive myself home just fine if it wasn't for all the drugs they pump into me before hand.

I can't thank Barb's Mom enough for volunteering to drive us in tomorrow morning for the treatment, which starts at 7 a.m. I'm happy about the early start, hopefully I'll still be half asleep when we get there.

I'll let everyone know how it goes. I'm confident it will go well. Results of the treatment, though, really won't be seen until about six-weeks afterwords when I'll have a follow-up scan.

Father's Day

What can I say about my Dad?

Never enough.

My Dad is my hero. He taught me everything. I don't idolize celebrities or athletes or musicians. I idolize my Dad.

My Dad is a very wise man. He taught me so many things just by watching him, just by witnessing how he led his life. He taught me about what is important in life - faith, family, friends. He never cared about material things.

He taught me about humility. He never bragged about accomplishments. He always shunned attention. My Dad never considered himself any better or any worse than anyone else on the planet. He taught me about equality.

He taught me about hard work, fairness, and kindness. My Dad is a great man.

We went to see my Dad yesterday. We had a good visit.

I would like to thank Alyssa and Charlie for going with Barb and I. And I'd like to thank Alyssa for forcing a smile when she saw my Dad, because I know she had to fight back a tear. Thanks Alyssa.

My Dad is generally healthy, but two small strokes have affected his memory. I'm sure with five of us in there all peppering him with questions and comments made it even a little tougher on him. He did repeat himself several times. But he did look good.

It's tough for him to be in rehab. It's noisey. He's surrounded by strangers. It's hard to relax and easy to get confused.

But no matter what, always and forever, I will look up to my Dad like no one else. Happy Father's Day Dad! You are my hero.

Scrapbook Saturday

Those high school photos can be embarassing.

I've been going through some old dusty boxes recently, of old dusty stuff. The old dusty stuff primarily pertained to old dusty me.

I found this great photo of me (above) from 1979. lol Of course it's just a gag, that I had shared on facebook as well when I used this as my profile picture yesterday.

I can only wish I had a cool afro like that!

Going through all these old pictures, and clippings, and this and that from school, from sports, from trips to experiences. I've gone through a couple boxes worth of stuff and begun the arduous process of translating these objects into a semi-organized fashion in scrapbooks.

The basketball category is done and safely in the book, acid-free sheets, nice book, the whole deal.

It took me 20-some years to take-on this task. For over 20-years I've been carrying about a history of my life smushed into four cardboard boxes. It's been over 20-years since I've even looked at this stuff.

And it will probably be another 20-years until I look at it again.

But by the time the scrapbook is done, I'll be carrying around a history of my life in one book, instead of four boxes.

Unexpected Call

I got a call the other day and it was a wonderful surprise. It was my Dad.

My Dad and I like the phone equally, which isn't much at all. Even when he was healthy it would be very peculiar to receive a call from Paul.

My mother had of course set the call up and handed him the phone in the nick of time. I do appreciate that. I haven't been able to get over and visit with my Dad as much as I would like to, with my own struggles.

We had a great conversation. He was right on every sentence, very lucid, and sounded like dear old Dad. I was both a little surprised and also very thrilled. We talked for a few minutes.

My Mom had taken my Dad on a "field trip" out of Spang Crest to home on Golf Road. I could tell he was thrilled to be home. He told me how he appreciated how much quieter it was.

Spang Crest can be noisey. There is always commotion from other residents and nurses. There are flashing lights and constant beeps that monitor some residents. I can appreciate how he would have a hard time truly relaxing there.

When I was in the hospital I experienced the exact same thing. People were constantly coming in and out of my room, nurses, janitors, pastors, guests, cafeteria workers, you name it - just about everyone but a doctor. They cost extra.

My hospital led me to the conclusion that "a hospital is no place for a sick person."

I am still hoping that my Dad can come home. I know that is where he wants to be.

But we do have to ensure that he is going to be safe in that environment. Ultimately it's a decision left to my Mom, since at home she will be his primary and sole source of care, 24-hours a day, seven days a week. I know it is a very difficult decision.

Meanwhile I'm trying to live life as normal as possible. I get up. I get ready. And I go to work just like everybody else. Maybe not just like everyone else. I do only have to walk over to the other half of the house. But that's what I did before cancer came to town too.

Soon I hope to have my web site rebuilt, and will hope to share it with everyone so I can get some feedback and criticisms. Everyone needs editing. As my journalism advisor at Ohio University once told me, "Gather all your information together and then throw 90-percent of it out. Only 10-percent is ever worth keeping."

