cincy days.

It’s Wednesday, and that means another visit to Cincinnati Children’s Hospital.

Wednesdays have become my Cincinnati days so quickly, too quickly. It seems so natural by now, like it has been a part of my schedule for years, and yet this is only my 4th Wednesday trip down there.

I still can’t believe it. I still can’t believe I got into the clinical trial in Cincinnati, and that I’ve been taking those chemotherapy experimental pills. It doesn’t even feel like chemotherapy, really. It’s only until I realize I have to put on the gloves before I even open the bottles and look at their packaging declaring and blaring “CYTOTOXIC,” toxic to living cells, that I remember these white capsules are 8 white capsules of hope and poison all in one.

And I remember the first day that I took them, and after my evening dose, sitting there in the Cincinnati hospital room, I felt like I had swallowed peace whole that was quietly settling within my soul instead of chemo-poison. I listened to the nothingness of the hospital room (which was surprising to me), and I swear I felt the presence of God as if he was my father putting a consoling and steadying hand on my shoulder.

If only I could bottle that up and take it, like a pill, whenever I needed that peace. He still is my peace even when I do not always see it.

I am so amazed at how pretty normal I feel since taking the new drugs. I mean, I expected to be knocked out for days, to pass out like I did last time I started chemotherapy again, to feel so hallowed out that I could simply float and hover over my bed mattress. These drugs are nothing like that, so far. At times I am dizzied, feeling like a Southern belle who might just swoon over anything, because there is no none reason as to why I do. And at times I am lightheaded so much that my brain can’t even compute what my eyes are seeing. I swear I’ve gotten clumsier; I run into things that aren’t even in the pathway of my steps. And yes, I still get tired at times and need those moments of rest. I am still always learning that.

So today is Wednesday, and my new normal is to go to Cincinnati for a check up. Yes, this does oddly seem routine now. Nap in the car, wait a while at the office, get my height and weight checked, bloodwork, talk to Dr. Alex, talk to Dr. P, be sent off, lunch, more car napping. Routine.

And yet, today Dr. P shakes the potential routine course that has been set.

He reminds me of the scans that I have next Wednesday, which will be the first scans that I will have had since starting this new trial. He now tells me that these scans will help determine if I can continue to be a part of the study. If the lung nodules they’ve been tracking have grown by 20%, then it means the medication is not working and therefore I must stop the trial. If they are stable or are shrinking, then I get to stay on the trial.

This is new news to me. I mean, it logically makes sense…like why would I want to be on something if its not working. But at the same time, how can you just know in a month like that, after just one cycle of 8 pills for 6 days? And I guess I kind of felt like I had more of the say here in this clinical relationship, as I wanted to take time and evaluate how I thought the trial was going around March. And yet, this medicine and trial has seemed to supercede my own desires. Once again, I am in the clinical trial world where things are so different, the language is different, the doctors even seem to speak differently.

So what all can I do? Simply wait and pray, wait and pray, when all my mind really wants to do is go into anxiety trials of what-ifs and but-then-what-next thoughts.

Bring me back to that first evening Lord of rest and peace in that hospital space.
Remind me of the ways you have brought me here and directed my steps.
Let us know quickly, quickly what are the next things at hand.



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