sometimesdilly
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posted
A very dear friend of mine will have open heart surgery tomorrow.
The surgery will involve removing all of the tissue surrounding her heart, tissue that was damaged by radiation for cancer she had 3 years ago.
Her doctors have told her the odds are high that she will die during the surgery or shortly afterwards. Best case, she only has several more years to live.
Last year we thought her problems were largely caused by Lyme, and Lyme definitely has hurt her chances of making it through this huge challenge/assault on her body.
She has two young children- 8 and 11, and the prospect of not being there for her children is causing her the most horrible pain imaginable.
Her name is Maureen, her surgery will begin tomorrow about 8AM, and will take, best case, 8-9 hours.
Please pray for her and for her family.
Dilly
[ 09-17-2010, 07:54 PM: Message edited by: sometimesdilly ]
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Praying.... God bless her and you too Dilly!
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17hens
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posted
Praying, Dilly, for peace and comfort for Maureen and her family, whatever happens.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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glm1111
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posted
Praying for Maureen and her 2 dear children.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Dekrator48
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posted
Praying for Maureen and her family.
Please let us know how she is doing.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Jane2904
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Prayers for Maureen and her children.
Please update when you are able.
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MDW005
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I am praying for them.
-------------------- God's promises mean you always have something wonderful to look forward to. Posts: 2150 | From Georgia | Registered: Oct 2009
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posted
7/15/2010, 9:50 am CA time. Praying for Maureen.
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cactus
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posted
Praying for Maureen, her family, and her friends.
Oh - and for her doctors and nurses as well, that they might best be able to help her.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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sometimesdilly
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posted
Thank you all for the prayers.
Maureen made it through the surgery, but the rest of the news is very very bad.
Almost all parts of her heart are badly damaged from the radiation therapy she had, and the amount of fluid they are pulling out of her lungs has not decreased at all.
She may only have days left to live.
Her youngest son is with me now- he spent the night and day here, and will be will us as long as neeed be.
It is heartbreaking to hear him talk about his mom. He has no idea about what is about to happen.
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Dekrator48
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Dilly,
Thank you for the update.
Thanking God she made it through surgery, now asking God for a miracle to heal her so she may live to raise her children.
Bless you for caring for her son. So heartbreaking...wish I could do more...but prayer is powerful.
Please keep us informed.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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MDW005
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posted
Dilly,
so very sorry. My heart goes out to them. I will continue to pray.
-------------------- God's promises mean you always have something wonderful to look forward to. Posts: 2150 | From Georgia | Registered: Oct 2009
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sammy
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posted
Oh Dilly, my heart goes out to you, Maureen, and her family. I'll be praying that God will keep His hand on Maureen, bless her, provide for her, give her family courage, strength, peace and comfort.
Remember, God can do what we think is impossible. Sometimes it's not what we expect or hope for, sometimes it's even better than we can imagine.
no words I know can help... but sending love and prayers
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sometimesdilly
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posted
i have to say I am angry with God.
Maureen adopted her 2 children. One, the sweet boy I have here, she adopted right after he was born, addicted to heroin.
Maureen quit her job to take care of that child, who she discovered right away could only sleep in a moving car. Maureen drove him for hours every day and again at night so he could sleep.
She adopted her second child, a little boy of 4 , that no one else wanted, who had been so horribly abused he stood little chance of ever being normal.
She has loved both those boys so well that the youngest is fine emotionally, though behind developmentally, and her older child had a chance of being OK.
Why take THIS woman?! Where is the justice in that???
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cactus
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Dilly, it's okay to feel angry. Touch it, feel it... and then let the anger go, when it's time.
Thinking of you today...
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Hoosiers51
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posted
So sorry to hear about this. I will be praying for Maureen.
This is a very similar story to my friend's mother (technically stepmother but she helped raise my friend) who died last year, in her early 40's, leaving behind 3 school-age children, the youngest of which was 7 or 8. She had cancer, and died either of cancer or complications....not completely sure. She was SUCH a loving woman, so pure of heart, and her family was her life. I rarely meet people as selfless as her. She was certainly needed here, but for some reason, God chose to take her from us.
