The Ride Of A Lifetime

Living day to day with Multiple Myeloma comes with challenges. I’ve spoken many times about how this disease has changed my perspective on things. I look at life a lot differently than I did a few years ago. Having undergone a Stem Cell Transplant has probably skewed my perspective a little more. I tend to take fewer risks, but I when I do decide to risk something…. I go all in. It’s a by product of my life as a Marine, my tendency to fight adversity by confrontation and my views on this disease.

There are a lot of times when I hear people describe their experience with this disease as a rollercoaster ride. It’s an fitting analogy. You start this journey being told that you have the “c” word and that there is no cure. You start moving slowly at first and you start to pick up speed as you start to get higher and higher and before you know it….. you’ve reached the summit and you are in a free fall followed by gut wrenching turns left and right until you don’t think you can handle any more…. The only difference is that with a roller coaster, you see the end coming and you know you are getting off of this ride. With Multiple Myeloma, you just keep going. You suddenly start to move faster and you see that you are getting ready to start that climb again. It never stops. You never get off the ride. It’s a never ending cycle.

Right now I’m at the point where I’m going through the gut wrenching turns while I’m waiting for my laboratory results to finish posting. I’ve been watching them populate over the past 2 days and it’s all been unnerving for me. I haven’t had a normal CBC in so long that I don’t know what it would be like to see one, so that never really bothers me. It is what it is. I look for the cancer specific numbers to post and of course, they don’t post the important one until last. Right now, I know that my cancerous Ig is above normal for the first time since before my transplant. I know that my Kappa Free Light Chain is higher than it was before transplant. Neither results are good. That’s two of the big 3 numbers that I look at. I now need to see what my M-spike is before I can officially start upping the Xanax. There are other numbers I look at, but those are the big 3 that everyone concentrates on. Wait until I have to tell my wife… that’s a whole new level rollercoaster all together.

This is going on while I’m in the process of trying to have a life. Everyone knows that life is at best a series of ups and downs. Jon Bon Jovi once said life is peaks and valleys. That is also an appropriate analogy. Everyone has their high points and their lows while going through life. It’s not always very easy to see if when you are on a peak or in a valley. I’m having a hard time figuring out that part out right now. Am I riding high because treatment is working or am I in a valley so deep that it’s under sea level?

I have my normal day to day activities, a teenager to raise, Christmas to get ready for….. you know…. a life to live. It’s times like this that I find it most difficult to stay positive. It seems that I’m waiting for that other shoe to drop with these lab results I’m and preparing for the worst. The question is… Should I? The lab results are just telling the doctors what my body is already doing. I’m no different now than I will be when I find out those results so why should I be worried? It would probably be a lot less stressful to let the doctors worry about what the latest numbers mean and focus on what mattes most to me.

I’m quick to point out what is good in life because the reality is that I need to. I need to focus on finding the good because the bad is just one blood draw, phone call or ER trip away. I want to see the good and enjoy what I can while I’m still capable of it. I’m not delusional and I’m not drinking some really good Kool-Aid. It isn’t pretty, but it is true and it is what we deal with when we have this disease. With every peak, there is a valley. Since I’m on this rollercoaster I might as well enjoy the climb, marvel at the view when I’m on top of the world, enjoy the rush of speed that comes after reaching that peak, laugh like crazy when going left and right and appreciate the chance to do it all over again when coming out of that low spot. So it might not be the lab results or even that doctor visit that is so important, but instead it just might be the perspective and how you choose to handle it.

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