For Marie

Patty F · 07-14-2009, 06:59 PM

Marie
I was just wondering how Ed is doing. You are both in my prayers.

Bill · 07-14-2009, 07:03 PM

I hope all is well, sweet Marie.

suzan w · 07-14-2009, 07:03 PM

Thanks for this Patty, as I was just browsing the board and thinking about Marie and Ed too. I really feel like I know them...because I do, through this site. Throughout the day I find myself thinking about all of us here and it gives me great comfort to log on and check in. Peace and love! Suzan

ammebarb · 07-14-2009, 07:32 PM

I'm also thinking of Marie and Ed daily, and keeping them in prayer.

Barb A.

alicem · 07-14-2009, 07:57 PM

Marie and Ed,

You are in my thoughts night and day.

Love, Alice

juanita · 07-14-2009, 08:44 PM

keeping both of you in my prayers!

Believe51 · 07-14-2009, 08:47 PM

He is still recovering from the last treatment on 6/26 and has chosen or more like forced to stop this chemo. He has severe neuropathy, it was made worse with this drug, and again it is painful for him. Having problems walking through the house between that and the bone issues. There is a cough present with a phlegm, not quite 'sick' in color now, but no fever or infection. Ed has the taste of metal still in his mouth, appetite is getting a little better, eating solid foods now. Weight is now a staggering 176 and this sucks. Ed is fatigued and is going to have bloodwork tomorrow to check for a series of answers. Our doctor is out of town and I hate to disappoint him but....Ed needed a catscan on Monday and could not go, he has a brain MRI Wednesday and cannot make it, instead he will go for bloodwork. He has a bone scan next week and we need these all completed before the 29th. Decisions will have to take place there. Ed will not be going for the next treatment, I know it will kill him. This is a wonderful drug but for frail people like Ed and such, they do not bounce back from it like the other treatments. He has been on 4 regimes and his body is not up to the fight like before and he can not get past the Ixempra. There have been a couple of times that he has gasped for his breathe and could not do it, and only passed out that one time. This does sadden me because we are unsure if this passes the BBB and the tumor markers are dropping for him. Oh well, if he says stop because this will take him out I have to listen. Ed knows how much he can take and push himself. Please do not let me scare anyone with this drug, Ed has lost consistently 100 pounds since 9-06. This drug he just cannot keep up with. There is still a fight in his eyes and a desire to conquer....and then sometimes when he blinks it is as though they look tired and defeated. I have done alot of crying lately and it is something that just happens. I cannot control it. The talks of death and such overwhelms me alot and I have to take it in small batches now. I feel suffocated and sad.

On another note, my physco grandmother spitefully raised my rent $100 per month. She has always treated us weird but ever since he has gotten ill it is severe. Ed is of no service to her anymore, dispose. You know if she said the economy is bad and I need more income I would understand completely. She thinks we got money from my Mother-in-Law and wants a piece and I know this for a fact, truely spiteful and crazy.I am angered by the way she is anything but my grandmother!! Wait until I tell her that the money we got went to a casket and beautiful headstone. Our life is none of her business and I cannot stand how she does not care he is fighting for every day and I am still jobless. Spiteful troll! I cannot control what feelings I have now and she puts more on me. Any thoughts or feelings to help me here? I know I have complained about pyscho before and I am so sorry to rant about her again. I am embarassed that people like her exist...please do not think badly of me for this, try to pray for me.

Hahaha, aren't you glad you asked about us??(lol). I do feel better and sorry to ramble but can she not just leave us alone? This is tough enough for me, living is tough enough. My boy lays in his chair in and out of sleep, he is slowly coming out of this. I am so uncertain what to do from here. Believe it or not, Adriamycin was also mentioned....uhh, noo! I trudge forward hoping we can get these tests done soon.

Thanks pals, I was so happy to come here and see this post. To look around and know how loved we are. I cannot tell you how much you all mean to me but I think you know. Thanks for making me never feel alone and to always feel loved. Your love and support has allowed me to move forward with courage and fight!! This post made me smile>>Believe51

jhandley · 07-14-2009, 09:12 PM

Dear Marie
I am lying at home in bed with the flu and you put it all in perspective for me. Just try to get through each hour at a time. And remember what goes around comes around so your psycho Grandmother wil get her come uppance in the end.

Jackie (down under)

Faith in Him · 07-14-2009, 09:21 PM

Marie,

I continue to pray that the right answers come swifty for Ed. I feel so terrible that you have to endure so much. I wish I could make it better for you. I do not understand your grandmother and hope that she can find it in her heart to show more compasion towards you and Ed.

Please know that we love you both and it is perfectly ok to rant. We're family now.

Tonya

ElaineM · 07-14-2009, 09:33 PM

Marie,
Feel free to share your concerns with us anytime. I hope all Ed needs is a little break, so his body can get a little stronger for the next part of the journey. Maybe his doc will be able to suggest some more options the next time you guys see him and/or he will get good news from the blood tests.
Hope is alive !!!!!!!
Shame on grandma !!!!!!!