This breaks my heart, and Maureen and her family will be in my prayers and thoughts. You are a great friend to care so much and ask for prayers for her...I am sure there are many people praying because they saw this, who haven't even posted here. ((((hug))))
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Dekrator48
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Dilly,
Unfortunately we do not always understand or know God's plan, but He does know best.
We will continue to pray for Maureen, her children and you also.
Big hugs to you!
Let us know how she, the children and you are doing when you can.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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MDW005
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posted
Oh Dilly, I am so very sorry for your pain. Like Dekrator has spoken; we don't always know Gods plan... we have to have faith!
Praying for maureen and her children.
-------------------- God's promises mean you always have something wonderful to look forward to. Posts: 2150 | From Georgia | Registered: Oct 2009
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posted
Praying for the Angel of the Lord to encamp around her and deliver her.
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17hens
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posted
Dilly,
Some of my friends are praying for Maureen. One of them asked me to share this with you...(I hope that at some point you find it useful or comforting)...
------------------
God is so gracious that he loves us unconditionally. He understands our questions why, when we cry, are angry. This is normal grief, and part of the grieving process. (Denial, anger, bargaining, depression and finally acceptance)
The greatest happiness of life is the conviction that we are loved -loved for ourselves or rather-loved in spite of ourselves.
No, it doesn't seem fair, anymore than a 3 year old child who dies of leukemia. Our days on this life are numbered, some short, some long.
An 18 century poet by the name of Rainer Maria Rilke said: "Have patience with everything unresolved in your heart and try to love the questions themselves. The point is, to live everything! Live the questions NOW. Perhaps, then, someday far in the future, you will gradually, without even noticing it, live your way into the answer."
May it be so with you and this family. Is there a husband? Who will care for the boys?
Man is born broken, he lives by mending, and the grace of God is glue. How true in all pathways of our lives! How often God has put me back together in all kinds of weather.
There are no answers or words to comfort you, though I wish I could. I do know that God will do what I can't if you give Him a chance.
Always in His timing, which is difficult, I know. God Bless.
-----------------
she also added this...
HELPING CHILDREN DEAL WITH GRIEF By Dr. Alan Wolfelt,
1.Allow children to be the teachers about their grief experiences.
2.Don't assume every child in a certain age group understands death.
3.Healing of grief is a process, not an event.
4.Don't lie or tell half-truths to children.
5.Don't wait for one big tell-all to begin to help children understand death.
6.Encourage children to ask questions about death.
7.Don't assume that children always grieve in some kind of orderly and predictable way.
8.Let children know that you really want to understand.
9.Don't misunderstand what may seem to be a lack of feelings when someone loved dies. ( some may internalize and/or withdraw )
10. Allow children to participate in the funeral.
11.Don't forget about the concept of magical thinking.
12.Remember that feeling relief doesn't mean a lack of love.
13.Realize that children's bodies react when they experience grief.
14.Don't feel bad when you can't give children total understanding about religion and death.
15.Keep in mind that grief is complicated.
16.It's best not to describe death as a loved one going to sleep, as this may create anxiety at a child's bedtime.
*** I like to think of life as having two parts: one part involves life on earth; the second part involves life in the hereafter- eternal life with God. ---------------------------
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
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sammy
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Still thinking of you and praying for you today Dilly.
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how sad praying...
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Dekrator48
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posted
Still praying for Maureen, her children and dilly.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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sometimesdilly
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posted
Thank you for the continuing prayers, Hoose and Dek and Cactus and Sammy and MDW and sk8ter and Kelle. I am still praying too.
17hens- thank you so much for that list! It has already made a huge difference.
