Thursday, May 28, 2015

"Widespread metastatic cancer"

Those were the summary words from my PET scan results today. I can barely believe it. It feels like a horrible nightmare where I just can't seem to wake up. Lord, please let me wake up from this nightmare.

Simply put, I have THE most aggressive, fastest growing breast cancer possible - inflammatory, triple negative, metastatic, with 90%+ of my cells actively replicating. I went from a completely clear bone scan three weeks ago to too many bone lesions to count. The biggest being 4cm on my sacrum (most likely contributing to the back pain that has been keeping me up at night).

My cancer was also found in my lungs - in the pleural space. This is called pleural effusion. If this is how I end up dying it feels like you are drowning and you die by finally not being able to get in a breath - pleasant isn't it? This is the side of breast cancer no one ever tells you about.

The doctor wouldn't give me a timetable on how long it would take me to die if we did nothing, but told me essentially to do the math given what I know about how agressive it is: it would be very, very soon.

And speaking of doing nothing, the second blow was this: there are no promising/standard of care options left for me. So we very well may do more chemos and trials and have none of them work. None of them are even particularly likely to work. In the past I would half-jokingly say that if and when I became metastatic I would die quickly because good tools to fight this stage simply don't exist. When I used to say that, I (1) honestly didn't think this day would come and (2) thought something magical would happen before now - that there would be some option I just didn't know about or some new treatment coming out that would be able to extend my life. When the clinical trials group at the top IBC clinic in the nation says they have nothing for you, you know you are pretty much screwed.

I have a friend coming over tonight to help me evaluate and prioritize the handful of trials we have found that are in stage 1. A stage 1 trial means they are testing a specific protocol to see if it is safe in humans, unsure if it will actually help or not, and may even be potentially dangerous. We are looking at trials all over the country. Please pray that we would have wisdom to pick the right trials to pursue and that there would be drugs out there that would be that "magic bullet" every cancer patient dreams of. And that we could find and get in the right trial very, very quickly. My cancer is spreading before our eyes.

Tonight (May 28th) my church is holding a prayer vigil at First Baptist Allen (on Main/McDermott & 75) from 6:45-7:45pm. We are still in Houston but will try to facetime/skype in. Anyone is welcome to attend.

Thank you for your prayers and support. We will need them greatly in the coming weeks for as long as I have left on this earth. <3

45 comments:

  1. You have my heartfelt prayers, Ashleigh. I have a small altar in my bedroom and I pray there every morning, making requests, and every night before bed, giving thanks for good things that happened during the day. I will go to that place and say a prayer for you right now.

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  2. Am holding on to you finding that magic silver bullet tonight. ((Hugs))

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  3. In our prayers
    Marion & Jon Kling

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  4. Ash,

    Praying for wisdom for you and Brad. Sleep and rest over you tonight. And absolute restoration and alignment of every cell in your body by our mighty God and Healer in the name of Jesus. I know He can do it - fully. Love you sister

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  5. Praying my heart out for you!

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  6. Will add you to my prayer list.

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  7. Ashleigh - you are all in my prayers tonight, as you are every night. I pray that God gives you the wisdom and guidance to choose the right path. My heart aches for all you continue to go through. Know that the L&D team is constantly praying for you at Presby.

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  8. We are praying for you - for wisdom as you search for trials, for wisdom for your doctors, for strength, endurance, and supernatural peace for you and your family, and for a miraculous complete healing. May God hold you all very close.

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  9. Praying for you - hard!! God is good, even when cancer is everywhere. We are heartbroken for you and your family. We love you and Brad to pieces. Praying for wisdom, strength, faith and that you would deeply feel His love through this.

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  10. No words to say except I'll be praying for you, Brad & the kids.

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  11. Praying for you and your family. You are an amazing strong woman. You deserve a miracle.

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  12. Praying for you and your family. You are an amazing strong woman. You deserve a miracle.

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  13. Always in my thoughts and prayers!

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  14. Praying for you Asheligh!

    www.in-due-time.com

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  15. I am so sorry Ashleigh. I'm praying for you constantly.

