Enjoy Every Sandwich

Happy Birthday Jim

2011-05-01T12:53:00.003-04:00

Today marks Jim's 47th birthday, rather than celebrating here on earth, he is celebrating in heaven. I can imagine it is spectacular.

I remember when Jim would tease me about being the same age for about three months and then I would call him a smarty pants when the age changed.

I miss him immensely, just as the rest of the family and my heart will always be with him. I have to always remember that he is in a much better place and to have known him, is so much more incredible than to not have known him at all.

February 5th already

2011-02-05T15:33:00.002-05:00

Well, today is my birthday and I am not boasting about it. Thank goodness I have a great family and friends that wish me the best. However, there is something missing that cannot be replaced from the male perspective. The void that exists will always be in regards to such a special person.

Like I said, I am thankful for what I do have and the continued love I share with both sides of my family, that will always remain.

Brrrrrrrrrrrrrrrrrrrr................

2011-01-23T15:09:00.002-05:00

I can't wait until winter is over for more than one reason. At least I had a nice lunch with Doug (Jim's brother) and his girlfriend Cristy. They are moving within a short period of time and myself as well as the rest of the family are going to miss them tons. I hope all goes well for them.

Everybody stay cozy as possible.

Looking Outside.....

2011-01-18T09:16:00.003-05:00

Looking outside, we have about 2 inches of snow on the ground with a sheet of ice on top. I certainly don't plan on being on the road today. I am awaiting for the Spring season to arrive for some warmth and hopefully some happiness.

I hope my mother-in-law recovers quickly from her knee surgery and I hope that my father-in-law is doing well.

Happy New Year

2011-01-01T12:01:00.002-05:00

Already January 1st, 2011. I hope this year is an improvement for many of us. I wish the best to everyone I know and care about and even those that I don't know. I will try and be more attentive to blogging.

I wish everyone a happy and healthy new year.

Pardon Me...

2010-11-12T08:49:00.002-05:00

Please pardon me, while take some time off from blogging. I should posted this sometime ago. It can be difficult to handle this the same way it had been done before. I hope at some point in the near future, I can continue to manage this somewhat better.

Kitty Sitting

2010-09-18T08:54:00.004-04:00

Alyssa and Charlie left for vacation this morning, they usually do this around their anniversary. They are headed south and I don't blame them. So I get to kitty-cat watch and bunny rabbit watch. I know how Alyssa is, she will worry about them the whole time she is gone. I just told her not to worry and just to enjoy their break. I have Chester, Misty and Cinnabon to care for. They are all adorable. Gaetano and I will be splitting the task of caring for them. I am glad I am able to help.

Also Happy Birthday to my niece Jade, she is 18 today.

I will probably go for a bike ride this morning and take care of other things as the day goes. Take care of everyone.

Very Chilly Morning

2010-09-05T08:36:00.003-04:00

As it feels like a fall morning outside, it is difficult to believe fall is almost upon us. I continue to try and back to the usual things in life, sometimes easier than others. The biggest accomplishment has been the drivers license, but my heart still heart aches beyond what I can explain.

I never look forward to the cooler months of the year, but that is just the way it happens to be.

Unfortunately Jim's Uncle Rhea passed away this week and had been dealing with quite a few problems for quite some time. I was only able to be around him a few times and enjoyed those times, he was a character.

I did enjoy being with my daughter on her birthday (25), that makes me feel ancient. It was a good thing.

All of you take care and thank you for your support.

Happy Anniversary - By Jim 2007

2010-08-06T08:09:00.003-04:00

Barb, I've known since the first time I met you that I wanted to be with you.

I've known since the first time we met, that you were perfect for me.

Sometimes in life the bells ring, the signals all alarm, and you just know something is so right.

That is how it has always been for me with you.

I feel we fit togehter like a glove. Perfect.

Your strengths are my weaknesses. You compliment me, support me, uphold me in every way.

I've found perfect love within us, and I will hold on to it forever.

You are each day's sunrise and sunset for me.

I live and give my life for you, totally, in every way.

There are a lot of unknowns in life.

...but I treasure the fact that I can hold in my heart...

...the guarantee that it's you and me forever.

I love you more than you can possibly imagine!

Happy Anniversary!

*I feel that Jim would not have minded my sharing this with those that Jim knew well enough the kind of person that Jim was*

August 1st Already

2010-08-01T11:54:00.003-04:00

I cannot believe it August 1st. I have begun painting the kitchen ceiling and will continue with trim and walls. This is one of many things that Jim and I had wanted to get accomplished. We had done the living room and it had turned out just the way we had wanted it to.

My road test is September 1st and I hopeful that all will work out.

I know Jim will continue to watch over me and the entire family, in the things we continue to do in our lives.

Happy Birthday Dad

2010-07-16T12:31:00.003-04:00

Happy Birthday Dad, to someone I have admired over the years and that has taught me alot. He has been a great help to Jim and I during the times Jim was to ill to do certain things and continues to do so.

All My Love,
Barbara

Concert Tonight

2010-07-09T08:13:00.002-04:00

Going(myself Alyssa and Charlie) to the Dave Matthews Band Concert tonight, in Jim's honor. I am sure that his soul will be with us. He is a fan of them and also hoping to meet up with some of Jim's high school friends that are tailgating.

Love Ya Honey

Happy July 4th

2010-07-04T09:43:00.002-04:00

Hope everyone has had a wonderful holiday weekend so far. I cannot believe it is July 4th already. I had spent some time with my family last evening, which a good thing of course.

Happy July 4th Jim, you have all kinds of reasons to celebrate!!! Love you and miss you!!!

World Cup Soccer

2010-06-26T14:41:00.001-04:00

Watching USA against Ghana, unfortunately Ghana has scored first. I will continue to root for USA, as I know Jim is doing also.

Happy Fathers Day

2010-06-20T18:11:00.002-04:00

Happy Fathers Day to my dad, over the years and now, when fix-ups need to be done around the house. (things I can't handle) Dad knows I love him very much.

Happy Fathers Day to Jim's dad, for also being such a great father to Jim, Karen and Doug. I wish I would have known somewhat sooner.

Happy Fathers Day to Jim, for being such a great role model for Alyssa. We love you and miss you. I guarantee that every day that goes by, you are constantly thought of.

I am not much of a writer, but I will try and improve upon that as time goes on.

Good Morning

2010-06-17T08:03:00.003-04:00

I woke up quite early this morning, somewhat earlier than I would have liked. I am really trying to get things back in order. I bought paint at Home Depot plus brushes etc., Jim and I had always wanted to finish the kitchen and the backroom and then begin painting the bedroom.

I still am unable to sleep in our bed, it is to difficult for the moment to not feel that person next to you. I cannot believe it will be approaching what would have been our 5th anniversary. I am especially glad now that I had kept on the letters he had sent me in previous times, they are very precious to me. It helps me go back in time when things were wonderful.

In A Relationship

2010-06-05T08:47:00.002-04:00

When Jim and I had begun to have our relationship together, it had taken some time in order to get to know each other in a domestic way. Eventually, we grew (I think) to have mutual respect and common ground together. In my opinion, when you meet your soul-mate you know it almost immediately, somehow I guess he knew it sooner than I did. It took him awhile to pursue what interest he must have found in me.

I look back upon things and I would not have traded the time I had with him for a split second. I treasure the relationship we had together as a couple.

In 2006, even after after the removal of his kidney. We had spoken of having a child together, but in 2007 as things had become difficult again, that decision had been made for us. We even had a name picked out (Patrick James), however, things happen for a reason.

Jim and I wanted to continue our lives together as a couple should. We were committed to each other and that is what we felt between us.

I Love You Jim and Thank You for being such a BIG PART of my life, Alyssa's life and of course the rest of the family included. You have made such an impact.

In Your Memory.....

2010-06-03T06:22:00.001-04:00

I know that you were with us last evening at your Alma Mater for the memorial scholarship award that Doug presented in your name. I thought it was a wonderful idea and you are so very deserving of it. I love you honey, myself, Alyssa, your mom and Doug and Kristy were present.

Doug definitely did you justice in the presentation and... it was a wonderful thing to be able to attend.

Will You Remember....

2010-05-29T16:52:00.002-04:00

Will you remember me in heaven,
as I remember you.
Will the love still be there,
as we knew here on earth.

They say in time you heal,
from some of the hurt and pain.

You have been my soul-mate,
and you still are,
even though you do that from afar.

Please know in heaven above,
you still share a very special love.

Someone whom I will love forever.

Interesting Dentist Appt.

2010-05-21T06:29:00.002-04:00

From one of the epileptic spills that I took when I was sixteen, a very severe one. There is no way to forget it either. I had braces at the time, thank goodness it helped to save my front teeth. Of course at the time it also included a root canal and I also knew that I may have to have another root canal one day, the time has come again.

I just recall how much pain I was in. So it goes.

On a lighter note, on Tuesday this week I had lunch with my mom and Jim's mom, which is a good thing and we had a very nice time. This is very important in the healing process that we get together when we can and just chat.

I know how I feel about Jim's passing and I don't entirely know how Jim's mom Alice feels, because it is somewhat different as far as wife and mother. But we talk on the phone frequently and I will always consider Alice as mom #2. There is not a day that goes by that I don't feel Jim's presence and I hope and pray that he will continue to be with me for eternity.

Marietta Day's

2010-05-15T09:18:00.003-04:00

It is a nice Spring Day and thank goodness the sun is out today because of the severe weather we had last evening. It is another day that Jim will be missed due to the occasion here in town. On a yearly basis, the town in which we live has a street fair and Jim, myself and any additional family members would walk around and check out the stands and see what was for sale and for him what was to eat.

All of us remember fondly how much he enjoyed the sausage sandwiches at the deli across the street and he would have at least two. Last year Alyssa and I had both bought fudge from two different vendors, however the fudge Alyssa bought he enjoyed much better, go figure???

This will always be a special occasion for all of us.

We will all miss you today honey and remember all the good times we had on this day.

Happy Mother's Day

2010-05-09T16:45:00.002-04:00

I know what Jim would say and I know what I am going to say. This is for the special mother's whether it be Alice, Susie, Karen, Debbie, or perhaps anyone else that we know that have shared the special ability to bring children up in the right way.

It takes a lot of patience to love and care for a child. You must have a special place within your heart to do it right. We all go through moments of happiness and sadness.

But the love that is shared throughout a lifetime cannot be measured.

Happy Mother's Day to all of you!!!

I Hope You Enjoyed Your Gathering

2010-05-07T14:26:00.002-04:00

Jim's birthday had been May 1st and a good day to have a Celebration of Life gathering. This gathering included Alice, Paul, Me, Alyssa, Charlie, Bill, Susie, Karen, Jamie, Doug, Kristy, Debbie, Jay, Jimmie(my brother), Becky, Matt, Annalie, Becky, Mark and Laura. I know Jim was with us in heart and spirit. This certainly gives everyone an idea of the impact that Jim had left in many lives and how much he is loved.

We had the gathering at Shank's Tavern here in Marietta, one of our favorite spots here in town. Under the circumstances, I hope that everyone had a good time. This is something Jim had talked about in advance, Alyssa and I wanted to follow through on.

Happy Birthday Jim Honey

2010-05-01T07:30:00.004-04:00

What can I say about the man of my dreams. A wonderful person, with a kind heart and loved by so many. We love you Jim and this special day is just for you. I know that you will be with us today and I hope that you will be looking and smiling.

My gift to you is the love I will share with you for the rest of my life. I wish for you to the happiness and peace you are so much deserving of, after what you had been through with your illness.

Please know how much you are loved and that will remain forever.

Happy Birthday Sweetheart from the very depths of me.

E-Mail April 10, 2002 from Jim

2010-04-22T10:23:00.002-04:00

Well I'm not the most approachable guy on the planet, lol I can be a handful. And well, any kind of friendships and work can be a little awkward sometimes. But it's also the place we spend an awful lot of our lives.

Even though I lived in downtown York for a few years, that was awhile ago, and I really know this side of the river; and I really don't know that side.

I'm never short on ideas. We could meet up after work and head for Bube's in Mt. Joy for a drink...listen to some music...pick each other's brains...soak in the atmosphere...and make fun of the bartenders. I could show you the back of an old hardware store I live in(it's actually pretty nice I'm just used to renovated warehouses with lofts, wood everywhere and lots of room for cartwheels). And I could challenge you to a game of nerf ball. We could bare our souls through finger painting.

Then there's breakfast at the Hershey Hotel (I got myself thinking today). And we can digest all those chocolate pastries on the drive down to Lewes...dip my big toe in the salt water. We can walk in the sand until our shins ask us to please stop for awhile. As long as we get back north to Rehoboth for maybe some soul seafood right before the sun goes down over the sound. There's a great light show at the beach every night...so much uninterrupted skyline.

But morning calls and I'm a shot down the Eastern Coast away from my uncle. I'll steal his Boston Whaler (if he hasn't sold it yet) and see if I can find that abandoned coast guard station on one of the small barrier islands that dots the coast. This time I have to check the tide charts so I don't have to swim back to the boat.

Mmmmmm...and there's a great restaurant real close to that boat launch. I saw Black Elvis there once. I kid you not. (shaking head)

Or we can just hit Bube's and take it from there. (smile)

Good Morning

2010-04-20T08:32:00.003-04:00

Mom and I going to the grocery store today to grab a few things, also Freckles needs more cat food (can't be without that) Alyssa unfortunately has some type of viral infection and has been dealing with a lack of voice. I hope she feels better, because of course I feel badly for her.

