Choices — November 3, 2014

On Sunday, November 2, 2014, two women with brain cancer made decisions that could change the way we look at cancer. 

Brittany Maynard was a newlywed of about a year when she found out she had cancer in January, 2014. Nine days after the initial diagnosis she had a partial craniotomy and a partial resection of her temporal lobe. Both surgeries were attempts to slow the growth of her tumor. In April, she learned that not only had the tumor returned, it had become even more aggressive. She was 29 and had six months to live.   After a great deal of research and consultation it was determined that there was little she could do to impede the ultimate victory that cancer would eventually claim.

Young and otherwise healthy, the cancer would destroy her brain while the rest of her body would continue to function. The last months would likely be a horror for both her and her family. The thought of dying in hospice, suffering daily seizures and receiving high levels of pain medication was not how she wanted to live out her life. This is not how she wanted to be remembered.

Brittany wanted to be in control of her own death. She moved to Oregon, one of five states that allow for death with dignity. Brittany would receive a prescription that would end her life and be given the power to administer it when she felt it was time.

Brittany became a spokesperson for death with dignity after she posted a video on youtube explaining her choice. It has received over 10,000,000 views.

https://www.youtube.com/watch?v=yPfe3rCcUeQ

On Sunday, surrounded by friends and family, Brittany decided that it was time to end her struggle.

Compassion & Choices, an end-of-life choice advocacy group who had worked closely with Brittany, said she "died as she intended -- peacefully in her bedroom, in the arms of her loved ones."

Having been raised a Catholic, I have always looked upon suicide as a sin. Now that I have cancer and with an understanding of how I will likely die, I have to say that I have to wonder if I have been too closed minded. As would have been Brittany’s, my own death will not be pleasant. Multiple myeloma, when no longer under control, destroys the bones. It starts with the larger bones and moves to the smaller ones. Bones become brittle and eventually break. In my own case, I had 29 areas that had been affected including a tennis ball sized tumor on my pelvis. My kidneys were shutting down and potassium and sodium were flooding my blood stream. I was lucky that chemotherapy saved my life.

I have seen both of my parents die of cancer. It was horrible. I cannot believe that this is what God wants. We have the technology to keep people alive long after they should. Sometimes past the point of cruelty. It is not my plan to end my life when it becomes hopeless, but I can certainly understand why someone would. Is it really suicide when you are already dying?

On the other side of the country, in Cincinnati, Ohio, Lauren Hill was having the best day of her life.  Lauren, too, is dying of brain cancer. There is a good chance she may not see Christmas. But Sunday, she didn’t think about that. She woke up at four in the morning with a terrific headache. It was so severe that later that day she would have to wear sunglasses and headphones to drown out the light and sound. That would not keep her away from completing a dream, the dream of playing college basketball.

It was just a little over a year ago that Lauren announced on her birthday that she would attend Mount St. Joseph’s University and play basketball. Less than two months later she found out she had brain cancer. In September, she was told that she had months to live.

The University then petitioned the NCAA to be able to play their game against Hiram College two weeks earlier than had been scheduled so Lauren could fulfill her dream. The game was moved to Cincinnati so her friends could attend. Forty five minutes after the tickets became available, Cintas Center and its 10,500 seats was sold out. This was for two teams that normally would have 100 family members and friends show up for a game.

Hiram College and its coaches and athletic department were completely on board even working with the Mount St. Joes coaches to allow Lauren to score on the first possession of the game. A backdoor screen was run for Lauren so that she could move to her right which would allow her to shoot with her left hand. Although right handed, she has been forced to shoot with her left hand as the cancer has begun to disrupt her body movements. After scoring, time was called and everyone in the arena celebrated including the Hiram coaches and players. 

Lauren has made it a point to bring attention to the plight of those with pediatric cancers. Tens of thousands of dollars have been raised for this cause. Lauren has issued a challenge to Lebron James and others in her own version of the ALS Ice Bucket Challenge.

http://www.youtube.com/watch?v=PF023AEUOtk

Fox Sports Ohio televised the game and it was streamed nationwide on the internet. After the game an emotional Lauren summed up what many were thinking, "To reach and touch this many people is amazing. Not many people knew about DIPG before me, and now that they do, we can get research going to cure this cancer. I won't be around to see that, but it's going to help so many people. That's why the support can't end with this game."

Both of these women have touched millions in their own way. Hopefully, we will see increases in cancer research so that we can experience an end to this killer in our lifetimes.

In my own little world things are going well. I continue to receive good results with my blood tests. I have been in remission without the help of chemo for 16 months. I never thought I would be able to say that. Now the goal is to see just how far I can take it.  The Leukemia and Lymphoma Society Light the Night Walk is this Friday. If you haven’t had an opportunity to donate, please do. It will be my sixth walk. I hope to be doing this years from now.

http://pages.lightthenight.org/az/Phoenix14/TeamOutlaws

September 3, 2014 - Twenty-One

Is was twenty one years ago today that Jason came into our lives. Jason was the quiet one even before he was born. He was very restful before he breathed his first breath unlike his maniac brother.  Justin was always moving, often reminding us of the creature in the movie “Alien.” It wouldn’t be a surprise to see a foot or a hand trying to push its way our of Julia’s stomach. Jason, on the other hand, was content to just relax in the warmth that the womb provided.

Their personalities didn’t change a great deal after they were born.  Justin was always moving, refusing to sleep. He walked at seven months and would climb anything that wasn’t moving. Jason also walked at a fairly early age (nine months) but he did it in a more cautious manner. Justin would fly across the room, invariably smashing his face into something while Jason was steady and calculating in his movements.

When Justin would jump onto our bed, he would immediately stand up and analyze his chances of death if he jumped off, then dive.  Jason was fine getting up there, but would more likely take his time getting down not risking life and limb like his brother.  There was never a minute that Justin was clean. It seemed the second we put his clothes on him, they were filthy.  Jason was just the opposite. There were times that he would get a little water on his shirt before going to school and he would have to change it to stay perfect.

