~Mighty Oak Needs Your Prayers Please~
 

Asking again for you to surround him with prayers because things look very rough for him. He just got up a while ago and hugged the kitchen counter as he has been doing for some time now. I did not know he was going to pass out as he started putting his hands down like he was going to sit on the floor. I tried to catch him the best I could but he slightly hit his head and banged up his knee pretty bad. I feel guilty about this, I am just sick about it. What the hell was I thinking?? I should be watching out for things like this. I held him as he was out and kept repeating that I love him and it's okay, I love you, I am right here. I felt so helpless sitting on the floor holding him. All the time he was unconscious (2-3 min.) I kept rehearsing in my mind that this is not happening to him.This did not appear to be a seizure but who knows, I will call doctor in the morning.

On another note, tumor markers dropping slightly with the Ixempra. I know it was suggested that this be stopped (DFCI) and a new course begin but we took our chances. We still do not know if this medication passes the BBB. What I do know is that sometimes when there is this much brain met activity, it sometimes deems the BBB dysfunctional and allows medicine to pass. Double edged sword, eh?? We will do brain MRI, bone scan, CATscan and petscan for monitoring, but it will wipe him out.

So he has had 3 Ixempra infusions so far. Next treatment should include Temodar and I want to cut in half the amount of Ixempra. He has lost a total of 100 pounds on this journey and is so frail. I am sorry I cannot provide you with more positive news. I am scared and so is he and I just pray that this is not happening, not now. As I sit here and write, he sits by my side and he is singing Frank Sinatra songs outloud to me. My heart is breaking and smiling at the same time. I love him so much and I am so sad about what is happening to him.>>Believe51

marie, you and ed are always in my prayers. Constantly.
Please do not hold any guilt about anything you are doing or think you are NOT doing. The world is not within your control.

I am holding you in special prayers right now, that you and ed be wrapped in God's loving grace, just as ed is wrapped in your love.

Peace,
Chris

ants
 

Oh, Marie, I agree with Chris you should never feel guilty. You're doing so much. Remember, "an ant...can't...move a rubber tree plant, but he's got...HIGH HOPES. High in the sky apple pie hopes! I've got really high hopes for both of you. You are so well educated about your options AND have great instincts and the drive to keep on doing what you need to do.
Big blessings and loving light to you. Celeste

Thank you Celeste, I'm sure that's what ed is singing...or maybe luck be a lady tonight...

Marie,

There is no room for guilt on your journey. It is too full of love for anything else!

I am keeping Ed and you in my thoughts and prayers and lifting Ed up for healing, strength, comfort.

Dear Marie -
Lots of prayers coming your way through the night and to greet you in the morning when you have a long day ahead. We know you want to anticipate everything, but that is impossible, honey! You are a giant among caregivers, and now that you are home with your darling hubby, don't be even more hard on yourself.

Maybe it is time to ask for some additional home care so that you can have a bit of a break to do the things that matter the most to you - like just being together.

Oh Marie! It must be so terrifying to see Mighty Oak unconscious. You cannot blame yourself. You fight so much for Ed and you give him so much love. We all admire you so much.
I hope you were able to reach a doctor and that Ed is better now. He is singing Frank Sinatra songs?? What an exceptional man! You are both in my heart. Michka

Lots of love and prayers being sent to you and Ed.

Karen

praying hard
 

for you both.
Jackie (down under)

Dear Marie,
Sending you and Ed a triple strength prayer.

A prayer for your continued calm and focus on your journey. You amaze me and I HATED to see you beat yourself up in this post. You are establishing unrealistic expectations for yourself. You're doing a GREAT job.

A prayer for Ed's body to accept the new treatment and react well.

Finally, a prayer for the 2 of you to continue to feel the presence of your love for each other and bask in the warmth of it's glow.

Love....Lori

Dear Marie, You are the best wife EVER!!!! Please don't add guilt to your many feelings inside you.

I was sad reading your post and my heart truly goes out to Ed and to you. Marie, I am holding you, Ed and Joy (and Jennifer) in prayer this morning. Marie and Ed, all I can think of to say to you is that I am so sorry for what you two are having to go through. Although this may sound trite....it is meant and felt from the bottom of my heart. Please know I love you and my heart hurts for you.

Love and Peace,

Mary Jo

Marie many, many prayers going out for Ed and you as well.

You are doing such a great job.

Marie, please get some help for you to help Ed. Your battle has been long and there's more to come and you need some help, girl. As I pictured you two in your special world with Ed singing and you going from magic to worry, I know your heart is aching. And I know it would be hard to let someone else into your space with Ed. I understand that part a lot.
You're incredible Miss Marie. You give all you have to give and then give some more. You sweet thing, I'm sending some energy and magic your way from my little world here on the coast. Thank you God, for our being able to slip into that magical world when we need it most. Much love and prayer to you both, ma

Dear Marie,
You and Ed are ever in my prayers too.

Barb A.

Marie,

Thank you for being you and letting us into the most intimate moments in your fight. It's the way that you reveal each and every detail that makes us all feel so close to you and Ed. You are the best gift that Ed could ever hope for.

I'm giving my strength to you and Ed!

Marie,
Lots of love and prayers coming your way.
You are a wonderful person.

HUgs,
Gemma

Marie,

My heart aches for you and Ed this morning as I read about what you went through last night. I want you to know that there is never a day that I don't think about you two.

I hope that today is a better one.

Love, Alice

lots of love, hugs and prayers coming your way!

Marie,

Please do not feel guilty. You are such a wonderful person, wife and caregiver. I know that things are really difficult for you right now and how scared you must be. My heart hurts for you and Ed this morning. I am asking God to wrap His love, comfort and peace around you both.

Dear Marie and Ed,

I'm holding both of you in my heart. Can you feel the virtual hug, coming all the way from the Netherlands, Europe?