Right now, taking one day at a time as usual and missing Jim like crazy. When you lose your other half, the person that you were meant to be with for eternity, I cannot even begin to explain that is felt. He has to know how much I love him and how much he is missed by all.

Take Care All of You

Just Want To Say.......

2010-04-14T18:12:00.002-04:00

Jim, I finally went for a bike ride, it wasn't the same, but I know you were there with me. Thank you for helping to try and give me the strength to get through difficult days. There have been so many wonderful times while we've been together and we still are and always will be.

I Love You and the Special Man that you are.

Trying to Accomplish Things

2010-04-09T07:30:00.002-04:00

As I continue to try and do things, looking into driving instruction to get my license in the future, checking back into getting my accounting degree, things such as that. I know I can't push myself too much for obvious reasons. (too much of a push can cause more strain at times)

I have been doing yard work, trying to go for walks when the weather co-operates. The walks are nice, but yet I had my walking partner, however I know he was and is with me.

I want to thank everybody once again for the kindness and support they have shown me and I will always carry it in my heart.

Happy Easter

2010-04-04T08:43:00.002-04:00

Today will be a difficult day, Jim and I had normally taken on Easter Dinner ourselves, but this year would be too emotional for me to handle that. Thank goodness on Jim's side of the family last weekend, Karen and Jamie handled it and today, my sister Debbie and her husband Jay are handling it.

Jim had always been so set on Groff's Ham in E-town, which to everyone as understood. We would work together to get things accomplished and everyone else would normally bring a side or dessert. I miss those kinds of things so very much, but I hope that next year I will be able to handle it once again.

I love you Jim and I know that you will be with us today and that you will be happy with the turn-out. It won't be the same without you honey.

Honey, I Love You!!!

2010-04-01T10:15:00.002-04:00

Sweetheart, I miss you and I love you so much and of course the rest of the family feels exactly the same. I know that you looking out for us and watching over us, but I know that you are in a much better place and that part I am thankful for.

Your memory will live on in the hearts and minds of so many people. Your perspective and the fight you put forth is an inspiration to so many. I will continue always to live my life in rememberance of you and what you have meant to me.

Palm Sunday

2010-03-28T07:45:00.003-04:00

Myself, Alyssa and Charlie are fortunate to share the Albert Easter holiday today. It however will be difficult because Jim and I would typically host Easter ourselves. I look forward to being with Paul, Alice, Karen, Jamie, Heather, Doug and Cristy. They will always be my family and that will never change.

As much as I miss Jim and will always love him for everything he has been and what he also meant to everyone else. He will be with us today, as hard as this is.

Thought Provoking...

2010-03-26T09:49:00.002-04:00

I can tell all of you (and you already know) that Jim has had such an impact on my life and I can only hope that I had done the same for him. Since we have been together, he has made me a better person as far as being in a decent and solid relationship.

I will always be in love with Jim and no one else will ever be better suited for me than Jim. I also know that Jim along with my other relatives that I have loved and lost will continue to watch over me and also those that remain here with me.

We will watch, care and love each other forever.

Fond Memories....

2010-03-25T10:00:00.002-04:00

I will continue to add to this blog because certain things I have remembered that are laughable about Jim and his funny way of approaching me quite some time ago, are worth every moment (before we were together):

One of his questions had been, How I felt that a roll of toilet paper was to be over or under. (I guess this was his way of factoring compatibility)

In the beginning, he had e-mailed many romantic letters to me that I have never gotten rid of, because I knew that a relationship may develop.

Something I Have Really Never Done.....

2010-03-23T17:01:00.002-04:00

My daughter Alyssa, her husband Charlie and myself were going to only go to dinner as a late birthday present for Charlie (this past Sunday). However, I received a call that morning from them to see if I wanted to go Hollywood Casino and I said sure why not. (not something I plan on making a habit of)

So we ventured up there and I had basically no clue what I was doing and the first slot machine I sat down I hit, needless to say I was shocked and then I hit it a second time.

At least I pretty much knew when to stop as tempting as it is to continue, but we had a good time and that is what mattered the most.

Everyone have a good one.

Beautiful Day

2010-03-20T11:36:00.002-04:00

This is just the type of day that Jim would have enjoyed, but I know that he is from a different perspective. He would have wanted to go for a bike ride or a walk. He always enjoyed a pleasant day with an abundance of sunshine.

I will always feel his hand in mine when I do take walks or side by side on the bikes. I remember we began to play tennis together, he didn't realize the competition would be tough (although I couldn't beat his serve).

We will always be so well-matched for so many reasons and the love and respect that I have for him will live on forever.

My Take on Christmas 2009

2010-03-18T07:36:00.003-04:00

Since things were somewhat difficult we chose not to get a Christmas tree and use the Christmas Ladder (that belonged to Jim's grandfather). Sometimes I think things happen for a reason, I mean this in the sense that it was supposed to be that way, something that he loved very much.

The weather at this time was also not very cooperative, but we managed to get to Myerstown to be with Jim's family even though we were slightly late.

It may seem strange talking of Christmas, but I am trying to take into account some strange nuances that tend to occur.

Good Morning

2010-03-17T06:25:00.003-04:00

After taking into consideration how much this blog meant to Jim and the others who have read it, I am going to try and maintain it the best that I can. What I would like others to consider doing is writing in the comments, either the stories they have of times spent with Jim or the impact he has made in life.

I can personally tell you (and everyone probably already knows this) he had a big a heart and truly cared about those that surrounded him.

Please tolerate me as I try and get over the hurt of his passing (as all of us are), all I know is will try and continue to make him proud of having had been married to me.

Also, Happy St. Patricks Day

My Cancer Warrior....

2010-02-22T09:50:00.001-05:00

Well Jim has been called to heaven today by the angels. At about 4:30 am Monday, February 22nd he left our lives, but what wonderful memories he has left with all of us. I will never forget his battle with cancer and never wanting to give up, it just became to much for his body to handle. I am certain that he looking down upon us and saying please don't cry, just remember me as I was.

Update

2010-02-15T19:28:00.000-05:00

One of the most difficult decisions I have ever had to make. My husband was placed in hospice care today, due to his aggressive cancer. He has touched the lives of many people and the love he has shared with so many. My best friend will always remain in my heart. I already know that prayers will be sent our way ,I ...will always love him for the person he is and how he has affected my life, in such a positive way.

Test Results......

2010-01-27T05:59:00.002-05:00

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

2010-01-22T13:56:00.002-05:00

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

2010-01-15T07:07:00.004-05:00

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....

2010-01-13T11:29:00.003-05:00

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.

2010-01-11T04:35:00.002-05:00

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

2010-01-09T04:38:00.002-05:00

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!

2010-01-08T05:46:00.003-05:00

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

2010-01-07T05:58:00.002-05:00

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

2010-01-06T09:13:00.002-05:00

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!

2010-01-05T05:36:00.002-05:00

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

2010-01-04T07:25:00.002-05:00

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

2010-01-02T05:54:00.003-05:00

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.

2010

2009-12-31T09:36:00.002-05:00

Can you believe it's almost 2010?

Have a great new year everyone!

Feeling Inspired

2009-12-30T07:46:00.002-05:00

We had a wonderful Christmas. Then the day after we got three bills from Lancaster General Hospital which were all wrong. According to these three bills we owed thousands of dollars.

It wasn't a big shocker. We go through this all the time. But three of them at once? Just one day after Christmas? Ugh.

I told Barb that the weekend would still be a holiday to me and we could deal with it Monday.

I also made a commitment to myself to start really addressing my health issues on Monday. I wouldn't rest until I could find out what was causing every pain, every problem, everything. If I had to find new doctors, new drugs, whatever, I was going to do it. There were too many things going on that I just didn't understand or have any explanation for.

Well Monday I started with the bills. I decided to address one bill at a time and follow them through to resolution. The first bill we've already received twice already. Both times it was incorrect. And both times I was told to rip it up and throw it away. But the bill just keeps coming.

It seems, from talking to LGH and Aetna that someone at Aetna thinks that I have a maximum benefit on my policy and that maximum has been met. But everytime I call Aetna they tell me that is wrong and I do not have any maximum benefit on my policy. But the issue just coninues to go on.

I just wish that I could gather the appropriate parties from both LGH and Aetna and sit down and resolve this once and for all.

I'm like this little guy translating messages between two giant companies. Why can't they just talk to one another?

Then right in the middle of my struggle on Monday some problem occurred in the LGH billing office and they closed for the day. What? Ugh.

Dealing with this alone will probably take the rest of the week.

Brrrrr

2009-12-29T05:13:00.002-05:00

Some people don't mind this cold weather. Some even like it! Weirdos!

My body has never liked cold weather. I just run from one warm place to another, shivering and complaining along the way.

It's just been me. It's just been my body. I don't like it.

We've all seen guys out in this stuff in short-sleeve shirts. They're usually big bears though, with more body mass and more body hair than me.

It's in the 20s here this morning. It makes me shiver just thinking about it.

So why am I here?

Well I considered flying south, and staying south many years ago. But I concluded that this is my home, and always will be my home. My family is here. I have friends here. I have many business contacts here. Here...I am established. Besides the cold weather a few months each year, this is where I am happy. This is home.

We don't have earthquakes here, or wild fires, or mud slides, or hurricanes. It's pretty mellow.

We have a lot of neat history here too. I love to drive Pennsylvania back roads. They were built before automobiles so many simply follow property lines between corn fields. You can be driving along and "whoop" all of a sudden there is a 90-degree turn.

There are certainly some beautiful areas of Florida but the state grew so fast that most of it seems like highways connecting housing complexes and industrial parks. There just isn't enough character or history.

But there is sunshine. There is warmth. I would love to be there now. The weather dude on TV just said that it might reach the 30s today...might? Ouch. If I open the front door my sinuses will let loose. You might want to invest in Kleenex the next couple of months.

(sniff)

It's home though. I'll just hunker down, stay warm, and wait to hear that Spring training has started in Florida.

The Party is Over

2009-12-28T05:41:00.002-05:00

After much frustration with my health insurance company I've learned that it was in my best interest just not to interact with them at all.

But on December 26th I received three bills from the hospital, all wrong, about $15,000 wrong. Merry Christmas to me.

One of these bills I've received twice already, and I've resolved it twice already. Last time I addressed it with my insurance company they told me to throw it away.

They're always getting things screwed up. I often wonder if any other business could stay in business making this many mistakes. The hospital also complains about their ineptness. But they don't have to worry about it because I sign forms promising to pay them if my insurance company doesn't.

What is it like being the mediator between two giant companies? It stinks! I wish I could just get representatives from both companies in a room and resolve it right there.

But today I'll be the little guy, the little guy with advanced cancer, making endless phone calls throughout the day, beating my head against a wall, just to get what should have been anyway.

Ugh. What a way to start the week.

Christmas Hangover

2009-12-26T06:01:00.002-05:00

I was going to dive back into politics this morning. But it's such a tough subject after such a beutiful Christmas, I think I should put that on the back burner for awhile.

Barb and I had a great Christmas, with each other, and with both families. It was great to see Barb's nephew Ellis, and my niece Heather filled with such child-like Christmas enthusiasm. It made me smile from ear to ear and brought back my own childhood memories.

Ellis was so anxious to open his presents I thought he was going to pee his pants. He's way too smart for that though. I watched as he tried to play every angle he could possibly think of to convince his Mom and Dad to let him start. He just couldn't wait. He was going to burst. But he behaved himself.

When the moment finally came he was ripping and tearing. He was really hoping for this quite large plastic dinosaur. "Red Spikee," he called him. It was big! It had a battery pack that could be recharged and the remote control (yes the REMOTE CONTROL) required it's own batteries. It talked. It moved. And I didn't get to see it in action because the main battery pack took until around midnight to charge.

As soon as he saw what it was he had the hugest smile and just started jumping up and down and shouting, "Red Spike Red Spike!" Red Spike!"

Oh no, "some assembly required. This would require help from his Grandpa and a little more patience.

My brother reminded me of how impatient we were at that age. We were given a specific wake-up time, which of course we ignored. But we didn't dare sneak out of our room to peak at the presents in fear of the wrath of Santa.

We would peak our noses into our parents' bedroom and whisper, "Is it time yet?"

"No. Go back to bed," was the most frequent response.

We developed a strategy. I could lay on floor in the hallway with my big toe still in my brother and I's room. Then my brother could daisy chain off my exentended arms, and then my sister could stretch out from my brother's arms. This way we were "technically" still in a bedroom we rationalized.

My sister would peak at the tree and all the presents and report to us her findings. We really didn't gain much knowledge...really none...from this we could only tell that there WERE presents.

Finally it was time and we knew it. We stormed my parents bedroom and dive-bombed onto their bed.

"OK. OK," my Dad would concede, begging for peace. My parents would demand just a couple of minutes to wake up, maybe get something to drink, get themselves situated to watch us goofballs. And there it was.

My presents were to the left of the tree, Karen's were to the right, and Doug's were around the fireplace. Karen liked to rip and tear and was done in three-seconds. I was slow about it and liked to watch everyone else. Doug was somewhere in-between, always logical.

One of my favorite gifts this Christmas was being able to watch Ellis, and Karen and Jamie's daughter Heather. To see their unbridled exhuberance and genuine excitement was a treasure to behold.

Everyday is Christmas

2009-12-24T07:21:00.003-05:00

I have been giving out early gifts. I just can't control myself.