I've always found that to be very wise and very true, and it extends to a lot of aspects of life.

One of Those Days

Have you ever had one of those days? Of course you have. We all do.

Yesterday was one of those days. There was nothing catastrophic or horrible that happened. It was just one of those days.

At 2:30 in the morning Freckles woke us up by jumping up on the bed, making his way between us and sauntering up to our heads snoozing comfortably on our pillows. Now Freckles never does this unless he perceives that there is a problem in the house.

I wasn't going to be able to go back to sleep until I knew what Freckle's problem was.

I tip toed down the upstairs hallway, trying not to disturb Barb. It didn't take long to discover Freckle's problem, hey had gotten sick at the top of the steps. He also got sick twice in the second bathroom, then he got sick in the kitchen, and even once more right in his bowl of food. This was a problem.

That's the order that I discovered things, but he probably enacted this in reverse of how I found it.

I checked out Freckles to see if he was feeling alright. He looked fine. He looked like good 'ol Freckles. He looked hungry.

I cleaned everything up. Freckles had woke Barb up too and she hadn't been able to go back to sleep. By the time I finished cleaning up Barb was coming downstairs. We started our day at 2:30 in the morning.

I fed Freckles.

He ate heartily.

It was cold for June, just in the 60s, it was an overcast day with steady, light rains throughout the entire day, with occassional downpours. It was also grocery day.

Our trip to the butcher, the baker, and the candlestick maker went incredibly smooth actually. We seem to have found the perfect time to go when the least amount of people are there.

But...it is the grocery store...even being a good trip, it's still one of my least favorite things to do. It still helps to make it one of those days.

Plus, on our way out to the car to leave for the grocery store, Barb noticed that the sewer pipe that leads from our house to the public line was backing up into the yard. I wasn't smiling.

As soon as I got back from the grocery store with Barb, I went across the street to the deli to see if they could recommend who to call. It's the deli. They know everything and everyone because everyone ends up in the deli on a regular basis.

They gave me a name. He said he'd be out in about 45-minutes.

The scenario was this, a vent towards the back of the yard was backing up showing that there was blockage somewhere between that spot and the connection to the public sewer.

The plumber saw the old cast iron sewer pipes in my yard, looked at a big old tree nearby, and predicted that the tree roots had grown into the pipes and created a jam.

He first tried to plunge the clog clear. He had the world's largest plunger. Sewer gushed back out of the vent pipe as he pulled the plunger out. It was raining. The clog didn't clear.

He ran a 75-foot electric snake into the pipe. The electric snake would clear the pipe and whatever is clogging things, even if it is tree roots, the plumber said. He told me if it is tree roots the snake will bring evidence of that back with it.

The snake slowly moved through the pipe. It kept raining. We stood there in rain and mud and sewage...just waiting.

He deduced that we had reached the public line by a change of sound through the pipes, a more hallow sound perhaps from entering a larger pipe.

So we pulled the snake back. The clog was now free and everything was flowing. We continued to stand there in the rain, as the snake moves very slowly through the pipe.

The plumber explained to me the scenario. If it is roots, which he suspected it was, the pipe would be clear and functional. But it would likely clog again, maybe in a month, maybe in a year.

"If it is roots," he said, "I will have evidence on the snake when it comes out.

I had decided to hang out in the rain from the beginning because I knew this was one of those jobs where I might be looking at $300 or $3,000. There was a chance we would have to dig up our yard here with heavy machinery.

I was soaking wet.

The snake came out and to the plumber's surprise it was completely clean. There wasn't a thing on it. It was actually shiny and kind of looked like new.

The plumber wanted one more try to make sure. We stood in the rain, steady light rain with occasional short downpours. He took the electric snake all the way out again and all the way back in.

The moment of truth...it was completely clean.

The pipe was now clear. There was no actual conclusion to what caused the blockage. We don't have to dig up our yard with heavy machinery. All ended well.

Since my neighbor had this exact same problem a couple weeks ago, the plumber did develop a theory that perhaps the borough did some work on the nearby public sewer line and maybe a sludge ball just found their ways into my and my neighbors pipes.

Interesting. But I'm just happy we have everything working again.

It's not the end of the world, it's just one of those days.

Trip on the Tracks

One redeeming quality of Shippensburg University was the mountains that surrounded the school. There really wasn't much else I could find good about it.

