I alluded to the fact that I have not been as prolific a writer lately in my last post. It hasn't been there for me. I realize now that is because I am chewing on some new emotional aspects of my situation. Be careful don't read any farther if you are not ready for some negativity. I think part of it comes from passing the one month mark. Part of it comes from the intense feelings that the Minga brought up for me. Overall I think it is just a new phase in the journey that I am on. It has been a phase of intense, overwhelming sadness. I'll try to relate what it is like here.
I am 41. I have been married to my wife for 18 years and with her for 20. I have two beautiful girls who are 5 and almost 7. I have lived my life as much as I could as though each day were precious and something to be treasured. I have travelled all over running rivers and having adventures. I have sailed far away seas and climbed tall mountains. I have been to places that few other people have been to. I have embodied a commitment to live my life in a way that makes me happy. But I have also lived my life as though I was going to live to be an old man.
Cancer has put an end to that assumption. While none of us really know when we are going to go out, I have had to spend some time contemplating a drastically shortened life. I don't really want to get into the medical aspects of what the survivability of multiple myeloma are, that is not the point. This is about the emotional side of cancer. I've been sitting with the feeling of not having much time left. I am not one to ignore feelings. I know that I have to confront what is going on for me in order to move past it and that has been really hard.
Lets start with the worst case scenario. What if the treatment regimen doesn't work? While this is unlikely it is my biggest fear. So what will happen to me is that I will never get my beautiful athletic body back. Pain will continue to dominate my life my condition will continue to deteriorate until I am sick all the time and then I die. While I fear this, I think it is really unlikely. I don't think it is going to go that way. I don't spend a lot of psychic energy on this fear, but it is there.
Next scenario is different. In this one the treatment works. In a year or so after chemo, a bone marrow transplant, surgery on my hip, I am back on the bike, playing with my kids and post symptom free. The median time for post treatment MM survivors being symptom free according to some statistics is about 3-5 years. So after that sort of time frame I start having symptoms again. I go back into treatment and live in the hell of treatment for some unknown period of time until I die. This is the scenario that haunts me. It is only human nature to want answers to this but the nature of the disease that I have doesn't lend itself to being predictable. And I am a unusual multiple myeloma patient. I have heard stories of MM patients that have gone through the treatment 10 years ago and are still going strong. The part of this that is hard for me is not knowing how long I've got and assuming the worst.
I have been, in my mind, picturing only a year or so of life left and trying to come to terms with that. It has been really hard. The hardest part for me is thinking about not being able to spend much more time with my girls. They are so busy and active right now and I am so feeble that I struggle to connect with them as it is. The thought of not being with them as they grow into young women is really more than I can bear at times. Not being with them for all of those landmarks of growing is so sad for me. I am sad to think that I might not be there to celebrate all of the successes just kills me. To imagine not being there to hold them when they are sad drives me insane with sadness. I am not worried about me. I am worried about what will become of them.
I have spent too much time lately thinking about that. What I have come to realize (all over again) is that I have no control over what is going to happen. Just that act of thinking about all of that is self defeating. I am killing the opportunity to have a good day right now by spending time thinking about what might happen in the future. I thought that I knew better than to go down that road but I found myself yesterday paralyzed with overwhelming sadness. I am definitely snapping out of it now. I realize that the days that I spent stuck in despair are days that I am not going to get back. Yes, it is part of my process to feel all of the feelings. I still will. But I am going to have to be more careful about going down the depression road. It just isn't worth it.
The fact of the matter is that we are all living on a short deadline. At some point we are all going to keel over. That fact is certainly up in my face right now. I am most likely not going to be old and gray with the chickenhawk but I do have today. And I am pretty sure I have tomorrow. And I'll be dammed if I am going to waste any more time. I am going to try really hard to enjoy every moment for the gift that it is.