September 22, 2009 The Big “R”

It is hard to believe but it was exactly eight months ago today that I went in for a simple physical. I had gone longer than I normally would because of the move to Arizona and not having a regular doctor. My life has been filled with ups and downs but today topped all of the ups that I have received during those eight months. It was today that would mark the beginning of my life as a cancer survivor.

Multiple Myeloma is a disease without a cure. I came to grips with that a long time ago. Yet, I never gave in to the belief that MM was ever going to beat me. Certainly I had my days of doubt, but I refused to succumb to the power of cancer. Deep down inside I knew that I would eventually win. I’m not exactly in the winner’s circle, but I am certainly within earshot.

Today I received the official word that I am in “very good partial remission.” Doesn’t sound like much does it? It sounds like the title of fifth runner-up in a beauty pageant. In reality, it isn’t all that bad. In looking at the raw numbers, my lambda free light chain that measures the amount of cancer in my bloodstream has dropped from a high of 65 down to 5.98 with normal being as high as 2.63. This is an improvement from last month when it was at 8.12. The amount of protein in my urine is down from a high of 1.000 gram in 24 hours to .142 with normal being less than .103. All of this puts me at a 90+% improvement which throws me in the “very good partial remission” group.

It is very difficult to put into words what this means to me. Certainly the ability to have Big Macs again last week was huge, but this makes that look like the 1962 Mets. I now have the weight of the world off my shoulders. I can go to sleep without that constant nagging of worry of ,“What is the cancer doing to me now?” I still have to carry a backpack of worries, just not the world.

This is not a cure, but then none of we MM survivors have a cure. We have to live day to day knowing that it will come back at some point. That doesn’t, however, keep us from enjoying that day and the next and the next because they are making wonderful strides with this disease and hopefully in my lifetime they will come up with a cure.

Dr. Mikhael will continue to monitor my progress and I will have another blood test in two months and a full body scan at that time. We will make decisions as we go as I am not on any maintenance drugs of any kind. If the disease starts to make a comeback, there are many options short of another transplant to keep it at bay. However, as Dr. Mikhael never forgets to remind me, the average length of time between transplants is 18-24 months. I will continue to scoff at that until my time comes.

I cannot begin to tell all of you how important all of your prayers and well wishes have been to me. If it wasn’t a comment here, it was something on Facebook, an email, a call or a card in the mail. I’m a firm believer in the power of the mind and the power of prayer. What all of you have done for me will not be forgotten and I thank you all from the bottom of my heart.

I am going to miss my updates on here and the interaction that it caused. Julia seems to think I should keep writing, but I’m afraid my normal life is far too boring to keep people awake. This outlet has given me the opportunity to say things I would normally not say and I appreciated that. Sometimes it is hard to say things that are in our hearts to the people we love and this gave me a way to express those feelings.

I will post updates on here as I get results from my tests so you might want to check in every couple of months.

In parting, I want you to remember that the amount of money in the bank means little when you don’t have your health. Please remember to have a physical every year. It saved my life, it could save yours.

September 12, 2009 Day 100

Needless to say, this was one of the most important days in my recovery. This is despite the fact that nothing really happened. There were no tests, no results, just a ticking of the clock and a changing of the date. Day 100 is something that I have pointed to since before the transplant. This was to be the day that I was to be back to normal. This was the day that I could just be me and not be constantly thinking about having cancer. More importantly, it was going to be the day that I had a Whopper.

The problem with trying to be normal is that I’m not sure what normal is anymore. Because I had this disease for some period of time before I realized I had it, I had convinced myself that I was just getting old and I had to deal with everyday aches and pains. Some of those aches and pains have disappeared only to be replaced by others. Is that now the new “normal?”

The good thing is that I feel considerably better than anytime in the last nine months. My energy level is getting back to something that is livable. In my own mind, I had imagined that I would be ready to take on just about anything at this point. I have not yet gotten there, but I have gotten to the point where four+ hours of work does not completely do me in. When I left work on Friday, I actually felt like I had a little bit left in the tank.

I guess I shouldn’t complain. I wasn’t even supposed to come back to work at all until September 14 and I have already worked five weeks of part time days only missing one day in that time period. Everybody at work has been great (as usual) and insisted that I take it easy and not overdo it, but part of what drove me was to be back and making a contribution. My next goal will be to convince Dr. Mikhael that I can start to stretch it out a little more. I will be happy the day I feel well enough to do the traditional 8 to 5 day.

Another nice thing about day 100 is that I can get off of my medication. Due to the reduced immune system, I needed to take three different medications to create an artificial one. It seemed to work as I have not even had the sniffles. However, I think my body was starting to react to the constant bombardment of these drugs. I’m hoping that my withdrawal from those drugs accelerates the process back to normalcy.

Day 100 was as much about eating as anything. I have been religious about the little things like no fast food, no fresh vegetables or fruits and no ice due to potential bacterial infections. Saturday was my day for breaking through those barriers. Saturday was my day with the Burger King. I’m not sure why, but my first fast food was going to be a Whopper (Maybe they can do a commercial about the experience with Brad Pitt playing me at the BK. Hopefully he’d be willing to shave his head.)

I followed that up with a salad at J. Alexander’s as Julia and I celebrated our anniversary a couple days late. To make the day even crazier, I let them put ice in my Sprite! I love living on the edge.

All in all, the 100 days has gone pretty quickly. During that period of time I have had my ups and downs. I have had my doubts about recovery and felt the relief of that anxiety after the results of my first blood test. I lost my best friend which was extremely hard, but I have been able to see my kids play baseball and football. To top off the 100 days, I got to spend a night with my amazing wife celebrating another anniversary.

I’m still not 100% physically, but I am a long way from where I was. My hope is that all goes well when I meet with Dr. Mikhael on September 22 as we discuss where I am and if I can say that I am in remission. Now if I can just manage to deal with the 24 hour urine test without the difficulties I had last time, life will be good.

