PATIENT NOTE : I have now been at this struggle for nearly two years. If you have followed the blog, the journey has been challenging, enlightening, devastating, occasionally entertaining and a host of other -ing words that describe the journey. As you can see there has been a huge 'gap' between my last post and this one. Explaining this is not quite simple. So, I will just say that the life of a patient in many ways is beyond our control and sticking to even the best made schedule has become at best impossible... I think that THIS is one of the toughest challenges a patient faces. I will even go so far as to recommend to others that you just don't waste much mental energy on running your life to the minute. I am blessed with a wonderful family and fantastic support group of friends who, without their presence in my life I would most likely be dead from exhaustion just trying to keep it all together. I have also been lucky (as I have mentioned before) that the side effects for me have not been debilitating in the least - comparatively. Given all this, where does that leave me?
Someone asked me once, how having cancer has changed my life. Answers came flooding in, but before long my head was swimming so I needed to take a moment to figure out how to come up with a response to my friend's question without sending them screaming from the room with madness, or putting them into a coma induced by excessive detail... Here goes. Having cancer brings everything in your life to an absolute crushing halt. It sounds simplistic, but the rest of the world keeps speeding on ahead as usual as my world is completely brought to a stand still. Imagine one of those huge boulders in the desert that seem to have been just placed there. Perhaps an even better image is that of a large Zen boulder/gravel garden. The swirling patterns of pebbles around the large stones is a good example of my day to day life at times. I feel 'stuck' among the rest of the world, destined to weather things by myself, unable to move with the flow. I feel like some kind of schizophrenic actor where on one level I try to maintain the image that I am flowing along with the 'normal' world; paying bills doing work, doing all the other regular things that people do. However, the other face, is my private one, the one no one sees, the one that occupies MY 9-5. This one can get really, really ugly. It is SOMETIMES a good place, but it is getting harder and harder to discover the good in my space. Why? You can probably guess... If, during the past two years, I had had ANY indications that my cancer was controllable, maybe keeping my chin up would be easier. But, it simply hasn't.
I try to look for positive answers, things around me to give me hope, and for the most part it is all seemingly melting into a big vat of cliche-driven bull-shit. Now, please realize that this in NO WAY is a reflection on the support I have received from family and friends during this time. Without their support I am sure I would have already given up and not be here. Like the boulder though. I sit, I sit, I sit. I wait. Hell most of the time I could not tell you WHAT I am waiting for anyhow. Am I waiting to feel 'sicker' - since I don't 'feel' like I have cancer? Am I waiting for some test to tell me 'You're cured! You can now move on with your life!' Am I waiting for some doctor to throw up his hands in the air and say. 'Sorry, Scott. There is nothing left to try.'
Swirling around all this is all the other stuff that life tells us we have to be concerned with. Keeping up with the mortgage, making 'final arrangements', trying SOMEHOW to lessen that burden for my family. Knowing that financially my life has been a failure in this regard... we have no 'nest-egg' to fall back on, no stocks to cash in, on which the family can depend. Hell, I don't even have enough in actuality to dig a hole in my back yard and put me in it when the time comes. I am sorry that this sounds like some pity party, oh-whoa-is-me, but I cannot help it. Dove tailing on all this is the list of 'what-ifs', and 'what I won't be able to do's'. The fatalistic part of me made a 'bucket list' - then the realistic side of me understands that living out a bucket list requires loads of money - money I don't have, so why bother.
In this struggle, I want more and more to have someone, somewhere tell me what my 'expiration-date'. The simple fact that no one can do this is fast becoming my biggest frustration. Now I recognize that there are always a host of reasons that doctors cannot do this. So, I am left reading faces, expressions trying to get some idea of where I am headed.
Well, I will try to end this entry on a bit of an upswing, despite not really feeling that way anyhow.... I am, despite all my bitching and moaning, blessed with people who seem to care so much for me that I just don't feel deserving. I feel that I owe them great things to be done with the time I have left. This is another example of the kind of thing that spins in my head as I sit, at home in my chair trying to put together reasons to do SOMETHING, ANYTHING that might add some meaning to my day to day existence.
This week, the weather has been beautiful and my dear friends Kristen and Kelly came up to help get my studio ready for Fall work. Their energy and support for me, all along this journey along with that of my family friends, clients and customers who seem, to deem, my artwork good enough to purchase. This continued support makes me willing to keep going, to keep creating, to keep fighting and to remember that the effort I make along the way can provide me a way to deal with all this junk and some how keep going...