March 31, 2012 Play Ball!

As we approach the beginning of April, I have to admit that my heart starts beating just a little stronger. I have never hid my love for the game of baseball and another season is just around the corner. It was just a little over 50 years ago that I remember my dad talking about the Reds on their way to the 1961 National League pennant. I didn’t really understand much about the game at the time because very few games were on TV and we just didn’t have the money to go to Cincinnati and take in games.

I quickly became a fan as baseball was America’s pastime in the early 60’s. Football had yet to see the explosion after the start of the Super Bowl, the NBA was of little interest to anyone outside the cities that they played and hockey was played in eight cities that were mostly in Canada or the extreme northern part of the US. By the time I started playing baseball myself at the age of eleven, I was addicted. Everything about the game intrigued me. The smell of a new glove or a well used baseball. The sound of the ball as it meets the bat. The sight of the ball throwing up chalk as it hits the foul line. The mental process of deciding who should hit against who. It was the perfect game.

I did everything I could to learn about baseball, waiting patiently for the mailman to show up on Thursdays with my Sporting News. I had every baseball card each year and I would spend hours memorizing the backs of those cards. I would throw a super ball against the brick wall next to our garage so that I could work on my fielding. I would fungo hit 200 baseballs a day because there was no one to pitch to me.

All of that work in the back yard didn’t get me very far as I peaked at the age of 12 and rode a speeding runaway car to the end of my career three years later. That didn’t keep me from my love affair with the sport, however. I watched whenever I could and fell asleep to many ballgames on my transistor radio smuggled into my room hidden under my pillow.

My Reds were not very good at that time, but I still kept a vigil hoping for another miracle like what happened in 1961. Every year it was the same old thing. I would hope for the best in the spring but watch some other team in the World Series. But in the spring it was magical, I could always convince myself at the beginning of the season that there was new life, there was always a chance. It was a new life, a chance to start over with unbridled hope.

If you think about it, there are only a few times in our lives that we get to start all over. I still remember the last quarter when I was attending UC. One of my engineering buddies and I were walking down the hallway after our last finals and he just threw his books and slide rule down the hall in a fit of pleasure that it was all over. When we move from one job to the next, we receive an opportunity to start all over with a clean slate.

The thing about baseball and the new season is that it wipes out what has happened in the past and every team starts out at the same spot with zero wins and zero losses. Any failures that have happened in the past can be forgotten and we can just move on. We, as humans, every once in a while need a clean slate, an opportunity to start all over. It seems that our failures seem to follow us more than our successes. The old saying at work is that 100 “atta boys” gets forgotten with one “Oh crap!”

I guess that I am at one of those crossroads and I am getting a clean slate. I just received my latest results from my blood work and I have zero losses. For the first time since I found out that I have Multiple Myeloma, the level of cancer in my blood stream is virtually non-detectable. My Lambda Free Light Chains are at 1.81 with a “normal” range of 0.57 to 2.63. If somebody just picked up blood work and looked at it, they would likely not suspect that I have a blood disorder.

This is certainly exciting news for me. It doesn’t mean that I am cured. It doesn’t mean that the cancer has gone away. It doesn’t even mean that I can stop taking chemo. What it does mean is that this little combo of chemotherapies and steroids that I am taking is doing the job, better than anything that I have taken in the past. I will see Dr. Mikhael next week and my hope is that he will consider letting me back off the chemo a bit so that I only take it every other week instead of every week. Normally they like to wait four months before such a move, but I hope to use the medical knowledge that I have picked up watching “House” for the last eight years to change his mind. The belief is that the less I use of it now the longer that it will last. Keep your fingers crossed.

March 12, 2012 - The Waste of a Life

I haven’t written in a while and I apologize for that, but to be honest, I have struggled with the topic that I’m going to discuss and that is Whitney Houston’s death. I could not make up my mind if I wanted to pursue it, but as we have gotten further from her death, I feel that it will be easier to discuss.

Whitney Houston, like many entertainers, was given a remarkable talent. Beautiful, vibrant and with the voice of an angel, she burst on the music scene like an atomic bomb. She was everywhere. She sold millions of albums, appeared in movies and ended up on the cover of every beauty and entertainment magazine. Yet, twenty years later, she died alone in a hotel still fighting demons that had taken over her life.

How many times have we seen this happen? In my lifetime alone, drugs and alcohol have taken the lives of so many entertainers and musicians that they are almost too numerous to list. Just to name a few: Janis Joplin, Jimi Hendrix, Jim Morrison, John Belushi, Chris Farley, Amy Winehouse, Judy Garland, Michael Jackson and Heath Ledger. This doesn’t even include the names of people that didn’t die directly as a result of drugs but where substance abuse indirectly led to their death such as Elvis Presley. The list goes on and on. I could fill up the page with names.

The reason that I am even discussing this is that I find it so tragic. These people were all given an amazing talent. We all have our talents, but those that choose entertainment can reach such highs and lows that their rather unique psyches often struggle with both the good times and the downtimes which they will inevitably find. As a result, they look for crutches or a new high that their normal life cannot give them.

In the end, they throw away everything. Even before their deaths, their lives are miserable. They fail to understand that their life, as it is, has value. Unless they can return to the unbelievable heights that they had reached, they become dependent on other means to simulate their previous highs. Obviously, this isn’t restricted to entertainers, but because their lives become headlines, we know them so much more easily.

What is truly sad is that there are so many of us that just have normal lives that are willing to go through so much to just keep living. I’m not just talking about those of us that are currently fighting illness, but those that work hard every day just to keep their family in food and clothing. Life is a struggle. It doesn’t matter how much money you make or how famous you are. This is not easy. Yet, somehow, we all pull up out bootstraps every day and work through it without having to “escape” through drugs or alcohol.

Certainly addiction is a powerful and awful thing. I understand that. Today we have become so politically correct that we even label it as a disease. I’ve never been fond of that dumbing up of the situation. There are those that have a greater propensity to addiction, I’ll give you that, but at the same time they weren’t born addicted. They did not feel fine, have a physical and find out that they were gravely ill. They made a choice, most of us that are fighting for our lives, didn’t.

I don’t feel sorry for Whitney Houston. I feel sorry for those she left behind. She should have thought about them before she thought about herself.


Another person I don’t feel sorry for is myself. I have been given a hand to deal with and I’m doing the best I can to squeeze every little bit out of life that I can. To that end, I changed my chemotherapy six weeks ago. Before that, my cancer numbers were getting worse and worse. I was actually starting to get a little nervous. There are only so many drugs out there for me and one of the most popular had failed. I wasn’t going to give up, but the cancer had gotten my attention.

When I received the email with my blood results a couple of weeks ago I was anxious to open it up and check that magic number next to the “lambda light chains.” This is the absolute number that let’s me know what the cancer is doing. A person without Multiple Myeloma would likely be under 2.0. Last month, my number jumped from 20 to 46.

I always hope for the best, but this time the number that I saw just didn’t look right. It just couldn’t be what I saw. I looked and then looked again. I sent an email to the person (Megan, my former Stem Cell Coordinator) that sent me the information and I asked her to confirm what I saw. It was 3.19!!!! Not 31.9 or 319, it was 3.19, almost normal. Now understand, this doesn’t mean that I am close to being cured or even getting off of chemo. What it does mean is the new combination is kicking some serious tail, better than anything that I have done before!

We will continue with the every week injections and pills for the time being. Over the next few months we will monitor my level to see if the chemo cocktail stays effective. If it does, hopefully, I will be able to reduce the frequency of the injections. Let’s all keep our fingers crossed.

If you can’t tell, I have a big smile on my face!

January 31, 2012 -- Be Gone January, Be Gone

When I was young, it was easy to pick out my favorite month of the year. Certainly December was extremely important to me highlighted by Christmas and the ensuing presents and 10 days away from school. The three months of summer were also very high on my list with major league baseball in full swing and, again, the ability to not worry about school. October was great because of all of the candy that I would be able to collect at Halloween (and I’m talking full size bars.) But all of those fell by the wayside because January was easily number one on my list.

For most, January was one of the more drab months of the year. Other than New Year’s Day, there were no days off from school or work. The weather in a good part of the country certainly leaves a little to be desired, especially in Ohio where I’m not sure anyone has even seen the sun during that month. There was college football on January 1, but that was the end of it until the fall. All that has now changed, but back then January 1st was the climax. Even pro football was done until they started the Super Bowl and as a Cleveland Browns fan, it still doesn’t matter what month they play that thing.

