Friday, November 30, 2012

Quick update

Chris and I met with genetic counselors Thursday who are attempting to deconstruct my family's medical history and decipher how it relates to my present situation. They're attempting to rule out any undiagnosed syndromes that may have made me more susceptible to squamous cell carcinoma post transplant. This is all in order to better tailor my future treatment.

As they interviewed me, they drew my family tree, extending out to my parents' parents, mom's and dad's siblings and half-siblings, and noted which people related to me also had cancer. Out of those many people, I could only confirm that my dad and I had had cancer. There was a gray area concerning my older brother who died in infancy. My parents wouldn't talk about it, so I only know that he died before he was a year old and that it had something to do with a blood disorder.

After nearly 2 hours of talking, they determined that my cancer is largely environmentally driven and not genetic. This is good news for my brother and nephew.

On a side note, environmentally driven does not mean that the nanny parked me next to a toxic waste dump when I was a tot. It means that my cancers are likely derived from a host of environmental factors that I've been exposed to or exposed myself to. It doesn't mean that they can pinpoint the exact cause of the leukemia or squamous cell cancer, only speculate.

The counselors discussed getting a DNA sample from me so that they could have it analyzed to better customize my treatment. The problem is that I've had a cord blood transplant and a bone marrow transplant. Any blood pulled from me would not actually be representative of me. It would actually be that of my donors. The only way to get my original DNA is to do a skin punch biopsy. Freaky, right? They plan on discussing it with my team of doctors and making a decision next week.

I had a host of tests done today including chest x-rays, an EKG, and a CT scan. I met with the internal medicine doctor whose job was to decide whether I was fit for surgery. He peppered me with what seemed like a thousand questions. When he wasn't satisfied with my answers, he grilled Chris. He listened to my heart and lungs. I have Graft versus Host Disease of the lungs, so theres a lot of scar tissue in my poor lobes. I managed to squeak by and he gave me the green light to proceed.

He also informed me that my thyroid is misbehaving again. I'll have to get it rechecked and then probably have to double my synthroid dose again.

Monday, I'll meet with my transplant team and have more tests done. I'll probably post something Monday night.


Nancy said...

My dear Ann,
I just caught up with your last three posts! OMG!!! Seriously? I can say this, you are a trooper and will get through it.

Skin punch biopsy... I always thought that if we were to commit some type of felony, we should only leave Skin DNA at the sight. If they were trying to match it to our blood, they'd never come up with an exact match. A perfect CSA Crime. I never thought that you would actually need a skin biopsy for anything. Ann, do you have to do everything? Seemingly so.... I'm so sorry for this. I'm shocked and so worried about you my dear friend.

Take it easy and I know you'll follow the docs orders... keep me up to date.

Reading your blog reminds me of how I'm not keeping up with my own care. I've been a negligent patient this year. My New Year's Resolutions include getting all this post 50 year old tests done in 2013....

sending hugs you way.... n

Frosty Duncan said...

there's always a tinge of hope in your writing, keep up the positive and the writing :) It heals a lot