January 30, 2010 Fran

When we made the decision to move from Ohio to Arizona there were a number of issues that were considered. Some were easy, some were not. The opportunity to take a new and challenging job was at the forefront of the easy ones. I was miserable in my old job and I was starting to bring it home. Even the boys noticed a change in me. At the time, I thought that if I stayed, it might kill me in the end. Little did I know that cancer might have already been in me when I left.

On the other side of the argument to leave was what we would be leaving behind. Justin would be giving up his senior year in high school. This is the part that I will second guess for the rest of my life. We moved to Powell with the intension of staying there until the boys graduated from high school. Because of my need for change, I asked a lot of Justin. I hope he understands how much I appreciate what he did.

For Jason the move was easy. Yes, he was moving away from all of his friends, but he looked at it as an adventure. He couldn’t wait to get out to Arizona. It meant great weather and more baseball. He came out earlier than Julia and Justin just so he could be networked by the time summer came.

As tough as the move was for Justin, it was even tougher for Julia despite the fact she has never said a word. Julia has always been very close to her family and I know the move was hard on her. I guess that is what love and marriage is all about.

The reason that I am bringing this up is that Julia has gone back to Ohio to spend some time with her family and in particular with her mother, Fran. Fran and I have shared the burden of cancer for almost the exact same time period as she found out just days after I did. We have always been close, but I think this has drawn us even closer.

Fran and I have always referred to ourselves as the “outlaws.” It seemed like it was us verses the rest of the family, not in a bad way, but in the way that we were put together. The Millers are a great group, but they all seem to have the same tendencies. Julia, her dad, her brother and grandparents share a number of the same qualities.

They are all very methodical about how they run their lives. They study everything before they make a decision. Fran and I tend to move without thinking sometimes. The rest of the Millers tend to take their time and enjoy smelling the roses. Fran and I take a quick look and then move on to the next flower. We are more worried about getting there on time than what happens when we get there.

I’ll never forget the first time that I visited Rockford. Julia and I had only been dating for a short time, but she felt it was time to show me off. There was inherent danger in this because I did not fit the Miller mold. I was divorced, old, Catholic and worst of all, Republican. Yet despite all of this, Fran made the house look like the President was coming.

That was just the start of it. I would come back from every visit weighing five pounds more than when I got there. The food was always great and there was plenty of it. I have always kidded Fran about being my favorite Mother-in-law, but the cooking clinched that title long before Julia and I were married. My ex-Mother-in-law wasn’t a bad cook, but I would always have to eat rhubarb pie every time I visited. Ugh.

Christmas always took Fran and I to a new level of togetherness. The only real present that I cared about was the one Fran would give me and the present that I took the most time getting was the one I gave her.

It all started pretty innocently when I was presented a huge lump of coal. Not to be outdone, I spent the next 364 days plotting how to get her back. I had some good ones over the years including a book on Monica Lewinsky(Bill Clinton was always her favorite.) Despite all of that, she always seemed to outdo me. My favorite was the used toupee. She always enjoyed the hair thing as I also received a few chia pets over the years.

Fran and I have always had each other’s back when it came to disagreements within the family. It was the Millers against the outlaws. We now have taken on cancer together. We talk more than ever before and prop each other up when we need it the most. We have even used the same chemotherapy. We have made a pact that we are not going to give up on living. I’m just glad I have a fellow “outlaw” to keep me going when the time get rough.

Make sure you keep Fran in your thoughts and prayers as we both try to do the impossible.

January 23, 2010 The Beast

It was sometime in the early 1960’s when my dad took Paul Decker and me to Coney Island in Cincinnati. It was the first time that I had ever been to an amusement park and it was still the day of buying tickets for each ride. It was that day that I rode my first roller coaster. It was love at first scream.

Coney had been around since the 1880’s and was on it’s last legs. In 1972, the company that owned Coney moved the rides away from the banks of the Ohio River to a community north east of Cincinnati called Mason. In the blink of an eye, the amusement park went from being old and crumbling to new and exciting. At one point, the company held 1,600 acres of land. Kings Island was now an adventure with many new rides on the way.