A few days ago when both Maureen's kids were here they were SO sad and withdrawn. Then I remembered one of the things on the list, which was that kids express grief with their bodies, so I rustled up some water guns and started a huge water battle. They went nuts- they tackled me and we wrestled, we ended up having a pillow fight too, and even a mini-marshmellow battle when one of them found a bag of those and started tossing them around.
It was wild and out of control, and I realized in the middle of it just how wise that list was, because at the end the kids had not just laughed for the first time in days, but they had released a whole heck of emotions and anxiety they had been keeping bottled up.
I'm still covered with bruises from the wrestling, but am extremely grateful for your advice- it was a huge gift to those kids.
As for Maureen. She has already been blessed with a miracle, which is that she will be able to return home. Her lungs are still filling up with fluid at a bad rate, but docs were able to insert a drainage tube in her lungs yesterday, which will allow her lungs to be drained at home.
Her outlook is still very uncertain at best. In the process of inserting the tube, the docs caused one lung to collapse. The surgeon also did severe damage to her heart during the open heart surgery. Her blood pressure has returned to pre-op levels (below 60), and other basic measurements of mortality are dismal.
Maureen is an absolute first class survivor, though, and if anyone has a chance of beating the odds, it is this courageous and remarkable woman.
She called me today to tell me she REFUSES to listen to anyone or anything negative, that she is determined to make it and thinks that she will.
So, I'll keep praying and thanking God that the many prayers being offered up seem to be getting answered.
Thanks again.
love, dilly Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Dekrator48
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posted
dilly,
You are wonderful to see that Maureen's kids could benefit by silly play. Sounds like laughter and exercise (wrestling) were the best medicine.
God bless you for taking care of them.
How great that 17hens provided all of those suggestions and just when you needed them!
God is answering prayers for Maureen.
So glad she will be able to go home and receive care there.
And good for her!!! I wouldn't listen to the negativity either.
Faith is the best healer.
I will continue to pray for Maureen, her kids and you.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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sometimesdilly
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((((((Dek)))))- thank you again.
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MDW005
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posted
Hi Dilly,
This is wonderful news. You, Maureen and the kids have been on my mind. Will you be staying with the family for awhile when Maureen comes home?
Sounds like the children are blessed to have you there. I will continue to pray for you and for them.
-------------------- God's promises mean you always have something wonderful to look forward to. Posts: 2150 | From Georgia | Registered: Oct 2009
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sometimesdilly
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posted
MDW- Thank you, sweetie.
Maureen's adult daughter will be taking care of Maureen during the day after she comes home.
It is me who is blessed to have her two children in my life. They teach me every time I am with them that love is what keeps people alive and gives us all a chance for grace.
Be well. dilly
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sammy
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posted
Praise God! Thank you for the update Dilly. I'm so happy and relieved to know that Maureen will be going home soon. She will be able to rest and recuperate better there.
It sounds like she's pretty special woman. It's good to know that she's got you Dilly and a strong loving family to support her through this fight.
So lets keep praying and see what miracles come next! Posts: 5237 | From here | Registered: Nov 2007
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randibear
Honored Contributor (10K+ posts)
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posted
i truly hope she makes it.
makes my problems seem small and insignificant.
i will think of her and her children and wish the very best for her.
do you think a small care package might cheer her and the children? sometimes getting a little mail that's not a bill or something cheers me up.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Carol in PA
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posted
Dear Lord, please bless this woman, Maureen, who has given so much of herself.
Please bless these children, whose lives would not have been as good if Maureen had not taken care of them.
Please bless Dilly for what she is doing to ease their pain and provide some normalcy.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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sometimesdilly
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posted
Maureen is still here. Last word is that the tube in her lungs is what is keeping her going, that at some point her lungs will scar over and the tube will have to be removed, or, the tube will have to be removed sooner to prevent infection.
Either way, at the point when the tube has to be removed the clock will start ticking again unless a miracle happens and her heart starts working better.
Without the heart pumping better she will again be in end-stage congestive heart failure with a couple of months left to live.
For today, she is happy to be alive and continues to refuse to think about anything that comes next.
