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

[VaMoonRise]

I can feel your deep seeded fear and pain from here. The love you and Ed share for one another is the same as what my husband Billy and I share for one another. We have known each other since I was two years old. We grew up across the street from one another in Chesapeake, VA. He was my brother Scott's best friend, our Mother's were best friends too and I was best friends with his younger sister. My Mother was like a second Mom to them and their Mother a second Mom to us. Our families were like one. The bond we share goes deeper than anything I have ever known. My family moved away from VA to NY when I was around 12 years old. We all kept in touch though over the years, Billy even came to visit us in NY, and after Billy and Scott graduated HS they attended college together for a while in VA. After college Billy got married and had three wonderful children. Billy, his wife and children even came to visit us a couple of years after my brother Scott died in 1986 in a drowning accident in an AZ River where he was then living with his fiance and her son, he was only 23 at the time. After Scott died Billy made a point of staying in touch with my Mother, sister and I. He was like a son to my Mother. Many years passed and our contact with one another became less and less as we all got caught up in our own lives, although we still would touch base with one another once in a while. Both Billy's Mom and my Mom passed away in the 90's to breast cancer. Billy and I hadn't seen each other in 10 years but I received a phone call from him and he told me how sorry he was to hear about my Mother's passing. His Mother passed away before mine in 1990, my Mom in 1995. We talked on the phone for about 8 hours that night. He told me how him and his wife had split up a year before and that she was about to remarry and how difficult the break up had been on him and the kids. From that phone call on we started talking by phone on a daily basis. We finally reunited in person a few months later at a mutual childhood friends house in Chesapeake, VA. I was living in NC at the time, Billy was still living in VA. When we first saw each other for the first time in 10 years we embraced each other tightly and all I could feel, think or say as we were hugging was "Oh, wow, I feel like I just came home." It was the best feeling in the world, I knew immediately that I was right where I belonged. I had been praying for years for God to send me a man that would be my best friend, my confidant, my rock through thick and thin, my loyal partner through life, my soul twin (we have so much in common it is almost unbelievable) and soul mate. I had been through so many trials and heart breaks in my life and really bad relationships and I had promised myself that I would never settle again for a man that wasn't worthy of my love or what I had to offer as a person and a woman. Well, God answered my prayer when He brought Billy back into my life. He is more than worthy of my love, it is I that at times. doesn't feel worthy of his love, he spoils me rotten every day. We have been together ever since that 10 year reunion. We had our 7 year wedding anniversary this past June 17. These past 7 years have been the best 7 years of my life. Every day spent with Billy is like my prayers being answered all over again, like Christmas morning, my birthday and wedding day all rolled into one. Every day I thank God for bringing us together in marriage.

The thought of cancer separating us is like a knife stabbing through my heart. Billy and I have both been through so much already in life and have lost way too many loved ones along the way. I can't imagine God allowing cancer to take away from us what we have been searching for our whole lives only after just 7 years of being together as man and wife. I want to grow old with Billy more than anything else in this world.

I don't know if you have been following my recent posts or not with all that you and Ed have going through lately. But starting about two weeks ago we have had the biggest nightmares of our lives. It first started with the news of me having multiple brain mets and having to go through WBR, then with us being told by way of phone call on our drive home from chemo, not to go home but to go straight to the ER because they thought I had a blockage in my liver and needed a stint put in. Luckily I didn't need a stint put in but my liver function was/is in terrible shape. I have been very jaundiced and extremely weak for weeks. The worst was the Friday before last though. I went in to have my monthly Zometa and they ran blood work while I was there and the blood work came back showing that my liver was in even worse condition now and that I needed to see the nurse practitioner. The nurse prac. gave me a very cold and blunt prognosis of just a couple of days, maybe weeks to live and told us to go ahead and contact Hospice now. Well, you can imagine our shock, horror and utter terror. It made no sense, how could I be dying when I was up walking around, eating well, feeling pretty good over all except for the pain in my liver and being tired. The nurse prac. even went as far as to call me a living miracle already because she couldn't believe that I was up walking around. This being a Friday made it all the worse because my Onc. wouldn't be available until Monday morning sometime. What if I died before then and Billy later found out that something could have been done to prevent it. The weekend was pure hell for us. We had to contact family members and tell them that I had only days or weeks left to live. Telling my sisters was one of the hardest things I have ever had to do in my life and poor Billy was frantic as all get out all weekend watching me for signs of rapid decline. Well, Monday finally rolled around and we were able to get in to see my Onc. and her prognosis was completely different from that of the nurse prac., it was like night and day. She couldn't believe that the nurse prac. had told us that and couldn't state enough how wrong the nurse prac. was. It was the biggest sigh of relief that Billy and I have ever breathed. You can imagine all of the emotions we went through and how relieved and angry my family members were at the nurse prac. for putting us all through that. You can read more about this by going back to my posts titled "Weekend from H, E, Double Hockey Sticks" or "Kicked in the Teeth..."

