Crazy Kooky Cancer

Cancer is a constant chase. Everyday is different. It's hard to plan a lot of things. You kind of have to wake-up each day, evaluate the day's situation and go from there.

Yesterday was unique. I ate everything in sight.

Oh, I've been eating well, three times a day, healthy stuff at healthy portions. But my weight keeps creeping downward, so my healthy portions must not be healthy enough.

Typically I've tried to eliminate drugs from my daily schedule of pharmaceuticals whenever possible. Months ago the oncologist offered me Megistrol to help with appetite. I took it. It seemed to jump start my appetite. And once I was happy with my eating again I came off the Megistrol.

After seeing my family doctor on Monday I left determined, once again, to try my best to put on pounds. The doctor had me lie on my back to listen to my stomach when he suddenly exclaimed, "Well that's unique, you're so skinny I can see your aorta pulsing at the top of your stomach."

So I decided to go back on the Megistrol starting Tuesday. Tuesday evening I made my Mom's famous chicken ala king, served myself up a nice, large portion and completely cleaned my plate. That plate was so clean we could have just put it back in the cupboard.

Yesterday was even more impressive. I ate more throughout the day yesterday then I've eaten in one day in months. Typically my stomach maxes out fast and gets full and sore feeling. Not yesterday, I just didn't feel like I could get enough food in me.

For breakfast I had two big hunks of cranberry breakfast bed, a slice of cantalope and then I polished off the chicken ala king from the night before, served over a toasted english muffin.

For lunch I bought a serving of shepherd's pie at the deli across the street and ate it all.

In the afternoon I polished off a bowl of goldfish crackers.

That night we had pork barbeque sandwiches on HUGE kaiser rolls, couple with tater tots and I left nothing behind once again.

And to date my digestive system seems content with it all. A small miracle for me.

Now typically the vegetables in the chicken ala king would run right through me without stopping to digest for a moment. The corn in the shepherd's pie would do the same. The ground beef in the shepherd's pie typically would start a major revolt. I can get away with a couple goldfish crackers, but a whole bowl? That would be like a punch in the tummy. And tater tots? Well I'd typically pick at one or two to be polite. But I ate them all. Unheard of.

I'm going to keep taking the Megistrol, every morning. And I'm going to try to repeat yesterday's feat again today. Because, 'ya know, I don't think you're supposed to see your aorta beat in the top of your stomach with the naked eye.

But you never know, all you can do is get up each day, evaluate and do your best.

It's crazy, kooky, cancer.

No Parties

"I don't belong to any political party. I'm a Democrat."
- Will Rogers

I understand that people feel comfort in groups. Bonding, associating similarities, coming together in numbers, builds strength and power.

But I'm not much for groups. I had no idea what a fraternity was until I went to college. Then when I learned what it was about, jeesh - let's see the members of the fraternity abuse me for a semester while I pledge, and then if they accept me I get to pay monthly dues and the members of the fraternity will promise to be my friend?

Sorry. Not interested.

In American politics we have two big fraternities, the Republicans and the Democrats. It seems like quite a small number of interest groups considering we're the largest, most diverse country in the world.

And Americans are strangely eager to define themselves in one of our fraternities. I don't quite understand it, but most people I talk to seem to feel an overwhelming need to call themselves either a Republican or a Democrat.

I believe in good ideas, not good parties. I don't care whether an idea originated from a Republican or a Democrat. I just care about the idea, and whether it's a logical, workable idea in tune to our society and our lives.

But how often do our representatives tow party lines? Almost exclusively. It's the fraternity after all.

We seem to forget that our representatives our elected to reflect our views. They are sent to Harrisburg or Washington to represent us. But do you ever here one of our representatives say "this is in the best interest of my constituents." I don't. I hear our representatives say "I believe this or that . . ." You believe? I thought you were there to represent me? to represent us?

There is only one thing that will take our representatives away from party lines - fear of losing the next election. And that fear comes from your voice, our voices, not enough heard.

I'm an independent. Like Will Rogers I don't belong to any political party. I believe in the idea of Democracy as originally presented by our founding fathers.

I often hear about our great Democracy. Well, maybe someday. I hope.

But a Democracy is one person one vote and technology may help us reach that someday. But for now we are a Representative government, voting for people to represent us. And if we keep working hard maybe we'll learn how to perfect that government form.

Fear and Loathing in February

This time of year has always been my least favorite time of year. It's cold. The outside is dead and hard and lifeless.

Through the past few years this time of year has given me even more reason to dislike the month of February.

February has been the month in the past couple of years that cancer has done its worst damage to me. February was the month I first experienced symptoms of my cancer, painful, horrible, life changing experiences. February was the month I was first diagnosed with cancer. February was the month my cancer first spread to my brain. February has been bad.

But I approach this February with a strong and positive attitude. I do believe that this February I'm going to breeze through without ill effects. Recent tests have given me no reason to have any immediate worries.

But that fear and loathing of this time of year will always remain in the back of my mind.

Quite frankly I'd like to go to sleep tonight and wake up to learn that it's March 15th, with Spring just around the corner.