September 10, 2009 To Have and to Hold

The date was August 23, 1975 and I found myself walking down the aisle of a church in Plymouth, Michigan. It was in the 90’s and extremely humid that day. The church didn’t have air conditioning and the reception hall lost theirs the day before. I should have realized at that point that there might be some difficulties in this marriage.

The date was August 23, 1977 and I found myself alone because my wife decided not to come home that night. No call, no nothing, just no show. It was at that point that I realized that there were more than difficulties in this marriage. I’m not the brightest guy in the world, but when my wife had a date on our anniversary and it wasn’t with me, I surmised that it might be time to start looking elsewhere.

The next decade was interesting to say the least. I had more than a few loves in my life, some only lasting a week or so, one lasting three years. But having become a one time loser, I was bound and determined not to make it two. As a result, I became extremely cautious in my relationships. Not afraid to fall in love, but certainly afraid to commit.

Then one day, I was taking out one of the administrative assistants (Diana) from Human Resources for lunch. This was one of those real stretches for me as the young lady, although certainly attractive enough, would never go for a pauper like me. When I went to her office to pick her up, I notice this cute little thing sitting at her desk. Little did I know at the time that cute little thing would eventually become my wife.

During lunch that day, I asked Diana who the new girl was. After getting all of the scoop, I played like I was in the fifth grade and asked her to see if there might be any mutual interest. To my glee, there was. One thing led to another and before long were we were in love.

On the one year anniversary of our first date, I popped the question. The first words out of Julia’s mouth was “Are you sure?” She could count the bottles of wine just as easily as I could, but I knew what I was doing. She knew my past as well as I did and she knew my hesitation to commit in the past. Yet for some reason, I knew this was the one.

So on September 10, 1988 I found myself walking down the aisle once again. Instead of it being hot and humid, it was a day in paradise. It was 72 degrees and sunny. The wind didn’t blow a bit which made the pictures that were taken outside unbelievable. For those of you in the Columbus area, you know that there are only about two days every year that are that perfect. It just so happened that God saved one of those for us.

The wedding went according to plan; that is Julia’s plan. This was one of those things that I let her drive as she was by far the expert. My biggest concern was the vows. Julia has an excellent memory (as she has proven over the years as she remembers everything I have every said) and she decided that we would memorize the vows. They were not particularly long, but I have never been one to memorize things. I tend to think on my feet and wing it. I must have said that thing to myself 100 times that day because I was bound and determined not to make a fool of myself.

As expected, Julia whizzed through hers like a hot knife through butter. It was then my turn and I started off strong with,”I, John, take you, Julia, as my loving wife.” It was then that things started spinning and I was glad that I had remembered my name, because I sure couldn’t any longer. Whatever was left of my mind had turned to Jello. I stood there for a second and even heard a chuckle from the crowd as I tried to remember what was next.

I finally gave in and looked at the minister for help. He got me started and I just winged it after that. As I like to mention to Julia and have done so several times in the last 21 years, I forgot to mention the thing about being faithful. It wasn’t until we reviewed the tape of the wedding that this fatal mistake was noted. So far I haven’t taken advantage of this missed paragraph in the contract, but that doesn’t mean I don’t like to tease Julia about it.

Julia, however, has taken her belief and understanding of the vows to another level. When you actually utter the phrase, “in sickness and in health,” you never really think about the sickness part. Most people are just thinking about where they are going on their honeymoon when they get to this part.

Needless to say, the last eight months have opened up even my eyes to what those vows mean. It’s easy to stay with someone when everything is balloons and butterflies, but it is an altogether different story when you find out that your spouse is ill. That is when you really find out how much someone is really committed to the contract.

Not that I was surprised, but there wasn’t a thing that I lacked when I needed it. Julia was everything to me when I needed her. It was only through her love and devotion that I have been able to get through this. This is when you know you have someone special. Little did I know that the cute little thing behind the desk would become my everything.

September 3, 2009 Jason

There are only so many dates in your life that ring with importance. Certainly, the day you are born, married and die rank right up there. Only problem is that for two of them, you probably don’t even know what is going on and the other flies by so fast, it becomes a blur. Then there are the other days that you never forget.

It was sixteen years ago today that my youngest was born. Usually your second child’s day of birth pales in comparison to your first just because the first is not only scary, but exciting at the same time. You tend to remember every detail because your senses are so heightened. However, that was not to be the case with Jason. He has never been content with being second best and the day of his birth was no different.

First of all, he was supposed to be a girl. At least that was what the book that I bought guaranteed. After Justin was born, we were pretty sure that we were only going to have one more and to give Julia an equal voting chance in the house, we agreed that a girl would be the best option. Even though we followed all of the rules, Jason appeared. The funny thing was that at the end of the last chapter, the book offered to send back the cost of the book if you didn’t get the boy or girl that you had wanted. I guess they didn’t have a boy/girl exchange program.

Julia’s mother had three children and each one of her labors was much quicker. When she had her third, John (who if you remember sent me Graeter’s ice cream when I first got home from the hospital), she barely got in the hospital when he was delivered. Since Justin came fairly quickly, I was scared to death that I would have to pull the care over on the way to the hospital and deliver Jason in the back seat of the Hyundai.

As a result, every time that Julia burped after she got close to the delivery date, we went to the hospital. Finally on the third trip, we got it right. However, the delivery wasn’t going to be an easy one. Although it went fairly quickly, the umbilical cord was wrapped around Jason’s neck. As the delivery progressed, Julia’s blood pressure dropped and Jason’s heartbeat fell right along with it.

All of a sudden, there are 7 people in the room and they have Julia on her hands and knees trying to get things in a more favorable position. Of course, I am having a cerebral hemorrhage and Julia is as cool as a cucumber. They finally got things back in order and Jason was born without a hitch.

I think the lack of oxygen made Jason as stubborn as a mule. (Certainly didn’t get that from me.) For the first two years, he refused to talk. I never heard so many “aaaaaaa’s” and “ooooooo’s” in my entire life. It seemed like the only word he knew was “no.” I don’t even want to try to count the money we spent on doctors and tests making sure he could hear.