The mountains though were great. There was the dam and lake at Letterkenny Army Depot. I always remember a bunch of us running up there on the first warm day of Spring. We all jumped off the dam crest into water so frigid it sucked the air instantly out of our lungs.

I learned the water isn't the warmest in April.

There was also "Tumbling Run," an outstanding hike up the mountainside following a small stream that by the top of the mountain was a series of impressive waterfalls. Tumbling Run also featured a large rock outcropping that afforded expansive views of the valley.

There was also a lookout with a stone wall that had to be reached back a couple miles of dirt road. It offered panaromic views of the mountains and valleys, and the clear cutting of timber below.

On any given nice Spring day it wasn't hard to convince a few friends to join you for a trip to the mountains.

Once I invited a gentleman from Harrisburg, who I played basketball with, to join us on a trip to Tumbling Run. He went. But he was terrified. He had never really been out of the city his entire life. He certainly had never been in the woods. He was absolutely, positively, scared to death.

We eased his fears and urged him to hike onward, deeper and deeper into the forest. Suddenly two military jets flew right over our heads, just above the tree tops. The boom of the jets roaring past was deafening. I looked back to find my friend from Harrisburg sitting at the base of a tree, holding on to it for dear life.

I have to admit, I've never been to war but that flyover was giving me flashbacks.

The jets were undoubtedly from the army depot where we swam in the lake. After one swim with a roommate from North Jersey, my friend suddenly stopped his old, baby blue, junky car on railroad tracks and said, "I've got to show you something."

Huh?

Without saying a word he backed the car up and aimed the wheels towards the tracks. He seem to be trying to match the tires up to the tracks. He tried and failed. He tried and failed.

Suddenly he took his hands off the steering wheel and accelerated. The tires of the car were snug to the tracks and the junk of a car was riding the railroads. I didn't even know this was possible.

As the car rode along the tracks we drew the attention of a little league baseball game. Everyone stopped to watch this crazy, light blue car riding along the tracks.

We waved vigorously.

Some waved back.

In hindsight I do not think this track was active. But all I could keep thinking about was a train coming the other way down the tracks. Fortunately another cross-street was not far and my friend dumped the jalopy of the tracks and we continued home.

Still Fighting

I hate to say this, but Freckles sleeps around.

He sleeps downstairs. He sleeps upstairs. Eventually he sleeps on every piece of furniture in the house.

Typically he'll pick out a spot and regularly nap there for two or three days before he moves on to his next location. Sometimes he seems smart about it and picks out some of the most comfortable spots in the house. Sometimes he crams himself in a tiny space I can't even imagine what he's thinking.

But he gets around.

I don't get around too much. It wears me out. I like staying here in my "fortress of solitude," with my angel Barb always nearby, where I can control pace, pain, fatigue, stress, eating, exercise and medication, all those wonderful aspects of managing life on constant chemotherapy.

Chemotherapy amazes me. It is poison. It will destroy aspects of your body, wherever cells are reproducing rapidly. I told my oncologist recently that I do not have any pain that I think is directly attributable to cancer, and I don't have any major pain in general.

I have what I call "pain du jor," a random pain every day in a different part of the body. I like to theorize that it's caused by the chemo picking a fight with the cancer in a different area of the body every day. That's unlikely to be the reason. But it satisfies my cartoon-like perspective of medicine.

Chemo brings everything close to the surface, so to speak. I like to think that I've always been, literally, a pretty thick-skinned guy. I was always strong, tough, in good shape, could take pain (some would call that dumb). But chemo strips all the protective layers off and leaves you raw to the world.

My stomach has always been so strong it's ridiculous. I haven't had an upset stomach in at least 25-years before chemo. Now, well the 'ol tummy has been pretty upset two of the last three days.

It is the chemo. Cells reproduce faster along the digestive track than anywhere else in the body. Chemo can't differentiate between healthy cells and cancer cells. It just goes after all cells that are reproducing fast.

It is amazing what the human body can adapt to though. I naturally finding myself doing what I have to do to still make everyday as rewarding and special as the one before.

It is amazing what a certain perspective can bring to your life. Nothing is perfect. But everything is what you make of it.

New World Order

I never though much of these social networking sites which seem to be popping up with greater and greater frequency.

There is Twitter, MySpace, and FaceBook to name some of the most popular. I pretty much looked at these as things for the kids to play with back and forth with one another.

But I've noticed that more and more businesses are carving out profiles for themselves on these sites, using them to draw attention, communicate, market, increase traffic to their own sites, and better their results in search engines.