It's off to the family doctor today just to catch up on my general well-being. The digestive system has gone into revolt again the past couple of days, and that makes gaining weight impossible. The fatique is certainly still an issue but I've learned to manage it in various ways. The skin has also become quite sensitive. I have to keep wearing baggy, loose clothing because the skin can itch and rash from just fabric rubbing back and forth across my skin.

But these are all side effects of the chemo drug, and not direct cancer related ailments. As my oncologist stated the other week, it seems that I'm learning to live with the effects from the chemo. Give humans enough time and they learn to live with just about anything.

An Early Birthday Gift

There is nothing like getting an early birthday gift. So my husband gets me a Bowflex, he knows that I enjoy staying physically fit. At the same token, I wonder if it's a hint that I need some work, nonetheless I am enjoying. It was difficult for me to just lift weights in the living room, because it seemed odd to be doing such a thing there, but now we have a designated room for that.

I certainly hope everyone has a wonderful weekend.

Swamped and Enjoying It

My "to do" list has been quite full this week, and seemingly growing by the day. I have to be a little careful not to overwhelm myself into frustration over getting things done. But I feel that slowly filling my schedule is more and more important to keep me energetic and involved.

The "to do" list is large enough that something has to be set aside each day. The tough part this week has been setting aside exercise to run around, meet contractors, or work on other projects. Not to mention having to carefully work in food breaks, at times that fit the chemo schedule and my maximum appetites during a day.

It's a delicate balancing act. Simple things I would just take for granted have to be planned out a bit more. It always helps me to know what's coming up in the next hour, the next day, the next week, so I can ensure that I'm mentally and physically prepared for the event or task.

So I better get off the blog and get down to business. It's breakfast time in Marietta and I'm feeling hungry so I need to take advantage of it. Then I need to get back to those exercises before grabbing a shower and getting Barb off for some routine bloodwork. Then it's back to saw some trim and do a dry fit in the new office. Then I need to contact a couple more contractors for estimates on work we're looking into. Well you get the picture - there's about a dozen more things on the list today.

Combat Zone

What does it feel like to have cancer? Well it is different for everyone. For me it's kind of like feeling a little under the weather every day.

The strange thing is, for me, everyday feels like there is a battle going on between the cancer and the chemotherapy drug. And everyday the feeling seems to show up in a different part of the body.

I don't know that that is true, and I have a feeling my doctor would disagree with the theory. But I have no other explanation than my body being a daily combat zone between the cancer and the chemo.

I can wake up one day and be sore here, or be sore there, or there, or here, or there. Some of it is simply muscle soreness from my ongoing exercising. Some of it is simply mysterious.

Every now and then there is what seems like a break in the ongoing battle and suddenly I feel almost like normal and quite energetic. Monday was one of those days.

Then other days it seems like the battle rages inside me and I'm completely drained of energy, just want to sleep, and can get little accomplished. Tuesday was one of those days.

Today? I'm not sure yet. The sun is only rising over the battleground.

Hibernation

No getting around it we're deep in winter now. The temperature outside has struggled to reach freezing and the outdoors is frozen solid and merciless. The branches are lifeless and empty, offering us our annual view of the Susquehanna River the sun glistening from it like a mirror.

It's this time of year that I dart from one warm place to another, taking little time to soak in the great outdoors. I now know how much warmth my hair offered me. Now my ears and nose turn to ice cubes.

It's a good day to stay inside and cook and eat, and try to get some pounds back on me. The temperature is below freezing and there is a dusting of snow on the way.

I wanted to run around this morning and grab some wood trim for the new office - but it's cold. Seems like a better day to cook scalloped ham and potatoes. Seems like a better day to make some homemade chicken salad from the remains of Sunday's chicken roaster.

Seems like a better day to get a full belly and hibernate until Spring.

Cancer and the Internet

When I first learned I had cancer I really didn't know how to react because I really understood very little about cancer.

I guess I've always kind of had an attitude that I would worry about cancer when I or a loved one had cancer. Until then, I just wasn't going to worry about it, which means I wasn't learning anything about it.

To a large extent, cancer seemed fairly random and struck across genders and ages and ethnic groups. It seemed like being worried about being struck by lightning. If it happens it happens and there isn't a lot I can do about it.

In the paper every week I would read a story like the rest of us that claimed that this may cause cancer or that may cause cancer. I've been waiting for the headline "Air May Cause Cancer." I'm sure we'll see it any day now. Again everything about cancer seemed so random and elusive that I couldn't rationalize worrying about it.

But then when you actually get struck by lightning (diagnosed with cancer) you decide it's time to learn everything there is to do about it.

And this search of knowledge leads one to the internet, the source of endless information both good and bad.

I found endless amounts of information on kidney cancer from an endless array of sources. There was information on origins, growth, effects. There was information on treatments and drugs. There were forums and bulletin boards and blogs, all outlets to meet others diagnosed with the same condition as you.

Once I told a doctor about something I had read on the internet and after his eyes stopped rolling he said, "You can't trust what you read on the internet. What you read was written in the 1960s."

He's right. I know. The advances in cancer research and treatment options is moving so swiftly these days (especially in kidney cancer) that the publishing world has a tough time keeping up.

But there is enough information out there that you really can narrow down fact from fiction and be filled with a wealth of knowledge on your cancer. And knowledge is power.

Oh My It's Cold

It's crazy cold outside. I can take it until the temperatures hit freezing, after that just keep me inside. Today the temperatures are not even going to get near freezing.