This morning Barb turned the tables on me and hit me with an early gift. It was an electric razor. I haven't used one since I was around 16. I think she's trying to tell me something. (smile) Thank you Barb. I love it.

I've always been a little different in my approach to holidays. I always felt that if I wanted to celebrate the birth of Jesus that I could, and should, do that on anyday of the year, anyday I wanted to. I pretty much feel that way about all holidays. I don't need to wait for Valentine's Day to tell Barb how much I love her. I don't need to wait for Mother's Day to tell my Mom how special she is to me.

I try to remember the life of Jesus everyday. For me, His life is an example for me to try to live up to. Of course I can never fully live up to the example that Jesus has set for me. But it has been important to my life to have his life as a guide.

Even from his birth he was teaching us important lessons. Here he was, the king of kings, born into poverty with nothing, surrounded by farm animals and the love of a mother and father.

It may not involve boxes of chocolates or fancy jewelry, but I will celebrate the birth of Christ everyday.

Merry Christmas Everyone!!!

Christmas Makes Me Think Of.......

2009-12-23T05:54:00.002-05:00

Goofy kid stuff such as walking on my dads back when I was a kid, to get it loose for him. Also, hearing the story of when I was little when my dad use to hang me from above the door and let go and I would just hang there, I guess that was my arm strengthening exercise. I used to have my brother and sister sit on my feet and I would shoot them across the living room, that was fun, I don't know if I could do that anymore (lol). (I know I can't write like my husband, but it's funny stuff)

I miss both sets of grandparents very much and the things we used to do with them on the holidays, but that is what good Christmas' are all about.

I certainly hope everyone has a wonderful Christmas holiday and New Year.

There will always be tons of good memories past,present and future.

The Freckles Claus

2009-12-22T06:11:00.002-05:00

Barb had bought Freckles a Christmas present. It was a strange purple thing. It kind of looked like a squid or an octopus.

For the past week we converted our dining table into a gift wrapping station. Freckles' present was in a plastic bag, in one of those hard plastic molded packages that are impossible to open. Everything was right there at the wrapping station. Our wrapping has been very productive this year.

Quick wrapping is crucial with Barb and I in such close quarters. I would have it any other way. I love hanging out with Barbie. But it can create challenges in trying to keep gifts secret. So as soon as the packages come in the door, I've been wrapping them.

Yesterday I woke up first and made a pot of coffee for Barb, and fed Freckles. I could tell that Freckles was a bit distracted and I was afraid he had gotten sick somewhere. He's pretty good at bringing our attention to these kind of things. It's not a great way to have to start the day, cleaning up after Freckles.

Through my sleepy eyes I could tell that Freckles had made a mess. But I had to squint and try to look closer. This wasn't a normal Freckles' mess.

I could tell that Freckles had been into the gift wrapping station. There was wrapping paper, bows, and stuff, all over the place.

Right away I said to myself, "I'm going to save this one for Barb."

Not long after Barb stumbled down the steps on a beeline towards the fresh pot of coffee.

I said to her, "You might want to take a peek on the other side and see what Freckles did."

She gave out a groan, expecting a random display of cat vomit. But it wasn't Freckles' normal mess at all.

Freckles had found his Christmas present and was doing everything he could to get to it. There was shredded paper and garbage everywhere.

"You think I should just give it to him?" Barb asked.

"I think it would be cruel not to," I answered laughing.

The strange purple toy was filled with cat nip. Freckles has not stopped playing with it sense. He's going nuts over this thing! I'm watching him play with it right now. I can't remember seeing him this excited. That must be some strong cat nip!

It's Beginning to Look a Lot Like Christmas

2009-12-21T05:43:00.002-05:00

It's kind of hard for me to do things on the spur of the moment. I never really know how I'm going to feel from morning to morning. The more I more I know about something ahead of time, the more I can get ready and plan for it.

You know, for me it's about the right mix of drugs at the right times, the right amount of naps also at the right times. I'm a pain in the butt. If I need to do something on the spur of the moment, well chances are it won't go real well.

The Albert family Christmas WAS planned for yesterday in plenty of time. I was ready! Or so I thought...

By the time we went to bed Saturday night there was already 10-inches of snow on the ground, a record for December snow in Lancaster County. In York County a snow emergency was declared and the only vehicles seen on the streets were snow mobiles.

Driving any distance at all has been tough on me lately. I can drive errands around town or neighboring towns. But for some reason, traveling any distance creates a lot of pain for me, although I do think that it's getting better.

So Alyssa and Charlie kindly agreed to drive Barb and I to Myerstown on Sunday. But they hadn't signed up to drive through a foot of snow.

Barb and I discussed the situation Saturday night, staring out the window at the endless snow, and we concluded that we'd make the final call on Sunday morning.

By the time we woke up the official word for this area was 10- to 16-inches. We decided that we would stay home. It just wasn't worth risking anyone's neck over. Barb spread the word, and now content with this decision, I went for a nap.

When I woke up from the nap Barb was talking to her Mom, and her husband Bill felt very confident that he and their Buick could handle the roads just fine.

Now this was different. I wasn't going to pressure anyone to drive through this mess. But I've been told that he enjoys it. And I already know that he's a good driver.

I called my Mom and told her that we were planning on making the trip and may be a little late. Barb called the kids, but they had already committed themselves to not going.

So had we! So we whipped ourselves together, jumped in the Buick, and headed for Myerstown. "Over the river and through the woods..."

We stayed on main roads and it really wasn't all that bad. With my Dad being home now it was really nice to have everyone together!

And a BIG, HUGE, GIGANTIC THANK YOU to Barbie's Mom and Dad for making it all possible!

So Much for a Green Christmas

2009-12-19T07:23:00.002-05:00

Ever since I can remember, ever since I was a little tyke, I didn't care for the cold weather.

The golf course we lived next to was one of the best places to sled anywhere around. It was very, VERY hilly. That I enjoyed.

But I've always had problems with my sinuses in cold weather. The rest of the year they were just fine. But come cold weather, after one or two steps outside I would be reaching for the tissues.

Coming in from a lengthy sledding session on the golf course, my Mom would try to strip off my many layers of wet clothing as two snotscicles hung from my nose.

This morning I peaked out and there was a good dusting everywhere. That was three-hours ago and now it's snowing even harder and everything is covered solidly in white.

Is it pretty? Sure, while it's coming down.

But soon all the pretty white snow will be different shades of black. A black, slushy, icy, melty mess, and in little Marietta there is just nowhere to go with it. All we do is try to push it towards the drains on the street and wait until it melts into the river.

I've been particularly interested in this storm because we have planned to travel to Myerstown on Sunday to celebrate Christmas with my family. I have been really looking forward to seeing everyone.

I've had my fingers crossed hoping that the storm would track south of us. That doesn't seem to be the case. It looks like we're going to get slammed. Ugh.

I didn't make the family's Thanksgiving gathering because of the condition I was in from the drug dose I was then on. Basically I was awake for about an hour-a-day.

Now I feel much stronger. But it doesn't look good. We'll see. Either way, Barb and I are still always smiling in Marietta. What the heck...we have a big, giant box of assorted chocolates! (smile)

I'm Dreaming of a Green Christmas

2009-12-18T06:14:00.002-05:00

I went to sleep last night to news that we could expect one- to three-inches of snow by the time we wake up Sunday morning.

I woke up this morning to news that we could expect eight- to twelve-inches of snow by the time we wake up Sunday morning.

(sigh) What a mess. My family is planning on celebrating an early Christmas on Sunday. I am really looking forward to seeing everyone. Or at least I was . . .

Yeah, I know. It's pretty and it's all white and fluffy. And in no time it's slushy and all black from traffic, and it's just a slippy, slidey, huge mess.

These are the days when I wonder why I'm still here in Pennsylvania.

Well I guess that all areas have their drawbacks. After all, Florida does have bugs the size of my arm.

Maybe we could just change the date we celebrate Christmas? Maybe some time in June? Would that work for everyone?

Minor Miracles

2009-12-17T10:33:00.002-05:00

Now I've never been a big believer in miracles. But I do believe it's certainly possible. And the way the last few weeks have been going my belief in the unexplained is just getting stronger.

First we came home and Barb said "Hey! Our neighbors are in our backyard."

They were out there trimming our trees and brush like crazy. Why? I have no idea.

Our neighbors have property in Berks County and are often there. And when they are in town we rarely see them. Now suddenly, out of nowhere they were trimming all of our trees and even mulching all the debris.

I was extremely thankful because this is something I've been concerned about getting done. I was so thankful that I didn't care to ask them why. I just kept my mouth shut except saying over and over and over "Thank you. Thank you. Thank you."

Not long after another one of our neighbors showed up at our back door and asked us if we would consider having him rake and bag all of the leaves in our yard. Dumbfounded I said, "Of course." He did a great job. It was another big job I was worried about getting done in my condition

Soon after the yard, our neighbors hired painters to paint the outside of their house. Our neighbors had a little problem with the way the painters handled something and she negotiated with them to paint the back side of our house. It's not a very visible section of the house. But it has been something else on our list of things to do.

Presto, it was done. Unreal, I couldn't believe this. First it was the trimming of all our trees and bushes. Then it was raking and bagging of all of our leaves. Now it was painting one-side of our house. Where would it stop?

Well it hasn't stopped yet. Yesterday a gentleman came to our back door asking if he could pave our parking spaces. He had just finished another project about two-blocks away and he could give me a low price since he already had all the equipment, materials and support here.

It's yet another item on our list of things we wanted to do to this place, this old house.

They're out smoothing out stones in the parking area right now.

I don't know.

Stuff like this just doesn't happen. Does it?

Here We Go Again

2009-12-15T06:10:00.002-05:00

I've enjoyed my small holiday from the harsh cancer drugs. But the holiday ends today as our "team" (Susan, Barb and myself) travel to the cancer center to have an injection of Interferon.

At least my weekly intake of Interferon is not going to be as large as before. Rather than three injections a week I will now switch to just one injection per week, or one-third of what I had been on before.

I'm anxious to see how the body reacts to all of this. You never know. I think it's pretty obvious, from past experience that it won't make me feel stronger or better in any way. But you just never know, predicting cancer is like predicting the weather, you just never know.

I've been off any kind of cancer drug for just over two-weeks now. I definitely have felt better. I've felt stronger. But I haven't exactly felt like my old self, especially after 3-plus years of being on constant chemo of one shape or size.

Early Gifter

2009-12-14T06:47:00.002-05:00

Yes. I do have a problem. Admitting the problem is the first fence to climb towards being able to correct it.

I am an early gifter.

I can't help it. It brings me joy. I love giving. Getting? Well there really is no comparison, I'd rather give than get - anyday.

I'd make a terrible rich person. I find no joy in just hording money. I just don't. I feel responsible to ensure that myself and my loved ones are taken care of. But giving is just always more rewarding to me.

Last year beginning in the first week of December, I started handing out presents. Oh, I saved some for Christmas morning. But I was "early gifting" with a pretty robust nature.

One thing I heard a lot was "Ooooo, that's so nice. Thank you. NOW STOP GIVING EVERYTHING OUT EARLY!"

So I joined an online support group for early gifters (not really :)

I have been doing much better so far this year I believe. So far I've only given our three presents. Hmmmm. That might not be better. But I'm trying!

The gift that told me that I'm doing the right thing was something that even surprised me. When I see peoples' faces when they see this gift it just sums up all the reasons why I'd rather give than get.

As soon as it came to the door, I knew I needed to give this to Barb right away. I plopped on my recliner with this HUGE thing on my lap - smiling from ear to ear. I waited for her to come back down the steps and when she saw what I had on my lap her chin dropped to the floor and she broke out in one of those uncontrollable "giggle smiles."

It was the biggest box of chocolate either of us had ever seen! It was 2.8-pounds worth in a GIGANTIC box. I took a couple pictures with it sitting on Barb's lap. I'll try to post one tomorrow.

So far, everyone has agreed, Barb's Mom, Alyssa, Charlie, it is the biggest box of chocolate anyone has seen.

Each time someone has dropped by they've been shocked by its massiveness. We think there are at least three layers of assorted chocolates, but there may be more.

I've enjoyed the expression on every face that has seen it for the first time. It's so much more rewarding to give than to get.

Wait, wait, wait, I'm starting to feel like giving out another early gift. OK Jim, take a deep breath, easy now big fellow...

Back and Blogging

2009-12-12T05:41:00.002-05:00

I woke up yesterday and there were weird lights bouncing all over the bedroom, coming from the TV. At first I thought I was somehow in the movie "Poltergiest."

But I quickly shook that thought off, pinched myself to make sure I wasn't still alseep, and wondered downstairs.

First thing in the morning, every day, I make my wife a pot of coffee and feed Freckles. The day starts off at its best when the coffee maker can be pulled squeaky clean from the dishwaser and I don't have to clean it up while I'm still half-a-sleep. Also I like to see Freckles dish empty or nearly empty just to see that he's eating well.

Well Friday morning the coffee maker was sitting on the counter with yesterday's coffee and grounds, plus Freckles had gotten sick in three different places in the kitchen.

He's OK. It just looked like he ate a little too much. Or perhaps he ate another spider. Yes, a spider, I've caught him snackin' on a couple over time.

So it wasn't my favorite start to a day on Friday. But I set up Barbie with her coffee. I set up Freckles with his food and water. And I hit my recliner with a glass of ice water in hand.

I turned on the TV and there it was, poltergiest again. I checked a few channels, flicked around, and it wasn't right all over. I checked the internet and at best I had a real shaky connection. I checked the phone and we had no dial tone, and then we did, and then we didn't.

