clinical trial update.

How valuable is your health to you?

This is the question I keep coming back to while Josh and I are in Florida. How valuable is your health to you?  Is it worth not being home, away from family and friends, away from my sweet Wylie pup? Is it worth all the plane flights, hotel stays, all the costs that come with that? In theory, wouldn’t you say yes, of course my health is worth sacrificing all those things. But when you’re living it, it seems so much harder than the theoretical plan in your mind. Because now your schedule is not your schedule. I’m always living by a hospital schedule and doctor’s appointments, but now it’s different. The appointments aren’t just dictating my days; they are dictating my travel plans, when I can book a flight and board a plane to come back home. Clinical trial land is so much different than regular chemo treatment life. So specific in what the scientists need, the timing, everything.

Are we doing the right thing, putting our faith in this new drug? It involves making arrangements to come back to Florida once a week for a couple months. And I probably shouldn’t travel by myself in my health, so that’s not just one plane ticket but two. Or do you choose to just live there in Florida for a temporary period of time?

I know this is all temporary. The first two months of this trial are the most demanding of my time. I have to come back once a week for the next couple of months for bloodwork. The first day I will be fasting, taking the medicine, and then bloodwork. The following day I’ll be eating a high-protein meal, taking the medicine, and then bloodwork. This is done all to see how taking food with the drug interacts with the medication. In my mind, this seems almost ridiculous to travel back to Florida for: bloodwork, really? I get that done all the time just 15 minutes away from my house, can’t we just do those specifications there at Nationwide Children’s Hospital? But no, this is science, a clinical trail. Specificity and sameness across all patients is needed to conduct these medical experiments. And I am a medical experiment. But I’m human also and can’t be confined to a lab or notes. My body may be examined and scanned, poked and prodded but what about my heart, my personality, my spirit, my soul? They can’t be contained to these experiments and crave experience instead.

I know I should grasp strongly onto gratitude, but I feel like I’m slipping and going to fall any moment. I’ve cried every other day while we have been here, remembering what I am missing from home. Every time I see a dog, I miss my Wylie. (Who knew you could miss a pet so much?) I don’t know what is wrong with me. I should be grateful. Grateful that I can even make plans happen to get down to Florida. Grateful for all the family and friends who financially supported us to get down here and stay here even longer than planned. Grateful for the new drug itself, it’s hopeful promise of health. Grateful for Dr. R and Soha who have moved heaven and earth to get me started so quickly on this clinical trial, asking favors to get scans done in record time for me. Grateful that I’m not alone but have patient Josh with me, who is willing to endure long boring hospital days without complaining. Grateful for some fun at Disney and the beach. Grateful for all the behind-the-scenes prayers that I don’t even know about for this trial, for my health.

Help me to hold onto these things Lord, and not the things that I am missing.
Help me to remember that this is all temporary.
Help me to remember why I am here: this clinical trial, the hopeful promise of health. 

The first day of the clinical trial medication, Josh and I prayed in the waiting room. The first time I took the four pills, I prayed before swallowing each one. Oh God, please help me was all I said before swallowing them whole. Such a simple prayer filled with so much desperation, pleas, helplessness.

Today is day 3 of the clinical trial drug, and I’m feeling it move within my body. After so many years, I can even determine pain that comes from cancer growth. Amazing. And now I’m feeling the reverse; I’m feeling cancer nodules being gripped by the new drug and slowly dying within me. I feel my lungs and their new heaviness instead of cancer pain. I feel my right shoulder and arm feeling as if they are “asleep,” and I’m welcoming this strange feeling over the unbearable and uncontrollable pain I had been experiencing. I’m feeling a slight bit of hope. Help me Lord to welcome it and hold onto it.

Josh and I thankfully have a four day break from hospital visits. Pretty much everyday this past week we were at the Moffitt Cancer Center. So now I can blissfully pretend we are here in Florida for vacation instead of cancer treatment. I want to go to the beach and just read and listen to the waves and fellow vacationers. I want sunscreen and laying on towels and looking at shells. I want good seafood served outside of Red Lobster. I want to relax and escape from the cancer world, even if its just for four days please.

I can’t wait to come back to Ohio and see everyone and have my Wylie boy lay on my lap again. I can’t wait to be back home, in my own bed, lounging on my couch with a good book, sitting on my screened in patio, enjoying Ohio’s humid summers.

Like Dorothy said, there’s no place like home.

Thanks all for your support by reading this blog, praying for us, donating to my GoFundMe and spreading the word about it.