“My Voice” by Jody Schoger

Growing up in southwestern New York and Iowa left me with a deep connection to the world of living things.  My brothers, sister and I would spent hours outside – from building castles and forts in the woods to sliding into mud puddles when the rain fell just right.  Early on I loved the changing colors of the sky, of clouds, and the deep greens and textures deep in forests where the Iroquois once roamed.  In my imagination I tracked the same paths, striving for silence.

All these wondrous memories built up the spiritual reserves that were later essential for navigating dark times — including cancer.  Yes, and thank you God, I am very grateful to call myself a survivor.

My first brush with cancer as a co-survivor in the fall 1978 came unexpectedly.  It fell quickly and cut deeply.   The sky was startlingly blue, the last jewel of Indian summer.  That’s what I remember from the day my father went into a hospital near South Bend, Indiana.  First it seems the man who never even took aspirin is in the hospital with a stroke.  Within the day he’s in the hospital with a stroke that isn’t a stroke but a brain tumor from metastasized oat cell carcinoma, a highly lethal cancer. Three weeks later the father who never took an aspirin had died at 52.   He had a few days during that short time where steroids temporarily reduced the brain swelling.  There were vital conversations where he could think.  One was when the oncologist came to talk to all of us.  Treatment options were few and even hospice wasn’t part of the vocabulary.   I’ve never witnessed another cancer like that, and I hope to never again.

Our family seemed broken after my father’s death.  I felt swallowed up by sorrow so thick even moving seemed impossible.  But you do.  A number of years after Dad died, my mother joined my husband Steve and me in Texas for Christmas. I was working for a corporate hospital system directing the marketing efforts for the start-up of an acute care hospital.  It was easy to get Mom a doctor’s appointment when she said she wasn’t feeling well; to call again when she still wasn’t better.  My heart started to drag though, when the doctor ordered X-rays.  Then more tests.

Survivorship/Co-Survivorship Lesson Number One:   Live your life.

Bad news will arrive, whether or not you’re sitting by the phone.  Shit happens.  Hanging around the house on pins and needles waiting for a doctor to call will not change what you may or may not hear.  A mass.  Near her lung.  Talk to the new thoracic guy from UTMB.  Not a good picture.  Lining up hospital admission now.

Survivorship/Co-Survivorship Lesson Two:  Every day, do one small thing that is pleases you.  The stress of co-survivorship can wear you to shreds. Finally I adapted. Every day I’d search for one small thing to sooth my mind, even if was laughing at a plastic “Jack in the Box” head bobbing from a car antenna.

When my mother was diagnosed with cancer there was no internet.  I couldn’t “Google” “adenocarinoma” of the lung.  Instead I talked with her doctors as a journalist might, what, where, when, how.   I took notes.  The notes did not relate to the woman I called “Mom,” but were tidy little “to do” lists of people to call, meds to schedule, food to make, groceries.  I called MD Anderson’s 800 – number and talked with a wonderful woman there who was extremely kind if not brimming with optimism.  Eventually I did take my mother to MD Anderson for a second opinion.   They concluded that she would be just as well served receiving follow-up radiation therapy where we were. No one offered a prognosis past six months.

Survivorship/Co-Survivorship Lesson Three:  You will have to face issues you never imagined possible.  It doesn’t matter how old you are, if you’re caring for a parent in some ways you will feel too young.

Sometimes the tools we have to help someone we love so much feel small.  Toward the end of my Mother’s life, it was the offer of a wash cloth, a sip of Pepsi, an assurance that for this minute – for right now, I am right here by your side.   The closer you walk to death, the clearer this becomes.  During the last two weeks of her life I did not leave the hospital.  I didn’t stop her when she wanted to remove her oxygen mask, after being assured by her nurse that she would gently fall asleep.  And so she did.  Shared moments, a washcloth, and a sip of water.  I would not change a thing.

Survivorship/Co-Survivorship Lesson Four:  Live without regret.  Say and do to and for the people who count in your life.

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Fast forward.

I’m looking out on the Texas Medical Center from a parking garage.  It’s April 8, l998, the day before my husband’s 46th birthday.  I was 43.

Summer came early that year and the air was already thick with fumes and humidity.  But that morning I was shivering.  I held a big manila envelope with films and a radiology report an assistant had just finished typing.  From there I was due at a surgeon’s office.  Even with those facts and a sense of dread bigger than Alaska my thoughts kept drifting to the small, bright room in my brain where the word “benign” still resided.  God knows I was sprinting far, far away from the phrase “invasive carcinoma of the breast” I saw when I opened the envelope.  My reaction was visceral.  NO WAY animated each and every cell of my body.  It shot straight through me. The air went out of my lungs.