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  16. I'm so sorry Ashleigh. I'm praying for you and for all in your situation. May God hold you close xo

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  17. I'm so sorry. Sending much love and prayers to you and your precious famiky during this time

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  18. I'm SO so sorry. Praying for you regularly as you fight. <3

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  19. My best friend Julie is navigating your exact same fight, only a few steps ahead of you. She was in an immunotherapy trial at MD Anderson but was released two weeks ago b/c she was too sick. HOWEVER, she is experiencing a miracle right before our eyes...at home~
    Praying Psalm 91 over you, sweet sister in Christ!

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  20. Praying from NY. As a mother of young children, your story has touched me more deeply than you could ever know.

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  21. My husband and I are keeping you in our prayers. We truly hope you get that magic bullet - and that you're able to get every day and moment possible with your little boys and Brad. Sending all our love from NYC.

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  22. Praying for peace & wisdom for you & your family as you navigate this journey.

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  23. Prayers from California.

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  24. I will be praying for you and your family

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  25. We have been praying and will continue to pray for a complete healing for you. Praying for your parents, Brad's parents, brother and sisters and your family members. Praising God for your healing.

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  26. I am so, so saddened by your news. No words for you except that You have my, and so many others hearts and minds directed toward you and your health. Many, many prayers coming your way.

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  27. I just came across your blog and I am praying. I have walked the stage 4 cancer journey with my husband just this year and have 5 young children. I know the weight of news like this and am praying grace upon grace through Jesus for your whole family. My heart aches with you in this as you walk this painful road. I long for the day when all the evil in this world is undone.

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  28. I am so sorry to hear this. I cannot even imagine how you and Brad are feeling. Brian and I are thinking of you and really hoping for that miracle.
    - Anjali

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  29. Many prayers from Atlanta.

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  30. Prayers for you from North Carolina.

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  31. Ashleigh- You and I have never met, but I stumbled upon your blog a few months ago and have followed your story ever since then. I truly wish your bone scans had a different result. As you look for different trials etc, please explore the options that palliative care can offer as well. They can help you live the very best life RIGHT NOW and permit you to better enjoy the time you have with the people you love.

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  32. Praying for miracles and they do happen. Please investigate acupuncture - as I have seen it do things that modern medicine cannot explain but cannot refute.

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  33. http://www.acupuncturetoday.com/mpacms/at/article.php?id=28310

    http://www.houstonacupunctureherb.com/acupuncture_cancer_houston_tx.htm

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  34. You and yours are in my continued prayers....FBC of Allen member(Evelyn Corn)

    2 Corinthians 12:8-10 ESV

    Three times I pleaded with the Lord about this, that it should leave me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.

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  35. We cured my moms stage 4 "incurable" cancer in 3 months with concentrated cannabis oil. Please do a search and see how many people have had the same results. The Bible clearly says that God gave us all the seed bearing plants to help us (Gen 1:29)

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  36. Praying for you right now. For a miracle, for peace, for comfort, for joy in every moment with your family.

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  37. From a stranger to a stranger. I am praying for you. My heartfelt prayers for you and your family.

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  38. So heartbroken for you but turn to Jesus on your behalf and ask for healing. I am no cancer expert, but have learned through Maximized Living that you should cut out ALL sugar as cancer feeds on it. Peace, rest, guidance, healing in Jesus' name.

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  39. So many are praying for you Ashleigh. I have a friend, Tracy, that was diagnosed with breast cancer in 2008. She had a double mastectomy, chemo, and radiation and was declared cancer free. Then it came back. More treatments. Then it came back again, and this time it had metastasized to her lungs. She was given little hope and we thought that Christmas 2012 was going to be her last Christmas. And now it's 2015, and she is still here, and she feels better than she has in years. Medically, there is no reason she should still be here. But God doesn't listen to what "should be medically". GOD LISTENS to his praying people, and people ARE praying!!!! Andrea is one of my very best friends, and I am so glad that she introduced your story to a bigger audience so that you can have more prayers! xoxo, Sheaffer

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