Despite all of these negatives the fact that my birthday was right in the middle of the month easily put this month ahead of all the rest. I would begin counting down the days on December 26th. January 16th was my day and no one else’s. There was just something special about that day for me. January 16th is so unspecial to the rest of the world that it was proclaimed “National Nothing Day” back in 1973. From the Hallmark site,” This un-event, first observed in 1973, was created by newspaperman Harold Pullman Coffin ‘to provide Americans with one national day when they can just sit without celebrating, observing, or honoring anything.’”

Obviously most think their day is special, but to me it was everything. It wasn’t like my parents ever did anything special. I would never have a party with kids from my school but it didn’t matter, it wasn’t important. We didn’t have to go out to eat or see a movie or anything. It was still my day.

I didn’t even care that much about presents. I would get some from my parents and relatives would send me five dollar bills that I would save up to buy something cool from Jandy’s Toy Store on Main Street, but even that wasn’t all that big of a deal. I would get my favorite cake and get to blow out the candles, which was fun, but it was just a signal that it was my day.

I still feel more important on January 16th but after surviving 59 of those anniversaries of my birth, I now don’t get quite as excited and I even hide the fact at work so they don’t decorate my office with who knows what. I’m still pulling Silly String and confetti from my drawers from two years ago. Yet despite my reluctance to share my day with others, it still means a lot to me. It still is my day. I still feel special that day, even if I don’t broadcast it like I did 50 years earlier.

It does seem that I am starting to feel differently about January as a whole though. It was three years ago that I found out that I had Multiple Myeloma. It was last year that it became apparent that the stem cell transplant had run its course and I would have to restart chemo sometime soon. Then last week, I had a fainting spell at work that brought six EMS guys to the office and a trip to the Emergency Room. After a barrage of test showed nothing including the CAT scan of my brain, they let me go home. No real cause and no concern from that, but it did make me feel helpless for a bit.

Then last week, I got the results of my last blood test. As you know, the Revlimd has been rather inconsistent in its effectiveness and there was a good chance that January would be my last month of usage if it didn’t show some resiliency. In my own mind I was prepared for news that would lead me to the next suite of chemotherapy. What I wasn’t prepared for was the level of the cancer growth. My fear with continuing the Revlimid was that when it did go south, the MM would have a hey day. Well, it seems that the Revlimid not only took a vacation, it threw a little gasoline on the fire.

The biggest increase that I have ever had from one moth to the next was a jump of about 5 which has happened a couple times recently. This time it jumped from 20 to 46 with the 46 being the second highest I have ever had only falling behind the mid 60’s that I had when it was initially discovered. I was a little stunned and disappointed but certainly not ready to throw up any white flags. Poor Justin decided to make this his first visit to see my doctor with Julia and me and he had to hear this.

Although on the surface, this sounds rather ominous, it really isn’t much different than what happened during the six weeks that I was off chemo before the transplant when it jumped from 13 to 41. The fact that I have a good deal of confidence in the next chemo cocktail has kept me from jumping off any nearby bridges.

My next little adventure will include three drugs, Cytoxan, Velcade and dexamethasone. The last two are familiar as I have used them both but the Cytoxan is a new animal to me. It has some interesting potential side effects that may or may not come into play: low blood counts, hair loss (I’ve been working on that for a couple decades so no big deal), nausea and vomiting (usually with larger doses), poor appetite (Guess I can back off my diet), loss of fertility (I won’t even go there) and discoloration of the skin or nails. Pretty typical stuff, not all of which is guaranteed.

The Velcade will be taken subcutaneously (just under the skin in the stomach) while the other two will be in pill form. They will all be done once per week on the same day at different times of the day. This will be ongoing with no breaks although we might be able to back off on the Velcade if good we get good results. In some studies, 90% of those taking this cocktail have seen positive results.

Just another bump in the road as we go through this process. Disappointing, but I still feel good and plan to attack this like I have from day one. Keep the prayers and thoughts coming, they are certainly appreciated.

January 1, 2012 - Let's Start All Over Again

It seems that the magical date of January 1 has made its way into our lives again. It is the perfect date to start all over and the vast majority of us use it to do that to some extent. How many times have we all selected January 1 as the day to begin the remaking of ourselves into something better, something more acceptable to our life's goals? Once again, I will use January 1 as the starting point of a new diet. My guess is that many reading this are shaking their heads and saying the same thing.

In addition to the more than likely failed effort of losing weight, I have decided to add an even more important resolution to my new year. This is one that I will do my best not to let slip through my fingers and be forgotten by February 1 which is generally the lifetime of most New Year's resolutions. As much as I would like to look in the mirror and see an Adonis staring back at me, this one is actually more important.

In less than a month, I will have made it through three years of my battle with cancer. It hasn't always been pleasant, but I'm proud to say that I have made it this far when I had serious doubts in the beginning that I would still be upright in 2012. Yet, I'm not sure that I have utilized my three years as well as I should.

I'm afraid that I have felt maybe too good during this stretch. Yes, I have had some difficult times, but for the most part, I have felt unaffected by the disease. It has given me a somewhat false sense of security, a security that most of us take for granted every day of our lives. That security is the belief that I will have tomorrow to get the most out of life, a life that should be enjoyed to its fullest extent every day, something I know I haven't done even with this cloud hanging over my head.

We spend our entire life wishing away the days always looking for tomorrow, looking for something better. It starts out very early when we wish to be older so that we can stay up later and not have to take a nap during the afternoon. (Now, I'd love to be able to take a nap every afternoon.) Then before long we are wishing away the days until we turn 16 so we can drive a car or 21 so that we can have a drink with our friends.

Everyone of us is guilty of wishing away at least four days of every week. How many times have you wished on Monday morning that it was Friday afternoon? We are only given a precious few days on this earth and we probably wish away half of them. Too many of us look at a normal day as a penalty that we have to pay to get to the good ones. The only exceptions to wishing away days are days that include trips to the dentist and getting a colonoscopy. I'm sure there are a few others, but those really stand out.

Give some thought when you are putting together your improvements in the next year and think about how you can take better advantage of those not so thrilling “normal” days. Not every day can be Top 10 day, but it is what we do with the rest that really make up our lives. Do your best to enjoy them because you just never know when you might not have as many left as you would like.

One thing that I have tried to do since I started this blog was to give you all an idea of what I was going through and what it was like to fight the biggest battle of your life. I have always tried to be honest because it doesn't do any of us any good to just say the things that people want to hear. With that in mind I'm going to level with you all, this year has not been the easiest on my mental approach in the fight.

As you know, I get my blood tested every month. This is both a blessing and a curse. Every month I know pretty much how things are going. Aside from being told for the first time you have cancer, the scariest thing that you have to do is hear the results of the next test. For some, that is in six months or five years or some other timeline. It really doesn't matter how long the interval, the fear never subsides, until the doctor tells you that all is clear or things are improving.

Of the twelve blood tests that I had this year, only three saw improvement, the rest showed some advancement of the disease. I cannot tell you how frustrating that has become. The reason that I bring this up is that my last blood test once again showed that the Revlimid is not doing the job. After the dosage was increased to 15 mg there was a nice improvement but this last month showed that everything that was gained was lost. So, I have been on Revlimid five months and the light chains have basically jumped up and down and are back where I started in August.

I guess that I should be happy that I have gotten five more months of relatively good health without it getting worse, but it just gets frustrating always being on the edge of having to do something else. I can live with the prospect of being on chemotherapy for the rest of my life, but it would be nice to see some consistent progress. As I have stated before, it is the mental aspect of the disease that can be so taxing. I'm extremely lucky that I only have to battle that part so far. I will be taking the Revlimid for another cycle to see if there is some hope to salvage the use of the drug. If not, it will be on to a different chemo drug.

Don't get me wrong, I still feel great. In addition, I'm going to take my own advise and try to enjoy every day just a little more that I would have in the past. I'm still pretty confident that the Mayans are wrong and we will all get to enjoy 2013, but you just never know......

December 5, 2011 -- Learning from the Young

The hour trip home seemed like five. The Hamilton Huskies, in search of their 54th consecutive victory and fourth straight AZ State Championship had just had their heads handed to them. After beating Desert Vista 35-10 earlier in the season, they had just lost 45-19. As we sat in the stands, we could not believe what was happening. The top rated defense in the country (per USA Today) had not forced Desert Vista to punt the ball even once. This had to be a nightmare. When was I going to wake up?

From the very beginning of the season, the class of 2012 at Hamilton had been viewed with a jaundiced eye. There were no real superstars although there will be a few headed to BCS conferences. The entire team had been described as “not one of Hamilton’s best.” Translated, that meant that they might be good, but they might be beatable which for Hamilton is a lot to say.

Then they started winning games. The first game was ugly, but it became number 41 in a row. As parents, we would talk before and after games about “the streak.” We did not want our boys to be the ones to stop it. It became more important than anything. We worried more about the streak than the state championship. They just had to keep it going so they wouldn’t be labeled as the team that ended the streak.

