Friday, June 28, 2013

My Story Begins

Today I had my first appointment with Dr. A and this time I was the patient.  Kinda strange. It was the first time seeing him in person since mom was in the hospital and entered hospice care. We had communicated via email and phone a number of times since mom passed back in February.  I knew that my preventative endoscopy was long overdue (the last one was early summer of 2011).  I was suppose to get one last year but with mom getting diagnosed and then me getting pregnant, it was advised to wait until after the baby was born to do the procedure. I was fine with this because I did not want to cause any complications while pregnant.

Earlier this week, I reached out to my genetics counselor and Dr. A on the course of action for me going forward. I was now 9 weeks post-pregnancy and got the OK from my OB that the procedure would be safe to do now.  I wanted to be as proactive as I could be even though flashes of my mom's endoscopy last May brought back some very painful memories.  

Dr. A wanted to meet in person and go over everything. I decided to meet him at a different clinic. Apart of me just didn't want to go back to the clinic mom went to. Too many familiar faces, and I know there would be questions from all the chemo nurses and staff who were fond of mom. We were regulars there for most of last year and I just didn't want to see that look of sadness when I tell people what happened. I wanted to dust that off and start fresh and I did.

I decided to take Baby C with me too. I felt that I needed to be with him. He was going to get me through this. His smiling face gazing at me...his cooing...and his eyes just looking deep into mine. That is what this was about. 

As I waited patiently for Dr. A to come into the room, a familiar face peeked in. It was my genetics counselor! She was a site for sore eyes. Coincidently, she was just making a quick stop at this clinic location and ran into Dr. A in the hall who mentioned I was there today. We sat and talked for a few minutes. We oogled at Baby C as he talked baby gibberish. She told me of some interesting studies in the genetics world for diffuse stomach cancer. Interesting stuff!

Shortly after she left, I had my consult with Dr. A. We went over A LOT of information. The first thing he told me was that he wanted to coordinate my care going forward. He said that the research from BC Cancer Agency was still in the works and we don't know anything concrete right now. So, going forward,  I have to assume that I am positive for the genetic marker in order to be as agressive with prevention as possible. He definitely wants me to get going on routine endoscopies. Instead of once a year, he recommends twice a year. Also, he said that he is going to find a GI that is local who would be best at early detection. He wanted expertise. We also explored other testing that I will eventually have done in the coming year or so: endoscopy ultrasound, CT, MRI, breast cancer monitoring, and colon cancer monitoring. As you know, having the CDH1 marker not only makes you pre-disposed to stomach cancer, but also breast and colon cancer. He wanted to make sure that all angles of this were going to be looked at. We also chatted a bit about prophylactic gastrectomy..which we will explore down the road here.

I left the appointment feeling empowered. A beautiful sunny day, the wind in my hair, my son in the back seat..I felt good. I can't predict what the next few weeks, months or years will bring. But, what I do know is that life is worth living and I'm going to be calling the shots every step of the way in order to see my son grow up. 

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