Justin was well known in the neighborhood for his antics with his toy cars.  If they lasted three months without some type of cataclysmic accident, it was only because he forgot about it. You have no idea how many die cast cars I found in the back yard that looked like they had found the business side of a sledge hammer. Jason would line his cars up in straight lines just to make sure they all looked good.

When Jason was two years old, he had a vocabulary of five wolds, highlighted with the usage of the word, “no.” Justin would talk your ear off at two which is probably why Jason didn’t have to talk much when he turned two. He had Justin to interpret his grunts and as a result didn’t need to talk. We were so concerned that we took him to a speech and hearing clinic to see if he had hearing loss. Instead, we were told that he had an excellent vocabulary and was just too stubborn to talk. For years this has been an area of discussion between Julia and myself as to whom he got that from.

When each of the boys turned three, we took them for formal portraits in keeping with the tradition started by Julia’s family, taking each of the children on their third birthday to get their picture taken.  Justin practically ran the photographer out of film. He loved being in front of the camera, often posing himself without a hint. Jason had to be coaxed to even smile for the camera. The day could not have been over quickly enough.

It has now been 18 years since that third birthday. Each of the boys have changed in their own way. Justin became the fashion plate with gym shoes matching the color of his shirt and Jason became the kid that you would only see in gym shorts, a baseball tournament tee shirt and one pair of Nikes all in white and black.  But, I guess we all change at our own pace. There is no one template that we follow.

When Jason went away to school we began to see him change.  Although he went to South Dakota to play football, it was probably an injury the first week of spring practice that began the change. It seems Jason learned more outside the classroom than he necessarily did inside. When he returned and made the decision to not return we began to see subtle changes in our quiet son.

Instead of tying all of his friends to the particular sport he was playing he started to branch out. He still had friends from high school football, but he started to make friends at the gym and at church. When he started a job as a student ambassador at his college he added his fellow workers to the mix. But the biggest change came in his interactions with other people. Being forced to be on stage with others during student orientations, he became less reserved and more outgoing.

He then decided to expand his gym workouts to enter a Physique competition. This forced him to go on stage in front of 1,000 people wearing just a pair of shorts.  If that doesn’t force you to break out of a shell, I don’t know what would. Then given an opportunity to begin an internship where I work, he had the opportunity to speak with hundreds of our associates before our biggest event of the year. At that event, he was a spokesperson for our IsaBody Challenge speaking to many of the 10,000 people in attendance.

Now at 21, the boy we thought might have a hearing problem, has grown into a man that will likely make his living talking to people about nutrition. It is amazing how we change in life and what molds those changes. I cannot say how proud we are of both of our boys as they have become their own people. Jason might actually be happy to get his picture taken now.

It has been a while since I have written as I have just enjoyed my renewed good health.  I have been off of chemo for over a year now and my most recent test all came back with good results.  As I have often said, you should use every moment of your life to enjoy the gifts we have been given. I feel like I have been given additional years that I fully intend to take advantage of. I might even find time to write now and then.

January 22, 2014 — Time

Time is a funny thing. We live our lives knowing that there is only so much time that is allocated to us, yet we either waste or wish away significant portions of that allocation. The amount of time that I have wasted just waiting for something to happen is ridiculous.  I don’t even want to think of how much time I have wasted sitting in a doctor’s office, or waiting for a red light to turn to green or for the pot of water on the stove to start to boil.  I dare not even try to calculate how much of my life has been wasted on sitting through commercials.

When we are young we think we have all the time in the world.  We also think it takes forever for things to be completed.  I’ll never forget sitting in my little wood desk while in elementary school watching the clock tick at an amazingly slow pace.  Waiting out those last two weeks before Christmas was excruciating.  Crossing out and marking down the numbers of days left until summer vacation on one of my notebooks could not have taken longer.

Things don’t change much as we grow up as we count down the number of hours left until 5 PM on Friday and we finally have our lives back.  For some reason a day at work takes a lot longer than a day of vacation. Time never seems to be on our side.

The thing that really jumps out at me when I take a look at my life is how far away the future seems, yet the past seems so close.  How many times have you tried to guess how long ago a celebrity died? I’m not sure how good you are at it, but I stink. I almost always think they died much closer to the present than they actually did. 

Not sure how many of you are “Gilligan’s Island” fans, but I always have followed the characters as they lived out the rest of their lives. I was always a fan of the “Professor” and when he died last week, I tried to remember how long ago Bob Denver died. I vaguely remembered that it was four or five years ago. It will be nine years in September. How long ago did Jim Backus (Thurston Howell, III) die? Would you be surprised to know that it will be 25 years in July? 

Completely off topic, but I preferred Mary Ann to Ginger.

I’ll never forget when Harold Kidwell, my boss from, oh-so-many-years-ago always talked about how you should double the time that you think something happened when you are trying to pinpoint how long it has been.  I have found this to be pretty accurate when I really don’t know the specific year that something happened.

All of this brings me to the point that it has been five years that I found out that I had cancer.  I’ll never forget the call I received from my doctor stating that my kidneys were in failure and that I was at a high risk of a heart attack and that I had better get myself to the nearest Emergency Room as quickly as possible. It seems like it was yesterday. I still sit at the same desk with the same telephone at my side. It could have happen yesterday if I would believe the vividness of that memory.  Even with all I have gone through, I would never think it has been five years.

When I saw Dr. Mikhael last week to go over my test results, I had to ask him a question that has lingered with me for some time.  Because I am still in remission, I felt a little cocky and I asked him, “When you saw my original results five years ago, did you think I would see 2014?”  I really wasn’t sure what he would say. If you asked me that same question back then, I would have given a definite “No.”  From everything that I had read, I felt that I might have a couple good years left and the inevitable was bound to happen.  Don’t get me wrong, I was going to give it everything I had, but the disease had progressed pretty far and the average life span was 27 months for someone in my condition.

