Wednesday, August 3, 2011

Double Thumbs Down for UCLA

During my first visit with the Disastrous Doctor, I had to peer pressure her into giving me the blood test which would start the process of determining if I was a carrier or not. She felt strongly that I'd be better supported at the Revlon Breast Center because of the team of professionals who are there to help high-risk women.

I was super annoyed from the get-go. I didn't even know if I was at high-risk yet. Didn't know if I carried the gene. And quite frankly, just wanted someone to draw my f'n blood. Based on the experiences my sister Kara & Meghan had, I never anticipated it'd be so difficult of a process for me.

But it was.

At every turn.

When I finally wore the Dr. down to agree to draw the blood, she realized she didn't have the right forms and that you need approval from genetics to do the test. I called the office two times before my appointment to make it very very clear why I was coming in. With Kara's warning fresh in my mind, I double checked that they knew why I was coming in so they had all the right documentation on hand in their office.

I left the office on that day, June 9th, with an authorization to hit up the Breast Center. I called while I was walking to my car and became further annoyed when I was told that this appointment would last 3-4 hours and would consist of me meeting with a nurse practitioner, a genetic counselor, a nutritionist and a team of psychiatrists. Together, they would determine my plan, based on my medical history. And it wasn't even a guarantee that I'd be getting my blood drawn that day.

For someone who doesn't even know if she's a carrier, this was just too much. Too overwhelming. Too unnecessary for where I was at.

I politely declined that appointment and instead worked to be seen by a genetic counselor.

I was grateful that something like the Breast Center existed and knew that if I did in fact find out I was a carrier, that it would be the first place I'd call.

Which is exactly what happened.

Shortly after getting the news last Friday that I was a BRCA2 gene carrier, I called the Breast Center and made an appointment for this Thursday. I wanted to get information and move forward. I wanted to be proactive and get right in there to learn what this news really means for me.

"Oh, I see you've made an appointment before and canceled?"

"Yes, I was waiting to find out if I was a gene carrier before coming in and I just now learned that I am."

"Okay let me see what we have for availability."

I cannot tell you how much it frustrates me that people have such a lack of compassion and understanding of the stress, anxiety and fright that one experiences upon receiving this news. How difficult would it have been for the person who answered my call to say "I'm sad to hear that news but I'm glad you've called us today so we can help you and get you moving in the right direction. Let's see how soon we can get you in here." Or some variation of that?

But people don't listen. And they don't think. And they get into routines. And they forget that this is the first time I'm dealing with this, even though they deal with it every single day of their work life.

I hung up with an appointment for 8/4.


I like it.

I needed something to look forward to- not in an excited way, of course. But I needed to know that I was doing something proactive to learn how to integrate this information into my life. And what it all meant.

So when I got a call this morning at 9am saying my appointment had been canceled, I was further frustrated by UCLA and incredibly disappointed that I didn't have this opportunity in my immediate future. They wanted to reschedule me for 8/18 (I'll be in Maine, so that's out) or 9/1.

Waiting until 9/1 seems cruel. But I don't have much of a choice.


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