So I figured I should check things out.

Recently Barb and I both joined FaceBook. I've been surprised by the opportunities.

I've always said that someday everyone will be their own publisher. It's coming. It's here.

I fully recommend that everyone sign up for a site like FaceBook. Your daughter can update you on how her pregnancy is going with a report everyday. Your son in Iraq can report each day on how he is doing. You can connect with people who have similar interests. You can generate interest in the arts and crafts you're making and selling.

It is your own personal publishing center, write stories, share pictures or movies, just about anything.

And it has tremendous potential.

Right now we are not a Democracy. We are a Republic. We vote for representatives who then vote for us. But a true Democracy is getting closer. Just imagine, every day we could sign on to Facebook and vote on today's legislation. We won't need corrupt politicians to represent us anymore. We can represent ourselves in a true Democracy.

I've been poor throughout my life at maintaining relationships. When I left Philly I left all my friends behind and made little attempt to keep up with them. When I left the Lebanon Daily News I did the same. I did it again, and again, and again.

I was constantly moving forward without keeping the solid foundations I had already built in the past. Facebook has allowed me to try to rebuild some of those foundations.

I've been able to connect with the man who first hired me at the paper in Philadelphia, and the photographer I worked with there. I've been able to connect 20-plus years later with a girl I babysat when she was five. I've been able to reconnect with buddies I played basketball with, and old friends I went to college with too.

It's been special.

I didn't expect it to be such a valuable asset, such a nice tool. But then I was never the brightest crayon in the box.

Living Healthy

Did I tell you about the red wine mushroom sauce we had last night?

Oh my. Mmmmmmmmmmmmm. It was one of the best things, easily, ever made in this house. And I think we've made a few good things inside these walls.

It was well planned in advance. The "kids" come over Thursday night to join us for dinner (bless their hearts). We always make up a menu that circles around what we plan to serve on Thursday nights.

This Thursday we planned New York Strip steaks cooked on the grill. Because of my condition last summer the grill never came out from under its cover. This year it's spanking clean and has already seen some serious action.

I had my butcher cut four strip steaks for me special. Then yesterday I trimmed them down even more. I have a friend who caught me at a cookout once trimming fat from a steak. "No," she said. "What are you doing? The fat is the best part."

No thank you. I don't care much for chewing the fat, although some I know do.

I trimmed down the strip steaks until every bite would be nice and meaty.

The weather did not cooperate with my grilling plans. Oh I could have pulled it off but it would have been a mess. I decided to broil them. It worked well.

In making our menu plans I suggested a mushroom sauce full of fresh mushrooms that we could just pour all over the steaks. I asked Barb if she was up for the challenge.

Oh my goodness, she was up for the challenge and much, much more. She put a little sauce on each plate and then I plunked a New York Strip on top of the sauce. Then Barb covered the steaks with sauce and mushrooms.

Let me tell you one bite and I was in heaven. Unbelieveable. The steaks were so fresh and so tender, and the red wine mushroom sauce was out of this world.

I slept very well last night.

Oh yeah, we served it with hashbrowns and corn (the only vegetable Charlie will eat).

Slow Week

I keep looking around for something to do, responsibilities I may have, and I'm not coming up with much. It's a rare slow week for Barb and I, not even a grocery store trip to take care of.

Well enjoy it while it lasts they say, and we will.

It gives me time to keep trying to rebuild my web site, hang some more pictures around this old house, and take care of this and that.

Maybe I'll just watch the tomato plants grow.

Miss the Beach

After whole brain radiation I was warned to stay out of the sun, at the very least to wear a hat when I was out and about. My poor little brain had all the radiation it could handle, and further radiation from the sun could cause problems I was told.

Between that and the lack of general coordination that three-years worth of chemotherapy has caused me, I've been unable to visit one of my favorite places on Earth - the beach.

To me the beach is almost a spiritual journey. It's so massive. It reminds me of how little and insignificant I am. It's so powerful. It reminds me of the forces that are truly in charge.

I've always said that the ocean is like life itself. Don't turn your back on it or you may get knocked over.

I've always fit in well at the beach. It fits my style, my demeanor. I'm not into the rat race, all us little ants marching along the highways every day to and fro.

When I lived in Philadelphia a very respected editorial page editor wrote an editorial begging people to dress appropriately in the city. No baggy shorts, no t-shirts, and on no occasion did this man want to see any other man in the business district without a shirt.

