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.