All the World is a Stage

A friend of mine told me the other day about a New York Times op-ed columnist who is catching heat about an opinion piece he wrote on Lisa B Adams.  The mother of 3 has been battling breast cancer for many years and has a well-followed blog where she details her experience from the front lines.  Bill Keller, the NYTimes writer, was criticizing her choice to try nearly every treatment possible to prolong her life.  In comparison, he presented the case of his father-in-law who chose to succumb to his death in a manner the author felt was “humane and honorable.”

I understand both sides to this story.  It seems appalling that this writer would pass judgement on the most personal and critical of another’s life choices.  Part of me wants to say (along with the rest of the stone throwers), “Hey Bill, she’s not your wife, mother, daughter, or sister, what do you care?” But, as he says, “her decision to live her cancer onstage invites us to think about it, debate it, learn from it.”  The debate is the part of this that seems so wrong.  Yet, the “think about it.. learn from it” is entirely right.

Her readers aren’t the only ones who are learning.  As she tries different treatment options, doctors and researchers learn from her, too.  Keller points out that ” only 3 percent of adult cancer patients who are eligible to enroll in clinical trials do so.” Perhaps her courage to fight is not only to prolong her life, but also with the higher purpose of furthering medical research so others’ battles don’t have to be so arduous.  Her public crusade is commendable and heroic and deserving of the utmost respect.

One of the many reasons I choose to write about my own story publicly is to help anyone else going through something similar by learning from my experience.  My path doesn’t have to be theirs and it certainly pales in comparison to most.  Every situation is different, everyone makes different choices.  Ultimately, I think Bill Keller’s piece shined a light on the opposite ends of the spectrum of medical treatment for terminal cancer patients.  Each comes with its own consequences and merits.   Perhaps, his article did more good than bad.  Maybe he set out to validate his father-in-law’s choice of a quicker, more pain-free death, but what he really did was alert his readers to Lisa’s story and her blog.  When you visit her blog, its simple design has a grace and beauty to it.  Two eye catching details: blue flowers in the top left and in the top right, “Give to Memorial Sloan-Kettering.”  Well played, Ms. Adams, well played.

To Conceive and Protect?

It feels like forever.  Months have now passed and while I have several drafts in this queue, none seemed worthwhile.  Each time I began to write, I either drifted to a negative place or the subject matter seemed too off-topic for this space.  When I set out to write this blog, I never thought I would publish so many posts.  I figured I would have given up a long time ago.  My recovery from the last BRCA related surgery (my silver lining) was done and my everyday no longer had anything to do with my genetic mutation.  

Yet, I always have the nagging thought: do my daughters have it too?  I push it aside knowing that I can’t do anything about it and dwelling on it will not help anyone.  Alas, the debate ahead still remains : #3.  My husband and I were out to dinner with our girls recently and as we drove home after bellies were full, we marveled at our success.  “They actually ate, we each had a drink, and we never even had to pull out the iPhones as entertainment!” The light at the end of the tunnel crowns like the first rays of dawn.  It will get easier.  Our everyday will be more enjoyable, less like running a day camp, followed by a restaurant, and then a mini set production of Little Girls Gone Wild, in which the wee ones strip and run around dancing and shaking naked body parts before finally being coerced into bathing and getting into bed.  (Sure, that was a little bit wrong, but the similarities are uncanny.)

So, do we really want to add another person to this team of 4? We think we do? (The question mark is deliberate.) We were very lucky to have conceived our girls easily. We don’t anticipate that that will be a problem for the third, but now that we know that I have this mutant gene (it’s more fun to say it like that and to think of it like a Wolverine mutation or Michelangelo the Ninja Turtle rather than what it really is), is it our responsibility to try to go about this a different way?  I’ve decided that we need to seek the counsel of an infertility specialist who has information regarding pre-implantation genetic testing.  We hope that options will be explained to us in regards to trying to eliminate the chances that our third child will have the BRCA gene.  Like we sought the advice of my breast surgeon when we initially discussed risks for living with BRCA1 (surgery vs. “watch and wait”, etc), we will gather the info and then make decisions. Just the thought of this whole process made me sigh out loud just now.  It’s daunting.

Many emotions rise up from where I’ve been hiding them as I confront this issue here.  I can’t suppress all of the feelings. This blog has been the cheapest form of therapy.  So here it goes: all at once, I feel lucky, nervous, concerned, and guilty.  Lucky that I have choices and possibly the chance to protect my unborn.  Nervous because I think I’m going to be absolutely crazy on hormones and drive my husband and children nuts just trying to put up with me. Also nervous because I feel so sick during the first 18 weeks of my pregnancies and I really can’t imagine being a good mom to my two girls while going through that again.  Concerned that hormones might trigger my genetic response to form a different type of cancer that I’m now at higher risk for (ovarian, stomach, skin, take your pick of any/all of the above).  With my lack of knowledge of fertility drugs and their effect on embryos, I’m also concerned about any health risks that might be elevated for my third child if I must use these drugs and whether or not they outweigh the risks of him/her having BRCA1.  And of course, guilty, because no matter what I do, I will always feel guilty somehow.  In this case, it’s mainly about not having protected my girls from this.  I didn’t know that I had the BRCA1 gene until after the little one was born.  I couldn’t have protected them, but is it fair to protect their new sibling?  I think so, but will they?  Oy.

You see how quickly these thoughts turn so negative.  A third child, a joyful addition to our family (although our meals out will probably not be as joyful for quite some time), this should be so positive.  The miracle of life is somehow jaded by the decisions we face.  And then I remember, these are decisions for which to be grateful.  There is so much we cannot protect our children from, I might have the opportunity to protect my child even before conception.  I can always go to that dark place in my mind, but I’m going to try to flip it around.  I don’t think the internet (or the universe, really) needs any more negativity.  It certainly won’t be my contribution.