CAUTION~May Contain Depressing Thoughts About Husband's Progress!!
 

Not my normally LOL post, not even just a sad one...Pretty down right depressing!! My husband expressed his concern about his progression on this very troublesome journey. Yesterday he mentioned that he still did not feel the best and that he had started the chemo without listening to his body because he thinks the disease is taking over. He somehow knows that he had to start despite feeling a little under the weather, his belly was still not ready for this new regime. Of course this is not a reoccurance, we never really got rid the cancer in the first place. His quote was "Sweetheart, I really do not think I have much time left here with you. I will fight to get every second out of this, but I feel it is taking over right now and I need you to be prepared." What do you say to that, how do you deal with that?? Oh my God Girls, I will never be prepared for that, I will never be right without him even though life will go on around me. I know I have to wait for scans to be taken and read & that sucks, but it might be the inspiration he needs. Remember, last chemo was 4/12...radiation started 7/10 and he has not been right since.

All I can say is remember your first heartbreak when your heart literally hurt, I mean pain hurt....really deep-down ache that you thought would never go away?? That is where I am at and all along this journey I have dealt with my feelings and my heart hurt then too. Now is different especially since I have come to count on the signs his body gives us. As I wipe the tears of sorrow I must remember he is still here with us and until I know different I will still BELIEVE!! Thinking like that has me confused a bit, but that is what faith is minus those doubts.

I am scared girls, that conversation was not meant to scare me it was his honesty which has been incooperated all through this fairy-tale marriage. And that is another thing, we have been married 12 years on 10/21/07 and I feel this is not enough time with him. Our story cannot be done yet, we are not even in the middle of it!! (Cyring!!) These feelings of pain I have I did deal with and until recently I felt I was preparing myself rather efficiently. I cried all last night and finally fell asleep around 3 am and you know I try to limit my tears. I cannot get past this today, my heart is breaking. We all know that cancer is unpredictable and anything can happen, we know that there are statistics and why can he not be the next great statistic? Regardless, he is very concerned and I am very scared. I know my life will never be the same, I know that is is not being alone that bothers me. It is life without him, it is going on in life without my Knight. God has surely sent him to me, he is my gift for certain, I am sorry I sound so sad and greedy. By greedy I mean that I will take him anyway he is, but he is getting tired girls. It has been a year now and he is tired.

His journey has been tough, he is getting beat up with this hateful disease. Ed is the most disciplined, determined man but when he says he is getting tired, after I absorb that I again dry my eyes. If from the beginning of this fight he talked like that I would understand. My boy will continue to fight and get every moment possible out of this and I will try to push these "What If's" away. After all he is still here loving me and yes Marejo...we will love until we can love no more.

We picked out our burial plots finally, we will be side by side surrounded by woods and my Mother-in-Law will be getting us a Red Maple tree to go near us with a memorial plaque. Ed was a strawberry-blonde haired man with sensitive skin and I do not do well with the heat so a tree is a good bonus. It is not that we are ready for death that has me concerned, again we live in a terminal world as my friends have stated this week, and I do feel better having the plans that we want. I am so happy we have what we want and feel closure with this subject & upon analyzing my thoughts I know this is not the trigger for my grief. Again he is here with me and I am thankful for that, for every second, for each smile, for the comments that constantly remind me he knows me better than I know myself. I want no one to cry for us, this too shall pass. I just feel so depressed today and these kind of days makes it hard to trudge on forward.

I know I am talking in circles and maybe these things will make you sad knowing that you have people in your lives that feel the same way. I need to say that I really feel doom today and had to express it, sometimes I feel it is how I stay strong. These feelings of dispair I have not felt since his dx when I was green about breast cancer and look at me today wearing green shoes!! I did have reservations about this post seeing we have newbies, we have mourned another death of a Warrior friend, and so many friends have had some bumps in the road. No one makes me feel like you girls do, no one does it better.

