I received the results of my PET-CT scan on Tuesday when I went for chemo.  We got to the hospital at 11:00a.m.  After I signed in I went to medical records at the hospital to get a copy of the PET-CT scan report so I could read through it and be prepared with knowledge of what is going on when I saw the doctor.  I was not surprised with the results of the scan, but I was disappointed. 
    I have widespread new tumor growth, and the tumors that were stable are now metaboically active.  I have new tumors growing around my right lung, my right shoulder and humerus, and all over the right chest wall.  I had hope that the swelling in my arm was from something other than cancer, and I had tried to think of all the reasons why I could have swelling and pain, but it is in fact cancer.  I have cancer in my lymph nodes in the jaw, armpit, collar bone and neck. I have cancer growing in my right hip and pelvis, as well as the hottest most acitve cancer is in my left hip.  I have been on strong pain meds and I am still in so much pain!  The cancer is growing in my thoracic and lumbar spine.   Suffice it to say, the chemo (Taxol ) is not working. 
      I requested to see the Doctor, not the PA, so we waited an hour and forty-five minutes, and who should walk into the room, but the PA.  Of course I tried to ask her questions.  She thought I should wait and do another 3 week cycle of the same chemo, but if the chemo hasn't worked after 2 months, I don't think it is magically going to start working.  We (me, my mom, and Dan) were really frustrated that we had waited so long, and Dr. H was too busy to see us..  It is so annoying that drug reps don't have to wait as long as patients to see the doctor.  We're the ones who are paying the doctor, and we have to wait FOREVER....  Anyway, that is a whole other issue.... 
     Because I had waited so long and Dr. H didn't have time to see me right then, we decided to go ahead with my regularly scheduled chemo (taxol and herceptin).  Then when Dr. H had a minute I would go into a room so I could talk with him about the new plan of action. 
     At 4:00 I was finished with my treatment, and we finally had a chance after waiting a little while to see the actual oncologist.  He did a thorough exam, and after seeing what was going on with my chest wall, plus reading through the scan report, he agreed (DUH!) that the chemo was not working.  He gave me a couple of options for the next chemo to do:  xeloda and herceptin, or gemzar and herceptin.  There also were a couple of other drugs we talked about taking after I do a 6 month cycle of the previously mentioned drugs; Avastin, tykerb, adryacmyacin, and taxotere.  There are a lot of treatment options and combos out there, we just have to find one that can work against my aggressive cancer. 
     I am so scared that this is the beginning of the end.  I am worried that when I have my brain MRI on Monday, it will show new tumors in my brain.  I am worried that I am never going to be off chemo again, and it will be continually changing and trying different chemo combos to try to keep the cancer under control.  Getting bad news like this is so scary.  I just feel like there is nothing I can do, and the cancer is invading and growing, when I wish it would just go away.  This is so difficult.  I hate bad news.  I wish I could just say that everything is going to be okay, but I just don't know anymore. 
    I get next week off from chemo, and will start the new treatment the next week.  Dr. H's first choice is the Gemzar & herceptin along with the zometa for the bones.  Gemzar is supposed to be a pretty mild chemo, and it doesn't cause hair loss.  Go figure.  I lost my hair for nothing.  I am trying not to focus on that, and trying to think of the positive of loosing my hair (cute new wigs, and hats etc.) but when it comes right down to it, I would rather still have MY hair.  It is what it is.  That is my mantra.  It is what it is. 
    At church on Sunday, we had  a Relief Society lesson about worrying and fear, and there was a saying that was shared that has stuck in my head:  "Why worry when you can pray?"  Worrying about all these things isn't going to change what is, and what will be.  So instead of worrying, I'm just going to pray.  I would appreciate all of your prayers as well. So, we're not going to worry, we're just going to pray.
    Another thing that I keep on thinking of is:  No matter how bad you have it, someone has it worse.  And no matter what trials you are facing, you can always do something for someone else, whether it is a smile, a card, a phone call etc.  I have found that as I have tried to think of others this week, even though I am disappointed in my bad news, I can still find joy and happiness.       
     And also, it is so hard to feel sorry for myself when so many people do so many small acts of kindness to show that they care.  We really are so blessed, and Heavenly Father is looking out for us, and this is His plan, and He will provide for us, no matter what trials or burdens we are called upon to bear. 

