Test Results......

Just to let everyone know that unfortunately Jim's tests results could have been better. There are more lesions in the brain and newer ones in his lungs, the older ones he had there are at bay. His other body organs are doing well, however, Jim was admitted to Lancaster General Hospital yesterday due to a fracture that occured in his left calf due to the cancer and is undergoing care for a day or two.

As An Update

Jim had a MRI on Wednesday, an upcoming CT on Monday and a doctors appointment on Tuesday. We don't expect any derogatory news, but everyone please say a prayer for him.

Only Two Good Days This Week

In the past few months, the doctor started talking to Barb and I about thinking more of "quality of life" rather than "quantity of life."

He caught me a little by surprise.

My attitude has been that cancer will have to take me fighting, every step, the entire way. "I'm not giving in."

He assured me that he wasn't giving up either.

But I did think about what he said. I put myself in his shoes. If I had a kidney cancer patient who was punished on chemo for nearly four-years with little overall benefit would I of good conscience continue to beat this poor man with harsh drugs without at least some relief?

I understood what he was saying.

And then he suggested we just try a drug called Interferon. It has been the harshest, hardest, meanest, most terrible drug I've ever experienced. When Barb originally looked up all the side-effects from the drug and page of info should have just read," This drug will pound you into the ground and then jump up and down on your head.

This choice had certainly not followed the "quality of life not quantity of life" credo.

It caused me to miss Thanksgiving with my family and a visit with Lynn who was up from Florida. I had called the doctor and discussed getting away from the drug. He suggested we try it only once aweek instead of three times per week. This sounded very possible. So I tried that schedule for the past two-weeks. Now I'm in some of the worst shape I've ever been.

My eyes have gone pretty whacky. My digestion is way off. My body mass has completely shrunken down to skin and bone and cost me 40-pounds. The Interferon causes me odd and quite random pains. And more...

Barb and I have discussed plans. We're going to cancel the Interferon treatments. There's just nothing that has to do with "quality of life" there. We want to get my self in a healthier standing again. And then we want to have a good discussion with the doctor when we're scheduled to meet in about 2-weeks.

We hope the doctor will order scans of the brain, upper spine, chest, abdomen, and pelvis. That is quite a few. We're got some catching up to do.

We also hope that the doc will agree with out idea to try a new kidney cancer drug that was released very recently.

Sorry I've been out of sorts - and out of touch!

Wednesday After....

Since Jim didn't get the opportunity to blog yesterday. I wanted to let you know that he is very tired from his injections and that he needs the time to rest. It seems as though the 48 hours to follow afterward, are the most to contend with.

It's Monday. Let's Get it On.

I'm trying not to let these billing issues cause me too much stress. Lord knows I have enough of that already. But, you know, if you expect to pay $25 for breakfast and when the bill comes it says $400 you are going to have some questions.

One thing I've always wanted to do, just for fun, was bill my insurance company for my time. Who knows? They're so confused and all over the place they just may pay it! lol

I also have thought that it would be fun to include with by invoice one of those legal agreements in six-point type that no one can read stating all of my policies. You know like, if you don't like a first draft I have a right to charge you 10-times the original estimate. Each correction will cost a complete cheese cake. Things like that.

Oh...the joy of working with corporate America.

When I call my insurance company it's always a bit of a crap shoot. Sometimes I'll get someone who is very nice, and genuinely wants to help resolve the issue. Most of the time though it's someone who hates their job, doesn't want to be there, and wishes I would stop interrupting the time they're to spend with their friends on Facebook.

One of my techniques is to keep calling back until I get someone polite and helpful. It's not easy. It takes some effort and time. But eventually it works.

One of the techniques they have often used on me is to ask me to hold and then "mistakenly" hang-up.

I've learned to always get their name, employee number, birth date, favorite pizza topping, everything and anything I can get to help prevent this. This can be challenging since English is no the native language of mos of these folks.

The other day I spoke with Jewieey (Julie) who turned out to be most kind and helpful.

Dear Lord, please help me find Jewieey again.

Not Surprised

I was worried that I started celebrating and dancing a little too early.

I was right.

