HER2 Support Group Forums - Kicked in the Teeth Once Again

Hi Everyone,

Sorry that it has been a while since I last updated everyone but once again when we went in to the cancer center, this time for my monthly infusion of Zometa, they ran blood work to check on my liver function. As most of you know who have been following my threads, my liver function numbers have been highly elevated and a few weeks ago they scared us to pieces telling us on our drive home that we needed to go to straight to the ER because they believed that I had a blockage in my liver and needed a stint put in. Well, it turned out I didn't need a stint and they kept me in the hospital from a Friday afternoon until a Monday afternoon needlessly and didn't do hardly a thing to help me while I was there and you know how awful the Onc on call was. All of this happened soon after having been told and treated for brain mets, which was another nightmare in it's self....sigh.

Well, anyway this Friday when we went in after my liver function test came back the nurse practitioner wanted to see us which is unusual and typically means bad news, this is the same nurse prac. who told us we needed a stint put in the liver. We go into see her and she tells us well it isn't good news, duh! Your liver functions are so high that it is amazing that you are feeling so well and even walking around, you are already a walking miracle. Your Bilirubin has jumped from a 4.8 to 10.2, your SGPT went from 1021 to 1000 which is a slight decrease, your SGOT jumped from 537 to 671 and your Alkaline Phosphatase jumped from 891 to 2332 in just 4 days. You are in liver failure, the good news is that if you are going to go this is about the best way to go. You will start to feel drunk all of the time (the bilirubin building up in the body does this), then you will start sleeping all of the time, then you will slip into a coma. You and your husband should go ahead and contact Hospice and make them aware of your situation so that they can be ready to come into the home at the drop of a hat. It could be days or it could be weeks but once you start feeling drunk all of the time and sleeping more you will know it is getting close. Well, as you can imagine my husband Billy and I were completely shocked, devastated, horrified and angry, every emotion and horrible scenario searing through our minds and hearts. How can this possibly be when I feel so relatively good and my appetite has been great, etc., is the steroid masking my symptoms, I know that I look jaundiced but I have for a while and they say this is normal with this type of liver function, all kinds of questions going through our minds. How do I break this news to my sister, step sister, in-laws, other family members and friends. I don't have all of my affairs in order as of yet, Am I going to have enough time to do so, and so on and so on. Once again this news is delivered on a late Friday afternoon and my Onc has gone home for the weekend so we have to sit and stew with this horrible news all weekend waiting for Monday to roll around and I had to tell my sister's and in-laws, how could we not. Telling them was heart wrenching and pure hell and what it put them through over the weekend was just as bad as what it was doing to us.
Well, on Monday morning I got up and called my Onc's office and set up an appointment for at the end of the day so that I was the last patient she would have and she would be able to spend as much time with us as needed. I also scheduled an appointment to go in to the cancer center and have my liver functions checked again so that we could see how far they may have jumped in 3 days and so that we would have them to take with us to my Onc's office.

On Sat. night my hubby and I were in the kitchen together making dinner which is unusual for us to do lately because I typically don't have the energy or strength to stand over the stove for very long, and we were commenting on how nice it was to be cooking together for a change and how long it had been since we last did this and how relaxing it was after having received the bad news that we did and the seemingly never ending emotional roller coaster we have been on lately. Just as we were finishing saying this I was opening the fridge to get a gallon of milk out of it, I was making meat loaf, and a brand new jar of jelly fell out and smashed the living heck out of my second toe on my right foot. It was bleeding and throbbing like mad, I thought for sure that it was broken and I was crying, crying for my toe and crying because it just seemed like we couldn't catch a break lately. Like I said before it seems like lately that I have had Murphy's Law stamped across my forehead. Luckily it wasn't broken but it has a really nasty ugly looking blood blister at the top of the nail just above the cuticle line and the toe is all bruised. Luckily it hasn't been sore at all since that night but I will probably lose the toe nail...sigh again.

Want to let you know that everything was great news on Monday when we went in to see my Onc. My liver function had good improvement in two of the numbers, the numbers which indicate if there is tissue damage had dropped and the Bilirubin had only increased slightly from a 10 to 12.3 and the Phosp. Alkali had only increased slightly too. My Onc said that we have been worrying ourselves sick unnecessarily at no fault of our own but at the fault of the nurse practioner because my Bilirubin could climb as high as 50 and I would probably still be okay because of my age and because I am feeling as good as I do. She said she would not even run any more blood work for at least a month to check on the liver function if she were us because it could take up to a month for the chemo drug Xeloda to start working and that I would probably be all right until then and that we deserved a good long break from all the worry and stress. We just have to hope and pray that I have a good response to the Xeloda and that it starts to shrink these tumors down that are in the liver.