His answer surprised me at bit. He said he thought I had a good chance to make it to five years, but not a great chance.  Funny thing with cancer, you never know what is going to happen.  If there is a 95% chance you will not survive, that means that one out of 20 actually do survive. That is why you never give up. You may be that one out of 20.  He did say that I probably have a better chance of lasting another five years than I did to make the first five years. The miracles of cancer research continue to give all of us survivors hope for a future.  Even though that future may seem to take forever to get here, I’m looking forward to it.

December 9, 2013 -- Remembering our Past

This Christmas is a turning of the page for me. This is not some earth shattering thing, but for some reason, it is important to me. You will probably think I am crazy to even think about it, but let me explain.

I finally broke down and bought a new Christmas tree.  There it is. It is out in the open.

Sounds simple doesn’t it? I guess it isn’t the buying of the new tree, it is the realization that I need to throw one away.  You see the tree that will be thrown away is the one that we have used every year since Justin was born. It has been in dozens of photographs and hours of Christmas videos. It is really the only tree that Santa has left presents under for the last 22 years.  It is the tree that Justin almost knocked over when he was five and sprawling under to get his next big gift.

I have always been a Christmasaholic. I was the guy that was going elbow to elbow with all of the crazy women shoppers at Hallmark the day after Christmas.  One year when we were staying with Julia’s parents we went to a mall that had two Hallmark stores and sent Julia’s brother running back and forth between them so we knew what each other was buying (pre-cell phone days.)

It was 23 years ago that Julia and I fell in love with a Christmas tree that was way over our budget. Today it would be a bargain, but at the time it was rather pricey. We waited until after Christmas hoping that it would drop more than the typical 50%.  We waited and waited but there was no further dropping of price.  It was February and the tree was still in the window just taunting us.

It was February 8, 1991 and we decided to drive across town to see if a miracle had happened and the price had dropped. The store was closed and I can remember Julia staying in the car while I went up to again check  if the price had dropped.  We decided to head home still debating if we should just splurge and buy the tree.

Just a few hours later, Julia went into labor and we were soon holding our first born.  The tree search became part of one of the most important nights in our lives.  After we returned home with Justin, we bought the tree.

The 21 Christmases have been wonderful, but there isn’t enough shipping tape to hold the old thing together. It was time to move on.  As a result, there is a Costco 9 foot tree with blinking LED lights flashing between white and multi-colored standing in our family room. It will be beautiful on Christmas morning, but there will still be something missing.

Sometimes in life we attach important moments or times in our lives to inanimate objects. For whatever reason, they bring back memories that are worth far more than the object ever was.  I have hundreds of old science fiction books that my dad read in the 1940’s and 50’s sitting in the basement.  I still have a couple of the sets of clothes that I wore as a baby that my Mother loving set aside. We keep mementoes from our senior prom or ticket stubs from our first game or concert. To someone else, they mean nothing, but to us, they mean the world. We always want to move on, but we love where we came from, sometimes is the strangest things that take us there.

Julia lost one of her dearest friends this last week. Robyn Driscoll fought a seeming endless war against breast cancer for almost a third of her life.  Robin was a fighter that refused to give in to the monster that stole her life well before her time.  But that was just a small part of who Robin was.  Everyone has nice words to say about someone after they die, but Robyn’s were completely deserved. She was a thoughtful, loving person that will be missed by many. Please keep Robyn’s family in your thoughts and prayers.

I feel so lucky with where I am in my own battle as I remain in remission heading into the new year.  We get caught up in our own lives sometimes, especially at Christmas.  Keep those that are fighting serious illness in your thoughts and remember to give a little gift to your own special charities as you never know when a cure might be found or a person’s life changed by your thoughtfulness.

November 4, 2013 - Light the Night

Cancer.  It is inevitable.  At some point in your life, you will be confronted by this disease. It will either be a loved one, a friend, a colleague or quite possibly yourself. In 2010, a study was released that stated there is a 41% chance that each of us will develop cancer in our lifetimes. Every four minutes someone in the United States is diagnosed with a blood cancer and, every 10 minutes, someone loses their battle. Approximately one million Americans are currently battling blood cancers.

A little less than five years ago, I had that unenviable talk with my doctor that I had become one of those with a blood cancer.  At the time, I wasn’t sure if it was a death sentence or not. The average life span for someone contracting Multiple Myeloma and finding it in Stage III was 27 months. I really didn’t know what to think. I knew that both of my parents and several other relatives had died of cancer. I couldn’t help but think that it might be my fate, too.

The bad thing was I had cancer. The good thing was a number of new chemotherapy options had recently become available and more were on their way.  I began my first round of chemo within days and followed with a stem cell transplant.  Two years after the transplant, my cancer had returned to the point that chemo was again necessary. I then started a protocol that works for most but, unfortunately, didn’t for me.  Six months later we tried a new regimen that has worked miracles for me for over a year and a half. I am able to write this today because I had options. Aside from a cure, that is what cancer patients need.

Because of your helpful donations to the Leukemia and Lymphoma Society’s 2013 Light the Night Walk, more blood cancer patients may also have options in the future. We all hope for a cure for cancer, but it is only through donations that this will ever happen. The Leukemia and Lymphoma Society not only helps fight for a cure but they also help patients and their families’ work through the difficulties that many of us face when confronted with cancer.  This ranges from research to medical bill assistance to counseling for both patients and their family members to group gatherings so that cancer patients can interact with others that are facing the same issue and learn about new advances in their treatment future.