The wins kept coming and the team escaped a bullet when Chandler fumbled four times in the fourth quarter and win number 46 was assured with a 28-21 come from behind victory. They breezed through the rest of the regular season and the first three rounds of the playoffs and stood just one win away from being able to take a breath and not worry about the streak.

As a parent, I found myself not enjoying the season because of the expectations. At Hamilton, you are supposed to win and win big. If we just win by three touchdowns, we would talk after that game that they did not play very well. It was easy to get caught up in that expectation.

Understand that this is not something brought on by the coaches or the administration. They want to win, but they always treated the boys the right way. Did they yell and scream? Sure, but certainly no more than a parent would when their child did something inappropriate. They are good coaches and treat the boys well. No, this comes from the stands and the one million articles in the paper that talk about the “longest streak in the nation.”

When a student goes to Hamilton (there is open enrollment in Chandler, so there is choice involved) and they want to play football, he has to understand that he might never see the field. The likelihood is that if he ever starts it will be as a senior. The senior year is everything. If you succeed or fail your senior year is all that really matters. Jason has a state championship ring from last year, but getting one as a senior is what really mattered. As a senior, you feel real ownership. It is your championship. The fact that the class of 2012 did not accomplish that goal is what was eating at me on that long drive home. How would Jason handle the loss?

Julia and I talked about it most of the way home that day. How would we talk to Jason? What would we say? How could we console him after the loss? We came up with an approach and waited for him to get home. We knew he would be suffering.

Fifteen minutes after we got home, we received our first communication from Jason on the bus after the drubbing in the form of a text. It simple stated, “I’m starving.” About 30 minutes after we ate the doorbell rang and there was one of his teammates coming to "hang." Soon another ring and a couple more. Before we knew it, the guys were running up the stairs and off to another teammates house to meet more guys.

At that point, we knew he would be OK. It might be hard, but the fact that he had already moved on to food and friends was a good thing. Maybe, just maybe, the loss was going to be harder on the parents (or more specifically, me) than it would on Jason. Maybe he was the mature one here.

In the days that followed, we talk about the loss with Jason. He was disappointed, but it was not the end of the world for him. He had a surgery to get through and the rest of his senior year. Football was not his life, just a piece of it. He finished his varsity career 33-1. It would not be easy to forget the “and 1” but it would not define him. It seems I have a lot to learn.


It is always more fun talking about football that my cancer, but I did get some good news from Dr. Mikhael last week. It seems that the increase in the dosage of Revlimid is working. As a result, the damage done the previous month had been reversed and I’m back down to where I was after the second month at 16.9. We will continue with the 15 mg. daily for the next month and see what happens. Hopefully, we will see a different trend than we did with the 10 mg. dosage and the improvement will continue. I have been feeling great the last two weeks without the down days that I had been seeing. I will know more just before Christmas. We’ll see if Santa is good to me or not!

November 2, 2011 -- Who Says You Can’t Go Back?

As we go through our lives we have the opportunity to make each stage the best time. Ultimately, we fail in doing so for whatever reason, good or bad. It is often the case that we don’t even realize that what we are experiencing ends up being the best that we will ever experience. The hope is that it always gets better, but there are never any guarantees.

For many, the time that they spend in high school is as good as it gets. It may be the Prom Queen or the star quarterback, but what they experience during those four years never gets any better. High school for me was a good time, but hardly the ultimate. I enjoyed it, found it challenging and had some experiences that I will never forget. But it was never going to be the end all for me and luckily it hasn’t been.

The reason that I have broached this topic is that I attended my 40th high school reunion last month and with it brought back many wonderful memories. When I signed up, I was hoping that I would get to spend some time with the people that I was closest to during my stay at Chaminade. For the most part, those were the people that I had gone to elementary school with. However, as the date was getting closer, I became more and more disappointed with the fact that none had signed up to attend the dinner on Saturday night.

I was resigned to the fact that I would spend about an hour and a half at the dinner, eat my rubber chicken and then take off. You have to understand that I am not the social butterfly that Julia is. She can walk into a room of 50 people that she has never met and walk away Facebook friends with half of them. I am okay in my select crowd, but get me in a group that I am unfamiliar and I immediately become a wall flower.

Understand that I knew most of these guys 40 years ago, but I really didn’t spend much time with them outside of class. The evening started slowly as I was just being casually involved in a few three- and four-way conversations, but then I started to gather some speed and actually engaged in some one-on-one’s. Before long it was dinner and I was ready to make an evening of it. Amazingly the food was good and the conversation better.

I ended up talking with Dave Trainor quite a bit. Dave and I spent a good deal of time in classes together but probably spent even more time playing euchre before school and during lunch. I had contacted Dave before the reunion by email and talked him into coming. He felt that if I could make it from Phoenix, he could make it from Wisconsin.

Gary Geisel and I took virtually every class together as freshmen but rarely spoke. At the reunion, we probably talked for 20 minutes about his love of chasing his ancestry which was probably 15 more minutes than we had talked in high school.

Fred Limbert and I had a long conversation during the evening where we shared our views on everything from his gayness to our mutual love of children. Fred was an interesting character in high school who many of us felt might be gay, but it wasn’t the thing to do or even talk about at an all-boys high school in the late sixties and early seventies.

By his own admission, Fred was probably the last to know that he was gay. Like many, he struggled with it before he realized that it was who he was and has made a wonderful life with his partner of 25 years as they have raised three wonderful children Again, I spent more time talking to Fred than the four years that we spent together as teenagers.

Amazingly, I was becoming the social butterfly that I never was in high school. I was never a leader, just a follower and content to hang with the guys I was most familiar with. It was great to spend time with people that I knew only briefly, it seems, to find that they had become interesting, diverse people.

Herb Schwendeman and I had passed a few emails back and forth before the reunion as he and his wife Betty were part of the committee that threw this all together. It seems that I wasn’t the only one with a bit of a cancer scare as Herb went through the same thing earlier in the year and is doing well. As we shared insights and strategies in our emails, I looked forward to reconnecting at the reunion as again; Herb and I were not particularly close while at Chaminade.

If you remember, I used some of Herb’s thoughts in my last blog about faith and hope. We spent a good deal of time in conversation that night as I was the last to leave. Sometimes it just takes a while to understand who your friends are and I think that Herb and I will remain close for the rest of our time on this earth. Herb has a wonderful insight that is far deeper than I ever tread and it is one that has given me some new thoughts on who I am and how I can fight this disease in ways other than food and medicine.

In the end, I had a great time and I’m already looking forward to the next time we can get together when we all turn 60. Lord, that is a humbling thought. I remember when I thought that 40 was old.

What really struck me during the reunion is how superficial we can be at that age. Hanging around with Gary or Fred or even Herb was not something that I would have done in high school. I have always been a believer that people don’t change much in their lives, but maybe I need to rethink that a bit. Maybe we become more alike as we mature and the superficial differences in high school become just that, superficial. Or maybe I changed a bit.

October 18, 2011 -- Do as I Say, Not as I Do.

I have never had a problem giving out advice and it never seems to matter if it has been requested or not. On the flip side, I am one of the worst people when it comes to taking advice from others. This last Friday might be the turning point in what I do about advice. I’ll probably still be free with advice, but maybe it be a little more open to advice I receive.

This last Friday was Senior Night for Jason’s football team. In my mind it should have been called “Parents’ Night” since we were called out on to the field and got to escort our respective senior out on the field. Even with as much promoting as I could do, it never seemed to catch any traction so they kept it at “Senior Night.”

You have to understand my insistence on Parents’ Night, however. While I was in high school, the closest I ever got to a varsity field was when I bought a ticket and showed up in the stands. I was wonderfully mediocre at just about every sport I tried, so getting on to the field was a nice experience for me.

Jason’s senior season has not gone according to plan as he started the first game of the season but has seen his playing time go down as the season progressed. Over the last two years, 33 scholarships of varying levels have been given to seniors graduating from Hamilton, so we all had our hearts set on Jason getting some looks from somebody, somewhere. We weren’t delusional about BCS or even Division I, we were just hoping that he would get some money and have an opportunity to continue to play.

I must say, however, that he has taken it well, far better than me. He has remained enthusiastic even when he was only playing on special teams, congratulating teammates after good plays and having a good time, even when he felt he wasn’t able to contribute as much as he would like, he kept his head up and kept giving it 100%. His perseverance has paid off and he's back in the starting lineup this week against Basha.

During these two months I’ve been talking to him quite frequently trying my best to keep him in the game, so to speak, because in football you never know when your number might be called. I don’t know if he has been listening but I can tell that he hasn’t given up hope.