In 1979, the Beast was added. It was long, fast and scary. Roller coasters were still made out of wood at the time and 30 years later it is still the best way to make a coaster. When you get off of the Breast, your body hurts, but it is a good hurt. Since that time, I have ridden nearly 100 different coasters and the Beast is still my favorite.

The reason that I even bring this up is that I was reminded by my latest trip to the doctor that our lives can easily be compared to a roller coaster. It doesn’t matter what we do with our lives, it will be a series of ups and downs. The thing you have to learn is to not get caught up too much in either of those swings.

I’ll never forget the excitement of getting married in 1975, but I’ll also never forget the fact that my wife (ex-wife, not current) didn’t bother to come home the night of our second anniversary. The thrill of holding Jason for the first time was one of the highlights of my life, but having to rush him to Children’s Hospital 13 months later with a 105 degree temperature reminded me just how precious life is.

Shortly before I graduated from college, I was still looking for a job. I was lucky enough to get an interview with Timken, a roller bearing company located in Columbus. Getting a job was extremely hard in 1975 and just getting the interview was exciting. That same day, my mother had a good section of her lung removed in hopes of stopping her cancer. A cancer that took her life four months later.

I was offered a job that day which changed my life forever. If I hadn’t been hired by Timken, I might have ended up managing a McDonalds. When I received the official offer letter, I about fell over. It was 30% more than I had anticipated. Indeed my life had changed, I was overjoyed. What I didn’t know was that the three years that I worked in that filthy, fume infested plant might eventually be the cause of my multiple myeloma.

No one knows unequivocally what causes multiple myeloma, but the belief is that environment has a great deal to do with its beginning and it may be 20 to 30 years before it manifests. Due to the fact that I never really had any exposure to any other harmful agents leads me to believe that my cancer might have been started 35 years ago just out of college.

It was a year ago today that my latest adventure started. It has been a year of ups and downs. A year of self discovery. That learning has not stopped as I found out two days ago when I visited Dr. Mikhael for my latest check-up.

If you remember, I was only going to have my blood tested every other month to see how the cancer was progressing. I was to go in November and then again in January. My cancer number increased in November but that was not totally unexpected as the results likely will have peaks and valleys since I did not have a full remission.

Because my creatinine number was up significantly in November, I was scheduled for another blood test in December. The kidneys had corrected themselves and creatinine was back down, but the cancer number was again up and up much faster than expected. I was nearly to the point of needing more chemotherapy. Dr. Mikhael even mentioned getting another bone marrow biopsy (not exactly high on my list of things to do.)

I was crestfallen. The fact that my cancer was advancing quickly was devastating to me. The transplant had failed. The up that I had felt just three months before was gone, replaced with a terrible feeling of doom. I had forgotten that life is filled with ups and downs and I shouldn’t get too attached to either.

After two weeks off from work, I insisted on another test and received some encouraging results as the cancer number had fallen slightly. Even though it was a small change, it was a positive one. Any good news when you have cancer is great news. The next test scheduled for January 18th was going to be huge. Good results and I breathe easy for a while. Bad results and it is chemo time.

When Dr. Mikhael told me that my number had dropped down to the low 7’s from the 9’s the weight of the world was lifted off of my shoulders. My body was again beating the disease. I was winning. Another time for joy. Oddly, if my kidneys had not acted up in November, I would not have had the December test and would not have worried needlessly. Funny how the ups and downs of a roller coaster can jerk you around.

What I have taken from all of this is to become less worried about the numbers each month and worry about just living. Too often we all get tied to the latest event in our life and not looking toward the future. We are too worried about the work associated with moving up the roller coaster and not thinking enough about the thrill of the dive. Enjoy your roller coaster life. Don’t spend too much time dwelling with the pitfalls and enjoy the thrill of the ride.

