Wednesday, August 22, 2012

Noisy Genes

I have the following quote hanging on the wall in my office:

Peace.  It does not mean to be in a place where there is no noise, trouble, or hard work.  It means to be in the midst of those things and still be calm in your heart. 

Now, let me be clear, this is one of those concepts to which I aspire, and I am far, far away from becoming a master of it.  In fact, I need think back only to yesterday morning to realize my distance from this Zen-like state – Annabel had taken a tumble down a few steps on the back porch and, not hurt but still shocked, was hysterical.  Cue Teddy, who decided it was just the right time to have a mental breakdown about the tiny soccer ball that was still missing from his new Soccer Guys set (we eventually found it under our bed).  There was lots of noise, and trust me, no calm in my heart. 

Anyways, I think I was originally drawn to this quote because I am one of those quintessential first-child, type-A, far-too-serious-about-everything personalities (even if I have you fooled), so I’ve always had to do a bit of calming myself down over small issues.  And when I first found the sign, I was in the middle of a project at my old job that had me working long hours, while very pregnant with Annabel, with a broken rib.  

But now, like so many things, this quote has taken on a whole new meaning, and I was reminded of it yesterday when the genetics counselor from Dana Farber called me back with the results to the genetic test they had taken for two main breast cancer genes. 

For a bit of context, one of the many meetings we had on my first day at Dana Farber over one week ago was with a genetics counselor.  She asked me all sorts of questions about my family history (even drew one of those little family trees – males were squares and females were circles) and then gave us lots, and I mean, lots, of information about genetic tests, their costs, their implications.  To be honest, it was one of our last appointments of the day and I felt pretty dazed at that point.  I wasn’t following much of what she said and I just wanted to go home. 

One thing I did understand from the meeting was that I needed a blood sample taken so that the one lab in the world with a patent on this process (Myriad Genetics out in Utah) could test to see if I carried the “BRCA1” or “BRCA2” gene.  Again, I try to stay as far away as I can from the clinical part of this journey (although that’s going to be harder and harder in the upcoming weeks) so I don’t have much to say about this test or these genes, except that I understand that if I tested positive for either one of the genes, it would mean I was at increased risk for cancer in my other breast and other types of cancer (especially ovarian cancer) in my future.  Even worse, it would mean women related to me could also carry the gene, and that was a can of worms I sure didn’t want to have to open. 

As has become the norm when I am returning a doctor’s call these days, my hands shook and my legs felt weak as my Mom and I headed outside to the driveway of the vacation house to return the genetic lady’s call. 

Negative, Negative, she told me.  I don’t carry either gene.  But as I have learned, it’s never that simple anymore.  The test that my insurance company would cover could tell us with 95% certainty that I didn’t carry either the BRCA1 or BRCA2 gene.  To be 100% sure, Myriad would need to run additional tests (called the “BART” test, again, spelling questionable) and that would cost $700.  My insurance company had already explained to me (in a 45 minute call that I have not yet recounted to you) that it would not cover this additional testing (but they will cover a $500 wig!).  I would have hemmed and hawed but my Mom wanted to be 100% sure so she gave a few important women in her life an early Christmas gift – $700 to be sure that the cancer-risk gene was not lurking in that remaining 5%.   

You’d think it’d be simple from there, right?  Unfortunately, it isn’t.  I’m still 32 with breast cancer and no family history, so the genetics lady told me about other tests that we could run to see if I carry any other gene that could lead to my condition.  By now, Brian had joined the party ’round the speaker phone.  Again, I found myself lost in abbreviations and percentages.  And that kicked-in-the-gut nauseous feeling returned when the genetics counselor repeated what she had said in our last meeting (but I think I chose to block from my memory) which was that if I carry certain of these other genes, it could mean that our children are at increased risks of cancer, even childhood ones.  That is a thought Brian and I honestly cannot bear at this stage so we decided that I would get well first then we would talk again about further genetics testing.  Noise, trouble, hard work.  And no calm in my heart

After the call, we went back inside to prepare lunch.  Brian’s parents had come down to Falmouth for the day and it was such a pleasure to sit outside under the umbrella on one of the most beautiful days of the summer and enjoy some hot dogs and hamburgers.  I calmed, and I think Brian did too.  Thank goodness for family. 

Well, I began this entry when everyone was asleep, but now Annabel has finished her bottle, lost interest in Sesame Street, and is dancing around me, trying to grab my lap top and climb on the back of the couch.  We have a great day planned so I’ll wrap this up. 

I have realized in the last couple days that I have made strides, albeit very small ones, towards the goal in the quote.  I have come closer to accepting that in the next year, or two, or twenty, this cancer is going to bring with it lots of noise, and trouble, and hard work.  But I’ve also started to believe that in the midst of all of that, I will find calm and I will feel peace.  I’ll still enjoy lunches outside with my family even after confusing calls with genetics counselors.  And I’ll still have my little girl grabbing at my computer as I try to make sense of my life.  In the end, that’s just the kind of calm I need.  

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