All this brings me to my situation and my own inability to listen to my own advice. Odd, it was during the game that I got my latest results on my blood work. If you remember, I was showing some gradual improvement on the level of cancer in my blood stream during the first two months on Revlimid. I was concerned that it might be losing steam but the worst I expected was no improvement. To my huge disappointment, the results were even worse; the cancer had gone up to basically where it was at the beginning of the three months. Since this is a G-rated blog, I will not repeat the words that I uttered when I read the email.

I have really done my best to stay positive no matter what the results have been over the last 33 months, but for some reason this hit me harder than anything since I found out that I was sick. I was hoping to get three years out of this drug and it looked like I was going to get three months. When you are doing everything you can to stretch out your life, 33 months is an eternity. There are other drugs I can take, but losing probably the best one so quickly was not easy to swallow.

I tried to not let it affect me too much, but it really came to a boil when I went into a 30 second road rage on Sunday when a woman forgot how to drive in a parking lot. I realized at that time that it was time to reel it in. It seems that I could advise my son to stay at an even keel and stay positive, but I couldn’t do it myself.

I shared my latest findings on Monday with a friend from high school that I reconnected with at my 40th reunion a couple weeks ago, Herb Schwendeman (more on the reunion in my next blog.) Herb had some kind and thought provoking words that helped push me even further down the road to a more sensible approach.

“The Rosary starts with three prayers for an increase in faith, hope and charity.  I have found myself trying to appreciate the difference between faith and hope.  An intellectual question perhaps, but certainly faith is the base that allows strong belief with little understanding.  There are those who would say that faith is irrational.  But then what is hope, John?  Do we all have hope on some level?  Hope must surely rest on a strong faith.  Is hope the expression of desperation? To believe in the face of seemingly insurmountable odds that God will grant us what we seek; is this hope? Is hope faith that things will be better?   I often visualize hope as holding on to God's sleeve, in silent hope that He will in His mercy grant me peace.”

I have felt all along that the only way to beat this disease is to have faith in myself, my doctors and God. I think it is only through that combination that I will be able to do what I have envisioned with the rest of my life.

Julia and I met with Dr. Mikhael on Monday afternoon and he suggested an approach that I had given some thought but quickly brushed away. Because of my damaged kidneys, I was only taking 10 milligrams of the Revlimid in comparison to dosages as high at 20 mg. for people with healthy kidneys. After meeting with several other doctors at the Mayo, Dr. Mikhael suggest that we take the dosage to 15 mgs. due to the fact that my kidneys were holding up well with the 10 mgs. So for the next 6 weeks we will try that approach and see what happens.

I suppose I just needed a slap in the face or two to get back to having faith that between God, Dr. Mikhael and myself that we could come up with a solution that might work. I guess we will know in 6 weeks.

October 12, 2011 -- Light the Night III

Since I began this fight with Multiple Myeloma the “Light the Night Walk” has become an important milestone for me every year. It allows me to put an additional notch on the wall that I have beaten cancer for another year. The fact that the first year was such a struggle for me and each year has gotten easier helps give me another reminder of how good I actually have it. Please take a couple of minutes to read the note that I have sent out to a few folks that don’t read this regularly. If you can join us or help in the cause, it would be greatly appreciated.


It is once again time for the Leukemia and Lymphoma Society's “Light the Night Walk.” This will be my third year to participate which, in a way, is a bit of a minor miracle. When diagnosed with Multiple Myeloma 32 months ago, I had no real reason to believe that I would still be here today. Those of us that find the disease in Stage III (there is no Stage IV) typically live 29 months. I’m one of the luckier ones that has outlived the median mortality rate and continue to feel good about my future.

This last year has had its ups and downs as one of my best friends also found out that he has Multiple Myeloma. In addition, one of the people that reached out to me shortly after I was diagnosed passed away after just over two yours of fighting the disease. Julia’s grandfather passed away this spring from Leukemia after a long fight with prostate cancer. He was 96, but as vital as the day was long. He was not ready to die. To top off the year, my stem cell transplant ran out of gas and I began a regimen of chemotherapy three months ago that will continue for the rest of my life.

Despite that, I remain positive because I know that I have much to live for and there are great advances in research coming. Another good friend that is in his mid-twenties and fighting MM was recently married and is enjoying a honeymoon in Italy. One cannot stop living because they are fighting a terminal disease. You have to live life to the fullest and enjoy every day as if it were the last.

The walk this year will be held at the Tempe Arts Park on the evening of November 12, 2011 as it has for the last two years and we can only hope for greater success. If you can, please come and support the fight against all blood cancers through donations and finding others to join in the walk as we seek more answers that will eventually find cures. If you cannot come, please donate knowing that every little bit that comes in goes to help sufferers of these dreaded diseases. It may be something as simple as helping with co-pays or education around clinicals that are happening or counseling both the patient and their family. In the end, a good deal of your donation will help in the fight for cures.

The fight for a cure is so important because when you have an incurable disease, you cannot help but wonder every day, “how much longer can I last?” You know that the disease is still in you and doing its best to end your life. It is something that you learn to accept, but it is still there. I look forward to the day that I can start thinking about holding a grandchild and not just wonder if I will be here in a in a year. We all need your help.

Remember that this is a night to remember those we have lost not only to blood cancers but cancers of all kinds. It is a celebration of their lives despite being taken too soon. We all have loved ones that have died or are fighting cancer. Please help put a stop to it once and for all.

You were all so generous last year that I can only hope that we can reach and beat a more aggressive goal. Please join Julia, Justin, Jason and me in fighting these diseases. Click on the site below to join in the cause.

http://pages.lightthenight.org/dm/Phoenix11/TeamOutlaws


Thank you for your continuing help,


John Churan

October 5, 2011 - The Loss of a Genius

Today is the 21st anniversary of my father’s death and I took a bit of time to reflect on that and the interesting life that he led. I have always said that my life was boring but a very good one. My father led a life that although not adventuresome, it was certainly one that gave him a complete lifetime of experiences at a very young age. I have often wondered if I had shorted myself out of those kinds of adventures for the safety net of constant employment.

Just before I was to head home from work, Julia texted me that Steve Jobs, the mastermind behind Apple, had died. This was not completely unexpected as he had been fighting cancer for years, but still one that set me back. Understand that I am not an Applephile. I have owned the same iPod for the last five years and we just purchased an iMac that I still can’t figure out. I have watched Apple from afar but never fell in love.

Steve Jobs is a different matter, however. If there is such a thing as a man crush, I have had that for years. Jobs was an everyday man that went from being abandoned by his parents to one of the richest men in the world. He dropped out of college because he felt guilty that his adoptive high school-educated parents were spending money that they didn’t have to send him to a school that was one of the most expensive in the country.

He felt that he could do more on his own as he chased his dreams. And did he ever chase his dreams. From the garage of his parent’s humble home, he and Steve Wozniak created Apple. He went on to lead Apple to great heights only to be fired. Imagine being fired by the company you created. Yet he bounced back to lead the company to even greater heights, at one point, being the most valuable company in the world.

He was a genius at a time when we scoff at the very term. It seems that it is easier to believe that someone from the past is far greater than someone of the present. It is the reason that Babe Ruth will always be called the greatest baseball player ever no matter who comes after him. We find it hard to crown someone as being exceptional in our own lifetimes no matter what they achieve.

More than anything, I believe that Jobs was special because he didn’t fall in love with the thought that he was special. He was knocked down so many times in his life that he knew the only way to survive and make a difference was to work harder and never give up. When he found that he had cancer in 2004, he became a mere mortal and it drove him even harder. Even though he initially beat cancer, it made him look at life as being even more precious. When he spoke at the Stanford graduation ceremonies in 2005 he spoke from the heart.

“When I was 17, I read a quote that went something like: "If you live each day as if it was your last, someday you'll most certainly be right." It made an impression on me, and since then, for the past 33 years, I have looked in the mirror every morning and asked myself: "If today were the last day of my life, would I want to do what I am about to do today?" And whenever the answer has been "No" for too many days in a row, I know I need to change something.

“Remembering that I'll be dead soon is the most important tool I've ever encountered to help me make the big choices in life. Because almost everything — all external expectations, all pride, all fear of embarrassment or failure - these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart….

“No one wants to die. Even people who want to go to heaven don't want to die to get there. And yet death is the destination we all share. No one has ever escaped it. And that is as it should be, because Death is very likely the single best invention of Life. It is Life's change agent. It clears out the old to make way for the new. Right now the new is you, but someday not too long from now, you will gradually become the old and be cleared away. Sorry to be so dramatic, but it is quite true.

“Your time is limited, so don't waste it living someone else's life. Don't be trapped by dogma — which is living with the results of other people's thinking. Don't let the noise of others' opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.”

