~Mighy Oak Update~August 10,2009
 

Well, he is still having some problems getting the tests done. Ed agreed to not get admitted and try these on his own because he was not assured that tests would take a day or two. We went for a brain MRI on Thursday and the person doing the procedure came out with him and said he cannot do the test. He was gasping for air and could not breathe, I can not say for sure this was an anxiety attack. This has happened at home several times but the added pressure of what is happening in the brain brings new worries. He was clammy and needed to sit for a while before leaving.

He has had boughts of confusion that are not always apparent to him. Of course he is not allowed to go anywhere without me. I am so worried about someone taking advantage. I must admit between the confusion and him being almost completely deaf, he just keeps getting cuter and cuter. His blood pressure is great, appetite so-so and he gained two pounds. The tumor markers have been cut more than half. I am so curious to find out if the Ixempra passed the BBB.

Our plans are to get these tests done and restart a new chemo. We have an appointment on Thursday with OncoMan to trudge forward. All in all, his attitude is that of calm. He started getting some headaches, mild ones but we cannot say why. Ed has some things to get in order and I know that this is bothering him. The more I watch this man the more I love him. He has not passed out since that day and balance is a tad better. The neuropathy is extreme and he walks in a very sad manner, he has a cane but does not need it for the house. I cannot express how skinny he is, it saddens me deeply.

My heart literally hurts as I try to stay strong and focused. I have been having issues with holding back tears and catching myself before I am totally in a funk. Our Granddaughter has been over and although Ed slept most of the day, he was content having a visit. She told me how I always cheer her up and that the more she knows me, the more she loves me. What is better than that? I was just about to fret about being jobless in RI's 12.4% unemployment rate and....

Rexin Rose called. She told me that she is about to go public. Rose told me she had formed her Board of Directors and was moving forward as planned. She also told me to take care of what I needed to take care of and love my husband. Today's call was to assure me of a secured job when I am ready. I can collect until first week of October before applying for extended benefits. I technically still have to look for work and let' face it, I took a huge hit in the pocket now that I am collecting, especially because I am taking taxes out. By the end of the year we are looking to hire a total of 200 people. Things are falling into place.

I know I have been distant lately. I feel like I am going insane at times. My migraines are back thanks to summer and my body is bad. The neck and back are in and out of service.

But he is still here and so am I. I do not want to miss a thing, a split second of loving him. I am still packing hope and Ed still has his battle armor on. We have just begun to fight, set back but not giving up. And I just wanted you all to know how better I feel talking to you this early am....hugs to all.>>Believe51

Re: ~Mighy Oak Update~August 10,2009
 

Hard & brave times Marie - for you & Ed. Much love to you both.
Blessings
Hermiracles

Re: ~Mighy Oak Update~August 10,2009
 

Marie, my heart goes out to you and Ed. You are so brave and so loving. Ed is so lucky to have you by his side. I wish things were easier for you - like this horrible disease would just go away!!! - and I pray that you'll get some good news when you see the onc on Thursday.

Re: ~Mighy Oak Update~August 10,2009
 

Hi Marie,

I was so happy to read your update this morning. My heart is always with you and Ed and I'm always wondering....what's going on.

Prayers continue..... as does love.

Gentle hugs,

Mary Jo

Re: ~Mighy Oak Update~August 10,2009
 

Hi Marie,

Thank you for taking the time to update us. You have many praying for you to have strength and comfort. I wish that we could make it all better.

Love, Hope, Peace, Carolyn

Re: ~Mighy Oak Update~August 10,2009
 

Marie,

It is good to hear news from you and Ed. He is still in the fight. I pray that the treatment has helped.

I'm so happy that you have a job waiting. Money woes on top of everything else is so stressful.

Thinking of you today.

Re: ~Mighy Oak Update~August 10,2009
 

love, hugs and prayers for both of you!

Re: ~Mighy Oak Update~August 10,2009
 

Marie, you and Ed are working so hard and fighting so bravely! But it surely must take your energy and hope and drag them around a bit. I think sometimes a good ol' cry is the bestest medicine of all. I watch movies and cry and cry sometimes...life is difficult and changing and stressful BUT also filled with adventure, love, challenges, excitement and the most glorious friends. You've got it all right now my girl and it's stretching you from hither and fro. Please accept our gifts of love, prayer, friendship and energy for you right now. You're one terrific rascal, Miss Marie! Love never fails....ma

Re: ~Mighy Oak Update~August 10,2009
 

Marie, thanks for the update. You and Ed have been on our minds. I feel like we are in a similar fight. Joy has lost so much weight, in so much pain, has no quality of life, yet we keep on fighting and getting through one day at a time. Sending hugs and much love your way. Take care of yourself! Love Jennifer and Joy

Re: ~Mighy Oak Update~August 10,2009
 

"All we need is love!" You and Ed are inspirations to me. You love so deep, fight so hard, and care so generously. You're doing great. You should be proud. Don't forget to do SOMETHING for yourself. Take at least an hour of your day to recharge yourself. I love you guys.