But eventually, he did start talking and we couldn’t shut him up. However, I think he has now gone back to his old ways and he only knows how to text. He does talk to us once in a while, but it is usually about whatever sport he is playing or something he has seen on MTV or VH1. For those of you not old enough to remember, they actually used to show music videos on those two networks. Now it is just inane reality TV.

Yet, I really have no reason to complain. He cleans his room at least once per month and keeps the wear and tear on the carpet in his room down since he keeps all of his clothes on the floor. He stays out of trouble and actually gets an A or two now and then in school. Oh, and don’t forget, he did offer me one of his kidneys when he thought that would save my life. It is impossible to truly convey your innermost feelings for another person. You can say all of the right words, but words rarely give the full meaning. You hope your actions express what you want to say. I hope that years from now when I am long gone, Jason understands the love that a father has for a son. I don’t have a kidney to give him, but love, I have plenty of.

I guess we have done a few things right over the last 16 years. Now if he can just not break a leg in his first high school football game tonight.

August 28, 2009 Life as a Bachelor

For the last week and a half the boys and I have lived as only bachelors should. We haven’t been eating vegetables and will only clean the house the day that Julia arrives home after visiting her mother and the rest of the family. I suppose I should wash the sheets, but that will probably be that last thing on the way to making the house look like humans actually reside there.

Despite not knowing how to find my way around the kitchen, I somehow kept everyone alive without a great deal of weight loss. Of course, we didn’t exactly dine like kings, but I do know how to unfreeze things and throw a pizza in the oven. We actually did have an evening of frozen pot roast, frozen corn and pre-manufactured mashed potatoes from the refrigerated section.

It hasn’t been the cooking that has worn me out, it is the laundry. The day after Julia left, I had the boys bring up their clothes and added to the pile that already existed. That took me four loads. We go through enough towels in two days to do a load and when you add that to the seven or eight towels that the boys had hoarded, I had another two loads to do. Then just two days later, I had another four loads of clothes to do. I swear, they hide dirty clothes for special occasions.

However, it is the endless football washing that is driving me nuts. Before the season, I bought Jason two girdles (for the unfootball people out there, this is a protective pair of tight fitting shorts that hold the leg pads under the football pants) so that we wouldn’t have to do laundry every night. Instead, he has decided to wear the school supplied girdle. With football six days a week, I have had to wash this thing 8 times since Julia left. In addition, Jason no longer wears a white practice jersey. The first string defense wears red for practice. So now I wear red just about every day so I have something to wash with the practice jersey.

Luckily, I have until late in the afternoon on Saturday to get this place inhabitable. Jason has to be at practice at 7:15 in the morning so I have already warned Justin he will be up early to tackle the house cleaning. Too bad I can’t clean like Mr. Clean; lord knows I have the hair style down pat.

August 26, 2009 The Last of the Kennedys

I’m going to go completely off topic tonight. I was going to write about baching it for the last week, but I’ll save that for tomorrow. Earlier today, Ted Kennedy passed away. It was truly the end of an era and I just felt that I needed to say something about it.

Growing up Catholic was a unique experience but there was nothing as exciting as when John Kennedy was elected the first and only Catholic president. My parents were Democrats and I followed in their footsteps. I vaguely remember Kennedy getting elected. I completely missed the Bay of Pigs, but the Cuban Missile Crisis was very real to me. I remember being worried about a potential nuclear war. Our neighbors actually had a fallout shelter built in their basement, the threat was so real. It was during this crisis that Kennedy showed, Cuba, Russia and the rest of the world that the United States could not be bullied.

I remember thinking at one time that there could be 24 consecutive years of Kennedys being president. I, like so many others, know exactly where I was when we heard that John Kennedy was assassinated. When Robert Kennedy ran for president, I was very much in his corner. Watching him being assassinated was another of those memories that will never leave me.

I was so infatuated with the Kennedys that I wrote a fifty page paper my junior year in high school about John Kennedy’s life. We still lived in a world that didn’t pry into the lives of the famous as we do today. There was no talk of John and Bobby sleeping with every woman in sight. The Kennedys were saints.

That all changed the night that Mary Jo Kopechne died in a pond on Chappaquiddick Island. From that moment on, Ted Kennedy, the last of the Kennedy brothers, was a changed man. From that point on, he had to fight demons. His life was never the same as he fought alcohol, the Kennedy weakness for women, divorce, a failed presidential run and finally, cancer.

As I grew older, I changed my political views and often disagreed with the views of Ted Kennedy, but I never lost sight of his desire to help his fellow man. Despite his enormous wealth and fame, he was a man for the little guy. He dedicated much of his time in the Senate to fight for civil rights, better health care and the rescue of the impoverished.

In the end, he was no different that the rest of us. He had to fight for his life against a disease that is relentless. Despite his gallant efforts, he eventually lost to the demon called cancer. It plays no favorites. It strikes young and old, rich and poor. Some day it will be beaten, just not today.

The United States and the rest of the world is very different because of the Kennedys. They were driven men. They enjoyed the power, but they also made it there life work to serve others. Despite their flaws, they made a difference, something that we should all strive to do while we can. Make a difference with the gifts God has given you.

August 19, 2009 Fourth Quarter

I have officially entered the last quarter of my 100 day experience. Because I am such a huge baseball fan and lover of the underdog (Cincinnati Reds), I am going to put this experience into baseball terms verses football despite the fourth quarter reference.

My season started off in a real slump—Fourteen days in the hospital in which I lost 15 pounds. I came home and proceeded to want to throw up anytime I tried to take a pill for the next few weeks. This is not the way to start a season. Sometimes you start off so badly that no matter what you do later, you still end up out of the playoffs. I didn’t like starting the year in the minors, but hoped for a promotion to the majors later in the season.

As the weather started to warm up, I started to feel better---Like a lot of good teams, it just took me a while to start playing up to my abilities. We had about 15 consecutive days of over 110 degrees and it actually felt good to get outside a little bit. I started to increase my activity and despite feeling a little tired, I started feeling stronger. I was ready for the call up to the majors.

