From patient to survivor

Survivor (noun): One who continues to live after illness, accident or war. 

 "So when do I go from patient to survivor," I asked my oncologist earlier this month. It's a question that has consumed me since surgery in July. 

Clockwise from top left: Flowers sent to my work from my hubby and boys;
certificate of completion from radiation; bathroom is full of creams and gels;
champagne and balloon from my good pal and neighbor.

"Oh, Wendy, you were a survivor the first day you walked in here," she said. 

Love her optimism. It's one of the reasons I chose her as my oncologist. And of course she's right. There was never any question of survival in my mind. But I wanted to know at what point I refer to myself as a survivor. 

"I'd say as soon as you're done with your radiation," she said. 

Today is that day. Chemo, surgery and radiation are now in my rear-view mirror. I'm far from done with breast cancer. My tumor fed on estrogen. So for the next five years, I'll take a pill daily to block the estrogen and hopefully prevent any recurrence. Reconstruction will be next summer. It takes about six months for the skin to totally heal from radiation. And then we will resume the expansion process to prepare for reconstruction surgery sometime next summer. 

The journey has already been 13 months and I have survived. April and Anne Marie, my radiology techs, told me they had a special song for me today. And as I began my series of deep-breath holds one last time, I heard Elton John sing, "I'm Still Standing." Made me smile. 

Cancer stays with you. The physical reminders are many--mastectomy scars, chemo hair, fragile veins and a burned and blistering armpit from radiation. I'm managing with my assortment of gels and creams and hope to see improvement by the end of this week. 

But even when the physical reminders have healed and reconstruction is complete, cancer will remain a part of my psyche. The challenge is to not let the worry keep me from living. Treatment necessarily requires you to press the pause button on many aspects in life. 

Today,  I'm pushing play.

You are where you need to be ... just breathe

Radiation treatment has begun and it's the final stage of my cancer treatment. I'm in week two of a six-week course of treatments that last all of five to eight minutes. By October 10th, I'll be done. The countdown to completion is on.

Unlike chemotherapy or surgery, radiation cannot be seen or felt. It's a big ole mystery to me. So I ask questions. Its effects are cumulative, I'm told. Eventually, it will lead to fatigue and skin changes such as sunburn and possible blistering and peeling of skin. Beautiful. Can't wait. Right now, I don't feel much of anything.

Two techs--April and Anne Marie--line me up under the linear accelerator (LINAC for short). Sounds scary, I know, but it looks a little like other scans, only larger. But there's no comfy cushion on the table. I'm on a sheet on the hard table with my head resting in a clear plastic mold. They slide a leg rest under my knees, which helps me to relax. (Side note: I need one of those for home.) I grab onto the handlebars above my head and let my elbows drop to the trays positioned on either side.

In preparation for treatment, the techs tattooed tiny freckles on my chest and sides to ease with the lineup. I lay heavy on the table while they use the sheet to position me perfectly. With the mother of all remotes, they move me up and under the LINAC. "Turn your head slightly to the right." I always forget that part because I'm fascinated with watching the red and green lights. The red creates a target on my chest. The green looks like some kind of measurement device striped down the middle of my chest.

A cross is cut into the ceiling tile above me with red LED lights glowing from within. I asked what it's for and it's simply a center point for alignment. All the lights are cool and distracting. I want to turn my head, but I have to remember to keep it angled.

Because my tumor was on my left breast, the radiation oncologist was concerned about my heart being in the way of the radiation beams. "How long can you hold your breath?" he asked me. "I don't know. Pretty long, I guess. 30 seconds, maybe. Should I practice?" I'm nothing if not a good student.

He explained that when I hold my breath, my heart moves up and to the right away from the radiation beams. So each of the six angles begins with instructions over the intercom to, "Breathe in ... breathe out ... breathe in ... and hold."

An electrical buzzing sounds though I cannot see or feel anything.  I fight my body's urge to twitch while holding my breath. I close my eyes and find my zen. "And breathe." Phheeeewwwww.

The LINAC moves around me with batwing-like trays coming in close, showing red laser lights across my body and then slowly, smoothly flying out again. Each time, it's a different angle targeting the beam on what's called the "tumor bed." The large round accelerator uses a series of "fine, tungsten leaves" to shape the beam to the precise shape of the tumor bed. I can see and hear these leaves being adjusted in the accelerator, almost like the aperture on an SLR camera.

