September 23, 2012

The Coin Toss

My dad was visiting last week, the week that we knew any time the phone would ring and it would be the genetic counselor with my test results.  The time before the call was a little heavy, as we were all gearing up for a battle but keeping it all inside so as to not upset the kids or tip each other over the edge.

My birthday fell in that window, and came and went without much note.  Hannah Jane apparently tried to plan a surprise party for me, but Joe was worried that the call would come during a party and if it was bad news, how awful that would be to have a private tragedy in front of a group of friends.  Good call.  It just really wasn't a time that any of the adults felt like celebrating.  So, it came and went with nothing more than a fishing trip with my dad and the kids and a bouquet of flowers from Joe.

Finally the call came on Thursday.  It was GOOD NEWS!  I went in my room to call Joe, who sounded so overwhelmed that I still felt a little worried about him.  Then I came into the kitchen where Pa sat at the table with Hannah Jane and said, "That was the call.  It's negative."  My dad froze and asked if I was sure before he got up and ran downstairs to cry by himself.  That made me cry, and Hannah Jane, who didn't know anything about how serious the test was, was really confused.  "Why is everyone so upset?" she asked.  I explained that we were happy and why.  Pa eventually came upstairs and we tried to hug without crying more.

It was weird.  We spent 10 days really spiritually preparing to face bad news with strength and resolve.  10 days tense.  10 days waiting.  Now we had all of this pent up aggression and fight in us and nowhere to send it.  Nothing to fight.  No monster to battle.  We were all surprised by how exhausted we instantly felt with the good news.  Not so much giddy like I would have expected.  I mean, there was a short giddy few minutes, but then there were naps and sort of aimlessness.

By day 2, we were trying to figure out how to move on and bring about the peaceful feeling that we had been expecting good news would bring.  My dad helped me with the kitchen baseboards, and while we were in the garage painting them, realized that our garage ceiling was about to fall down, so we got going on a second project together to keep busy.

By that night, we were able to sit around and talk about it like normal people again.  The kids had their final snuggles with Pa, knowing that he would be leaving before the sun came up the next morning.  After they were in bed, we talked about other family members who had not been as lucky in the coin toss as I was.  My dad has the gene, but being that the cancers that the gene brings on are estrogen fed, his odds aren't much increased.  But there are women in the family who are carriers.  Of the cousins in my generation, only one tested positive, and he will be able to use IVF when he's ready for kids to  make sure that the gene ends with him.  We talked about the weight that we'd been carrying and how half of the people who go through the same experience get bad news.  It's hard to feel too happy about our negative results when so many people aren't so lucky.

In bed, Joe and I talked about how we need to channel the energy that we had built up to fight this thing and fight it anyway, for other people, by continuing to participate in things like Relay for Life and other cancer research funding organizations.  I felt like I needed to really get healthy, take advantage of this second chance at a normal life that I've been given.  We mused about how hard it was to feel happy after all that time feeling tense.

Yesterday I drove my dad to the airport and then hit a coffee shop in Salt Lake City for the day to work on my book, which was sorely neglected during the 10 day wait despite a looming deadline.  I spent the day in the Corner Bakery Cafe eating paninis and drinking coffee and typing away until it was time to go to a deepening on the Baha'i election process at the Salt Lake City Baha'i Center.

The drive home was liberating.  In this house, there's no privacy to cry when you need to cry without explaining to the kids what is going on, to yell when you need to yell, to just feel big feelings without terrifying someone too small to absorb it all.  But alone in the van, I could feel however I needed to feel without explanation. Driving by myself, I sang way too loud with the Badasht CD that dear friends had sent for my birthday, and enjoyed fall for the first time that I had been able to appreciate its color this year. was good.

I came home to a straw fort that the kids had built in the front yard, all adorned with sunflowers and fuzz from the cottonwood trees.  Hunter told me that while I was away, he pictured us a mile apart, but where we could still see each other, and that we were running towards each other until we could hug.  Melt my heart!  That's about the sweetest thing that kid has ever said.  It felt good to be on my own for a day, and even better to come home to hugs.

This morning, Joe said it was the first night that he slept like things were good.  We both finally feel the weight lifted.  Now we're able to stop and enjoy Joe's new Baha'i faith (he declared just the day before we got the news that I might have the gene), so we read Baha'i writings as a family this morning for the first time ever.  We're all excited that we're walking a common path now, and we want morning readings as a family to be our new routine.

Ahh...I feel ready to get back out there and live a little!  Who knows what we'll pull off this week?


  1. Oh Skyla I am sooooooooooo glad to hear the news (and yay for Joe!!!!) I am sooooooooo relived and happy for you :-) :-) I had a similar experience (50/50 chance) at getting a gene for familial polyposis (basically early onset of bowel cancers) and I will never forget my dad breaking down in the doctors office when BOTH my sister and I received negative results - however I was only in my teens and I cannot imagine the scope of that test had I been a more mature adult with a family nonetheless, how incredibly intense it would be. Of my mom and her three siblings, three of them had it - so we were incredibly surprised and blessed that the gene in our family ended with us (none of her siblings had children). YAY for you and best wishes for your dear family...

  2. Yay! What great news! We've had our fingers crossed! Thanks for keeping us up to date.

  3. Thanks, guys. Such a relief! And Chelsea, I'm sure that sort of test is a stress regardless of age. We had a similar situation with one generation being mostly positive and the next being mostly negative. Odd how the odds work out sometimes.


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