As the trading deadline approached, I felt I needed to strengthen my bullpen---It was getting close to my big tests early in August and I felt it was time to really start getting my body in better shape. At the end of July, I started walking in the pool. I traded time on the couch for time in the pool. This was a deadline deal that helped me get back in the pennant race.

My big road trip to play the first place team---On August 6th, I met with Dr. Mikhael. He is the guy in first place and I am ready to meet with him to see just how good I really am. Just like when the second place team visits the first place team for a three game series to see who was the best. I won 2 out of 3 games (tests) on that road trip. I held my own and kept myself in position to make a run at the end of the season.

Bad feet, sore legs and still a bit weak would put some on the disabled list, but I said pour it on---The good thing about the trip to the doctor was that he let me go back to work. I felt much better than I had just one month earlier, so I decided to go back to work despite the occasional limp. I’ve now worked seven days and am ecstatic. It feels good to be back in the starting rotation after spending time in the bullpen. I had to skip a start on Friday, but came back strong on Monday.

Stretch drive---We are now down to the last few days of the season and I feel better than ever. I have been able to stretch work out to four hours on some days. Despite nagging foot problems, I am ready for the big final series in the battle for first place. It is still 25 days away, but I have a good fastball to go along with my curveball so I feel like I can take anything the doctor has to throw at me. Like all major leaguers, I will have to take a urine test before I am cleared to play full time. Instead of the $20 million players who have to provide just a small cup worth, I will have to provide a jug of the stuff. That is what happens when you start the season in the minors.

August 10, 2009 Hi Ho, Hi Ho

After being away for over two months, I actually found my way back to work today. However, the equipment in my office wasn’t so happy to see me. Shortly before I left for my extended vacation, I was given a nice new HP laptop. It is small and light, but it has given me a few fits in its lifetime. For whatever reason, it just doesn’t like me working from home. There were times that it would take over ten minutes to come up. If I wanted to utilize Word, it would take another five minutes. No problems at work, just home.

I digress. It seems that the monitor in my office decided to go along with the laptop and its goal of me not doing any work and it decided not to come up this morning. So I thought a quick call to the Help Desk and I would be golden. However, my phone was as dead as a doornail. (This is one of those sayings I learned from my dad and done my best to hand it down to my sons, but as in most things, they have refused to pick it up.) So my cell phone actually worked and I got my call into the Help Desk. Helpful as always, they solved the problem and I was on my way.

After all of this excitement, I decided to have a short meeting with my staff to go over some items that had been nagging at me for some time. Nothing that they were doing incorrectly, just things that we needed to fix. Boy, it felt good to be back in my office, feeling some sense of worth.

However, after about two hours and thirty minutes, I hit a wall. It was time to head home. Not a bad day’s work, 150 minutes. Just enough time to get home and take a nap. I promised my doctor that I would be good and take it easy. Hopefully, that wall is a little further away tomorrow.

August 6, 2009 Close But No Cigar

I did everything that I could but I couldn’t get Dr. Mikhael to say the “R” word. However, I am inching closer. There are three things that they will check before they will label me as in remission and I have to wait another five weeks before they will do the last. The other two are looking pretty good, though.

As I have stated before in this blog, I have watched a million hospital and doctor shows. I feel that for a layman, I can understand a decent amount of what they talk about. Yet, I have managed to get lost in some of the technical lingo with respect to multiple myeloma. This, will, however, make it a little easier for those of you that have not watched nearly as many doctor shows as I have.

MM causes the creation of protein in the bone marrow and bloodstream that just don’t belong. Some of these would be referred to as long chain and others as short chain. Not all Myeloma sufferers are lucky enough to have both. Of course, I am. I didn’t know this, but my first 16 chemo treatments completely wiped out the long chains. Take these numbers as relative, so don’t worry about what unit they represent. Before the chemo, I was at 0.4 and now I am at 0.0 which means that that portion of the cancer is gone at this time.

The short chains are a little tougher. Before my first chemo, these were at 65. After the 16 sessions, it was down to 12. After not taking the chemo for five weeks, this had jumped back up to 40. I didn’t know these exact numbers, but I knew there had been some significant growth. This is what was causing my recent sleep deprived nights. If it grew that fast in five weeks what would it do in nine?

The good news is that it has dropped to 8. A normal person (and I’m not sure how many of you are normal if you are reading this) can be up to about 2.3. The fact that it is that close to normal is great. However, they like to see at least a 90% drop, so I have just a little bit of work to do and Dr. Mikhael stated that it was possible that there could be some additional improvement in the next month.

The last test that I will have to pass is the 24 hour urine collection. This will check to see how much protein there is in mine over a 24 hour period. A healthy person should have none. Before treatment, I had over a full gram in my first test. When I entered the hospital for the transplant, it had dropped to 0.365 grams. It needs to be under 0.1 for the “R” word to be utilized. Again, Dr. Mikhael is very confident that I will be there.

The other big news is that I get to go back to work on a limited basis. So much for sitting around the house in my underwear, unshowered. There always seems to be a price to pay with progress.

August 4, 2009 Two Months Later

It has now been two months since my transplant. Yet, the next couple of days are probably more important than any of the preceding ones. I have a 4 PM appointment to get my blood taken for the biggest test of my life. Much like when I was in college, I have spent little or no time studying for this one. Hopefully, I’ll do better than I did in college.

I would be a liar if I didn’t admit that I have spent a great deal of time thinking and worrying about this test. Unlike the SAT that we all took in high school, there is no real opportunity to retake it and hope for better results. When we met with the doctor four weeks ago, he was very confident that everything was going well and that I had an 80% chance of getting to at least a 90% remission level.

Because there is nothing that can completely wipe out the disease, 90% remission isn’t all that bad. The hope is that in any case, the cancer is knocked on its butt for a while and takes its time getting back to full strength.

If all goes well and I reach this level, I will then take occasional blood tests to check the progress. I am unaware of any medication that I would take while in remission. That is of course other than the regimen of medications that I am taking now to help my immune system. I still have roughly 40 days to go with that.

