Thursday, September 9, 2010

Making Light of Myeloma

Over the last couple of days I have been 'bashed' by a blog reader, via e-mail, for speaking 'lightly' about Multiple Myeloma.  Maybe it was the 'Hillbilly/ Moonshine / Revlimid  Parody' or something else. I wanted to share this experience with you, not for your support, but just to let you see how some people approach life when MM is foisted upon them. Somehow, I thought that this day would come.

She wrote this to me: 'Don't you understand what a dreadful, destructive disease myeloma is?'  'Don't you realise that people are dying from this?' 'This is no topic for... (humor)..'  And so on.

My response included the following thoughts:

Multiple Myeloma, as viewed in a vacuum, isn't funny. It is a destructive cancer. But there are many ways to deal with this diagnosis. I've made my choice. It may not be right for you and that's okay. 

Yes, I know all-to-well the darkness of MM. I know first-hand the extreme physical and emotional pain it delivers. I know how devastatingly expensive fighting this disease can be.I am no stranger to the strain and stress MM puts upon my family, friends and all whom love me. I live daily with the medicine and their difficult side effects.I know the depression of not being able to work or to lift up my kids.

I have experienced the fear, confusion and uncertainty of where this is all heading. I have seen it in my mirror, on the loving face of my wife and on the faces of the hundreds of MM patients I've met in person.

I know what it's like to be a father of two young children, praying that I have an opportunity to see them grow up. Knowing them and being their dad has been one of the most powerful things in my life. Every day with them is a gift because I choose to see it that way. Would the thought of this blessing have been with me every day without being stricken with MM? Or would my busy life relegated such daily thoughts to the background?

I know the dreadful fact that I might leave my loving wife too early. I am a much better person for having known her, learned from her, loved her, and received her love and support. I want to grow old and cantankerous with her, dog-gone-it!   

In no way do I hold myself to the standard of being a Myeloma 'expert', as you suggest. I am only an imperfect participant in my own personal journey. I struggle to understand all of the facets of the malady and the efforts of my team to vanquish it. 

I reluctantly started this blog to communicate with my family and friends about MM and our family's battle against it. Nothing more. There are only 15 followers and a hundred or so visits to the page every day. One must not visit my site to feel that that they're doing what they need to do to successfully exhaust 'everything important about MM'.   In the world of Myeloma, MyelomaYoureloma is not on the list as a 'must do.' And I am perfectly fine with this fact. I have benefited from the encouragement and loving support of those whom have contacted me through this blog. Many of them are MM patients or caregivers and they buoy my spirits in important ways they may never know.

Dear lady, I believe that you have the right to think differently than I do. And that you have the right to contact me with your thoughts. I appreciate the fact that you've taken the time to do so. I believe that you are in INTENSE pain because your father is battling this evil disease and you, sadly, can't cure it. I can't either. My wife can't snap her fingers and make this beast go away. But I do believe that it will eventually be cured - and my doctors do, too.

One of the most prominent physicians in the MM world took my hand in his and said 'If I don't screw this up, Sean, you will be given many years of good life.' To which I replied, 'Well, don't screw it up! There might be a bonus in this for you!' He laughed. The other doctor in the room also laughed. Ooops, there goes my attempt at humor again. I'm built that way.

You don't know me, but I refuse to surrender to Myeloma.  I refuse to let it destroy my relationships and to steal the beauty, in the midst of the darkness, of the world around me. I refuse to succumb to the idea that I should be dying every day.  I am much more interested in LIVING every day. I refuse to let MM change my light-hearted look at the world. I refuse to deny that I believe that God loves me and that I can handle what I've been dealt. I will continue, in my own way, to reach out to my MM warrior friends.

We are all connected through something I call the Burgundy Thread.   Burgundy is the official color of Myeloma, or colour for my UK friends!, and in my imagination I see an invisible, unbreakable thread that connects us all together, whether or not we meet face to face. You are not alone. There are many people out there willing to offer you support, including me.

Your correspondence has moved me. Your choice, and your choice alone, is to keep visiting my sight and/or to keep in touch. I hope that you do. Lambaste me  if you must -  I can take it! I wish you the very best and will think about you and your father often as you move forward.