Teenage Mutated Ninja Valerie

Things have been so up and down, that I don’t even know where to start.

Just last week we went from getting perfectly clear results from my PET scan on Tuesday morning to getting Strata test results back on Thursday, finding out there’s a mutation, not knowing what in the world that means, and only knowing a little about what that means now.

The Strata trial is a clinical research trial that takes your tumor tissue and runs genome sequencing on it. In regular people terms, it tests your DNA to see if there are any modifications/mutations that could give the doctors insight about your cancer and how to treat it going forward.

In my case, Glanda came back with what’s called an ATM mutation which affects DNA repair. No one really knows exactly what that means yet, but there are definitely a few new things to consider that might give us some answers:

1. Is the mutation present in my regular tissue DNA or is it just in the tumor tissue?
2. If it is in my regular tissue, is it present in both expressions or just one?
3. Patients with ATM mutations, if the mutation is consistent in your regular tissue cells and is expressed in both alleles, can have a hypersensitivity to radiation due to the lack of ability to repair DNA when it is destroyed. Radiation destroys DNA so do we proceed with radiation? Or do we scrap that plan and try something else?

My current scheduled start date for radiation is next Monday 9/11, but I also have an appointment with a genetic counselor on Thursday 9/7 to test my regular tissue and figure out what’s going on in those cells.

So we don’t know whats going to happen in the following weeks. I have a mouth piece, a mask, and a nice sticker on my chest so I’m ready for radiation if that’s what they decide, and on the other hand if they decide that the ATM mutation will create too much of an adverse effect in my body if i’m irradiated then we will explore other options.

Hopefully that makes it easier to see why I said I have no idea what’s going on. But what I do know is that personalized medicine is really cool and it’s somehow given me a sense of security and protection from the Lord. I think about how if they hadn’t done Strata testing, I could have potentially just gotten standard radiation therapy and had horrendous side effects from it not knowing my DNA had a mutation. Absolute misery could have ensued and done more harm than good.

It’s neat to think about but it also makes the journey longer and more drawn out at the same time. Nothing has changed here in my condition. I’m still healthy, happy, capable, and running around acting ridiculous like normal. All this is just peeling back more and more layers of information and working to discover the best plan to make sure I remain happy, healthy, and ridiculous.

None of this means that it’s going to get any easier and I’m sure there will be even more ups and downs to follow, but we don’t have a single doubt that the Lord is guiding our steps and leading us along the path He always knew we would travel. And I get that some people might think that makes God a terrible Father for knowing we would face this and still letting it happen, but I’m growing as a woman, as a wife, as an employee in the medical field, and also as daughter of the King through this…and that’s worth more than anything to me. He is still a good, good Father.

Another day of hallelujahs. Onward and upward.