It Was Fun While It Lasted

This morning I officially ended my "drug holiday," as the doctor called it. I decided to go back on full doses of Nexavar, the chemo drug, after a couple of weeks of enjoying half doses.

We do not meet the surgeon at the University of Pennsylvania until May 22nd, and that's a bit far off. At least it seemed too far off for me to continue my "drug holiday." I'm fairly certain that leading up to the out-patient procedure they'll take me completely off Nexavar, so I'll get another break from the chemo then.

All in all I want to be aggressive in my approach to this deadly disease, at least for as much as I can take it. Beat my body to a pulp with chemo and then take a little break and then do it again. I will always remain confident that I can start hearing "no evidence of disease" enough times that the doctor just throws his arms up and says, "I don't know how you did it. But I don't even know why we're still treating this anymore. Why don't we just stop the chemo, stop the treatments?"

I do think that I need to start thinking about long-term chemo existence though. Unlike other forms of cancer, where chemo treatments involve set time frames and durations, with kidney cancer you're on chemo period. You never come off of it. It never ends.

The specialist in Philly told us that he has patients that have been on Nexavar for five or six-years, since the first clinical trials on the drug.

Five or six-years? Well I can top that!

I'm thinking of a gameplan that might involve something like three-weeks on full dosage and then one-week on half dosage, or something like that. After talking to the specialist in Philly I realized that such a gameplan is a wise idea, and there are many options for the amount of Nexavar I take, balancing out quality of life and aggressiveness against the cancer.

But the "drug holiday" was fun while it lasted. My weight had shot up a good seven-pounds, almost over night. The digestive system really calmed down in a big way. But I still did experience some fatique.

I just have to figure out the best routines - the best ways to live with constant chemo.

Staying Busy

The best counter attack I've found to the chemo fatique is just staying active. With all we have on our schedules, staying active should not be difficult, although keeping up might be.

Today we have a meeting with our financial advisors. I'll politely pretend that I understand what they're saying as they throw out the financial lingo. We'll communicate our goals for the year to them, and send them out to put us in the big bag of investments they throw most of their clients in.

Not a big deal meeting, but something to deal with.

This afternoon I'm going to stop-in with our family doctor just for a general "wellness" check-in. The deal with my local doc was that we'd let the oncologists and radiologists try to kill me with chemotherapy and radiation, while he tries to keep me as well as possible through it all.

Another no big deal meeting, but another appointment for the day.

Tomorrow a potential client is coming in to discuss costs and methods for us to build him a web site. I purposely position myself in a certain price range, which reflects the quality level we deliver. I don't know if his business budget will accomodate working with us or not. But, we'll see.

I've found through the years that I'm much happier doing quality work for a higher price, than just chasing as much business as possible for the lowest possible price. I can do one job really well for a couple thousand dollars, or I can hack out a job for a couple hundred dollars. But the latter option means I have to work twice as many jobs to earn the same amount.

Marietta Days will be here before we know it (May 17th) and we're scattering to empty all of our boxes in the attic and the basement so we can decide to keep, throw out, or sell at Marietta Days.

Since, apparently, the folks that built this house 200-years ago were four-feet tall, working in the basement for me is a stiff back waiting to happen. But I'll get down there and drag something out so I can work on it without having to crouch over, occasionally banging my head on floor joists and pipes.

We've got plenty of yardwork to do, like everyone else I guess. And we've got plenty of work to continue on this old house. The new decks have been quite a blessing, and we've been getting out on them quite a bit. But we still have a ton of painting to do here and we really need to start picking some of that work off.

There's some business marketing to be done as I'm trying to finish off a little mailer.

I still have a ton of print making and framing to do.

I want to buy a huge canvas that Barb and I can turn into an abstract painting in the backyard on a nice day.

We're looking into a water softener since it's been confirmed to us that Marietta has hard, hard water. Jeesh the water ate its way through our kitchen faucet.

That's only half of my "to-do" list. So there should be plenty to keep me active and help fight the fatique.

Yesterday Freckles added to our daily workload when he suddenly disappeared. We looked everywhere, for probably just shy of an hour. Then Barb finally spotted him sleeping in the spare bedroom, somehow crawling back in a corner behind the daybed and an end table. It was somewhere he's never been seen, nor found before.

It was a quick game of hide-and-seek.

A Few Monday Updates

I've blogged quite a bit about my ongoing battle with Aetna, my health insurer. Basically they sold me a prescription benefit that stated "maximum out-of-pocket expense of $2,500" and then they changed it after I had joined the plan to "maximum benefit of $2,500."

With prescription costs being what they are (my chemo drug has a list price of just over $7,000 a month) this has been quite a slip-up on Aetna's part.

I'm the kind of guy who always thinks that things can be worked out. That philosophy may be a little naive. But it's me. I like that approach and I believe in it. I'm not much for starting big wars.

I've reached a point with Aetna where my only choice is to start a big war. And I don't think I want that. I could hire an attorney, spend thousands upon thousands of dollars, and I'm confident I would win the case. I'm very confident.

If my back was against a wall, obviously I'd have no choice. But the pharmaceutical companies themselves have supplied me with the drugs I need under patient-assistance programs. I don't think financial responsibility is falling where it should. But it's either accept the patient-assistance being offered to me or start a big war.

The more I've experienced the health care system, pharmaceutical companies, and health insurance, the more I've come to realize that our health care system is a gigantic mess. It's a gigantic game where health administrators, drug providers, and insurers all play with one another to see who can rake in the biggest bucks. From what I can tell, they're all doing pretty well - at our expense.

I won't even pretend that I have all the answers on how to fix it. But I can say, from someone who's had more experience with healthcare this past year than probably anyone you'll ever know, it needs fixed. It's seriously broken.

So Long Sunshine
After a BEAUTIFUL week last week, this week we're kicking off to steady rain and cold, and it appears that it will last throughout the week.

But April showers bring May flowers, or so the saying goes. I'm sure it will bring us some weeds too. So we'll continue the yardwork after this week of cold, rainy weather. I'm determined to continue to build ourselves a little oasis in the backyard.

