Friday, March 29, 2013

Cancer in every nook and cranny of my life

There is an idea that I really struggle to express properly about cancer and this whole process.  The thing that I have found in this journey, is that time is somehow compressed, in terms of figuring out how you feel about things.  The experience distills many vague notions that you may have thought or felt.  In essence, it tests every theory that you have, in a very short period of time.

Because with cancer you need to figure things out real quick: how you define family and community, how comfortable you are with risk, what you think about God…the list goes on and on.  And you have very little time to figure it out, because people come out of the woodwork to offer help (if you are blessed like we have been), you are making decisions about your health that define your comfort with risk, and God is either going to make you very angry, or comfort you.  (And perhaps a bit of both) Regardless of your reaction, you might be having some face time with God, sooner, rather than later, which makes these thoughts a very practical matter. 
I really think that this is a process of distilling what is already there.  And cancer forces us to speak of those thoughts, not perhaps with our words and voices, but by virtue of every decision that we make.  I often say that you vote with your feet, by what you do.  This process has not changed my ideas, so much as expressed them and clarified them.

How do I define family?
I have always had very liberal ideas about how a family is defined.  Some define it in terms of common blood, which is perfectly reasonable and acceptable.  The phrase that “Blood is thicker than water,” is what truly matters to some people.  (I have never considered family in these terms myself, except when talking to my geneticist.)  Under normal circumstances, and over time, as many small decisions are made, I have come to learn that some people, even some in my own extended family, define it in this way, which is perfectly understandable.

My children have been blessed with aunts and uncles by blood and marriage, but there has been room in our hearts and in our family for others.   ‘Uncle Pete’ has been devoted and doting, ever since my children were born.  Their Filipino Uncle who never fails to mark a birthday, even from New Mexico, is a small example, an expression if you will, of how we define family in fairly open terms.   Cancer has distilled that expression, and we now have great affection for many that are not kin, but considered within these walls in familial terms.  Our family is quite large these days.
But cancer did not suddenly cause us to consider outsiders to be family, only amplify what was already there.  Some with cancer close ranks, pulling blood relatives in even closer, which is simply an example of this journey forcing them to express how they define family.  It doesn’t matter how you feel about these things, but cancer causes you to say it out loud in a way, because others can see it.  You are forced to show how you feel, because there is no hiding from it.

How comfortable am I with risk?

Normally, we have a million small tests of our comfort with risk.  Occasionally speeding, going for it, even though you are out of birth control pills, racing to the bank to deposit a check in order to cover the one you just wrote…a million small shaves that, with varying degrees of consequences, define our comfort with risk.  And with the luxury of amending our thoughts, ideas, and actions over time, shaping and reassessing as we go along.
Cancer is like putting money down on the table in Vegas.  You are strapped into a chair at a high stakes table, and often you find that you have to push all your chips to the center.  All In.

My sister went skydiving a number of years ago, and asked me if I would go.  I believe that my answer verbatim was “The day after never.”   I am generally pretty uncomfortable with risk.  I would play penny slots in Vegas, given a choice.
Now with cancer, there are no clear cut answers.  The doctors present you with options, and to use Dr. Getty’s phrase, “You aren’t going to like any of them.”  They seldom say anything with certainty.  I remember that in contemplating the surgical options for Brent, Dr. Getty had said that aside from leaving the tumor there, there were no wrong answers. (Amputate, flail hip or reconstruction)  It was a really a lifestyle choice…  How comfortable are you with risk?

It was all risky.  It was all bad.   But we had to choose.  And this would boldly say how comfortable we are with risk.  What did we think?  What the heck did he mean by “lifestyle choice?” (There is a whole ‘nuther topic on knowing what they mean, long after the fact---you suddenly understand it, when you actually face some circumstance and think “Ahh, this is what they meant!”)
Now this would be getting a bit ahead of myself, and venturing into what I think about God, but had I truly known, and fully understood the risks (not in any way suggesting that possibilities weren’t adequately explained to me, just that you cannot really ‘get it’ until you are there), I am fairly certain that I would lack the courage to do Brent’s surgery in New York.  And God, I believe, protected me in my blindness.  I do not in any way regret the decision to go, and am exceptionally grateful to Dr. Healey, even with the difficulties. But I know that if I had a glimpse of the future, particularly of the delay in chemo, the risk would have been far too great for me. 

Because mostly, I am a coward.  I am careful and deliberate.  I do not invest aggressively, needing big retirement.  I am generally content with what I have.  And I felt that having Brent, in whatever form, was enough.  And yes, in case there is any doubt, I was scared of making the wrong decision for him.  But, in retrospect, there could have been delays with any form of surgery, and in all honesty, he could still relapse regardless of what we did, or might do (May that never be the case, please)

Cancer forces you to make large cuts, rather than small shaves, if we return to the sculpture analogy.  The form of who you are, and what you are all about comes out, pretty boldly.  I have never been bold before.  In anything.

What do you think about God?

Now, this is a touchy subject for many people. I have generally been pretty private about my feelings about God. My ideas have changed little over the years, but this experience has distilled my private musings.