But it's nice and warm in this old house and that is where I'll stay. Barb has been roasting a whole chicken all day and just started on her world famous mashed potatoes. The aroma has taken over the house so much if I moved my jaw up and down I swear I could taste it. We're 30-minutes away from lunch.

Now it's not every gal that would like a home gym as a birthday present. At least I don't think so. But Barb has been very excited about her new Bowflex. We spent the day yesterday assembling it. Pieces and parts across four large boxes, but generally the directions were good and the assembly went well.

It will be another week of lots of little projects. It's important for me to stay busy. Once we get things reorganized around here I'm hoping to spend more time with photography, artwork and writing.

Stay warm everyone!

Reality Says Hello

No matter how you approach it, visits to the doctor tend to bring some realities to the forefront that you may work hard to forget.

You know, things like exercise more, eat less, lower your stress, the doctor is good at reminding you of the stark realities of your fragile human body.

As a cancer patient I do think about my cancer everyday. But I don't get caught up in it. I do believe that when it is any of our times, then it is our time, and there's little we can do about it. I've always said, "When God calls, I'll go." And that reality applies to us all, cancer or not.

I like to think that I am living with cancer, not dying from cancer.

And without the doctor it's easy to go out and live. Sure there are the many side effects of the drugs, waiting to remind me of my condition around every corner. But you learn to live with those kind of things, and keep living each day, accomplishing, completing, doing, getting things done.

And although my test results were great, the doctor yesterday still was good at reminding me of the realities of my cancer, of this disease. It's his job.

And I soaked it in, and I studied his words and his mannerisms, and I considered all of my options from here, completely immersing myself in it.

And now it's time to go back to living.

The Skinny

We just got back from the oncologist's office and we reviewed my recent scans and current status.

The big thing that I learned today is that in medicine there is little that is black and white. Things are really more different shades of gray.

Basically, as far as my bloodwork is concerned everything is great.

As far as the MRI of my brain is concerned they found nothing. (LOL - I always love to hear that. There's nothing upstairs at all.) But seriously everything in the brain has disappeared and there is no new signs of any abnormalities.

The CT of my pelvis showed everything normal.

The CT of my abdomen noted one odd, irregular shaped tiny little dot in my left kidney that has shrunk to just about nothing since first being noted in March. I found it interesting that it was first noted in March because this was the first I had ever heard about it. But it never was an issue raised in the past because it's so small that no doctor ever thought much of it. And whatever it is, it keeps getting smaller and smaller.

The CT of my chest raised the only question for my oncologist. A nodule in the upper lobe of my left lung was first noticed about a year and a half ago. It grew to its largest size of nearly an inch early in 2007. After starting the chemo however it shrunk to around a quarter of an inch in size. Now with this scan it increased in size ever so slightly. I mean a real, real small increase in size.

The oncologist was left with a decision to do an expensive PET scan or just wait and watch. The PET scan traces radioactive sugar injected into the blood stream to trace cancer hot spots, since cancer cells use sugar at about 20 times the rate of normal cells.

The nodule is so small that a needle biopsy, to grab a piece of the area for testing, is not practical.

The oncologist concluded that with or without the PET scan he would recommend the same treatment, continued taking of the chemotherapy drug Nexavar. So we came to the conclusion that we would skip a PET scan at this time and follow-up with another CT scan in two months.

All in all, it's not black and white, it's always a shade of gray. But I and the doctor both think that this is all good news. With this condition it's just a constant scheme of checking and double checking and triple checking. I'm feeling good about making it through another round of tests.

The only somewhat unhappy camper of the day was Barb, who was disappointed to hear that my weight had dropped to just below 180-pounds. But as I explained to her - I'm eating three meals a day, I'm exercising, I don't know what else I can do. I do believe that my weight is leveling off. And I know that I'm eating the healthiest things I've ever eaten in healthy portions.

But I love Barb for looking after my best interest. And as I told her, any ideas she has to put weight on me I'm all for it.

Busy, Busy

I think one of the best ways to fight the anxiety of scans and tests is to just stay busy. And we've been busy here.

The carpet is completely in place in the former photo studio that is our new office. I need to find time to run out and get trim yet and cut and fit it into place. I've also got a lead on a custom blind maker for the large skylight, and that will have to be ordered and installed. Then we can start moving everything into place and get the computer network back up.

In the meantime Barb's birthday present is here. The new Bowflex is spread across four large boxes now. That will end up in an upstairs spare bedroom which is being turned into our exercise room. Barb is anxious to turn her biceps from twice as big as mine, to ten times the size of mine. I'm looking forward to the exercise room myself. The exercise is ever more important in my continued fight.

Then the old office has to be converted into the library, sitting area, overstuffed men's club cigar smoking lounge kind of thing.

We're creating a photo gallery in the hallway upstairs, have a couple personal art projects going, and gallons of paint and paint and paint all over this old house.

But amidst the projects I have to remember to eat (which Barb kindly reminds me to do), and I have to eat within the time limits allowed by the medications.

And to eat we need food in the house. And to get food back in the house it means groceries. So today it's off into the cold to do the butcher and grocery store run.

Tomorrow I'll post a full update after the appointment with the oncologist.