With each position, I hold my breath longer ... 10 seconds, 17 seconds, 22 seconds. And then I'm done. And I'm one step closer to being a cancer survivor instead of a patient.

If You Were Born Today, September 8:

If You Were Born Today, September 8:

You are not only creative, you are able to channel your vision into practical avenues of expression. You are not well-suited to routine work. Your mind is always busy, and if you’re not using it productively, you are given to worrying and overanalyzing. Some worrying is good–you are strong at organizing. Too much, and you fret over the small stuff. Overall, however, you are hopeful and fresh and have an unusual spin on life that intrigues others. You are hard-working, inventive, and talented. Your ideas are gold–you can turn a brainchild into something lucrative. Famous people born today: Pink, Peter Sellers, Patsy Cline, David Arquette, Martin Freeman, Jonathan Taylor Thomas.

Happy Birthday also to Ruby Bridge, Matthew Dellavedova, Bernie Sanders, Sid Caesar, David Carr and the Virgin Mary.

A year of living with cancer

My husband tried to get me to open up. We had a long weekend ahead of us to wait to learn the "official" results of my biopsy. It seemed I was doomed to have all diagnostics on Fridays when the delay in getting results would be excruciating.

I kept telling myself, "You can deal with anything once you know what it is."

But over the Labor Day Weekend in 2015, no amount of self-talk was working on my psyche. I knew I had breast cancer. I didn't yet know what kind or what stage. I knew I was facing surgery, chemotherapy, radiation. Though I did not yet know in what order. Very few people in my life knew what was happening at this point.

When you're inside your head and afraid, you feel utterly alone.

My three sons were away for the weekend. We had no plans and in retrospect, we should have crammed our weekend full of fun stuff. "Let's take a drive," my husband said. We wound up at the Rocky River Marina, watching boats gliding up and down the river. As we sat on a picnic table, I confessed that I felt alone.

While I was at my lowest emotional point, no tears would come.

I just kept cycling through a series of questions. How would the boys handle my weakness? How would my husband? Could I work? What if I couldn't? How would we pay the bills? Will I feel sick? Will I look sick? Will I die? How will my family go on without me?

Speaking the fear always makes it seem less scary.

"You have to tell people," my husband said. "Give them a chance to care for you." Of course he was right. Virgos have a tough time depending on people or even sharing their innermost thoughts. We like to go along as if everything is fine and under control. But I knew I would need the support and love of others to carry me through. So I sent my first email on Labor Day evening 2015:

 I need to share some news. I've been diagnosed with breast cancer.

There. I typed the words. It would become easier the more I said it, but that first time on September 7 was difficult. Everyone asks the obvious:

Did you find it yourself or on mammogram? Found it myself and had been ignoring for long time. I'll write about that another time. 

What kind and what stage is it? I have estrogen positive, ductal carcinoma. My opinion on stage was that I didn't care to know. It would have no bearing on how I would face this. 

What's the prognosis? Really?!!! This is not a question you ask someone who was recently diagnosed with cancer. Because here's my response: I'm gonna fight with everything I've got and I'm going to recover. What other prognosis is there?

 After 3 p.m. on Tuesday after Labor Day I was in my car in a downtown parking garage leaving a meeting. I called the surgeon's office to get the biopsy results.

"Name?"

"Wendy Hoke."

"Birthdate?"

"9.8.67"

"Wow, that's..."

"Today, yeah."

"Happy Birthday. OK, doctor will give you a call back."

The mid-morning sun filters through the trees
to illuminate this statue I see on my daily walks.

As it turned out the results weren't ready until the next day. The lab was delayed because of the Monday holiday. But once I had the official results, I was relieved and then anxious to get started on treatment. I would have a series of scans--bone, heart, PET, CT--all to confirm it had not spread anywhere else and that my heart was healthy enough to get blasted with chemo.

"Wendy, you cannot hold your breath in the scan and hope it doesn't find cancer," my mom, a 17-year survivor of non-Hodgkins Lymphoma advised. "Go into the scanner, close your eyes, give it up to God and let the machines do their job."