She already was given the miracles of surviving her esophogeal cancer 4 years ago, then of living through her open heart surgery, then of making it home.
Not sure if its asking to much to pray for yet one more miracle, but I am anyway...
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Hoosiers51
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Praying for this remarkable woman, and her children, and her family. And for you, dilly. I'm sure nothing could replace what you are doing for her kids. (((((hug))))))
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God doesnt have a limit on miracles. Im praying so hard for this family. Shes blessed to have such a wonderful friend in you. Stories like this hit me close as i lost my mother to lung cancer when i was 12. I still miss her. I admire maureens courage and determination. Makes my problems pale in comparison. Will keep praying....
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Maureen,her family and of course you will continue to be in my prayers. This is good news to hear today. I hope to hear more good news in the future.
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17hens
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posted
Dear Dilly,
Thank you for the update. It's wonderful to hear such good news. There are many of us praying for Maureen.
If the Lord decides to take Maureen home soon or give her more time, I think either one is a miracle. A gift of Love. Maybe not the kind we would prefer.
Dilly, the same praying friend who asked me to share the above "Helping Children Deal with Grief" has asked me to share the following.
I hope by sharing these, I have not overstepped any boundaries. If so, please forgive me.
----------------------------
DEATH By JOSHUA LOTH LIEBMAN
I often feel that death is not the enemy of life, but its friend, for it is the knowledge that our years are limited which makes them so precious.
It is the truth that time is but lent to us, which makes us, at our best, look upon our years as a trust handed into our temporary keeping.
We are like children privileged to spend a day in a great park, a park filled with many gardens and playgrounds and azure-tinted lakes with white boats sailing upon the tranquil waves.
True, the day allotted to each one of us is not the same in length, in light, or in beauty.
Some children of earth are privileged to spend a long and sunlit day in the garden of the earth.
For others the day is shorter, cloudier, and dusk descends more quickly as in a winter's tale.
But whether our life is a long summery day or a shorter wintry afternoon, we know that inevitably there are storms and squalls which overcast even the bluest heaven and there are sunlit rays which pierce the darkest autumn sky.
The day that we are privileged to spend in the great park of life is not the same for all human beings, but there is enough beauty and joy and gaiety in the hours if we will but treasure them.
Then for each one of us the moment comes when the great nurse, DEATH, takes man, woman, the child, by the hand and quietly says,
``It is time to go home. Night is coming. It is your bedtime, child of earth. Come, you're tired. Lie down at last in the quiet nursery of nature and sleep. Sleep well. The day is gone. Stars shine in the canopy of eternity.''
---------------------
DAILY SURVIVAL KIT FOR SERIOUS ILLNESS BY THOMAS L. MCDERMITT
1. Today, I am going to try to live through this day only, and not dwell on or attempt to solve all my problems at once; just focus on the piece that is today. I can do something for several hours that would be difficult to even think about continuing for several months.
2. Just for today, I am willing to accept the possibility that there is a purpose to this suffering; that it can be a source of meaning and growth for others, and myself though I may not always recognize the ways. And it seems possible that this suffering will not be in vain, because of what may be some kind of existence beyond.
3. Just for today, let me remind myself that I am basically a worthwhile person, worth loving, despite my faults and limits. I deserve the efforts of others to help me through my illness.
4. Just for today, I want to be aware that it is all right to want too much from others at times. Illness brings out and intensifies the small child in all of us. And if I feel hurt when those who care for me cannot be there, it may help to remember that they have needs, frailties, and limitations of their own. A lack of response does not mean that they are personally rejecting me.
5. Today I may feel the need to complain a great deal; I may have little tolerance- I may cry; I may scream. That does not mean that I am less courageous or strong. All are ways of expressing anger over this mess, of rightly mourning my losses. Endurance itself is courage.
6. It is my life at stake now. So maybe today I can allow myself to be a little less concerned about the reactions or impressions of others. Maybe I can allow myself to feel a little less guilty or bad about what I did not accomplish or give. Perhaps today I can be a little gentler toward myself.
