My Life is a Vacation

I officially hate PET scans. It’s such an emotional roller coaster going in to see what is happening inside my body. I really try everything I can to be positive and optimistic as I mentally prepare myself including a ton of prayer. But even when I was feeling quite calm and at peace last week before my scan on Thursday, I know subconsciously that it’s coming and the muscles in my forehead were working overtime because I think I was furrowing my brow all the time. Can someone say Botox?? I need it! I have been googling how to get rid of wrinkles on my forehead… yah I know I have bigger issues, but I still care.

There are a number of things that have been confusing with this most recent appointment. First, I had my scan scheduled later than usual on Thursday (1pm) and my appointment with my doctor was at 3:30pm. So I knew the official report from my scan wouldn’t be ready and we would just be looking at images together guessing at the dark spots on the scan and the brightness on the uptake of the radioactive glucose. The second thing that was confusing (on my part, totally my fault) was that I was supposed to be fasting for 6 hrs before my appointment. Well fasting to me is not eating, drinking clear liquids, but without thinking I drank some green tea with lemon about 2 hrs before my appointment and chewed some non sugar gum (with Xylitol). I am trying not to beat myself up about this, but I kind of am. The tech said that I was supposed to stick to clear liquids. 😬 oops.

My blood sugar was slightly elevated when they did the blood glucose level check so they waited an hour to give me more time for my system to digest the sugars that I had unintentionally put into my body.

So we did the scan and then went directly to the appointment. I was feeling very positive that we were going to get a stable result! But when we pulled up the images and compared them with previous scans, the assessment was that we had progression and needed to make some decisions.

After my doctor said that, I was sort of like a deer in headlights, not quite processing everything else he was saying, but I did get the gist that we needed to do a biopsy to find out exactly what was happening. It is possible that it has transformed again. It is possible that I am no longer expressing CD19 (the antigen that the CAR-T cell therapy was targeting). There are a lot of possibilities… this disease is such a moving target and it is hard to know without getting a sample.

The good news is that I know Dr. Miklos is looking out for me. The clinical trial that he is running that targets CD19 and CD22 antigens has a long list of people wanting to get in and he told me that the next open slot is mine if I want it, that would be April 17.

Okay, well I really thought that changing my diet, juicing, cleansing was going to help me stay stable but apparently it didn’t… or did it?

The next day (Friday) my doctor sent me the report which actually measured all three tumors at essentially the same size and the FDG uptake (activity) of the tumors was overall less.

What??

Stable disease.

So that’s pretty confusing and I wished we had had those results from the radiologist when we were having the discussion in the office because I would have been doing a little dance right there with Dr. Miklos. But now I have doubt that the scan results are truly what they are.

I have been feeling so great, I can’t imagine jumping into another clinical trial right now unless it is critical that I need to. Especially when our family has just hit a stride from me being back from the last one. We have enjoyed a lot of good times these last 3 months! Two birthdays, hanging out with my buddy Shari, three Odyssey of the Mind winners, serving green eggs and ham and putting together a last minute Dr. Seuss costume, making Addison’s unicorn birthday cake, a sprained ankle, and cleaning out my pantry with the help of my Uber organized neighbor Maggie!

We have some decisions to make, but thankfully not today. Kaitlyn just texted me this verse of the day.

She is so sweet and God has shown me just how blessed I am through this experience even though it is hard.

We head home today and tomorrow we go on vacation to San Diego for Spring Break. I am excited to go to the beach and just play in the sand with the kids. But to be honest, I feel like the last few months of my life have been a vacation from having to think about hospitals, tubes, chemotherapy, face masks, germs, and everything else that comes with this disease.

Brandon and I spent our weekend in Monterey… it was so nice to have some down time.

I don’t know yet what we will be doing, but I do know that I will be praying for God to give us clarity and direction. He has always been faithful to orchestrate things in just the right timing, so I trust He will guide our steps. And as my dear friend Jamie always says, We will make every day count.

“But I will hope continually, and I will praise you more and more.”

Psalms 71:14

Onward and Upward.

Love,

Kay

27 comments

  1. Kay- you gave a wonderful assessment of what you’re going through and your feelings about it. I’m continually amazed at your resilience and your beautiful family. God bless you and your family! Enjoy Spting break by the Ocean.