If things haven’t gone as expected, there are a number of options available. The bad thing about this disease is that it is not curable; the good thing is that the researchers have come up with a number of options if a transplant does not take. In addition, there are a number of clinicals going on that I could also become a part of.

Of course, there is the possibility of another transplant. The stem cells are already harvested, so we could pull this one off rather quickly if it made sense. The doctor would have to do some real convincing on that one. My biggest question would be, “If it didn’t work the first time, why would it work the second time?”

If I am in remission, I will attempt to convince the doctor that I should go back to work on a limited basis (this normally isn’t done until day 100). Never thought I’d be dying (probably poor choice of words) to go back to work, but I am. It’s not just the getting back to normal, but it is hard to feel a real sense of worth when your biggest job of the day is to take your pills and drink 64 ounces of water.

My appointment is at 11:30 on Thursday. I promise that I will get something up on the blog by evening, good or bad. I appreciate all of you accompanying me on this ride. Hopefully, we’ll be able to take our hands off of the roller coaster restraining bar and raise them skyward as we enjoy the ride down that first big hill.

July 31, 2009 Trading Deadline

Today was the baseball trading deadline and I didn’t get traded. I think my value dropped after I was spotted in my pool today.

I have always prided myself on looking and acting a little younger than I really am. I think it may just be that I am immature, but it certainly helps when you are trying to act younger.

However, I find that I am not as young as I would like to be anymore. When in the car with either of the boys, there is always a struggle as to what music we are going to listen to. I tend toward the ‘70’s and ‘80’s, while the boys tend to move in the direction of noise. I just don’t understand the popularity of the Hip Hop and Rap. I guess that I have gotten sensitive in my elder years, but there are more BLEEPS in this music than music.

To top that, you needed to see me in the pool this morning. I started walking the pool in the morning to get a little exercise. Since my feet hurt, I really can’t walk that much and because of the damage done to my bones by the myeloma, I’m not supposed to lift much. As a result, what was a spongy body to begin with has become sludge. The pool gives me an opportunity to walk without any foot problems and makes me use my arms to get through the five feet area.

However, because I have pretty much stayed out of the sun for months because of the sun sensitivity the chemo and other medications have caused, I was pretty much white as snow. That was until I started this pool walking. Since I spend almost an hour each day in the pool, I have started to tan, or should I say red. Because of that, I pulled out a hat and wore it in the pool on Thursday.

I have never been much of a hat guy. When I coached on Jason’s baseball teams over the years, I was always the guy that didn’t wear a hat. I also was the preppy dressed (dress shorts and collared shirt) guy, but that is a whole ‘nuther story. However, with the chrome dome that I now possess (by the way, when is this stuff going to grow back), I needed to do some protection. It just so happens that Jason returned from Columbus with a hat from Graeter’s, a present from my in-laws.

I tried it on the other day and kind of liked it, but one of Justin’s buddies saw it and referred to it as “an old man’s” hat. It has kind of a flatter top that a baseball hat, but I thought it was just fine.

The head wasn’t the only thing that was getting red, so I thought it would be a good idea to throw on a t-shirt this morning. I have never worn a t-shirt in a pool in my life, but in the secrecy of my back yard, I thought, “what the heck.” So now you add the “old man’s” hat to the mix and with these longer swimming suits, I am now covered almost from head to toe looking every bit of 75.

I may not have looked like an Olympic swimmer, but I managed to make 100 trips from one side of the pool to the other. You notice, there is no accompanying picture with this blog. I don’t want to blow my standing in the community just yet!

July 28, 2009 - Spending Spree

Yesterday I mentioned that I’m still not 100%, but every week I seem to get a little better. That was until I went shoe shopping the other day.

Because of the neuropathy (damage to the nerves in hands or feet caused by chemotherapy) in both of my feet, I have run into some discomfort when I walk much. As a result, I have stopped my morning walks. So Julia suggested that we go to the Walking Store.

This is exactly the kind of store that I have passed up my whole life. Any place that they not only measure the length and width of your foot but they also measure your arch is a little scary to me. I’m the guy that buys the same shoe over and over again at Kohl’s whenever it goes on sale. I buy one pair of black and one pair of brown and I usually can get them for about $39.95. When I buy gym shoes (not sure they call them that any more) I get whatever is cheap. Lord knows I would really hurt something if I tried anything athletic, so getting that little better traction really isn’t going to make a difference.

My goal was to just get one pair of shoes that I could survive in until this little setback goes away. From my exhaustive internet search (one article), this may take from three to five months after chemo. I knew this wasn’t Kohl’s so no multiple buys for me.

By the time I got out of there I not only bought two pairs of shoes and flip flops, I also bought an insert that would help my arch and four pairs of white half socks. The shoes and flip flops were all on sale so I thought I’d be able to survive the encounter and then the guy tells me it is $245. I immediately thought he hit an extra key or two when he put in one of the shoes. I don’t spend $245 on shoes and socks in a year. No need to continue to worry about cancer any longer, I thought that I would have a heart attack.

I come to find out the socks are $11 each. He said that they were a special blend and would last two years unlike other socks that only last six months. Six months? I still have socks that I wore when Justin was born. The insert was $59. That is as much as I have ever paid for a pair of shoes in my life. When I got home I had to lie down.

So much for shopping. I’m staying home for the next month just to recover.

July 27, 2009 Half Way Home

When I started talking to Dr. Mikhael about a stem cell transplant what seems like eons ago, he talked about things getting back to normal after 100 days. It seemed like a long time when he threw out that number. It seemed like an even longer amount of time when I told my boss at the time, Kevin Adams. Luckily, he completely understood and told me not to worry about it. Isagenix wanted me for the long haul and just to take care of myself.

Today is officially Day 53. It seems like Day 153. This timetable is moving as slow as the condemned man as he walks to the gallows. We all have days where we say to ourselves, “Boy I don’t want to go to work today.” I start off every one of my days with “Boy, I wish I could go to work today.”