Steve Jobs was no saint as some of his early indiscretions would indicate, but the man truly was a genius. He brought about change. In many ways, he changed the world. He didn’t bring world peace or find a cure for cancer but he did make a difference even to the end. Listen to his words, they speak volumes. Don’t ever let failure stop you; don’t ever let potential embarrassment hinder your efforts. Follow your heart and make a difference. Make use of what precious time we have.

September 23, 2011 -- Expectations

I haven’t had a chance to catch the new TV show “The Playboy Club”, but it got me thinking about my first trip to one of the Clubs and how I viewed a similar trip a decade later. All of this relates to how things change in life with regard to expectations as we grow older and learn more about life and the things around us.

Those of you that know me well know that I have never been much of a partier. I have gone to my share, but never made it a big part of my life. During my college years, I’m not sure I ever attended one. That sounds absolutely pitiful as I now actually type the words, but it just wasn’t that important to me. Either that or no one ever invited me.

On the same hand, I wasn’t much of a bar fly either although it was legal back then to drink 3.2 beer (the 1970’s version of Lite beer) when you turned 18. The problem there was that I have never liked the taste of beer. The thought of drinking it to excess was even less of an enticement.

So at this point, it has been established that I was a pretty boring engineering student while in college. However, there was one night that I stepped out of the mold and made my way down to the Cincinnati Playboy Club. It was a Saturday night during my freshman year and several of us were sitting around the dorm with nothing to do. One of the rich kids was bragging that he had a key to the Playboy Club and could get us in. All of a sudden the boring engineering kids had something exciting to do.

The real problem was that none of us were 21 and knew we would have to pull something off to make all of this work. For some reason, and this tells you just how much of a nerd I was, I had two sports jackets in the dorm with me. What I ever thought I was going to do with those I will never know as this was the era of platform shoes, plaid bell bottoms and straggly hair. We scoured the dorm for two more so that we would look older and more sophisticated.

After an hour of searching, we found two more and were off on the geek version of a rumspringa. We piled into my 1968 powder blue four door Ford Falcon and ventured downtown. We got the oldest looking of the guys to act like he was the key holder as we all held our breath that they would let us in. Amazingly, they let us in without even a hint of suspicion that we would out of our league.

We now had to spring into the second part of our scheme and that was to make $43 last for a couple hours. None of us had a credit card and ATMs were science fiction at the time. We decided that each of us could get a drink and then do a shift of two and then the other two would get drinks. This was the only way we could conceivably make it work. Engineering minds at work.

I approached the bar and realized when I got there that I really hadn’t thought this through because I had no idea of what to order. I had left the pack and found myself in no man’s land. I quickly used my rapid engineering mind and remembered that my dad liked something that sounds like a Seven-Eleven. So I proceeded to order that and the bartender looked at me like my hair was on fire and asked me to repeat what I wanted. I again said “Seven-Eleven” and he just shook his head and gave me a drink. I had survived my first Playboy Club interaction and didn’t even realize that I would likely be the butt of jokes between bartenders later that night.

We grabbed a table and sat there ogling the waitresses like we had never seen a beautiful woman before, giggling like 4 year old girls. Despite the fact that we saw attractive girls on campus (never in our classes though as there were no female electrical engineers) these women were different, they were amazing, they were goddesses and we were not even drunk.

Part three of the plan was now put in place as two of the guys ordered a second round and the other two of us sucked on ice. The drinks arrived and we continued to stall as we tried to gather in all of the excitement that faced us that evening. After a couple attempts to get us to order more drinks the waitress finally realized what was going on and busted us. She just smiled, we paid our check and we scurried to another room in the Club.

We were down to about $12 at that point but thought we could stretch this out a little longer. We then had our bubble burst as we noticed that there was a $5 cover charge in that room, obviously because of later entertainment. We quickly left, just happy that no one had completely discovered our sham. It was one of the nights that I will never forget despite falling short of a full evening.

Ten years later, the Playboy Club came to Columbus and I was given a key by my girl friend and we made a trip. My expectations were huge as I fondly remembered my first trip. However, the evening was a huge disappointment as the women were no better that you can now see in a typical Hooters or any one of the other breastaurants as they have now come to be known. Obviously the thrill had been lost and I never went back.

Same Club, same concept, but different reaction. It seems that those ten years had changed my view of the world and my expectations. We all change expectations in life as we experience more and expect more. I always marvel at how much fun a child can have with very little. A two year old can go up and down a slide and laugh as if it were the greatest experience in the world. A five year old can play with the same toy car for hours and do the same thing the next day.

As adults, we expect so much and often have to go to extremes to even crack a smile. It’s too bad that expectations become so big that life isn’t as wonderful as it was when we didn’t know any better. Too bad a Popcicle doesn’t make my day anymore. Keep enjoying the little things, they should always be important in our lives.

September 13, 2011 Failures and Regrets

We live our lives far too often just worrying about the present. We often forget that both the past and future should be part of our decision making process. It can be something as small as the decision to eat dessert to something as complicated as whom we should marry.

It isn’t easy to admit this, but I have probably lived most of my life worrying more about potential regrets than potential rewards. We tend to forget our triumphs and remember the failures that turn into regrets.

I’m sure you all have regrets in life, I know I do. One of the questions that I always ask people when I am interviewing them for a job is, “What is your biggest failure in life.” I really don’t care about what the failure is, but more about how they dealt with that failure. If I get the answer, “I really don’t feel that I have had failures as I have learned from my mistakes,” they immediately get crossed off my list. If you cannot deal with and admit to failure, you are not going to be successful in life.

One of my biggest failures in life was my inability to get through Engineering School. In the end, it was probably one of the best things that ever happened to me as I would have been miserable as an engineer. I think the recovery that I made from that failure is one of the things that makes me who I am. Certainly a failure, but not a regret.

Shortly after that, I stumbled into my second biggest failure and that was my first marriage. I was naïve and probably not as experienced in relationships as I could have been at that stage of my life. Certainly a setback at the age of 24, but again not the end of my world. If you would have asked me at the time would I have regretted the decision to marry, I would have said yes. If you would ask me that question today, I would have a much different response.

After Ann and I divorced, I took my time finding the right woman the second time around. In fact, it took me a full decade to find the love of my life. It wasn’t always easy traversing those years, but in the end it was worth it. Do I have regrets from those years? You bet! Not so much who I dated, but some of the decisions I made along the way and some of the mistakes I made in how I ended relationships.

Was my marriage a failure? That is an easy answer, but I would never regret the experiences that formed me over the next 10 years.

If there is one great regret in my life, it happened when I was still turning into an adult. I was 22, just graduated from college and soon to be married. I was too much about me and not enough about others. You would think at 22 I would be smart enough to understand the world around me, but sadly, I didn’t. It was during that time that my mother was fighting a losing battle with cancer.

It was a very different time when there were not many tools to fight cancer. She had half of one lung removed, but no chemotherapy or radiation. She was withering away to little more than skin and bones, but I was too blind to see what was happening. Soon she would be dead and I was content to stay 90 miles away and live my life like nothing was happening. As a result, I never really got to spend the time with her at the end and tell her the things that I should have. Even saying “I love you” was difficult for me at the time, let alone all of the thanks I should have given her. I miss her to this day. It is difficult to replace the unconditional love of your mother. In her eyes, I was perfect despite all of my flaws.

Knowing my mother, I’m sure it hurt her a great deal, but I’m also sure she forgave me before she died. The thing is, I still haven’t forgiven myself. It is 36 years later and I think about it constantly. It is probably why I have lived much of my life avoiding regrets.

I often have conversations with Justin and Jason about regrets and how terrible they can be. Do not let opportunities slip by in life because they often do not return. I let one slip away that I wish I hadn’t. Don’t make the same mistake.

August 27, 2011 Wonderful

I have touched on this topic in the past, but now is as good of a time as any to dive into it a little bit deeper. Life is filled with ups and downs. What we make of life is how we deal with that inconsistency and how we work to minimize the damage caused by those dips. There hasn’t been a successful person that didn’t have to deal with some type of adversity in life. They are successful because they were able to get past that.

When you are dealing with disease, you are often confronted with those ups and downs on almost a continual basis. It becomes very easy to become myopic and only see the latest information and become fixated on the potential outcome. Even inside of that vortex, there is the likelihood that bad news is greeted with certainty and good news with a significant level of skepticism. You really want the positive to be true, but it is very easy to keep your level of excitement at a minimum because of the potential for an even greater letdown with the next set of tests.