No biggie, I thought to myself, we can live Amish for awhile. I don't mind that at all.

Barb called Comcast she woke up and got a cup of coffee in her. After she waited about 30-minutes to talk to a live person that person told her they'd be out to look at it somewhere between 9 a.m. and 11 a.m. That's not too bad, I used to remember when they would tell me anytime between 9 a.m. and 4 p.m.

About 9:30 a.m. things around the house started working again. Evidently the strong winds we had the night before knocked something a little loose and more people than just us were experiencing "data loss" and "service interruption."

But I was already into my daily schedule of activities and the time I usually set aside to try to blog something intelligent (or silly) had passed. So, sorry I couldn't update on Thursday's visit with my oncologist.

I thought this would be a fairly predictable meeting, and for once it actually was.

The doctor had no problems with my "drug holiday" from Interferon. Well actually he was the one who originally suggested it. Being away from Interferon has definitely made me feel better, slowly and surely better. He also suggested that we consider going back to Interferon on a lower dosage, either half a dose three times a week, or a full dose once a week.

Barb and I had already discussed this and we're going to go back to the Interferon once a week for a full dose. The doctor added that consistency wasn't in taking this drug wasn't as important as it is with typical chemo. So if I wanted to just take off again over Christmas week, that would be fine.

He gave me a full physical exam as he always does. He said I checked out good. He didn't see any problems. All of my blood tests were strong, and one result was even up a little. He said that he thought at the least that I was "stable."

So I'm still dealing with some pains, but they all seem to keep getting consistently better. Next week we'll start the lower dosage of Interferon and we'll see where things go from there. It's always an adventure!

Thanks for all the continued love and support. Believe me, I feel it!

I always thought that there were some pretty messed up people in this world (after all that's what we see on the news everyday). But my sickness has taught me that there are much, much, much more wonderful people in this world. Thank you!

Going to See the Doc

2009-12-10T05:37:00.002-05:00

I always try to get my act together before I go to see the oncologist. He is a very sharp, intelligent guy, so I feel like I have to prepare to meet him so I can get the most out of the meeting.

I think today's meeting will be fairly predictable. But then I almost always feel that way and there always seems to be a surprise.

Today there isn't any scans to review or discuss. Todays meeting will mainly be about drugs and chemo.

As always he'll come into the treatment room, shake our hands, and ask us how we're doing (Barb will be with me). He'll sit down, open up my chart, pull his pen from his pocket and ask me what I would like to talk about today.

Well, I'm going to tell him about the "drug holiday" I took, then I'm going to tell him that I'm ready to start taking the nasty Interferon drug again.

I'll ask him when he's planning on doing a scan again to see what, if anything the Interferon might have done. Then based on the results of that scan I wish to talk to him about whether he would consider prescribing a new kidney cancer drug.

I'm going to mention that I have had some pain.

And that I'd like to discuss overall general health.

Then he'll take off from there. He usually brings up something I never expected. He always gives me a solid physical exam.

The "drug holiday" was originally his idea when he learned how rough the Interferon had been on me. I've taken a lot of harsh drugs over the past three-and-a-half years. Nothing was like this though.

I've been off the Interferon for about two-weeks and much has improved.

I know the doc has this strict three-month time frame he prefers to adhere to between scans. I'm anxious to see what this nasty Interferon has done. But I'm willing to wait until what we expect to be early December for the next scan.

As far as pain goes, the harshest and strangest pain I have right now is in my left calf. It's had me hobbling around at times. But it's odd. It's constantly in the same part of my calf, but it moves around from side to side to back. I'm really hoping he might know something about that.

I have this weird suspicion that it might be from the La-Z-Boy, as strange as that may sound. During the bad, bad, bad Interferon days I was pretty much planted on the recliner. Being so tall, my legs hang out over the end of the recliner. The last place my body touches the recliner is right where the pain is in my calf? I don't know.

Barb and I have a pretty strong idea of how things will go today. We'll discuss getting back on the Interferon, one full dose a week, rather than three full doses. We'll discuss the left calf and maybe decide to do a much more affordable x-ray. And we're hoping he will bless the new cancer drug just approved by the FDA if Interferon proves not to be working.

Wish us luck...

Present and Past

2009-12-09T05:36:00.002-05:00

To all of those who haven't even begun buying presents for Christmas, I am sorry. I am truly sorry. I know how you feel.

But I just finished all of my shopping this morning. DONE!

I used to be really terrible at this stuff. Being in a mall on the day before Christmas, fighting the crowds, mainly other single young men.

I remember one-year the mall was so full I just went to the emptiest place and bought an $80 wallet for my Dad, which was way overpriced and he didn't like it since he broke in his existing wallet perfectly over the past 20-years. It was already formed to the shape of his butt perfectly.

But at least I got away from the zoo and was covered on my presents.

I'm somewhat known for giving zulu masks from Africa, or something fairly original. I'm just bad at this stuff.

But two things have come along through the years to take me from a miserable Santa Claus to a respectable one - first the internet, and then Barb.

The internet became amazing. I could shop from my recliner! No traffic jams to fight through, no crowds, no crazy people - I became one of the earliest shoppers on the internet. With the ability to relax and browse without a kid barfing on my shoe made a huge difference to me.

The second thing that made me a stronger shopper was Barb. She's added so much to my life in so many way.

Like yesterday she asked me if I knew how much I've spent on Christmas.

Hmmm. It's a good question. "I don't know exactly," I replied.

I got "the face," but with a chuckle at the end.

"Do you know what's in your checkbook?" she added.

Laughing, I said, "I don't have any idea."

She straightened me out from there. I know everything now.

Barb offers me organization, structure. My shopping wouldn't be done this early without her. And I know exactly what I have in my checkbook too. Woohoo!

Oops. Sorry to all you guys who haven't started yet.

Two Cool Teal Armbands

2009-12-08T05:28:00.002-05:00

I had to have some bloodwork done yesterday. I'm in there so often they all know me well.

Barb joined me, which I always greatly appreciate. We had to pick up a 20-pound bag of food for Freckles. Whew! I think we could get 20-pounds of ground beef for less. For a cat that sleeps around and has a bad reputation, he sure is one spoiled cat.

I've worked out a gameplan over the years to get my bloodwork done as quickly as possible. I need to go around 9 a.m. to 10 a.m. In the early morning there are many people seeking bloodwork before they go to work. Around lunch time there are many people trying to get their bloodwork done during their lunch break, and worse yet the nurses start rotating into their lunch breaks so it can get pretty backed up. Mid-morning is the best time I've concluded, and yesterday things did go pretty fast.

When we're waiting Barb and I do crossword puzzles. We purposely get pretty easy crosswords to make us feel smart. (smile) We had gotten through about half a crossword when I was called back.

A young African-American gal welcomed me and introduced herself. She was a new nurse at the center. I hadn't met her before.

She introduced herself and asked me if I would mind her taking my blood because she is a student.

I didn't mind. If this was surgery I'm sure I would have protested. But this is just a needle in a vein and a little of my blood in a vile. I'm all for helping learning of any kind.

She studied my left arm hard, found a spot she liked and rubbed it with alcohol. She got her stuff together and went for it. I noticed one of the experienced nurses come over to look over her shoulder.

I've done this so many times I can almost always tell when someone got the vein, and when someone missed. She missed. She started digging around a little bit. That never works, either you hit it or you don't.

The experienced nurse offered to step-in and help. She recommended pulling the needle back out, saying that the vein was "blown out."

The student nurse looked sad, disappointed in herself. I tried to console her.

I told her that I remember when the nurse who stepped in to help just started and she missed more than hit. She was terrible. Now she's a pro. She's a rockstar! She is so smooth and gets me everytime on the first try and I often don't feel a thing. I told the student nurse to hang in there, keep practicing, let her know that she'll get it. I tried to reassure her.

The experienced nurse switched over to my right arm, and as expected was a real pro about it, smooth, in and out, barely felt a thing. I used to tell Barb about her and how bad she was. She would leave bruises all over my arms until she would finally get me. Now she never misses. She never even leaves a mark.

She fixed me up with a little gauze and this funky, flexible teal colored tape. We exchanged small talk.

I said, "If I don't see you before I hope you have great holidays."

She quickly turned and said "I hope you have a Merry Christmas."

I smiled and added "I hope you have a Merry Christmas too!" I knew she was a gal of strong Christian faith. We had discussed it before. She obviously didn't want anything to do with a politically correct holiday. She wanted a day to remember the birth of God's son, our savior. That works for me.

I took a look at my teal armbands wrapped around both my arms, around the elbow. They were a little tight, but looked kind of cool. I felt like I was the third-string quarterback for the Miami Dolphins or something.

I dressed back up in my 12-layers of clothing (I do not like this cold weather). Then I pulled Barb away from the crossword puzzle and we jumped in the FJ and drove back home.

Two seconds in the door I asked Barb to cut off my teal armbands which she kindly did.

Life of a Sneaker

2009-12-07T06:05:00.002-05:00

When I was in high school I would not wear anything but the Nike sneaker to play basketball. It was the best sneaker around. There was a great story behind the company. I supported them fully. Before every season I asked my Mom a new pair of Nikes. It wasn't a problem then, they didn't cost $100 a pair. Actually I think they were around $20 a pair.

Nike had an interesting history. Started by two friends in Beaverton, Oregon, they first imported and resold sneakers made in Japan. Then one of the young partners poured melted rubber into a waffle iron and invented the first Nike sneaker.

I thought it was interesting to learn that the owners of Nike paid a local grahic artist $35 to a student at Portland State University to design the "swoosh" logo. Years later, after experiencing much success they through a luncheon in her honor and presented her with an unknown amount of company stock.

I liked the idea of an American sneaker on my foot. I was definitely a loyal customer.

But things went downhill.

A buzz developed around the Oregon factory that the workers were planning on starting a union.

The Nike owners immediately started a plant in South Korea and closed down the Oregon plant as soon as the new one was ready.

Then a few years later the government of South Korea passed a law allowing workers to form unions. Nike didn't wait for that to happen. They built a factory in some third-world location. I think it was Indonesia, and they moved again.

Now I always pronounced Nike exactly as it is spelled. I mean after all, how do you pronounce "bike." You don't say "bikey" do you?

Nike discovered fame and popularity, and they discovered sponsorhip, giving famous atheletes millions to promote their brand. It wasn't about the quality of the product anymore. It was now about branding, marketing, and making millions and millions.

I was gone. The only sneaker I would once buy was now the last sneaker on Earth that I would touch.

I think I did have a warning as a senior in high school that I should have paid more attention to.

We had a HUGE basketball playoff game at Lebanon High School. I forgot my sneakers. Someone was given a key to our house and sent running to Myerstown to try to retrieve my Nike sneakers. In the meantime the school had dug up a pair of high-top, canvas, Converse All-Stars. You know, at that time it was a very old-fashion style sneaker.

I played in the canvas sneakers. I had one of my best games of the season.

I should have known then. It was a sign. (smile)

The Christmas Ladder

2009-12-04T05:50:00.003-05:00

(I have blogged about this previously - but for those who may have missed it...)

Many, many years ago my cousin and I stopped in to visit a friend. He was an eccentric genius. He was one of the smartest guys I ever met. But he was very anti-social and often kept to himself.

He did have a roommate, a ferret. I would sit on his couch watching my ankles, waiting for the long, skinny rat to shoot out and take a bite out of me. It never happened. I would just see a little shadow sprinting from one hiding place to another.

It was a couple weeks before Christmas and my friend had a tree with lights up in his living room. Well, it wasn't exactly a tree. It was shaped like a tree. It looked like a tree, especially in darker conditions when the tree was lit. But it wasn't a tree. It was a step ladder.

What?

Of course I had to ask, "What's with the ladder?"

He explained to me how he came to this idea. It was shaped just like a tree. He would not have to spend money on a tree that would drag needles all over his place. He would not have to water it every morning. He would not have to kill a tree and could feel eco-friendly about his choice.

I thought it was strangely genius.

Soon I had my own Christmas Ladder. I had an old woooden step ladder that was my Grandfather's. It was beat-up, had paint all over it, and really was safe to use in a traditional sense. But it had a lot of sentimental value to me.

I bought some lights and a couple ornaments and soon the first Christmas Ladder was proudly in place.

It became a tradition. In over 20-years I have never failed to set-up the Christmas ladder.

When Barb and Alyssa became part of my life I introduced Alyssa to my Christmas ladder upon our first holiday season together. She didn't seem to appreciate the tradition quite as much as me.

In fact Alyssa called her grandma to tell her that this guy was nuts. He was stringing lights on a ladder and didn't seem to have any plans to get a tree.

But I wouldn't let a Christmas go by for Alyssa without a real tree. I was just playing with her. Oh the Christmas Ladder was still displayed proudly. But I went out and bought a real tree as well. She sighed with relief. As long as Alyssa lived with us we always put up a real tree and a Christmas Ladder.

After we moved to Marietta I woke up Alyssa pretty early one morning. I told her that we were going to have the Christmas Ladder lighting ceremony and would like her to do the honors. With sleepy eyes she looked at me with a crooked smile. She plugged in the lights. Barb and I oooohed and awwwwwed with delight.

Alyssa looked at me. She laughed. She went back to bed.

This year Barb didn't really feel like going out and getting a real tree. We do have plenty on our plate right now. I thought about it. I was in the mood to get the Christmas mood in the house. But then I asked Barb, "Why don't we just do the ladder? That's all I ever did anyway until I met Alyssa."