In full disclosure:  We are not members of a church.  When asked, I say we are generally Protestant.  And while this may strike many as an ill defined theological position, it illustrates neither apathy nor atheism, despite how it might sound.  Cancer has distilled this notion in me as well.
I cannot look back over my life and fail to see a purpose.  I feel that I have been blessed from the very beginning. (How is it that I wasn’t born of a prostitute in a third world country?) 
I have always wanted my children to see God, one of love and beauty, wherever they are.  And should they feel closest to love in a Catholic church, listening to mass in Latin, finding beauty and comfort in those traditions, I want them to feel free to go there.  Should they feel closest to God in their garden, in awe of the details of nature,  then that is where they should be.  I think that the message of the various religions, the names that we have for God, well, they are as individual as we are. 

As much as we define ourselves through our actions, we are also expressing our feelings about God in a way. 
We say something about ourselves as we parent, for example. There are moms who need to be ultra-prepared, reading loads of books and taking birthing classes.  I have a friend, who planned her child’s c-section, keeping in mind the cutoff date for kindergarden registration.  Lots of people have names selected ahead of time.  Some parents follow a very strict schedule and routine.  Knowingly or unknowingly, this is all an expression of who they are, which is a bit different than me.
I was very comfortable not knowing the sex of my children, and while we did enroll in Lamaze, it was a one day crash course.  We had no names selected, which caused us much teasing (You had to have seen this coming—you had 9 months!)  I enjoyed imagining what my children would be like, and I have often said that in the end, when I was so big that I could not get out of my own way, so uncomfortable that I could not sleep, and was simply just done being pregnant, these daydreams helped to get me though.

I suppose the analogy with God is no different.  All mothers are aware that that they are pregnant. They feel the movement of the baby, and know that at some point they will meet them face to face. (Some have a different awareness, and adopt…just knowing there is a child out there somewhere for them)  Some need to read, to study, to prepare.  And some are comfortable with the mystery.  I have always said to friends as they embark on a new phase of life, that whatever picture you have in your mind about parenthood, or marriage, well, it will be wonderful far beyond that, but definitely not the picture that you have in your head (which is the only thing you can say with certainty), no matter how much you imagine, plan or read.  (Not to diminish the value of study and preparation) 
I am equally comfortable with the notion that God is a mystery.  I feel that presence, but do not have to have all of the answers. I recognize that there are as many ways to express our feelings about God, as there are ways to become a mother and to parent a child.  The substance of that expression is more important to me than that form (sprinkle in baptism, dunk, don’t baptize at all…to me it doesn’t matter so much as the recognition of that bigger purpose, and living a life of love)  
I have respect for the various forms of that expression: the ideas of the Jehovah’s witness that comes to my door, the long tradition of the Mass, the spontaneity of the Baptist's song, the thoughtful study of the Talmud…the manner and tradition is rich and varied.  In my mind, they are all beautiful.
How has cancer distilled this notion about the mystery of God and my comfort with it?  Well, first, we know that there are all sorts of people praying for our family, and we welcome the prayers, however you form them and whatever your tradition that brings you comfort and love.  
Second, I strongly feel that this is where we are supposed to be, and that there is purpose in this journey.  I have to believe that there is reason, or a plan, because before I was even born, the eggs that would become Brent and Lauren carried this mutation of the cancer gene.  So, it could be argued that I was in fact born to be the mom of a cancer patient.  I do not choose to see this as a curse, but a blessing (because, I think my kids are pretty awesome, questionable genetics aside, although I am hardly impartial) and try to help others through our experience.  This helps direct me to my purpose.
I was raised in a home where the words “I don’t know” were seldom uttered.  There was a strong need to have answers, and to be right.  During adulthood, I have worked (and needed to work) on the notion that there are often no single set of right answers.  If ever there was a journey to affirm this concept, we are living it.  No one has the answers for us, doctors included.  But everyone can show compassion.  And everyone can show love.  That is what I am left with, and what I think matters in the end, the love.  I don’t know everything about God, who is ultimately going to surprise the hell out of us all, I suspect.  But I do think that he is all about love.
If I am wrong, and there is no God, is living a life full of love such a bad way to spend it?  Compassion, connection and love?  For me, there is no other way to be.  Some find God in the security of firm knowledge that their church provides, which I love to hear about. But me, I find God in the mystery.  And ultimately, I believe that God is where you find comfort and love.
I mentioned that I am fairly uncomfortable with risk.  I have had all these ideas in my head for most of my adult life.  Our cancer experience has distilled these ideas, and simultaneously provided me an avenue by which to express them, with the potential of helping others.  I would never have thought to do this, had we not begun a caring bridge, and I became more comfortable opening myself, our family and our journey to others. 
But I think that this is what I am supposed to be doing.  Writing it down, and sharing it, well, that is the bold cut, rather than the small shaves, that cancer has brought to me.  With cancer, there is no hiding who you are.

1 comment:

  1. As always, thanks for sharing, Ann. You guys are never far from my thoughts.