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)

 

 

 

 

 

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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.

“Silent Reflux”: the hanger on in my house

S5937618994_fa95be83fc_mhould I complain? Considering how much I’ve learned, perhaps not. But I shall, anyway.

I’ve learned that you can have something called “Silent Reflux,” or more medically, “LPR Reflux” which is “Larynogopharyngeal Reflux.”

Wouldn’t that be “LP Reflux”? Whatever, it was an eye-opener.

Some hints: you don’t necessarily have heartburn, you don’t react to food the way people with ‘normal’ reflux do, and you don’t know you have it. Ah, hence the term “silent.”  However, that same stomach acid that gives your friend symptoms after a spicy, large meal can send material up that irritates your esophagus and plays havoc with your voice box. Some people have a lump in the throat feeling; not me. Some people do have heartburn; not me. But I have had hoarseness for weeks, and, according to my friendly allergist, a post nasal drippy thing that I was so used to I didn’t notice it. And no, I have never smoked, a definite risk factor for both bronchitis and LPR.

I want to deal with this naturally when I get over the bronchitis (10 days and counting), but for now, I am taking that darn purple pill.  My thinking-outside-the-box allergist copied a “Sinus Lavage for Bacterial Biofilm” which looks and sounds gross, but is a true miracle worker.  Basically you stick some saline water with baby shampoo up your sinuses, hold in two positions, and blow a dishrag of mucus out that you really don’t know where it came from. I did some research on it and found that “Baby shampoo nasal irrigation has promise as an inexpensive, tolerable adjuvant to conventional medical therapies for symptomatic patients after [sinus surgery]. Its greatest benefit may be in improving symptoms of thickened nasal discharge and postnasal drainage.” Read for yourself – it’s in the American Journal of Rhinology. But why not break down that biofilm now so no surgery is needed? My physician thinks it helps with all things nasal, and now, I’m a believer.

Here’s the drill, and I promise, it’s worth it:

  1. Take 5 drops of Johnson & Johnson’s baby shampoo and mix with 8 oz of warm saline.
  2. Fill a syringe with 7 mL (1.5 teaspoons) of the mixture; instill into right nostril, holding both nostrils closed to prevent the fluid from draining out.
  3. Get into a head down position for 1 – 2 minutes (put your head over the bed or otherwise get it several feet lower than the rest of you).
  4. Then, keeping nostrils closed, lie on your right side for 1 – 2 minutes.
  5. Now get up and let ‘er rip.  Don’t be surprised.
  6. Repeat steps 1 – 5 for the left side.

This is helping rid me of both my LPR and bronchitis more quickly than before. I do it twice a day. With the rest of what I’m learning about how what I eat affects me, I think I’ll be back to better-than-ever health soon.

The fairies were so busy . . .

fairy group 2

The fairies were so busy

Just outside the young girl’s room.

They were making up their beds.

Why are they going to bed so soon?

fairy sleeping

“Sometimes young girl awakens

in the middle of the night.”

“We must go to bed this early

so we can help her do what’s right.”

singing

Mom and Dad sing nightly

Then young girl is hugged and kissed.

Great love, such love, surrounds her

Becoming a cozy, warm sweet mist.

blue fairy

“Oh, my!” the blue fairy exclaims

“This loving mist is sweet.”

She breathes it in, she waves her arms,

She feels her own heart beat.

pink fairy

Pink fairy knows, as fairies do,

That love from Mom and Dad

Just like this mist, surrounds young girl

Protects through good and bad.

yellow fairy 2

“It’s here,” said yellow fairy, “Now

I know just what to do.”

So she joined with all the fairies

and through the window flew!

fairy group 3

Radiantly they sparkled.

Quietly they moved.

Spreading mist through every corner

even tucking under grooves

in young girl’s sheets, under her bed

and all places in her room.

The love mist gently spread.

The fairies blessed it, and it bloomed.

IMG_4390

“Now she can sleep,” they said,

“For always, forever she knows

The love from Mom and Dad

Like this lovely mist, just grows.”

mist 2

“But now it’s time for sleeping

and for staying in this room.

Even if you awaken

You can feel the mist that’s bloomed.”

breathe

“Just breathe it in, and know

That, here in this room, is love

You can call it to yourself

Tuck it in from below, from above.”

PENTAX Image

Some nights, the fairies know,

That young girl needs to be assured

When she awakens, and all’s dark,

This bed is best, of leaving – she’s cured!

fairy sleeping

So they take to their beds early

They’ll be ready if she needs

To spread the love mist, tuck her in

Help her sleep here, succeed!

fairy group 2

The fairies were so busy

Just outside the young girl’s room.

They were making up their beds.

Why are they going to bed so soon?