Sunday, January 26, 2014

PET Results

"I am learning to trust the journey even when I do not understand it"

This was a quote I found today and I think it pretty much suits my current situation.  I had my PET scan last Tuesday.  If you remember from a year ago, I am always looking for signs.  Well, Tuesday I got a positive sign after the scan.  I had the day to myself thanks to my mother-in-law for watching Ryan since I was radioactive and had strict instructions not to hold him, hug him, swap spit with him, urinate on him, etc.  So after the scan I decided to venture over to Walmart for some groceries.  I am not a Walmart person, but we had a gift card from some Christmas returns so I figured I would use the card on groceries.  As I was shopping, I ran into Pastor Dave from the Lutheran church I have joined.  I am a new member to the church and most there do not know about the cancer, but he does.  So we chatted for a bit and after I walked away, I was so giddy!  It just felt right.  I felt that this was my sign that everything was going to be A-Okay!  Wednesday my parents came in to help with the kids and to keep my mind busy.  That was very helpful since I do not do good waiting for a Christmas surprise, let alone waiting for sentencing.  (I have decided that waiting for PET scan results must be what it is like for a convicted murderer to hear their prison sentence)

Don and I met with Dr. Phillips Friday evening.  Note to self, make an early morning appointment going forward....Anyhow, she came in and informed us that my PET scan was not that different than my one in August, but there were some changes.  My right breast was showing lit up, which it did not in August because I discovered the cancer was back pretty quickly.  So I was expecting to hear this - also because that is where the pain is so this made sense.  She then told us that there are 2 lymph nodes around my lungs that are showing cancer.  She did say that the 2 small spots that they saw on my lungs back in August were not lit up, so it is safe to say that if that was cancer, the Xeloda wiped those out.  Or it could just confirm that they are / were scar tissue from radiation.  Next she informed us that there was also a "hot spot" on my left hip bone.  Dr. Phillips said this spot is so small I would not know it was there by pain or any other symptoms.  So that is under "watch", but was not determined to be cancer in my bones at this time.  Don and I went over the actual scan and saw the spots she was speaking of, which I think was helpful to us to know exactly where she was talking about.  I asked Dr. Phillips what this exactly means as far as my prognosis and if this is considered "bad news"- it is to me, but I wanted to know / hear from her, it could be worse.  She explained that it is not in my liver, lungs, spleen or other organ so that is good and that there are plenty of other drugs out there for us to try.

We then discussed potential drugs for me to go to next.  Xeloda was very easy for me.  Not only could I tolerate it, I also was able to stay out of the hospital / cancer center as much as possible and I could hide the illness from outsiders.  So she started by telling me, the convenience is now out the door as we move on and so is the slim to no side effects.  Her and Dr. Nanda (Triple negative expert at the main University of Chicago Hospital) felt that a trial that has one open spot looked like the best option for me.  The trial consists of 2 drugs by IV given weekly - Gemcitabine and Carboplatin.  I have been on Carboplatin before and handled it fairly well minus the blood transfusion I needed after my first cycle.  The third drug is an oral medicine which is the drug that is under a clinical trial.  It is called Mifepristone.  This is taken on day 1 and day 8 of each cycle.  A cycle is 2 weeks on and 1 week off.  So going to the hospital once a week for 2 weeks for the first 2 drugs and then a rest of 1 week.  The IV drugs are known drugs for Stage 4 breast cancer and specifically Triple Negative.  The oral medicine is under trial to find the safest dose when given with the other 2 drugs.  It is an approved drug by the FDA, just is not proven to be a drug used for breast cancer.  So my consenting to the trial, I will receive the oral drug, I just do not know the dosage amount that I will receive until I start.  Sounds a bit scary, but she stated we can make adjustments if we need to so their plan is not to cause me to OD.

Obviously this is not the news we were hoping or praying for and I have sunken into a depression of some sort, but I have not given up.  I'm sad because I can no longer shelter Justin from what is going on.  I will lose my hair, which makes it obvious to him and everyone else that I see at play groups, church, Justin's school, the grocery store or even myself that I am sick.  But mostly for Justin.  Ryan is still little enough to hopefully not realize anything, but Justin gets it.  So if you see him out and about, a smile, a hug or a sucker would be nice!  We also have him seeing a social worker at school.  Since this isn't my first bout with serious news, I keep reminding myself that the beginning is always the hardest part.  There are so many unknowns with how much, how often, what do we need, what if this, what if that, etc.  Then once I start going I get out of my funk and can usually keep up with the day to day.  So my hope is this funk is short lived and I can get moving as soon as possible.