To make all of the above even worse, as you know, we had been waiting to get me started on Xeloda ever since I had WBR and my insurance company kept denying us. We were down to our last appeal and all of this waiting and not being on any chemo of any kind was only allowing my liver function to grow worse and worse and by the day. Every day was like a nightmare until my Onc. was able to get me on Xeloda after my weekend hospital stay. We also went ahead and started paying for the Xeloda out of pocket until we got the final answer from the Ins. Co. Luckily after a lot of phone calls by my Onc., an advocate at the cancer center, myself and a plethora of paper work the Ins. Co. finally approved it.

I had drastically changed my diet after being given a death sentence. I went to eating fruit and veggies all day long, no red meat, no sugar at all and nothing to drink but lots and lots of water. Just by drastically changing my diet and lots and lots of prayers I was able to get my liver function numbers to stop jumping sky high repeatedly in just over 3 day periods as it had been doing since before going into the hospital. I have been on Xeloda now for 2 weeks, I am on my one week off right now which started on Monday. I just had blood work done yesterday to recheck my liver function and I am ecstatic to tell you that my liver function numbers have started to drop. My Bilirubin went from a 12.3 to 11.7, SGPT from 759 to 409 and my SGOT from 453 to 242. I am thrilled to pieces as is my Onc., she said Xeloda can take up to a month to start working in some patients and this is a very good sign that mine has already started to work which is incredible since I have only been on it a short time. She also said that because I haven't had any side effects as of yet from it that she is going to increase my dosage from 3 pills in the morning and 3 at night to 3 in the morning and 4 at night. If I start to get any side effects I am to stop taking 4 at night and call her immediately to let her know.

Before being reassured by my Onc. and having these recent blood work results I was having feelings and thoughts like this.

Having failed on my last three chemo's, my liver being in such rough shape, and just "what if" the prognosis from my nurse prac. were true?? I couldn't stop thinking about it. I was really starting to become deeply afraid. I truly felt that everything was down hill from here and that it would probably be a very rapid decline. I was having terrible thoughts and couldn't stop picturing my Mother's last days of life and how horrible they were and thinking that would be me very soon. I couldn't stop crying and worrying about Billy and my sisters and what this was doing to them. I was even plagued with guilt from having all of these negative thoughts. Where did my faith, unwavering trust and belief in Christ to heal me go??? Then like a loud voice booming inside my head I realized I was allowing satan to invade my thoughts! I had left the door wide open for him and of course he wasn't going to let an opportunity slip on by. Once I realized what I had done I began to pray. I asked Christ to forgive me for my moments of weakness and for Him and God to surround me with Their armor so that satan couldn't slide in with his negative thoughts and worries. I asked for Them to give me the strength to keep him at bay and to fill me back up with my strong faith, unwavering trust and belief that Christ would heal me. Well, that is exactly what Christ and God did, They are soooooo Good, praise the Lord!! They have filled me back up with my faith, unwavering trust and belief, an inner peace, a quieting of the mind, over flowing joy and have set me on my path to healing. Since then I make sure to have little conversations with Them throughout my day, to constantly praise and give thanks to Them no matter what kind of day I am having. As you can see the Lord and Christ are blessing me with the healing I have asked for. Not only am I feeling better spiritually, emotionally, mentally and physically but my blood work results are proof that Christ is alive and working in me. He can do the exact same thing for Ed, Sweetie. Don't let satan take from you what you know to be true! Just keep praying and asking the Lord to make it all so and I will be praying every day for you and Ed asking for the same thing and I know the Lord will hear us and that He will answer.

I can't recommend the books enough that I mentioned in my last few posts. Please Sweetie go out and get them, either from the library or a book store. If you are unable to then please let me know and I will get them for you and mail them to you. They truly have done wonders for me and gotten me to where I am now health wise and in my closer relationship with God and Christ. They also have taught me the right way to pray when praying for a miracle.

Here is a simple healing prayer that Ed can pray every day or you can pray for him.

Father God, I thank You for creating me in Your image. I praise You that I am fearfully and wonderfully made. I confess that You are the God that heals, You and Christ are the Greatest Physicians that ever existed or ever will exist. I ask You to heal my body from the top of my head to the soles of my feet. I pray that You would regenerate every bone, joint, tendon, ligament, tissue, organ, and cell of my body. I ask You, Father, to defeat satan again, as You did on the cross, and defeat any disease that's trying to take hold of this body, You so marvelously created. This is the day that the Lord has made; I will rejoice and be glad in it. In Jesus' powerful and precious name I pray with love, gratitude and many thanks. I love You, Lord God. AMEN.

