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.