Mary Anne in TX · 07-15-2009, 05:30 AM

Rant on superstar! Ed is feeling the pitts and Psycho applies the stress! Little does she know that each time she attacks, the steel in Marie is strengthened! Go Marie.
Our own special psycho arrives in town on sunday, so I'm doing "brain preparedness" each day! Gary's mom is at the end of her long journey and sister arrives to tell us all we're doing and have done wrong!
Somehow, it will work out fine. Just know it will.
Marie, you and Ed are my daily reminder of the power of love in the midst of battle. Day by day your love and character is tested and day by day you are a champion!
Much love to ya, girl. Your journey blesses me with the choices you make and the love you give. ma

Mary Jo · 07-15-2009, 05:52 AM

Dear Marie,,,,,

I'm so happy that you decided to share your heart with us also about your grandma (almost hates to call her "grandma" that sounds too nice of a word - sorry

) You need to get those feelings out too and who better than to us who love you. Plain and simple...she is wrong....and unkind (it took a while to come up with that "nice" word) She is obviously a bitter, unhappy woman who relishes on TRYING to make others feel as unhappy as herself. Notice I used the word "TRYING!" Whatever you do Marie, do NOT let her do this to you. Giving in to her demands I suppose is something you have to do (rent etc.) but rising above her awful demeanor is something you CAN do and you do everyday. YOU are a light in her darkness, whether you realize it or not. Shine on sweet Marie.

I continue to hold you and Ed in my prayers. Such a hard journey to walk. My heart breaks for you both. God is using you Marie, I can see it. Even through the sadness I can see you "light." The "love" you show to others is incredible. You are someone for us to learn from.

Love you and please give Ed a gentle hug from me. Tell him my prayers for God's comfort and peace to surround him are real and I pray he can feel that love.

Mary Jo

AbbyDawg · 07-15-2009, 06:04 AM

Sending Minnesota Hugs of love and understanding to you and Ed.

"Rants Welcomed Here -- Free Hugs"

AbbyDawg

suzan w · 07-15-2009, 09:25 AM

Just read your "RANT" and wanted to tell you that you can RANT and RAVE any time you want!!! And if you need some fellow "RANTERS"...just ask!!!

lkc Gumby · 07-15-2009, 09:40 AM

Marie, sorry to hear about your crazy grandmother.
You and Ed are in my prayers daily.

CindyE · 07-15-2009, 10:46 AM

Dearest Marie and Ed,
Big warm hugs to you both. I will continue to pray for you both. May God grant you comfort and peace as you move forward in the days ahead. God bless,
Cindy

vickie h · 07-15-2009, 10:57 AM

Dear Marie and Ed,
I am always praying for you both and sending you love across the miles. I wish you were closer so I could hold you both in my arms and tell you how much you are loved.
As for your /Grandmother, you truly are a light in her darkness, she just can't see it through her own fear. Be brave, as you always have been, and shine that light right back at her.
As for the Ixempra, I had to go off the treatment after 2 doses because it also made me so ill I couldn't function. I passed out several times and decided that I couldn't continue with it. Several people i have talked to that have been on an Ixempra protocol have had the same symptoms.
Thinking of you both today, wrapping my long arms waaayyyy out to you.
Love and Hugs always,
Vickie

lisajones4 · 07-15-2009, 11:49 AM

Marie - I am thinking and praying for both you and Ed. Wish I could do more.

Love, Lisa

'lizbeth · 07-15-2009, 07:34 PM

Marie,

You go ahead and rant. In fact, it makes me feel better that someone else is human too and gets upset.

Your grandma is pyscho and mean-spirited. Shame on her.

I've been my husband caretaker for 11 years. There were a few times that I thought I would lose him. The stress that you are under with the mighty oak is a terrible, terrible burden and I worry about you.

I am lucky, I got my miracle. Twice really, but here is one story:

In 2006, my hubbie, Mike, lost 34 pounds in 28 days, after catching a bad cold and having hiccups for 10 days. He has LGL, an uncommon leukemia that causes a low neutrifil count. And he has severe anemia. His throat was so painful he couldn't hardly eat for 3 weeks. At the same time his boss' mother was ill and passed away. While he was sick Mike worked 22 days in a row.

Then when the plane was in for maintenance (he's a pilot too) we took off for a few days to go to our condo in Mammoth Lakes. His long-time "friend" and boss docked his pay.

In Mammoth, just as he was getting better, he came down with the hiccups, 24/7. It was scary. He was so sick and so frail. I finally took him to ER. They seemed to help, but we left the next morning on a 6 hour drive to San Diego. He got worse. I finally insisted the doctors do more than write prescriptions and send him home like the previous times. They put him in the hospital and finally got rid of the hiccups.

So he recovered fully, but he scared the heck out of me at the time. I lost 10 pounds from the stress and the fear.

Oh, and the boss docked him again for the 5 days he spent in the hospital. And the bosses wife insisted he work on my birthday. So he quit. And life was tough for awhile, but we adjusted.

You have us, so rant away. And I am still pressing God for a miracle for the mighty oak.