I also repeat to myself all day long that "God is All and All is God, if God is All and All is God, then God resides in me, and where God resides can only be good things, pure things, and no evil, disease or negative thoughts can reside where God resides."

I love you my Dear Sweet Marie, and you and Ed are in my thoughts, heart and prayers daily. If you need me for anything don't hesitate to e-mail me directly at VaMoonRise@aol.com. I will even give you a phone call if you would like, we can chat, vent, cry, laugh and pray together.

Love & God Bless,
Nicola

PS: Told ya, that once I get to talking it is hard for me to stop, lol. I could have kept writing a bunch more but thought that other readers might not appreciate my ramblings as much you will, lol. I hope that if we talk by phone we can both get a word in edge wise, lol.

[dorinda]

i am new to this board but have been following you and eds writings. my heart breaks for you and him. i understand how he feels when he says he is tired. i too have felt like that. tell ed to think on GODS WORD AND what it says and not on all those negative reports. GODS WORD is our only hope. my prayer is this new chemo drug will work its magic on ed like it has on lots of people on this site.you and ed are always in my prayers. take care dorinda

[Esther]

Your post brought up alot of memories for me. When I was diagnosed with liver mets in Jan 04, my liver was shutting down, my skin was yellow, even the whites of my eyes were yellow.

My liver was completely covered with tumors. A month after my diagnosis, I took a one week chemo break to go on a planned ski trip to Sun Valley Idaho, not knowing if that would be my last outing with my husband and my friends.

My friends that shared the condo with us honestly feared I'd pass away while in Sun Valley.

I was on Navelbine/Xeloda and Herceptin and they turned the tide and 13 months later my liver was NED. While there is life, there is still the chance for treatment to take effect. This is a tough spot for you, I'll be thinking of you and supporting you in spirit no matter which way things go.

[Sherryg683]

I am so sorry that this disease has done this to your loving husband, I think your husband truely wants to prepare you if it does end up taking his life... I do want to say something....being stage IV, I have thought about the time when I may have to tell my family that it's nearing the end, I have told my husband that if this happens to me, I don't want him and the children to be miserable. . I want them to tell me they love me and will miss me but will go on with a happy life. It would only be then that I could go in peace. The though of me bringing awful pain and years of hurt on my family would just destroy any days I may have had left. I know that the ones left behind are the ones that will be hurt but I think it's also important that the one who is passing feels he can go in peace and love and not feel like he need to fight for just one more pain filled day to keep the loved ones from going crazy. That's too much of a burden. I plan on living a long time but when and if my time to go comes, I would like us all to be in bed together, my hubby, son and daughther, eating ice cream and telling stories. Then them telling me that they will miss me but will be fine, I would tell them I'll be watching over them and will see them in enternity one day. My best friend died of colon cancer , she had 2 teenage boys who were out of town when she went down hill. She said she couldn't die until she got to see and speak to her boys. She waited and waited till they both came home so that they could sit in her bed and talk. She died the next day, she had said what she needed to say to them and felt that she could then go to the Lord in peace. Maybe what your husband said is his way of peparing you for the worst, he probably wants the burden of hurting everyone he loves taken off shoulders, it's a heavy load. Dont' think he isn't thinking more about you all than himself. I just think there's a time when the caretakers, lovers, family have to say to the patient, it's OK to let go, or you don't have to fight anymore . We will never forget or stop loving you and we will be happy in our memories of you...sherryg

[BonnieR]

Sherry, that was profound. Thank you.

[Believe51]

We have had these talks over the last year and I am so happy that we did. I have promised him that I shall survive and need to go on, that he can count on me to continue to make differences here on earth while I still have the chance. We have talked about 'that time' and he will know when that is. Sherry, I told him he has to tell me when he is too tired to fight, when the pain is too unbearable, when the fight is gone...I told him I would motivate and push him UNTIL he said "NO MORE". I know myself and I will let go and even if I thought I could not, I would have to. I never thought I could handle this journey we are on either, but look at us now. As a patient I know there comes that time when the fight is gone. As a caregiver I know the time comes for me too that seeing him like that is too much to bear. I know at his burial I will know and say..."He is not suffering anymore, he is doing God's work now".

On a happy note, I went to the cemetary to see our site and it is all I wanted it to be and more. We wanted the same thing so when he was feeling well about 5 weeks ago he reserved the spot with his mom. Gorgeous trees deep surround us and we are going to plant our own tree. I hope they let me have a Dogwood tree, I have fond memories of my Meme's house and those trees. (messy but gorgeous) They are one of my favorites. Tomorrow I want to reserve my stone....black granite with many features including two vases right on it and a locket on front that will have our pictures in it. So happy to have this closure!!

Thanks for your input, I appreciate it. Big hug and loves.>>Believe51