    Liked by 2 people

    • Bev, Thank you for your faithful following of my journey. God is so good and has allowed us to turn the corner on this journey… finally! We had a great spring break in San Diego and now it’s time to really crack the code on reversing this disease!!!

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  2. Blessings Kay! Continued prayers being said for you and your family. God has not brought you this far to let you go, believing His best is always in store for you… Big Hug and Love Kay 💞

    Liked by 2 people

  3. Friend!!!!! I don’t even know what to say after your post. But I do know that I’m so proud of your positive attitude and strong determination. You are such an inspiration and I hope you know how much you are loved!!!! Keep on fighting, sister! And may God continue to pour good favor on you and your family in the days to come. Have fun in San Diego!!

    Liked by 1 person

    • Jamie, Thank you my friend, you inspire me and I realize just how lucky I am to be surrounded by people who are faithful believers and know the power of prayer! I hope you are also doing great, living life and loving normalcy!!! Love to you Trevor and the boys!!!

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  4. The Journey continues as does the quest for healing. It is such a learning process in so many ways.
    Physically, emotionally,spiritually.
    God is good. We continue to trust Him.

    Liked by 1 person

  5. Love you, Kay! You are an inspiration to me as I struggle with severe lower back nerve pain from the vertebral fracture in March 2016. I continue to pray for your recovery.

    Liked by 1 person

  6. Praying for you Kay — will not give up hope. I am continually blessed by your writing … this time so overwhelmed by Kaitlyn’s faith and words from God for you. Praying you will have a wonderful time in San Diego and all of God’s best poured out on you each day!

    Liked by 1 person

  7. You look stunning! And I’m so glad you are feeling great. That is God at work!

    Have a wonderful time in San Diego. I know you have Jesus is Calling. Absolutely love it and I just start over every year because I need the reminding. Today’s verse is Matthew 6:34 – Do not worry about tomorrow, for tomorrow will be worry about itself.

    Enjoy your vacation and trust that his plan will be revealed at just the right time.

    Love you lots! Leisha Kingston, Principal Missing Piece Consulting, LLC (972) 814-0447

    >

    Liked by 1 person

  8. Kay, thinking of you and your family! Do you know that people look at your courage, your life and your family and admire it? Sounds weird I know but you’re setting an example for all of us. How to live, how to love, how to believe, how to be vulnerable, how to share, how to wonder, how to be sad, how to be filled with hope, and how to be grateful.

    Liked by 1 person

    • Wei-Li, wow, that is genuinely one of the very best compliments I have ever received. I couldn’t have imagined that anyone would admire my life, but I am flattered to say the least at the idea that anyone would be inspired by it. Thank you for your kind words, I was quite inspired by you at the start of this journey and the manuscript you sent me, have you published that yet? I think you should. But i know you are busy with the other project! So proud of you Wei-Li!!!

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  9. Kay! last text from you was that the disease was progressing, so you can imagine how happy I am to see your blog. I may feel as happy, excited and relieved as you did when your doctor called you with the radiologist’s comments. I am so glad the news changed from what you were thinking it was. I have been feeling sad since I recieved your last text so I’m doing a happy dance for you right now (well in my head I am, since my foot is still in a wooden shoe!) God truly watching over you and your family and I know He will guide you to make the right decisions. Have a wonderful vacation, soak up that Vita D and splurge a little. I love you!!

    Karin

    Liked by 1 person

  10. Kay, it was wonderful seeing the pictures of your beautiful family. It is great that you had the time in Monterey with your precious husband and now are going to San Diego with your super cute girls. Enjoy the time together!
    You remain in our prayers and we are thankful that you are in such good medical hands. We know you are in The Father’s Healing Hands and we are still standing with you for that miracle. We love you, Kay!

    Ed and Jenny Suiter

    Liked by 1 person

  11. Hi Kay so nice to read your post. I am happy that you are feeling positive and willing to do what ever is necessary to get well. Thank God for your strength and strong faith. You are also blessed to have such a loving family for support. I hope you have a nice vacation and come home feeling refreshed and relax. Praying without ceasing for you and your family. Love, Diane

    Liked by 1 person

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