We set a record for TeamOutlaws last year collecting over $4,000.  Please help us again gain an upper hand on cancer this year by visiting:

http://pages.lightthenight.org/az/Phoenix13/teamoutlaws

Thank you again for all of your help over the years. As it is every year, I hope to continue this tradition next year and for every year that I can. Help us beat cancer. The walk is this weekend and we are nearing our goal of $4,500 in contributions.

On a personal note, I have been in remission for four months now and chemo free.  It is a month to month proposition but it is a wonderful feeling knowing that I am where I am.  I have a blood test in another week that should give me an idea if things are continuing to go well. Stay tuned.

September 26, 2014 -- On the Road Again

It seems that having a bucket list is a rather trendy thing to do. As always, I am anything but trendy. I have never been one that has worried about a bucket list. Since I became sick, I have had a good deal of time to contemplate all of the things that I have missed in my life and to be honest with you I just don’t feel like I have missed anything of real significance. I suppose there are some things that I have never seen that would be amazing but I’m not sure that I want to fly to Egypt to spend 45 minutes staring at the pyramids.  It would be exciting to walk along the path that Jesus traveled during his life, but I’m not sure I want to be worried about dodging a stray bullet or bomb along the way either.

All in all, if I happened to get hit by a bus on the way home, I would have to say that I would have been very happy with the life I have led and the things that I have experienced.  There are some things that I miss though, some things I would like to do again.

It would be nice to wake up in the morning and not have half of my body screaming at me to stop moving so fast as the other half creaks as I get to my feet.  It would be nice to comb my hair after a shower without having to be a landscape architect to cover all of the bald spots. It would be nice to be able to read without having to find my six dollar Costco glasses first.  It would be nice to remember where I put my glasses or my keys or my wallet. It would be nice to be able to do something athletic and still be able to move the next day.

One of the things that I did when I was younger and can still do is drive.  Back in the day when gasoline was $0.50/gallon, it would make a lot more sense to drive to a vacation spot than hop in a plane.  Driving from Ohio to Florida was no big deal.  I would start at in the evening and drive for 18 hours straight only stopping to get gas. If you had to pee, you better make sure that you timed it for when the gas tank was empty.  I would order a pizza or two and put them in the back seat to dine on during the trip.  A Trip-tik from AAA was the way to go. It was light years ahead of having to read a map while driving.

It didn’t seem to bother me that I would have to make the same trip home in seven or eight days with nothing to look forward to except work on Monday morning. I would get to see parts of the country (albeit at 75 miles an hour) that I normally never got to see. The heavily wooded hills through Tennessee, the red dirt of Georgia and the smell of dampness when you finally got to Florida all made it worthwhile. Of course, avoiding radar and finding a “caravan” made it even more exciting. How I stayed up all night and never seemed to get drowsy amazes me to this day.

When Jason decided late this summer that he did not want to return to school in South Dakota, it created a dilemma since he had a storage unit filled with clothes, supplies, a TV and mini refrigerator.   It was of enough value that we didn’t just want to walk away and eventually see Jason’s stuff on “Storage Wars” so we had to come up with a way to move his various boxes 1,300 miles without having to take out a second mortgage on the house. Julia looked into moving companies and found them to be ridiculously expensive.  She found another route that was more affordable but it would require someone to get his things ready to move and then wait around for the shipping company to show up.  Both of these were doable but it just didn’t seem like the “best” way to handle the situation.

It seemed to me that I would have an opportunity to relive my youth and get to have another one of those crazy driving road trips.  Well, I can’t drive for 19 consecutive hours anymore, but I sure can drive for six hours and take a break, have someone else drive for a while and eventually find a hotel to sleep off the stiffness of sitting in a car for 12 hours. Jason was soon designated as my co-pilot and plans were starting to be hatched. Julia thought I was an idiot for doing this, but she just never could understand the enjoyment of the quest.

I had everything planned that I could including getting an SUV from Enterprise for the trip that we were going to pick up Tuesday night so we could get on the road at 6 AM and miss all of the traffic.  As I stood at the Phoenix airport Enterprise counter, I came to the realization that I was in the middle of a senior moment. When I set up the reservation, I limited my search to airports only since most off-airport locations rarely have specialty cars. Little did I know that I had actually made the reservation at a Scottsdale location. 

I called the Scottsdale location and was told they closed in 20 minutes. If I got there in 19 they could handle me, a minute later and they would have shut down all of their equipment.  I then started to break every speed limit posted between the airport and Scottsdale yet hit virtually every red light.  We pulled into the lot at 6:04 PM and watched five people pull out, one even rolled up his window as Jason approached.  This was not the way to start the trip.

When we got there at 7:30 the next morning, I went through the normal procedure to get the car which took about 15 minutes. However, when I got in the car, I found that the fuel light was on which added another 20 minutes to our wait.  This was starting to look like a mistake.

I took the first shift and the old thrill started to return.  Nothing like being on the road driving through new places.  I was going to add New Mexico, Nebraska and Wyoming to my list of states and all was good.  Jason and I got to see a camel farm, deserts where there should be green and green where you would think there should be desert.  We were able to visit the largest motorcycle rally in the world.  We made hotel reservations as we drove and hit Hooter’s with regularity. It was a good old road trip with everything but the beer and the women.

When we returned four days later with an SUV filled with Jason’s belongings and a wallet emptied by the cost of gas, we had accomplished what we had set out to do.  We had made it home with all of Jason’s things still working and had managed not to be run off the road by a semi or some other crazed driver late at night.  But what we came home with was something more, something that I had not counted on.

You see, the thing that you don’t think much about is what you are going to do for four days in a car. This was not going to be a trip where we stopped every few hours to see the sights. It was two days in the car getting there and two days back. It was just us and the freeway.  But what it turned into was something special.  Imagine four days in the car with your soon to be 20-year-old son with nothing to do but talk.

