Tuesday, September 22, 2009

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.

Monday, September 14, 2009

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.

Thursday, September 10, 2009

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.

Thursday, September 3, 2009

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.