Barb agreed. The Christmas Ladder was positioned and strung with lights yesterday. I love it!

Big Business

2009-12-03T06:02:00.003-05:00

Who would have ever thought that we'd see a union vote for a contract that lowered wages and promised cutting up to 1,000-jobs?

That's what happened at Harley-Davidson of York yesterday. Harley threatened to move the plant to Kentucky unless they got what they wanted. I think they're still waiting for funding from the state to help convince them to stay too.

When I worked for a large local printer they wanted to build a plant in Northern New Jersey to attract more New York business. But once they learned of the real estate and construction costs in Northern Jersey they dropped the idea.

Until someone came up with an idea to fool the state government. Word would be let loose that they were planning on building in North Jersey and taking hundreds of jobs with them, even though they had given up on North Jersey completely.

The state trying to save jobs lined the printer's pockets with funding if they would build locally. They did. The building is barely used. What a scam.

Is there a similar situation going on now with Harley? We know they threatened to leave. But who knows if that was serious or just a threat? The state was eager to find funds to keep them here. The union was eager to conceed much to keep them here. Would it actually be cheaper to build a brand new plant in another state rather than retrofitting the existing plant here? Perhaps.

I don't like being so suspicious. But I've really seen too much to be anything but. Let's face it...can you really have nine cars all individually worth around $100,000, and an indoor basketball court, if you're living an honest life?

I'll always remember boating out a "creek" to the Chesapeake Bay with my Uncle. He caught me staring at this mansion on the water. It was HUGE! It had three-garages on the water for extravagant boats.

He said, "Jim, let me tell you. You can't get all of that and live an honest life. Trust me. I tried."

No News is Good News

2009-12-02T06:34:00.002-05:00

Woohoo! I didn't receive news yesterday that anyone had to head to any medical facility to meet with any nurses or doctors. That's a nice change of pace.

I've been feeling a little bit stronger each and every day. There's still a long way to go. But at least I'm heading in the right direction.

The girls (Barb, Alyssa, Susan and Debbie) are getting together today to run around and do a little shopping. Barb keeps asking me if I'm OK with that. I'm great with that!

I needed a "drug holiday," and I'm certain that Barb could use a "Jim holiday." Actually I think it will give Barb great joy to be able to hang out with the girls in the family for a bit. They're quite a bunch. I'm thrilled that they'll be able to do this, absolutely thrilled.

I am "shopping challenged." I'm probably not doing a good job supporting the local merchants since I order everything (EVERYTHING) on the internet. But shopping just doesn't go well with me.

Perhaps its all the women's clothing stores and departments I was drug through by my Mom when I was growing up. Perhaps it was the fact that I only ever felt I needed jeans and t-shirts to get by. Afterall if I was shopping for a lawn tractor, I don't think I'd really mind that.

Everyone who knows my Mom knows that she has a serious shopping habit. It's no big secret. Everyone knows it. Now that she's retired and has a fixed income her shopping habit has caused me some worry and stress. Can she change? How do you change something that you've been doing for more than 50-years? It can't be easy.

Life is a constant evolution. We might not always be thrilled about those changes. But those changes they will come. I wasn't thrilled about the changes that cancer brought to my life, but the directions I had to take seemed quite obvious to me. I made the most with what I had, no matter the circumstance. Trying to force things against the current was useless. Sitting around in my own pity seemed even more useless. We have to examine how our lives' change and just roll with it, making the appropriate choices to still find happiness in everyday of our lives.

Someone recently told me that I have a "butterflys flying out of my butt attitude." Well that sounds a lot better than bees! lol Especially if the choice is mine!

Oh Boy

2009-12-01T05:46:00.002-05:00

My Mom called yesterday morning. After the fall she took on Thanksgiving her neck had gotten very stiff. Then it began getting very sore - too sore.

So in the middle of the night Sunday she drove herself to the hospital to have things looked at further. She had two fractured vertabrae, both high on the spine near the skull.

They set her up with a hard brace around her neck and some serious pain killers to deal with the serious pain. In four-weeks she's scheduled for a review to see if she can switch to a soft neck brace.

Oh boy! She once told me during a tough spell for my Dad that I had to stay healthy because she could only handle one of us down at a time. She's not taking her own advice!

She was of good spirits yesterday. Perhaps it was the pain killers. I don't know. I do know how bad the pain can be from a spine injury. I do know that she's going to have to do some serious relaxing for many weeks to come to let everything heal. I hope she can sit still. Sitting still isn't always that easy.

Don't worry about things Mom. Just be patient and let things heal.

Without an Interferon injection Friday or Monday I'm starting to feel a little stronger. I understand that it may take a little while to clear this stuff from my system.

I called my oncologist yesterday. It has always impressed me that my oncologist provided me with his cell phone number many months ago. I don't abuse that privilege. I remember telling a nurse once that I'd call the doctor on his cell phone. She looked at me with complete shock and said, "You have his cell phone number?" She had been unsuccessfully trying to get ahold of him.

I thought it was important to let him know my decision to stop the Interferon injections. It was something we had discussed previously so I knew he'd be OK with this, taking a "drug holiday."

He called back in the middle of dinner last night. We don't answer the phone during dinner. He left a message expressing his regret that the drug effects on me were so harsh. He suggested that we could cut the dose in half, or perhaps do a full dose only once a week. I'll have to consider those options, although I think I'm leaning towards the once a week choice. We'll see.

Working Hard

2009-11-30T05:42:00.002-05:00

I always thought that I was pretty tough when it came to handling all the cancer drugs and their harsh side-effects. I know the nurses often seemed surprised how strong and energetic I was. I'll always remember the specialist at the University of Pennsylvania walking into the room and being taken aback before saying, "Wow. You look really good."

It hasn't been easy. But I have worked hard.

Until Friday, I had enough. I slept almost all day long everyday. I felt like I was just curled up in a ball on the floor. Ironically, the drug that got the best of me was a drug meant to boost the immune system and not a chemotherapy.

I expected a drug meant to boost my immune system to make me feel good, make me feel strong. Ugh, that's not the case at all. The more I learned about Interferon the more I learned how difficult it is to handle.

After not being able to attend Thanksgiving with my family, after not being able to visit with my cousin Lynn from Florida, after getting tired of living life as one constant nap, I skipped the planned Interferon injection on Friday.

Last time I saw my oncologist one thing we discussed was taking a "drug holiday." On Friday morning I called the hospital and let them know that I wouldn't be coming in today. This morning I'm going to leave a message with my oncologist letting him know what I've decided. Then I will leave a message with the chemotherapy nurses as well.

I can't say that everything feels better after being off Interferon Thursday, Friday, Saturday and Sunday. But I am going to be working hard to try to get back to speed. I've lost 20-pounds and have become very weak, and I want to start turning that around. It actually feels like some of these drugs make metabolic changes to your body. They change things. And it's not just going to take a day or two for all of these things to just change back.

How long does it take to work the effects of over three-years of continuous chemo out of your body?

Am I setting new records?

They did tell me in radiation that I now hold the record for most Gamma Knife radiation treatments.

Ugh. What a record.

Sick of Being Sick

2009-11-28T05:32:00.002-05:00

The smoke cleared from one crazy Thanksgiving and we all eased into Friday morning with care.

Simba, Alyssa and Charlie's kitten, was put to its final resting place among much sorrow.

My Dad was back in Spang Crest on his new blood thinner medications and reportedly still with an irregular pulse, but feeling and acting very strong.

My Mom woke up quite stiff and sore from her fall. I tried to warn her. Take it from someone who has taken plenty of spills and falls, it's the next couple days when you feel everything.

I woke up feeling terrible once again. The drug Interferon was driving me into the ground. I made a big decision to take a "drug holiday." Instead of going to the health campus for my injection I called and told them I wouldn't be coming today.

Last time I met with my oncologist he suggested the idea of a "drug holiday." I told him that I wanted to pursue the Interferon until the end of his planned cycle (which is the end of December) then have a CT scan to see if it was doing anything or not. Depending on the results of the scan we would continue with Interferon or switch to a new drug that was just recently released.

Interferon is a drug that supposedly has been around for sometime and used for many different cancers. Any time I would mention it to nurses at the cancer center they would scrunch up their face and ask me how I was doing it. They knew all about how rough it can be.

According to the nurses they have one other patient on Interferon, and according to the nurses she comes in every day for an IV and then goes home right to sleep until the next morning when she does it again.

I was starting to feel this way. I became so constantly tired, so weak, aches all over my body. When I folded a blanket on the bed every morning it felt like the heaviest weight in the world.

My digestion became terrible. I had a stomach ache every day. I lost 20-pounds.

Because of Interferon I missed Thanksgiving and a visit with my cousin from Florida.

I've had enough for now. It's time for a holiday. I need some time to try to regain strength before putting my body through more.

For now, all I've decided firmly upon is taking off yesterday. Barb and I are discussing what makes sense into the weeks to come.

I don't think that there will be much benefit from a one-day holiday from the drug. I meet with my oncologist again on December 10. So we're thinking it might make the most sense to stay away from the drug until we meet with the doc again and then take things from there.

Obviously missing Friday's injection alone won't just make everything better. These drugs change your whole metabolism. It will take awhile for me to build up my strength again.

I've always been somewhat proud about how I've been able to stand-up to all of these harsh drugs. They finally found one to really pound me.

What a Day

2009-11-27T05:19:00.003-05:00

I tell people that I never know what kind of day I'm in for until I wake up in the morning. I could tell yesterday from the moment I woke up that I was in for a bad day. I felt terrible. But I had no idea what I was in store for.

I did make the very difficult decision to stay at home for the day. Barb's parents were going to drive us to Myerstown where we were to enjoy a Thanksgiving meal together. But I felt so lousy I just couldn't imagine it. Everything hurt, everything ached, I felt weak all over and generally just felt out of it. I just wanted to go back to sleep.

It was a choice of being a total zombie surrounded by the comforts of home, or being a total zombie in Myerstown while trying to interact with others. I couldn't imagine interacting with anyone.

But this was only the beginning.

At 7:30 a.m. the phone rang. I soon heard my wife getting upset. I asked her what was wrong. It was Alyssa. Her kitten had passed away over night. She loved that kitty. Alyssa is a very sensitive gal and loves animals. Simba had developed a condition that built fluid up around his organs. The vet still doesn't know exactly what caused it even with the help of tests.

As anyone who has had pets would understand, it was tough on Alyssa. And with Alyssa being so close to our hearts, it was tough on us too.

Is that it? Nope.

My brother called after lunch to let us know that my Mom had fallen when Noel got under her feet. She hit her head. The gang had to take her to the hospital where she received four staples to close a cut. I spoke with her last evening and she's doing well and laughing about it. But she still might have been a little numb. I'm guessing she may be feeling a little more pain this morning.

We also learned yesterday that my Dad's recent issues have been caused by a clot in his lung. He has been prescribed a blood thinner. From measuring my Mom's reaction to all of this, there seems to be some strong sentiment that the blood thinner will do the job on the clot just fine.

I never felt very strong all day yesterday. My day included both a morning and an afternoon nap. Not even Freckles wanted to join me. Maybe I was snoring, although that never seemed to bother him before. Afterall, he's quite a snoring creature himself.

My stomach was rough all day and I really didn't eat much more than a couple of pretzels. For dinner Barb pulled together a couple of our homemade cheese steaks. So we had Thanksgiving Day cheese steaks for dinner. They were delicious.

This morning already seems like I'm into a more energetic day. But it is another day for my Interferon injection...so...we'll see...

What a Thanksgiving! Our we ready for our own reality TV show?

Lots to Be Thankful For

2009-11-26T06:54:00.001-05:00

Happy Thanksgiving everyone!

Results Day

2009-11-25T05:23:00.002-05:00

We're expectiing results today on the fluid that was taken off my Dad's right lung on Monday. We're hopeful, of course, and keeping our fingers crossed.

One thing that has really confused me is how, just now, they've said that my Dad's ribs are still cracked from his fall earlier this year. It doesn't seem possible that his ribs could still be broken over these many, many months. Plus it has me wondering how this couldn't have been noticed with follow-ups for the initial treatment.

I can't help but think that the cracked ribs and the fluid have something to do with one another. Hopefully we'll find out everything today.

Barb and I's hearts were with Alyssa and Charlie yesterday. They're kitten, Simba, still less than one-year-old had not been himself the last few weeks. A trip to the vet revealed that Simba had fluid through his mid-section. The diagnosis from the vet was not good. The vet suggested putting him to sleep. He also warned that this rare disease was also likely contagious and would affect their other kitten.

Alyssa would not accept just putting Simba to sleep. She convinced the vet to extract some fluid and run some tests. The vet did.

How ironic...my Dad and Simba both having fluid extracted and tested with results due tomorrow.

The vet apparently called Alyssa last night and informed her that early tests were negative. Then he called back later and said that he never saw a cat bouncing back so well.

Our thoughts have been with little Simba all night, and Alyssa and Charlie of course.

Our thoughts have also been with my Dad and Mom has they await his test results. We'd, of course, like nothing more than to see him home for Thanksgiving.

Sounds Good and Bad, Mostly Good

2009-11-24T07:42:00.002-05:00

Barb and I were beat last night and went to bed a little early. I only made it until about 9:30 p.m. and then I was up for the rest of the night.

I could tell that I was having one of those "Interferon nights," where the medicine creates chills, and small headaches, and the brain just can't relax and sleep.

Someone warn Freckles, I'm bound for a nap or two today for sure.