When the director of oncology/radiation at the hospital tells you that the billing for my radiation treatment is wrong - well you have a high degree of confidence that it is.

But I should know better by now. I was just being hopeful. Afterall a different bill that I settled last week had only been around for six-months.

Sure the radiation director believes that I was billed incorrectly. Sure I was billed completely differently for virtually the same treatment earlier this year. But this only gets me to the next level - the evil level.

The evil level brings in the muscle, the posturing, the politics. It involves different people from LGH billing and many, many, many calls to to my health insurer and the hospital. It involves new languages like "I'll send your EOB to LGH along with your adjusted claim for review."

I really shouldn't have expected anything different than it has been in the past - a huge gigantic mess. It's the last thing I need. But I'll hold off to Monday and knock me head against the wall again.

Yeehaw!

Well we received three bills from the hospital the day after Christmas. None of the bills seemed right. One of the bills has been around since July and I already thought it was resolved twice.

Fun, fun, fun, unfortunately I'm quite used to this kind of thing. So I was hardly shocked.

I decided I would attack these current bills slowly, thoughtfully and methodically, and one at a time.

First I attacked the bill that I was already told was taken care of twice. I really threw myself between the hospital's billing department and the insurance company's claims department. I held their hands and walked them through all issues. I held on the phone for hours as one party called the other party. By the end of the day my insurance company agreed that they processed the claim incorrectly and was sending out a check to the hospital to settle the claim.

Now I can't be too confident. I've been told to rip-up bills before only to have them sent to me again some weeks later. But as much as I was devoted to completely following these bills through I have a high degree of confidence that this bill is finally resolved.

The difference? I was being charged $400 and now I'm being charged my expected co-pay of $25.

I was proud. I did a little dance.

It's not easy being a little sick guy stepping between two-corporate giants.

Yesterday I devoted myself to resolving another bill. I again was expecting a $25 co-pay and ended up again with a bill for $400. For this one I needed Barb's research assistance to pull a bill from early 2009.

The older bill was for $25, my expected co-pay, for a very similar treatment that I was now getting charged $400. It just didn't add up.

I called the radiation department, got one of the key members of the staff on the phone, and asked her why I would be billed so differently for virtually the same treatment.

"Why is this billing so different from the previous one? What is the expected standard?"

I could feel, over the phone, the light bulb going off over her head. She got it. She understood. She asked for time to discuss this with her boss.

Soon she called me back and the bill I was sent was all wrong. It should have been billed as one complete treatment of radiation therapy. But instead it was charged as 16 separate treatments, resulting in my $400 bill rather than my expected $25 co-pay.

I'm still waiting to hear back from radiation on how they specifically plan to resolve this one. This could have far reaching implications. When did LGH and radiation start billing people incorretly like this, and how many people were affected, or even knew about it? Some people just pay the bill. Not everyone is a stubborn hard-head like me.

Again I felt confident that this is addressed. But I'll never know for sure before I get a corrected billing or statement. Still, it was enough success that I had to break out the dancing again. That always draws some odd looks from both Barb and Freckles.

So, now I'm down to just one bill to address. I've been saving this one for last because it's the most complex. I will have to spend some time studying it and figure out what mistakes were made where. When I'm ready. I'll make the calls. I'm not on anybody's time frame.

If I hadn't taken the time to question these bills, and fight for was accurate and right, I'd owe $800 so far, instead of the $50 that I actually owe.

It's tough enough to get up every day and fight this cancer. It's terrible that I also have to fight with the hospital and my insurer almost everyday too. Aren't they supposed to be the companies looking out for me?

Send Me an Honest Man or Woman

When Governor Rendell first sought office he promised that if he was elected he would get rid of the motorcycle helmet law. Probably not a great idea. But it was very popular and likely made a large impact on the election and his victory.

He's a bit of a gambler.

Now this week the Governor held the Pennsylvania Congress hostage announcing that "table games" had to be made legal or he would have to lay off as many as 1,000 employees. This morning the new law just awaits his signature.

Added to the law is the right for PA casinos to extend credit to customers. Now gamblers don't have to stop when they run out of money. They can just pull out their credit cards.

