Wednesday, June 03, 2009

Strange reaction

Mom & Megan on our trip to the coast last September

I bugged my Mom over and over about getting BRCA testing. This is a test that would show whether she was a carrier of a genetic defect that makes one susceptible to breast and ovarian cancer. She wasn't resistant to having the testing, it's just that she has continual, ongoing medical appointments and procedures and the BRCA testing kept getting lost in the shuffle.

We talked about it quite a bit, usually with the assumption that the testing would come back positive and what that would mean for Megan and I. Obviously we would then be tested as well, and if our tests came back positive, it would mean action. We could choose to be closely monitored for breast cancer. We might choose to have prophylactic mastectomies. Surely we'd have hysterectomies, since ovarian cancer is sneaky and appears often at a young age. I told my Mom I would probably wean Canaan, get pregnant, have one more baby and out would come my womb.

Well, Mom finally had the test done. It's just a blood test, but it has to be sent to the one lab in the US that does the test itself. The lab called and told her that her portion of the test would cost $1,300. She readily agreed - a testament to the love she has for my sister and I. A $1,300 test and she didn't even blink.

Megan & me

Yesterday Mom called on my cell phone while I was on a mad dash to Wal-Mart on an unsuccessful mission to buy black baseball pants for Malachi. She wanted to let me know that the test results were in, and they were negative. She said J (our beloved assistant at the cancer center - oh, she's really more of a family friend than a medical assistant) just had to let her know, and that this is such good news for us girls, and that Dr. M, my Mom's oncologist, said, "Woo hoo hoo HOOOO!!" when he saw the results.

Wouldn't you think I'd have the same reaction? I would - but I didn't. I told my Mom I was happy about the results and that maybe it would take some time to absorb, and that at the very moment Graham's vocal ticcing was more than I could bear - and all of this was true.

After Wal-Mart we hit Big 5, called Target, and ultimately ended up driving across town to get the pants. By this time it was around 5:30 and Malachi had been expected on the field for warm-up at 5:00 for his 6:00 game. 5:00 traffic wasn't helping matters.

As we headed across town, I was just kind of vaguely thinking about the testing, the results, Dr. M and J's reactions - and before I knew it, my eyes had misted over. Then tears were streaming down. What was this? I was crying and didn't even know why. Then it hit me. In a weird way, a positive BRCA test for my Mom would have been some kind of a reason for everything she has been through. A positive test for my sister and I would have formed a solidarity about the whole stupid thing.


But instead, it's just random, and it's just my Mom. Alone. Yes, we love her and support her and go to all of these myriad appointments and procedures with her, but the battle is hers and hers alone.

I'm not sure how to process this news that is unequivocally good. I am glad my sister and I won't have to wear these results around our necks, always wondering when it might strike. But we still have to figure out how then DO we proceed medically - how much monitoring IS appropriate. I am glad that I don't feel compelled to rush out and have a hysterectomy when my husband and I long for more children.

Most of all, with the heart of a mother beating within me and the understanding that brings, I am glad my Mom doesn't have to live the rest of her life wishing she hadn't passed on such a volatile gene. I watch Graham tic and hate that I gave him that. It's ridiculous to feel that way - no one has perfect genes - but I know my Mom and the love she has for us and I know she'd feel just the same.

So I will ask the Lord for clarity today and in the good news I will rejoice.


  1. that is wonderful news indeed! rejoicing with you.

    i always recite the verse "trust in the Lord with all your heart and lean not on your own understanding". my own understanding(and the understanding of the medical community) does not necessarily dictate our can just drive us crazy, and make us live in fear!

  2. Thankfully, Emily, the Lord's understanding is infinite. When we can't figure things out, even our reactions to wonderful news, He fully knows what is going on inside us and can place our feet (and thoughts)on solid ground. I'm glad you can continue having those babies, in peace!

    Psalm 147:5 - Great is our Lord, and of great power: his understanding is infinite. Yahoo!

  3. Anonymous11:30 AM

    Oh Emily, your reaction makes perfect sense to me!

    Some theories are that HG is genetic and that seems to be the case. My mom was pretty sick with all of us. I was sick with Jillian and I think I'm only slightly sick this time because I'm breastfeeding which is supposed to help.

    I feel so awful that I have probably passed this little "gem" onto Jillian and it breaks my heart to know what she will have to go through in order to have children of her own someday.

    It also worries me that my sisters will have to go through the same thing as well.

    It just doesn't seem fair.

  4. Wow, so much to process. Such a relief that you don't have to worry about that, but yes, so difficult to understand why your mom has. Seeing how much your mom loves and adores you guys, I'm glad she doesn't have to live with worrying that she passed it on to you.

  5. Emily, I think you are an amazing daughter and you and your mom and Megan have such an amazing conection and I can only hope to have that with my girls.
    I am so glad that you do not have to worry about not being able to have more children due to this but can understand your mixed emotions. I love you, friend.

  6. How lucky your mother is to have two beautiful and compassionate daughters, and how lucky you and Megan are to have such a wonderful mother. You three are truly blessed!

  7. (((EMILY)))
    I came in to see how your mother is doing.She is in my thoughts.I miss u much!!!You are such a wonderful daughter,mother,friend and GOD is sO proud of you.This I know:*) u are a testiment to many.
    We will never know why to many questions,however,I am glad that you are not a carrier.I pray that your mom gets well:(
    (((super big hugs))))