Jason has never been much of a talker.  Very quiet and sometimes an island, Jason opened up.  In the end, if I would have had to pay him by the word, I would have been even more broke.  We talked about anything that suited us at the time. There were no preconceived notions of accomplishing this or that. It was just talk.  I think I learned more about my son in those four days than I had in the previous four years. 

All of this just reiterated what Julia and I have thought for a long time.  Although far from perfect and certainly not a carbon copy of either of us, we have a great kid that makes the right decisions and does the right things. I’m not sure even he knows what he will be doing moving forward in life, but I feel pretty confident that he will continue to make the right decisions and continue to be the type of person you can only hope for when you hold your child for the first time.  It’s funny, you start out worrying about how far you will get your first day and in the end you come home with a whole new perspective on your kid.  Next time you have a chance to entrap your kid in a car for a few days, give it some thought.

September 10, 2013--Twenty Five and Counting

It was a day like most in Ohio in the Fall. The morning air was crisp and clean with just a hint of clouds in the sky. It would turn out to be a nearly perfect day with little or no breeze, temperature peaking at 72 degrees and the sun kissing the last of the summer flowers.

It was certainly a great day for a drive, even if it were just for a pizza and some ice cream. Because there was nothing else to do at the time and there is nothing better that a good pizza, the drive was going to be just a bit longer that one would expect. It was down to Cincinnati and LaRosa's. If you are not from the area and have not had LaRosa's, you have no real understanding of why someone would drive that far for a pizza. You would probably also not quite understand why someone would drive several miles out of his way just to buy 15 cans of LaRosa's sauce to jam into his suitcase to bring back to Arizona.

However, the real reason to go to Cincinnati was to get some Graeter's ice cream. At the time, few in Columbus understood the significance of Graeter's ice cream. Since that time it has been on many top 10 listings of ice creams made in the United States and opened several locations in Columbus. What is more important in life than ice cream, especially when you are talking about making it part of a special celebration?

You see, that day that was going to change my life.  I was 34 at the time and was doing OK for myself. I had a good job, a little money in the bank and other than a mortgage, had no debt.  I had good friends, went on nice vacations, had a two seater sports car and just about everything I wanted. But I was still lacking something and on September 10, 1988, that lacking would go away. On that day I married that most beautiful girl in the world. On that day, I finally had everything I really needed.

When we stand in front of the priest, minister, rabbi or justice of the peace and commit to be with the same person for the rest of our lives we really have no idea what we have committed. At that point, it is all about the amazement of the day. In reality, it is work. It is never easy no matter who you are. If you are going to make it work, you have to want to make it happen. Happily, both Julia and I have wanted it no matter how hard or easy it was.

From the outside, we are almost always amazed when we find that someone is going to get a divorce. That is because we are, more often or not, shielded from the difficulties that people go through.  Julia and I have had difficulties just like everybody else but we both realized that we were pretty darn good together despite whatever stumbling block we were facing at that point in time. We never game up because we knew what we had was right.

It is now 25 years later and she is still the most beautiful girl in the world. It doesn't matter that we have a few more pounds to lug around or have a wrinkle or two more than we had in 1988, our feelings have only grown more intense. I love Julia more today than I ever have. 

She knows all of my quirks and imperfections and she still loves me. She puts up with my love of the Browns, Reds and Flyers. I know she doesn't actually hear me when I talk about them, but she makes it look like she does and that's all that really matters. It doesn't bother her (much) when I come home and just plop on the couch or if it takes me a month to change a light bulb because that's what marriage is about.

We know who we are now. It's not 1988 and we think we know what we are doing. We actually know all of the things that drive us nuts about the other and we don't care, because we know what we have it is far more than that. We have each other and that is all we need.

Now if she can just put up with me for another 25.

I love you baby doll.

August 5, 2013 - July 13, 1913

It was the middle of July in 1913 in a small mining town in western Pennsylvania that Sophie and John Churan welcomed their first child into the world.  Times were different then.  He wasn’t born in a hospital surrounded by scores of doctors and nurses with equipment buzzing everywhere.  Little Andrew was never really sure what his actual birth date was but celebrated July 13 as his birthday because that was when his birth was recorded at the county offices.

 

The world had yet to see its first global conflict. Telephones were a luxury as less than 10% of homes had one and the first coast to coast telephone call wouldn’t happen for two more years.  There were less than one million cars in the United States. If you could afford one, it would cost $800. Trains were the ideal mode of long distance transportation as the first commercial scheduled flight wouldn’t happen for six months. The Titanic sank the year before but there was no CNN to let everyone know. The newspaper, almost dead today, was the best means of circulating the news. They were available daily with special editions available when news broke.

The first public radio broadcast had only occurred three years earlier and it would be another decade before radios became a popular household item.  Movies were fifteen minutes long and Charlie Chaplin was going to sign his first movie contract the same month. The thought of a television would have been laughable.

There were no large grocery stores. A loaf of bread was a nickel, a pound of steak was twenty cents, a gallon of milk was thirty five cents and penny candy actually did cost a penny.  That fifteen minute movie would cost you seven cents.  The average wage was $0.22 per hour and most took home between $400 and $600 per year.

In 1913, the life expectancy for a man was 50 and for a woman it was 55. In the last 100 years, that expectance has increased by 50% to 75 for men and 81 for women.  In many ways our lives have gotten easier and our health system much better which has allowed us to live much longer than our ancestors.

The world in 1913 seems more than 100 years ago in many ways.

My dad lived a life that was simple in nature but he tended to enjoy whatever it was he was a part of. Family was all important to him throughout his life as I remember relatives always being over to our home. That probably came from the close relationship he had with his mother and younger sister, Margaret as his father died when he was five.