7. Surviving this is all so difficult. At times it seems impossible- that I have had enough. Down the line I will know if and when I have had enough, when I cannot push the limits any further. I will have the right to choose to stop, without feeling that I am ``giving up.'' But today, I think I can deal with this illness. Sorrow runs very deep, but I think I can rise again.
8. Just for today, maybe I can give healing ``the benefit of the doubt.'' The drugs are powerful; the natural healing capacity of my body is powerful. And who knows, perhaps there is healing power in my will to struggle, and in the collective love and will of others.
9. Just for today, perhaps I can take heart that we are all connected. And I may still have some things left to contribute to the family of man; some light to add to their light. Even now my endurance (however imperfect) is a gift, an inspiration for others in their struggles.
10. It seems reasonable that there is a season for everything, and a time for every purpose. Pain, weakness and exhaustion may distort my senses and spirit. Today, however, I can at least find some hope in nature's way, if not in some master plan. The chances are fairly good, and it seems worthwhile to hope that I will have some cycle of wellness yet.
**** Written by a person living with Metastatic Cancer
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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sometimesdilly
Frequent Contributor (1K+ posts)
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posted
thank you most especially for your prayers sustaining Maureen, ((Hoose))), Misfit and Carly.
Hens- You haven't overstepped any boundaries.
Part of what is most remarkable about Maureen is that she will absolutely be at peace when it is time to die.
She is not afraid of death at all, knows she'll be going home, and knows she will have done everything she possibly could to stay here for her children.
She's clear that she would have preferred to be here for them until they grow up, but knows already that won't happen, no matter what comes next.
It is not Maureen but those of us who love her who are not serene right now. But, one of the greatest gifts from Maureen is that she is teaching us grace, and that love sometimes means not just letting go, but feeling happiness while letting go--- happiness and gratitude that we have right now with her, not sorrow that we inevitably will lose her light.
Thank you and you all for your prayers-- I know Maureen is being lifted by them.
love, dill
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Dekrator48
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posted
Praying that Maureen and her children are surrounded by the wonder of God's love and God's peace every moment of every day.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by sometimesdilly: Without the heart pumping better she will again be in end-stage congestive heart failure with a couple of months left to live.
Ohhhh....she may die from the congestive heart failure. Okay, that is something that you can work on.
Congestive heart failure can be treated with CoEnzyme Q10. CoQ10 is usually plentiful in the heart, and is needed for the mitochondria in the cells to do their work.
Dr. Stephen Sinatra has written books about this. You can google for information. BTW, this has not yet been accepted by the AMA.
He found that when he began giving his CHF patients CoQ10, they improved dramatically. He noticed that he wasn't getting those middle of the night emergency calls from them any more.
From what I remember, your friend could take 400 mg daily, which also happens to be helpful for cancer.
CoEnzyme Q10 is present in all cells, but more plentiful in the heart. Statin drugs that are given to reduce cholesterol will also deplete CoQ10.
I found good prices for this at iHerb. There is also a form of CoQ10 called Ubiquinol that is better, but they charge twice as much for it. http://www.iherb.com/CoQ10-100-mg
Disclaimer...I am not a physician. You should research this yourself, not just depend on the recommendation from a friend.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
17hens...your post touched me and made me cry. I so admire maureens courage. A true testament.
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17hens
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posted
with Maureen and Dilly in the middle.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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2roads
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posted
What a strong character she is and an example to us all.
-Forming a second circle around the first one.
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Carol in PA
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posted
Prayer is wonderful...but supplying the heart with the nutrients it needs to make the energy it needs to beat, will greatly improve her quality of life.
Better heart function = more oxygen to the cells = more healing = less fatigue
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sometimesdilly
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posted
I only have a few minutes, so one quick reply to you, Carol,until i can be back tomorrow.
Maureen's congestive heart failure is structural. Her heart does not have enough room to expand, and so doesn't and can't work properly.