Re: ~Mighy Oak Update~August 10,2009
 

Sweet Marie,

Sending positive thoughts, prayers and big hugs to you and Ed.

all the best
caya

Re: ~Mighy Oak Update~August 10,2009
 

Marie and Ed, holding you both in my prayers and sending lots of love your way.

love,
shobha

Re: ~Mighy Oak Update~August 10,2009
 

Hi Marie, and Ed...thank you for taking the time to update us this morning. I know what a struggle it must be to have to put things into words. You are an amazing woman, Marie, as is Ed an amazing man, to be going through this with such a positive attitude. Your Karma- meter is off the charts. Even though we have never really "met", I think of you two often during my day with love and hope. XO Suzan

Re: ~Mighy Oak Update~August 10,2009
 

Marie and the Mighty Oak,

Glad to see your post. You both are in my prayers.

Amelia

Re: ~Mighy Oak Update~August 10,2009
 

Marie,
You seem so weary - and of course with good reason. Yet you stand and keep going. You are so amazing, I am filled with gratitude that I am lucky enough to know you and love you and bear witness to your great love for Ed.

It is encouraging that Ed's tumor markers are continuing to decrease. That seems to be one of several tiny hopeful signs in your report. That you are "curious" about what's going on in the brain is a fair understatement I am sure. The next time Ed tries an MRI could you ask to be in the room with him? Just feeling your hand on his could be very calming.

Marie, you know that you and Ed are in my constant prayers, and you are one of my first waking thoughts every day. Take care of yourself, as well as Ed.

Much love
Chris

Re: ~Mighy Oak Update~August 10,2009
 

Dear Marie, am deeply wishing for some sort of relief and comfort for you. Of course you must be exhausted from worry and stress. You are one of the strongest women I have ever known but even superwoman need physical and mental rest.
May tomorrow bring some encouragement to you and Ed.
Hugs, and prayers for you and Ed,
Diane

Re: ~Mighy Oak Update~August 10,2009
 

Hello Marie,
I'm so glad you were able to send an update....both you and Ed have been in my thoughts and in my prayers. Here's hoping that the Ixempra did pass the blood brain barrier and that tumor marker numbers continue to improve.

Good that there is a job available for when you are ready too....Sending much love to both of you.

Barb A.

Re: ~Mighy Oak Update~August 10,2009
 

Hi sweetheart! You and Ed are always in my thoughts and prayers. Like others have said, please try to take a little time out for yourself when you can. You need it to regroup. Love, Bill

Re: ~Mighy Oak Update~August 10,2009
 

Marie, I don't have any advice but wanted to send huge hugs to you and please know you're both in my thoughts:) xx

It'll work out:)

Re: ~Mighy Oak Update~August 10,2009
 

Marie,

So glad to hear from you. Please know you and Ed are in my prayers and we are always here for you.

Re: ~Mighy Oak Update~August 10,2009
 

Marie,

As always your courage brings tears to my eyes. I pray you are showered with the many blessings you deserve. Squeeze brave Ed's hand for me and know I am praying for you both.

Re: ~Mighy Oak Update~August 10,2009
 

Marie,

I was having computer problems.
I am sorry to know that Ed had to stop Ixempra, but it is good news that the tumor markers are cut in more than half. During my 9 months on Ixempra, my tumor markers barely came down. I am praying that Ixempra will cross the BBB and that you both will have good news with the MRI results when Ed will be able to do it. I wonder if his short of breath is caused by Ixempra, because I also have short of breath lately.
I think Nalvabine is a very good drug, I was on it with Herceptin for 18 months and my liver mets disappeared, and my lung mets almost disappeared as well, they could hardly see them on the CT scans. This drug was very easy on me. Usually I had very mild nausea on the first few days after treatment, and my medication was food, after I ate, the nausea was gone. I did not feel tired at all, I felt like I was not on chemo, only at the end of the 18 months is that I felt my legs very heavy, and it was hard for me to climb the stairs of my house. My hair grew back while on it. I remember having mild neuropathy at that time, but my doctor said it was from Taxotere that I had before. I pray that Nalvabine will be as easy for Ed as it was for me.
If you have any more questions, please count on me.
Sending healing prayers for Ed, and prayers for your peace as well.
God bless both of you.
Love,
KarlaV.

Re: ~Mighy Oak Update~August 10,2009
 

Marie,

I continue to think of the two of you daily....thank you for the update. I also still hope for a blessing for the two of you.

Re: ~Mighy Oak Update~August 10,2009
 

Re: ~Mighy Oak Update~August 10,2009
 

HEY BIRTHDAY Twin,

You just wrap those loving arms around Ed, put on some Frank sinatra tunes (or Dean or Sammy) and remember I love you both. I walk with Ed on that journey in so many ways and have watched my husband fall to tears in the midst of his unwavering strength. Actually, those tears are a sign of strength, great strength, the very strength you've both shown all along.

I love you,
vickie

Re: ~Mighy Oak Update~August 10,2009
 

Marie...
you and Ed are always in heart and in my prayers,
Gentle hugs to you both,
Marcia

Re: ~Mighy Oak Update~August 10,2009
 

marie
Stay strong and tell Ed to do the same.....you are a testament to true love, we admire your strength and tenacity...many prayers going out for both of you!

Re: ~Mighy Oak Update~August 10,2009
 

Marie ~ reading this just brought tears to my eyes. You are such an amazing lady and I know Ed couldn't be in better loving arms. You two are so special and much loved.
Hugs ~ Ruth