“Crap,” I finally said, aloud.  No one was around.  Just the sound of traffic starting again as the light below turned green.

Invasive breast carcinoma.   Invasive?   All I could think of was the Army, that’s invasive, I thought, as was a mound of fire ants.  Then in the next moment I crazily thought that carcinoma might actually be a cancer subspecies and not truly cancer. Maybe this “invasive breast carcinoma” business was just a dress rehearsal and not the real thing.

Survivorship/Co-Survivorship Lesson Five:  Any cancer diagnosis, no matter how you get the news, temporarily fucks up your thinking.  I don’t know how long I stood there, watching an unending stream of traffic stop and start up again.  Within the course of a minute – a sentence – I veered from wondering if I might die to being seduced all over again by the glowing words “benign” or even “positive.” Only in cancer are the negatives transposed.

With a cancer diagnosis the normal evaporates.  A spinning ball of fear moved in to take its place.  It plunked put down a hefty security deposit, then lodged in my stomach and part of my brain.  I didn’t understand this initially, but fear signed a short-term lease.  It went swimming through my dreams and was ready to spring into being at every opportunity.  I shook, I cried, my eyes popped wide open in the middle of the night.   Every time I swallowed back fear to ask a question, though, the spinning slowed an iota.

The time between diagnosis and developing a treatment plan is one of the worst, as a survivor or co-survivor.  Me and my “little carcinoma” (which I sang to the tune of “My Sharona”) went on tour   of four different clinics – at Baylor College of Medicine, the Stalen Clinic (where we walked out), Women’s Hospital, then finally at M.D. Anderson.  It seems obvious but I finally realized that I was in charge. I would completely take charge of every choice.  I could not change the fact I had cancer, and I certainly did have cancer, a Stage IIIB lobular cancer, but I could change how I wanted to treat this disease, and where.

Survivorship/Co-Survivorship Lesson Six:  Leave no stone unturned.  I learned everything possible about breast cancer, types, subtypes, treatment options, plastic surgery options.   Those alone were extensive.  Not everything was clear cut, as my tour date as “breast of the week” at MD Anderson proved.  This engagement involves a parade of doctors from all specialty areas, who can agree to disagree on what they your best course of treatment might be.  My mantra was to go and get that bastard cancer.

It came down to MD Anderson.  I loved everything about it: the variety of doctors, the large lobby where volunteers played an incredible selection on the baby grand, and the sense of cancer as the norm.  I was just another person with cancer, no more, no less.  My oncologist charted the plan, showing all the points where we would reassess, regroup and redirect, if necessary.   We would start with four treatments of FAC (the infamous “red devil”), then a lumpectomy, more chemotherapy followed by radiation.  By the end of April 1998, I’d completed my first round of chemotherapy.

Survivorship/Co-Survivorship Lesson Seven:  Something – possibly many things – will go wrong.

Fast forward – August 2003.

The instant Steve tried to speak after his surgery I knew something was very wrong.  Steve.  My Steve.  My husband of 28 years, the man I loved and admired.  As I followed the gurney down the hall I felt ill.  The month before he had been diagnosed with a malignant melanoma on his ear.  Now he was completely encased in bandages.  Over a six-hour period his surgeon first removed the melanoma followed by a plastic surgeon who removed, then rebuilt his ear.  It seemed like the operation took forever.  It was forever.  Being a co-survivor — even when you know the drills, you know how hospitals work, you know how to go and get what you need — is much harder than being a survivor.  You are much more helpless.  You know how much can go wrong.

When Steve opened his mouth his breath was cold and had the metal smell of anesthesia.  The problem was he had no voice.  He had a strained whisper that sounded like it hurt to speak.  It took another six months, of dead ends, starts and stops, tackling fear and the unknown, before it looked like he would have his voice back.   A retractor had exerted too much pressure on a critical nerve near the voice box.   The “how” actually was irrelevant since the consequence was more than enough to contend with.

Cancer will surprise you.  I don’t know any survivor who hasn’t had a side effect, some deviation from the expected path, from threatening infections to other surgical side effects, that truly brings home how brutal cancer treatment can be and is.  For all the talk about molecular therapies and protein expression the tools for cancer treatment are still fairly crude – cut, poison and burn.  No one is going to tell you, when you’re newly diagnosed – that something awful is going to happen, because something awful just HAS happened.