At the beach, baggy shorts and a t-shirt are business attire.

On one of my early trips to the Outer Banks of North Carolina I stopped in at Tommy's Market to grab some milk and essentials. The cashier started asking me what I thought of the surf this week. He thought I was a local. I did feel like I was at home.

To me, places like Atlantic City aren't my kinds of beaches. It's a big city. Nature is squashed by us silly humans. I need the natural power of the beach to inspire me and make me feel at home. And there isn't much of that left.

And with my radiated head, and my chemo infused body, the beach isn't easy for me any more. I miss those annual pilgrimages. It was good for my soul.

Whew

I feel a little better today after talking to my oncologist and my neurosurgeon yesterday.

Basically the numbness that I felt both Saturday and Sunday are just par for the cancer course I'm on, and neither was overly worried about them.

Saturday mid-morning suddenly my right hand went kind of numb and then the right side of my face followed. Sunday mid-morning the left side of my neck went numb but that did not spread beyond that point. In both cases things cleared up in about 30-minutes.

The oncologist asked me a lot of questions. When he discovered that I was cutting back on my steroid dose, he told me to go back to what I was taking before - one .75 mg pill every morning. He told me that even with small lesions in the brain some wacky things can happen. But he assured me that with the small size of the lesions (none of 2 mm) and no signs of swelling or bleeding on the scans, that nothing serious would occur.

The neurologist had a nurse get back to me and he recommended that I get a complete cardio exam from my primary physician. He doesn't know myself or my case well enough yet. It's not that. I've gone down that road before.

As the oncologist said, with activity in the brain little quirky things can occur. Also after being on chemo for over three-years now (a remarkable feat in itself), something known as neuropathy can occur, which is a nervous system disorder caused by all the chemotherapy drugs.

So I'm feeling better just talking to the doctors about it. I'm going to be careful not to overextend myself too much until it's Gamma Knife treatment time in a couple weeks.

I did have a good laugh though yesterday.

We have a locally owned pharmacy that is great, and they even deliver. One of two older gentleman always delivers our drugs here. I've noticed that when I answer the door the transaction is quickly wrapped up and the delivery man is on his way. But when Barb answers the door, they always stay and talk Barb's ear off for five or ten minutes.

I can't blame them. I'd rather talk to Barb than me.

But interestingly enough, the delivery man asked Barb yesterday if that was her son who sometimes answers the door.

LOL LOL LOL

Checking Things Out

One of the things that is pretty special about my oncologist is the simple fact that he gave me his cell phone number. That may not seem like much. But almost all doctors I have interacted with prefer that patients do not call them. Most doctors want to see patients.

As my primary physician explained to me (and he is one who will take phone calls), "That's the way the business works. You can't charge someone unless they come into the office."

I consider having my oncologist's cell phone number a privilege, and I am careful not to abuse that privilege. In the many months that I have had his number I've used it only twice.

I am considering calling him this morning though.

Over the weekend I had two odd little incidents. Parts of my body went numb, and felt like they went to sleep. I've had this happend to me before in months previous. But I never had it happen on back to back days before, so I'm slightly concerned about it.

On Saturday, around mid-morning, suddenly my right hand went numb. I still had full movement, full control and coordination, it just went numb. A few minutes later the right side of my face went numb as well, including the right side of my mouth and the right side of my tongue. It all lasted no more than 30-minutes. It then went away and I was fine the rest of the day.

On Sunday I woke up with a stiff spot in the left side of my neck. It was no big deal. It just felt like I slept a little strange. Again around mid-morning suddenly the left side of my neck went numb. It lasted about 30 minutes again and then cleared and I was fine after that for the rest of the day.

This kind of thing has happened to me before several times since the beginning of the year. Typically it starts in the right or left hand, then goes to the right or left side of the face. It always goes away quickly. It's very random. It always drew my attention quite a bit but I had never made anything of it since it happened so rarely.

I've gotten use of all the weird things that can go on when you're actively using chemotherapy to attack the cancer within the body. There always seems to be little wars going on inside, here one day, over there the next day. During my last visit the doctor asked me if I had any pain. I told him I have the "pain du jour," a different pain in a different place every day. But it's not any pain with a direct relation to cancer growth.

I wouldn't be surprised at all to learn that my recent episodes of numbness are caused by the chemotherapy. The chemo can mess you up pretty good.

But I can't stop thinking about what the radiology-oncologist told me last week. "Any lesions in the brain, of any size, can cause things to go a little whacky upstairs."

