It has been three weeks since I started taking the oral chemo drug, Xalkori. I have not written since the onset of taking the pill. The good news about that is that life has been somewhat stable. There continues to be a roller coaster of emotions and changes. There have been unusual side effects—hives, watering eyes both have gone away. The nausea, and painful GI stuff is what I am finally figuring out how to balance with timing, diet, and other medications.
When life threw me the stage 4-cancer ball, I ran with it. I did what ever was the next thing in front of me to do. I had little time for letting big feelings cloud my living. I went into action and asked for people to show up (and did they ever—big time!) I connected with loved ones from all parts of my life and really celebrated my life. I was blown away. My workplace made Christmas for me, my sister’s coworkers pooled together a huge gift, my friends and family gave up what ever it was they were doing to do this: Cancer with Colleen.
Then came the great news—you have a mutation. You can take an oral chemo pill and all those dreadful lung cancer statistics may not pertain to you. That morning was the first time I cried. Getting a chance was the thing that broke me more than all of the bad news. The day after finding out I had a mutation I had another new feeling: anxiety.
There are no promises, no guarantees. Most of us live our lives without really weighing our life choices against statistics. Cancer invites you into a game of statistics and gambling and entices you to play. Gamble. I pride myself on my ability to live in the moment to stay here and now and not let my emotions attach to the past or future. But it is hard to ignore being told you have a 1% chance of living five years--even when you know and believe you could be in that 1%.
It was the day that I heard that I had the mutation that I realized that no matter how present I am, I bring to that presence my life experiences from the past as well as my hopes, dreams and fears of the future. As much as I don’t want to play the statistics game with cancer, I can’t shake the numbers from the way I live my life. When the prognosis no longer had set statistics, suddenly, my experience of “being present” took on a whole new emotional state. I felt possibility and choice in a way that my former prognosis--a lifetime of monthly chemotherapy did not allow.
When possibility and choice came up for me, as much as I felt grateful, I felt scared and unsure. It is that betting game—this pill has a 60% chance of diminishing my cancer possibly to the point that there will be no evidence of disease. There is a 25% chance that there will be a halt to the growth of my cancer without killing it off. There is a 100% chance that this pill will work for a limited time (7 months is average) and then we will have to try something different. (Here I go with statistics again!) There are many exciting breakthroughs on the horizon—I’d like to ride the wave right into this diagnosis ending up as more of a chronic condition than a terminal diagnosis. But for now, it is a terminal diagnosis with a very unsure prognosis.
My current life choices feel challenging in the face of these statistics—currently, I am in school but my energy crashes at about 90 minutes. Mentally, I could do my job, but I am far from able to meet all the physical demands. How do I make decisions about finishing school and going back to work?
I am starting to figure out how to manage this life as a person living with cancer. The hardest thing is not knowing where this life will take me and how to make the best decisions for me and my family. I think I should take my own advise--stay present as much as possible and make decisions from that place rather than from the unknowns of the future. I've always thought that was good advice.