Tears in my ears

It’s 4:30am. It’s about 27 hours before we’re scheduled to head to the Jimmy Everest Center for Childhood Cancer at Oklahoma Children’s hospital. 2 hours before my shift in the camp kitchen begins.

I am laying in a bed at camp. If you’ve been to camp you may know that means I’m exhausted and the bed feels like sleeping on a plank of plywood. Last night was the 4th night here and I’ve spent the last 3 days working in the kitchen. So I am tired. Not just tired; sore and exhausted. Everything is harder when we’re tired, so that may affect how I’m feeling. 

So, here I lay feeling tear drops roll down my face and land in my ears. I hear my shallow breaths and feel myself shaking. I’m aware of the other 3 exhausted ladies who I’m sharing this room with so I’m trying to be quiet. Not super easy when my emotions have gone wacky and my body is trying to wail. 

Since I’m awake I just read an update about a friend, “Mighty Miller” who has battled a relapse of leukemia for the last year. Though he lives in our town and was treated at the same hospital as us, he and part of his family have lived in Memphis for the last year, working to get more time together through new treatments at St. Jude Children’s Research Hospital. 

Yep, research is in the name of that hospital that we’ve all heard of, the one we see commercials for and think treats all the kids with cancer for free. Well, not all the kids, and paying life and basically moving to a new town is never free. So many types of cancer have no current trials. Those have treatment protocols developed well before I (who will be 50 next year!) was born. No, I don’t want to have to think about what it takes to be willing to be part of a medical trial. I especially don’t want to think about what it means for one of our children to do that. But, when we talk about needing better treatments that is part of the conversation. Our treatment of so many diseases has come so far in my lifetime, yet there is so much more to be done. 

All right, back to me and my experience this morning. I’ve shared before that our trauma resurfaces at unexpected times and in unexpected ways. One of those this week has been brought on courtesy of some corban. That’s the stretchy adhesive tape stuff they use to cover the cottonn ball covering the hole you get when you have blood drawn or an IV put in. I didn’t know the name for it 3 1/2 years ago. Now I have a box of different colors of it in my house.  

See, our kiddo fell running around playing a game and got several cuts/scrapes/gooey bleeding places. The bandaids covering them kept coming off (the heat index is over 100 so we’re super sweaty). To keep the wounds covered, our camp nurse used some corban. 

It was fine at first, then our girlie’s body started reacting. The only times times she’s had that stuff on had been related to figuring out she had cancer, and then going through the horrible treatment and the testing that continues to follow that diagnosis. I don’t have the words to explain how hard all this is, but I do have tears falling into my ears this morning. 

When I think about “improving treatment” one of the things that should be relatively cheap, not super difficult, and totally possible to do is to address the mental health side of things. As a college student, when I traveled overseas the organization sending me talked to us about reverse culture shock. They knew that at about week 3 we would be tired, homesick, and longing for familiar food. So they prepared us for that and helped us think about how to deal with it. If they could figure that out 20 + years ago, how can those who are helping families go through this trauma not do a better job of addressing this? Simply saying “those that went before you experienced some of these thing and emotions at these points, here are some ways to handle it” would be an amazing first step. That has been completely absent from our experience and would be very helpful and should be totally possible. 

There are many parts of this journey that will be very hard to change and/or improve and not much can be done about at the moment. But figuring out how to improve the mental health support for those going through it is not the same as curing the cancer. It’s something we’ve done in other realms and should be possible.

Well I suppose it’s not surprising that this post has gotten very long. That happens for me 🙂 There are still tears I can’t stop right now. I’m sitting up so now they’re running down to my chin or dropping onto the collar of my shirt. And there are so many things that I don’t even know to ask or to address to make this better for me, my husband and my kiddo. Yet it’s time to get to the kitchen and get breakfast started for these campers. 

So, no, I’m not ok this morning, and nope, there’s nothing I can think of that will quickly fix that. Sometimes we just have to keep going, just keep on keeping on. Hopefully my tears will stop before I’m mixing up the scrambled eggs (they’re definitely not part of the recipe) 

May the day of the other 120ish people here at Camp be off to a much better start than my day. May me getting these words out give me a bit of peace. And, above all, may my kiddo and all the others that have gone through this have healing, peace, and joyful futures free of complications and horrible side effects from the  treatment. 

Oh, and may tomorrow’s “poke” to get the IV go well and the scans be clear!