Again he asked me, "Are you always going to keep in touch with the girls on Her2support?? It is important for you and to them Marie, that you finish your mission and advocacy and continue to help others". My answer was "Absolutely Babe, I could never leave this group of family, they are all in my heart and even long after you are gone I will find solice and peace being able to bring to them MYSELF, MY PRAYERS AND MY BELIEFS!!"

My Goal Today: I will try not to cry anymore, I will continue to push the "What If's" away and incooperate some laughter tonight. My candles will burn with the fierce intensity of prayers. I ask again for no one to cry for us, we are in need of some prayers and maybe the positivity that we are lacking this week. I am sorry if anyone feels sad after reading this post, I just needed you all and like I said....no one does it better!!

I send love and prayers your way, today and always. I promise I will feel better after talking to you girls, after I escape into the flame of that candle...but especially when I push them "what if's" away. I am not being negative, just facing reality of the severity of this disease and our particular journey.

And Girls he is still here and.....I Still Believe!! (crying, but believing!!)

Believe51

Well, sorry but asking us not to cry was a little unrealistic! But thank you for sharing your most private and personal moment.

I have no words.

You do not yet know what will come to be, perhaps this is the moment of darkness before the dawn, perhaps not.

I do actually have some words about tears. A dear friend of mine told me this, maybe in response to her daughters question about why she cried when singing beautiful music, maybe in answer to a different question - I don't remember. But I remember the answer: When you cry, that's how you know God is there.

God is there, here, in the pain and sorrow and the joy and love we share.

Know, Marie my dear, that you and Ed right now have our love and hearts wrapped around you tightly.

Chris

Oh Marie, My heart aches for you and for Ed. Just aches. Life certainly is not an easy place to be at times, is it? But, waiting in the wings, is our Heavenly Home where pain, sadness and unrest are NOT ALLOWED.

I honestly don't know what to say but to say that my heart is definitely with you. My prayers for peace and for God's loving Arms to hold you both close are being said.

Sending love and gentle hugs to you and Ed.

Mary Jo

Marie:
I have a hard time responding to your post. It hurts my heart to see you hurting for your husband. I know that I would be feeling the same if it were my husband.
My thoughts and especially my prayers are for the two of you today. May our Lord and Saviour give you a peace about this. He is with you, and I know you must feel Him as your signature says. That doesn't keep our hearts from breaking.
I wish we could give you a big hug and a shoulder to cry on. Just imagine our arms wrapped around you and many shoulders bearing your burden. We love you.
Linda
S. Mississippi

Marie,
My heart is breaking for you. You and Ed sound like you have so much love for each other. This disease is horrible and destroys so much of us. The one thing it cannot destroy is your love for one another or your memories. You will always keep those close to your heart. I pray that god wraps his loving, healing arms aound you and Ed and you find some peace.

It's tough to be so upset and scared!!
 

Hi Marie,
My heart just goes out to you. You certainly conveyed your fear and sadness in your post. Nevertheless, your husband has just finished a very difficult year. I am hoping that Tykerb and Xeloda will work for him, and that he will start to feel better soon. He has been through so much this summer and certainly has a right to gripe.

I can somewhat relate. I have been off chemo since last November and off Herceptin since May. I need to be off chemo in order to get into a trial that is supposed to open up soon. As a result, the bone met in my hip is growing and is making it difficult for me to sleep at night. I saw my oncologist today and he has scheduled a pet/ct for next Wednesday to see what is going on. If the hip looks really bad, then I will have to have radiation. After your husbands experience, I really do not wish to have my hip radiated. I have had bad experiences with radiation. When I had radiation to my chest nine years ago the top layer of the skin was gone by the end of it. I was not tired from it, but I was in a lot of pain by the end, but didn't miss a day from my classroom. Three years ago I had stereotactic radiation after my brain surgery. As a result, I had to have two more surgeries due to radiation necrosis. So you see, I do not have a favorable feeling about radiation. What will be, will be, but I hope this trial opens up before I need radiation.

