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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Apologies to John Denver: Flying Post-Chemo

All my bags are packed, I’m ready to go.
I’m waitin’ here inside my door.
I hate to have to wake at 5:00 AM.

 

No, the dawn’s not breakin’, it’s not early morn,
Our Lyft is waitin’, not blowing her horn.
Already I’m so tired that I could cry.

 

I’m flying, with lymphoma:
My sleeves, glove and leggings on.
Applaud me ’cause I’m so prepared and all.

 

‘Cause I’m leavin’ on a jet plane
I’m so glad I’ve done my chemo plan,
Oh, babe, I’m ready to go!

 

There’re so many times I’ve felt quite down,
So many times, I’m so run down.
I tell you now: I’m one stronger thing!

 

Every place I go, I’ll forget you (chemo)
Every song I sing, I’ll sing for me,
When I come back, I’ll have great memories.

 

So look with me at the view.
Snorkel with me below the blue.
Know that there’s so much here to enjoy!

 

‘Cause I’m leavin’ on a Delta plane,
Going to St. John again,
Oh, babe, I’m glad to go.

 

(above sign found while wandering the backroads near Coral Bay)

 

 

 

 

 

My first CD

Ever since I was diagnosed with breast cancer (Oct, 2017), I have had an almost visceral reaction to hearing about, reading about, or being told about a Cancer Death. Like many survivors, I have been told stories by some people who seem to need to share their (name the relationship)’s valiant fight and peaceful death from cancer.  Or stories about their relative’s amazing recovery. Neither was helpful. These ideas are.

I am me, the only me with Stage III Triple Negative Breast Cancer, the only me who today learned that her dear friend and church cancer support group member, Terry, passed away last night, the only me who signed on many dotted lines for a clinical trial that may “prolong” . . . the nurse didn’t finish the sentence. I learned of Terry’s death on the way to my signing, and I compartmentalized well until the drive home. My husband was driving.

On my last visit, Terry and I spoke about her memorial service. She was drifting in her pain medications, but her eyes lit up every time a friend walked in. I softly sang and hummed some of our favorite Unitarian Universalist hymns, including one she’s beginning her service with, “Blue Boat Home.

I could write a eulogy for Terry here, but I swear I hear her voice saying, “Go on! Enjoy!” She was a tiny, lively woman who leaves a hole in our congregation, Unitarian Universalist Metro Atlanta North (UUMAN) and in my heart.

All of us with days, months, and only a few years as survivors have to face the fear of remission in our own ways.  Cancer is a horrible, evil disease.  Terry was a beautiful, lively person. She’s my first close friend Cancer Death, and her inner beauty and dignity have me less fearful of what, should I be granted long life, will probably be many other CDs.

Another song for her service will be, “I hope you dance.”