I did talk to my Mom last night about my Dad's procedure on Monday. They pulled two-quarts of fluid off the lining of his right lung, and they said that his lung reflated. They did add though that there was blood in the fluid taken away from his lung.

Having his lung reflate is very good news. Hearing about blood is never good news.

They are testing the fluid to determine what it is and where it is coming from. They expect results by Wednesday.

After he was released from the out-patient procedure, my Mom took my Dad to lunch where she said he had a great appetite. Then they both visited the house on the hill and relaxed. When I called to check on things I was surprised and pleased to be able to talk to my Dad a bit.

There's two big phone talkers there! lol But we did have a good conversation and he did sound quite well.

He was due to return to Spang Crest last evening.

I'm due for a nap.

So Thankful

2009-11-23T05:51:00.002-05:00

It's so difficult in this day and age when everyone is so constantly busy to get the whole family together. Yesterday we were able to join Barb's family at Jay and Debbie's (her sister and brother-in-law) house to celebrate an early Thanksgiving.

It was great - great family, great friends, great food. I feel very thankful.

We even had a couple screaming kids, one of which colored me a picture from a "Thomas the Train" coloring book. lol

Besides having mashed potatoes, filling and gravy all on the same plate at once, I think my favorite moment was watching Barb's Dad chase the kids around the house. They all had such big smiles! And yes, that does include Barb's Dad Bill.

Barb and I owe a big thank you to Alyssa and Charlie for coming all the way over here to pick us up, and for also returning us home. I feel like I keep getting stronger, but it can be very unpredictable for me at times. I always wondered how an infant could fall asleep right in the middle of eating. Now I understand.

A big thank you to Debbie and Jay for hosting all of this and putting up with all of us.

We left with warm bellies, and warm hearts. Thank you!

Falling in Place

2009-11-21T05:44:00.002-05:00

I'm trying to find a rhythym to my daily activities that seems to agree with me best. I don't think I'm quite there yet. But I do think I'm getting close.

In the morning I'll typically start with a cup of coffee, the news, and the blog. My body is not really fond of the coffee. But the coffee does get my digestive track going which is very important. As we say around this house I will try to "potty like a rock star" before I move on to anything else.

I'll come back down the stairs and Barb will ask me, "rock star?" I'll answer her appropriately, "Yeah! Ringo Starr!"

Whoever thought we'd be having a conversation like that? lol

After that event I usually blog while sorting out my morning pills and planning some breakfast. I like blogging while my mind is somewhat fresh in the morning, although I'm not sure that my morning brain is always the best for spelling and grammar.

I'll start with a simple multi-vitamin, then move into the steroid, before taking a couple supplements. I try to spread things out a little bit because my stomach is not fond of the feeling of a handful of drugs all sitting in there at the same time.

Just this past week the oncologist prescribed me Prozac, but not for its traditional purpose. The Prozac is supposed to fight the fatique that I have from the Interferon. The Interferon is an immune therapy which is being used against my cancer right now. I have injections of it three times a week.

So far I've taken Prozac the last three days. Thursday was the only day thus far where I actually seemed to feel some positive effects from it. Thursday was also the only day when I didn't have an Interferon injection. So we'll see.

The morning pills and breakfast kind of all rollover into the same event, since some drugs require food to be eaten with them. I often have something like a ham and cheese sandwich, and maybe a doughnut.

After I have some food in me I try to do some simple exercises, most stretching. It's not much but it does seem to help me out of course. Some deep knee bends, some leg stretches, some arm stretches, it's always hard for me to get started. But once I get started I get into it.

Then it's time to jump in the shower. I would think that the shower would wake me up and get me going even more. But nothing ever seems logical in the cancer fight. Often when I get out of a shower I feel like sneaking back to bed for a nap. I don't know why. If I can make it through that first hour after the shower without taking a quick nap with Freckles I can last through lunch with a nice little second wind.

With everyday there is a nap or two somewhere, either mid-morning, or early afternoon, or both. It refreshes me and makes me feel like new, well at least for awhile.

I try to stay busy as much as possible, although much of what I do these days is very simple stuff, like changing a light bulb, or making the salad for dinner last night. It seems like the more friendly activity I get involved in the better my fatique is too.

Of course there is another session of pills around dinner time. It's all pretty much the same, except this time there is no Prozac and I have to take six Dilantin instead. Taking six pills at once is a bit of a burden. But that's the way it has to be.

I'm trying to have the more and more strength everyday to get back involved in preparing dinner. Barb and I have always shared cooking responsibilities. As she has been doing all the cooking lately I think she began to appreciate more and more the nights she had off from cooking before. I've always loved to cook. I'm pretty sure that it's because I love to eat.

Through some odd coincidence the painters that our neighbors hired are showing up at our place this morning to paint a small strip of our house that runs between our house and ours. No on else can see this small strip but our neighbors. Still it is something that has been on my list of things to do.

I better get on schedule of events for the day before they show up and start making some noise.

Power of Prayer

2009-11-20T05:43:00.002-05:00

Jesus taught his disciples how to pray -
Our Father, who art in heaven,
Hallowed be thy Name.
Thy kingdom come.
Thy will be done,
On earth as it is in heaven.
Give us this day our daily bread.
And forgive us our trespasses,
As we forgive those who trespass against us.
And lead us not into temptation,
But deliver us from evil.
[For thine is the kingdom,
and the power, and the glory,
for ever and ever.]
Amen.

Considering myself a disciple I find myself reciting the Lord's Prayer to myself a couple times a day. I don't really have any set practice of doing so. The mood or "need" just seems to strike me and I find myself in the midst of it.

I must say that it makes me feel stronger, fills me with warmth. It makes me feel closer to God.

Of course one or two other prayers make it into each of my days.

I was given a nice little knick-knack box and on top it says "When you pass through the waters, I will be with you." I see that every day and it fills me with strength and assurance.

I've been told that the Lord hears all prayers. Who am I to question that? I guess He does. There are a lot of things that I'm not meant to understand.

To me, prayers were always a way to get closer to God. Prayers were a bridge, they were a hand out-reached.

I'm not sure how God could hear all of our prayers from the many corners all around the world. I'll tell you He must have one really over-filled i-Phone, and a really big bill.

But I don't expect all of my prayers to be answered. Somehow I know that they are being heard. It is a connection for me, a living, breathing, every day connection to our God. That's all I need.

I don't feel right praying for myself. Oh I do pray for forgiveness. I do pray for times when I'm not even half the man that I should be in God's eyes. But I don't pray for my health, or for a flat-screen TV.

I pray for others, for all those who are so close to me and for those I will never know. I pray for those who know the Lord well and those who have never met Him. I pray for those who are suffering, starving, in-need.

Are all my prayers answered? No. But it doesn't matter. Prayer gives me that special connection to God. They say that communication is the cornerstone to a relationship. Prayer provides me with that special relationship which bonds my faith with the beyond.

It can be a complex issue to really look at deep in our hearts and souls. But Jesus did simplify it for us in the Lord's Prayer that we all recite today. The prayer that I have just recited to myself just now.

Powdered Doughnuts

2009-11-19T06:06:00.002-05:00

My Dad is scheduled for a procedure on Monday to remove fluid from his lungs. From what I understand he will just need a local anesthesia for this process. As long as his lung does not deflate during the process it should be a relatively simple process.

The doctor and medical team does not know what the fluid is or where it is coming from. Thus in removing the fluid they can sample and test it as well to hopefully determine what is causing it.

According to my Mom she has noticed some moments of my father running a little short on breath. But beyond that he seems like the same guy we know and love.

He's a fighter. He's a tough guy. He's a warrior.

We're hoping that things go very well on Monday so perhaps Dad can join us in Myerstown for the Thanksgiving holiday. But if he can't, we'll be taking the holiday to him.

My Mom often tells me that my Dad often asks about my condition.

It was very strange the day I was diagnosed with cancer. On that same day my Dad had his first small stroke. Plus my good friend had his house foreclosed on, which was before the economic crisis. Man was that a day. Whew.

My condition could be better. I'm not going to lie. I've been through a lot lately and it is taking its toll on me. But as the doctor asked Barb and I during our last meeting, "Are you feeling depressed at all?"

"Him?" Barb answered. "I don't think so."

Depressed? Never. I rest my soul in the Lord's hands who gives me the power to persist through the roughest of waters.

Grouchy? Well sure. When I'm feeling lousy I can't help but feeling a little grouchy. I've found that being a little whiney helps a little so go right ahead and whine.

Barb and her Mom kindly ran out to fill our fridge and pantry up with food yesterday. I've done some driving around town but not much beyond the borders of Marietta recently. My condition can be very unpredictable, but still more often lousy then good. I can be feeling pretty strong one hour, and an hour later be ready to crawl into a corner and just fall asleep.

But some things don't change. I'm still the same goofball I've always been. Barb picked up some of my favorite little fresh baked doughnuts. It only took a couple minutes for me to have a bunch of white powder from a powdered doughnut down the front of me.

Mmmmmmmmm. They's so good!

Is It Starting Early?

2009-11-17T06:51:00.001-05:00

Maybe I'm just imagining things but it seems like the commercial side of Christmas is starting earlier and earlier every year. Is it possible that we will start seeing Christmas ads around Halloween?

I don't want to glaze over my favorite holiday, Thanksgiving. It's all of the family, all of the friends, all of the food, and none of the presents.

I love giving presents. But I give them for no particular reason. I definitely do not wait for a specific day. Ask Barb, I'm famous for giving out presents for no particular reason at all.

There are way too many holidays. The greeting card companies have introduced as many as we'll accept. There's Sweetest Day, Secretaries Day, Boss's Day. November is bringing us "Word Hello Day," and "Cake Day."

Ugh.

When I was very young I remember asking my Dad when "Kids' Day" was. He laughed hard for a good five-minutes. When he saw that my expression was still serious, he gathered himself and said, "Every day is Kids' Day!"

Shopper Extraordinaire

2009-11-16T04:09:00.002-05:00

This past Spring when we add central air installed in this old house Barb lost some pretty good space in her closet in our master bedroom. A vent had to be run from the attic to the first floor and it was the only logical path.

Since that time Barb has been struggling a bit to find enough storage space for her stuff. The result was a little pile of stuff here, and another little pile there, and another pile over there.

Complaining is easy. Anyone can do that. So I didn't complain. I offered a suggestion. Why don't we look for a dresser for you and set-up next door in the guest room (Alyssa's room)? We agreed, this was a workable solution.

We didn't want to spend too much. But we didn't want something real cheap. We wanted something that fit in with the old style of our house. We looked around. But we weren't having much luck.

Late last week apparently Barb told her Mom, Susan, about our search. That was all she needed to hear - the super shopper was on the case.

Susan can tell stories of her incredibles finds and purchases. The wonderful thing she got at this yard sale. The remarkable stuff she dug up at this garage sale. The deal she found on fresh pears. She's very proud of her ability to find really high quality stuff at really low prices. And she should be proud.

Well as soon as Barb had told her about our search for a dresser it took Susan less than 24-hours to find one. I swear. I don't know how she does it.

It was perfect, in good shape, solid wood, five-drawers. Wow!

Saturday Barb's sister Debbie and Susan delivered the dresser. I immediately tried to help get this piece of furniture from car to second-floor of the house, and I was instantly scolded and told to go sit down. I was not allowed to lift a thing.

I got the handtruck out and tried to offer advice, some good, some not so good. I watched Barb, Susan and Debbie lift that thing up the steps and into the spare room. That thing was not light either.

I knew that Barb could throw the muscle around. But I was surprised how Mom was throwing the muscle around too. I mean Susan must be in her early 40's right?

Well at least now I know where Barb gets it from.

I Didn't See That Coming

2009-11-14T05:25:00.002-05:00

When the oncologist told me that he was going to put me on Interferon injections I didn't think much of it.

After all Interferon wasn't even a chemotherapy. It's an immune system booster. It boosts your immune system which then starts to eradicate everything in the body that doesn't belong there - like cancer.

To me, this all sounded like it would make me feel good, make me feel stronger. After all how could a stronger immune system make me feel bad? Plus the Interferon was delivered via an injection three times a week. It wasn't like chemo where I would get hooked up to an IV drip for a couple of hours.

This would be easy.

It's been anything but. I think the side-effects from the Interferon have been rougher on me than any of the four chemos I've been on. It has me feeling really lousy. I ache all over. I have tremendous fatigue and just want to rest all of the time. My digestion is all messed up. It's been a challenge to be sure.

The oncologist has prescribed some other drugs to try to counter the side-effects from the Interferon. We'll fill those prescriptions on Monday and hope that it may help. He pretty much has left it up to me on where I want to go with this. He suggested that perhaps I take a "drug holiday." He also suggested lowering my dose of Interferon. He also said he'd stop it if I choose and just switch to a new drug that just came out.

He is convinced that my body will reject any kidney cancer drugs out there, even the new one, because all the drugs have the same basic make-up. That's why he's so indecisive about it all. He seems much more focused now on trying to make me feel better.

I'm going to at least try to live with the Interferon a little while longer. I started this nasty drug, I'd at least like to try to find out if it has had any consequence. I don't like the idea of getting so beat up over nothing. According to the oncologist the Interferon has a response rate of about 15-percent, not very high in the grand scheme of kidney cancer drugs.

This weekend is going to be about recovery. Come Monday morning I will have to commit to eating, exercising, and taking additional drugs that might help see me through this immune system boosting.