January 18, 2010 Avatar

One of the things that I have experienced over the last year is an increased ability to cry. Obviously, this isn’t something that I going to brag about the next time I go out with the boys, but it is certainly real. As I have gotten older, I have become more emotional, but I have now reached new heights in tear flow.

Now, don’t misunderstand, I’m not sitting alone on the couch in total darkness sobbing to myself. It actually isn’t even directly related to the fact that I have cancer. It is all about TV and movies. I can’t go to a movie anymore and not find something to get teary-eyed about.

I notice that “Up” won a Golden Globe award on Sunday as the best animated movie of the year. I could have saved them all the time of counting the votes. I could have used my “tear index” to tell them the winner. I’m watching an animated movie about an old man, a kid and some animals and I am breaking down in the theater. I am now crying because a cartoon character died in the lead character’s past. Yes, a cartoon character.

This leads me to a discussion about “Avatar.” If you are not a moviegoer or have lived in a cave for the last six months, Avatar is the latest from James Cameron that has already grossed over one billion dollars worldwide. I had been eagerly awaiting it’s arrival at the box office, but through a series of circumstances took almost a month before actually viewing the blockbuster.

It became a joke in our household as I insisted on viewing the film on an IMAX screen in 3D. Just a regular viewing was not going to be enough for me. I told Julia that it was going to be a “once in a lifetime experience.” I was mocked for over a week after making that claim, but nothing was going to stop me from enjoying the movie to the max.

I have been a science fiction fan since my early teenage years. I remember watching “ 2001: A Space Odyssey” and just being mesmerized. I have followed in my father’s footsteps and had been reading scifi books for several years when “2001” hit the movie screen. My dad only read the sports page in the Dayton Daily News and science fiction books. I still have hundreds of those books stored in my basement.

As a result, it was in my blood. The fact that “Avatar” was a science fiction that was being directed by Cameron, had me at the edge of my seat for months waiting for it to arrive. You think kids look forward to Christmas, you should see me waiting for a James Cameron science fiction movie.

The day finally hit and I insisted on getting to the theater nearly an hour in advance. The last thing I wanted was to be in row 1 looking up at a six story screen. Again my actions were ridiculed, but I pushed forward. Finally, the movie started and 60 seconds into it I had a panic attack. Because of the 3-D and the movement of the camera I immediately started getting sick. My world was coming to an end.

You see, about 10 years ago, something happened to me that caused me to get a headache and upset stomach when I watch home videos that I have made of the boys if there is any significant movement on the video. No problem making the video, just watching. I was now panicking that my once in a lifetime experience would turn into a pool of vomit at my feet.

Luckily the action settled down and the once in a lifetime experience turned into even more. For the next two hours and forty minutes I became a part of the movie. The move is so vivid, so amazing that you cannot help but be drawn in. It makes you become alien and root against the humans. I’m not going to spoil the movie by telling you any more, but take it from me and even my skeptic, non-science fiction loving wife, the movie is unbelievable.

For much of the 160 minutes, I sat there, an emotional mess, crying one minute and rejoicing the next. I cannot even describe what I felt, it was so profound. I know that sounds utterly ridiculous, but I was so drawn into the action that I felt like I was part of it and it was my family, my race, my religion I was viewing.

After we exited the movie, I was amazed at how I felt. I now know what heaven will look like, save the wild man eating beasts of the planet, Pandora. The cinematography was so unbelievable that it had to be heaven. The wonders of the planet were so lifelike that you could imagine what they smelled and felt like. I have never seen anything like it in over 50 years of movie going.

I realize that I am a geek and most of the rest of you are not, but I cannot suggest any more strongly to see this movie. It is as much a love story as an action movie. Just go to be part a “once in a lifetime experience.” You will not be disappointed.

January 16, 2010 Getting Old

It is amazing what happens to us as we age. Our body decides to operate differently than it did before. Often the change is so slight that we don’t even notice. It reminds me of the first time that I put on a pair of glasses.