It’s not just not being able to go to work that is driving me nuts, it’s little things like no fast food. Julia gives me grief for this, but I would give about anything to be able to eat a Whopper right now. I haven’t had a salad since I went into the hospital. I’ve gone to two movies, but I go at off hours to movies that have been out for a while and then have to sit away from any other humans.

This is all because my immune system is still not where it should be and day 100 is the magic cutoff. Until then, I drive by Arby’s and think about how good one of their roast beef sandwiches would taste. Boy, would an extra crispy breast from KFC hit home. What is really scary is that Taco Bell even sounds good.

I’m like the woman with straight hair that wants curly hair and vice versa. We all want what we can’t or don’t have. Of course, I would like to have any hair at this juncture.

I guess that if all I have to complain about is that I haven’t had a Chalupa for a while, life is pretty good. I’m still not 100%, but every week I seem to get a little better.

July 23, 2009 Parenthood

It was six months ago today that my life was turned upside down and I’m not talking about my mortgage. At about 11 AM, I talked to my primary care physician who I had just met the day before. He informed me that my blood work had come back with several problems. Not only were my kidneys failing, I could have a heart attack at any time. All of a sudden, my many mortgages didn’t mean a whole lot.

By the end of the day, I was in the hospital wondering what was to become of my life. Just four days later, I pretty much knew I had cancer. I lot of things went through my mind that night, but the one that kept circling around was that my job as a parent wasn’t done and I really needed to finish that.

Like my parents, I did not become a parent until my late thirties, 38 to be exact. In my parents’ case, it wasn’t because they didn’t want to, they just couldn’t. Then after 18 years of marriage, I was born. My mother would live the next 22 years of her life thinking I was perfect. (I know my cousins reading this are getting a kick out of that statement.) I wasn’t perfect, but I think my parents did a good job of teaching me the right things.

The reason that I waited until I was 38 was not because I didn’t want to be a parent, it was because I just couldn’t find the right person to complete the circle. I married early, found out that it wasn’t right and became scared to death to become a two time loser. It wasn’t until I met Julia that that fear subsided. We both wanted children, so it was just a matter of time.

Although I knew I wanted to become a parent, I didn’t know the first thing about being a parent. I had no siblings and virtually all of my cousins were older than me. I had to learn on the fly. We bought and read some books, but in my opinion there hasn’t been a book written that can really prepare you for what is to come.

I remember bringing Justin home and being scared to death. It wasn’t long after that in doing my finger nail cutting job, I took off as much finger as I did nail. (Not to cheat Jason, I did the same thing to him shortly after we brought him home.) I was a work in process. Thank God Julia was around or I would never have gotten through it.

As a parent, you make decisions on a daily basis that may or may not have an impact on your children’s lives. In truth, you never know which ones will and which ones won’t, yet you keep on making them. And you have to do this without a guide book. Tough job, but somebody’s got to do it.

Now Justin is 18 and Jason is within a month and a half of being 16 and I think we have done a pretty good job, but I’m just not yet comfortable with the results. It’s like the artist that keeps putting on another stroke of paint on his masterpiece because he just isn’t happy with the way it looks.

Part of my problem is that I actually wonder down to the lower level and look in their rooms. What is it about teenage boys that leaves them with little or no sense of cleanliness. There are times I could walk across either of their rooms without ever touching the carpet because of all of the dirty/clean clothes on the floor. Why isn’t school as important as it was for us? They are both bright kids, but they just don’t seem to want to get that Rhodes Scholarship. Get a job? How could I be so insensitive?

These are the things that I see every day. They sometimes make me forget all of the compliments that we receive about the boys. The fact that we hear that they are such great kids from people all of the time seems to escape me when I look in their room. I somehow forget that Jason offered me one of his kidneys when he thought it might save my life that first day in the hospital. Or the fact that Justin received a full tuition scholarship to any of the community colleges in the Phoenix area? How do I miss these things?

When you have a child, it changes your life forever. All of a sudden, you are not the center of the universe. All of a sudden, you have another job to perform, one that you cannot take lightly. I’m also sure it is a job you never feel is completed, no matter how good your kids are or what they accomplish. I guess I’ll just keep plugging away.

July 20, 2009 Dayton Flyers

Those of you that know me well know of my love for the University of Dayton and all of their sports teams. For the last nine years or so, I have written for the internet site, UDPride.com. Because of it, I have been able to meet a good number of players, coaches and UD staff. I have yet to meet one I didn’t like.

Because of my writing, I have met a number of UD fans including several that have become good friends, even if we haven’t met in person. The internet has certainly created new and interesting relationships, hasn’t it?

My closest of all of those friends is Paul Nardini. Out of the blue over a decade ago Paul called me from his home in Lima, Ohio. He had read an article that had appeared in the UD Quarterly, looked up my number and gave me a call. We talked on the phone for close to an hour and Paul couldn’t stop complementing me on my handiwork. You have to appreciate someone who can recognize quality work!!!

Paul and I now refer to each other as “brothers”, he being the big brother. We talk on a fairly regular schedule usually about our beloved Flyers. Before moving to Arizona, I was a season ticket holder for UD basketball games, driving 90 minutes each way for over 20 years. As a family, we rarely missed a game, even when they only won three games one year. Justin even had a cheerleader “girlfriend” when he was almost three.

Now that I have left, the Flyers are getting good, being rated as a preseason top 20 team. This hasn’t happened with any regularity since the 1950’s. In addition, they have the potential of having a top 10 recruiting class for next year.

This brings me to a portion of the conversation that Paul and I had yesterday. We talked about the Flyers as we always do, but we also talked a good deal about what I have been going through. Toward the end of the conversation, Paul said something to the effect that he has been worried that I might not live long enough to see the Flyers reach the Final Four.

This might be startling to some, but not to me. This crazy thought had already passed through my head. I have always loved the underdog and now my underdog Flyers were heading to territory I have never seen before and I have cancer. Something is wrong with this picture.