(sigh)

Another Face Off

2009-11-13T07:00:00.003-05:00

Generally I'm not much of a talker. But on occasions, when necessary, I can talk the talk. There is no question that my oncologist is quite a speaker and I have no doubt that he's addressed meetings of doctors.

Yesterday, we faced off. It was all good. It was all positive, of course. But we both became very interested with the conversation and followed it through. I knew that I needed to secure enough of his attention so that I could get as many answers, as much wealth from his brain, as possible.

Even though Sloan-Kettering recommended one of two kidney cancer drugs, the only two I haven't tried yet, my oncologist is not feeling real strong about the idea. I do understand his point of view. He thinks I have reached a point where any drugs he would give me would hurt me more than help me. I've had chemo for more than three-years! I've had at least five Gamma Knife brain treatments! They've certainly raked me over the coals. I am pretty beat.

But the doc will concede and let me try anything I want. We talked about it. I guess I am basically, right now, kind of my own oncologist.

I told the doc that althugh I understood his point of view, I still felt compelled to fight on, because of my faith, for my wife, my daughter, my families and friends. But I did had that life and cancer was not necessarily always a black and white thing, and solutions sometimes were gray. He agreed.

It was an interesting debate. There was a resident student in attendance. I have a feeling he go a lot more than he ever expected.

So basically we're going to run the current Interferon injections out until early January when we'll do a scan to check to see if the drug has has any effect on the cancer. Depending on the result we'll continue the Interferon or switch to a new, recently released drug.

A big thank you to Alyssa for driving us into the health campus yesterday. It was a raw, cold, just nasty day yesterday. It looks like more of the same today.

Licking the Wounds

2009-11-12T07:13:00.002-05:00

According to the doctors and nurses at Lancaster General radiation/oncology I am setting new records - most Gamma Knife treatments endured by one person. A dubious record to be sure. There was some debate yesterday whether this was my fifth or sixth Gamma Knife.

Whew.

The Gamma Knife has been around for about 10-years or so. But unless you've had personal experience with it you probably don't know that much about it. Basically it's a high-dose of radiation directed to an exact location. It's brain surgery without an incision. It has certainly become the treatment of choice for brain tumors under 2-cm in size.

The treatment is really not that bad, with the exception of one small aspect of it - having the metal frame screwed to your skull in four places to ensure exact positioning while the radiation is delivered.

I'm still not quite getting used to that. I don't think anyone would.

After a nurse starts you on some anxiety and pain drugs, two doctors and another nurse join the party and to a dry fit of the frame on my head. When they're happy with planned positioning they start sticking me with these needles that create numbness. Soon they're screwing the frame into place against my skull before giving me a little warning that they're going to tighten it all up.

I'm not going to lie to you. It's no fun.

As soon as the frame is secure on my skull I'm wheeled off to MRI where I'm given a double dose of dye and a 10-minute scan. The doctors and engineers use this scan to plan my radiation treatment. When they're ready I'm into the Gamma Knife room, laying on the table and having the frame on my head locked into other metal bars for positioning and stability.

Yesterday I had three small tumors, all around two-millimeters, and each required about 15-minutes of radiation.

They never mess around in getting the frame unscrewed from my head, which is appreciated. They'll try to dry up the areas around my head that are bleeding from the screws, and I go home bandaged, bruised, bleeding, still very numb and sore.

Last night I could not feel the back of my head as I slept, which was probably a blessing. From past experience I know that more pain will appear today as the numbness from the drugs continues to subside.

Considering the recent talks I've had with my oncologist here in Lancaster, and the oncologist at Sloan-Kettering in New York, I asked my radiation/oncologist and my nuerosurgeon if I was getting to a point where I might be considered beyond treating.

Surprisingly they both quickly agreed that I was certainly still very treatable. Everything has been caught in a very small stage, the one doctor said, and everything has reacted very well to treatments so far. They were both very positive. I was happily surprised by this answer.

Today is a recovery day, even the shower will be interesting and somewhat painful. But I do have to make sure that I am strong and thoughtful by late-afternoon when I'll meet with my oncologist. I already have quite a laundry list of questions.

Kindness is Contagious

2009-11-11T03:52:00.002-05:00

Late last week Susan, Barb and I were at the cancer center for my injection. It was a packed house. We had never seen it so full.

We took the last couple seats besides one odd seat here and one odd seat there. Just then an older couple walked in. Their walking was both a little challenged. She was assisted by a cane. They scoured the full room and decided to stand and prop themselves up against a wall.

I squished into the love seat that Barb and Susan were already sitting on and waved to the couple to join us in the two-open chairs this move made.

The wife noticed my waving and brought her husband's attention to it. But he shook the offer off.

I was a little flustered. I wasn't happy seeing them have to stand. I thought I'd take a different approach. I went to the ladies at the registration desk, who know me well. I wanted to let them know that they had people standing out here and maybe it might help to toss me through my five-minute treatment and just get me out of here.

It turns out that they had an "emergency" in the chemo room and someone had a bad allergic reaction to their chemo. I'm sure my face said it all. This put a new perspective on everything.

On my way back to join Barb and Susan on the love seat (it was cozy) I pulled the two stray seats together, away from the wall, and placed them nicely around a coffee table. Again I tried to wave over the couple that was left standing.

I saw the wife bring attention to the seats again to her husband. He shook them off. He wanted nothing to do with it.

Well I did all I could. I tried. It was a little strange.

Most of my life I probably would have just ignored them, I'm ashamed to say. Obviously I have some company because everyone else in the waiting area was working very hard not to notice any of this, or anyone else for that matter.

Eventually the wife did ditch her stubborn husband and came over to sit down on one of the chairs I made available. She quietly picked up a magazine and kept to herself.

I guess acts of kindness are important whether they're acted upon or not. In the big picture one act of kindness eventually leads to more, by others, by yourself. It becomes contagious, in time.

Yesterday a neighbor stopped by our backdoor and asked if he could rake our leaves for $15. I was struggling to think of a way to get that done. He worked his butt off, did a great job. Barb gave him $25.

Two Steps Forward, One Step Back

2009-11-10T09:18:00.002-05:00

After noticing that my Dad was retaining fluid through his chest and into his ankles, my Dad's doctor ordered a CT scan which showed some fluid on his lungs. Yesterday my Mom was going to follow-up to ensure that an appointment was being made with a pulmonary specialist.

My Mom seems to feel confident that my Dad's issue can be handled with the right medications if they get in there and figure out the cause of the fluid retention. My Mom had my Dad at the house on Saturday and all reports were that it was a very good visit. I can't blame him for a second. It's good to be home.

But as I know all too well, it's often two-steps forward and one-step back when you're on a health-related journey. It can be a roller coaster ride.

I've come to learn that the Interferon that they have me on is certainly named appropriately, "Interfere On" everything. Every night after the injection earlier that day I get intense chills. Then later I get night sweats, small headaches and difficulties sleeping. My digestion becomes all screwed up and eventually I will have strong fatique and aches all over. How's that for well covered?

When my Mom had my Dad at the house, she called me and put my Dad on the line. It was great to hear from him of course, although my Dad and I aren't two of the bigger phone gabbers in the world.

I realized that a lot of the issues my Dad was working with I was working with too. Sometimes the simple routines of life proved a little challenging to keep up with.

Tomorrow I have my fifth Gamma Knife treatment. I'm setting new records there. Even doctors are surprised when they hear that. Ugh. Thursday I'll meet with the oncologist to ensure that the local oncologist and the doc from Sloan-Kettering compared notes. We'll see how it goes.

Thoughts in Florida

2009-11-09T05:08:00.002-05:00

When I was a real little tyke I apparently couldn't say Martha so I just said "Muk," in reference to my Aunt Martha. In our family it stuck and Muk she became and still is to this day.

Muk was always like a second Mom to me. Even though the Putnam family spent much of their lives working in Saudi Arabia, Muk always kept her family ties to Myerstown very close. Muk is very thoughtful, exceptionally kind, with the biggest heart of anyone around.

In college I would receive notices from the post office now and again that I had a package waiting for me. Curious I'd speed down to the post office and find a shoe box sized package wrapped in plain brown packaging paper. It would always be from Muk. It would be a shoe box filled with homemade brownies or banana bread. It was awesome! When you're living on chili dogs and burritos nothing hits the spot so well as a box of Muk's homemade goodness!

I can't tell you how many smiles Muk has brought to so many people just by taking the time to send a simple card. I know from experience that a card from Muk would seem to show up just in time, when I needed a smile most.

I would visit Muk often when her and Rhea had retired to the Eastern Shore of Virginia. She had rules. No man and woman could sleep together unless they were married. Everyone who stayed for a couple days or so had to swim laps in the pool everyday, kids, adults, everyone. A chart on the fridge tracked daily swimming accomplishments. She was great that way.

A teacher in an American school in Saudi Arabia, a golfer, a tennis player, a housewife extraordinaire, Muk will always occupy a huge part in my heart. This weekend she celebrated her 80th birthday with many close family members traveling to Florida to shower HER with cards.

HAPPY BIRTHDAY MUK! Barb and I love you much!

Our thoughts are also with Lou and Doris in Florida this week. Lou is preparing for shoulder surgery. Lou and Doris are also very special, unique people. Doris's heart is as big as the day is long. And Lou? Well how many people do you know who stop their bride halfway down the aisle to sing to them? Lou is that kind of special.

I have no doubt that Lou will pull through the surgery well. He's a tough guy. But I also know he's a typical stubborn male gorilla like me, so I ask him to practice patience with his recovery time. It's something I have to be reminded of myself quite often.

Oh, and to all our friends and family in Florida...it's 41-degrees up here and I'm extremely jealous!!! lol (pouty lip)

The Big Picture

2009-11-07T07:00:00.002-05:00

There is little doubt that Memorial Sloan-Kettering is like a Holy Grail in the world of cancer care. As soon as I returned all the nurses in Lancaster approached me with questions about what it was like.

It is a very professional place, set-up meticulously and extrememly well organized. First I had to be registered. Then I was issued a member card so I could go straight to my doctor's office in the future. Then I met with a very well-versed nurse. Then I finally met with the doctor. It was obvious that the whole event wasn't being timed to see how fast I could be run through the machine. I was a mission and the Sloan-Kettering team were dedicated to giving their best to that mission. I appreciated that.

If I have one complaint, and I do only have one complaint, I wasn't fond of having to recap my total cancer history four separate times. I had to gather my entire treatment history and forward it to Sloan-Kettering before they would even consider seeing me. When I registered I had to rewrite my cancer history once again. When I met with the nurse I had to review it with her in great detail. Then when I met with the doctor I had to once again go over my entire cancer history.

We worked hard, with the help of Lancaster General, to compile my entire history before the appointment was made. I never anticipated that I'd have to have my extensive cancer history committed to memory to repeat over and over and over again.

But in the big picture I'd rather have the doctor and his team err on the side of an abundance of information than very little information. This doctor definitely took a great interest in everything, from how the cancer was originally diagnosed up until today with the cancer spread throughout my body.

The doctor and I did discuss a somewhat philosophical subject that I had discussed recently with my local oncologist as well. It gives me, and my "team," things to think about.

Both doctors now have explained to me that we are reaching a point where all the doctors are truly doing through further drugs, and through radiation, is beating me into a pulp. Chemotherapy is poison. Radiation is poison. Everything in cancer care is meant to kill the cancer, and just stop short of killing you. After more than three-years of chemo and radiation both of these doctors have now explained to me that they are concerned that their treatments will do more to make me suffer more than anything else.

I understand what they're saying.

Both doctors have told me that ultimately it is up to me. If I choose to continue getting beat into a pulp they will oblige. But they want to make me aware, as the doc at Sloan-Kettering said, "Quality of life may be more important than quantity of life."

It's exactly how kidney cancer was advertised to me from the very beginning. I've always known this. It's an interesting issue. It's an issue I wanted to share with all of those who have incredibly built up such magnificant support around me.

It's not a question I face today. It's more of a looming question that I must consider moving forward. There doesn't have to be a "yes" or a "no" as an answer either. It can be hedging across borders.

I am very curious though how others would interpret this question.

I've always felt that I was compelled by God and by my faith to treat my body as well as possible, like a temple, until called by God. I've always thought that we are meant to continue our Earthly lives through all troubles and tribulations. I've always felt that we all had our crosses to bear and bear them we must.

This is why I've kept up this fight. People are not supposed to be on chemo for more than three-years, or have five Gamma Knife treatments.

But here I am, a piece of Swiss Cheese or not.

New York - Part 3

2009-11-06T05:44:00.002-05:00

On Monday Susan, Bill, Barb and I all got ourselves ready, grabbed a cab in front of the hotel and made our way toward Memorial Sloan-Kettering where I was scheduled to meet with the doctor.

Getting a cab in front of the hotel is as easy as it gets. Cabs troll in front of the hotel just looking for any hotel guest that needs a ride. Cabbies "live" in their cabs and apparently only take showers or baths occasionally. So each cab is filled with the fragrant aroma of the cabbie himself.

Again there was a language barrier. But the cabbie seemed to recognize something we said and took off.

Sloan-Kettering is actually a series of buildings in one general area. There is an overall hospital, and there are individual buildings for different types of cancer. We were looking for a specific building that was solely for kidney and testicular cancers. The cabbie dropped us somewhere in the middle of the Sloan-Kettering complex of buildings. We knew we were close. But we were lost.

One of Susan's great talents for the group was as our spokesperson. She was the representative of our group to New York City. We stumbled about, looking aimlessly around for our destination, when Susan took charge.