I was quite surprised over the weekend to see the first blades of grass pop up in our big barren area that had become overcome with moss. It's inconsistent, but it looks good in the areas that the grass is growing. I'm ready with more fertilizer and more grass seed. I'm planning on a full, lush lawn through pure perserverance.

Marietta Days
Our annual Spring time town yard sale is coming up May 17th, and Barb and Alyssa are getting ready. I've been regularly trying to clean-up and push junk out of the house for the past few months. "Marietta Days," as it's called, will be the perfect opportunity to get rid of it. And whatever doesn't go is going to the junk man.

I expect them to do well. Alyssa is quite the little sales lady and visual merchandiser. And Barb is as friendly and approachable as anyone on the planet. If I stand out there people just seem to be a little frightened and keep moving.

Regardless, as long as we have some nice weather May 17th, the house should end up a lot lighter.

What? Me Worry?

"Don't worry about your health. It will go away."
- George Carlin

A neighbor of ours was working in his yard the other day and he called me over to talk.

"How 'ya doin'?" he asked.

"Oh, I'm still fighting it," I said with a smile.

"How do you do it?" he continued. "I mean, man, I'd be worried to death that this pain is more cancer, that that pain is more cancer. I mean I get a little sore somewhere and I'm a nervous wreck."

Well I'm not without worries. But worries never get me anywhere. Oh they screw up my concentration and maybe twist my stomach around. But nothing ever comes from worry. So I do my best to just shake worry to the side and wake-up and continue every day.

I explained to my neighbor that it's a whacky world and unexpected things happen every day. Us humans like to think that we're in control of everything. But that's, of course, hardly the case.

"There are one-year-olds fighting cancer. There are 19-year-olds getting killed in Iraq. Someone will drive away from home today and never come back. You can't worry about it, just get up and make the most of every day," I told my neighbor.

"Well that's quite a positive outlook," he said, although the expression on his face didn't seem very positive, or very relieved.

He asked me if I was still working. I told him we had started the business again, although under a somewhat limited working schedule. He asked for some more of my business cards and I provided him with a dozen or so.

"I'll drum up some business for you," he said in parting.

The next day a business equipment company from the next town over called to inquire about having a web site built for his business.

Politico

Everyone who knows me knows that I like a good debate.

I once worked with a communist and atheist, and we debated for hours and hours on end. People would think we despised each other the way we went at it. But nothing could be further from the truth. We held a lot of respect for one another and just liked to butt heads. Afterall, debating lets you explore issues, and focus your own thoughts and beliefs.

And I love a good political debate. But I have behaved as Clinton and Obama littered tv, print and radio the past six-weeks in Pennsylvania.

I kept my mouth shut . . . well, until now . . . LOL.

One thing that has been great to see is the energy, interest and enthusiasm that surrounds this election. In the past there would be a lot of non-chalance, little interest, and a general feeling of "Who cares? It doesn't matter."

Not this time, voters of all ages have really formed strong opinions and strongly supported certain candidates, or at least strongly opposed certain candidates. That energy, that interest, that passion about public policy, is at least a good step in the right direction.

After that? Well . . .

I do like how Americans balance power amongst the parties by switching power from Republicans to Democrats now and again. It's been eight-years of Republican control of the White House, and now it certainly appears as if the public is going to give it back to the Democrats again. And typically after that Congress will be flopped to contrast the party in the Oval Office.

I like it. At least we get a balancing effect.

I would like if we just got rid of parties. I really think party politics causes much more harm than good. We have how many billion people in this country and we can narrow down all opinion to two simple interest groups? Doesn't make sense to me.

I believe in good ideas. I don't care who thought of them. But many of our representatives tow party lines to gain favor, or return favors, and care little about whether an idea is good or bad for their constituents.

What really amazed me was how many Pennsylvania Republicans changed their voter registration to Democrat just for the primary election. Did they feel that strongly for or against Clinton or Obama? Was it an issue of gender or race?

I don't know. I didn't feel that compelled. I'm an independent. I don't get to vote in the primary. And that's how I'm keeping it. I don't take part in party politics.

For me, I'll be glad to see the switch from Republican to Democrat in the White House (don't worry GOP ground, you'll be back again soon). I am happy to see a woman or an African-American on the verge of the Presidency. I think it's long overdue.

Beyond that, I can't imagine it really matters. Clinton and Obama are both lawyers, both Washington insiders, both more of the same.

My prediction?

McCain is seen as more of the same. He hasn't a chance.

Clinton is too goofy. She won't be seen by Americans as stoic enough to fill this role.

So it's Obama by a good margin over McCain. But don't expect the government or your world to change.

Spring to Life

It's great to see the sun rise brightly across Marietta, with everything blooming and springing to life in our backyard.

Well...everything but the grass.

We've cleaned up the yard in every way. When we bought this place, the backyard was a wreck. It was just completely ignored for some number of years.

I think my Mom said, "Ugh. Just plow it all under and start from scratch."

My buddy Painter said, "I'd just chop those trees down and pave the whole thing. Hey, build a go-kart track."

I do think it's good that we do not take all advice.

Sure it would have been great to start over. But we don't have that kind of equipment, energy, time or money.

But we've worked it over into quite the nice little woodland, a shady little oasis with wild grasses, butterfly bushes, lots of perennial flowers, hostas, ferns, English ivy, and now a banana tree . . . that's right a banana tree.

But I can't grow grass.

Since we've moved in the grass has slowly been creeping away from the house.

I'm determined to stop it's progression.

We fertilized the whole lawn area. We spread seed generously and well. We watered the grass seed twice daily and didn't dare lay a foot on it.

And nothing.

It's been just over a week. I was kind of hoping to see some little grass blades by now.

I think I have a "brown" thumb, everything I touch turns brown.

OK. The decision has been made. Barb's in charge.

Have to Stop Meeting Like This

I didn't sleep Sunday night. Barb was restless. I took three elbows to the head. I was awoken once shivering after Barb had pilfered the blankets and rolled herself into a burrito. And I woke up one other time right before Barb was able to completely force me off the bed.

I think it's kind of funny. But it left me as quite the zombie Monday morning.

