Thursday, March 29, 2012

Negotiating With The Big Man

Several times along the course of my breast cancer journey, I've had to plead, cry, and negotiate with The Big Man, and this time when I mention The Big Man, I'm talking about God. I'm happy to say that, while there have been times when His answers to my prayers have been difficult to understand, I can say confidently that He has heard and granted my wishes time and time again. I realize that making it seven years with Stage IV Her2+ breast cancer is a miracle in itself. My presence here today is living, breathing proof of God's answered prayers. And yet, even though The Big Man Upstairs continues to answer my prayers, I always want more.

This week, I received tumor marker test results and found that my tumor markers are rising, again.

I was never a patient who hung her hat on tumor markers. I wanted always to look at the bigger picture and didn't want a weekly or monthly reminder of my battle. Instead, for six years, I was happy with making a plan and sticking to it for three months at a time. I was happy that every three months I could steel myself for the unknown. I lived every three months happily and trying to maintain as much normalcy as I could. Then, once every three months, four times a year, I would hold hands with My Big Man, ask Mom to fly into town for support. Together we could look cancer square in the face, get my scan results, and come up with a new gameplan.

This year, though, my world turned upside down in October. My doctor told me the cancer had control of my body, and what was once a cancer contained in my liver had blossomed into spots in my lungs, bones, and throughout my lymph nodes. I started contemplating death, and not death someday, but death soon. I started contemplating leaving my job that gave me so much strength, support, camraderie, a sense of normalcy, a sense of accomplishment, and a sense of purpose. I changed all of my passwords and wrote them down for easy access. I finally sorted through our file folders and organized paperwork, threw out seven year old documents and bills, and cleaned house in case Big Man had to take over the running of the household. I actually wrote down and printed out and put in a folder labeled "Legal Documents" instructions in the case of my death. I imagined my funeral. I read Bible passages. I listened to hymns. I cried, but I also felt a sense of control and peace.

And then my tumor markers started falling. The Taxol and Herceptin combo started working, and week after week I started taking notice of my tumor markers for the first time. By December, my tumor markers fell from 965 to only 75. I started rooting for my tumor markers. I started getting hope and inspiration from those test results. I realize now I also started hanging my hopes on that test result. Now that my tumor markers are rising, I'm not finding hope in my day-to-day accomplishments as much as before. Rather than making my three month leases on life count, I'm getting dejected with every passing blood test. The cancer is suddenly taking over my mind and my mood.

My whole family, also, has started asking, "Did you get results yet? What are your markers doing? What does this mean?" My  family shares my pain when the results are poor. And now, without intending that, we are sad and defeated by the cancer on a weekly and monthly basis rather than every three months. Cancer is controlling more of our lives.

The doctors do not react to every test result. We do not make major treatment decisions based on a handful of bad blood tests because it takes a long time for trends on a cellular and blood level to actually translate into changes at the tumor level. It takes a long time for tumor markers to add up to actual, measurable tumor growth. So we were, in essence, getting very upset and worked up about results that were not going to impact my day-to-day treatment decisions in the slightest. These tumor markers were fabulous tools for encouragement when things were going our way, but now they are simply a hindrance.

This last week, my tumor markers rose to 312. I am upset. I am scared. My mind is wandering to sad, dark places. My Big Man and I cuddled together in silence after the results came back. Until Big Man broke that silence by stroking my bald head, looking down at my face resting on his chest and saying "You can't go anywhere. It's as simple as that. You aren't allowed to leave me. I can't handle that. So there."

And I decided to make the same "So there" statement. I will not allow these tumor marker tests to rule my life. I will not speak of them again on this blog. Instead, I will only get upset and nervous and scared every three months at scan time. Scans are coming up again on April 11th, so I suppose this is an easy promise to make for now. We will see in April and May if I can regain control and perspective. Can I go back to focusing on the bigger picture? I have made three month long goals for myself and my family before. I am going to make these same sort of goals now.

In October, I had a negotiation with God. I asked, and prayed, and begged that he please let me live to see my baby niece born.

My sister-in-law is due on April 6th. God has granted me that wish. God has answered my prayers. I am sure that on April 6th, as I watch a new, perfect life emerge before my eyes and as I become an Aunt for the first time, I'm sure I will have another negotiation with God. I'm sure I will pray that he let me see this beautiful child grow up. I know I will pray that He gives me the chance to share in her life. I want her to know me. I want her to love me. I want to hear her say my name. I want to see My Big Man hold her. I want to see my Big Man fall in love with her. I want to see my Big Man turn to me with a smile and imagine me as the Mommy.

Instead, I should simply sit back and enjoy that one day.  I have to take a deep breath and remember my favorite excerpt from Matthew 6:

          “That is why I am telling you not to worry about your life
           And what you are to eat, nor about your body and what you are to wear.
           Surely life is more than food, and the body more than clothing!
           …Can any of you, however much you worry, add one single cubit to your span of life?
           And why worry about clothing?  
          Think of the flowers growing in the fields;  they never have to work or spin;
           Yet I assure you that not even Solomon in all his royal robes  was clothed like one of these.
           Now if that is how God clothes the wild flowers growing in the field…
           Will he not much more look after you, you who have so little faith?

           So do not worry;
           Do not say, “What are we to eat? What are we to drink? What are we to wear?”
           Your heavenly Father knows you need them all.
           Set your hearts on his kingdom first…
           So do not worry about tomorrow: tomorrow will take care of itself.  
           Each day has enough trouble of its own. “