Wednesday, October 1, 2008

"Maybe They Are Wrong"

It is amazing the level of denial that people will try to thrust upon you when you tell them really horrible news. I know that all the dead baby mom and dads already know this and it shouldn't shock me, but I guess that I expected better.
Right after I left the office of the head of genetics at Big City Medical School to call my best friend who has been a nurse for 35 years she was indignant that I had been given this short life scenario and these two disease choices. Her exact words were "Well, How does Dr. Fancy Genes knows she isn't going to be hit by a car tomorrow?" As I was driving through rush hour traffic I was trying to digest this I and I said, "I'm sure she doesn't, but her thoughts are that I won't live a normal life span and my mom was lucky to live to be 64, and that explains why my mom's sister is so ill at 60, her brothers died at 23 and 45 and her other sister died at 38." I usually speak and write in run on sentences, so forgive the example.
My dad was the same. I tried to explain, using language that he could understand, that I had had a difficult day, that I wasn't up to balancing the checkbook with him or going online to help him set up the checkbook computer account. I finally had to tell him that the doctor had told me that there was a high degree that the illness that had killed Mom had been passed to me and that it would shorten my life as well as the girl's lives considerably. He looked at me and said "so you are talking about this disconnective tissue disorder?". ( I thought close enough) and answered yes. I then told him the statistics of 44 to 48 years for Vascular EDS and 36 years for Leoy-Dietz and expressed sadness my for my daughters who are also affected. He waited until I stopped crying them looked at me and stated that since this was his last night in Texas he would really love some Mexican food and would I call the family to see who was available to go out to eat.
When I called to make an appointment to speak to with my internist, he had already heard the news from the geneticist who had thoughtfully called with a plan of care that includes MRIs, xrays, and other diagnostic tools. While there is no real effective treatment and the disease is ultimately fatal, if you can have your aorta replaced before it ruptures in time you seem to survive for a while after surgery, however, this is a recurring process as my mom had 5 aneurysms discovered at autopsy and my uncle survived his first dissecting aortic aneurysm only to develop another one a year later.
I was the last appointment of the day, and no surprise to anyone I also had my own plan. Do all the plan but also get to my surviving aunt to get more info about our family history, track down my aunt's medical records, my uncles' autopsy reports and their medical records and to track down two cousins given up for adoption in the 1970s.
This may seem like a huge list but it will keep me sane while I wait to see which way the pendulum swings. As I was leaving I asked my doc what he thought and never a demonstrative man in the 12 years that I have been his patient or his coworker, he hugged me and said "maybe they are wrong".

5 comments:

Tash said...

This is completely unhelpful most likely, but lately when faced with odds (either extremely grim ones, like 1:4; or ones that make me feel like shit, like 1:1 kajillion), I've been falling back on the probability principle: either it will happen, or it won't. And once I boil things down to a 50:50 proposition I feel freed up a bit, because honestly? Everything is. You'll either come home safely from the grocery store, or you won't. If I ever get pregnant again, either my baby will die, or s/he won't. And I've got to tell you, there's something liberating (for me) about this mindset.

Thinking of you, and wishing you the best. Hell, I would've set out for enchiladas and a margarita myself.

Melissia said...

Tash,
Actually,
I had the tortilla soup which is to die for a a large margarita because you know, life is short! My new motto!
I am processing more every day and it really helps to read your comments. Thanks so much for that. None of my friends IRL even want to consider the possibility, so it is difficult.

hairyfarmerfamily said...

I'm so, so sorry to read these posts. I was hoping for better news for you and your family. Really horrible news for you to digest indeed.

I have no pertinent advice or helpful words, I'm afraid. I am hoping my son hasn't inherited the heart disease that has killed every male in my mother's family in their 40s and 50s, but apart from that, I can't imagine quite what you are going through, or hence, what to say. Except, again, I'm so very sorry. And I do hope that they are wrong too.

Karin said...

Melissia, I've just come to your blog from another so you don't know me, but I wanted to offer my support. Tash's approach echoes my own. I've experienced both those extremes of odds she mentioned - the 1:4 and the 1:3,000,000. It just showed me how random it all is. Not that this is comforting exactly, but my 'why' questions seemed to abate and my 'what do I need to do for myself' questions seemed come forward once I considered the randomness of nature.

I wish life was not so difficult. I'm very sorry that you are going through this. I hope for the best for you.

niobe said...

I don't have any of the right words, but I'm thinking of you.