Becoming a fighter

Living in the middle of the story of my life, I can’t always see how my small acts add to the big picture.  As much as my intention has been to do this cancer living in the most honest (and positive, when possible) way, it takes looking back to see patterns. Here are some of the clues to my story.  Since my diagnosis, the things I wanted for myself have been: a comfortable chair, nice slippers, the best sweatpants and sweatshirt on the planet, good pillows, and a TV in my bedroom (!? I have never wanted a TV in my bedroom—that should have been my first clue.)

I have noticed that my passionate fight for justice in this world has shifted.  The first pang of immortality for me was realizing that our world would not be fixed in this lifetime.  It is painful to know that there may be little to nothing more that I can do.  What if my biggest legacy is the heartbreak I leave in my daughter and other beloveds?  My spirit of excitement for the work I had been doing in the months before diagnosis was all but put out.

I haven’t wanted to say it out loud because I have such a huge team of fans cheering for me; but here it is: since my diagnosis, I have not felt like a “fighter.”  Don’t get me wrong, I have been, and continue to be, willing to do whatever I can, whatever it takes to be here.  The spirit of doing what it takes does not feel like fighting.  Part of me thinks that this is rooted in my long history of spiritual practice; part of me has no idea why I have not been driven to fight. 

I look back at the past two months since my diagnosis and what I see is that (without even knowing it), I have been making peace with my life becoming all about cancer.  I was getting myself as comfortable as possible for the impending pain and sickness of it all.  I was settling in to life as I expected it to be.  I was ready to accept that my work here was coming to a close and it was time for me to make the most of that reality.  All the while, thinking I was doing my best to live in the moment and stay present. 

A month ago I was offered a (possible) different outcome.  I switched from monthly chemo treatments that were scheduled for the duration of my life (with a 50% chance that that would be less than two years), to an oral pill that promises fewer side effects and for many (but not all), an extended life expectancy.  The day after the news, I was filled with anxiety.  Could I choose life?  Was it going to be safe for me to fall back into the folds of mundania—school, work, dreaming of a future for me in this world?

I have been facing that question for the past month with no clear answer.  I have not known how to make the shift out of my television chair into the world of the living.  I want to give myself some credit because these words make me sound like I have not been living, and honestly, I have been doing a pretty damn good job of staying happy, healthy, and active thanks to my friends and family.  What I am talking about has been very subconscious and subtle. 

This past weekend I went to a spiritual retreat and was invited to name my desires.  Every single one of my desires was about the world or my family.  It was clear that I gave up on desire for myself.  Lack of desire makes it hard to know how to make a life in this world.  I did not know how to shift. 

The next day we worked with the concept of surrender—surrendering to our fear, anger, grief, and apathy—so that transformation toward desire can happen.  Profound.  Seriously.  Let me just say, it was the most I have cried in years.  I cried for me, for you, for everyone and everything.  All of this big beautiful fucked up world.  I let myself not be the momma hen of managing my cancer—not be the chaplain of everyone else’s feelings.  I broke down.  Felt it all. 

Like magic, what opened for me was possibility.  I could have never known that playing momma hen and being “okay” all of the time was exactly the thing that was preventing me from stepping into life.  It is in that place where letting vulnerability; letting fear and grief happen that I can know I can survive not getting the world I so deeply desire.  And I can still want it anyway.  I can have desire for me.  Maybe I can even fight for it. 

Suddenly, I felt strong and brave enough to want for myself.  To let my own desires continue to be fed here and now. 

I am glad I have the pillows.  The sweatshirt.  The chair.  Not yet so sure about the TV—although it has meant more cuddling time with my kids.  But I want more.  I want to fight.  Not against my cancer—but for my life. 

Choices

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.