Barb's family buried their grandmother Monday morning. It was a touching tribute to a strong woman who lived to the magnificant age of 91.

Marian was a fixture of the family whom Barb's family was all very close to. She was the matriarch, and yesterday was not just a celebration of her life and her salvation, but it was a passing of the torch to the next generations.

Although I did not have the opportunity to know Barb's "Granny" as well as they, of course, all did. But, zombie or not, I was going to support Barb - who has done the world for me these past years.

I just hope I didn't put my suit on backwards.

The service honoring Marian was very touching. And it was very musical. I was surprised by the volume and quality of singing throughout the service. There are some incredible voices throughout Barb's family, everyone, really incredible.

In songs I could pick out voices and just kept thinking, "Wow! That's great!"

The only voices I didn't really pick out was Bill, Barb's Dad, and mine. Hmmmm, we might have jobs as the family's "roadies."

We'll miss you Marian! But we celebrate your salvation, your ultimate reward, and we smile with all the fond memories that you've left to fill our heads.

Update from Visit with Oncologist

Thursday we did meet with our local oncologist to report on our meeting with the specialist at the University of Pennsylvania.

It was really rather uneventful. But, when you've had as much experience with the health care system as I've had, you know that doctor's offices do not always communicate, strong interactions between offices cannot be relied upon. You HAVE to take charge.

And true to form, the specialist in Philly did not report to my local oncologist, or any other doctor. So we became the communicators.

We could have told him anything.

We chose to tell him the truth of course.

He didn't seem thrilled that I cut my chemotherapy daily dose in half without his blessing. I understand. It appears to minimize his significance. But I did it with the blessing of the specialist. And we certainly didn't mean to minimize his importance in the grand scheme of things. Actually we count on him very much.

Our experience with working with the offices in Philadelphia are kind of like a reflection of Philadelphia itself - chaotic, unfriendly, intimidating and confusing. In contrast, Lancaster may not be quite as advanced in its tools and methods, but they are far more organized, courteous and easy to work with. My hat's off to the doctors and nurses at Lancaster General Hospital's Cancer Center. They have tough things to deal with and do it with grace, respect and kindness.

Basically our local oncologist signed on with the current gameplan. Now it's just a matter of executing.

We did learn that no one locally is doing the ablation procedure, which we hope to pursue. Ablation, apparently, uses a CT scan to guide a big, long needle directly into a tumor, and then freezes it or burns it with radio waves. The word through the cancer community is that this procedure is working very well, killing tumors without causing so much damage to surrounding healthy cells.

So we'll be heading back to West Philly, just outside Center City, to meet with a surgeon to consult on the procedure. Then we'll be back in Philly for the out-patient procedure. And I'm guessing this will include one more trip to Philly for a follow-up exam.

I'm going to continue half doses of chemo until a week or two before the ablation procedure. I'll have to come off the chemo completely then. The chemo can increase risk of bleeding and it certainly slows healing. So . . .

But after all of that, hoping all goes well, I'll be back on full chemo doses and continue to be aggressive in attacking this thing.

We did have to wait about an hour to see the doctor Thursday. But when you find out he needed to give a lung cancer diagnosis, with significant spreading, to a family of five with many, many questions . . . well . . . we understand.

A Better Place

I don't know if I know of a better place to be than Marietta this week - temperatures in the high 70s, brilliant and abundant sunshine, the Earth coming alive, the trees flowering, the tulips and hyacinths opening.

Sure, I guess I could be in Paris, or in the Bahamas, or at some exotic locale.

But I'd rather be right here in Marietta, surrounded by what I know. There's no place like home.

And after all, all of my stuff is here.

It's been a week of losses though. Through the brilliant Spring sunshine and the plants coming alive, there has also been some darkness and dispair.

A true matriarch of her family, Barb's "Granny" passed away this week at the wonderful age of 91. She's seen so much, and lived through so much change this past century. She was a fixture of the family and will sorely be missed.

Also, a kidney cancer "warrior" (as he called himself), passed away this week. He was a southern gentleman from Augusta, Georgia, an avid outdoorsman. He inspired many others with cancer, including myself. Cancer patients worldwide will no longer read the inspiration of his daily blogs.

But as I look at these losses this week, amongst the miracles of birth that Spring brings to my backyard of Marietta, I realize there is one place that is a far better place to be.

And "Granny" and my friend the "warrior" have reached that place.

My faith, and their faiths, tell me that they've both reached the greatest place of all. Although I can feel sad for the personal losses this brings to me, I can feel happiness for their ultimate salvation.

We will comfort one another for what we will miss. But we will celebrate what they have gained.

In Dedication To Our Granny

In all our hearts and all our minds,
they could never be anyone quite as fine.
With a loving heart and loving hand,
the memories will always be there to stand.

The wonderful times we did all share,
constantly in our lives and always there.
She gave her love in many ways,
in our hearts she always stays.

When you lose someone you love so much,
you just want to reach out and touch.
She was always there growing up,
someone to lean on and gain so much.

There had always been alot to learn,
and now that the tables take a turn.
We know that she is in a much better place,
away from the crazy human race.

She is where she belongs now,
in a safe haven on a heavenly cloud.
God has lifted his arms and reached out to her,
to take her to the promised land.

She is within the safety of his arms,
and now with Gramps too,
where she truly belongs is her home,
that'a dear and true.

As we will miss her here on earth,
the life she lived has all been worth,
we may shed tears, that she may see,
the reflection of life that has been left here with us,
will always be in hearts she can trust.

Incognito

For some reason, and I truly do not understand why, I seem to be a memorable character. It's something I've dealt with my entire life.

Now a lot of people would see this as a blessing and not a curse. But I'm a shy, modest guy, and it's always made me feel a bit uneasy being so well-recognized.

Plus I hate to be rude. With people coming up to me on a regular basis with, "Hey Jim! How are 'ya?" I feel rude when I don't remember their names. And it happens too often.

I explained this to my Uncle Rhea once and he said, "You know what your problem is? You're lazy. You have to work harder to remember people."

I always figured he was probably right.