My vision was getting worse and worse when I was 11 but I was the last to know. I was able to play baseball but the number of times I struck out was alarming. However, being 11, I just thought I stunk. Yet, the incident that drove it home was during the spring after I turned 12, I was playing in the garage because it was raining outside.

Being an only child, I had to find ways of keeping myself busy and often played games I created that had something to do with a sport. When it was nice outside I would throw a Superball (now called bouncy balls) against the side of the house by the driveway and play a modified game of baseball dictated by how quickly I would field the ball, throw it back against the wall and field it with my foot on an imaginary bag. If I would do it under the count of 10, the guy was out. If it got by me, every count of ten was another base. Twenty for a double, thirty for a triple and so on. We had weeds on the other side of the driveway, so if it got by me, who knows how high I could count.

Since it was raining, I had to make modifications and do it inside. Only problem was that I used a golf ball and the wall that I threw it against was a finished, plastered painted wall. When my dad got home, the sound I heard would have rivaled the atomic blast at Hiroshima. Apparently, every time I threw the ball against the wall it made a dent. Because of my poor vision, I did not notice the hundreds of dents in the wall. The wall now looked more like a golf ball than a wall. This was the first proof that I was slowly losing my ability to see.

After my dad cooled down, it was decided that I needed to see an eye doctor. It seems my right eye wasn’t too bad, but my left I was terrible. After I got my glasses, I remember looking out of my bedroom window and actually seeing individual blades of grass. I was amazed. Little did I know that what was happening to my eyes would eventually happen to the rest of my body. Only problem is that there is no quick fix like glasses.

A day doesn’t go by that I don’t have some new ache or pain. When I run up the stairs, I look around for an oxygen tank. When I try to wrestle with one of my kids, I feel like the 98 pound weaklink that has sand kicked in his face. What really struck me, though, was when Matt Hare updated his blog and discussed how many stem cells they were able to gather for his transplant. I was as proud as a new papa when I found out that I had gathered over four million the first day. The total goal was nine, so I felt good about having only two days hooked up to the machine. Most take three or four days, so I felt like I had kicked some serious butt.

Matt had mentioned in his blog that he hoped to get his nine million in one day. I sent him a note trying to ease him down so that he would not be disappointed when he didn’t reach his goal. How in the world could he get nine in one day when I only had four? Poor misguided kid.

Then I read his blog. Fifteen million. Yes, he collected fifteen million in one sitting. Heck, he could have taken a break and had a White Castle or two and gotten his nine million. My God, youth is a wonderful thing.

This brings me to the reason that I am talking about age. It seems that I was born on this day, 57 years ago. I have often wondered why we celebrate our own birthdays. Shouldn’t this be a day that the mother is celebrated? She is the one that went through all of the work. Back in the 1900’s when I was born, there was no epidural for the mom. It was head on pain and my mother went through 18 hours of it.

I’m afraid that I lost her 35 years ago, but I still appreciate what she did for me and what she put up with for the 22 years we had together. Thanks, Mother. (She never let me call her Mom. It made her feel old. Her mother was referred to as “Mom”, even by her grandchildren.)

Make sure you thank your mom on your next birthday. Just remember, she is the reason that you will get some birthday cake on your day.

Since this is supposed to be a blog about my health, I suppose I should stop pontificating and get to that part of my life. If you remember, I had another blood test after my two weeks of vacation. Apparently, I deserve my Dr. Kildare lab coat as my theory is at least partially right in that my cancer count dropped slightly (9.45 to 9.01). Certainly not statistically significant (just trying to use words I learned in college), but at least movement in the right direction. I take both a blood test and a 24 urine test on January 18. This will be very important as it will help decide if I need to go on some type of maintenance drug or chemotherapy. I’ll have results on January 21. See you then.

January 6, 2010 Friends

There is an old adage that talks about throwing spaghetti against the wall to see if it sticks. If it does stick, you know it’s completely cooked. That phrase later became part of the business vernacular as spaghetti became ideas and the purpose was to come up with as many ideas as possible and see which ones worked.