A couple years ago casinos in Pennslvania were created when certain locales were allowed to bring-in slot machines. Now we're adding black jack and poker and 40-some other games to that list. And all of this is supposed to balance the state's next budget.

Sounds like quite a gamble.

When slot machines were legalized Rendell had promised that the profits would be used for property tax relief. I don't remember any relief. Actually ours went up.

Every morning recently there have been stories about charges, filed by the Attorney General, against Senators and Representatives, for using state funds and resources to aid their election campaigns. It's like the wild west out there. Who can we trust?

When you're gambling that black jack will balance our budget, I'm afrait the only gamble is with our future.

What's Going On

I'm not on the board of directors or anything. But I'm at the local cancer center so often that I tend to get a pretty good feel for what is going on.

I've been visiting there so regularly across the past four-years I have more experiences in the place than some nurses. I've seen some come and I've seen some go.

Tuesday, as soon as I walked through the door to the treatment room the receptionist said to me, "I'll take care of you Jim."

It's been horribly cold up here. My Interferon treatment forced me out into it yesterday, with the help of Barb and her Mom.

The cancer center has been going through some major renovations. Barb, her Mom, and I have been a bit skeptical of these renovations as they began to be revealed through December. The number one thing we were worried about was the amount of room, or the lack of room, they've left patients in the new waiting rooms.

The waiting areas had always gotten quite full. We've seen the old waiting areas overflow with patients and they were twice the size of this new one.

I questioned one of the nurses I've gotten to know fairly well about the changes. She explained to me that the hospital was taking over the cancer center from a group of doctors that had run it previously. That I did not know. But I could see the results of the switch in my last two visits for treatment.

One thing that was different was I was given an arm band right away. I wasn't a person anymore. I was a bar code. I wasn't real fond of the thought of that.

Also, now, all the nurses had to dress in the exact same scrubs - uniforms. I know they weren't exactly thrilled with this change. A nurse told me that she felt the new system was less personal, more mechanical. That didn't sound good either.

I only needed an injection yesterday. It literally takes about 30-seconds. In the old set-up people who needed injections would come right in, sit right at the end of the nurses' command center, get there treatment and quickly be on there way.

Yesterday, in the new treatment area, they led me to a corner, closed me in behind curtains, and took my blood pressure, temperature, and a blood sample. Then the wait began.

I try very hard to never make people wait. I had a boss once that said, "If you make people wait, it's like saying your time is more important than theirs. Like you are more important than they are." This boss was constantly, habitually late. So he must have thought that this pertained to everyone but him. But I believed in this philosophy completely.

In the early stages of my cancer I once had to wait 3-hours, and another time had to wait and amazing 4-hours for the doctor to show up. I was hoping there was at least a good reason, like emergency surgery, so I asked. Nope, he told me it was the result of bad scheduling.

Grrrr.

I don't put up with that anymore. It's not right to make cancer patients, many in worse conditions that I, to wait, curled up in a ball, in pain, for a 30-second injection.

Well, 15-minutes went by. I felt like I was being punished stuck in a corner, hidden by curtains and an IV-machine. Then 30-minutes went by. I stood up to stretch my legs although my real motivation was to get attention. It worked. The nurse told me it would just be a couple more minutes.

Another 30-minutes went by and I was officially getting grouchy. I was considering getting up and leaving.

Just then the medicine came out and the nurse gave me my injection and I was on my way.

I could tell by their faces that Barb and her Mom didn't exactly enjoy this wait either. I couldn't believe how full the waiting room was. There were two people sitting on the floor (ON THE FLOOR?!?!?!?). You mean to tell me that in the whole hospital there isn't two extra chairs for these two? As I helped Barb and her Mom collect their coats I coaxed the two patients on the floor into their chairs.

There was yet another patient leaning against a wall, with no chairs in sight.

This was unacceptable.

I can't stop thinking about it. If there is anyway I can possibly change things for the better for people I care about (fellow cancer patients) I want to reach out and try.

Woohoo! One down, Two to Go!

I woke up in a very business-like mood yesterday. I had to.

I had three bills from the hospital that were all wrong and could cost me thousands of dollars.