But no matter how hard I try, people still come up to me and appear to know me almost better than I know myself.

Part of it, I'm sure, is the strong legacy my parents have made in Myerstown.

When I first started driving I had the yellow Chevy Impala station wagon out. I gave it a little extra gas from a stop sign and a rear spinning wheel caused a hub cap to fly off and roll up into a neighboring yard. I quickly pulled the car over and slinked up the yard to retrieve the hub cap.

To my horror, an older gentleman was relaxing on his porch, in a rocking chair. I quickly apologized to him, and thoroughly embarassed, I picked up my hub cap and turned to return to the car.

Suddenly I heard, "Does your Dad know you drive like that?"

(GULP!)

It always felt that I couldn't hiccup in Myerstown without everyone somehow knowing about it.

Yesterday we returned from the hardware store with our new kitchen faucet, ready to dig into the work of installing it. It was a beautiful day and almost everyone in the neighborhood was outdoors. I really didn't notice. I was on a kitchen faucet mission.

Barb alerted me to our neighbor trying to get my attention. I've been a bit invisible in Marietta this past year. And I certainly have not spread the word locally about my cancer. But somehow everyone seems to know. They know at the deli, at the bank, at the borough office, and throughout town. It bewilders me.

But I was glad to talk to Bob. He owns the pub behind our house. It's a very historic place, has survived some great floods through the past 100-years, and is the oldest pub in Lancaster County, operated by the same family since the 1930s. It's the only pub I've ever heard of that is not open on Saturdays. It's a very family-oriented, neighborhood kind of place.

Bob said to me, "You know this cancer stuff is out of control. Everytime I'm sore somewhere I think to myself, well that maybe it's cancer. I can only imagine what goes through your mind all the time."

I explained to him my philosophy. There are kids born with cancer. There are kids getting killed in Iraq. You can leave in the car one day and never come back. There are no guarantees. Just get out and live life.

He said, well that's a very positive approach. But I didn't seem to really convince him.

Then he told me he was making a donation to a Relay for Life event in my name.

I probably haven't talked to Bob in 9-months - how touching.

I noticed that a small line of people had ensembled to talk to me as well.

Huh? How am I such a memorable character?

Is it because I'm a giant goofball?

We ended by giving our other neighbor, recently the borough president, a quick tour of our renovation work in the backyard. He admired the new stone paver patio, trying not to draw attention to the big maduro cigar in his hand.

Boy, do I miss a good cigar on a special occasion - like a Hoya de Monterrey Excalibur Maduro. (shaking head)

Maybe I should learn to accept this being memorable thing. But it's just not in my nature.

Some people dream of being famous, being a celebrity. I just want to be one of the gang, because that's all I am, or all I'll ever be.

Notes:
- This morning we meet with our local oncologist to review our meeting in Philly with the kidney cancer specialist. I'll post an update on that meeting tomorrow.
- A fellow kidney cancer patient, and writer, from Augusta, Georgia lost his fight to this disease this week. He inspired many with his daily blog and will greatly be missed by many.

No More Spa for Freckles

Our kitchen sink started dripping a few weeks ago. Beyond that crevices and cracks were starting to erode the faucet itself.

Hard water plus cheap faucet equals potential big mess.

It was time for a new faucet.

So, although my to-do list was gigantic yesterday, and I've got plenty of activity cascading forward till today, I only put one thing on my list today - replace kitchen faucet.

I've replaced it once before. I don't think there is a more uncomfortable place in the house you can work. On your back, the edge of the cabinet digging into your back, you have to access up behind the sink, navigating the couple inch space with tools.

We started this morning early. First we wanted to rip out the old one and get ourselves familiar with the current set-up. That took a couple of hours, not too bad considering one fussy shut-off valve and some extra-tight bolts.

Then it was off to the hardware store. I knew walking in that Barb had the better eye to pick out this fixture. It didn't take her long, a dark rubbed bronze faucet with separate spray and a built-in soap dispenser. That's right a built-in soap dispenser.

It looks good. I like it.

We got everything back home and spent almost another two-hours installing the new faucet. All in all, it really went a whole lot better than I thought. But we're not putting anything back under the sink for 24-hours until I feel good about it. lol

As we were cleaning up Freckles showed up downstairs after a nap with a big "MEOW." I looked at him and said, "Sorry buddy, your personal water works is closed."

To both of our amazement Freckles thought the old, drippy faucet was the best thing in the world. More and more I would catch him jumping up in the sink and letting the water drip on him from the leaky faucet. You'd go to pet him and there would be a wet streak down his back.

He knows the punishment for getting caught in the sink is even more severe than the punishment for getting caught on the counter. So he knew what he was risking for his joy of dripping water.

But with the new faucet, the kitchen sink spa is REALLY closed for Freckles. Hear that Freckles? Freckles?

LET'S GO! Ummm, Wait a Second

I'm sitting here with a bowl of M&Ms. That's right a bowl.

We found the biggest, largest, most gigantic bag of M&Ms at the store this morning, bigger than any bag of M&Ms I've ever seen. It was the heaviest thing in our shopping cart. Really, it was.

We got two bags.

And now I'm trying to see how many I can eat before 3 p.m. when the eating has to stop for two-hours in preparation for the next dose of chemotherapy.

I woke up ready to go this morning. I had a pretty big to-do list for the day and wanted to see how many things I could check-off that list.

I jumped into the shower early and off we went.

We were at the butcher shop early. We had the place to ourselves. For some reason I do all the ordering at the butcher shop. Barb says so. There are some things I just do not question. Like, why I'm not allowed in the laundry room. I don't know. And I don't care, it's just the way it is and it works just fine.

So I zip through the orders, supervising the cutting of two smoked pork chops, overseeing the trimming of a few filets, examining a big slice of ham. We get to the whole chicken for a roast and Barb steps up to the counter, firmly points, and says, "We'll take that one."

Barb makes the roaster. (She cooks the heck out of it! mmmmm)

We're back in the F.J. Cruiser and heading off to the grocery store. I'm starting to feel a little fatiqued, a little mentally tired. I wanted to get so much done today. But it's starting to feel like one of those "chemo-fatique" days.