Woohoo!

Well Barb just talked to the oncologist and everything is clear on both the MRI and the CT scans. Woohoo! There is no new evidence of tumors or growth.

I went into these scans with just one existing "lesion" in my upper left lung. The doctor seemed to imply that this very small lesion increased ever so slightly in size. But it was not enough to concern anyone.

Actually the oncologists are starting to wonder if this spot is actually cancer at all.

But we're going to talk about it more with the oncologist on Thursday. He hinted that he might order another PET scan just to see if that area "lights up." That one spot is a little confusing at this point. But we'll get to the bottom of it on Thursday.

Overall though the scan summaries were very strong and positive. I'm hoping for another three-months off from the health industry.

Now We Wait for Results

The CT scan of my chest, abdomen and pelvis was completed yesterday morning. We'll call the oncologist's office this morning and see if we can the results of the CT scan and Friday's MRI of the brain. Typically we'll call in the morning and have a nurse call with results near day's end.

I was wiped out after the scan yesterday morning, as predicted. Actually the worst part was starting my day with nothing in my system but the CT prep drink ("berry smoothie") and then the CT dye injection. My body was not very happy about that. There were growls and noises coming from my mid-section like I've never heard before. And my mid-section has produced some loud growls and groans in the past six-months.

It took some extra medicine, beyond what I normally take. But my insides did settle down by mid-afternoon. I was back together again in time to cook us shrimp scampi for dinner.

One thing that still amazes me is how my body is so demanding of only healthy foods. If I fall out of line and try something my body doesn't want, it lets me know. I mean what I'm eating right now is probably what we all should be eating. It just amazes me that in this time of need my body takes over and tries to direct me towards fulfilling its needs properly.

Barb made some unbelievable "mudslide" cookies, absolutely a chocolate lover's dream come true. I had to try one. I mean come on! Nope. I paid for it.

Birthday party with some cake and ice cream? Oh my no, my body would make me pay for that terribly.

A little afternoon bottle of Coke with a bowl of Doritos? Those days are long past.

I may have lost a good bit of weight in the past six-months, but I believe that I've settled into a weight that my body has determined best. I believe I've leveled off at my "fighting weight" - the best weight for me to fight cancer.

One More Scan

There's just nothing like starting the day with two big bottles of Barium Sulfate Suspension - berry flavored. The label calls it a "berry smoothie." It came with a neat "bendie" straw.

I have to drink the stuff everytime I get a CT scan. I start two hours before the scan, drinking half a bottle every half an hour. It's chalky and kind of disgusting, and it's berry flavored. lol

It fills up my stomach and digestive systems so it stands out more on the scans.

I've learned to wince a bit everytime I'm presented medicine that is flavored. I've had cherry flavored, mint flavored, banana flavored, and now for the first time berry flavored. If the flavoring is helping - I'd hate to taste it without the flavoring. Whew!

I can't eat this morning until after the scans. They'll look at my chest, abdomen and pelvis. I'm hoping to collect the results of the CT scan and Friday's MRI by late tomorrow. The oncologist's office has been really good about getting me the reports.

And I'm due to get stuck by another needle this morning. My veins used to be so easy to hit with a needle. But since the Nexavar causes such dehydration my veins have become fairly elusive. It's become much to common for nurses to have to poke me with the needle a couple of times before they strike a viable target.

They'll inject contrast dye into me to highlight the insides even more. I'll spend the rest of the day drinking tons of water to flush out the dye. The dye is hard on my kidney, and I've only got one left.

All in all I'm likely to be exhausted by the time we get home. For some reason having to deal with the big hospital, the receptionists, the nurses, the doctors, just wears me down.

Busy Month

I expect the month of January to be somewhat busy, with things that need to be done within the house. The carpet tiles look very nice in the room that initially only had sub-flooring. Little Susie, Jim Grim, and Jay Hoke's all celebrated birthdays this past week. There had been a celebration of cake and ice cream last night, but we were unable to attend and sent our love.

Thursday, which had been my mothers birthday, she celebrated by having Alyssa give her a facial and sounds like she enjoyed it immensely. I figure when my birthday gets a little closer, I will take my turn.

With Jim's appointments this month, the only thing I expect is continued good news, with no reason to think otherwise. Everyone have a wonderful Sunday and enjoy yourselves.

Back to Work

The fat and happy days of December have but passed and it's back to work.

Life is full of ironies. Before cancer I had the energy to work on this old house of ours, but never the time. After cancer I have the time but not always the energy.

But I keep at it.

Today my energy level was good and I was motivated by seven boxes of carpet tile. We're carpeting the photo studio, then converting it to the office and converting the office to a library/sitting room/men's club cigar smoking overstuffed chairs kind of space.

Barb's Bowflex (birthday present) is now due on Tuesday. She's been scouting the daily updates on Fed-Ex's web site. One bedroom upstairs is being converted into a health club. And that's where I'll be doing my exercises too (because they are helping).

It's not very exciting stuff. But it keeps me moving, gets me up and about, keeps the mind ticking, and leaves me with a nice little feeling of accomplishment.

And boring is good. I've had enough excitement for awhile.

Old Magazines

Well we're off to the Lancaster General Health Campus to have my MRI. I like trying to be one of the first appointments of the day. In the medical field it seems as if schedules fall apart as the day grows long - and I can understand why.