Don’t worry; I’m not jumping off the deep end. I still believe that I will beat this thing. Yet, this is a great example of the kind of thing that runs through your head once you find out that you are probably not going to live forever. Another thought that I have had was if God assured me that I had exactly ten more years, would I take Him up on that, or would I roll the dice to see if I could get more. I turned 56 this January and at the time, I had planned on delaying my pension from Abbott until I turned 65. I turned in the paperwork a couple weeks ago to get it started. Funny how things change when you have a little more knowledge.

I’m just glad I had my physical when I did and found out I was sick. Who knows where I would be today if I hadn’t taken the time to get the physical. My boss, Scott Luther, completed his physical the other day and gave me a little credit for getting him going to get it done. That put a smile on my face. I believe that there are close to 100 people that read this blog and I have been writing it for over six months. I sincerely doubt that 50 of you have had a physical in that period of time. Stop putting it off. Please.

PS I’m feeling better every day!

July 16, 2009 The Cost of Chemotherapy

When you talk about chemotherapy, you are talking about numerous drugs used to attack cancer. Chemo is used to attack cancer at numerous sites verses radiation which is used to attack cancer at specific locations.

Some of these drugs are very specific and tend to attack only the cancer itself. A perfect example of this would be Velcade which is the first chemotherapy that I received. Other than being tired the first week, I had very few side effects, constipation being the primary culprit. If you are a steady reader of this blog, I’m sure you remember my difficulties there, certainly something I won’t forget anytime soon.

Other drugs can bring along with them several side effects that I have also mentioned here. Some of those side effects can be minimized by the amount of the drug you receive and other drugs utilized to reduce the discomfort. I’m afraid that the chemotherapy that I received in the hospital was one of those that brought several friends with it to the dance.

Part of the reason that I had as many side effects as I had was because of the amount of Melphalan that I received. In normal use, you receive one dose and then wait two to four weeks for round two. Now sure how many doses I received, but when I receive the bill, it was for eight units. There was some discussion if I would receive all eight or just four because of my kidney situation. However, because of the rest of my generally good health and improved kidney function, the team felt that the normal eight for this procedure would be appropriate.

It has now been forty four days since I received the Melphalan. Although I feel much better than before, there are some lingering effects. The good thing is that I have saved $15 on a haircut. Since Justin cut it when I came home, there has been no growth what-so-ever. In fact, I now only need to shave every couple of days and even that only takes about 15 seconds. I grew more peach fuzz on my upper lip when I was in the seventh grade.

My stomach is much better, but I still suffer from some indigestion. This is from a guy that never, ever had any stomach issues. Luckily, it hasn’t slowed down my eating, just made me a little more conservative on what I eat.

I am really working on my stamina with my 25 minute walk (1.3 miles) every morning. It is helping, but I still tire too easily for my taste. The bottom of my feet still suffer from numbness, especially my left foot. I think it is getting better, but too slow to be sure.

Not sure if this is related, but I have soreness in my jaw, like I went to the dentist and he had me open my mouth too wide. I have to take my time when eating a sandwich, but other than that no big deal.

Of course, I can’t leave the blog titled “The Cost of Chemotherapy” without talking about the bill. In 1976, I bought my first house for $40,500. A long time ago for some of you young folks, but, yes, they did have indoor toilets back then. As a comparison, the one hour of Melphalan that I received cost $48,000. This is, of course, before the negotiated rate that the insurance company receives, but you have to wonder what a drug dealer could do with this stuff. Not sure I could afford to become addicted for more than one reason.

July 14, 2009 Little Ben Brewer

Since I started writing this blog, I have spent the vast majority of the time talking about me. For once, I’m going to take some time to talk about someone else, someone that I have never met. His dad and Julia worked together at CompuServe a few years ago and have remained in contact.

Ben Brewer was like most kids that are two and a half years old. He enjoyed life more than any of us do because at 2 ½ he had no real worries. He got up in the morning, played his little heart out, had a few meals and went to bed. There is probably no better time in our lives; everything is a wonder as we learn volumes every day.

Sadly, Ben and his parents would soon find that life can be a ferocious roller coaster that can rocket from unbelievable highs to terrific lows. Some seemingly minor annoyances turned into a horrific reality. Ben was diagnosed with Neuroblastoma, Stage IV.

Neuroblastoma is a malignant (cancerous) tumor that develops from nerve tissue. It occurs in infants and children and can occur in many areas of the body. It develops from the tissues that form the sympathetic nervous system (the part of the nervous system that controls body functions, such as heart rate and blood pressure, digestion, and levels of certain hormones). Ben’s started with what appeared to be the sniffles, a fever and with pain in his hip that impacted his walking.

If diagnosed in infants under the age of one, the prognosis can be much more favorable. In Ben’s case, his chance of survival when diagnosed was just 10%-40%. However, seventeen months after Ben was admitted to Columbus’ Children’s Hospital, he was declared NED (no evidence of disease).

Many have said that I have been brave and strong through my ordeal with cancer, but if you compare mine with what Ben has gone through, you would have considered mine a vacation in Maui. Through it all, he has been strong and mature beyond his years.

Sadly, now that Ben has recently turned eight years old the disease has resurfaced. Like most cancers, when it comes back, it comes back more determined than ever. Ben’s road to survival will be even more harsh than what he has already had to undergo.

Please keep Ben in your prayers as he is the real hero here. Visit his blog site as he is now uploading videos instead of relying on his mom and dad for updates. You will be amazed at his strength.

July 12, 2009 An Eye Opener at Costco

Since I came home almost 4 weeks ago, I have not been very adventuresome. Due to the restrictions placed on me I am to avoid crowed places. Doesn’t mean I can’t go out, it just means I should avoid people contact. However, I finally succumbed to cabin fever last Sunday. By the end of the day, I begged Julia to go with me someplace, anyplace. We agreed that Costco would work since we needed to pick up a few things.

I had been feeling better for several days so I was pretty sure that I would be able to attack the Mecca of buying way more than you need just because it looks cheap. This wasn’t going to be a full fledge, let’s see if we can fill up the cart trip, just one to let me see the real world. As a result, I felt pretty confident that this would be a piece of cake. Wrong again.