Well, maybe I'll get a second wind, shake it off. It's happened before.

The grocery store is, well, the grocery store. It's like a job we don't like. But we tell each other we're going to enjoy the grocery store like there's no place better in the entire world, and off we go.

The store was empty. Got everything we need. No wait at checkout.

No complaints.

The best scene was simply Barb coming down the aisle with four boxes of frozen fruit bars in her arms.

On the way home I could tell the fatique was not going away. It's more of a mental fatique, than a physical one. And it's absolutely caused by the Nexavar - the chemo.

The eating and weight gain is both continuing well. But maybe I'll still have those chemo-fatique days to deal with.

I unloaded the groceries, covered the counters with stuff, and pulled the F.J. around back. I tried to help put some groceries away. But, Barb was in full-stride. She could tell I was tired. The grocery store has knocked the wind out of me before.

"I don't mind doing this," she said. "Go relax."

The La-Z-Boy made the final decision, as it often does.

I needed a nap.

I had so much on my to-do list though. I really want to get some of this stuff done. I still need to exercise. I need to work on this mailer for the business. I have to continue organizing the basement stuff. It's trash night. We picked up special "yard waste" stickers at the borough office this morning.

I really need to scrape and paint a window for the front of the house. I need to get the plates on the "granny mobile." (We're thinking about her every moment of every day.) And we want to run out to the sign shop in Mt. Joy to talk ideas on a little sign for out front of our shop.

I took a nap.

Now, back to that list . . .

Back to Work

With the stomach calm, with the dizziness under control, with the fatique not as heavy, it's time to get back to work, and back to some of the routines, like exercise, that I've recently abandoned due to the heavy effects of the chemo.

Now on half doses for a few days, I think I might be able to get a thing or two done.

And we have a laundry list of things that need done. We've always got something going in this place. We've always got more to get done then we can possibly get done on any given day. But, that's my fault. I've always been that way.

I woke at 4:30 a.m. to the thermometer reading of 40-degrees. It's only going to work up into the 50s today. But I think that might be warm enough for me to pull a rake through the yard. It looks like the fertilizer is working as planned, all the moss in the yard is dying.

I have to finish a little mailer for the business and hand that over to Barb for distribution. We're just letting some local companies know that we're here, and working again.

We already pulled all the electric window candles out this morning. We can't make the candles work and be able to open the windows at the same time. So we decided that we would display window candles only in the winter time. Spring time is now here and it will soon be time for some open windows.

"Marietta Days" is coming up in May. Barb and Alyssa are planning on setting up a stand. Basically a major stretch of Market Street closes down and everyone puts their junk out to sell.

Barb's Dad and I understand the "true" meaning of Marietta Days though - FOOD! The deli will make it's annual sausage sandwiches again, smothered in sauce, green peppers, and onions. (drool) Well that's a healthy treat! lol

There will be great french fries all over town. If we're lucky the crab cake sandwiches will be back. Man, those were so good.

But we have to continue Spring Cleaning to prepare for Marietta Days. There's a wealth of boxes left in the basement and the attic. And I've been in full-blown clean-up and clean-out mode. (Though I don't seem to get very far.) It's like a plate of Chinese food, the more you eat the more that seems to be there.

I just learned that some computer parts and software is due to arrive today. Knowing myself like I do, I won't be satisfied to end the day without these new arrivals being completely installed and working well.

It's back to work.

And it's back to exercising. Between the upset tummy and the dizziness exercise became something I just couldn't do for a couple of weeks. That's over now, so it's time to get back to it. And that's where I'm going right now.

Happy Monday everyone!

Alyssa & Charlie Are Back In Town....

After an extensive trip to Florida at Disney World, Alyssa and Charlie have returned. They had a wonderful time and the weather for the most part was pretty decent for them, from what I have been told, the weather was only bad three of the nine days that they had spent there.

It sounds like everytime a person goes to visit Florida, there is always something new to see. The picture we received by e-mail from the Spaceship, Greetings From The Future, was comical, Charlie looked normal, but Alyssa looked she had a few too many drinks.(actually it was just one of the goofy pictures, although it was very cute) We heard quite a bit about there adventures and Epcot sounded like a very interesting place. Like alot of things that Charlie has never tried before, Alyssa actually got him into rollercoasters while they were there. They bought me a very nice souvenior mug, which of course I thanked them for.

I am glad to have them back safe and sound, I missed them coming here on there usual Thursday visit. We love them both very much and enjoy there company.

(Smile)

It didn't take me long to cut my chemo dosage in half, as soon as I had permission from the doc.

Actually I had to take my 400 milligrams worth of pills on the way home from Philadelphia Tuesday and started the 200 milligram lower dose right then, right away.

I figured it would take me a couple weeks to feel any effect from the move. But I seem to be feeling better already.

Afterall, I have been on chemo at full dosage, every day, for the past year. That's a long time to be on chemo. It really wears you down. I deserved a break.

Yesterday my digestive system was not only calm but strong. Fatique wasn't an issue at all. I felt like frolicking through the tulips and hyacinths in the backyard. So I did.

(Smile)

By late yesterday afternoon our thermometer read 78-degrees. It was the best day yet this Spring weather wise.

Two-days ago Barb and I made our first foray into the yard this Spring. Moss is taking over our yard. We raked it clean and spread fertilizer. We'll follow-up with new grass seed next week.

It was nice to get out, play in the dirt. But it was a little damp and overcast throughout the day.

Yesterday the sun beamed, the birds sang. I was frolicking through the tulips and hyacinths. The jacket was too warm. It was the first day this year that I thought short sleeves were enough.

I grabbed a rake and a shovel and cleaned out a pretty large planting bed, around the dogwood to the smaller back deck, and down through the shade garden full of hostas and ferns and English ivy.

With the shovel I spread out the piles of dirt excavated to make way for the new pavers. Some loose rocks from the paver project was interspersed with the dirt, so I took a light rake through the bed again.

It felt great. I was sweaty. I was dirty.

I grabbed the big broom and swept off the new pavers.

I need to make a point of taking time to get out in the yard every nice day and do a little something.

