title explained

Onward and upward! something that you say in order to encourage someone to forget an unpleasant experience or failure and to think about the future instead and move forward.

My e-mail: jjmiller6213@comcast.net

Tuesday, March 15, 2016

Beware the Ides of March!

My Mother used to say, "Beware the ides of march", in a deep, powerful voice, then hunch her head down and look around as if someone were sneaking up on us.  My sister and I would have such a laugh. It got so every March 15th, we'd go through this tradition, the minute we came into the kitchen for breakfast.  

I started it with my kids when they got a little older and first thing in the morning, on that day, I'd call my Mother and in my deepest, most foreboding voice say the phrase and then hang up the phone.  The Ides of March was a very superstitious day for us--much worse than any Friday the 13th.  

My sister and I still say it to each other, but it is no longer a funny tradition.

I posted this on Face Book this morning.
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This is personal, and many would say, “Why does it matter now?”

I thought this might be a good venue for my family and cousins to finally see the truth and as information for others who might come up against this disease.
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Our Mother died 46 years ago today, 3 months shy of her 54th birthday.  I was 31, my sister 17.  There was never a cause found for her death. She had been extremely healthy all her life.

 Every year, on March 15th, I wrote a letter to Henry Ford Hospital, requesting ALL her hospital records.  I wanted to know if this was some sort of genetic quirk that we should know about.  

It took me 20 years, but I finally received the thick, envelope in the mail.  Inside were letters between her doctors at Owosso Memorial, Henry Ford Hospital and the Hematology specialist in Detroit.  Notes from the specialist saying, “I can find nothing wrong with this woman.” 

It has been very difficult for me not to know the “why”.  All we knew is that it seemed something was wrong with her blood.   Yes—a brain aneurysm (after a blood transfusion) ended her life, but that was not the cause of her underlying two year “disease”.  The autopsy showed nothing!

Fast forward to a couple of months ago.  An elderly lady (87), who (coincidentally) lives on my street, was hospitalized. She had the exact same symptoms as my Mother.  “They” thought she had internal bleeding so an endoscopy/colonoscopy was done, kidney biopsy, liver biopsy, spinal tap and finally a bone marrow puncture.  Exactly the tests our Mother had.  

“They” gave the lady blood transfusions until that didn’t help anymore—exactly what our Mother had gone through.  The lady passed away in December.  She was also seen by specialists.  It took them a long time to come up with a “maybe” diagnosis. 

(Coincidentally) My doctor was one that this lady had seen, so, when I had my yearly appointment with my doc in January, I asked him about this deadly, whatever it is, disease. 

They now “think” it is MDS—Myelodysplastic Syndrome—the prefix “myelo”, having to do with spinal or bone marrow.   Not Aplastic Anemia.  Not Leukemia.  Not Multiple Myeloma (blood cancer).  The bone marrow “simply” stops  making red blood cells, but also stops making white blood cells and platelets.  It usually starts in younger people.  They are (mis) diagnosed with anemia and given B12 injections and put on iron supplements.  It gradually gets worse.   

There is no known cure.  Possibly a bone marrow transplant could help, but that is not a guarantee. It is a rather rare blood disorder with about 8,000 cases in the US each year.  Because it is so rare, there aren’t a lot of research programs.

So—here we are, 46 years later, still with no real information on what causes this anomaly or how to treat it.

Why does all of this make me feel better?  Because now, I am pretty sure I know the “why” our Mother died, and I didn’t want to wait until I got to Heaven to get the answers!  Don’t we all want to know the “why”?


But, I also have to wonder—were these just coincidences?  That I would just happen to live on the same street as the elderly lady with the same disorder?  That my doctor just happened to be one of many that treated her?  

I rather think it was God’s way to finally ease my mind.

Maybe not the "why", but the "what"?
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One of the last photos of my Mother.  She looked as vibrant, happy and smiley as she always had.

14 comments:

  1. Rich half-sister died of Myelodysplastic Syndrome about 15 years ago. There was no guessing..she was diagnosed pretty quickly. They put her in the hospital for a 6-week extensive chemo and it had no effect whatsoever. She died about 6 months later. Nasty, nasty disease.

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    1. WOW! I had never heard of this disease until this January! I wish I had known and I could have gleaned your mind to see if his half-sister had the same symptoms.

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  2. I've never heard of this, and I suppose unless one has a family member or friend who did we wouldn't know. For your sake, I'm glad you have at least some answers about your mother's condition. It's so very sad she passed into Heaven at that early age. I'm sorry, Judy. So sorry.
    xoxo

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    1. She is one person I KNOW FOR SURE, who's soul is in Heaven! That makes it much more comforting. She was a "true" Christian--always helping someone, always happy no matter what and such great faith. Not like the critical, judgmental, gossipy christian I am. Mother went in through the front gates. I'll be grateful if I can get admission through the back door!

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  3. Like Sally, I've never heard of this disease, but I'm glad that getting some answers eased your mind. How odd that the hospital didn't send the information to you sooner.

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    1. I thought perhaps my Daddy had the records sealed because it was genetic and he didn't want my sister and I too know. His name also was on the autopsy. Illegally, the final letter I sent to them, I forged his name on it, requesting the records be sent to us both, then I used my address. He never wanted to talk about any of it. He adored our Mother, and when she died, he was devastated, but like the rest of us--denial of feelings and go forward, and never speak of it again.

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    2. Yes, family secrets I understand. People always have their own reasons for keeping them, but even many years later, they can still surface. I'm glad you got the info.

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  4. Sadiversaries are hard enough without knowing the exact cause of death. My mom was said to be have anemia for decades and had teh B12 injections. We didn't know the cause of her death for a few weeks. It was REALLY hard but at least we did find out.

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  5. awwww, so young, so sad. she is a beautiful lady and looks so happy and healthy in this picture....and such a pretty smile!!!!

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  6. You look like her, too! No matter how long my mom has been gone---I still, (after 5 years, Mar.30 this year)---want to pick up the phone. Especially at 3pm and 8pm---after her 'rest time' from lunch, and after she'd gotten into bed at night. She was 96, and I'm grateful for every year... but I still miss her everyday. I know you miss your mom, too, and I am sorry you had to wait so long to get a clue to end the mystery, and the anxiety we all have when have no answers.
    Trudy

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    1. Yes--I do look like her, which makes me feel good!

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  7. How sad that your Mom had this and you lost her so young. God, it sounds like MDS sucks the very life out of you. I'd never heard of this disease until now. I'm all too familiar with the other bone marrow disease. Multiple Myeloma's what my hubby died of.

    I also had low red blood count, like your Mom, well past menopause, so it was weird. I got the endoscopy, where they found nothing. Fortunately, my red blood count rebounded with iron and B12 supplements. No wonder my doctor keeps his eye so closely on my blood counts!

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    1. I had a friend die of Multiple Myeloma--nasty, horrid disease!

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  8. Judy,
    I applaud your determination to find the real cause of your Mother's death. Sounds like a terrible affliction. You do look so much alike, and she was way too young to leave.There is no other pain like the lost of a parent.

    My brother is dealing with what sounds like a similar issue. It makes him feel awful but he soldiers on and works really hard.

    I have been quiet.....Ms G is not doing well. Age is catching up with her. LM and I feel so sad but are realistic. Not easy.

    Sending you happy thoughts and wishes for a lovely Easter!

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