Last week I went to see a liver specialist. My intent was that he could help me understand why my tumor markers don’t match the way my body is acting and feeling. My goal from this meeting was to understand what to expect from my body at this point. My hope was that I could walk out of his office knowing that there is nothing for me to try or do right now and that the path I’m traveling right now is the right one for me.
Well, I did leave his office with better understanding, more realistic expectations, and learned that I am an Anomaly! Anomaly is not a label that I wanted to have stuck on me. An anomaly is not a word that I ever thought would be used in describing me or even one that I would use in describing myself. I sat in this doctors office hearing that even though I have not had “hard core” IV drip chemo in a year; and even though I have not had other drugs in the last 7 months; I have made it another year. This expert told me to keep on doing whatever it was/is that I am doing because he hasn’t seen anyone with such low functioning or “good” liver live this long. I am an ANOMALY! I have made it an entire year longer than anyone expected. Now the questions remains-now what?
Don’t get me wrong, I am thrilled that I have made it another year longer than they expected for a stage 4 breast cancer with mets in the liver. But from my drivers seat this is not the seat I want to be in any longer. I am not saying that I am giving up, cashing in, quitting or any other means to an end you can come up with. From my vantage point things look very different. I am the driver and others are the passenger. You see right now I am driving a jacked up 18 wheeler which gives me an eagle’s eye view of all the passengers. I am not saying that I know what the passengers are thinking or feeling. I am just conveying to you what it is like to be in this seat, how it feels for ME to be in this position. You see, even though I have been granted more time, the question remains why? And if you are going to grant me more time could we make it better. I still have the anorexic looking limbs, the 6-7 month pregnant looking belly, no muscle tone; sagging, dry and wrinkled skin, nails and hair that don’t grow, upset bowels, limited energy, small to zero appetite, headaches, mood swings, and dry and flaky skin everywhere, and bones that bruise easily and heal very slowly. I even have the pleasure of getting to wear maternity clothes again because my stomach is always bloated. That is one look that I don’t know many women want to continue wearing or shopping for unless they are pregnant. I even have found I still get to have people look at me and wonder or even ask “how far along are you,” or “why do you look like that.” I can’t travel to the places I would like to see, I have to pick and choose what I can and can’t do with my kids. I see my husband trying to keep everything in the house manageable for him and when I have the energy and want to jump into help it actually can be more of a hinderance. I don’t mean to sound ungrateful or unthankful but hanging around in the current physical state I am in doesn’t make life better. It makes it incomprehensible. I know my family and kids love me but I also would like to see them not worry about me and to not drain their energy on me. I don’t want to keep hanging around when feeling this way and let me be out of my misery. Emotionally I feel like a person who was wrongfully accused of murder and was in prison and I am about to get out of jail but there are a few complications. So I have one foot on the pavement of society and one stuck in my 2’2 cell wearing the same orange outfit day in and day out.
Is there a reasonable answer to subdue these feelings? I think not. Expect for the standard answer, to appreciate each single moment of each day doing what it is that you want to do. To be present, to be honest and to be real. I would like to believe that everyone of us is an anomaly. That we surprise ourselves and our loved ones with the hurdles we overcome by trusting our gut and surrounding ourselves with people and experiences that beg us to want to continue on the path to well being, peace and love. Lastly, regardless of what seat you are sitting in when traveling in a jacked up 18 wheeler, the empathy, respect and understanding of how each may be feeling is OK and not judged or questioned. But is met with acceptance and the confidence that we are all in this together and we have each others backs!