I never really thought about it until the other day, but that is the way we are with friends. You meet thousands of people over a lifetime but few stick around as friends. In the last week, I have met at least 10 new people. I doubt that any will become lifelong friends. You never know, but the likelihood is slim.

Sometimes it just takes a while for the friendship to blossom. You may meet someone, have fairly minimal contact and then go your separate ways only to get reconnected in the future. Over the last six months I have had one of those reconnections change my life.

With all of the teams the boys have played on over the years, they each have had fifty or more coaches. Because of the amount of time you spend with those teams, there is a decent likelihood that a friendship will occur. One of my best friends in the world is Chuck Gould, who coached Jason and Justin for three years . Another of those friends is Chris Valentine, who oddly enough, became a friend as a rival coach before he actually coached Jason.

A couple of summers ago, Chris put together a team of top players from the Columbus area to play in some post season tournaments. The boys did pretty well and we all had a lot of fun travelling around the state. One of Chris’ long time friends, Matt Hare, helped coach the team. I really didn’t get to talk to Matt much, but he seemed like a good kid.

Oddly, the thing that made Matt stand out to us as a family was something Julia’s grandmother, Marge, said while we were at one of the tournaments. To fully understand why this particular comment stood out, you have to understand Julia’s grandmother.

Marge is now 93 years old and has been married to Lester Miller for 70+ years. She is as nice as they come, but she is generally a very quiet and conservative person. It was just before the start of one of the tournament games that she attended, Matt happened to walk by and Marge commented on how nice his legs looked in the shorts he was wearing.

To most, this might not mean much, but knowing Marge as we do, the entire family just about fell out of their chairs with just the thought that Marge would even be looking at a 22 year old’s legs, let alone commenting on how nice they looked. Because of that comment, Matt would never be forgotten in the Churan household.

After the tournaments ended we all went our separate ways and other than retelling the story, Matt drifted from our lives. That was until Chris noted on his Facebook account that Matt was ill this past summer.

Matt was tired and losing a good deal of weight and the doctors could not discover what was wrong with him. However, as Chris described some of the symptoms to us, it started to sound eerily familiar. After weeks in the hospital, it was confirmed, Matt had Multiple Myeloma.

This seemed impossible. Matt was 25 years old. It was unlikely that I, a 56 year old, would even get the disease. This is a disease of old people, certainly not 20-somethings. To add to his problems, Matt also had an accompanying disease, amyloidosis, also a disease that does not normally attack young people. Multiple Myeloma causes plasma cells to malfunction and they lose the ability to respond to controlling signals from immune cells. As a result, abnormal proteins are created that damage bone, bone marrow and other organs. Amyloidosis is a disease in which an abnormal protein (amyloid) builds up in organs and tissues, impairing their function. Both of these disease are treatable, but not curable.

Needless to say, Matt was dealt a hand that just should not have happened. He was too young and too healthy. As one might expect, this was a crushing blow to a young man with his entire life still ahead of him. He was in the hospital for seven weeks as they struggled to discover the cause and begin treatment. An infection from his port caused a trip to the ICU and a great deal of concern for friends and family.

Like myself, Matt has had his battle with doubts about recovery, but through it all, he has remained upbeat with the knowledge that God is on his side. He has shown remarkable progress and has wonderful results from his treatment with Velcade. His Multiple Myeloma is in remission even before his stem cell transplant. The strength that he has shown through this whole thing is amazing. I want to be Matt when I grow up.

The amyloidosis has not shown as good of a response but there is good news as his organs do not show significant damage. I know I have left out a million details so when you have a chance, visit Matt at his blog, please take a read. You will be amazed at the strength of this young man.

http://www.caringbridge.org/visit/matthewhare/journal

Matt will go into the hospital on January 18 and receive his massive chemotherapy that starts the transplant sequence that same day. He will follow a schedule much like mine and start to feel the effects a few days later. Hopefully, his youth will speed his recovery. Please keep him in your prayers.

