GREY MATTER LIFE

Maybe it’s because I have two boys. Maybe it’s an undying curiosity and an inability to respect personal and private boundaries. Maybe I am too sensitive to the subject. Nevertheless, I am asked all the time if I want more children. If I want to try for “that girl”. I’m asked if three boys are in my future and then of course there are the obligatory questions about if I can have more children… “What’s your doctor say about getting pregnant… will all the pregnancy hormones make your tumor come back?” I don’t know, want to ask him yourself?

It is amazing how complicated things get so quickly and I never even opened my mouth. I never indicated I wanted to discuss it. I never said how I feel, what I think or want and I’ve never openly expressed my fears. Aside from a few close friends and my husband, I’ve never brought it up. I will not lie, each time these questions get tossed in my lap my heart sinks and aches. I feel sick as I stumble to cheerfully deflect the question and change the subject.  

Having another child was always the plan. That is, of course, before the piece of shit moved into my head. Our plans moved to the back burner and we may forego them altogether. This has been the most difficult and painful part since my diagnosis, surgery, recovery and today as I face mortality with no idea where I will fall on the statistical chart.

Unknowns are insanely complicated.

I vividly remember sitting on the exam table (alone… yes CRAZY!) when got my diagnosis in 2007 at my first neurosurgeons office. Just about the second thing out of my mouth after I said “You mean I have a brain tumor?” was “So, I can’t have anymore children?” To which he responded,

“No. Of course you can.  You shouldn’t make any changes in your life. Do what you would have done and don’t let this affect your decisions.”

While no longer my Doctor for a multitude of reasons, I carry those words with me.  Since I moved my care to Emory with a new Neurosurgeon in 2008 we’ve never broached the topic again with Doctors. I suppose we hoped it would come up, or that maybe someone would ask. We never asked. I guess since we never knew where we stood on the topic for sure, we’ve probably feared judgment.

So here is my emotional quandary.  No one can tell me how long I’ll be stable, free from medications, another surgery, radiation, chemo, etc. Yet, let’s be honest. No one can tell you that either as you sit here reading perfectly healthy. What I do have is statistics. I have generalizations. I have averages and yes, I know… I need to ask and get a medical opinion. But, here’s a question or two. Do we live life as we would have before all this shit went down and deal with chaos as it comes, when it comes or never comes? Or do we plan for the worse case scenario that the beer truck comes sooner than later and then when I am old and my children are grown and nothing happened I’ll have regrets?  

While I have, until now, publicly buried my feelings, I’ve adopted thus far a perspective that we have two healthy, beautiful boys who are now a part of this tumultuous adventure. Whether sooner or later, the adventure will eventually cause them pain and sadness. Is adding another child to the mix who will feel and experience the loss of a mother with them a responsible thing to do? Would all the happy, loving moments make up for it and make it worth it? Is it a matter of the quality of the experiences rather than the quantity of time? I tend to favor the side of the argument it may not be responsible, but I can’t say that I am totally convinced. I am unsettled and Paul is open minded.

Close friends have said to me that there is no guarantee in life for anyone or anything. That we should live life to the fullest and do what we would have done and take each day as it comes. Anything can happen to anyone. Just because I know about my brain tumor, doesn’t mean that life is over and forward life decisions cease to happen. I agree, but I don’t have answers. I don’t know. I just have feelings and a perspective. In a perfect world it would be so much easier to have more than just statistics, generalizations and averages. Maybe that’s the biggest lesson and message here. Life only comes with three guarantees. Life, Death and Taxes. There is no perfect world.

I’ve spent my life, like most everyone, making decisions based upon what I know in the moment hoping that it is the best decision. While hind sight provides an alternate view at times, no one can ever know what the future bears.  I have certainly regretted decisions that I made out of fear and those made out of anger. I’ve also learned from them. Yet, the problem about living with a life threatening disease is that it constantly threatens to alter your entire life and how you live it and perceive it, all while it is concurrently and perpetually teaching and challenging you.

As I wrote before, I am a mother, wife, daughter, family chef, laundry goddess, chauffeur, gardener, domestic goddess, survivor, advocate and patient. I believe that I am not more one than another.  

So in the end, decisions can be made from a place of fear allowing the diagnosis to reign supreme and define who we are, or decisions can be made based on what is known with respect for the magnitude of disease balanced with hope, love and a zest for living life.

I still have no answers, but for those who felt that they must just know, our life is complicated and so were all the questions that have been thrown at me.