This is where your own beliefs and attitude need to become even more important. It is easy to get depressed when things aren’t going your way and it can be in anything in your life. It can be the new job that just doesn’t seem to be going as well as you had anticipated or the new boy friend that doesn’t seem to be paying as much attention or the fact that the stock market has taken another dip. Don’t even get me started on how the Reds are doing this year. If you let those things get in the way of the positives that are still there, there is the possibility of making things even worse than they really are. It is here where faith in God or your friends or even yourself is so important.

There are days where I just don’t feel quite right and some days just flat out poor. Part of that might be the cancer or the medication or the fact that I’m just plain old. Yet, when someone asks me how I am doing, I almost always tell them that I am doing great or wonderful or some other positive descriptor. I actually do this for a number of reasons but the most important of which is to remind myself that I have to stay positive. More than anything else, I do what I can to battle to downs with a little bit of my own pep talk which is something that I have learned to make part of my everyday life (away from cancer.)

I hate to admit this but in years gone by I have allowed some really idiotic things to make my mood less than positive. Probably the worst of these is my love for the University of Dayton Flyers. Over the years there have been many Saturday nights that I would drive back from Dayton completely disgusted with the outcome of a basketball game. I would then allow it to creep into my Sunday and even my Monday. In retrospect, I had to be nuts. It was a stupid basketball game! As stupid as I was, I’m sure that I wasn’t alone on those evenings and my guess is that there is something in your life that is just as trivial that depresses you far more than it should.

The thing that I have learned over the course of the last two and a half years is that the little things just should not do that to you. Use the little things to perk you up, not drive you in the other direction. Even if it is a bigger thing, one has to learn to move it from your normal thought process, because that depression or worry will never make you better or make you happy. All of this is certainly easier said than done, but unless you work at it, there is no chance for it to happen.

Since the beginning of January, my blood tests have continued to deteriorate month after month. It was easy to read the handwriting on the wall and see that chemo was on the horizon. It was hard dealing with that, at times, but I still did my best to stay “wonderful.” Now the chemo is here and I’m still saying “wonderful.” But now I have a better reason to say that because after my first round of chemo, the level of cancer in my blood dropped from 20.8 to 16.9 with normal being below 2.0.

Dr. Mikhael was very pleased with the result as is shows a nice slow controlled drop which is preferable to a quick drop that often signifies a stronger, faster growing cancer. In addition, the kidneys held their own and there was no significant drop in my red and white blood cells which often happens with Revlimid. So far, so good, with hope for another drop next month. Now when someone asks me how I am doing, saying “wonderful” comes just a little easier.

August 15, 2011 -- Side Effects

Before this goes too far, I have to admit up front that I am a TVaholic. I understand that this is not acceptable to many people, but it is who I am. I enjoy TV and I like to go to movies. Maybe it is just an escape from normal life, but it is what I like to do.

That being said, I have seen more than a few commercials in my life and have really noticed a change in the last 10 years. Ten years ago, there were not too many commercials for prescription drugs. They were what your doctor prescribed and as a patient, you just left it up to them to decide what was best. The world has changed and we are continually bombarded with commercials for all of these new and exciting drugs, everything from drugs to help you in the bedroom to drugs that allow you to eat all the wrong foods and still have good cholesterol.

The other thing that you can’t help but notice is all of the potential side effects. After they read the list of potential side effects, it is a miracle that anyone takes anything. My favorite is the anti-depression drug that may cause you to have thoughts of suicide. Heck, all I have to do is look at my tax bill every year and I have thoughts of suicide.

The problem with these side effects is that they come from clinical trials that want to know everything that happens to you when you are participating in the clinical and they consider anything abnormal as a side effect. Yesterday is a perfect example of what would have been a side effect if I was actually participating in the clinical that had been discussed several months ago.

After running a load of towels through the washer and dryer, I decided to do some of my husband duties and fold the towels. There were a few too many bath towels to put on our towel shelf, so I laid two towels on the tub. All I did was bend my back about 30 degrees and I felt a little pop in my back and instant pain. I managed to mess up my back by laying down two towels that didn’t even weigh a pound. The fact that I have had a history of pack pain and I seem to be falling apart would have nothing to do with the requirements of the clinical. It would have to be reported.

So today, I took a look at the potential side effects of Revlimid and found that there were potentially 242 side effects. Yes, you read that right, 242. There was everything they from heart attacks to hiccups. Just about everything that could go wrong was on there. Right in the middle was a listing for back pain. Obviously, my back pain had been caused by the drug. It seems to me that because of the way the clinicals are run, some of the information becomes worthless and you have to look at everything with a jaundiced eye.

In my particular case, I have run into some side effects that I would prefer to avoid. The first one that hit took about 3 days to rear its ugly head. Before I went to bed that night, I noticed that my scalp had become itchy. I didn’t think much of it until the next day rolled around and it had become worse. Three days after it started, I looked like a dog with flees, scratching at every opportunity. Luckily, it started toning down the next day and eventually went away.

The next side effect was a continual cramping of muscles. This could happen at any time and just about anywhere on my body. This started about two weeks in and seems to have settled down to where I only occasionally get a cramp.

However, the last side effect that I have noticed is the one that is going to drive me crazy if it doesn’t go away. I have a further confession to make. I am not only a TVaholic but also a foodaholic. It’s not that I eat a lot of different things or even things that are good for me, but I do like food, probably to a fault. I am now finding that food is losing its flavor, especially salt and other spices. I eat spicy food and think it is boring, which has never been the case. I have already found that adding a shake or two of the salt shaker is worthless. I can live with this, but what a bummer!

On a related front, water suddenly tastes like bleach. Now, I’m not exactly sure what bleach tastes like, but this has got to be it. Since all of this started, I have gone from drinking a lot of tea and soda (pop for you mid-westerners) to drinking almost exclusively water due to my kidney issues. I will typically drink at least 80+ ounces of water each day. This has now become a chore as we search for fixes.

Don’t get me wrong, I will trade all of these inconveniences for a few more years of life. We tend to become spoiled in life and always want things to be perfect. It is only when other things become more important that we are willing to compromise. I have found my reason to compromise. In the end, I needed to lose a few pounds before my 40th high school reunion, anyway. There is always a silver lining, I guess, you just have to look hard enough.

July 26, 2011 The Miracle of Medicine

Battling cancer can be an interesting journey. You think you have it all figured out and you get thrown into a new phase and you have to figure it out all over again. I guess you can say that I have had three phases so far: 1) first rounds of chemo after cancer detection, 2) transplant and 3) post transplant recovery and aftermath.

Phase one was scary because I didn’t know if I was going to live or die. If you haven’t gone through this before, it is very easy to think the worst because you really don’t know enough. I somehow got through that phase and then it was on to the transplant. Unlike the first stage, I felt very confident that the transplant was going to work.

I knew it wouldn’t be a day at the beach, but I felt pretty good about my survival chances. I wasn’t 100% sure that I would walk out of the hospital so we had family pictures taken so the boys would remember their dear ole dad. Although I thought they were decent photos, they don’t see the light of day in the Churan household because I guess I was the only one that liked them. Luckily, I did make it out of the hospital so we can have another set done sometime.

Phase three, the post transplant stage, was not without its time of worry. After only 5 months, my numbers started spiking and I thought all was lost. That settled down and for two years, I lived a life of someone without cancer save the monthly blood letting at the Mayo. Other than my now ever present high blood pressure medications, I was just like everybody else.

I have now entered phase four, the stage where everyone realizes that the transplant has run its course and it is time for another intervention. When I first came to the realization that my body just couldn’t handle the cancer on its own, I was disappointed. The next two months were tough as I hoped for a miracle that just wasn’t going to come. There was no doubt; I needed to go back on chemo.

It wasn’t the fact that I was going to start up chemo again, it was the fact that it is likely that I will never get off of it, more than anything else. Aside from the transplant, there is nothing that can be done to make you chemo free. It took me another two months to get over that setback, but now I am fully ready to start that next leg of the journey.

This morning, I took my first dose of Revlimid. It is a perfectly innocent capsule that doesn’t look a whole lot different than any other over the counter capsule. It isn’t until you read the fine print that you realize that this isn’t your mother’s multiple vitamin.

Before I was even allowed to get a prescription for Revlimid I have to sign my life away. On four separate forms I had to state that I would not have unprotected sex with a woman of child bearing age. Of course, those were easy to sign as Julia looked over my shoulder. But it went even further than that. The fact that I had a vasectomy wasn’t good enough; I had to agree to have a second protection in place. Needless to say, they don’t want you fathering any children while using Revlimid.

The same holds true for women taking Revlimid. There is enough proof in laboratory animals that there is a good chance that any offspring could have some severe birth defects. In fact, I am the only one in the house that is allowed to handle the stuff. As you can imagine, swallowing that first capsule made me twitch a bit. So much for my life as a sperm donor (Can’t do that either, not that I ever would have. Who would have picked me anyway?)