A lady passed Susan and she tapped her on the shoulder and asked her if she knew where Sloan-Kettering was. The lady turned around, startled looking, and she wasn't a lady at all. It was Mick Jagger!

Now it wasn't actually Mick Jagger. But it was the closest thing to Mick Jagger I have ever seen, and it obviously was no accident. The picture I cannnot get out of my head is Susan and Mick Jagger both seeing each other for the first time. Susan was startled at the site of Mick, with good reason. Mick was startled with Susan because Sloan-Kettering was just across the street and because you're not really supposed to talk to people on New York City streets.

That meeting is an image that will be locked in my brain forever. I wish I could share it with you. Every time I think of it I get the biggest smile. It's the highlight of my trip. Hey, I'm a simple guy.

Mick had shown us the way. We crossed one street and there was the Sloan-Kettering building where we needed to be.

(Part 4 Tomorrow) Overall Sloan-Kettering Review

New York Part 2

2009-11-05T07:14:00.002-05:00

I am incredibly thankful that Barb's Mom and Dad joined us on our trip to New York. They gave us a wider base to stand on, if that makes sense, firmer footing, a couple good friends to turn to amongst the millions in the big city.

I think we all agreed that the trip was conducted well. We did not want to have to endure too much traveling all in one day. So Sunday was all about getting to our hotel in New York. Monday was all about meeting the doctor at Sloan-Kettering. And Tuesday was all about getting home.

Our train came into Penn Station on Sunday late afternoon and our first challenge was finding our way out of Penn Station. I think somehow we walked the length of the facility before we somehow popped out on a very crowded street.

We just wanted a taxi to the hotel.

Some joker decided to help us hail a cab, for a tip of course. Problem with the cab drivers seemed to know him and seemed to be ignoring him. Susan and I started trying to hail a cab as well and he started to compete with us. He was shady. But eventually he did get us a cab and we were heading north through the city.

I'm sure everyone knows this, although it still seems a little strange, but no cabbies in New York speak English. You have a weird conversation and the cabbie takes off and you just can't believe that there was any understanding of where you want to go...but then somehow you get there.

On the way to the hotel our cabbie endlessly talked to his girlfriend on the phone while we whizzed in and out of cars and through side streets. I didn't think there was any chance we would reach our destination...and then...poof...he made one turn and we were there.

I asked for two rooms as far away from the street noise as possible. We landed on the 15th floor. Everything was clean. The staff was kind and professional.

By the end of the trip we had all commmented about how polite the people in New York had been. I think we were all a bit surprised by this. Wouldn't you be? Our hotel was on the Upper East Side, in a residential neighborhood, between Central Park and the East River.

Barb and her parents went out for a walk one morning and visited the East River.

"How was the river?" I asked Barb.

"Stinky," she replied with a scrunched up face.

(Part 3 Tomorrow) Susan asks Mick Jagger for directions.

Back From the Big City

2009-11-04T06:42:00.002-05:00

We've virtually just landed back here in Marietta from our trip to New York City. We immediately have to get ourselves together to run out to the Lancaster General Health Campus to meet with the nurse practitioner and have an injection of Interferon.

We're still trying to decrompress from the trip, and start to unpack our suitcases. We're still trying to get used to sleeping on the second floor (of our house) rather than the 15th floor (of the hotel).

There's a lot of stories to share from New York. But with little time this morning I should share the main story and then follow with others.

Barb and I did meet with the kidney cancer specialist at Sloan-Kettering. He was a very young guy, but he was obviously suited for his prestigious position. The doctor was very sharp, and certainly had skills both as an academic and as a physical, hands-on doctor.

We spoke of all kinds of different things. But here is the bottom line:

- because of the spread of the cancer to my brain I am not eligible for any clinical trials

- if cancer will stay out of my brain for at least three-months I WOULD be eligible for clinical trials

- there are two FDA approved kidney cancer drugs out there that I have not tried yet.

The doctor at Sloan-Kettering was planning on contacting my oncologist here in Lancaster today to discuss these options.

There is much more to discuss as time permits. But that is the main response we received from the expert in New York.

There are some fun stories from New York too, like when Barb's Mom asked Mick Jagger for directions on the street.

Road Trip

2009-10-31T07:36:00.003-04:00

When Barb and I are driving around and suddenly a traffic signal turns yellow before us I take a very negative perspective of the situation. "We'll never make it. Not a chance. We'll never get there in time," I say.

Then we typically do.

It's odd. Don't ask me. I don't know much about it. But I've found if I expect the worst I'm pretty darn thrilled when the best happens instead.

I think I like to live in the reality that not everything is going to go just the way I want - and that's OK because I'm prepared for it.

I know there are a lot of high hopes that the doctor I am meeting with in New York City will have access to something magical that will turn my cancer journey around. I wouldn't be going on this trek if I didn't think that was a possibility. But, all in all, I'm not expecting any miracles. It's like the yellow light, I never expect that I'll get there before it changes red.

It sounds like a negative spirit. But it is really part of an overall spirit in preparation for it all. If you're just bubbly with positive anticipation all the time life will find ways to consistently let you down. Having some expectations that things will not always go well are part of learning to live life with a positive expectations while being grounded in the realities of our lives. In other words, you prepare yourself to live well whether it be through great times or tough times. Life will bring both to your door.

One very real story about Sloan-Kettering in NYC which fills me with hope is the experience of one of our church members. She fealt as though she was down to her last straw when her son took her to the big cancer center for the first time. But from that visit everything started to change. The doctor recommended a drug for her cancer that the FDA itself hadn't recommended yet for that cancer. Before long she had gone from a slump of fabric in a corner pew to walking into the church with her head held high and a tap in her step.

"Our Father who art in heaven, hallowed be thy name,
Thy kingdom come, thine will be done, on Earth as it is in Heaven,
Give us this day our daily bread,
and forgive us for our tresspasses,
as we forgive those who trespass against us.
Lead us not into temptation.
But deliver us from evil.
For thine is the kingdom, the power, and the glory. Amen."

I'll let you all known how we made out on this blog on Wednesday.

We'll never make that yellow light, never, never make it - HEY! We did!

Almost Home

2009-10-30T05:10:00.002-04:00

My Dad is scheduled for a CT scan today to take a closer look at swelling he has had through his mid-section into his ankles. For some reason he is collecting fluids, especially in his ankles. It certainly would be nice to discover the cause.

But regardless, the word on the street is that the nursing facility is going to give their blessing to have my father discharged my mid-week next week. The family has been very supportive of this move. We all feel that the nursing facility has served its purpose, and we are thankful. But it is past time for him to come home, home to the house he built, the home he knows, the place where he is most comfortable.

I can relate to his desire to leave the nursing facility. When I had my surgery I couldn't wait to get out of the hospital. It was impossible to relax. There was constantly people coming into my room, whether it be a janitor or a nurse checking my vital signs. There was constant "beeps" and "bonks" and "buzzes."

When my surgeon visited me I told him, "You know the hospital is a terrible place for sick people." I was surprised to see him so quickly agree. He told me after his father-in-law's surgery he took all the equipment and his father-in-law home.

I can already picture my Dad relaxed, enjoying the view from his home, and playing with Noel, their energetic three-legged dog. And I can already picture his smile.

Home is where he should be.

I wish I was in better shape to be more help. This is the time of my life where I should be offering help to my parents, and Barb's parents, not the other way around. I'm much more used to, and comfortable with, giving than receiving. It's definitely one thing about this cancer that does bother me sometimes. I always expected to be the strong guy who would pitch in and help other people out. I never expected to be in the position I'm in, so weak, so needy. All I can do is humbly feel thankful for all of the support that has circled around me.

All the reservations are set for our trip to Memorial Sloan-Kettering. We're scheduled to meet a kidney cancer specialist at 3:45 p.m. Monday, and I've been told to expect to be there for three-hours.

At this point the only possible kink could be my insurance company (big surprise there!). My family physician was having some problems getting a referral through Aetna since this NYC doctor might not be considered "in-network." I'm not going to let that get in the way of plans. With or without the insurance company on board, we're going.

I have always understood that my HMO requires a referral from my family doctor. The "in-network" stuff is news to me. I don't understand any significance to that other than another inane reason for the insurance company not to cover care. If my family doctor wants me to see this specialist then who is Aetna to deny it? Or what possible logical reason could they have to deny it?

It's not like I'm going to see a herbalist in Guatemala!

Susan is generously heading our way this morning to take me for my injection and then for bloodwork. First they'll inject some stuff into me, then they'll take some blood out.

You'd think there would be a way to do that all in one stick. (shrugging shoulders)

It's Like a Nice Dip in Cool Waters

2009-10-29T06:50:00.002-04:00

For the first time in weeks Barb and I don't have to go anywhere. No medical facilities, no nurses or doctors, no radiation, no needles, it's just us and Freckles.

Well we do have someone coming here, the guys from the natural gas company. From what we understand they are planning on increasing the pressure in the pipes through Marietta and they'll need access to our basement up to four different times today. I don't understand the benefit of increasing the pressure in the pipes. But that's why I'm an artist and not an engineer.

If they're rude we'll sick Freckles the attack cat on them.

The Phils won the first game of the world series in New York City last night. I've been a life-long Phillies fan so it was great news for me to wake up to. Growing up I would fall asleep to the Phillies on the radio every night a game was on. Although I was never a great baseball player, baseball has always been an important element in my life.

The same reason I like baseball is pretty much the same reason I'm no good at baseball. It is a laid-back, leisurely kind of sport. George Carlin did say it well, "Baseball is played in a park. Football is played in a stadium, War Memorial Stadium."

My difficulty playing baseball was the overall pace of the game. I would stand out there in the outfield, watching a butterfly, looking at the people who were out to watch the game, and then all of a sudden, "CRACK!" All of a sudden the ball would be flying in my direction and I'd have to go from standing still to running at full speed in half-a-second.

I did better with sports that had constant motion, like basketball or soccer. But I still loved to take in a leisurely afternoon baseball game.

Go Phillies!

Yesterday we pulled together all of the medical records that Memorial Sloan-Kettering required to book an appointment with a doctor there for us. It required a lot of phone calls and faxes and the phone rang through most of the day yesterday.

We still need to collect a few more medical records that we're expected to hand carry to Sloan-Kettering. Our main objective for today will be to secure train and hotel reservations. We were a bit surprised yesterday to learn that our first choice of hotel was completely booked due to the world series and the marathon both occuring in New York City.

We have found some available options. But we'll have to jump on those options early this morning.

I'll be talking to Amtrack to try to discover if really tall guys have any options at all for comfortable seats. When you're 6'4" you learn that the world is not necessarily built for you.

I learned this past week that I need to take two pain pills to get the effect that most people get from one. I learned that with the nurse's help. But that really is not something new to me. I've always known that I've needed a little higher than the recommended does of medicine that works for most people.

I haven't been on a train for many years. I imagine they're about as comfortable as an airplane. Airplanes do not work for me at all! So I'm really hoping a kind Amtrack employee can guide me into a comfortable seat.

So it's a day of trains, and hotel reservations, and gas company employees dragging their dirty boots in and out of our house. At least no one is planning on sticking me with a needle! Woohoo!

Warrior Mode

2009-10-28T06:56:00.003-04:00

When I first was diagnosed with cancer I met a gentleman online who had kidney cancer also and maintained his own blog. He was also in publishing and was an established outdoor writer and editor. He drew many others with this disease to his blog and he inspired many, including myself, to fight. He referred to everyone with kidney cancer as a warrior. He was in Georgia. We stayed in touch regularly. Eventually, sadly, he quietly passed away.

I've never forgotten his "warrior" term. It took a warrior, he would argue, to fight through this horrible disease.

I've always counted myself as one of those warriors.

I'm a pretty easy-going, very mellow guy. To me, anger or exciteability has just never seemed very productive. I see people, almost everyday, get so easily upset over some of the simplest things. It just leaves me scratching my head and wondering why.

As my treatment process has gone there have been plenty of highs and plenty of lows. It's the nature of the beast. It's difficult to know when a chemo stops working until bad things start happening in the body. As a "warrior" I'd just gather my strength and work the bad back into good.

But through the past few months, it hasn't been working that way. This warrior has been continuing to exert strength...but now I'm also starting to get ticked - ticked at cancer.

You can only get poked with a hot stick for so long before you stand up and say, "OK. Now listen. That's enough! Knock it off!"

I'm officially giving cancer fair warning - that's enough!

We are calling the big dogs in. An appointment has been made at Memorial Sloan-Kettering in New York City for this upcoming Monday. Sloan-Kettering is an entire hospital dedicated solely to cancer. The hope is that they may have some access to drugs that my oncologist may not. We still need to get them a copy of one medical report today. But otherwise the appointment is set.

We're going to travel to New York City on Sunday, stay overnight in a hotel, and then meet with the doctor on Monday, before returning home.

Barb and I are both anxious to see what comes from this consultation and are prepared to follow whatever course is recommended.

We'll make sure to wear our Phillies shirts. lol

Radiation has created a lump in the back of my throat making it virtually impossible to swallow and very sore when I do.

Radiation has created dry itchy skin on my chest.

Radiation has created a sour tummy.

Cancer has invaded a vertabrae, pinching nerves and leaving me in constant pain for months.

Pain pills create constipation. Radiation and Interferon injections created sleepiness.

This morning I woke up with an area of swollen, bleeding gums. Radiation also?

OK. What else do you have for me cancer? C'mon. Let's see what you've got. I'm ready. Give me your worst. I'm not giving up! LET'S GO!