We have to be there a half-hour early so they can ask me the mandatory questions. You know questions like "Do you have any metal in your head?" Well I guess that depends on who you ask. lol

There is a lot in this world I do not understand. But one of those things is definitely why the MRI is so noisy. Since when do magnets make so much noise?

They offer you headphones and music. You can even bring your own music. How about that? But I'll just listen to their Frank Sinatra again. It's relaxing. And Frank's been lucky for me lately.

Barb will be stuck with the old magazines in the waiting room for a good 90-minutes. But she's typically way ahead of the game. She's had to do this too many times (such a sweetheart). I'm sure she'll be loaded with a book or a few crossword puzzles.

Then it's husband and wife bloodwork for us after the MRI.

Then we're racing home to try not to miss a Fed-Ex delivery. I got Barb a Bowflex for her upcoming birthday (she's going to be 26-years-old!), and man is she excited.

It's been a great three-months off from tests and doctors visits. I didn't miss reading all those old magazines at all.

Here We Go

It's that time again. Friday I have a follow-up MRI of the head and some blood work, and then Monday I'm scheduled for a CT of the chest, abdomen and pelvis. We're hoping to have results by Tuesday afternoon. And then we'll meet with my oncologist next Thursday.

I'm feeling pretty confident going into the tests. Most everything I seem to feel seems to be related to side effects from the chemotherapy, and not tumor growth. But we'll go with the flow and hopefully put these tests behind and get on with another three months without reading old magazines in doctors' offices.

At least for this round of tests we've scheduled everything into less than a week rather than across a month like last time. It cuts down the anxiety period.

Barb and I are so thankful for everyone's continued prayers and support. It means a tremendous amount to pick a fight (with cancer) with 100 people behind you than to take on that fight yourself.

On another, repetitive note - Aetna actually called me back yesterday. That was a first! And they were only two-days past the three-day window they said they would call within.

Unfortunately it was still the same old run-around. I may have been born at night - but it wasn't LAST night.

I was pretty firm with my case manager, who is obviously trained to try to make people feel good about Aetna, and make them go away. I was convincing enough to have her talk to her supervisor and her medical director, at least that's what she said. And she did call me back with a follow-up, another first for Aetna.

The case manager even went as far as to call Bayer to inquire about my status in receiving Nexavar, and my continued hopes of receiving Nexavar from Bayer. When she called me on the follow-up she told me that I'll be continuing to receive Nexavar from Bayer so she doesn't understand what my problem is.

I told her "you sold me lobster and served me a peanut butter sandwich. Right is right. Honesty is honesty. Aetna made a mistake and I believe they should owe up to that error."

"How would you feel if this happened to you?" I asked.

Silence.

That's always the question that seems to draw no response, asking people to put themselves in my shoes.

"OK. I'm going to look into this some more. I will be back in touch with you," she said.

We'll see.

Power of the Mind

When I stopped eating virtually everything and dropping weight substantially I felt helpless to do anything about it. Everything tasted terrible, seemed unappetizing to me, and the pounds shed and shed.

One day I stepped on the scale and my weight dropped below 190-pounds and I got upset with myself. I've always prided myself on my strength. How could I be letting this weight loss happen to me?

I vowed to myself right then that I was going to change this pattern. I took myself out back and gave myself a good talking too.

It worked. The mind is an incredible thing.

Really I can't name any other reason for my turn around, except possibly prayer.

First my brain convinced the rest of my body that we were going to eat - like it or not. The food was on its way, at least three times a day, and the body better be ready for it.

Slowly but surely my body started to accept food more and more. It helped me learn what foods it wanted. It helped me learn what time of day to eat. It helped me learn what drugs, at what concentrations would help.

Secondly my brain made food and eating appetizing again. I had always loved to cook and eat. My brain taught me how to bring the joy in food back again. Filet with my red wine pan sauce, crab cakes, a cheese steak - I was learning appetite and taste virtually from scratch again.

It all changed that one day that I "had a talking to with myself." Once my brain was convinced that the gameplan was necessary it showed my body the way. The power of the mind, in attitude and perspective and thought, is so important to any cancer patient. But understanding the mind and its workings can be a lot easier said than done.

Another Year

I cannot believe where the time goes. I am glad to see this year pass and look towards a brighter times. It has taken every ounce of strength I have had, thank goodness I had some it stored away. Personally, I feel that everything is on the up-swing. I look forward to doing some more of the things that we haven't entirely been able to accomplish and get things done as we see fit.

I still may get myself involved in some type of home-based business, but I am not quite ready for that undertaking yet. Also, I usually try and stay on top of getting the taxes done, but the government has seen fit to allow for some changes, so I would expect delays, plus you never know just how quickly you'll get all your necessary tax information. I enjoy doing that type of work within the accounting realm and last year had done some friends taxes for them.

On a much lighter note, Happy Birthday to my Mother, my Brother and my Brother In Law, all within days of each other. I also extremely pleased that my daughter passed the second half of her testing for her license. There had been no doubt in my mind that would be the case.

Happy Day To All!!!

Leaving Them in Stitches

Yep, Mom was always there to stop the bleeding, patch me up, or get me to the emergency room.