He was as different as can be when compared to my childhood. I was sheltered from everything as my mother felt that I would die for sure if I was exposed to just about anything. My kids still love to make fun of me whenever we talk about the fact that I had to learn how to ride a bicycle at the age of 13. In comparison, my dad had to move away from home and work on a farm to help support the family at the age of 14.

At 14, he was a big as he was ever going to get. He was strong as an ox and earned every dime he was paid.  Mature beyond his years, one of his favorite stories was when some of the men he worked with put him up to fight one of the other men that worked on the farm as a cheap form of entertainment.  Dollars were wagered on both the boy and the man. They were put inside of a box car and only the winner was to walk out of the car.  There was straw and cow manure everywhere but that didn’t slow either of them down. He gave the twenty something man everything he could handle and walked out the victor. He was tough but five years later he met his match and she was anything but the rough and tumble man my father had become.

When he met my mother, Julia Pregon in 1932, his world changed. From the very first moment he saw her, he knew she would be his wife.  For 41 years, they loved, laughed, fought, cried and worked together.  My mother was just as ambitious as my father and smart well beyond her ten years of education. Individually they were strong, but together they were special. We all hope to have a life with another person as they did. When he lost her, he lost a bit of himself, I’m not sure he was ever the same.

He lived through the depression and learned the value of a dollar at a young age, something he never forgot.  Always hard working, he worked full time until he was 70. He was never a rich man, but one that enjoyed the simple things like reading a book, playing cards or just taking a walk.

His greatest thrill in life aside from yours truly was when Neil Armstrong set foot on the moon.  His love of science fiction was with him for decades.  In 1969 when we saw “2001: A Space Odyssey” it as if all of those years of reading paperbacks all came true.  Not sure why I have held on to them, but I still have hundreds of science fiction books that my dad read from the 1940’s on.  I guess it is just my way of hanging on to him a bit.

He lived to be 77 and he saw the world change around him unlike any generation before.  The only thing he really missed was the birth of a grandchild as died three months before Justin’s birth. He had waited so long to hold his son and just couldn’t hold on long enough to hold a grandchild.  Hopefully, both he and my mother have enjoyed seeing the boys grow and become the wonderful men that they are.  He made a real difference in my life. I can only hope I will make the same in theirs.

July 7, 2013 -- The “R” Word

As we go through life, we are given many rules, things we need to do and things we need to avoid. Words have become one of the problem areas in our country as we become more politically correct. Paula Deen has become a pariah and lost a fortune because of her admitted use of the “N” word.  Cancer has become common place in many of our lives as more and more friends and relatives are affected. We sometimes choose to avoid the use of certain words like cancer and refer to it as the Big “C”.  I have had one word that I have kept out of my vocabulary in the past few years, not because it was a bad word, but because it was a word that seemed so foreign to me.

When I was diagnosed with Multiple Myeloma, the first thing that I had to wrestle with aside from the fact that I was now part of the Big “C” clan was that it was incurable. MM is referred to as being a treatable yet incurable cancer.  Certainly treatable, but over 10,000 people still die in the United States every year from this form of blood cancer.  It was very hard for me to wrap my head around having to deal with this cancer for the rest of my life. 

I’ll never forget an online webinar that Julia and I tuned in when the guest speaker said that we basically have a cure because we have many options for chemotherapy.  Obviously, this doctor hadn’t spent much time sitting in a cancer clinic La-Z-Boy with a needle in her arm. Waking up every day for the rest of your life knowing that there was no end to being treated, isn’t an easy pill to swallow.   Yet knowing the alternative is death puts a whole new spin on it.

When I received my stem cell transplant, I held out the hope that although not cured, I would be able to say I was in remission.  Despite doing everything I needed to do when I received my transplant, it just didn’t do everything I had hoped.  Although I was in a state of “very good partial” remission, I still had the cancer with me every day.  Every day I worried if it was getting worse.  Five months after I received the transplant, my numbers started drifting up and I was certain that the transplant had given me little more than an additional six months of life. It was no way to spend Christmas.

I was so worried that I talked Dr. Mikhael into letting me have a blood test two weeks later to see if things had changed.  The fact that I would suggest to a doctor that I wanted someone to stick a needle in my arm shows exactly how nervous I was about the previous result.  The results were better and the cancer seemed to settle down for the next year as I lived my life without chemotherapy.

Then in January, 2011 it became evident that the transplant had run its course and the cancer was getting stronger with every blood test.  It was slow and gradual, but every test got worse.  In July, I began chemo again. It wasn’t too bad as it was just a pill, but there were some unwanted side affects that would not go away.  I had given the transplant its shot and it helped, but I was never going to be able to say that I was in complete remission.  It was something that I could live with, but not something that I was comfortable with.

Six months later, despite doubling the dosage, it became evident that the drug that worked for most people would not work for me.  My cancer was now almost as bad as when we found it originally, three years earlier.   Like most cancer patients, I was ready to move on to the next chemo.  As a cancer survivor, your hope is that the next therapy will work better than the last. You are not always rewarded, but you continue to hold out that hope.  The next attempt would be a cocktail of two different chemotherapies and a steroid.  I had hope, but I have learned to never get too high or too low, just hang in there.

When I received the results the next month, I couldn’t believe my eyes.  There results were better than I had every received, even better than after my transplant. Could this be the “magic pill” as they say in business? It was so unbelievable that I called Megan Connelly who had been my transplant coordinator to see if there was a typo.  It still wasn’t in the normal range, but the change was drastic from the previous month.

The next month was even better as I entered the normal range for the first time ever.  I remembered the phrase, “no cure but treatable.” It seems that I might actually know how that feels. The months moved on and the results remained amazing even as we extended the time between treatments.  Over the next 14 months I moved from having a treatment every week to once every three weeks, yet still the same results.