Of course, it is going to keep me alive for a bit, so I’m not complaining. As a matter of cost, if it wasn’t for my insurance company I would be twitching all over. I don’t know the actual cost to the insurance company, but I have heard costs ranging anywhere from $5,000 to $10,000 per month. At this point, I don’t care what it costs (I can say that because I am only responsible for a $20 copay per month) because Dr.Mikhael believes I might be able to get another three years out of this drug. If you would have told me 2 ½ years ago that I would be worrying about what I would be taking in five years, I would have kissed you. Every minute matters now, another three years are a lifetime.

July 22, 2011 -- Mr. Tanner

It was a couple weeks ago when we were making our way back from our mini vacation in Las Vegas that I took the opportunity to listen to some songs on my IPod that I hadn’t enjoyed in a while. Not sure what it was, but I decided to listen to Harry Chapin’s Greatest Hits. If you are not familiar with Chapin’s work, he was a master story teller. It was more than the music, it was more about the words and his words were captivating.

You might be familiar with his hits, “Taxi”, “Cats in the Cradle” or “WOLD”, but the one that really grabbed me as it always does was the song, “Mr. Tanner.” Mr. Tanner owned a dry cleaning shop in Dayton, Ohio (coincidentally my home town.) As he would clean clothes he would sing to himself in a beautiful baritone voice and his customers couldn’t help but hear and appreciate the melodic tone.

Customer after customer would tell him that he should give up the shop and become a professional singer. Although reluctant, “music was his life” and finally gave it a shot. He arranged a concert in New Your City. It took all of his savings, but it would be worth it.

When the evening came, he gave it his best but only noticed his mistakes. Sadly, the critics only heard the flaws also. “Mr. Martin Tanner, Baritone, of Dayton, Ohio made his Town Hall debut last night. He came well prepared, but unfortunately, his presentation was not up to contemporary professional standards. His voice lacks the range of tonal color necessary to make it consistently interesting. Full time consideration of another endeavor might be in order.”

Mr. Tanner returned to Dayton and never let on what had happened in New York. He became just a shell of himself, never singing loud enough for anyone to hear. He had become a defeated, destroyed man. You have to wonder how often each of us face this same type of defeat and how we all handle it. Life is a series of defeats and victories, but too many of us allow the defeats to overwhelm us and not give equal justice to the victories.

Early in life, I would allow a defeat of my favorite sports team to ruin a weekend. I have since gotten past that. In my own life, I have had so many defeats that if I dwelled on those, I would have to hide in a cave all day. I think we all have to face the reality that we are not perfect and will, indeed, make mistakes and have failures but that is not what should define us. It should be what we do with the rest of our lives.

Harry Chapin died nearly 30 years ago when his car was crushed by a tractor-trailer. He had made a decision early in life that he would dedicate himself to more than the simple, easy things. Although music was his livelihood, it was not his passion. He did everything he could while he was alive to wipe out world hunger. It was something he knew he could never do alone, but he made it his driving force. He cared about others to the point that he angered his own band because he would donate as much as 50% of their income to fight hunger. The article below gives you an idea of just what lengths he would go to.

http://www.victoriaadvocate.com/news/2011/jul/14/bc-us-remembering-harry-chapin/?news&national-entertainment

Take a look at you own life and evaluate if you are doing enough with it. Don’t give something up because you failed at it once. Find something that invigorates you. Find something that makes you love life. Find something that makes others love life. In the end, get off the couch.


On the medical front, I will begin my next round of chemotherapy next week. It looks like the clinical will not work out, but I will be following the same protocol, with a high level of predicted success. Because it will be delivered through pills instead of IV, this will go a lot easier than my previous experiences. With luck, Revlimid will give me another 2 or 3 years of good health. During that time, you never know what else might become available.

Thanks for all of your thoughts and prayers. Keep them coming, they are appreciated.

June 17, 2011 -- They Shoot Horses, Don’t They?

In 1969, the movie “They Shoot Horses, Don’t They?” was released to a certain level of critical acclaim and 9 Academy Award nominations. Sadly, that acclaim meant little to me and my 16 year old brain as I watched a movie filled with depression. The movie is set in the Depression era and centers on the life of a young girl and the trials and tribulations that she faced.

To make money, people would do just about anything including dance marathons which is the center piece of the movie. These marathons could last for weeks as people would be on their feet for hundreds of hours with brief bathroom breaks in between. The title comes from the belief that we shoot horses when they are in great pain, but we have no solution for people when they are in either great physical or mental pain.

The reason that I bring up this movie is for two reasons, one being my current mental and physical state and the second being an incident that happened last weekend.

As has been stated by many in the past, when someone finds that they have an incurable disease, they go through many stages including disbelief, despair, hope and many others. I currently find myself in an interesting state of mind that finds my cancer slowly advancing, but it having little or no effect on my state of mind.

The nice thing about Multiple Myeloma, if there is a nice thing about MM, is that it is not a very fast acting cancer. Certainly it can take people very quickly, but generally you have years as it goes through its cycle. I’m now 29 months into that cycle (which coincidentally is the median life span of someone with stage III MM.) Despite the fact that my cancer inches slightly worse every month, I am in a great state of mind. I feel so good that it is easy for me to forget the fact that I am sick.

I’m sure others with cancer go through this stage. It is one that my doctor even talked about as an intermediate stage before the cancer starts to take its toll. The other reason that I feel good about where I am is because I have faith that God and the medicine that is out there will keep the cancer at bay for several years. It works for most, no reason not to believe that it will work for me.

However, the main reason that I picked this title is because of a run in I had with a couple horses on the way back from San Diego. Jason was in a 7 on 7 football passing league tournament on Friday and Saturday with his football team. As we have become accustomed, they won all seven of their games and won their second tournament of the season. He then participated in a football camp on Sunday put on by San Jose State.

We didn’t get out of San Diego until after 5:30 because some of the coaches wanted to talk to Jason and a couple other Hamilton players. The ride back was pretty uneventful as we did a quick McDonalds drive through and didn’t see a great deal of traffic. That all changed at 10:30 p.m.

The shortcut back includes a trip through an Indian Reservation. It is out in no man’s land and as dark as dark can be. The speed limit is 55 and the road is as straight as an arrow. I looked at the GPS to see how much further we had to go and that 27 minutes will be etched in my memory for the rest of my life. When I turned back to the road, there was a herd of wild horses rather casually walking across the road, far closer than I would have liked. In fact, far closer than at least two of the horses would have liked. I slammed on the brakes, but to no avail.

The sound was deafening as an adult and her young offspring were struck by the front of the car. The young horse was lifted up by the car and was probably dead before it knew what was happening as it crushed the windshield, the sunroof and Julia’s window. In addition to damaging the bumper, the hood and the roof, all four panels on the passenger side were dented. There were hoof marks on Jason’s window. The other horse that I hit just damaged two of the four panels on my side.

Amazingly, only Julia sustained any injuries as she had some minor cuts from the flying glass on her arms. The sight of those horses in my headlights is now etched in my memory despite my less than a second view. It happened so fast that we hardly had time to be scared. I still marvel how lucky we were.

I have been saying for a long time that I was not going to let Multiple Myeloma be my last chapter. I have gone so far as to actually say that I would not die because of it. I did not mean for God to interpret that as a wish to die at the hands, or I should say, hooves of a herd of wild horses. I need to be more careful what I wish for.

May 31, 2011 - Have you had your physical today?

As I approach my second rebirthday, I was reminded the other day how I got here when Justin asked Julia if she would set up an appointment for him to have his annual physical. I have to wonder how many 20 year olds even think about a physical let alone ask to have one. Understand that Justin is similar to his dad in that he is not an intimate friend with needles. Despite that, he will bravely go where few other people his age care to go.

Justin is realistic in his view of his life and health. Both of my parents died of cancer, his other grandmother currently is fighting tooth and nail with the disease and no one needs to be reminded that I am in the middle of my own fight with cancer. The chances of Justin getting cancer in his lifetime is certainly larger than the average person. He is attacking that the best way he knows how and that is to get an update on his health every 12 months.

One of the main reasons that I write this blog is to remind people that it is so important to keep their eye on their own health and to have a physical yearly. If I hadn’t, I very likely would not be here to enjoy my life. I might have been just a few short days away from a deadly heart attack.

Disease can sneak up on you as my good friend Paul Nardini found out when he had his physical last year. He felt fine but the physical revealed that he had Multiple Myeloma. He caught it early enough that he suffered no kidney damage and is currently in full remission. Had he not gone, who knows where he would be today.

It only takes an hour of your time to get a good idea of where you stand. Why not do it? I know a few of you have taken my advise, but I feel pretty confident that many of you have not. Don’t cheat your loved ones, make sure you are as healthy as you can be. It just takes an hour.

