Four Childhood Wonders of Recovery

Both my younger brother, Chuck, and I had awful childhood allergies and managed to catch any sinus infection or strep throat going around in the 1950’s in Atlanta, Georgia. So in 1961, when we were 5 and 7 years old, our parents made the decision, popular at the time, to have our tonsils and adenoids removed. This is the story of how our mother and father made that an unforgettable experience.

I don’t remember the drive to Egleston Hospital on Clifton Road, but I certainly remember the ride home. Chuck and I were both in pain, and rather than have us sit up on the short three mile ride home, they borrowed a neighbor’s station wagon so we could travel lying down. We’d never gone anywhere like that, and I remember we both thought that was pretty amazing. This was the first wonder of recovery: lying down in a huge, mustard yellow station wagon with “wooden” panels on our ride home from the hospital.

When we arrived, rather than put us in our own separate bedrooms, Mom and Dad pulled out the sleeper sofa in our small living room and laid us down together. We’d never been allowed to sleep on the sofa bed which was reserved for guests. Things in the living room were breakable, and we weren’t encouraged to spend any time there, period. This was a second wonder of recovery.

The third wonder was the Coke machine. It wasn’t a real machine, but rather a bright red and white plastic box with a red ball on the end of a lever. When pulled, a Coke bottle on the other side lifted. We had Coke shaped glasses perhaps four inches tall, and all the Coke we wanted. With no McDonald’s or other fast food restaurants, this device seemed truly magical. The only other place you could get a Coke poured like this was in drug stores or restaurants. I was on the right side of the bed, and so was the Coke machine . . . at least for a while.

I expect the first day of recovery went well since both Chuck and I felt so bad that we didn’t bother each other. Soon after, though, someone must have gotten loud about her brother’s requests, or him about hers, because the Coke machine was moved to the left side of the bed, his side. What can I say – I’m the older sister.

A fourth wonder of recovery began when Mom brought us ice cream and popsicles any time of day. Almost six decades later, I remember well how much my throat hurt. Those cold treats – usually reserved for after dinner or hot summer afternoons – slid down my burning throat, and I felt such relief. How very much it hurt to swallow! Both of us asked for them often as we healed, and, amazingly, we got them.

I don’t remember much after that, except the neighborhood kids coming in, more to look at the Coke machine than to cheer us up. We went back to our separate bedrooms and recovered from an operation now discouraged and which may even result in a higher risk of asthma and respiratory infections as adults. I can only imagine how mortified my parents would have been if they had known. What can I say – they did the best they could.

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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.