(Smile)

I decided to step on the scale again yesterday. The scale has not become part of my daily rituals. As the weight drops I get tired of the reminders.

As the wheel on the scale spun and settle into position I called out, "Barb. Can you come here?"

"Is everything OK?" she answered.

I did not answer back. I just wanted her to pop in the room, look at the scale and confirm what I was seeing.

She did.

We looked at each other.

The scale said 179-pounds. That's eight-pounds gained in the past two-weeks. Wow.

And that weigh-in was before I had stuffed chicken breasts and mashed potatoes for lunch, followed by fresh hot turkey sandwiches and mashed potatoes for dinner.

I think I've found a secret weapon against chemo weight loss - mashed potatoes and M&Ms.

(Smile)

Protection

When I was around eight-years-old I started playing midget football. After a week or so of running through tires and hitting blocking sleds, the coach called us all together at the end of a practice for a little talk.

Mr. Hernley explained to us that all of us had to get a jock strap and a cup by the next practice or we wouldn't be allowed to practice.

A what? I'm eight. I've never heard of these things before.

No one else seemed to question Mr. Hernley's demand, although everyone was kind of looking around at one another.

Mr. Hernley was short and rotund, usually in a flannel shirt. He kind of looked like an out-of-shape Wolfman Jack. He drove an old, beat-up, blue stand-up truck. He was mean and tough, but some how still loveable at the same time.

"And trust me," Mr. Hernley growled, "I'm going to be checking so make sure you take care of it."

Well that evening I went home after practice. I hated all the equipment we had to wear in football, and none of it ever fit. If you ran too fast your helmet bobbled around on your head, the girdle around your waist filled with pads sagged, and your shoulder pads hopped forward and backwards with each stride. Today's kids? Air filled helmets for the perfect fit - we must have remembered how lame it was and made it better.

Sitting there at dinner table that night, likely still half dressed in my football duds, I remembered Mr. Hernley about halfway through dinner.

"Mr. Hernley said we have to have a jock strap and a cup by the next practice or we can't play."

My Dad almost spit out his food and started laughing.

I gazed at him a bit complexed.

My Mom honed in, "What is it? Paul! What is it?"

My Dad nodded, still laughing, and said "I'll tell you after dinner."

"But what is it? What is a jock strap and cup??" my Mom insisted.

They went back and forth. My Dad held out and they discussed it after dinner. I can remember my Mom saying something like, "Why? At their age? They have to get this?"

Of course I found out what it was all about. And I figured out how to strap the strange contraption on - just another part of my uniform that didn't fit.

But I'm glad I had it. Mr. Hernley would kick, punch, tap, and elbow all of us in the groin from that point on just to make sure we were all wearing 'em.

After midget football I never wore one again. And the only reason I needed one in midget football was so I was protected when Mr. Hernley kicked, punched, tapped and elbowed.

Day Three of Doctors' Week

Because of my dizziness I did postpone my eye doctor appointment today. It cuts down on "Doctors' Week" a little for me - which is a plus for now. But I'm still looking forward to getting in to see these guys as they hatch a plan to try to correct my fourth-nerve palsy (a birth condition that makes my right eye lose track of my left eye's movement).

But I'll be calling my oncologist's office today to schedule an appointment and check on availability of an appetite drug that's been working well for me.

The trip to Philadelphia went well yesterday. I can't thank Barb's Dad enough for driving us to the University of Pennsylvania. When you're talking about Penn you're talking about downtown Philly, in the shadows of the skyscrapers. There's a special attitude necessary for sucessful urban driving - and Bill's got it. And we had a little help from a computerized woman named "Garmin" and her constant directional advice from satellite.

And I'm very thankful for my support team of Barb and my Mom joining us for the trip. It's good to have some numbers there to quiz the doctor and keep everything in line, not to mention the company amid waiting in this lobby, and this room, and that room.

The meeting went well.

Basically the kidney cancer specialist thinks this is an excellent time to get in and go after the one tumor in my body, in the upper lobe of my left lung. And this doctor knows a surgeon who can do it in a minimally invasive way. He calls it "ablation." A needle is inserted into the center of the tumor and then is either frozen or blown away with direct radiation. It's an out-patient procedure. The doctor spoke that he's had great results with his associate's success with this procedure.

We all agreed that it's a good idea. We're going after it.

The only down side is having to make a few trips to Philadelphia to make it happen. But if that's what we have to do, we will do it. First we're also going to investigate some surgeons locally to see if they are also performing this relatively new technique.

As far as the chemo goes, the kidney cancer specialist believes that the Nexavar I've been taking for the past year is definitely working. So, he asked, "Why switch now?"

We all agreed.

The only logical rationale for a change in chemo at this time would be the toxicity of side-effects. And that is somewhat of a concern for me. But, the specialist did give me his blessing to cut my current dosage of Nexavar, or even take three-months completely away from it. He said it's really all a balance of how aggressive I want to be, or what level of quality of life I'd prefer.

I will have to stop taking the chemo before, and then after, any surgical procedure is done. The chemo reduces the body's ability to heal.

So my plan for now is to reduce my Nexavar daily dosage by half. I'd like to see if that can help me build some strength back, and lower the effects of the tough side-effects.

That reduced dosage should lead me into stopping the chemo completely before a procedure and then after. We'll decide on an appropriate time to stay off the chemo and then I'll likely be aggressive and get right back on full dosage.

It was a day where we expected to face some big decisions. But really the kidney cancer specialist agreed with perspectives we were all going into the meeting with, giving us great confidence on how we're going to proceed after a year of treatments. It really does lay the groundwork for the next year of fighting.

We all got back tired and exhausted from the time spent in the car. My butt hurt.

I found out late yesterday that my nephew Ellis has been praying for me. He ends his prayer each night with "make sure Uncle Jim stays healthy forever and ever, AMEN!"

Awwwwww. Where would I be without Ellis?

Where would I be without all of you?

Thanks. Thanks so much.

Day Two of Doctors' Week

I can't thank Barb's Dad Bill enough for driving us down to Philly today. We've all been there, the Schuylkill Expressway, it's never fun for us country folk.