Tomorrow I should hear from the clinical trial coordinator to consent to the trial and will then hopefully hear when I can start.  Some trials require a "wash out" period.  This means being off of all drugs for a certain period before you start the trial.  I'm hoping this is not the case and I can get this going, but if not, I will do my best to enjoy the next couple of weeks.  I appreciate all of the kind words, cards, texts etc.  It helps to keep going when you know you have so many caring supporters out there!  As far as what we need - I do not know right now, I'm finding it hard enough to figure out dinner!  I know we will need help with the kids and possibly meals on my crummy days with chemo, but until I start, I do not know when or if I will have crummy days so for now, keep your phone on:)

We can not thank you all enough for your support and prayers.  Please keep them coming!




  1. Well you can count on Nicole and I to be on Team Amber. Let us know what and when we can help.
    Todd DiCarlo

  2. Amber, you don't know me but I am a childhood friend of your dad's and a breast cancer survivor. I have been keeping up with your blog and am so very proud of your positive attitude and hope you continue to fight the fight. I believe that holding on to the positive attitude helps in your recovery and the people who love you. I will continue to keep you in my prayers.

  3. Amber I am so sorry to hear that you and your family are having to go through this. I do pray that you get well and can beat this! You were always a strong girl growing up and always had a smile on your face! If there is anything I can do, whether it's help of any kind or at least someone to talk to, I am here for you and your family. Keep your chin up sweetie, God will walk beside you on your journey to recovery and keep you safe!!
    Your friend,
    John Halley

  4. Amber, I can remember you as a child and you were always a go getter!!! I have faith that with your positive attitude, your brave spirit, and GOD as your pilot, you will beat this. I will keep you in my prayers daily, and I wish you and your sweet family all the best. Dear GOD, please hold Amber close to you and guide her through this tough journey. Give her strength to keep going, courage to keep fighting, and the FAITH to always know that you are in control and will do what is best for her at all times. Lord I pray that you will put a hedge of protection around Amber and her family, and keep them safe from anything that satan may use to discourage them. Give the doctors the wisdom to do everything they can to make Amber well without any harm in the process. I pray these things in your precious name.....Amen!!!!!

  5. Amber,
    None of this is easy. I know! I'm always repeating God's promises to myself when I start getting depressed about my health situation. Keep them on post its around the house to remember that God never leaves you nor forsakes you! God love you! He wants the best for you!
    In John 10:10, Jesus came to give us abundant life-spiritually, physically, mentally and emotionally.

    Start by speaking these verses aloud. Meditate on them. Believe them. That’s how we
    release God’s power to heal—by speaking His Word and trusting His ability and His
    willingness to heal all of our diseases.

    Psalm 103:1-3
    BLESS (AFFECTIONATELY, gratefully praise) the Lord, O my soul; and all that is [deepest]
    within me, bless His holy name! Bless (affectionately, gratefully praise) the Lord, O my soul,
    and forget not [one of] all His benefits—Who forgives [every one of] all your iniquities,
    Who heals [each one of] all your diseases.

    Psalm 118:17
    I shall not die but live, and shall declare the works and recount the illustrious acts of the

    Psalm 147:3
    He heals the brokenhearted and binds up their wounds [curing their pains and their

    Proverbs 4:20-22
    My son, attend to my words; consent and submit to my sayings. Let them not depart from your sight; keep them in the center of your heart. For they are life to those who find them, healing and health to all their flesh.

    Exodus 23:25
    You shall serve the Lord your God; He shall bless your bread and water, and will take
    sickness from your midst.

    Proverbs 3:7-8
    Be not wise in your own eyes; reverently fear and worship the Lord and turn [entirely]
    away from evil. It shall be health to your nerves and sinews, and marrow and moistening to your bones.

    Jeremiah 17:14
    Heal me, O Lord, and I shall be healed; save me, and I shall be saved, for You are my praise.

    Matthew 9:20-22
    And behold, a woman who had suffered from a flow of blood for twelve years came up
    behind Him and touched the fringe of His garment; for she kept saying to herself, If I only touch His garment, I shall be restored to health. Jesus turned around and, seeing her, He said, Take courage, daughter! Your faith has made you well. And at once the woman was restored to health.

    3 John 1:2
    Beloved, I pray that you may prosper in every way and [that your body] may keep well,
    even as [I know] your soul keeps well and prospers.

    Mark 16:17-18
    And these attesting signs will accompany those who believe: in My name they will drive out
    demons; they will speak in new languages; they will pick up serpents; and [even] if they
    drink anything deadly, it will not hurt them; they will lay their hands on the sick, and they
    will get well.

    Praying for your entire family and healing!

  6. Praying for you and for your sweet family.

  7. Hey lady you can count on me and Rob to keep our prayers coming your way! Please don't hesitate to reach out if you need me! Love and miss you!