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.

 

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.”

Webs, Light, and a Chalice

Who has the light? Or the Light?

It’s the season again, with blue and white and red and green. And above is my Unitarian Universalist chalice, burning at home, beside my bed. This light reminds me that I am a part of “the interdependent web of all existence.” That’s our UU seventh principle, paraphrased. The chalice flame helps me slow down and reflect, holding dear those in my congregation who are so special to me . . . who have given me the gift of Light during the dark days of my cancer treatment this past year.

Sometimes I find myself repeating those words, “the interdependent web of all existence” as I consider what it means to share life on this beautiful planet with other people, other nations, other forms of life, and even the fossils that show us life that has come before.

Be careful what you give a curious child of eight or nine.  I was given a box of rocks by a geology professor at Emory who was friends with my dad. Each was carefully labeled, stuffed with paper to keep them from scratching each other . . . where is that box now, 50+ years later? It’s in my fascination with the history of our amazing planet told through rocks. My degrees and professional life have had nothing to do with the flame of interest sparked by that box of rocks. But I am always learning.

It’s not yet Solstice, but the days are growing dark so quickly. My chalice light does not represent the lights of this winter season, yet it mingles with the neighbors’ lights.

Who has the light? Or the Light? May it grow in you and me.

Getting off chemotherapy? Happy about that?

Surprisingly, perhaps, I am scared to be, for the first time in 14 months, possibly going off chemotherapy tomorrow.  Scared? Possibly? Life as a cancer patient is never simple.

When I was diagnosed with Triple Negative Breast Cancer (TNBC) in October, 2017, my oncologist said, “Give us a year.”  Actually, I hope it will be more like 26 months.  That would mean I was placed in the medical arm of a clinical trial I am entering at the end of this year.  I have a 50/50 chance of getting the medicine or of being in the “watchful waiting” group. So that’s the funny thing about tomorrow – I’ll be off chemo for at least a month, but may be on again in mid-January.  I don’t know, and I won’t until the beginning of the year.

So – tomorrow may be my last day of chemo, and I am scared. As many with this disease have, I’ve experienced four different IV chemos given over five months, blood transfusions when my counts were too low, saline infusions because . . . who knows . . . a two-night hospital stay last December when my immune system crashed, loss of hair (you never know how much you like your eyelashes and eyebrows until they’re gone), and “hit the wall” fatigue when I wondered if I could reach the bed from the bathroom,

I’ve missed family, church and work events, couldn’t fly to Texas from Georgia to be with my brother when he died, and not been available in meaningful ways to too many people.

On the other hand, I have received the gift of caring and help from many amazing people, some completely unexpected.  Unlike some, I also have the most supportive husband in the universe.  Sorry, there’s simply no contest there.  And I’m blessed with a good insurance plan and the money to pay the deductibles until it fully kicks in.  I’ve had it easier than some.

But the thought of going off chemo after either being on it or only going off for a month to prepare for my double mastectomy, is frightening.  

The cord will be cut. I will go three months between scans and doctor’s visits.  I will be living life as a cancer survivor, all the while knowing that TNBC returns in 30% of cases.  It’s an aggressive, evil thing. And I will try to live each day fully, with the insights that this year+ of treatments has given me. Rest: both mind and body. Give over to the stillness of meditation daily. Hold your loved ones in your heart and wrap them with love and energy. Know that you are a survivor, and the mind affects the body in ways we have yet to understand. Acknowledge what I’m missing but be grateful for each day. And especially for those who love me, who care for me.

If I can face TNBC, I can face living without treatment, knowing I have done all that I can. Oh, except increase exercise as my strength returns. That really affects my mental, spiritual and physical self.  And cut down on calories. That, too. Really, my oncologist says that exercise and being at a good weight are about the only things I have left to “throw at it.” So I’ll do those.

For those of us who are survivors,

“May the longtime sun shine upon us,

all Love surround us.

And the pure Light within us

guide our ways on.”

With a little help from my friends: friendly free apps for meditation and breathing

Screenshot 2014-08-31 13.16.23 (2)Because your smartphone is so handy, why not add a few apps that will allow you to take some minutes just for yourself? Here are some to get you started if you find taking time away from the “now” for just yourself is sometimes difficult:

  1. Buddify 2:  Greets you with a color wheel, asks “what are you doing?” and offers slices of guided meditations for waking up, a work break, when you can’t sleep, plenty of other times. They last from 6 – 17 minutes, depending upon what you choose. I like the voices, but I also agree with critics that sometimes the words are too far apart . . . you get into a zone, then the monologue resumes. Still, this is an easy app to slip away with.
  2. Long Deep Breathing: You can set this in all kinds of ways to allow a simple, clear chime tell you to take a deep breath in, hold for a second or two, and allow a deep breath out. You decide how the inhalation, holding, and exhalation are. You decide how long to conduct the exercise. I find I’m breathing longer and better as I use this lovely app.
  3. SleepMachine: With this app, you can choose one sound to guide to you sleep or combine up to three.  I use crickets and beach sounds, each set to its own level, and I’m gone.