We were there no more than 30 minutes and I had to stop twice and sit down. I have now officially joined the Octogenarians of the world. I guess my many trips to the bathroom over the previous weeks had not kept me in Lance Armstrong type shape. This was my wake-up call.

Starting the next morning, I took a 20 minute walk around the neighborhood. By the time I was done, I was ringing wet and ready for a nap. However, it at least started me on the way back. This morning I stretched that to 25 minutes and wasn’t quite as whipped. Somehow, I have got to get back to feeling like myself. Getting closer, but still a long way to go.

On Wednesday, Julia and I made the trek up to the Mayo Clinic to see Dr. Mikhael. This was my first visit with him since rounds in the hospital. He continues to be very pleased with my progress. As a result, he dropped the normal two week follow-up for one in four weeks. Prior to that visit, I will have some extensive blood work done that will give a good indication if I am in some form of remission or not.

During this visit, I asked him to delve a little deeper into what is considered remission. Since there is no real cure for this blessed disease, all you can hope for is the ability to knock it down a step or two and then hang on for dear life while it tries to gain the upper hand. With were I am and what I have shown so far, Dr. Mikhael believes that I have an 80% chance to get to at least a 90% remission. Not sure what that means, but I’m not going to be satisfied with 90%. There are some levels around 100% that are my goal. Obviously the higher the number, the greater the likelihood of a longer time in remission. Trust me, I am in no hurry to go through this again anytime soon.

I’m hoping to get out a see a movie this week and will continue to follow both of the boys with their baseball exploits. Justin has a couple more weeks of baseball while Jason will play with the Angels in the State Tournament. I think they have a chance, so that could be fun.

Over the last few weeks, I have had a number of calls from friends just checking in to see how I have been doing and those have been great. It’s nice to hear from people that I have been friends with for years and a few have threatened to come out and visit. We certainly have room, so don’t let the 115 degree temperature scare you off.

The one thing that has been difficult has my inability to pick up the phone and call Terry. It was always nice to give each other reassurances that we would both beat cancer. I miss that. I still well up when I think much about it, but there just isn’t anything I can do but rely on others to try to take his place. I know it will get better.

July 5, 2009 OMG!

Yes, oh my God! I had two surprises over the last few days, one good and one, well; I’ll let you decide on the second one.

Wednesday was much like the days have been lately, not too exciting. Then the now familiar knock on the door late in the afternoon. All of a sudden my day had become exciting. Once again, I received a package from Greater’s. This time it was 12 different flavors. I about fell over. We had to throw away some vegetables from the freezer (another good thing.) Jim Sibert, the only person that I knew from Abbott longer than Terry had decided to make my day.

Jim was my first boss at Abbott and has always kidded me about being “ugly.” Of course, we all know that is nonsensical but that is how I knew who sent the gift. No signature, just some reference to me being ugly. With friends like this…..

My surprise on Thursday was not quite as much fun, but certainly as exciting. Thursday was my big day for getting the port out. For five weeks I had been the bionic man, but I was ready to live without this swell device in my jugular vein. I had fasted all morning like I had been reminded the previous day in a telephone call. The only drawback to getting this thing out was that I would have to get another IV, probably in my hand. Of course, they would have to put me out just like they did when they put it in. Or so I thought.

My blood draw at 9:30 went quickly so I was able to get down to the out patient area early. After getting checked in, I was ready to get this over with. If you remember, when they put it in I was a nervous wreck. Since I knew what was coming this time, I was as calm as could be, just wanting to get it done.

They called my name and I was led back to the same, pre-op area that I had gone to the first time. As I was led into the little curtained room, the nurse said that Lisa would be in shortly to take the port out. At that point, I realized that someone was missing an important step. What happen to the going to sleep? All of a sudden, my not so nervous feeling turned to panic.

They could not be serious. They were going to have me in the same room as the removal process. I was much happier when I was going to be sleeping when this took place. Soon Lisa came in with an assortment of tools. I mentioned in a quivering voice, “Gee, I thought I would be put out for this.”

She assured me that this was no big deal and it would be done in a matter of minutes. Easy for her to say. It wasn’t her jugular vein involved. She was kind enough to offer me a slight sedative in the form of a pill. I wasn’t going to do it, but if it would just make me a little less aware, I was all for it. Of course, it was worthless. I was just as awake as if I was watching a ball game.

After several shots of a numbing agent in the area affected, she started pulling on the port. In my mind it took several hours, but in all likelihood she was done in under 60 seconds. Somehow, I had survived the procedure. Ten minutes later I was on my feet and we were walking out the door.

June 30, 2009 More Good News

One thing that I have found during this journey is that I have completely lost track of time. This doesn’t mean that I can’t tell what hour it is. What it means is that I really have no idea what day or date it is. Without the structure of school or work, it is difficult to separate one day from the other. Today marks two weeks that I have been home. It seems like it has been longer, yet it seems like a much shorter time that I actually spent in the hospital. That hospital stay seemed more like two years.

Today is officially day +26, or 26 days since I received my transplant. The magic number for most is 30 days. After 30 days, most start feeling more normal. It is during that time that your blood gets more normal and you lose the other not so pleasant side effects. In some ways, I feel that I am there. My blood work came back great yesterday as both my platelets and white blood cells are back to the middle of the normal range. My red cells continue to improve and my hemoglobin will probably be back to normal within the next month.

In addition, they will be removing my port on Thursday, four days early. As much as I was nervous about having it put in, I’m just that excited about having it taken out. I know what is coming so, no big deal. It will be nice to take a shower and not tape up. It will also be nice to just stand in the shower and let the water run over what used to be my hair.
Speaking of which, I still have some hair left. We cut it off 10 days ago because it was everywhere. I still have fuzz but what is bothering me is the fact that some has continued to fall out. My problem is that it seems like the only hair that is falling out is what dark hair I had left. As a result, I just have white fuzz left. So much for looking young.