I lived in Philadelphia for a few years. If there is an open spot or three along the curb where cars park, it's now an open driving lane. Around here a car on fire makes the nightly news. Down there a car on fire along the expressway or I-95 is a daily event.

We're heading to the University of Pennsylvania, right near Franklin Field and the Palestra, places I've visited many times growing up. There's nothing like a basketball game at the Palestra.

It's overcast. But at least it's not raining. Our appointment is mid-afternoon. So I'm hoping we can manage to miss rush hour. That is if we don't have to wait in the waiting room for three-hours like last visit (What are the chances that could happen twice in a row?).

I went to my local general practice doctor yesterday about the dizziness. He was quite certain that I've got a viral thing in the inner ear and a build-up of fluid there is causing my imbalance. The only other possibility, he said, was that I may have a "rock" in my inner ear. A "rock" he defined as a calcium deposit that broke free and is bouncing around inside my head. Ahem, spare me the jokes. LOL

I did find out that I can take four-times the motion sickness medication I have been taking. And this morning, so far, it does seem improved.

My little test drive to the local doctor yesterday showed me that I am still too dizzy to drive. So in light of that revelation I postponed Wednesday's appointment with the eye doctor until a later date.

The postponement of the eye doctor appointment cuts down on doctors' week. That certainly doesn't upset me.

Again, thanks Bill for getting us down the pike today to see this specialist. And thanks to my Mom for making the trip with us.

Week of Doctors

With the sun working hard to clear the horizon, Monday is upon us, and an important week of doctor's visits is upon me.

Tomorrow we head down to see the kidney cancer specialist at the University of Pennsylvania. He's going to make a recommendation on whether to stay with the Nexavar chemo drug, or to switch to Sutent or Torisel. Sutent is a pill form that you take at home, very similar to Nexavar. Torisel is an IV based chemo administered at the hospital once a week.

It's a pretty big decision.

On one hand, my body is tired of the Nexavar. A switch of drugs may present itself differently to my body - maybe better, but also maybe worse. I am also familiar with the Nexavar side-effects after a year now. A new drug would bring a new learning curve, learning how to best manage the side-effects.

Torisel is typically reserved for patients in very advanced stages. Although my cancer is considered advanced, it has remained passive without significant growth and without spread. So I don't think Torisel would be the choice. But I can't be sure. My oncologist seems to think that it's time to attack, so that may mean Torisel.

If we do go with Torisel, that means a bit of a lifestyle change with weekly visits to the hospital, and that wouldn't be a positive lifestyle change. I learned through my surgery, the hospital is a terrible place for sick people. But that's really another story entirely.

The specialist in Philadelphia also plans to weigh-in his opinion on going after the tumor in the upper lobe of my left lung. It's the only tumor I have. It's shrunk and grown and shrunk and grown. But it just won't disappear.

I think we're looking for the least invasive way to get in there and kill this area of my lung. There is a new technique reportedly being used where a needle or tube is inserted right into the middle of the tumor, and then radiation is delivered directly. The thought is that the specialist in Philadelphia will have more access to the latest techniques, and where they're being done.

So, in general, it's been a year since this cancer spread to my brain. Since, two tumors have turned into one tumor, and there is no immediate signs of further spreading or aggressiveness. So is it time to really go after this thing? I'll find out Tuesday.

Wednesday is off to the eye doctors who are going to look at my fourth-nerve palsy in my right eye, and if it can be corrected with Botox injections. That's another story too.

And although I think my dizziness has improved over the weekend, it still persists. That might take me into my primary doctor for a look-see today yet or Thursday.

Nothing like a week of doctors to welcome Spring-like weather! Hopefully I'll get next week off.

Where Did This Come From?

Thursday I felt absolutely wonderful. It's such a rare treat that I try to enjoy it as much as possible.

Friday morning I was feeling great too. Barb grabbed me a small roast beef hoagie at the deli. I finished it all in a blink and felt like I had room for a little more.

All of a sudden though I felt a strange sense of dizziness and light-headedness. I figured that maybe I had some kind of quick blood pressure drop. So I just sat down and waited for it to clear.

But it didn't. It stuck with me throughout the day.

Now I don't feel dizzy all the time. If I'm still everything seems mostly normal. But when I move around, so does everything else. It's not severe. But it certainly stopped me from doing much of anything physical yesterday. Although I still did manage to cook dinner.

I woke up this morning and it feels a little bit better, but the dizziness is still certainly there.

It's a bit of a mystery. The Nexavar is known for sneaking through the blood-brain barrier and carrying on upstairs. I did just have a clean MRI of the brain so I really shouldn't have any concerns of new activity there.

I did a little quick research this morning on the Mayo Clinic's web site and it appears that dizziness is most often caused by something off in the ear canals, eyes, or sensory nerves throughout the body. I guess anyone of those three rationals could fit the bill for me.

I never know exactly what is going to come on, or when it is going to occur. This is the first time for dizziness - just something else to talk to the doctor about on Tuesday. I'm going to hunker down today, stay somewhat still, and try to ride it out. I hope it passes fast.

He Ain't Heavy . . . But He's Heavier

Everywhere I go, everything I see, newspapers, radio, television, magazines, the internet, everywhere there are advertisements for weight loss.

I understand. We're a well-fed society who tends to idolize the vanity of celebrities.

But it's a little frustrating. All I've done is eat, eat, eat, and my weight has trickled down, down, down.

Take yesterday, I started the day off with two thick slices of cranberry bread and a banana. Then for brunch I put down a nice serving of shepherd's pie from the deli across the street. Then for lunch it was the chicken croquette's with mashed potatoes and green beans, again for the deli. And for dinner it was haddock with parmesan buttered noodles and lima beans.

I'd say I'm eating pretty well. And that's pretty much how I've been eating, for weeks and weeks and weeks.

But my weight still trickled down until it seemed to bottom out at 170-pounds a couple weeks ago.

