Sunday, May 21, 2017

One Year Later



Today marks one year since I started on the axi/pembro clinical trial for sarcomas! This has been such a hard year, but it has been so rewarding. It all gets jumbled in my mind so easily, so I'm going to bullet-point it:


  • My cancer was metastatic (stage IV) a year ago with tumors in my heart, liver, spleen, spinal canal, right breast, right lateral chest wall, right deltoid muscle, left infraspinatus muscle, scalene muscle, subscapularis muscle, scalp, 2 vertebrae, right humerus, left hip, and brain. Now there is only 5mm of cancer left in all of my chest/abdomen/pelvis!! (don't know about the brain, haven't had that scan yet)
  • My thyroid bottomed out a few months into the trial because of one of the treatment medications, causing lots more fatigue and depression. After several months of medication adjustments, my thyroid is back in normal range! Right now I feel the best that I have felt in the last year of treatment! Praise!
  • My heart function was starting to wain, but after the 5cm tumor in the left ventricle disappeared, those muscle cells are starting to regain some of their function. It's looking like my heart function could be low-normal at this point! That's a HUGE deal for me moving forward.
  • I taught A&P as an adjunct at Ezell-Harding, John helped bring us through a hard year at church, and CJ managed to put the terrible threes behind and has turned into a (mostly) lovely, bouncy 4-year-old. 
  • It was also one year ago that I lost my hair. Before I started the clinical trial, I had to have brain radiation for the 23 tumors they found there, causing me to lose my hair. Thankfully, neither of the treatments that I am currently taking affect hair growth at all, so it has been able to grow back! It was long and wavy before, a lot like CJ's is now, with the front really curly and the back much straighter. Now it's all really curly!
  • One year ago the clinical trial protocol required that we travel every Friday for lab checks, seeing the doctor once every 3 weeks and having scans once every 9 weeks. Thankfully, we only had to maintain that schedule for the first 13 weeks. Now we fly every 3 weeks to Ft. Lauderdale on Thursday night after a half day of work, have clinic appointments in the morning, and fly back to Nashville in the evening. Every third visit (9 weeks) we fly down one day earlier for a day of scans.

One year ago we realized there was no way we were going to be able to pay for the 42 flights it would take for participation in this clinical trial. We opened up a fund for travel support and you guys blew us away with your generosity, donating over $16,000 in less than a week! That was so humbling and inspiring to us- we saw the hands and feet of Jesus carrying us along in that dark time. You gave us hope and a future. YOU did that. And I cannot say thank you enough for your kindness and generosity.

We put those funds into a separate checking account to pay for our flights. We used American Airlines to fly directly to Miami during weekly travel and while I was exhausted after treatments. We now fly Southwest to Ft. Lauderdale, which is considerably cheaper. We are racking up points for ticket purchases, and are well on our way to a buddy pass!!

The funds that you gave have paid for all of our airfare in the last year. We use those funds only for airfare, as we want to be good stewards of your money. John and I are happy to pay for all other medical expenses and travel incidentals as we always have. Carley Jean comes along with us when we are gone for a few days in a row and has made besties with everyone in the clinic. She has made us very popular for the times she is with us, and very regular for the times she stays with her Bobbie!

One year later the sentiment that resounds in my mind and heart is a simple, yet overwhelming: Thank you. I say it to God as often as I can, usually just as a "thank you, thank you, thank you God," because the entirety of the thing is too overwhelming to think through every time I pray. Thank you to the family and community that have surrounded us and made this all possible. Thank you to the friends who come watch CJ every Monday while I work. Thank you to the teachers who pour love and affection and truth into my little girl even when I can't. Thank you to the friends who put up with our changing lives and schedules, who stuck around even when it got really hard.

Thank you to YOU for sharing this amazing story of redemption with me. Isn't it amazing to see what God is doing?! He is healing bodies and hearts and souls with this version of the same story he has been telling for ages: I made you, I love you, I redeem your messes, I want you living in me. It's so powerful. And it's so humbling to see that story in my life. I hope you can see it in yours.







5 comments:

  1. Thank God for your courage and for the good news. I mis-typed - "god news" - maybe that wasn't really a typo.

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  2. This is such a GREAT REPORT And Testimony that you are sharing! I've been praying for you and following your journey since I first saw a request for prayer for you. I can't even remember who shared it...possibly Leslie Bowers? Whatever, God is so good and he knows and cares about every detail of your story. He sees the Bigger Story and WOW, I am seeing it now through you. Prayers Continue! your Sister in Christ, located in Nashville TN...

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