Unfortunately this is not an odd occurence. This is part of my cancer fight.

I decided to address one bill at a time. The first one I wanted to resolve was a bill that first came in August. It was obviously wrong. My insurer agreed it was wrong and the hospital agreed it was wrong. Both told me to disgard the bill.

Then the same bill came in November. I called the hospital. I called my health insurer. They again agreed that the bill was wrong and advised me to disgard it.

Then, incredibly the same bill showed up once more one day after Christmas. It took me hours of many phone calls back and forth between the hospital and my insurer. I told Barb I'm not letting go until I feel confident this has finally been fixed.

After the entire morning on the phone, after the entire morning of banging my head against the wall, my health insurer told me they were going to send a check to the hospital for the amount due and I could disregard the check.

I feel confident (I hope) that this is finally it, after only six-months. (sigh) We'll see.

It was a mistake by my health insurer that caused all the confusion. It almost always is. I should be able to charge them my professionl hourly rate for all the time I've had to dedicate to this one single bill. I'd love to do this someday, just to see what happens.

In my cancer experience, one of the biggest ongoing challenges has nothing to do with my health (my sanity maybe). I battle cancer daily. And I battle my health insurance company as well.

With one of three taken care of (I hope), it was time to move on to the next bill that was wrong. But after hours on the phone yesterday morning I announced to Barb that it was time for a little nap.

Barb asked me if she minded if she tried to call the hospital or Aetna about it. I told her to, "Go for it!"

When I woke up from my power nap I quickly noticed Barb's face - strained, stress, baffled, upset. She looked like she was banging her head against the wall.

I smiled. "Hey," I said to Barb. "I know that face."

Here We Go, Manic Monday

Anyday I don't have to deal with my health insurance company, or the billing department at the hospital is a good day. I think it' safe to say that I already have my hands full today. What a mess.

Yesterday, just out of curiousity, Barb looked up the side-effect of Interferon, the current cancer drug I'm on. She just kept listing them and listing them and listing them. I politely cut her off. Thanked her. And said, "Jeesh, why don't they just list what it doesn't effect."

It effects everything, and I certainly feel most of them. I've lost about 20-pounds now even though my appetite is still good and my eating is still strong. What I've lost is body mass. My body is just shrinking. Everything is getting smaller. It's hard to explain.

Typically when you think of losing weight you think of shedding some unnecessary fat, maybe around the waist or the buttocks. But this is different. Everything shrinks down towards the bone.

It makes my body much more sensitive. That body mass was a buffer for my body. It protected me from feeling the elements. Now I can walk from the bedroom into the hallway and notice the slightest temperature change. With the freezing temperatures outside, I can't even imagine stepping outdoors. The freezing weather would just shoot right through me.

Yes, when I do have to go outside I am dressing in layers like Nanook the Eskimo Boy.

It can be a little frustrating when you're exercising and eating and doing everything in your power to build up the body mass...but still...nothing. I do think that my weight is finally reaching a low level where it won't continue to shrink.

I mean this is cookie season after all. I've never had a huge sweet tooth. But when I walk through the kitchen and there is just a plate of homemade cookies or brownies sitting there...oh my...I get all excited and just can't control myself.

I do believe that our son-in-law's Mom, Maria, makes the best cookies I have ever had in my life. They're all Italian creations. They're all extraordinary. I polished off the first batch in a couple of days. I just received a second batch yesterday. WOW!

Excuse me. I might need a couple now. (Munch. Chew. Chew. Bite. Munch. Chew.)

INCREDIBLE!

I had to grab one of my wife's incredible brownies too.

How can't I gain weight?!?!?!

Nice Slow Start to the New Year

I've had a lot of great pork and sauerkraut through the years. But yesterday Barb cooked up one of the best batches I've ever had. Wow! Was I so full.

I'm going to take a weekend off the blog and start the New Year slow and easy, just take care of some things around the house, have a nice afternoon nap.

Monday will come soon enough and I'll get to jump in between Lancaster General Hospital and Aetna in their billing dispute. I don't look forward to it. It is literally like banging my head against the wall. But I'll wake up ready to tackle the giants once again.