Monday I came home from the store with a big bag of peanut M&M's. I'm talking about the BIG bag here. From Monday to Wednesday evening I polished off that bag. I was addicted to the M&M's - so accessible, so delicious. Sometimes I'll do things that defy my own common sense. But I figure, if I want to get fat, I should eat some fattening things.

Yesterday, looking in the mirror, I thought I noticed the slightest glimpse of a belly. Just a tiny little curve that made my mid-section look like it wasn't sunk in upon itself.

I quickly jumped on the scale. I had gained five-pounds!

I looked twice. Did I read that scale wrong? Nope. It was solidly on 175-pounds. The scale hasn't moved in the upward direction for me in I don't know how long.

We'll see what happens from here. I'm going to do my part and keep eating. Barb wants to run out today and get me more M&M's. LOL

Hooray! Not Much to Say!

I love boring.

Boring gives me the opportunity to make things not boring, get into something, start something up.

It could be some artwork, maybe mess around with the camera, maybe write a little, maybe work up a little business mailer. It could be a little project in the house, or outside the house. It could be anything.

I like boring days.

Plus boring typically means that I'm feeling alright and not active in maintaining one of the million and one side effects from the chemo, or off to a doctor's office to get stuck with needles or slid into machines.

Boring is good.

We finally replaced our bird feeder, and filled it full with bird food and hung it in it's designated location Tuesday. It's supposed to be squirrel-proof, and pretty slyly closes up when an animal of too much weight jumps on it.

The old feeder took some damage from the two squirrels that call our backyard home. A couple times they swung on that thing until they made it fall to the ground, and then it was feast time, followed by clean-up feeding from the local morning doves.

When we first moved into this house, the backyard was a disaster area - completely a disaster area. The whole yard was covered with a couple of years of debris. I painstakingly worked the yard over until it at least looked habitable. We did some planting, spread some mulch, and the neighborhood noticed the improvements.

Last summer is just a blur to me. All I can say is thanks to Barb for keeping up with it.

But now moving into Spring I'm planning on restoring my masculinity by mowing my own lawn. Mowing the lawn is a tradition stepped deep in male culture. I believe it was just as important for the first cavemen to keep a tidy lawn to rank well in the male elements of local societies.

And my lawn is overcome with moss. Moss is everywhere, streaking down the yard, killing grass in its wake.

I have to address this. I bought some stuff. I hope it works.

Our yard is kind of like a little forest, and there is lots of shade. The shade and moisture does cause a lot of the algae and mildew and moss to form. But I also have some problems with water run-off that isn't helping.

The idea is to kill the green stuff, buy a pressure washer and blast some away, and rake all the dead stuff to the trash pile. Then I might look into a rain barrel to collect water rather than dumping it all into one area of the yard. The water from the rain barrel then can be used to water plants. And finally I need to seed and baby the grass back into deep roots and a thick lawn.

Wish me luck. I don't exactly have a green thumb.

I was at my cousin's house in Bethlehem once and his wife had all these great indoor plants in one large grouping. I asked her what her secret was. Just as she opened her mouth to answer my cousin entered the room and said, "When plants die we just buy more." LOL

Getting Angry Seems to Help

Well after getting mad at my body, and getting mad at what chemo does to my body, I seemed to overcome all the digestive woes of the past week. I seem to be heading back to "normal."

It continues to amaze me how much power the mind can have. I just get it in my head that something the chemo is doing to me is unacceptable and I attack it in logical ways, and eventually I kick it and move on.

At least that seems to be how it can work. Of course it could be coincidence that the chemo is at it's height of punishing me with side effects when I happen to get mad and it starts to improve again.

Who knows? Now I just wait for what side effect chemo has in store for me next.

I was opening a can of pizza sauce on Monday as part of fixing up some homemade French bread pizzas. As I fumbled with the fancy electric can opener, helplessly trying to get the can in just the right position to make it work, it made me think back to my old can opener.

Alyssa hated my can opener. She made it quite clear.

It was just a normal, manual can opener. It had big hand grips and served me well. I could open a can in a breeze.

Alyssa hated it. She fumbled with it, cursed, butchered the can, and sometimes ended up just clubbing the can with the can opener until I gave in and opened the can for her.

One day I reached into the drawer to pull out the can opener and it was in pieces. So was I. What happened? My can opener was dead. It looked a little suspicious. I suspected that this may have been a homicide.

Later I questioned Alyssa but she was quite certain that there was no funny business related to the death of my can opener. Possibly the can opener had taken the final plunge in Alyssa's normal operation of it, that could include some pounding against the counter after it irked her enough.

I gave in and bought a fancy, electric can opener. Alyssa was thrilled. She ripped off tops of cans like nothing. She just placed the can in there and "whhiiirrrrr" the top was right off.

Me? I can't operate the thing at all. I just can't seem to get the can in the position it's supposed to be. I fumbled with it, cursed, butchered the can, and sometimes ended up just clubbing the can with the can opener until I gave in and asked Alyssa to open the can for me.

Alyssa got married and moved into her own house.

We don't buy much in cans anymore.

Off and Running

We've been putting off a needed hardware store trip. The garbage men have smashed our garbage cans beyond recognition and we need to get some new one's for them to pick on. Not to mention a dozen other this and thats, stuff we need around the house.

It never stops. The excitement of homeownership.

And we're off through more rain this morning, but 55-degree temperatures, which we'll most certainly welcome. Probably going to be a trip of some length because of the odd assortment of things we'll be looking for.

We do sorely need to get our bird feeder back up. Being so close to the river we draw quite an assortment of birds. For three-years now we believe we hear a woodpecker in our backyard, but we've yet to spot the elusive little guy.

We're going to look to add a humming bird feeder as well.

Last summer I was standing out on the back porch, shooting the breeze with the neighbors, and suddenly a hummingbird stopped about a foot away from my face, right in front of me. The hummingbird gave me a lookover for a second and just as quickly it was gone. It was absolutely amazing. I was stunned.

And considering I'm up to running out to take care of these odds and ends is sign enough that my digestive woes have been getting gradually better. The chemo is always around somewhere in the body, reaking havoc in the body, but it never stays in one place too terribly long. I think this has been just another trip in the overall chemo journey. But I better stop before I jinx myself.