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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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