So while I would not sleep the night before these tests, I did as my mom so wisely counseled. A good friend had given me bracelets, one with the Virgin Mary and the other a Shamrock. As my hands were clasped above my head, I would hold the charms and recite the Hail Mary. It helped to calm me down and I'm sure it kept my blood pressure normal.

On the morning of Wednesday, September 30th, I got a call from my oncologist saying the cancer had not spread and in a change of plans she wanted to get chemo started that day. I was at work, heading into a management meeting....literally standing in the hallway when I got the call. In retrospect, it was a good thing. I didn't have time to think or worry. I just said, OK.

"Before we begin, I need you to sign this consent to treat form," my oncologist said.

I read it over and the box was checked, "I consent to this treatment to cure my cancer." (bold is mine)
"Cure? We use that word?" I asked. She nodded. "It's an aggressive treatment plan, but yes."

"I'll gladly sign that and I'd like a copy for my records."

It's a year of your life and then it's over or so goes the traditional thinking. But my cancer was stage 3 and nothing about my treatment was traditional. I started with chemo and thought I'd have surgery after. Instead, I was put on Tamoxifen to help further shrink the tumor. I had mastectomy six weeks ago and tomorrow I head back to work AND begin radiation, my final stage of treatment.

We're at the year mark and the active treatment end is in sight. But I'll be on anti-estrogen medication for five years. And the process of reconstruction following mastectomy probably won't happen until next summer. But as my plastic surgeon said the day after surgery:

"Once you finish with radiation, you can start to reclaim your life."

I'm not waiting until after radiation. I reclaimed my life once I realized what was at stake a year ago. I notice things more acutely -- colors, smells, sounds. I smile easily, which is something I've always done. I give hugs freely. And I count every day as a blessing.

Why Lin-Manuel Miranda is my latest crush

The Pulitzer Prize-winning and Tony Award-winning Lin-Manuel Miranda makes me smile whenever I see anything he says or Tweets. That he is wicked talented goes without saying. What I absolutely adore in him is his epic joie de vivre and love for all of humanity. If you doubt what I'm saying, check out the wedding surprise he concocted for his wife. It's apparent that his talent for performance was a gift handed down from father to son.

His treatise on the stories we tell versus the stories we leave out at the University of Pennsylvania was one of the best of all commencement speeches in 2016. 

But it was this that I read in the New York Times By the Book feature back in May that really cemented him in my esteem. 

"I am most in awe of novelists, who move lights, scenery, and act out all of the parts in your mind for you. My kind of writing requires collaboration with others to truly ignite. But I think of Dickens, or Cervantes, or Marquez, or Morrison, and I can describe to you the worlds they paint and inhabit. To engender empathy and create a world using only words is the closest thing we have to magic."

Inspiration from poet Mark Nepo

Breaking Surface

Let no one keep you from your journey,
no rabbi or priest, no mother
who wants you to dig for treasures
she misplaced, no father
who won't let one life be enough,
no lover who measures their worth
by what you might give up,
no voice that tells you in the night
it can't be done.
Let nothing dissuade you
from seeing what you see
or feeling the winds that make you
want to dance alone
or go where no one
has yet to go.
You are the only explorer.
Your heart, the unreadable compass.
Your soul, the shore of a promise
too great to be ignored.

Time is a precious gift, no matter how you get it

The idea of a sabbatical has always been appealing to me--a paid leave to rest, travel, research, study. Education and religious orders understand the value, but the rest of our society is not so enlightened. Now in week 5 of my medical leave, I am grateful for the mental and technological break from a job that can easily consume.
In the weeks leading up to my leave, which granted is a result of having cancer and needing surgery not because I chose to use up all my PTO for my mental health, I prepped everyone for my need to be undisturbed by the daily stuff of work. And they have been incredibly awesome and respectful of that need. For that I am truly thankful. I'll be all the better for it when I return.

Here's what I've discovered in the intervening weeks.

1. WE have to set expectations and boundaries around our availability even in a 24/7 world.
2. Time to think is one of the most precious of gifts.
3. Nothing clears the head like a brisk walk.
4. People want to help. Let them.
5. It is possible to find time to read for pleasure.
6. The sun is a balm for many maladies.
7. Coffee in a pretty mug does tastes better than in a paper cup.
8. The smell of fresh basil in the garden makes my mouth water.
9. Flip flops > heels.
10. I wake up at 7:30 a.m. without an alarm.