My Onc was the complete opposite of what the nurse prac. said, like black & white or night and day, but we know that the nurse prac's. intentions were good and we appreciated her being so candid with us and preparing us for the worse case scenario, don't get me wrong we, Onc included, are not happy at all that she felt that she was qualified enough to make the assessment that she did and that she took it upon herself to deliver such awful news without first consulting with my Onc. and you can bet that we wont be seeing her again for any kind of assessment if we can help it and if we do have to we certainly wont be putting much stock into what she says. My Onc is very angry with the nurse prac. and can't believe that she gave us such dire news and she said that this same nurse prac. was the one that scared us to pieces the weekend we ended up in the hospital and that we shouldn't see her any more, that she obviously takes things to the extreme worse case scenario and that what she said wasn't even reasonable in my situation and telling me to call Hospice was shocking and ridiculous and that only people in really bad shape, with no healthy liver tissue left should be calling Hospice and that I was no where near that. She even went as far as to call her the Angel of Death, in a joking manner of course, lol. I also found out today that my oncologist is a Christian, Praise the Lord! She made us feel sooooooooo good Monday, I was singing her praises and hugging her and telling her how much we loved her and she was hugging me and felt so bad for all that we had been put through lately. She was absolutely wonderful!!! We have been praising God & Christ all the way home and still.

She also said not to worry about the meds that I am on being hard on the liver except for the over the counter Ranitidine which is for heartburn, to stop taking that and to cut back by 1/2 one of my sleep aids. I had been concerned that some of my meds for side effects were too harsh on my liver right now. My husband had recently bought me the "The Pill Book", which gives you the name of every single pill, whether generic or not, out there and explains in great detail all of it's uses, side effects etc., it even has Xeloda listed in it. My Onc said that the info in the pill book has to give all the adverse side effects (like they do in clinical trials) that might not always pertain to every situation and that everything is filtered through the liver and that my liver has good tissue in-between the tumors that is processing everything even though it is having to work harder and that it wont damage that healthy liver tissue.

Sorry that this post is so long but I have to share this with you all. A great book to read while going through any part of fighting this ugly disease is called "The Doctor and the Word" by Dr. Reginald Cherry, MD. I can't praise this book enough. It teaches you how to heal yourself through the promises of Christ in the Bible, the Holy Spirit, the use of modern medicine and God. It also teaches you all about the natural ways to prevent and treat disease and illness by means of diet, exercise, prayer, and supplements. He teaches you that God can use both supernatural and natural means to heal. I love his loving spirit and inviting style of writing, I can't put the book down it is so good. The miraculous testimonies of his own patients will build your faith, and his practical medical guide will get you started on your pathway to healing today. I can testify to this myself and I have only been practicing what he teaches for a short time. It is what I accredit to my liver function test on Monday morning to being such an encouraging sign. My Onc and all of the nurses including the nurse prac. who we saw that morning also before seeing my Onc., couldn't avoid her, lol, she came into the infusion room to see us as we were waiting on the blood work results, were all encouraged by the fact that some of my liver function numbers had decreased slightly and that my bilirubin and Phosp. Alkaline had only crept up slightly over 3 days. Also we had been told on Friday when we received the bad news that my urine would start to turn a dark tea color and that my stools would be very pale in color because your liver is what makes the stool dark because it contains the expelled bilirubin. Well, I had been going back and forth between light colored urine and pale stool to dark urine and pale stool while in the hospital that weekend checking on a liver blockage. Since receiving the bad news from the nurse prac. on Friday saying that I had only days or weeks to live my husband and I decided to do everything possible that we could to make this not happen. We cut out all packaged foods, all high fat foods, all foods with sugar (I was temp. diabetic from steroids), no red meat at all or salt, lots of fruits and veggies, whole grains, pasta, fish and chicken and even went as far as to not drink anything but water and I stopped taking some of my meds that I thought were harsh on the liver but that I could get by with stopping without causing any adverse side effects such as my sleep aid Lunesta, the ranitidine for heartburn, prilosec for heartburn, (went to using Tums only, which actually is supposed to increase efficacy of Xeloda by 20% if you take it one hour after taking your Xeloda, 2-4 tums is recommended), Ativan for anxiety and Trazadone which is an antidepressant and sleep aid. Many of you probably are already eating very healthy and have been for sometime, so have we for the most part, paying attention to omega 3's and 6's, etc, but I had not been depriving myself of anything that I had wanted to eat either and now I was. I also started using prayer and scripture that Dr. Cherry said to use in asking God and Christ for my pathway to healing and I truly believe that with a better diet and with the help of Dr. Cherry telling me how to pray and backing it up with scripture, scripture that tells us all about Christ's miracles and how Christ used both natural and supernatural means to heal people, how to pray to God and ask God to have the Holy Spirit speak to us and lead us to God's plan for our own personal healing that all of this has contributed to my feeling well and to my encouraging liver functions on Monday morning.