So I think I'm going to try out the oncologist's cell-phone again this morning. I'm looking for a little peace of mind. And I'm looking for a Monday without any episodes of numbness. I'd rather not go for three-days in a row.

Little More Focus

My situation has become a little complex. I've gone through so much fighting of this cancer that I've reached a point where the doctors and nurses and radiologists, everyone at the medical facilities, has to think a bit beyond normal procedures.

For example, when a radiologist looks at my latest scan they will see both old tumors that have been treated, as well as the possibility of new ones. Some things that may look like tumors may just be leftover scar tissue from a successfully treated tumor. How do you tell the difference?

The most recent radiology report from my last MRI of the brain was very vague. The radiologist did have access to my prior scans but had no way of knowing which areas were already treated. So he just listed everything. This was little help.

I met with my neurosurgeon who, in my opinion, was unprepared for our meeting. I was hoping for clarification but received none. He only had access to my latest MRI, which is impossible to make a judgement on without reference to prior scans and prior records of treatments.

A doctor once told me that typically neurosurgeons are the primadonnas of the medical world. It's a generalization of course. But I've found that to be true.

The neursurgeon recommended arranging another Gamma Knife treatment for me, rationalizing that they'd figure out exactly what is going on before the procedure.

That wasn't good enough for me.

You really do have to be your own advocate. I've had some great doctors, and the assistance of some outstanding nurses, but in the end you really have to take it upon yourself to look after your own healthcare.

I called a doctor's assistant in the radiology-oncology department and arranged a special meeting with a doctor to clarify exactly what is going on in my head.

What goes on in my head, afterall, is a question folks have been trying to answer for years and years and years (smile).

I warned the nurse (a very helpful gal) that we will need at least my last two scans of the brain as well as my Gamma Knife treatment history. All should be ready so the doctor and I can review them together and discover together what is new, what is old, and what we should do from here.

It worked.

We meticulously went through my brain from tip to brain stem and compared current findings with past scans and treatments. We did discover that some of the tumors that the radiologist was calling new were actually old, and had been treated. The treated areas do not just disappear, they die slowly from the radiation poisoning and eventually convert into dead tissue.

At the end of our examination of my brain we concluded that three tumors were already existing from my scan in April, and none had changed in size. Only one was brand new since the April scan. Everything else had been previously treated.

All the tumors are very small. The largest is around two-millimeters.

We had purposely let the three found in April go, just so we could watch them to see just how fast they may expand. We were thrilled that they hadn't expanded at all.

Although medicine is an exacting science, there is certainly a lot to Mother Nature that cannot be easily predicted. Cancer is always a wild card.

Cancer can go into remission and just play dead for many months at times, and in some people. Then suddenly it can grow and spread wildly with no apparent rhyme or reason.

The decision Barb and I were faced with was whether to wait for another set period again to see how the tumors in the brain continue to act, or just go for another Gamma Knife radiation treatment and kill the four active tumors.

Barb and I were having a tough time deciding and the doctor could tell that we were struggling a bit in making this decision. Kindly he interjected his professional opinion. He felt that it was best just to set-up an appointment for the Gamma Knife and radiate the existing tumors while they were small and manageable. He told us that we could come back to the Gamma Knife over and over and over. It was no big deal, he said.

We agreed. I'll go for my fourth Gamma Knife this month, June 24th.

Still Going Amish

One thing that I have definitely noticed since I was diagnosed with cancer is my complete loss of appetite for packaged processed food or drink.

I used to drink my share of soda and sweetened iced tea. Quite frankly I would never drink water. Now water is all that I drink. Soda just turns my stomach sour.

Barb has become quite the bread baker, from loaves of crusty French bread to English Muffins, the taste as well as the smells that fill the house are just incredible. Widely distributed bread brands pumped out in volume, in factories, just all taste like cardboard to me now.

I used to think nothing of microwaving a couple of Hot Pockets, or heating up a Tony's frozen pizza in the oven. What was I thinking? If I tried to eat any of those types of things anymore I would just feel sick.

We don't mind cooking. We feel it's worth taking the time to treat ourselves well, and to live healthier. Plus it can be a very creative and fun endeavor. And what better reward than to sit down and taste the fruits of your labor?

Cooking from scratch with fresh ingredients is just plain sexy.

Heating up a Hot Pocket in the microwave is not.