During my treatment a post-op infection following my mastectomy took me down fast.  In the course of a few hours.  By the time my neighbor got me to the emergency room my blood pressure was 60/40.   I had trouble breathing.  Who would have expected this?  No one.   It simply is how things turn out sometimes.

After the infection that made me so sick, my treatment went on to include another round of chemotherapy (Taxotere, for the second time, much easier) and six weeks of daily radiation.  Almost a year after my mastectomy I underwent reconstruction, another series of surgeries that took about six months.   I also took Tamoxifen (until the side effects became larger than the benefit, treatment for lymphadema, and two infusions of Zometa for my bones.   I’m sure that preemptive strike by my oncologist staved off any migration to my bones.  By the time I received physical therapy for my arm the second time I had started cycling seriously and had participated in an Avon 3-day, where we walked 20 miles a day for three days in a row.

Steve’ cancer would recur two years later in the same place.  His ear would be resected again, and he underwent radiation.  There isn’t a good chemical agent to use against melanoma, so he chose to employ the best available method.  We went to get that bastard, cancer.  He would be accepted for a clinical trial of potential melanoma vaccines, a series of very painful injections in his thigh and arm.  The scars from the vaccinations, big angry welts the size of quarters, are beginning to recede.  Both of us are still here.

It’s often impossible to describe our gratitude.

I’ll tell you something.  As often as something goes wrong, something goes very, very right.  That is grace.   Serendipity drops in like a beam of light through the clouds.

A friend suggests an ENT who might be able to help with Steve’s voice.  When we follow up, we find out that this physician has successfully treated individuals with voice problems – from those in the local choir to the stage of the Metropolitan Opera.  That’s serendipity.  Another friend wonders why I didn’t answer the phone one morning and stops by.  She gets me to the emergency room and within two hours I am in emergency surgery that more than likely saved my life.  That’s grace.  Not the surgery, but the sudden thought of a friend who decides to check in.  That is God.  These seemingly “small” incidents, visible now over the continuum of time and distance, were the threads of hope that helped us move through my cancer, and Steve’s.

Because our story would not be honest without telling you this:

Survivorship/Co-Survivorship Lesson Eight:  Love Surrounds You.

When I was diagnosed, one of the first breast cancer survivors I talked to told me that regardless of how anything turned out, one of the gifts of survivorship was love.   Friends fell from the sky with open arms of love.   They asked what they could do and I told them.  If I couldn’t think of anything they did something extraordinary, anyway.    People would to us, “you’re such an inspiration.  If that is true then we’re grateful for that.  My thought is that people are often heroic, it is simply that having cancer clears your vision.  You can truly see who they are.

Survivorship/Co-Survivorship Lesson Nine:  Treatment Aftermath Takes Time.

I remember a friend who had had a baby retell something her OB said:  it took you nine months to get in this shape, it’s going to take some time get back to how you were.  It is the same, plus some, with survivorship.  Your world has been rocked.  Your body is different, in my case, dramatically altered.  A number of things won’t ever work the same again.   My knowledge of life isn’t the same.  This is the time to reach out to other survivors, because they will understand.  Your family may be tired.  Let me be clear: your family IS tired. They want the “YOU” you were.  That person is gone.  That you is exhausted.  A better one is forming.  All true.  You may have to trust me here, but it is how it happened for me.

Survivorship/Co-Survivorship Lesson Ten:  Turn It All Around.

This last part can happen at any point.  You’ll suddenly realize you feel more like yourself than you ever imagined; a lot more.  Nine times out of ten you’ll find you are helping another survivor, someone whose path along the way you’ve already traveled.  Maybe there are some tips you can share.

The road narrows.  You’ll realize how much time matters — that it can and does slip away all too quickly.  Your choices become more creative; instead of things to sustain your life as it is I find I do things beyond where I am.  Every day I push the comfort level out a little bit farther.

As survivors and co-survivors we experience a deep awakening.  The knowledge that cancer can and does recur never completely goes away, at three, at five, then years following diagnosis.  Down the street is a woman who was ten years “out” when I was diagnosed.    Since then her cancer has returned, and through a series of events she now has a tracheotomy.  But this is how it is: when we see each other in passing, and share that particular wave and nod of recognition, my joy knows no bounds.

This entry was posted on Monday, January 4th, 2010 at 10:43 pm and is filed under written word and tagged with Breast Cancer, Co-Survivor, Jody Schoger, Survivor.