In April, 2013 Dr. Mikhael made the decision to move the treatment to once every four weeks and to not have another blood test for three months. I had never gone that long.  The Nervous Nellie that I am was at full strength. Elongating the treatment cycle and not checking for three months, was this man mad? I tried to put it out of my mind, but it was always there. This was going to be the most important test of my life.  Just like on the “Bachelor” when they have the most intense Rose Ceremony EVER, this would be the most important blood test EVER.

The nice thing about going to the Mayo Clinic is that you can get results online in a matter of hours on the majority of tests and within 24 hours on the important cancer number. When I got the results I was able to breathe a sigh of relief as the numbers were as good as I had ever received.  I now knew that I could stay with treatment just one time each month and as a result have less side effects and a more normal life.

That was on Wednesday and I had an appointment with Dr. Mikhael on Friday. I really just expected the same pleasantries that we always have when things are going well. We talk about our lives and schedule the next appointment.  Then my whole life changed. Dr. Mikhael used the “R” word, a word that I had given up using and even hoping.  He said I was in remission.

The words rang in the room. I was in remission.

I was always going to fight the fight, but I never thought I would be here. I never thought I would ever be off chemo for as long as I was alive.  But the words were said. I was in remission.  Now understand, Dr. Mikhael in the same breath said that the cancer would come back. This wasn’t forever. But somehow, that didn’t matter. It could last three months, it could last three years, we won’t know until it is over. But I’m going to be enjoying this time cancer free.

To complete the circle, the first person I told was Megan.  She has moved from stem cell transplant coordinator to being a nurse in the oncology area at the Mayo.  From being the first person to help me through my transplant to being the first person that knew other than Julia and I that I was in remission.  Somehow it just seemed right.

 

Thank you all for keeping me and our family in your prayers through these 4 1/2 years.

 

 

 

March 27, 2013 - Beautiful

When I return to my home town of Dayton, Ohio I always make sure that I go by places from my past, places of familiarity. I always like to run by the house that I grew up in, always hoping that it might be for sale and I could act like an interested buyer and take a look inside.  I’ll even run by the baseball field that I hit my lone home run as a young baseball player.  Lastly, I will run by Calvary Cemetery to visit my parents’ graves. I’m not sure that they can hear me but I always have something to say to them. It always brings me a little closer to my past and all that they meant to me. Familiarity is important to all of us.
 

Nurse Gerri Wensloff at Four Winds Hemotology.

Since I started this journey four years ago there have been many, many people in my life. I have had hundreds and hundreds of blood tests, twenty five radiation treatments, fifteen immunization shots, two cataract surgeries, two bone marrow biopsies, one kidney biopsy, two complete sets of body x-rays, multiple MRIs and somewhere around seventy five injectable chemotherapy treatments. Through all of that I have had four constants, Mr. Mikhael, Dr. Obenchain, Dr. Hogan and Gerri Wensloff.

Gerri works for Dr. Obenchain and she was the very first person to inject me with the poison that has kept me alive for those four years. I’ll never forget the day that I showed up for my first treatment of Velcade and Doxil.  Understand, I have never been one to appreciate having a needle stuck in me. As a kid I even passed out when I received a shot. Let’s don’t even go into how many times I have been a bit shaky when I have had a blood test. The thought of getting an IV and sitting there for four hours was not exactly something that I had on my bucket list. You hear about the horrors of chemo and you just never know what to expect.

Yet Gerri was there for me during the entire four hours even missing lunch to make sure I was comfortable and not dying from some type of allergic reaction to the chemo.  She didn’t have to do that, but that is who she is.  I don’t think that you could find a more likable, caring person to deal with this dreaded disease.

Until you have experienced being in that room, it is impossible to comprehend what is taking place. This isn’t like the dreaded trip to the dentist when you know a filling is coming. That feeling comes and goes and you are pretty much by yourself. When you receive chemotherapy, you are in a room with five, six or seven other people that are going through the same thing.  We are all at different levels of potential death and none of us know who will be back next week. You all hope that this will be the answer, but you never really know for sure.

Some of us like to talk to those around us while others try to sleep away the experience because of the pain, nausea and general tiredness. Yet, Gerri always seemed to know how to deal with each of us. If we wanted our peace, she gave us that. If we wanted to talk about what was happening, she gave us that. As you can imagine, I was a little different.

Over the last four years I have received everything from Gerri from a hug to banners with my name on them to a fake trumpet serenade to a pole dance (yes, you heard that right.)  She even came in on her normal day off just because she knew I was going to be there. She has always known what I needed. But now I will have to continue my journey without her as she will be returning to Indiana to be with her family and a new grandchild. I’m sure we will both move on as you always must, but it will never be the same; I will forever miss that familiarity, that caring touch.

There are younger and prettier nurses than Gerri but I am not sure that I will ever know a more beautiful one.

March 21, 2013 -- Incomplete Cremation?

While Jason was home for spring break, he and I decided to take in a Coyotes hockey game. Neither of us are huge hockey fans but we had gone to a playoff game last year and had a good time. Since he was stuck in Chandler for his week off, I thought that it would be good to get him out of the house as he wasn’t on a beach in Mexico like half of the college kids seem to be doing these days.

The area around the hockey arena is an entertainment complex with restaurants, bars and shopping. In addition, on top of the buildings, they have a number of rather large billboards, one of which caught my eye. It stated that you could get a “Complete cremation for $586.25.” This brought to mind a couple of questions. The first of which was, “What am I getting for that extra $0.25 that is included in the price?” The second question was even more important, “If I can get a complete cremation for $586.25, how much would an incomplete cremation cost and just how big would the chunks be?”

This might seem trivial to most of you but the cost of a funeral can be huge and as much as most of us like to avoid the discussion, we will all have to go through the process of death and a funeral. Julia and I have had an ongoing discussion over the years about how we would like to have our remains handled after we die. We are on opposite ends of the spectrum on this and oddly on ends opposite of where most would think we would be.

