Wednesday, January 18, 2012

Haunted House

Usually once everyone is asleep for the night, we're done... day over... peace and quiet... yay. But last night it's as if we were transported to a haunted house. The wind was whipping around the house howling and rattling windows until they seemed like they would break. The cats who are usually napping quietly at the foot of my bed were zooming around like lunatics, claws scraping against floor, yowling and fighting with each other. At 1a.m. little boy next to me started kicking and thrashing and yelling, half in a dream, half awake. Angry, inconsolable and finally stomped off into his own room to continue thrashing, to continue his misery there. He came back at around 4a.m. and said "sorry about that, I don't know what happened," which is a big deal, his ability to calm himself down and move on. And then we talked and laughed this morning about him getting stuck between a dream and the real world and being very confused.

We're both sniffly dogs, coming down with colds. I know people with low white blood cells aren't supposed to let sniffly boys in their beds but too bad.

I finally got a call today that my genetic test results are in. Two months seems an excessively long time to wait for such results as they play a large role in surgical determinations, but apparently it's a multi-part test each of which had to be approved {or declined}individually by my insurance company. If you have the BRCA gene mutation which accounts for 5-10% of hereditary breast cancers you're fucked. Many young women from families rife with breast cancer get tested and have prophylactic mastectomies and hysterectomies because it causes both breast and ovarian cancers and ovarian cancer is most often undetectable until it's too late.

I don't expect to have the gene. There isn't anyone in my family with breast cancer that I know of, although it is a mysterious and dysfunctional family so there are many members I've never met and know nothing about. Still, I'm unaware of a single breast cancer case. Unfortunately, I've been shocked before, but regardless, I hope, hope, and hope not to have this gene. I don't want a hysterectomy, that would really upset me.

What I find insulting and bothersome is that they won't give me my results over the phone, I have to meet again with the genetic counselor and that takes time of which I have so little, so little functional time anyway. I understand the situation, I know what the results mean and I'd like to be treated like a competent adult. If the test is positive, obviously, I would go meet with them to discuss, but why drag it out? Just let me know one way or the other. Now I have to wait another 2-3 weeks because they don't have appointments available. They're my test results, don't I have some ownership over them? I paid for the tests, It's my DNA, who is anyone to tell me when and how I can find out the results? It's my information, don't I own it? I don't like being treated like a child or jumping through arbitrary hoops. Nope, don't like that at all.

1 comment:

  1. I hope you and your snugglebug sleep soundly tonight! For what it's worth, that sounds like total BS, the not sharing the results.