It doesn't have enough room to expand because the tissue surrounding and near it is horribly thickened and rigid from the radiation treatments she required to survive cancer 4 years ago.
Her open heart surgery was to remove the tissue closest to and surrounding her heart, which they did, in order to give her heart that room.
The surgery hasn't worked, and one reason is that when they opened her up they found that much of her heart itself was scarred from the radiation, further reducing its ability to move as it must.
No medicine or pill can save her. A heart transplant could, theoretically, but it is extremely unlikely that she'd be considered as a candidate because of her recent cancer, and because she is unlikely to hold on until a heart became available.
Those are just the brutal facts of what is going on. I have moved past wishful thinking, see plainly what is happening, and as I've said, feel blessed that she is still here today and likely to be here tomorrow too.
Prayers are everything now, most of all for Maureen to stay at peace enough to be able to fully live for the time she has left.
Back tomorrow.
love, dill
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merrygirl
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Praying...
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sometimesdilly
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(((((HUGS TO YOU ALL, AND THANK YOU ALL FOR YOUR PRAYERS)))...
did a sleep study last night and barely got sleep so am missing in action today, but have NOT missed the ongoing concern and prayers. You all are all the best.
hugs, dill
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sometimesdilly
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I spent a few hours with Maureen yesterday She looks terrible.. is literally down to skin and bones.
Maureen now refuses to talk about what comes next, or about her condition at all, which I can easily honor, for every reason.
At the same time, much of conversations with her take place in the almost-past tense.. as in, Maureen talking about how her children will remember her.
She is in pain and exhausted, which most of us can relate to for own reasons, but she seems in a far more distant place than I can recognize.
Does anyone else have experience being with a dying friend who wouldn't/didn't want to talk about what was happening?
All I care about in this situation is being the best possible friend to her. I am very afraid that my Lyme-related ditsy-ness and cognitive/emotional handicaps will make me get it all wrong--there is little time left to get it right, and soon enough there will be no time at all to say I'm sorry if I got it wrong.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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I don't have the personal experience to give you the answers you seek, so I'll keep it short:
You can't do it wrong. You're there. With her, For her. You're a friend.
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sometimesdilly
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Carly- thanks for the support and vote of confidence, but I've already messed things up for her family once, when she was still in the hospital. That one still hurts and scares me.
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littlebit27
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Dilly- Not sure how you messed things up with her family-I think I read all of your posts in here but maybe I missed something.
I don't have experience with a dying friend who didn't want to talk about it. All of my friends died suddenly, one at 20 because of a heart defect.
But my grandfather passed and we were at his bedside for his last few days, I was 14. All we did was talk to him. Let me know we were there and loved him. We told him it was ok to go, because he wasn't ready.
Your friend sounds amazingly strong. I guess I can imagine not wanting to talk about it if I was in her shoes, especially with young children who will be left behind.
My only advice is to be there for her, whatever she needs or wants, do what you can do to get it accomplished. Let her open up about dying when she wants to. Until then, just be there for her, to listen, to talk, to do chores she can't, take care of the kids, whatever she wants.
I pray for another miracle for her, it is so sad whenever wonderful, amazing people are taken from us yet murders and rapists get to live long lives (in prison maybe, but alive nonetheless).
daisyrlb
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Dilly, May God give you wisdom as to what to say and not say. You are such a blessing to Maureen and her family. Thank you for keeping us updated.
Prayers for God's peace that passes all understanding. May His eternal love be sensed. He is there in the midst.
Posts: 2188 | From Oklahoma | Registered: May 2008
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Just found this thread - please add my prayers for Maureen and her family. May they all feel God's peace.
Posts: 581 | From CT | Registered: May 2008
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You are doing an amazing job at helping your friend.
I know she does not want to talk about it, but HOSPICE is the organization that can help her and you put it all together.
If you reach out to hospice, if nothing else, they will help you with ways to help her. A quick call to them may get you a social worker who can coach you in some of your questions.