As many of you know, I tend to be a bit of a penny pincher. Some would call it being cheap; I prefer to call it being frugal. The possibility of only spending $586.25 for my funeral certainly has its advantages, but it flies in the face of what I have always wanted to do. I would have to say that I am a traditionalist when it comes to funerals and burials. It’s not that I feel like God will be upset with me if I am cremated, I just feel more comfortable with being put in the ground in one piece.

Julia, on the other hand, wants to be cremated. She would then like to have her ashes scattered in the Caribbean as she loves the beauty of the region. The best way to do this would be while on a cruise off the back of the ship in numerous places. For some reason, she isn’t too crazy about it when I ask if she minds if I take a date on this cruise. Geez, sometimes she is just no fun.

This trip to the hockey game came shortly after I went to the funeral of one of my co-workers. Jeff Richards had been suffering from Leukemia that led to complications including pneumonia and ultimately his death. Jeff was as nice of a man that you would ever meet. I don’t think that he ever had a bad word to say about anyone. My boss said it best when he referred to Jeff as a gentleman.

At the funeral, a friend of Jeff’s from his church gave an amazing eulogy that laid out Jeff’s life and all that he had accomplished. It really got me to thinking about what my eulogy would include. I’ve always felt that I have had a good life, but I’m not sure how much material I have created for a gut wrenching, boy what an amazing guy John was, kind of eulogy.

It made me wonder if I should have spent more time in my life creating a better eulogy resume’. In the end, it isn’t about how many toys we have at the end of life, but just what we have done to make the world and the people around us just a little bit better. I think we all hope that we have changed the world for the better. I think I have, but I’ll have to leave that up to the guy that reads my eulogy. I guess I still have some time left on this aging body and as long as I am still breathing I have an opportunity to improve that five minutes of remembrance. Maybe all of us should give a thought as we live our lives, just how we will be remembered on that day.

February 4, 2013 -- Be careful what you wish for

When you either make the decision to become a parent or you find out that the decision has been made for you, your life begins to change. It may be subtle at first, but it tends to gather momentum and in the end, your entire life has changed. It is no longer just about you and your significant other, your top priority becomes that little bundle of trouble.

You don’t realize in the beginning, but the sleepless nights that you have with a newborn are just the start. You think that when they actually start to sleep through the night, you are home free. You do look a little bit less frazzled, but deep down inside you are still engaged 24 hours a day with a sleepless night just around the corner. It goes from having to get up to a screaming child who needs a bottle to one that wakes up from a nightmare or an earache.

You get through all of that and then they get their driver’s license. They start off slow at first, but eventually they are left alone in the car as they run to the grocery store for you. Then they are going over to a friend’s and eventually they are going out on a date and it starts to get later and later that they are out. Eventually, it starts to eat into your sleeping. It doesn’t matter if they are 16 or 22, until you hear that door open and close at 2 AM its tough to sleep with both eyes closed.

The purpose of this whole journey is to create and mold a human being into someone in whom you can be proud. You want your child to be able to stand on their own feet and be successful without your help. You want them to eventually be independent. But then the time comes and you are not so sure that is what you really want.

Several weeks ago Julia and I made the trip to South Dakota to take Jason to school. This is no longer waiving to him as he gets on the bus for the first time as a kindergartener, this is giving him a hug, saying goodbye and leaving him alone 1,000 miles away from home. All of a sudden, you are not sure this is what you signed up for.

For the last 20 years, Julia and I have been caring for Jason in one way or another, either through prenatal care, changing a diaper at three in the morning or talking to him about the girl friend problems every teenager runs into. We loved, cuddled, spanked (yes, I was one of those Neanderthals that actually spanked his kids), read to, played with, instructed and even yelled at (Jason’s room is historically a mess as we often didn’t even know the color of the carpet). Jason and Justin had become a huge part of who we were and now we were shipping one of them off.

The weekend in South Dakota was filled with shopping to get all of the things we couldn’t stuff into a couple suitcases. I think Julia has watched too much HGTV as Jason is now equipped with enough cabinets, hooks, hangers and shelves to last him a lifetime. There is a place for everything and everything was in its place when we left. The question is how long will that be the case? Remember, this is the kid that left the house with who knows what stuffed under his bed to make his bedroom look cleaner.

We spent most of that Sunday sanitizing and arranging his room including creating a bed that is within three feet of the ceiling and has his desk and half of his clothes positioned neatly underneath. It took me three days to get over the aches and pains of that ordeal.

He stayed with us that night in the hotel because the dorm was still pretty empty as classes would not start until Thursday. We cleaned out the hotel the next morning and made our way to the local IHOP. For the most part, we were quiet at breakfast and ate about half of our meals. Eventually we had to get moving because if we missed our plane we might have to take out a third mortgage on the house to afford new tickets because Allegiant only makes two trips a week.

When we got to the dorm, we moved the last things in and said our goodbyes. I kept mine short because I knew the more I talked the more likely I would begin to cry like a 2 year old girl that just had her favorite doll taken away from her. Julia and I made our way to the airport and tried to convince ourselves that everything would be OK and this would be good for him.

Over the next few weeks we did our best to wean ourselves from Jason. After spending almost every day with him for 19+ years, it wasn’t easy. He finally told us he needed some space and we decided to give him that. Then three weeks into the journey he calls and says he has been throwing up and had diarrhea. With all of the publicity about the flu and the fact that it is killing off normal healthy teenagers in days, we felt helpless. For the first time we weren’t able to be parents and feel his forehead and give him chicken soup.

Once again the sleep interrupted nights had returned. Luckily after four days, he was feeling better and we could breathe easy. It seems that it doesn’t matter how old they are or how far away they are, you just can’t turn off that parenting thing. Maybe one day, I will write a book on parenting. The only problem is that it may have 24 blank chapters, because I’m not sure I have yet to figure any of it out.