Since reading this book and another book called "The Battlefield of the Mind" by Joyce Meyer's my faith and belief in God's and Christ's promises to heal us has grown so strong that I truly believe that I will be healed here on earth and that I will have a long life span. I have claimed this for myself with no wavering, no disbelief and without any doubts. This is exactly the way the people of the Bible and the disciples were able to be healed through Christ and to perform acts of healing for others. They had no doubts and they listened and obeyed Christ and were open to using natural and supernatural means to receive their healing. This is what I wish for, for everyone, that we all be healed and healing only comes from Christ the Greatest Physician in the World. The doctors that help us today to battle sickness and disease do it through the gift and skills that God imbodied them with and we are to use these gifts along with our unwavering trust in God and Christ to receive the best care possible and the healing that God has promised to everyone. If you pray to God and ask Him to use the Holy Spirit to tell you what your pathway to healing is the Holy Spirit will reveal God's message to you and you will know what God's plan for your healing is and how to follow His plan to receive it.

Again, I apologize for this being so long and for it ending up sounding like a sermon but I felt compelled by God and the Holy Spirit to share this with you because God said someone here on this board really needed to hear this and would benefit from it. If I have offended anyone I am also sorry and I do not mean to suggest that anyone who is a nonbeliever will not receive their healing because it is already proven that many, many do.

One more thing I would like to share and then I am done. My husband and I have been searching for the right church to attend for quite some time, it hasn't been easy with us living in such a rural country area and with all of my health problems and life's busy pace. There was a church in our area though that is very close to home that I wanted to visit badly, I felt like it was calling out to me to come inside but we never seemed to find the time to go. Well, this past Sunday we went and the night before we went I prayed to God and asked Him to use the Holy Spirit to reveal to me whether or not this was going to be the right church for us and the Holy Spirit spoke to me, the only way to describe how the Holy Spirit speaks to me is that I pray to God about what I want revealed and then I quiet my mind and wait for the answer from the Holy Spirit, a thought comes into my head that I know is not of my own and that is of the Holy Spirit and that is what I trust in as my answer from God. Well, when I asked the Holy Spirit if this was going to be the church for us the Holy Spirit said yes and when you go you need to tell the congregation your story of battling breast cancer.

Church was wonderful. We have definitely found the right place to worship. It is a small congregation. During the service they have a time when they ask anyone if they have statements of praise, thanks or prayers. Well, I spoke up and stated our names and that we were thankful to be here today and thanked everyone for the very warm welcome they had given us and told them that I was battling stage 4 cancer with met's to the brain and liver and that it basically was a race between my liver and this new chemo (this was when we only had the news from the nurse prac.). I told them that God & Christ were already healing me with the help of doctors and through the power of prayer and that I was holding fast to my belief and faith and that I would not waver or have any undisbelief that Christ is the worlds Greatest Physician and that I know that He will keep his promise just as He did in the Bible when He healed so many and that He will heal me too. Well, there wasn't a dry eye in the house and they all lifted me up in prayer, came around and hugged me, gave praise to the Lord and some said they almost didn't come to church today and now they know why they did and they said they felt the Holy Spirit move through the church this morning with my testimony. After the service we went to adult Bible study and everyone was coming over and hugging me and telling me how they would be uplifting me in prayer for a healing. One man shared his story with me who had been battling cancer himself and was now cancer free. It was Awesome. I was so blessed with their out pouring of support, love and prayers, some actually told me they loved me and I told them I loved them too and would be praying for them as well. We are definitely going back next Sunday, I look forward to it sooooo much.

Well, I am finally done. I hope that you are all doing well and you are all always in my prayers, thoughts and heart.

Love, Hugs & God Bless,
Nicola

Worship the Lord your God, and his blessing will be on your food and water. I (God) will take away sickness from among you, and none will miscarry or be barren in your land. I will give you a full life span.
(Ex. 23:25-26)

Healing Scriptures to Read

Ex. 15:26
Deut. 7:14-15
Deut. 30:19-20
1 Kin. 8-56
Ps. 91:9-10, 14-16
Ps. 103:1-5
Ps. 107:19-20
Ps. 118:17
Prov. 4:20-24
Is. 41:10
Is. 53:4-5
Jer. 1:12
Jer. 30:17
Joel 3:10
Nah. 1:9
Matt. 8:2-3
Matt. 8:16-17
Matt. 8:18-19
Matt. 21:21
Mark. 11:22-24
Mark. 16:14-18
Rom. 4:16-21
1 Pet. 2:24
1 John. 3:21-22
1 John. 5:14-15
3 John 2
Rev. 12:11