I guess it's all part of growing up. Kids will be kids. But I seemed a little more bent towards physical challenges than most kids the same age. Before there was the movie "Jackass," there was me.

I've fractured my skull, broke two ribs (then caught pneumonia), broke the same ankle twice, smashed my one knuckle to pieces, and broke just about every finger at least once.

That's just the serious stuff.

Much more frequent was cuts, often followed by stitches, and countless numbers of bruises.

I remember thinking how cool it would be to jump off our back deck, which is about 12-feet in the air. So I did.

Every year my Dad would have a big pile of dirt delivered to patch holes around the property. Well, that pile of dirt quickly became my Evil Knievel ramp each Spring. And off I went on my old Schwinn with the banana seat and the big handle bars, speeding towards the pile, flying through the air, then trying to mark my landing spot so I could go at it again and go higher, go farther.

I ran through cornfields, through woods. I wore through the knees of my jeans like I never learned to walk and just crawled around on all fours. I gathered all of the neighborhood kids together and organized football games, baseball games, at least once a summer I would organize the "Albert Olympics," with great events like the bike jump over Dad's dirt pile.

I'll never forget catching a diving pass for a touchdown in our neighbor's yard. The driveway was all loose stone, and it also happened to be the end zone. A stone embedded in my knee leaving a deep, wide cut.

Mom patched me together and got me off to the doctor's office. The doctor informed me that he was going to use a new technique - not stitches, but staples.

Staples? Well I didn't like the sound of that.

"Will it hurt?" I asked.

"No more than when you caught the touchdown pass," the doctor replied.

It hurt like crazy, three big, wide staples right on the top of my knee.

Driving home I asked my Mom "How do these staple things come out?"

"They'll fall out," Mom said.

"Fall out? When?" I asked.

"When they're ready to," she replied.

Now sometimes Moms might not tell the whole truth, but their motivation is only positive. My Mom knew I was through enough that day. There's nothing more fun than a doctor's office and a few staples in the knee. So she told me a lie to relax me and ease my mind.

Weeks later the doctor pried out the staples. It hurt worse than when he put them in.

Probably one of the most memorable of my many injuries was the time I got hit in the head with a golf club. I believe it was a 9-iron.

The reason this event was so memorable is because it's documented in a picture, one of my favorite pictures.

The day before Easter my cousin was visiting and we were knocking a few golf balls around the yard, taking turns picking out a target and shooting for it. True to form I walked straight into my cousin's swing, taking the 9-iron straight to the head. It was completely my fault.

It didn't hurt a whole lot. I put a hand to my head, then brought it down completely covered in blood. OK, now I was excited. I ran in to find Mom.

We were off to the emergency room. I was a bit of a regular. I took about a dozen or so stitches and left with my head wrapped in large white bandages.

Every Easter my Mom bought us all new suits and dress clothes and got us together for pictures. That Easter picture I'm all decked out in my new Easter suit - with a huge white bandage wrapped around my head. I love that picture. lol

And I'm not even going to go into the story of how my Mom snuck me into a hospital to have a broken finger set by an agreeable doctor.

It's probably good that my Mom was a nurse by profession. Although many days she probably felt like her work never ended.

Thanks Mom!

Fore!

I grew up next to a golf course, Lebanon Valley Golf Course. It's a pretty unique neighbor to have.

My Dad, my brother and I all played golf, although we never bought a golf ball. We found more than enough in our yard. Everytime we'd mow the yard we'd pick up a couple more balls.

I have been hit by a golf ball while playing in our yard. I tried to get out of the way but it took one bounce and slugged me in the shoulder. I also watched as our dog Casey took a hit from a ball one day. Both of us were a little bruised but fine.

To actually hit a ball in our yard you had to be a pretty lousy golfer. Our property ran along the 11th hole fairway. The hole dog-legged away from our yard. So if you were over in our property you hit your drive really, really, really in the wrong direction.

Golfers would occasionally ping a golf ball off of our house. That took a really terrible shot and was pretty rare. Once a golfer hit a ball so poorly that it ended up in our garage wildly rattling about. I was always somewhat amazed by that feat. Now that's a lousy golfer!

I remember once we came home to find our car windshield cracked, obviously from a golf ball. My father went down to the clubhouse and sought out the owner. Before my Dad could get out a full sentence, "A golf ball cracked a windshield on my car and . . ." the owner spouted off in angry babble. "You knew there was a golf course here when you built your house!?!?!? What do you want from me?!?!?"

"Nothing," my Dad said. "I just thought someone may have left a note or a phone number."

That's what my Dad would have done.

The owner of the course was a short, overweight, dirty, unshaven, mean make of a man.

And no one had left a note.

In the winter time the golf course turned into a sledding fantasy land. This golf course happened to be interlaced among several large hills. The sledding paths were endless and provided extremely long, exciting runs. Both my sister and my brother lost their front teeth sledding that golf course.

I often wonder if I ever would have played golf if I had not grown up right there beside a course. I probably never would have played. But it was right there. How could I not play?

As a young teenager I would go out on summer days, pay the $2 green's fee, and play all day long. I walked the course, carried my bag, and the most rounds I ever played in one day was three. There were no spikes, no ball markers, no golf gloves, no funny hats. It was just me in cut off shorts, no shirt, and ripping that little ball long and down the middle, enjoying the pristine, well-groomed nature around me.