It is agonizing to watch, but you will have done your best.
Prayers for all of you, Wizard
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sammy
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Dilly, remember Maureen loves you for who you are. You don't have to try to do anything special. Just be you, be real, and be there. Love on her all you can. You are a true friend.
I'm sending you extra hugs and prayers. I wish there was more I could do.
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sometimesdilly
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This is what happened weeks ago, when Maureen had just had her surgery.
I had been speaking with her spouse daily, often multiple times a day. It was mentioned that so many people had been calling, it would be appreciated if I would keep Maureen's friends updated by email. So I was doing that.
When the news came that the surgery had not worked, that Maureen's time left was weeks or months at best, I emailed that too, and let everyone know that Maureen did NOT want her kids to know how bad things were. I put the part in about the kids because many of Maureen's friends have kids that are in touch with Maureen's kids, and I wanted to warn parents not to talk about Maureen's condition in front of their kids, just in case.
Well, the day after my last email went out I got a call from Maureen's spouse, and I was yelled at and told what I had sent was "devastating" to Maureen's whole family, and "inappropriate, however well-intended."
I can't begin to describe how awful I felt during and after that call, and still do. I thought I was doing exactly what I had been asked to do, that I had been helping by providing news so that Maureen's family wasn't overwhelmed by phone calls, and that I had honored Maureen's desire that her kids not know by making sure her friends didn't accidentally let the truth slip out in front of their own kids.
Even leaving everything else aside, the possibility that I had misunderstood such an extremely important request and situation made me (and still does) feel like that I cannot trust myself to do the right thing when it matters most, which is as upsetting as it gets.
I do get it that the situation now would be difficult for anyone to navigate. For example:
I saw Maureen today. She said that the fluid in her lungs has doubled in volume in the past few days, and that the tube in her lungs will will have to come out no matter what within a week. She then said- well, where will the fluid go after that?
I honestly don't know if she is in complete denial at this point and has convinced herself that there is a possibility the fluid will somehow magically disappear, or if she knows what is going on and is preparing herself in her own way for dying.
I can't and won't know which it is, because she has made it clear that no one is allowed to talk to her about any bad possibilities.
What is anyone supposed to say, then?
Also today Maureen said that for the past 2 weeks her spouse has been having multiple phone conversations and exchanging dozens of text messages and emails daily with someone at work, and that everytime maureen comes near, her spouse erases the messages/hangs up the phone.
Maureen thinks ..maybe an affair? Maybe her spouse is "tired of taking care of her, and wants someone else who is easier?"
I'm thinking- maybe her spouse is devastated knowing how little time Maureen has left, and that Maureen's refusal to discuss that reality means that her spouse is deprived both of the ability to comfort and support AND be comforted and supported during what has to be one of the worst times possible in any marriage.
But-- since my hands are tied and my mouth is bound shut too, how can I reassure Maureen by telling her of this other possible (and more likely) interpretation?
I think I would be challenged by this situation even if I was 100% OK. As it is, I feel very much at a total loss about what is best to do or say.
Any insights would be greatly appreciated.
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lymednva
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I can't imagine being in your shoes, Dilly. You are right that her hubby needs to be able to work through this now, as well as later. It's a lot easier when the patient is aware of the situation.
Are you sure she doesn't want to know anything? I can't imagine not wanting to help prepare my kids for my approaching death.
I know of younger women who have died from cancer who were able to well-prepare their school-aged kids and that made it a bit easier.
The moms felt they had done what they could, when they could so didn't carry around any guilt, either.
I'll keep you, and her, and her family in my prayers.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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sometimesdilly
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hi ((((diva))))-
Yes, I am absolutely sure Maureen doesn't want to know , and that she does not want her kids to know.
Personally, I think that her kids have a right to know, and that they will be more, not less devastated when Maureen dies from their point of view "without warning,"and without the kids having a chance to tell her whatever is most important to them to say-- or to ask.