For the past couple of weeks I've been telling Barb that I'm going to start making my own macaroni salad. The macaroni salad at the butcher is good, and so is the macaroni salad across the street at the deli. It's fresh made. But it has a little too much egg for my taste. And it's expensive, around two dollars for a little container.

So yesterday I made my first batch of macaroni salad. Barb and I agreed. It was very good.

For the cost of a small container at the butcher, the deli, or the grocery store I made a HUGE bowl full. Now my only problem is having too much.

It was easy to put together. Boil some elbow macaroni. Mix it with chopped hard boiled eggs, onion, celery and carrots. Then stir in a sauce made of mayonaisse, mustard and vinegar, and voila awesome macaroni salad.

It costs me little. It took little time. And I've got enough macaroni salad to appease a giant family picnic for both sides of the family.

Our lives become so busy and so crazy that we don't have time anymore for the simplest of things.

We're still going Amish here. We're still supporting local businesses as much as possible, and we're still trying to return to a village concept of society. I see no value in letting large companies run the bakeries out of every town, as is now done. What have we gained by this? Well a few became rich. And we're eating stuff that tastes like cardboard and is laced with chemicals and preservatives.

Now I just have to get the homemade Detroit-style potato salad recipe from my Mom.

For a good laugh, check out this comedian's take on Hot Pockets.

What a Difference a Day Makes

Yesterday things came together. I wish I didn't have to work so hard to make other people work. But, that's no different than the way things have been through my entire life.

I do not like being responsible for other people. I do not like making sure that people are doing their jobs. I do not like being the boss.

I was the boss once at a printing and design firm in Harrisburg. I'm pretty sure one of the main reasons I was made the boss was because I truly believed in working hard and doing good work.

We had a pressman there who was truly, always grumpy and unhappy. It's just the way he was. He complained. He argued. He was impossible to get along with. He was a big guy, both height and weight, and if he got a bad plate for his press he ripped the metal plate right off the cylinder while yelling and screaming.

One day a friend of mine who worked there also just got tired of the negativity. During one of his regular temper tantrums, my friend approached him and said "Look. I drug myself in here, drove through traffic, through the snow, what do you say we just try to make the best of it and shut up?"

The big pressman was shocked and silent. That's why my friend was my friend.

But being the boss? Well you just couldn't pay me enough. One former co-worker once told me that I'm like "a gun for hire." I was OK with that.

I had to work for more than three months to settle a dispute over $312 between my hospital's billing department and my health insurer. It felt like I was in the boss role and they were employees who quite frankly couldn't care less. But it's finally miraculously been settled. I didn't have any choice but to try to mediate and bring the parties to some resolution. If they couldn't agree (or care to even try) they were happy to just make it my problem.

Yesterday I also had to take charge of my medical treatments again. But this went much easier. Unfortunately they know me quite well at the cancer center.

Barb and I are faced with a decision whether to treat existing small tumors in the brain with radiation right away, or to wait for a set period of time and then checking the state of the brain then.

But we did not have the facts we needed to make the decision.

I called the radiology-oncology department expecting to ask to sit down with one of the doctors and spot by spot review my last two brain MRI's to try to gauge exactly what was going on. But before I could suggest that they suggested it first! So we have an appointment with a very knowledgeable doctor to do just that.

I've been told that the three existing tumors are all stable and none have grown. But only two tumors are noted on the radiologist's report. What happened to the third? Did it resolve without radiation?

I was also told that a few tiny spots have appeared. What is tiny? None of them were measured. Are they too small to measure? Too small to treat? How many is a few?

The radiologist's report from the MRI does mention one small "foci" in the pons section of the brain. The pons is the top of the brain stem in the center of the brain and is an area that is tough to treat and requires treatment. It shouldn't be waited on like other areas of the brain can be waited on.

I asked everyone I saw if this area in the pons was just residue from a previous treatment or was it actually a new growth area. No one knew.

If it is a new growth we will have to move towards the Gamma Knife radiation treatment in the weeks to come.

I'll make sure I get the answers tomorrow.

Working through health issues can be a giant challenge, and take a lot out of a person. But I really never expected that I would have to work so hard to ensure that the care I'm getting is the best. And I really never expected that I'd have to fight so much with my health insurer to live up to our contract.

But I guess it's all a part of human nature. In my own health care, whether I like it or not, I am the boss.

Headaches

One of the many unsuspecting side-effects of cancer treatments is frustration.

