Faith Gives Us Courage: How I Reached Past My Trauma and Became an Advocate for Cancer Patients & Survivors

When I asked God what I should write about today, the message I received is that faith gives us courage. 

Faith that there is a greater purpose to our life’s events and a greater plan unfolding, sometimes invisibly, sometimes in the midst of incredible pain and heartbreak. 

This faith gives us the courage to reach out beyond ourselves and do what is called for. 

I am experiencing this in my life right now. 

A handful of months ago it occurred me that the institution that ran a medical research study I participated in as part of my cancer treatment was no longer collecting data on its subjects.

At least, they were no longer collecting data on me. 

As the first person treated with all protons at The UF Proton Therapy Institute, I can surmise that they are not collecting data on the long-term survivors who received experimental radiation at their facility. 

The study I took part in began in 2009 and was published in 2014. It is a medical research paper, available online.

I noticed that much of this institute’s marketing lies in the claim of causing less damage and potentially, less late-effects than traditional radiation. 

I searched the internet for long-term studies on the effects of Proton Therapy. 

I found none. 

What I found are studies suggesting mixed results. Some studies even suggest that Proton therapy may be more harmful than traditional radiation. A number of research papers point out that the “state of the art” of Proton Therapy is stagnant. 

They don’t have enough patients receiving the treatment to do the kinds of trials they need to do for more robust research so the techniques can be improved. A big hurdle is getting insurance to cover it, so more patients can be treated. 

As of now, less than 1% of radiation patients receive Proton Therapy. 

Well, I received my treatment for free and I am practically a walking science experiment. 

Why wouldn’t they be keeping data on patients like me— Patients who were treated as young adults who go on to live, God willing, decades past treatment? 

That is the question I have been pursuing for weeks now. 

In doing so, I have started sharing my story. 

I have started talking about my experience with cancer and cancer treatment. I have sent out numerous e-mails. 

I have a Zoom appointment set up with the Medical Director of University of Florida Proton Institute next Tuesday. 

I signed up to attend the first-ever Hodgkins International (a group founded by Hodgkin’s Lymphoma survivors) conference in June. 

I had a Zoom meeting with the Executive Director and co-founder of Hodgkin’s International on Monday, and she invited me to be a survivor panelist at the conference. I enthusiastically agreed.

I have become an advocate for survivors. 

For years, I avoided thinking about the fact I had cancer, chemo, and radiation. 

My experience with cancer had traumatized me. 

I put as much distance between myself and Hodgkin’s Lymphoma as possible. 

But I’m 39 now. I’m sober. My vision is clear. I’m a mom. 

I realize I have to reach beyond my fear. I have to go where the pain is and let God transform it into something Good. 

Instead of reading these medical papers and getting freaked out about what could happen to me, I have to ask, “How can my experience help improve the lives of future cancer patients?” 

Instead of agonizing over whether I made the right decisions regarding treatment back in 2009, I have to do what I can to help people have access to information to help them make decisions now and in the future. 

I have to push for data to be collected on long-term survivors like me. 

Maybe I even have to push for insurance companies to cover Proton Therapy for more patients, so there can be more studies and the technology can be improved. I don’t know yet.

If there is a mission calling you, but fear is holding you back, keep this in mind: “Faith gives one courage.” 

God’s purposes and the reasons things unfold as they do here on Earth are beyond our understanding, but His guidance and grace empowers those who are open to receive it. 

May that mercy and grace be with you today.