Back in Spring of 2006, Sumheda Ghate, a genetic counselor with Prevea, sent out an invitation to all members of our extended family to have a family meeting about our BRCA options. Because of the extreme size of our family and unique history, researchers at Creighton University’s Heriditary Cancer Institute approached the family and offered the actual test to be done free of charge as long as they can track our family and use our results to help in for future research.
The meeting had good turn out; there was representation from almost every one of the families. Sumheda presented us with information about the BRCA mutation and what the testing would be like. There were a lot of worries about insurance coverage or problems during the question and answer session—classic Jadin moments of pessimism. She tried to calm those fears by explaining that legislation had recently been passed making it illegal for insurance companies to discriminate based on genetic testing.
I left this meeting certain that I wanted to get the testing done. I thought, "It’s free, I’m sold." My dad wasn’t so certain. He was leary of the insurance problems. But thanks to my aunt having already identified the gene, I didn’t need my dad to do it.
The decision to get the testing done was a simple one for me. Of course I’d do it. I always wanted to know and someone offered to do it for free. You don’t have to ask me twice. I sent in the information as soon as I could and heard back from them right away.
I don’t remember the exacts for the dates, but shortly after that I received a kit in the mail. There were very specific directions as to how and when to draw the blood, several questionnaires to fill out, and a large biohazard bag to send it all off in. I filled out the informed consent. All over the forms were clear statements about the risks of participating in this study. I thought to myself, “I’m young, I can handle this, it won’t be a big deal.” My dad still insisted that I have no record of this in my medical file, so I had to find a nurse who could draw blood for me. We found someone who could draw blood for me at our home. She came over one week night. We sat at the kitchen table, she put the plastic thing around my arm, quick prick, and within a few minutes all the vials were filled.
I also had to designate how/if I wanted to receive my results. I designated that I’d like to have a consultation with the doctor over the phone. I think in a way, I was afraid to get the results in person with Sumedha. I knew what the results in my heart. I didn’t want to be embarrassed in front of a stranger crying over something that I knew all along. That and the fact that my dad made sure nothing would be in my medical records!
I packaged the set and sent it off. I knew that I’d have to wait up to six months before hearing my results. I didn’t think too much about it in the meantime. My mind was elsewhere…our wedding!
I remember coming home from work one day to a message on the machine saying I needed to call them back to set up an appointment to go over my results. It was getting close now.
I set up the appointment for 4:00 on a week night. It was on my mind all day long at school. I had told no one at school about it. I sat through a staff meeting knowing that I had to get moving if I wanted to make it home in time. I remember bursting through the door afraid that I’d miss the call, but then pacing the kitchen actually waiting for them as I had plenty of time. Pacing is a very Jadin trait.
I remember Dr. Lynch asking, “So what do you think? What is your prediction of the results?” Everything in me wanted to say "I know I have it." But something made me say “No.” I rambled something about trying to think positive when I knew in my heart what the correct answer was.
Then he went on with “Well, you are positive for it.”
I said “OK” and in that moment I don’t think I even heard what he continued to say. I was just trying to make it through the rest of the conversation without crying. I didn’t want to sit there blubbering. I had a good idea that I had it already, but still those tears flowed. There was no way of holding it in. I don’t remember many of the details so it's a good thing they sent a packet in the mail with their recommendations. He quickly passed the phone onto a nurse who went over the rest of the details. The one thing I remember them saying was that I have an 87% chance of developing cancer over my lifetime. Then it was, ok, thanks, have a great day, and click. The rest of the night… blur of tears.
I remember Mitch saying “I knew this was going to happen.” He was talking about how we had something planned, maybe going out to dinner or something, and I was too sad to do it that night. He didn’t say it in a mean way, he just said it like he know he’d to pick me up from rock bottom that night. And he did. He always has and always will. I’m so lucky I have him.