One day when I was about 14 I took off on one of my all day golf outings. I played the first four holes very well with three pars and a bogie. An elderly gentleman was keeping close pace behind me. After I hit my drive on the fifth tee he caught up to me and yelled, "What do you say we play together?"

I grumbled to myself. I didn't want to play with some stranger. Who was this guy? And I was off to such a good start. He was going to make me all nervous.

"Sure," I said. I was raised to be respectful.

As we played on together my game even got better. I was playing out of this world. Every shot I hit was magic. The elderly gentleman gently cheered me on. It was almost like he was an ancient Irish golf spirit sent to oversee my game.

I shot a 76. To this day that is the best round of golf I've ever played.

I never saw that man again.

Once when I was out and about in the yard I saw the owner of the course riding his cart down the 11th hole. He looked over at me and suddenly turned the cart onto our property speeding toward me. I stood frozen.

He slammed the cart to a stop right beside me, stood up next to me, grabbed me by the shirt collar and started to shake me about. "What did you do to my brass sprinkler heads?" he yelled.

Now fortunately my Dad was working in the planting beds around the house and upon seeing this scene quickly ran over. He broke me free from the grip of the golf course owner and gave him a few firm fingers to the chest. "What do you think a kid wants with a sprinkler head?" he asked.

He was right. I had nothing to do with the disappearance of a brass sprinkler head or anything else. I never stepped foot on that golf course unless I was a paying customer or unless it was covered with snow.

My Dad sent the owner packing. Both were left grumbling.

Later that night I was in the yard near our walnut tree. It was a pain in the butt of a tree. It wasn't much to look at and every Fall it dropped golf ball sized walnuts all over the place, which were a serious hazard to the lawn mower.

I thought I'd help my Dad out by picking up some of the walnuts. Considering the circumstances of the day I felt the best place for the walnuts was down on the 10th green, just an easy toss away.

I must have covered that green with over 100 walnuts. I couldn't help but laugh. It wasn't nice, but it was harmless. And I owed it to my Dad who stood up for me.

Thanks Dad!

In Summary

After spending the week researching every conceiveable option, after working the phone and seeking the advice of nearly a dozen experienced folks, I've come to the conclusion that for now there's not much I can do.

Currently I receive my chemotherapy drug through a patient assitance program run by Bayer Pharmaceuticals, the maker of the drug. But that expires on March 23rd, and I'm trying to assure continued supply at an affordable cost. The cost of my chemo drug is nearly $5,000 a month.

I believe that my insurance company, Aetna, should be responsible for covering this drug under my policy. But they refuse. They decided to change my plan.

So my options right now are only two.

I can continue to fight and take on Aetna. That's a real David versus Goliath there. That fight would require support of local legislators, the state insurance commission, an expensive attorney, the local media. I'd rather concentrate on my health right now quite frankly.

My other option is to simply wait until February 22nd when Bayer will begin to review my case and make a decision on the supply and cost of the drug to me.

So there are no government funded options available to me until September 2009.

Of the private assistance programs that exist either their support is minimal or there is simply no sense in applying until Bayer makes its decision in March. Bayer's patient program is head and shoulders above any other program.

Or maybe Aetna will suddenly care about providing what they promised, running an honorable business, and doing what's right.

So this week I've learned that a cancer patient working to afford unbelievably expensive drugs stands their best chance working with their doctors and the pharmaceutical company itself.

Not what I ever would have guessed.

Through this cancer patient's experience I've learned how wonderful the doctors and nurses have been, how helpful the drug manufacturers can be, how everything through the government involves lengthy delays, and how my insurance company works against the interest of my health and in the interest of their own profit each step of the way.

Baby It's Cold Outside

I can take it pretty well until it gets to freezing. Below freezing is just brutal to me, and I move quickly from one warm space to another and spend zero time enjoying the scenery. This morning it is 16-degrees. Brrrrrrr.

I left Aetna alone yesterday. I'm politely waiting for someone to get back to me in the next 72-hours, for the third time.

I whine and complain enough, but I must say that the programs set-up by Bayer Pharmaceuticals to interface with patients is outstanding. Despite Aetna's blunders and constant ineptitude, Bayer quickly found a way to get me the chemo drugs through their patient assistance program. Bayer developed Operation Outreach and very well-trained individuals stay in touch with me once a month to see how I'm doing, to see if I'm having any problems with side effects, to see if I'm ready for a refill.

They're very professional and very effective. I'll gladly give credit where credit is due.

Meanwhile Aetna never, ever contacts me about anything except my monthly bill, which arrives about two-days before it's due every month. When I call them it's a guarantee of at least 15-minutes on hold, and having to confirm my personal information 17 different times, sometimes to automated recordings, sometimes to actual people. There is also a 25-percent chance that your call will be dropped at some point, usually my a confused CSR who asks you to hold, and then just hangs-up.

I should mention that I have an individual policy rather than a group policy. I was self-employed and an Individual Policy is the only choice. For some reason our government, through HIPPA statutes, ensured logical, common sense rights for individuals - but only in group policies.

For example, no one can be denied health insurance through a group plan. But they can be denied coverage through an individual plan. Hmmmmmm. What am I missing here? Why?

