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  #1  
Old Sun Nov 6, 2016, 12:01 PM
Stevie-Ray Stevie-Ray is offline
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Join Date: Nov 2016
Location: Michigan's Sunrise Side
Posts: 2
Our Story

I am a 60 year old man, married to the love of my life, a 63 year old girl from Pennsylvania. We met in 1972 and married in 1975. Had a wonderful marriage in a time when divorces were getting rather common, and in 1980, disaster struck for our first big test. The wife was pregnant with our first, miscarried, and went directly into rheumatoid arthritis. Not just RA, but the worst case of it her doctor had ever seen. Within 5 years she was already undergoing her first replacement surgeries, MCPAs both, a year apart. She has since had both THAs, both TKAs, and Hoffmann procedures done on one foot twice. She has also suffered 2 broken femurs and a broken tibia and fibula. We were never able to have any kids, since her 5 miscarriages, and tried to get our living in with vacations and such whenever we got a window of semi-healthy opportunity. In-between those times, I was pretty much taking care of her. This past April, she complained about being short of breath when walking even in the house. Long story short, I had her checked out, her hemoglobin was 6.2, her platelets were 15K, indicating anemia and thrombocytopenia. Transfusions of both were in order, along with doctor visits to find the cause. Bone marrow biopsy was ordered-she never made it. Tripped over the cat in the house and broke her second femur. Hospital stay for nearly 2 months, something I never care to repeat, as we need to go to one over a hundred miles away. She finally got her biopsy while in her third hospital, (we were in 4) they diagnosed her with high grade MDS. (blast cells 17%) She was told she had 4-16 months. After final hospital, UofM, we came back home to see about getting her treatment at the local cancer center. Her oncologist recommended Vidaza and she has had only one cycle, and had to have the second one put off, mostly because of suspecting her going into AML. Second biopsy, according to pathologist shows 10% blasts, so Vidaza will continue at a reduced rate tomorrow, and of course supporting fluids, which are getting far closer together. I fear she won't make it, however, as her RA makes her very weak. And the night fevers are rampant not only with RA flare-ups, but just a little reading here will tell you also with MDS and Vidaza, so what to do there, other than Tylenol? I'm losing my love, my best friend, my entire reason for living, and I'm about numb right now. Seems what I've been doing for the last 36 years is all I know, and I'm going to be completely and utterly lost when she's gone. I'm watching her slip away daily and feel there is absolutely nothing I can do about it. I've never felt so helpless in my life.
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  #2  
Old Sun Nov 6, 2016, 06:30 PM
Sally C Sally C is offline
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Join Date: Dec 2010
Location: Chesterfield, Va.
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Dear Stevie-Ray,
I am so sorry that I don't have anything I can say to help in response to your oh so tragic and sad story. All I can wish for you and the love of your life is God's Healing and especially His Peace for you both in the coming days. How I wish there was something I could do.
God Bless,
Sally
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  #3  
Old Sun Nov 6, 2016, 08:03 PM
JordanN JordanN is offline
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Join Date: Nov 2014
Location: California
Posts: 59
Wishing you both the best

Hi, Stevie-Ray!

I just wanted to let you know that your story really touched me, and I am sending you and your wife all the well wishes I can!

My dad spoke about my mom with the same unconditional love that you do about your wife. My mom passed away twenty years ago from ovarian cancer, and it was devastating for all of us, but my dad handled it so courageously and did an amazing job of making a good life for himself and all of us in the years since.

He was diagnosed with high-risk MDS in 2014 with very scary blood values and BMB results. He was treated with Vidaza which managed to keep the MDS at bay for about fifteen months (it never improved any of his values, but nothing got worse either) before it turned to AML. Although his activity level really decreased, he was still able to enjoy his life with friends and family until the very end. So, even with a very poor prognosis, there is reason for hope and time to continue sharing your life with your wife.

You sound like an amazing caregiver, husband, and compassionate person! I am so sorry for the struggles you and your wife have had, and I will be praying for the both of you as you weather this storm but know that you have really touched the heart of someone who lost her dad at this time last year!

Hugs and well wishes to you both!
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  #4  
Old Mon Nov 7, 2016, 10:56 AM
Margaret W Margaret W is offline
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Join Date: Dec 2015
Location: Michigan
Posts: 31
Stevie-Ray, I am so sorry you're going through this. One thing that I will say is that as much as your wife has been a constant blessing to you, so you have been and will continue to be a blessing to her. You both are an inspiration and exemplars of the best that this life has to offer. I will pray for you and your wife.

Margaret
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Margaret, SAA patient diagnosed 1972; ATG 1987; moderate AA for years; hep. C from transfusion 1987; now SAA is back.
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  #5  
Old Mon Nov 7, 2016, 03:25 PM
White-Stone White-Stone is offline
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Join Date: Sep 2016
Location: Trenton, FL
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Thumbs up

Stevie-Ray,

It is sad to hear of your troubles but at the same time, your strong marriage is a shining, much needed example in this decadent society. I hope you can spend your remaining time together storing treasures in Heaven, where man can not steal them.

Kind regards, White Stone
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  #6  
Old Tue Nov 8, 2016, 04:04 PM
Stevie-Ray Stevie-Ray is offline
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Join Date: Nov 2016
Location: Michigan's Sunrise Side
Posts: 2
Thank you folks for your kind words.

My wife, the love of my life, my best friend, and my entire reason for living, died this morning. I am shattered beyond belief, and am going to seek grief counseling. Totally lost and completely unable to cope in my own house.

Goodbye, Patti my love, my baby.
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  #7  
Old Tue Nov 8, 2016, 08:59 PM
Sally C Sally C is offline
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Join Date: Dec 2010
Location: Chesterfield, Va.
Posts: 400
Dear Stevie-Ray,
Again - there are no words. The love you have for Pattie is so apparent - and I'm sure she loves you just as much.
There is nothing anyone can do to ease your pain right now. Just know that prayers are being sent your way for God to put His Loving Arms around you. I hope you find a great deal of comfort in knowing that you were there for her every step of the way - it sounds like she suffered for many years. I also hope you can find some Peace in knowing that her suffering has ended.
May God Bless and Comfort you as only He can,
Sally
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  #8  
Old Wed Nov 9, 2016, 06:20 AM
lisa3112 lisa3112 is offline
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Join Date: Jun 2016
Location: Melbourne
Posts: 48
So sorry stevie-ray. Thank you for sharing your love story.
__________________
Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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  #9  
Old Sat Nov 12, 2016, 04:10 AM
Cheryl C Cheryl C is offline
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Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 776
My deepest sympathy, Stevie-Ray. May God comfort you during this extremely sad time. 1 Thessalonians 4:13-18 may encourage you. You are wise to get grief counselling - it will help you to understand the various stages that you will go through and to be kind to yourself.
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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