I had my visit with Dr. Mikhael on Thursday and despite the fact that my latest blood test showed additional growth of the cancer, we decided to wait another month to begin the clinical trial utilizing Revlimid and dexamethasone. After reviewing my blood test it has become clear that last month was a fluke and my body just can’t handle the disease on its own any longer. The continued worsening of the level of cancer in my blood stream is now a trend but has not yet begun to impact either my kidneys or my bones. Unless we see some kind of miracle in my results this next month (haven’t we heard that before?) I will start the clinical either in June or July.

This is hardly the end of the world for me. I still feel great and this combination of drugs has been very effective for the last five years. The potential side effects are numerous (blood clots, low blood counts, serious skin reactions, metabolic complications, diarrhea, constipation, tiredness and other complications.) However, every drug has its potential side effects many of which never happen. After going through the transplant, this will be a walk in the park.

I just view this as another step in the process. When I actually saw the results last Tuesday, I was disappointed but not despondent. Once I got over the fact that the transplant had run its course a few months ago, I came to the realization that this step was going to happen soon. Don’t get me wrong, I’m not excited about this, but it is something I can deal with. It’s just another speed bump on my way to an eventual cure. As always, I just strive to stick around until that happens.

May 21, 2011 - Fighting Your Handicap

It is one of the days that has been etched in my memory for nearly 50 years. It was a summer day like all of the rest in Ohio, hot and sticky. It was a day that I was playing with Tim and Mike Markus , the only neighbors that I ever spent time with. We had decided to hit a golf ball around their back yard. We each had a decent size yard, but we could never tie them together as they had a chain link fence designed to keep their long gone dog penned in. So we were in their yard hitting the one golf ball we shared. I was a year older than Mike and two older than Tim. Although never a superstar, I was bigger and more athletically inclined.

That size, however, caught up with me as I sliced a ball toward the Markus’ house. My eyes got bigger than a golf ball as I saw it hit the house and glance off. I thought I was safe but when we walked over to where it hit, it was easy to see that it hit in the middle of the kitchen window and Mrs. Markus was standing there looking out at us. No one made a big deal of it, but I felt like I had broken somebody’s arm. I was devastated and swore off golf. I probably should have stopped there.

However, time passed and another summer rolled around. Being that I was too young to really go too far away from the house (I wasn’t allowed to get a bicycle until I was in the eighth grade, but that’s another story), I had to find things to do around the house during the long summer. As a result, golf was rejuvenated. This time I stayed in my own yard and hit away from the house. I got some tin cans and buried them in the ground and made my own golf course. I would play for hours despite the fact that putting on two inch high grass was tough.

I finally talked my dad into taking me golfing. That is another day that is etched in my memory as we lasted two holes and about 25 shots apiece. We decided that golf wasn’t our game and headed home. It wasn’t until I was 15 that I started golfing again with two of my friends from high school, Mark Kroger and Mike Meixner. We weren’t very good, but we had some great laughs at each other’s expense. We would get a ride from a parent and then rent a hand cart and play 18 holes and then get picked up by another parent. It would take us all day and not drain our piggy banks.

The third day that is blasted in my memory was one of the days that we played 36 holes. Apparently, Mark had not told his parents that we were playing 36 holes and they somehow tracked him down on the course and left without Mike and me. Not to be undone, we continued to play. When we finally got back to the clubhouse and called home from the pay phone, we found that there would be no ride home, we would have to walk. We had just walked 36 holes and would have to walk home carrying our bags. For me, that walk would be three miles. It is amazing what a 15 year old body can do.

The fourth day that I will never forget was years later and is the day I shot a 77 on a par 72 course. I was on fire that day and could not miss a putt. You have to understand that I probably only had a handful of rounds that I have shot in the 80’s and high 80’s at that. Not sure what happened that day, but I can remember almost every shot. I still have that scorecard somewhere in my collectibles.

The fifth and last day that is etched in my brain just happened a couple of weeks ago when Justin and I went out for the first time. All four of us have played together before in a league when the boys were young, but this was different. It was the first time since Justin decided to give up baseball that he utilized his athletic abilities. We had been hitting at the driving range for a few weeks, but this was the first time he would stand and the first tee and know that what he did mattered. Despite a bit of nerves, he was able to get the ball into the fairway and we were on our way.

Not sure what it is or why it is, but there is something special playing golf with your son(s). Hopefully, I will be able to get Jason out, but that might be a while or at least until he, too, gives up baseball. That Sunday was special. We didn’t set any records, but we did have fun. There is something about the game that brings people together that are playing. It is a game that has more frustration than any other. You can be playing a great round and one hole can ruin the day. There is no maximum on a hole, there is a reason that the game can make you cry.

It was a couple months ago that I decided to get back into golf. It had been about a decade since I had really played much and the first time out I lost one of my clubs. I took that as a sign from God to buy a new set. Understand that I have only owned three sets of golf clubs in my life. I have friends (Jim Sibert, you know I am talking about you) that can have that many in five years as they look for that elusive smaller handicap. It was my way of rewarding myself for lasting this long with my new handicap, Multiple Myeloma. It was also a way to push back at the disease that I wasn’t giving up and was going to live life like nothing was wrong with me.

There is just something about the game that despite driving you nuts, just keeps calling you back. Now I get to do it with my son. Life can’t get any better!

April 26, 2011 - Mark Twain Lives!

I’m starting to feel a little bit like Mark Twain. One of his most famous quotes was "The reports of my death are greatly exaggerated." There has been a great deal of discussion if those were the exact words that he used, but the fact remains that he made a heck of a comeback from what many thought was his demise. There haven’t been any reports of my death, but it certainly crossed my mind a few times after my last blood test.

I’m not going to try to kid anyone on my thoughts after that test, but no matter how hard you try to stay positive, it sometimes gets tough when what you have worked hard for seems out of reach. That is the way I felt last month when I saw my blood work up and realized that remission was indeed gone and I was bound for more chemotherapy, probably for the rest of my life. But at the same time, the fighter in me gave my pessimistic side a swift kick in the head and Yogi Berra’s famous quote came to mind, “It ain’t over ‘til its over.”

The optimist in me found its way back to the top and I realized that no matter what, I needed to take every day as a gift from God and just continue to move forward. With that in mind, I went through a series of tests at the Mayo with the intent things had not gone too haywire and I would be starting some brand of chemo next week.

The day went pretty well considering I had had some level of mishap with just about all of the tests that I would be part of. The first was the 24 hour urine test that, if you remember, I had a rather embarrassing moment when I turned it in once after not sealing it properly and the container was drenched in you know what. This time it went off without a hitch as I triple checked how I screwed on the lid. I did forget it in the car, but Julia was kind enough to make the trek out to the parking lot to get it while I waited for my blood test.

The last time I had a blood test I almost passed out. The technician (and I use that term lightly) seemed to be digging for gold instead of actually placing the needle in the vein. I can handle that for a bit, but this seemed like it lasted the entire gold rush. This time, it went in the first time and I was out almost as fast as it took me to sit down.

The next test was the bone marrow biopsy. The last time it went well but I ended up flirting with the gay nurse while I laid there half naked. Amazing what drugs will make you do. This time it was in and out and I got to keep all of my clothes on. I was a little sore after, but that is the price you have to pay for progress.

The last test was the easiest which was the full body scan. I have never had a problem with this test other than it is about 30 x-rays and I am always afraid of glowing in the dark at night.

So other than the fact that I was rather sleepy, it was a good day. I knew that I would get the blood test back today, so I would have a good feeling of where I was even before the bone marrow biopsy was back. That was when the real surprise came and I started to feel like Mark Twain. Instead of continuing in the downward spiral that I had been for the last few months, I actually showed improvement.

Because the cancer was up the last few months, my kidneys were starting to throw a pity party for themselves and my creatinine went from 2.2 to 2.6 as the cancer number had risen from 5.6 to 14.0. As Dr, Hogan told me last week, that wasn’t the end of the world, but it was important that we kept an eye on it. It is my own personal opinion that as long as my kidneys keep working, I will have a much longer shelf life.

The blood test showed my creatinine back to 2.2. The cancer dropped back to 13.2 from 14.0 and most of the other issues came back down into the normal range. My bone scan showed no appreciable decline since the test I had in December, 2009.

I have no idea what this means in the long run but as my daddy used to say, “It’s better than getting hit with a stick.” Will it continue? I have no idea. But what it does mean is that I can put off chemotherapy for another month. Now we are looking at another blood test at the end of May and a decision will be made at that time. Who knows, maybe I have another minor miracle in me!

Keep up the cards and prayers! You have no idea how much they are appreciated.