The more I learn the more I'm left scratching my head.

But life is a constant mix of good and bad. As I contemplated my business with Aetna yesterday the phone rang.

It was Operation Outreach, checking in. We discussed the usual, how I'm doing, if I'm on the same dosage of the medicine, if I had any concerns. I did mention my concern over what happens on March 23rd when our current agreement ends.

She saw right through me and immediately told me I had nothing to be nervous about, they would not let me go without the chemo drugs whatever the situation.

WHEW! Boy did I need that right about then.

Come February 22nd I will reapply for the program and they will reanalyze my standing. And hopefully things will work out for another year agreement for me to receive the drug.

But man was it good to work with a professional interested in positive outcomes, not positive cash-flows.

Let the Games Begin!

I worked the phone for a couple hours yesterday.

I'm back knee deep into it.

I was on the phone with Aetna for about an hour, about half that time on various holds. I spoke with two different people in two different departments, trying to decipher and interpret the insurance lingo they spoke in. Now a third person is due to call me back in the next "72-hours."

I've gone through this routine twice already. No one ever called back.

I've fought with Aetna over most of 2006 - playing a bait-and-switch with my pharmacy coverage, denying doctor ordered scans, questioning doctor's prescription decisions. What's the worst thing about cancer? It's your insurance company.

If honesty, and what is good and right, does prevail, Aetna will be offering me a pharmacy benefit as advertised and sold to me and then I'll have no worries of my chemo drug ever being covered and paid for.

And I believe in what is good and right.

There are strong chances that I will continue to be eligible for patient assistance through the pharmaceutical companies themselves. Or there are chances that I could receive some kind of assistance through private organizations. But we are talking about a cost of medicines at $5,000-plus each month. It's nothing to take for granted.

It's great to have those options, but it wouldn't be what is honest, good and right.

If I sell you a brand new sports car and then deliver you a junkyard jalopy you would demand some correction. It's what's right.

So I have to pursue Aetna to try to hold them accountable, have them step up to the plate, and do what's right. It's only the right thing to do. So I continue to pursue them.

I'll wait for someone to call me back in the next "72-hours." Then they're getting another call from me.

In the meantime I need to explore all my options.

I learned yesterday that I would be eligible for Medicare in 24-months from September, which is when I would be eligible for disability. Enrolling in Medicare automatically makes me eligible for Medicaid. Other than that, there are no other government-related options.

If I was dirt poor, or of retirement age, or a child, I would have viable options. But, unfortunately, I'm just your normal, average guy. So there are no government options.

Today I'll continue to explore opportunities on the private side. Bayer won't re-evaluate my status for assistance until 30-days before the current agreement expires.

More phone calls today . . .

Here We Go

A big welcome to 2008, and Happy New Year wishes to everyone out there. It should only take me until about March to remember to write 2008 on my checks.

First, a quick update from my last blog. We did brave the butcher and the grocery store on Monday morning. It was even crazier than I predicted. I forgot all the kids were still out of school. So not only was the store packed to the rafters, but every Mom also was dragging her 2.5 kids along.

I kept my cool pretty well though. I said "Excuse me" an awful lot to all the folks who like to shut aisles down with their carts. And I almost was run down by a couple of aggressive cart drivers. But all in all it wasn't too bad.

The closest parking spot was a few miles away. So I did get some darn good exercise pushing the full cart to the car.

I'll be anxious to getting back to our regular Monday morning store trips when it is just us and a couple of retirees.

Yesterday we filled the house with the smell of pork and sauerkraut. It was really good. It's rare that I go back for seconds these days, but yesterday I did. I ate more than I have in one sitting in quite a long time. Barb makes the best mashed potatoes I have ever tasted. And after words, I even ate a bowl of ice cream - moose tracks.

Unfortunately about 2 hours after finishing my digestive system revolted and I quickly lost everything I had gained. I knew I was pushing myself. I usually stick with just healthy portions, not over-doing it. But, now and again, there's only one way to find out where my boundaries are, and it's good to know that sort of thing. I just don't know whether it was due to over-eating, the ice cream, or possibly both.

Regardless, celebrating here at home allows me to push the mad borders a bit. If we would have gone to one of the parents' homes yesterday I would have only picked, because that is playing it safe.

The last couple months have been fun. But with the New Year comes a very busy January for me. I have a CT scan of the pelvis, abdomen and chest this month, and also an MRI of the brain. We'll then, of course, meet with my oncologist, and my primary physician too.

In January I will need to pick-up my fight with my insurance company again. They made a mistake, and I'm just asking them to make it right. If they don't make their mistake right then I could be facing $5,000 a month in charges for my chemo drug come March. We'll see. I'm not the kind of guy who wants to take this to the public, be it the courts or the media. But if they keep trying to push me around like the neighborhood bully, who knows how far this will go.

In the meantime I have to start looking for alternatives in January too. I need to speak with a couple of insurance counselors to see just what is available to a cancer patient, because who can afford $5,000 a month for one drug? Nobody I know.

So it will be a very busy, active January. Hopefully it's a dry January and we don't end up with too much ice and snow to deal with.

December was relaxing and a whole lot of fun. But we've got a busy start to the New Year here...so...let's get back to work!