Tuesday, July 23, 2013

Living With Uncertainties

Like all of us, I live with many uncertainties.  Before my cancer diagnosis, most of the uncertainties I thought about were not of the "life and death" magnitude that I think about now.  Back then I could sort out the level of uncertainties I had to deal with into two basic categories,  "big" deals and "small" deals.  An example of a "big" deal uncertainty was whether or not I would pass the Genetic Counseling board exam, and an example of a "small" deal uncertainty was whether or not I needed to leave the house with an umbrella.  Despite both of these examples being uncertainties, I had background information that helped gauge the amount of risk I was taking on.  I knew that if I studied for my board exam, I had a better chance of passing, and if I listened to the local weather forecast I'd know if I should pack an umbrella for the day. In other words, I was able to adjust the burden of my risk by my actions...you know...I had some control. Counter-balancing daily uncertainties are those things in life that are certain...the "for sures".  If I didn't pass my boards, Wynn would still love me, and if I didn't have an umbrella on a rainy day, I'd get wet.  

Patricia Briggs wrote, "The only certainty life contains is death," which is impossible to argue.  But since life can last a long time, there are a bazillion uncertainties to navigate and when life is going well, who thinks about the certainty of death. 

The most pressing uncertainty I wrestle with is how long my oral chemotherapy, Xalkori, will work for me. These thoughts are almost an obsession.  I've read information about other patients with the same or similar clinical profiles that I have.  One woman reported that she was part of the initial Phase I clinical trial for Xalkori and has been on it for 7 years.  Another man reported that it worked for 5 months and now he is on a traditional chemotherapy.  Most everyone else reported being on it for about 18 mos. to 2 years.  Since Xalkori use is so new and its use with my particular mutation is even newer, there is no background information for me to use to assess my burden of risk. It's just one more thing I'm not in control of on my journey.

There are some promising new medications that are in clinical trials now that are meant to be used when the current oral chemotherapies stop working.  As hopeful as I am, it presents yet another uncertainty...Will these medicines be ready for me to use when Xalkori stops working?

These 'general' certainties in my life have made it a little easier to manage the uncertainties.  They also help me know what to expect:

1)  I love my husband, children, family and friends 
2)  I am loved and supported by my family and friends, and
3)  Wynn will be late.  

1 comment:

Shirley Kroot said...

Yes, there are things we can control of in our lives, and when we go through a serious experience, we tend to prioritize what is REALLY important. Yesterday I fell and broke my right shoulder. I am going to the doc tomorrow.