You and your husband are in my thoughts, and truly feel, he will feel positive again soon, and be ready to endure what he needs to do to win this battle. He is lucky to have a wife who "truly believes." It sounds as if you have a wonderful marriage.

Best wishes,
Barbara H.

Dearest Marie,

I don't know what to say. Your post has brought tears to my eyes. Cancer takes too much away. The innocence of knowing that you will grow old together with the person you love most in the world is snatched away. Please hold tight to the time you have with your dear husband and lean on the Lord for the rest. There just is no other way to rationalize or get through without that comfort.

Hugs and Prayers,
Lexi

Marie
 

I feel your pain. We all feel your pain and know how your heart aches. I have been married to the most patient, giving, trusting, loving man for only 22 years and I still feel like it is not even close to enough.
The only thought I have for you is to remember that we never know the big Plan. Not ever. We can guess and we can question, but we will never know. Please try to enjoy your days, hours, minutes with your love and give him your strength.
You two are in my heart and my prayers. Keep us up to date.
Peace be with you Marie,
Emelie

My dear Marie,

My heart breaks for you. But I know how Ed feels right now I felt that way three weeks ago I honestly didn't think I was going to make it. But I am doing better being on this new chemo. And I pray to our dear lord that this is what is going to happen for your Ed. I wish I could give you both the biggest hug going! I am here for you both for anything. God I so stink at writing how I truly feel. But I know you will feel better you are a survivor and warrior to my friend and we love you so much, please let me know how you both are doing and I am praying and commanding a miracle for Ed too! I love you my friend.

Dear Maire,
As I read your post the first thought in my mind was "I am glad that it was I who had the cancer and not my husband." It is so painful for our loved
ones to endure the disease. Your pain and sorrow screams out from my
lap top. I am so very sorry that you and Ed are in so much pain for each
other. I do know how much you believe - so do not give up (even though
Ed is tired) and he has a right to be. My heart also aches for the feelings
of doom that you are having. Remeber - there certainly are miracles. I
am keeping both of you in my prayers for peace and continued strength.
Please continue with your warrior mentality - and know your comrades are
with you - praying hard for Ed.

Warmly,
Jean

Oh Marie (tears), I started to read your post before dinner. Had to stop. Started to cry and it is my husbands 52nd b-day today. He was grilling steaks while I caught up on my addiction (this site). Left the computer. Ate a wonderful meal. Had way too much Chardonnay. Came back, avoided finishing your post. Had to finally come back to it. Jeff is out dropping off an emerg sump pump to a friend. We have been together since we were 16. Can't imagine life without him and I constantly worry how he will handle life w/o me. All I can say is that the deep deep sorrow you are already feeling can only be attributed to the bottomless love you share. I must stop now. Jeff will be home any second now and I don't want to ruin his birthday. Try to stay as strong as you can for Ed's sake. So sorry if this is post is a mass of jumbled thoughts. The tears and wine are making it very hard to think straight. I pray you have a restfull night and become re-energized tomorrow. Jeff just walke in. Good Night Sweetie. Karen

do not lose heart
 

Marie,
listen to what karen said. People sometimes can, and do, step back from the edge of the cliff. Do not lose heart.

Much love
Chris

Oh Marie -

I read your post---twice. I don't know you one bit but I have never wanted so much, to give two strangers a huge hug as I want for you and Ed. My heart just breaks for both of you. It is so hard sometimes when we are grieving, the world goes on and we want to say "stop"----we are grieving for something here"; but life for everyone unaffected goes on as normal.
I just hope you both find the strength to hang on to every moment for what time you may have together. We do know, this disease is so unpredictable. I would guess you are on the minds of many right now.

I am in awe of your husband's honesty and straigtforwardness. That took alot of courage. And your sharing with us was so brave.
One of our senior members posted something a few days ago that stuck with me. It was about being in a restaurant. She noted that, unbeknownst (sp) to them, there were probably people in that room who had very little time left in the world. But, unlike some of us, they don't know it. They certainly don't have our advance warning of mortality. Life is so fragile. But we KNOW it.
I hope you understand what I am trying to put into words. It is so difficult....