Until both of us ended up on the wrong end of an IV, Matt and I lived our somewhat care free lives independent of one another. Because of Multiple Myeloma, we have struck up a friendship that will last for the rest of our lives (hopefully, long lives.) There are many things that draw people together as friends. Sometimes those things are good, sometimes they are bad. For whatever reason, God decided that we needed each other years before the actual discovery of cancer. My, He does work in strange ways.

January 4, 2010 A Week in the Basement

In the movie, “Up in the Air”, George Clooney’s character, Ryan Bingham instructs attendees at a seminar that they must rid themselves of their attachments in life. In it he states, “How much does your life weigh? Imagine for a second that you're carrying a backpack. I want you to pack it with all the stuff that you have in your life... you start with the little things. The shelves, the drawers, the knickknacks, then you start adding larger stuff. Clothes, tabletop appliances, lamps, your TV... the backpack should be getting pretty heavy now….The slower we move the faster we die.”

In it, he also states that we shouldn’t keep photographs as they are for people with bad memories. To Bingham, you need to live your life without attachments, without things. He lives a solitary life that in the end, he finds disturbing. I cannot say I live that life. In fact, this last week really drove that home.

When we returned home from the cruise, I took it upon myself to attack the one major storage area in our house, one of our spare bedrooms. Unlike the Midwest, where everyone has a basement that houses all of the junk they have accumulated in their life, Arizona does not afford you that option. Every house that we have purchased afforded us a bigger basement and as a result more stuff. Although much was jettisoned during the move, much remains. That one bedroom had gotten so cluttered that we could barely open the door.

As a result, I decided to take the next several days to try to sort some things out. With some help from the rest of the family, that spare bedroom now can be entered without taking your life into your own hands. Yet, through that process, I went through 60 boxes of stuff. Some were easy and thus fast to replace. Others were not. They tended to be the ones with the most memories. The memories that Bingham looks at rather lightly.

I found everything under the sun. I found the little white hat with the small brim that I must have worn when I was two. It had “Johnnie” embroidered on the front and enough aging stains to make it look more brown than white. I found an old rattle from my childhood and pictures of my parents and grandparents from their wedding days. I found things that only hold special memories for me that when I’m gone will mean nothing to those left behind.

When the boys actually became involved, they went through their lifelong ritual of either playing with toys from their youth or trying on clothes ten years too small. They found things that they had either thought long lost or completely forgotten about. It was an opportunity to relive some of their youth. Yea, I know they are still young, but for some reason we all want to believe we are kids again.

After all of this reminiscing, Justin suggested that we watch old videos. Those that know me well, know that I have been a nut about taping the boys from day one. I probably have five hours of Justin eating baby food although that probably isn’t hard to believe if you look at him today. Julia gets to get in a shot every once in a while but that is usually to clean up a mess that the boys have created. If it wasn’t for my comments while doing the taping, you might not know that I even existed. Putting it simply, this taping is about the boys, an opportunity for them to relive their youth later in life.

What I have found, however, is that they like to watch them now, even while they are still young. It seems like we all want to go back and enjoy the good times of our lives no matter how young, old, rich or poor. Our lives are filled with a mish mosh of good and bad, joy and pain. We are drawn to the good times and want to relive them as we slosh through the times that may not be so joyful. Unlike Bingham, I’m glad I have brought along the weight of my past. It has made me what I am today.

We ended up watching about three hours of home videos last night including four of Jason’s birthdays, only one of which found him crying because he didn’t like the cake. I know that particular bit of information seems odd, but for some reason Jason found several cakes lacking over the years. Even though we have watched these videos numerous times, we laughed till we cried more than a few times

As an update to my ongoing battle, I had blood drawn at the Mayo this morning as I have once again put on my Dr. Kildare lab coat. In looking at my results over the past several months, it is obvious that the cancer began its comeback when I returned to work full time. After having two weeks off from work, I thought it might be a good idea to see how the cancer behaved while I just relaxed. Not sure what I am going to do if there is an improvement, but stay tuned.