Survivor guilt in a clinical trial . . .

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As our car reached GA 400, the tears began from nowhere.  I had on the button-up shirt that allows easy access to my port, a shirt I haven’t worn in many months, not since my last IV chemo in March, 2018. We were headed to “Little Northside,” Northside in Cumming where my oncologist’s clinical trial staff work. Headed out for another set of infusions.  With clothes I hadn’t worn since chemo IV infusions at Northside Pill Hill.

If this were my first set of infusions, I would not have known enough to cry. Being diagnosed with Triple Negative Breast Cancer at 63 years old lays out a future perhaps better allowed to unfold, chemo by chemo, for an older body. All the chemos were tough on me: the ones that were guaranteed to be difficult (would you like carboplatin in your body?) but also those that were supposed to be easier.  I’m looking at you, Xeloda.  You’re a deceptive handful of pills. And you do have side effects. My name might as well have been “less common” for all the kinds of side effects I experienced during the months I was on you.

But here I am, in a haze of happy tears, as we head to the hospital. I have a blanket a church friend made for me. I probably won’t need it, but I’m taking it in her memory. I think about those who’ve gone before me in clinical trials.  I think of how quickly my friend passed away.

I’m getting immunotherapy not yet approved for TNBC at my stage. Having been randomized into the medicine arm, I only seemed to allow myself to fully recognize my good fortune once we were on the road.  You have a 50/50 chance of not getting the medicine when you sign up for a clinical trial.  In this one, there would have been no placebo, I’d just have begun my every three months appointments and watchful waiting. But I’m getting the medicine, and I am just now allowing myself to recognize how lucky I am.

My diagnosis was an aggressive one, as pretty much any TNBC is. Nobody knows whether getting the drug in this trial will save my life or not. Without it, I have a 70/30% chance of staying in remission. Other breast cancers are often more like 90/10%. I will be getting an infusion once every three weeks for 27 weeks. Will my odds then be better? We think so, though no one knows for sure.

This means I will be under the care of my oncologist for almost two full years. Friends express frustration, “Aren’t you finished yet?” No, I’m not.  I have to throw everything available at this, and then I’ll  survive and plan trips for the next 20+ years.

Half the women in this trial will not get the medicine.  All of us have TNBC and none of us experienced our tumors disappearing, despite four strong pre-surgery IV chemos. We long term TNBC folks have an even harder time gauging when we can call ourselves survivors: after surgery? radiation? Xeloda? our last treatment?  Getting the medicine makes me feel like a survivor, and knowing that others are not gives me guilt. But I have this sense of affecting a world of women: whether this drug will prevent metastases will be determined in the next few years by thousands of women like me: those of us who are getting it and those in the control group.

Is it arrogant or hubristic to feel that you are helping those who come after you by being in this trial?  It’s been a truly difficult 15 months, and I admit waves of emotion swept through me today – just being in an infusion center again with its sounds and alarms and sleepers is challenging.  I’ve heard it said that being a cancer survivor can give one PTSD. I don’t really know.

I just know that it’s OK to cry, to be a survivor, and to hope I’m helping others in the future.



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