Marie
 

My heart goes out to you and your husband Marie. I do know how you feel. I have been married for 45 years to a very loving and wonderful husband and father. Although it was not cancer my husband had, it was still very traumatic. He has had open heart surgery three times, two small strokes and gall bladder removed. he has died on the table twice and they were able to bring him back to me. I simply refuse to let him go. He is a man of very deep faith and will accept whatever the good Lord hands him. Keep the faith Marie and you will get thru this. Hugs and Blessings to you and Ad. Jeanette

Marie,

My heart aches for you and Ed and your post brought tears to my eyes. I don't know what to say to you except that I'm here for you. Ed has been through so much in the past year so I can understand how tired he must be. Perhaps now that he has started the chemo he will soon start to regain his strength. You are a true believer and don't ever stop believing. Miracles do happen! You and Ed are in my prayers.

Dear Marie: Your post reflects all the feelings and emotions that I have been feeling for months. I am so sorry that you are having to endure the hellish roller coaster ride. My partner , Patricia, has been in the hospital for 3 of the last four months. she has been fighting this disease since 2001 and basically became an invalid in Feb. We have been together 14 years and it is breaking my heart to see this disease destroy her life. About two months ago I thought for sure her fight was over but the women on this board encouraged me and and gave me the hope to believe in a miracle. Pat tried another chemo and it pulled her out of the jaws af death. She is still fighting and I am still searching for another miracle drug and praying everyday.I can understand your feelings of despair when your husband says that he is fighting but his body is tired. When Pat says these things I get a punch to the chest feeling and I am unable to see how I will go on without her. I am just glad that we have each other here on the support board. Thank you for sharing your innermost feelings.
Donna In Birmingham
Pat Bailey 55 yo
2001 DX DCIS, mastectomy & reconn
2003 dx mets to lungs, double thoracotomy for bx, herceptin, navelbene,carbpl,
2005chest wall reoccurrance, rads, repeat herceptin, navelbene,carbopl
2006more mets to chest wall, axillary and rt neck lymph system, Taxotere, herceptin
x 2 treatments, inflammtion to lungs,pneumonia, stop taxotere , rads
2007disease progression to small intestine, rt. axilla, lungs,epirub,5FU,cytoxan x 2 tx
disease halted but counts so low and so weak that chemo stopped.
July2007 disease progression, given 3 weeks to live. Began herceptin, doxorubicin
2 weeks later ready to leave hopitaland ambulatory with assistance. 1 week at home then
signs of lymphedema and epidermal skin rash returning. #2 dose of doxil given with no response.
Gemzar started while back in hospital with slow positive response. Back home but terrible weakness and stomatitis.
Stop doxil. Start Gemzar, tykerb and herceptin on 8/21/07

My heart is breaking, also. What a wonderful relationship you and your husband have together. One thing that kept coming up for me while I was reading your post is that when I initially started treatment, I felt so much worse than before treatment, that I thought, surely this disease is spreading or I wouldn't feel this bad. After 6 months of tx, I was NED for 6 months and then had a small reoccurance. Again, after I started tx, I felt so bad that again I felt like the disease was spreading rapidly and I must be near death. So the point I am trying to convey is that I feel so much worse during treatment than I when I am not on treatment, so I am hoping that is what is happening to your husband. I will continue to keep both of you in my prayers and I will keep believing in a miracle for you, your husband and all of us.

Marie
I too had a hard time reading your post....I could feel your pain and sadness. It is because of the great love shared by you and Ed that this vital core of endurance and oneness seems to be shattering around you. I am hoping for a miracle for you both, that Ed will continue to get stronger to fight this. You are both in my prayers everyday for strength during all of this.....you have given each other the greatest gift in life... love

Believe's
Eternal
Love
Impresses
Everyone
Very
Emotionally

because we all love you and Ed.