Am sending rays of hope and healing energy your way. May the double-edged sword do its bit and send those mets to Kingdom come!

You have been so strong and so brave and so loving! This too shall pass.

Love

Jacqueline

Oh, My Sweet Sister Marie,
My heart aches for what you are going through. Throw out that guilt because you've been one of the "heroine" caretakers in this world. You have loved, supported, sung, laughed, cried and held on to Ed with the compassion of a saint. In fact, I think of you as St. Marie...so strong with great fortitude and determination. I'm proud to call you my sister.
Hug Ed for me and tell that crooner to keep singing (I Did It My Way).
Prayers to you always,
Vickie

Yes, Marie, please do not EVER think you are not doing enough!!! You are the bedrock on which the Mighty Oak grows! Prayers to you at this tough time XOX Suzan

You and Ed are in my thoughts and prayers, Marie.

Marie - you can't anticipate every episode, and Ed doesn't expect you to... please don't beat yourself up. I am praying hard for both of you. You and Ed are phenomenal people.

~Mighty Oak Needs Your Prayers
 

Positive thoughts and a prayer are going your way from Hawaii. I think it would be a good idea to tell Ed's doctor what happened. I also think it might be a good idea to look into getting some help around the house for the both of you, so that you can spend more time together doing things you both enjoy as much as possible without having to think about daily chores.
I am happy the Ixempra seems to be helping a little.
I hope the doctor can add the other drug as soon as Ed is ready.

Marie - You and Ed are in my thoughts and prayers. You are truly an amazing person. Much love, Lisa

With my prayers and love
 

Marie Sweetheart,

You are Caregiver Of The Year for several years running. Don't be feeling any guilt. Look what you have done and continue to do! You educate yourself, you remain grounded and wise and thoughtful in all your decision-making, you celebrate for other's good news, even as you struggle with Ed's and your difficult situation. You are grace in action. A radiant Spirit. Please don't forget that!

Over a year ago I sent you and Ed a card of encouragement. It touched me deeply and I had to send it the moment I picked it out in the card store. It had a picture of a mighty oak and spoke of how strong a tree with deep roots can be, even in the midst of a major storm. Is that when you began referring to your/our Ed as Mighty Oak? I think of that every time you post and wonder. Anyway, stay strong, please. All sentiments previously sent to you still stand!!

I agree with everyone's brilliant comments above, so I won't go repeating them. Except that I HOLD YOU AND ED IN MY PRAYERS EVERY DAY AND HAVE FOR, WELL FOREVER IT SEEMS. I will rathet up my appeals to God in your name and Ed's however. I promise.

BTW, in '07 my DH developed syncope. He has 2 different blood pressures. He was collapsing into unconscious on the floor, first down -- with his hands out like he was about to sit down -- then out cold and back. Once he broke his foot. Thank goodness not his head. But, Marie, please check into this.

Paul was given meds from his cardiologist and ALWAYS, since that repeated collapsing thing, sits for a few minutes (after rising from a lying down position) to let his body stabilize. Then he slowly gets up, and doing that, plus taking the meds the cardio man prescribed, has kept him well. Just thought I should mention, as your description reminded me.

Sending you much love and a very big, long squeezing hug,
Andi

Have been and continue to think about both of you.
I would also agree with the thoughts of others who suggest you try to get some help at home, you deserve it.

Marie,

Both of you are in my prayers. As Brenda said, you cannot anticipate every episode and as many have said, there is no room for guilt in your battle. I pray god will guide you and be both your strength.

love,
shobha

Marie,

The Mighty Oak and you are in my prayers.

Amelia

Marie, Love and prayers to you and the Mighty Oak. You both have been so strong. I am honored to know you thru this website. Ceesun

Marie, you are such a kind and loving soul. I pray for you and Ed all of the time - praying especially hard for you both now.

Dear Sweet Marie,

I too send my hugs from Canada, and lots of prayers for you and Ed. "Guilty" is a word that should be stricken from you vocabulary, Marie- you have got to be the most dedicated spouse I know (along with Eric).

all the best
caya

Marie and Ed
 

I am so sorry to hear that Mighty Oak is having to struggle so..

You are such a wonderful wife & caregiver to Ed, Marie and I know that he knows this. Try to get a little MARIE TIME for yourself - I am sure that Ed would love that.

I wish that I knew you both "outside" of this site. You both sound like wonderful, compassionate people.

You both take care and keep SINGING.

Marie, all I can do is echo everyone else. You and Ed have my love and prayers. You hang in there, sweetie.

Marie,

I am echoing everything StephN said in her post. Please check into the home health care eligibility and get some help. The situation has become 'unsafe' for Ed. At least get some advice from a home health care nurse who can assess the situation and put into some safety measures. In the meantime, please know that we are keeping you and Ed in our prayers.

Thoughts with you and Ed!
 

Hi Marie,
You are among the greatest caretakers I know. I was so sad to read your post. I would say that you are under "beyond stress." Stress multiplied a hundred times!!!!! I hope that you are able to find some help. However, all the assistance in the world cannot alleviate the emotions you must feel at this time.

Please know that my thoughts, hopes and prayers are with you. Although I don't always respond to each post you make, I read them all. They are inspiring and even uplifting in a situation that is very difficult for you. I certainly wish that I could have met you and Ed at the Dana Farber conference. You are a very courageous and loving caretaker.

Again, please know that my thoughts are continuously with you and Ed.

Fondly,
Barbara H.

Ah dear Marie, another beautiful post that draws us into your moment allowing us to "see" your anguish as if we were there helplessly by your sides. Words evade me. Please know I am in tearful prayer for you and for Ed. May we have miracles.

Marie and Ed-

My loving thoughts and prayers go out to you at this time.