Chances are great that if you ever have to receive cancer treatment you will be dealing with HUGE entities, like hospitals and insurance companies. It's a heavy load to deal with, giants compared to your tiny bug-like self.

There are billing departments at the hospital and claims departments at the insurance company. It's all rather nameless and faceless so it's easy for them, they don't have to care.

When I've hired folks to work on my house, install a new furnace, rebuild a deck, repair the brick sidewalk, install central air, I've always hired people right here in Marietta. They have a name, a face, a reputation they're proud of and work hard to protect.

If the customer service representative at the insurance company gets frustrated with me she just "accidentally" hangs up. What does he or she care? Chances are great that I'll never talk to them again.

Fighting cancer is a tough fight. You can only imagine until you've been there. I hope none of you ever are there.

It's a tough enough fight without having to take on the big giants who are in charge of your care. I've tried everything, playing the good cop, playing the bad cop. I've been flattering and sweet, and I've been firm and decisive. Nothing really seems to break the endless cycle of sloppiness.

I always think to myself, "If I ran my business like this, I wouldn't have a business."

My insurance company has doubled my monthly premiums since I first signed on five short years ago. If I doubled my prices on my clients in that time I wouldn't have clients. The only reason the insurance company knows they can get away with it is because now I have a pre-existing condition and I can't take my business anywhere else.

The billing department couldn't get the money they expected out of my insurance company so they sent me the bill and made it my problem. Thanks. Again, if I passed the buck around on the billing I wouldn't have a business.

I work hard, take pride in my work, try to provide excellent service, while the big giants do whatever they want. Do I get a stimulus? a bailout? a rope with a reuben sandwich attached to it?

I could call my insurance company up three consecutive times on any given day - I could do it right now - and I would be told three completely different things. I guarantee it. It has happened to me time and time before.

If I get mad the csr's just hang up on me and let me call back and get somebody else. If I'm really nice they just figure I'm no one to worry about and just ignore me. I've come to the conclusion that the little interaction between us the better.

Once my insurance company mistakenly billed me $25 for ever CT or MRI scan, and they billed me that amount for 11-months. Then suddenly they realized they were screwing up and started billing me $150 per scan. On top of that, a csr told me that she was going to try to collect the balance from their incorrect billings throughout the year.

I can see me now, "Hello Joe. How are you? Hey I've been billing you wrong for that newsletter all year. I'm sorry about that. But I'm going to have to send you a bill to make-up for my mistake. Yeah, I'm afraid it was a pretty big mistake. Double the amount? Oh no, it's much more than that, more like six times the amount."

We're all obviously not playing by the same rules.

Can I Introduce You Doctors to One Another?

Barb and I went to the neurosurgeon today. We felt that this was pretty much going to be a simple appointment.

Afterall the oncologist called us from an airport on Friday to tell us that he has reviewed by MRI report and everything looked terrific. The three small lesions in the brain that we were watching were all unchanged, completely unchanged in shape or scope.

Based on this scan the oncologist told us we basically had one of two decisions, we could let everything go for another set time and then do another MRI of the brain, or we could go straight to Gamma Knife treatment to treat with radiation what was visible right now.

Before deciding we wanted the neurologist's interpretation of the MRI.

He hadn't even looked at it until he came into the room to see us. He was literally sitting down to look at it for the first time.

"Well there is a new one in the Pons (area of the brain)," he said.

"How do you know that's not a previously treated spot," I asked.

"Well that's a good question," he responded. "Wait, you shouldn't treat lesions in the pons."

"But I've already had two lesions treated in the Pons," I quickly replied. "The radiologist-oncologist treated them successfully but wanted it done right away."

"Really?" my neurosurgeon asked.

Yes really.

What do I have to do to bring these doctors together and get them on the same page? One says one thing, one says another, it's lunacy. It's like trying to get Muslims and Jews to get together and find a way to get along. It just doesn't seem possible.

So now I have to take charge of my own health destiny again, with no medical knowledge. I have to inspire nurses and doctors to do a little more, provide me with more information, interview all doctors involved and come up with decisions that hopefully can prove in my best interest.

I never though my journalism education and career would end up benefiting me so much in my own medical circumstance.

Oh, and I got my fourth erroneous bill for $321 from the hospital this morning. The hospital and my health insurer are arguing over who is going to pay this amount. They both agree that I am not responsible for this bill. But since they can't come to any agreement on which company should pick up this bill they keep putting the burden back onto me. Thanks. Swell. You guys are great. You ever feel like a bug that's just about to get stepped on?