So the trick for me is to remember these things when I no longer have the luxury of time. To remember what recharges my creative battery. Because perhaps the greatest realization is that I need to stay connected to my creative self. It's such an enormous part of my being, that I'm not fully myself if I don't create.

I would never go so far as to call cancer a gift, but what it has given me is perspective. So I've been playing around with ideas for essays, blog posts and, who knows, maybe even a book.

I just need to make sure--as the author Liz Gilbert says--that fear is not in the driver's seat of my creative bus.

Cancer, a Moonshot and Vice President Joe Biden

Happy Fourth of July, everyone! Catching my breath after a crazy week and busy weekend. I had the opportunity to participate in the Cleveland Cancer Moonshot Summit on Wednesday. Here's a link to the discussion. http://www.ideastream.org/cancermoonshot
As a follow-up to the Summit, Vice President Biden came to Cleveland on Thursday to offer his support for our efforts and to learn more about cancer screenings in under-served communities. I was invited both by his office and by the summit organizers at the Case Comprehensive Cancer Center. 

So I arrived at the Langston Hughes Family Health Center without really knowing what to expect. I was given a wristband and told I would be getting a photo with the Vice President. I was also told there was a seat with my name on it. Inside, I found my seat and checked with Secret Service to make sure it was OK to Tweet. (It was.) And then we waited. About an hour later, a young staffer got those of us getting our photos taken organized and lined up.

As they began organizing the line and double-checking names, pronunciations and titles, I started to wonder if maybe I wasn't on the list after all. Finally, after Dr. Stan Gerson (who was introducing the Veep) and Dr. Brian Bolwell, they told me I was last. And I was being introduced by someone from Biden's office.

So we waited some more and then I caught a glimpse of him coming into the room where photos were being taken. The line moved quickly and after Dr. Bolwell walked away, I looked at the Vice President and he knew who I was right away. I got a big hug (several, actually) and he asked how I was feeling.

I've interviewed a former President and done my share of high-profile interviews, but I'll be the first to admit that I completely geeked out meeting Joe Biden. Can't wait to see what the official photo looks like, hopefully my mouth isn't open too big. :)
 
After his remarks, he came along the rope line, where I was located and I got one more hug before he left for interviews. I talked to a lot of people afterward who asked if I knew the Vice President. I wouldn't say I know him, but I certainly felt that he knows well the struggle of all cancer patients.

The conversations that resulted from the Summit are encouraging. There's a lot of talk about technology, streamlining the underbrush of regulations and improving access to care for all. From what I saw here in Cleveland, we have the right people in the room.

I know there are naysayers, but what this effort means to me is hope. And for cancer patients, hope is everything.

On that note, my surgery is finally scheduled for July 27th.

The stranger in the mirror

I can't speak for the male cancer experience, but as a woman, when your hair begins to fall out in clumps due to chemo, there's nothing anyone can say that makes that OK. It's traumatic and you look in the mirror wondering who the sickly stranger is reflected back.

Like so many things with cancer treatment (for example, bone pain), it is something to be endured. So be gentle to those who are in the midst. They have lost something (albeit temporarily) that has been part of of their identity all of their lives. No matter what anyone says, it feels like a loss (of beauty, health, identity, etc.).

Big hugs to the cancer sisterhood. You will get through this.

Book Review: The Nightingale

From time to time, I'll post mini book reviews. As a warning, I'm rarely reading the latest thing.

However, I recently finished Kristin Hannah's 'The Nightingale."

The story of sisters Isabelle and Vianne and their harrowing survival during World War II occupied France hooked me from the beginning. Their stories move through the war in parallel and sometimes intersecting ways. The war and Nazi occupation intensifies and the stakes get higher and higher.

You feel yourself turning page after page to find out how it all ends. The war tested women's courage and forced them to make heart-wrenching decisions to survive and protect their loved ones.

They were underestimated by others and even by themselves. But time and again these sisters-and many others-pushed themselves to the brink in the hopes of just staying alive. Kristin Hannah's story is powerful and heroic, but written in a stark way that leaves little about the realities of war to the imagination. Hannah's story is a sweeping epic that serves as a testament to the many unsung heroes of the resistance.