Wednesday, December 17, 2014

MDA Visit - Bad news

This will be a long and heavy post I imagine. This is going to be one of those posts that is actually more for me to use as a processing mechanism than anything else. So here goes...

Sunday

Brad and I drove to MDA Sunday evening after a wonderful weekend with friends visiting and a morning of worship that included Brad and I sharing our testimony with our Sunday School class. It was one of the best weekends I've had in a while; it included me laughing so hard that my abs hurt (or the area that used to be my abs). I woke up not feeling so good Sunday morning (emotionally and physically) but God was so incredibly faithful to give us the strength to still speak in class. At the end of the class, everyone prayed over us. It was very moving.



One of the partners at the company I used to work for offered for us to stay in their guest house while in Houston. It was magnificent. After all the hotels, nice homes, and places around the world we have travelled, I think I can say this was the nicest, most comfortable place we have ever slept. Not having kids to take care of overnight was great for getting a really good night's sleep both evenings in Houston.

Monday

Despite my tumor(s) growing over the past month or so, I had the most wonderful peace driving into MDA on Monday morning. Thank you to everyone that was praying for us. I felt so calm and actually very happy for most of the time spent at MDA.

Monday was surprisingly really fun. I got to see a college friend that works at MDA, a fellow breast cancer friend from Dallas that had appointments the same day as me, and a researcher post-doc friend that always gets me good data. I actually had more meetings on my social calendar than medical appointments, so it was easy to believe that MDA is a totally normal place for hip 20- and 30- somethings to hang out.  The only not-so-fun part was during the ultrasound when I watched the technician find many dark spots and take measurements of a whole lot of them. For my primary tumor she actually had to zoom out to see it. :-(

Monday evening was such a blessing to us- our hostess had made homemade lasagna (made with sausage from an elk her husband had killed!), set the table, and given us wine from her cellar. Her and her husband went out to a concert for evening and gave us a rare night alone to just be together- what a gift!  Brad and I were able to have a wonderful date together and a very genuine, heartfelt conversation about hope, faith, love, trusting our God through this, and considering all possible outcomes.  It felt great to have a long, safe, & honest conversation that acknowledged the chance that I might not make it through this alive.  It helped prepare us for what was coming the next day.



Tuesday

The next morning our lovely hostess got up early and made us breakfast before heading out to a meeting with the CIO of a $10B company. Can I please be her when I grow up??



My appointments weren't until the afternoon so that allowed me some time to pray and prepare my heart for the day's appointments. I again felt a wonderful peace as I prayed that morning. It was a gorgeous day in Houston, so that definitely didn't hurt!

The first person that met with us was the surgeon's Physician's Assistant. She ended up having to be the bearer of very bad news. You probably already have caught that I was diagnosed with essentially the most aggressive form of breast cancer - IBC, triple negative, with 96% of my cancerous cells replicating. So within that group you can have four categories of responses to chemo - 1) All the cancer is gone (that was the pCR we've all been praying for), 2) the cancer decreased somewhat but not fully gone, 3) the cancer stayed the same, or 4) the cancer actually progressed over the course of chemo.

Unfortunately, mine was the fourth option- I have had "significant disease progression" after the six months of chemo. This is the worst thing I could have heard from the doctors yesterday. They believe it may have spread to my other organs and so I have a PET scan tomorrow (Thursday) to investigate that. My breast is full of "satellite tumors", the primary tumor has close to doubled in size, and I have more lymph nodes involved both in my armpit ("axillary") and around my collarbone ("infraclavicular" and "supraclavicular"). The single good piece of news was that there were no "internal mammory" nodes found (under my breastbone).

So now they have started to treat me the same as a metastatic patient: taking surgery off the table for now and putting me on a different combination of chemo drugs with the hope of controlling the growth of the disease. There is a chance that the new chemo drugs could control my cancer better than the ones I've been on and I could move on to surgery later. The problem is that in order to do surgery I would have to be able to be off chemo for 7-8 weeks.  If the cancer is not well controlled (i.e., gone or almost gone) before taking an 8-week break from chemo, then there is a significant chance of it cropping up somewhere else.

