August 27, 2011 Wonderful

I have touched on this topic in the past, but now is as good of a time as any to dive into it a little bit deeper. Life is filled with ups and downs. What we make of life is how we deal with that inconsistency and how we work to minimize the damage caused by those dips. There hasn’t been a successful person that didn’t have to deal with some type of adversity in life. They are successful because they were able to get past that.

When you are dealing with disease, you are often confronted with those ups and downs on almost a continual basis. It becomes very easy to become myopic and only see the latest information and become fixated on the potential outcome. Even inside of that vortex, there is the likelihood that bad news is greeted with certainty and good news with a significant level of skepticism. You really want the positive to be true, but it is very easy to keep your level of excitement at a minimum because of the potential for an even greater letdown with the next set of tests.

This is where your own beliefs and attitude need to become even more important. It is easy to get depressed when things aren’t going your way and it can be in anything in your life. It can be the new job that just doesn’t seem to be going as well as you had anticipated or the new boy friend that doesn’t seem to be paying as much attention or the fact that the stock market has taken another dip. Don’t even get me started on how the Reds are doing this year. If you let those things get in the way of the positives that are still there, there is the possibility of making things even worse than they really are. It is here where faith in God or your friends or even yourself is so important.

There are days where I just don’t feel quite right and some days just flat out poor. Part of that might be the cancer or the medication or the fact that I’m just plain old. Yet, when someone asks me how I am doing, I almost always tell them that I am doing great or wonderful or some other positive descriptor. I actually do this for a number of reasons but the most important of which is to remind myself that I have to stay positive. More than anything else, I do what I can to battle to downs with a little bit of my own pep talk which is something that I have learned to make part of my everyday life (away from cancer.)

I hate to admit this but in years gone by I have allowed some really idiotic things to make my mood less than positive. Probably the worst of these is my love for the University of Dayton Flyers. Over the years there have been many Saturday nights that I would drive back from Dayton completely disgusted with the outcome of a basketball game. I would then allow it to creep into my Sunday and even my Monday. In retrospect, I had to be nuts. It was a stupid basketball game! As stupid as I was, I’m sure that I wasn’t alone on those evenings and my guess is that there is something in your life that is just as trivial that depresses you far more than it should.

The thing that I have learned over the course of the last two and a half years is that the little things just should not do that to you. Use the little things to perk you up, not drive you in the other direction. Even if it is a bigger thing, one has to learn to move it from your normal thought process, because that depression or worry will never make you better or make you happy. All of this is certainly easier said than done, but unless you work at it, there is no chance for it to happen.

Since the beginning of January, my blood tests have continued to deteriorate month after month. It was easy to read the handwriting on the wall and see that chemo was on the horizon. It was hard dealing with that, at times, but I still did my best to stay “wonderful.” Now the chemo is here and I’m still saying “wonderful.” But now I have a better reason to say that because after my first round of chemo, the level of cancer in my blood dropped from 20.8 to 16.9 with normal being below 2.0.

Dr. Mikhael was very pleased with the result as is shows a nice slow controlled drop which is preferable to a quick drop that often signifies a stronger, faster growing cancer. In addition, the kidneys held their own and there was no significant drop in my red and white blood cells which often happens with Revlimid. So far, so good, with hope for another drop next month. Now when someone asks me how I am doing, saying “wonderful” comes just a little easier.

August 15, 2011 -- Side Effects

Before this goes too far, I have to admit up front that I am a TVaholic. I understand that this is not acceptable to many people, but it is who I am. I enjoy TV and I like to go to movies. Maybe it is just an escape from normal life, but it is what I like to do.

That being said, I have seen more than a few commercials in my life and have really noticed a change in the last 10 years. Ten years ago, there were not too many commercials for prescription drugs. They were what your doctor prescribed and as a patient, you just left it up to them to decide what was best. The world has changed and we are continually bombarded with commercials for all of these new and exciting drugs, everything from drugs to help you in the bedroom to drugs that allow you to eat all the wrong foods and still have good cholesterol.

The other thing that you can’t help but notice is all of the potential side effects. After they read the list of potential side effects, it is a miracle that anyone takes anything. My favorite is the anti-depression drug that may cause you to have thoughts of suicide. Heck, all I have to do is look at my tax bill every year and I have thoughts of suicide.

The problem with these side effects is that they come from clinical trials that want to know everything that happens to you when you are participating in the clinical and they consider anything abnormal as a side effect. Yesterday is a perfect example of what would have been a side effect if I was actually participating in the clinical that had been discussed several months ago.

After running a load of towels through the washer and dryer, I decided to do some of my husband duties and fold the towels. There were a few too many bath towels to put on our towel shelf, so I laid two towels on the tub. All I did was bend my back about 30 degrees and I felt a little pop in my back and instant pain. I managed to mess up my back by laying down two towels that didn’t even weigh a pound. The fact that I have had a history of pack pain and I seem to be falling apart would have nothing to do with the requirements of the clinical. It would have to be reported.

So today, I took a look at the potential side effects of Revlimid and found that there were potentially 242 side effects. Yes, you read that right, 242. There was everything they from heart attacks to hiccups. Just about everything that could go wrong was on there. Right in the middle was a listing for back pain. Obviously, my back pain had been caused by the drug. It seems to me that because of the way the clinicals are run, some of the information becomes worthless and you have to look at everything with a jaundiced eye.

In my particular case, I have run into some side effects that I would prefer to avoid. The first one that hit took about 3 days to rear its ugly head. Before I went to bed that night, I noticed that my scalp had become itchy. I didn’t think much of it until the next day rolled around and it had become worse. Three days after it started, I looked like a dog with flees, scratching at every opportunity. Luckily, it started toning down the next day and eventually went away.

The next side effect was a continual cramping of muscles. This could happen at any time and just about anywhere on my body. This started about two weeks in and seems to have settled down to where I only occasionally get a cramp.

However, the last side effect that I have noticed is the one that is going to drive me crazy if it doesn’t go away. I have a further confession to make. I am not only a TVaholic but also a foodaholic. It’s not that I eat a lot of different things or even things that are good for me, but I do like food, probably to a fault. I am now finding that food is losing its flavor, especially salt and other spices. I eat spicy food and think it is boring, which has never been the case. I have already found that adding a shake or two of the salt shaker is worthless. I can live with this, but what a bummer!

On a related front, water suddenly tastes like bleach. Now, I’m not exactly sure what bleach tastes like, but this has got to be it. Since all of this started, I have gone from drinking a lot of tea and soda (pop for you mid-westerners) to drinking almost exclusively water due to my kidney issues. I will typically drink at least 80+ ounces of water each day. This has now become a chore as we search for fixes.

Don’t get me wrong, I will trade all of these inconveniences for a few more years of life. We tend to become spoiled in life and always want things to be perfect. It is only when other things become more important that we are willing to compromise. I have found my reason to compromise. In the end, I needed to lose a few pounds before my 40th high school reunion, anyway. There is always a silver lining, I guess, you just have to look hard enough.