Name:
Location: Palm Beach County, Florida, United States

Recently have been told I look like Mary Ann from Gilligan's Island. I hadn't heard that in years, but that is a good place to start as to what I look like, although she had a better bod. I have three boys and have been married for 13 years. Born of a Navy family, in Hawaii, one Mom, one Dad, one sister and one brother. The eldest of three children. BS in Applied Mathematics. Consider Pensacola my home town although I moved every 2-3 years of my life growing up. Currently work in the aerospace industry in an engineering position while being a Mom. Of Celtic heritage and very proud of it.

Saturday, October 30, 2004

A Little Background on My Mom Peer

J. was diagnosed a year ago this past August with a disease called Myelodysplastic Syndrome or MDS. Sometimes referred to as pre-leukemia, a new drug was put on the fast track and approved to treat the disease this past May, but by then it was too late for J. as hers had already turned into Acute Myelogenous Leukemia or AML.

J. started her treatment for MDS here in West Palm at our local hospital, but when she was diagnosed with AML, she chose to receive her treatment in Tampa at the Moffit Center. She received excellent care there and we were all very pleased. She went through chemo and although when we first discovered what was happening, she told me over and over that there was no way in hell she would ever have a bone marrow transplant, as she had seen one done on Discovery Channel and thought it horrific (a good reason I don’t need to watch that stuff), when her doctor’s were able to get her into remission, she started the process of finding a match. It was irrelevant as she stayed in remission less than two weeks, the MDS throwing her back into a leukemic state. The doctors were able to keep it at bay, but I think she was never really back in remission. I am unsure whether in the end the MDS took her life or the leukemia… but it really is irrelevant. All that matters is she is no longer with us and left behind are two boys who miss their Mom and a husband missing his wife.

When she was diagnosed with MDS, I was the Mom tasked with information gathering. It suited me. I have friends in the various professions that I could ask questions of and I knew how to get what I needed out of the internet. The medical jargon doesn’t scare me. Having worked in a statistical field for so long, I could make my way through all the numbers, seeking out the answers she needed. I did my research and was told to wait for her call. She didn’t call and didn’t call and I thought perhaps she had her answers, until that one morning at 7:30 AM, an hour before her flight to Sloan Kettering. And then she asked, “What have YOU found?” and I had to tell her. It was grim, but I was upbeat. I could not bring myself to give her a verbal death sentence. I am not God. Who am I to say? I was very optimistic, but pragmatic and inside I was sick. Typically it is a disease that hits people older than she was, and my reply to her when speaking of survivability was, “Why not you? Why can it not be you that makes it to the end and sees your boys graduate from school and get married?” And then I said, “But you know, if it turns to leukemia… the story changes.” And it did. Within 4 months, she had AML. I knew then her days were numbered. I never expected her to make it to June. She made it to October. She never asked me my opinion on her prognosis. She knew I knew.

3 Comments:

Blogger _Jon said...

When I first read that Lung Cancer has only a 10% survival rate I was crushed.
When I read that if it reach the brain the rate dropped to less than 5%. I had a "preminition" that it would for My Love.
When I held the printout from the MRI showing the 10+ circles on her brain that shouldn't be there, my hands were shaking.

I remember driving to the chemo treatment on that monday. My brain was expecting just another round of treament. I can see in my head the memory of my sitting at the light on the service drive of southfield freeway at outer drive. Tears were just running down my face and I had no logical reason for crying. My soul *knew* what was going on.

By the time we got to the clinic (about 30 minutes) I was back to "responsible" - collected, calm, business-like.

But in my head those statistics came back to me.
My intuition had told me the result of the situation many, many months before. I had been told the outcome. But hope springs eternal. I did everything I could.

Besides, someone has to be that 5%, right? Why not us, right? Why couldn't *this* time be the _different_ time? Right?

5:30 PM  
Blogger Boudicca said...

Well that was my attitude in the beginning when we talked. It was 'Why NOT YOU!'

I printed out something by Stephen Jay Gould, the evolutionary biologist called, "The Median Isn't the Message." http://www.cancerguide.org/median_not_msg.html

I truly believed it. But when things got worse... it is so much easier, my friend, to not have eternal hope when it is not your beloved, but rather a friend and you are but a bystander as the tragedy unfolds. Hope is what makes it all the more bearable... it is what ultimately sees us through the end of the day.

8:05 PM  
Blogger Ellie said...

My mother died from MDS January 3, 2001. I read today they may have found a cure. I am sorry about your Mom. When my mother died, her condition had turned into Aplastic Anemia. She lived about 6 weeks after that. She lived with MDS about 8 years.

8:08 PM  

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