Where do we go from here? 

The next steps this week are PET scan Thursday (with results on Friday) and two new (for me) types of chemo starting ~Friday (hopefully). We will try two rounds of chemo over six weeks and see if they work. We will know pretty quickly if it is working since my cancer grows at the speed of light. At the end of six weeks if it looks like its working then I will keep going on it; if not, we switch to something else. (Each time we switch, the probability of it working goes down.)

Brad and I were devastated by this news. My prognosis now is pretty rotten. All I could think about when they were telling me the news was the boys and Brad. I'm afraid that there is now a very good chance that David and Noah will have no memory of me and will grow up without a mother. This thought is extremely hard for me to deal with. I hate thinking about leaving Brad to handle raising two small boys, while working full-time, on his own. I hate thinking about leaving Brad without a life partner to depend on and enjoy life with. I feel badly for my parents potentially losing a child. I feel badly for my close friends - especially some friends who have their own crises they're going through right now.  I wish I was supporting them through their struggles instead of piling on my own. I am so sorry to the people that have been keeping up with the blog that I can't report better news to you, that I can't strengthen your faith through the story of a miraculous healing. I am so, so sorry.

On the way out of the doctor's office I was crying and saying to Brad, "I guess God has chosen not to work a miracle in my life. He hasn't heard our prayers." We got on the elevator to go back to our car and were hugging while I was still crying a little.  One other couple was riding the elevator with us. As we got off the elevator the other couple asked if they could pray with us.  We accepted - we will take all the prayer we can get.  We had no idea who they were, and actually didn't even catch their names.  Then, as the gentleman was praying, he prayed a word-for-word response to the statement I had made not five minutes earlier.  He prayed, "Lord, give this woman the courage and faith to know You are big enough to heal her and that You are a God of miracles, and You can work a miracle in her body.  Thank you that you hear our prayers."  Then, after the prayer, he looked right at me and said, "hold on to your Faith.  God is still in control."  Brad says that if we have ever in our lives been visited by literal, physical angels, it was that moment.  To have complete strangers answer back a faith-affirming response not 5 minutes after I uttered a statement of hopelessness and despair... even if they weren't angels, then it is an amazing testament to fellow members of the corporate Body of Christ being sensitive to the prompting of the Holy Spirit and encouraging us with words straight from the heart of God.

So now I struggle between hoping/praying for a miracle - to still be cured despite immense odds to the contrary - and the scientist/realist in me that knows what my future looks like statistically. I am still hopeful that I am not metastatic (yet) and that the PET scan tomorrow will come back negative. I want the new chemotherapy to work amazingly well, allow me to have no evidence of disease, and go on to surgery. I want to be cured and live a long and wonderful life with my family. I want to host a massive party for David at his 5th birthday. Lord, please allow me these experiences.

My "plan" for now is to take it one day at a time. Each day that I wake up and still have breath in my lungs, I'll ask God to use me for His will and for His glory in that day. Instead of having some grand plan of the perfect treatment and associated response (i.e., that flow chart I built), I will try my best to "go with the flow".  Anyone that knows me, knows this will be incredibly difficult for me. I will keep asking "what's next?" and praying to Jesus that there is still a "next" to try.  God is still good, and He is still in control, even in desperate moments when I don't feel him close by.

So today I woke up and had a pulse. I feel healthy and have no symptoms. Today I will be thankful for those things, and I will be grateful for every single day that God allows me to live.

16 comments:

  1. Ashleigh, I will be praying for many, many more "nexts" for you. Thank you so much for your incredible faith, I know that God is good and in control, and that He is closer to you now than ever before. It feels so terribly small and insignificant just to leave a comment at a time like this - but the Holy Spirit is interceding with groans too deep for words...and He will care for you.