But, that's just my opinion and how I imagine I would handle the situation. I'm not in her shoes, though, so I don't know for sure what I would do, and either way, I can't and won't judge her or be critical of what choices she is making.
Her choices are what they are. She may change her mind and be more forthcoming tomorrow or the next day or in a week.
The question for me, given what her choices are as of now, is how to be supportive and loving when nothing of reality can be discussed, and her silence is building layers of other problems and additional pain?
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Dekrator48
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Dilly,
I'm so sorry that your good intentions were misinterpreted.
Since your hands are tied, I would just pray for her, and with her if she will allow it.
Lord, please help Dilly to feel comforted and to help Maureen feel God's love and comfort also.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Dilly a couple of years ago good friend of mine went thru something like you are experiencing.
The mom had cancer for a number of years and managed to fight it despite the odds. The kids had no idea. It wasn't til the last month or two that they even found out their mom was very sick.
There were only a few weeks from when they found out to when she passed. Of course they were devastated.
I wondered why she didn't tell them years ago about the illness and why they didn't know til almost the end.
I think that deep inside after fighting so long and so hard she still believed that she could once again bounce back. She and her husband didn't want to have their kids thinking about this years beforehand. Why burden them unnecessarily when hope was still within reach and time and again she beat the odds.
What mother ever wants to be in a position to tell her young children that she might be gone soon?? There is no comfort or solace in this for the mom or the kids or the dad.
I think that in situations like this hope and prayers jump in along with whatever fight is left.
That is what maybe stops a parent from talking about what might/could/will happen. There is no such thing as being prepared for death especially when a young child loses a parent. It's a profound loss whether a child knew from the beginning or found out at the end. Who can say what is best?
As you say you are not in her shoes. Neither was my friend.
My friend had an awkward relationship with the husband. Your friend's husband likely lashed out at you because of the personal hell he is going through.
You ask how can you be supportive. By just being there for your friend you are being supportive. Don't force discussion with her regarding her situation. Just stay by her side when you can and talk to her about the good times you had together ("do you remember when"), how much you love her kids ("that little guy of yours is such a charmer") Talk to her about how bad hospital food is. Tell her about something going on in the news.
If you are able, cook a big meal and bring it to their house. Go grocery shopping for them. Tell the husband you're coming over to spruce up the bathrooms or clean out the frig.
And about the husband....remember that his reaction is coming from the awful place he is in. Overlook it. Just be there for your friend and her family. You don't realize how appreciated that is.
I am praying for you, your friend, her children, her husband. May that family be blessed with a miracle.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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Pinelady
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Prayers for you and the families.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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sometimesdilly
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In case anyone has been wondering about my friend Maureen...
She is still alive. She had her lung drainage tube removed a week ago because it was too painful; turns out that's because her lungs had scarred over.
Her heart is still malfunctioning significantly. Among other defects, her tricuspid valve is leaking big-time, which is causing a cascade of other problems, but......
She is still alive, and it appears that her heart surgery-- and a massive number of prayers--have bought her at least months more time.
Thank you so much to everyone who has cared about and prayed for Maureen.
Witnessing what Maureen has lived through over the past few months of life has changed the lives of more than a few people. Every day she lives is a gift to her family and to those who love her, and so what we feel most of all these days is extremely grateful.
thanks again- dill
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thank you for the update, I will continue to pray for her and her family.
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daisyrlb
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Dilly,
Thank you for the update. No one knows when a person's time is up...not even doctors.
It is so wonderful she and her family have had more time together. What a blessing. Extremely grateful is always very good...every second of everyday...for we only have this second!
May God be honored and His love sensed by all.
Just said another prayer for Maureen...and you.
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Thank you for the update. I am glad to hear about Maureen. I will keep her in my prayers.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
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17hens
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Dilly, what a good friend you are. Thank you so much for letting us know about Maureen. She will be in my prayers.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
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sometimesdilly
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thanks for your support and prayers, (and hugs to you all) mom2, Daisy, Alana and Hens.
dill
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