Jan
10/2/2008 12:38:13 pm

I have been praying and praying, fasting and praying, as has everyone and asking that you will be blessed for whatever you need in your life according of course to His will, you are always in my thoughts, you are amazing and I hope you know it is okay to get mad, you dont have to be strong for everyone all the time, you amaze me how you try to just continue to try to do as much as you can and are always still thinking of others, it is okay to think of yourself and what you need to at this time in your life, I know that you feel the peace and comfort and love of our Savior, He has been through everything you have been going through, He knows exactly what you need and how you feel, how grateful I am that He is there for you, I know that is were you get your strength, you are one of Heavenly Fathers special daughters, an amazing mother, an such an example to others, I am sure you have touched more lives than you could ever imagine. I could not handle what you are dealing with, I would have gave up a long time ago. I just wanted to let you know how much I love and care for you and even though I am in Vegas, you are not forgotten, you are very dear and special to me. Let me know if I can do anything. I am looking forward to seeing you guys when you come to vegas in Nov. Love ya Jan

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Carol Pyle
10/3/2008 04:38:59 am

Amber,
Bless you my dear friend!!! I wish I knew how to help. What a mighty example you are to so many. Continue to pray. A loving Heavenly Father is listening. Keep the faith!!
Love, Carol

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Trish
10/3/2008 12:10:37 pm

Amber,
Say it isn't so! I will continue to pray for you and my church has you on their prayer chain.

I agree that it is so frustrating to wait forever to see the doctors and the drug reps get in! Have you considered trying any alternative method??

I tried to leave a message the other day about how all of your wigs look so cute, especially when you put your blue eye shadow on with your blue eyes. My daughter has blue eyes like yours and red hair so of course, I favor the red wig!

I know you are down and frustrated and scared. The mind is a powerful tool and you choosing to go with prayer will hopefully give your body some pain relief. I know I don't know you but because of my experiences I feel like I know what you are going through. You have a wonderful husband and support system and it will be okay......you have a great family to support you. I hope you feel the love surrounding you and empowering you!

I wish I could help!

Trish

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Marci
10/4/2008 01:49:48 pm

I am sorry for your news and pray always for the best. I understand COMPLETELY your frustration with the PA. I don't think she even reads the test results or knows what your treatment plan should be! You are doing the right things to be prepared. Keep fighting & we are behind you!

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10/5/2008 04:43:57 am

Bad news stinks. I also got some bad news after my liver resection - turns out they opened me up for nothing because there were all sorts of new peritoneal tumours, so now it's back to more chemo, blah, blah...

Presumably they are prescribing new treatment for you because they still think your cancer is treatable. I wish you all the best getting through this.



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Holly
10/5/2008 05:10:48 am

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Holly
10/5/2008 05:20:06 am

Amber,
I LOVE reading your blog!!! You are so inspiring to so many people. One of my favorite quotes is " Life is not measured by the number of breathes you take, but by the moments that take your breathe away." You are an example of enjoying every precious moment. You are in my thought and prayers. Thank you for being YOU..... I love you. Holly

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Jamie Hadfield
10/5/2008 01:09:11 pm

Dear Amber...
I don't even know what to say. I don't even know how to explain the way my heart aches for you and your family. Just know that I love you and that I pray for you everyday, without fail. I don't know why you, a young wife and mother, has to go through all of this. I just don't know. I just don't understand it. I just don't get it. However, and I don't know if this is any concilation, but know that your life and example have made ME BETTER. I am a more spiritual, faithful, and believing woman because of you. I owe you BIG time, for you have truly made me a better person. Love and hugs, Jamie

P.S. I am wearing the cutest bracelet right now! Thanks sooo much for the birthday gift. I was beyond humbled to see your card and the bracelet on my doorstep. I've been meaning to tell you thanks for a few days now, but I just haven't gotten to it. Shame on me! Please forgive me. Anyway, thank-you, thank-you my heart sings, my heart sings, MY HEART SINGS!!!

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Melanie G
10/6/2008 01:18:43 pm

Amber-

I too am without words! I am going to keep praying for you and your family because I don't know what else to do. Love, Mel

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Vita Jankowski
10/7/2008 12:16:25 am

Amber-

I am so sorry to hear about your bad news. Your positive thoughts and spiritual guidance is a blessing to everyone that reads your blog. I pray for peaceful days without pain for you and may the good Lord keep you in the palm of his hands. God Bless you and I will continue to pray for you.

Blessings~
Vita

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Chris Jones
10/8/2008 01:03:44 pm

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chris jones
10/8/2008 01:18:15 pm

Hi Amber, this is Jamie Hadfield's Mom. She told me about this blog of yours. I just want you to know that we think about you and your family all the time. You and your family are going through a terrible trial. I know that Heavenly Father is very mindful of you and loves you very much. Thankyou for what you have done for everyone around you. Everyone is on a higher plane because of the example of you and your family. Thankgoodness for our knowledge of the Plan of Happiness. You are one of Heavenly Fathers special daughters. Please know that you and your family are in our prayers.
Love Chris

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