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  2. We are listening and feel so much for you and your family Ashleigh. We will continue to keep you in our prayers. - Tami & Dan Shinedling

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  3. Ashleigh you make me laugh and cry but through it all I see your amazing faith shine through and you are such a witness to our Heavenly Father's steadfast LOVE to all you come in contact with. I pray for strength and peace for you during your PET scan today (and good news) And for more elevator Angels in your life! I love you sweetie! Debbie

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  4. We are praying Ashleigh. Your transparency and faith are so wonderful. I pray that God continues to encourage you through Angels and fellow believers. God CAN work a Miracle in your body! We love you and are praying for that very thing!

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  5. Ashleigh- Your faith and hope have strengthened my own as I've followed your journey here. We have fasted and prayed with you both when you asked on the blog and at other times. You are in our hearts and minds and I just wanted you to know. I pray that the Holy Spirit will continue to be a comforter to you and your family.

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  6. we are praying for you Ashleigh and your family.

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  7. Ashleigh,
    I know that I am just some random stranger from out in the internet somewhere, and i don't even know really how, but I stumbled across your blog today. Having had a friend who had IBC, reading what you wrote was a natural thing. I will be praying so much for you, but especially today--and every day--that God will lavishly your out His presence and His peace in ways that are palpable, for you and your whole precious little family. Hebrews 11 gives us the "hall of fame of faith," and what I hope that you can get from that (and subsequent chapters) is that those were regular, BROKEN, people, who did what they thought they needed to, with their sights set on their ACTUAL home, not on the earth. I hope that this gives you comfort. God enabled them to do so, He can/will do the same for you! :)
    Love, in Christ,
    ~sarah

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  8. Ashleigh,

    Hello (: I went to high school with Brad, and have been following your blog since Nicole Felice shared it with me. My husband and I have been praying for your healing and comfort and will continue to do so. The Lord has used your story to change my heart and for that I am thankful. He is surely using you for His works. We will continue praying for you, Brad, and your friends and family. Thank you for sharing your story.
    Kirby

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  9. Reading about the couple in the elevator, it's hard not to think about Hebrews 13:2 "Do not forget to show hospitality to strangers, for by so doing some people have shown hospitality to angels without knowing it." Praying for you and your family this morning!!!

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  10. I continue to be amazed at you and Brad's faith. I continue to pray for your body to heal. I am hopeful for this next round of chemo.

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  11. God doesn't exist you fucking cunts. Here let me pray to the Easter bunny, probably have better chance of getting an answer.

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  12. افضل شركة تنظيف خزانات ومنازل وشقق بالمدينة المنورة شركة غسيل خزانات ومكافحة حشرات بالمدينة المنورة ونقل عفش بالمدينة المنورة مؤسسة صفوة المدينة
    شركة غسيل خزانات بالمدينة المنورة

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  13. الشرق الاوسط من اهم شركات نقل العفش بالدمام متحصصه فى نقل عفش واثاث بالدمام ونقل العفش بالخبر كما انها توفر شركة نقل عفش بالجبيل والخبر وشركة نقل عفش بالقطيف والاحساء وجميع خدمات نقل العفش والاثاث بالمنطقة الشرقية بارخص اسعار نقل عفش بالدمام وتقدم ايضا شركة تخزين عفش بالدمام والخبر
    شركة الشرق الاوسط
    شركة نقل اثاث بالدمام
    شركة نقل اثاث بالخبر
    شركة نقل اثاث بالجبيل
    شركة نقل عفش بالخبر
    شركة نقل عفش بالقطيف
    شركة نقل اثاث بالاحساء
    شركة نقل عفش الجبيل
    شركة نقل عفش بالدمام
    شركة نقل اثاث بالجبيل
    شركة نقل عفش بالخبر
    شركات النقل البري بالدمام
    شركات نقل العفش بالدمام
    ارقام شركات نقل العفش بالدمام
    ارخص شركة نقل اثاث بالدمام
    شركة تخزين عفش بالدمام
    شركة نقل اثاث بالخبر

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