Tuesday, April 22, 2008

Congenital Chest Wall Deformity??

Well I got a surprise when I went into see my radiation oncologist last week. She explained to me why my radiation takes 2 sessions instead of 1! I'm a 30 minute job instead of a 15 minute job. She asks me, "Are you aware that you have a congenital chest wall deformity?" I just stared at her...a WHAT?? She then said, "We call it Pectus Excavatus".....my mouth dropped again. What in the world was she talking about???

Well in a nutshell this all means that I have a sunken chest (this I knew...it was something I was born with and something I had accepted about the way my body was built...more of a cosmetic thing I didn't like, but what can you do?) Ok, so this sunken chest issue gets complicated once you have cancer and need treatment I found out!!! As it turns out my heart is basically right on my chest wall. There is no lung next to my chest wall, in between my heart and chest wall, like all of you have!!! Instead my heart is just RIGHT THERE!! My sternum is sunken in and I have a decreased lung capacity because my lung is off to the side instead of being right where it should be. OH MY GOODNESS SAKES!!!!!!!!!!!

Ok, so after I got over the shock of pectus excavatus Dr. Lee told me that because of this deformity (and yes she kept using that word, 'deformity'--ahh!) then they have to use different types of radiation fields. They can't simply radiate with strong, penetrating radiation the whole time. They are having my hold my breath to decrease the effect on my heart. But they have to use different machines and blockers because my heart is in a different position that they weren't expecting.

She then went on to tell me that she can't 'guarantee' anything about my heart. She wanted me to know that the risk to my heart is there and with me it's even higher than the average radiation patient. She said they are doing everything medically possible at this point to reduce the risk to my heart, but she said pectus excavatus is a rare condition to be working on with radiation and unfortunately it's making things harder for everyone.

So I am keeping my chin up and thinking positive thoughts for my heart! It's amazing the things that you learn when you are 30 years old and think you know a lot about your health..and then to find out you have some crazy 'deformity'. Oh my goodness.

Well there is your trivia for the day.....9 days of radiation down.....about 21 or so to go. Yeah!! =)

Smiles,
Heidi

P.S. These are the cheerful cookies my parents gave me back in October when I was diagnosed. I needed something cheerful to look at today! =)



2 comments:

kristen said...

sorry to hear about the new struggles...i know you didn't need any more! hang in there!!

kristen said...

sorry to hear about the new struggles...i know you didn't need any more! hang in there!!