Linda’s Journey, Part Four: The long road ahead [GRAPHIC CONTENT]

21 Photos

Since nose reconstruction began, Linda Hershey has had chronic pains and disorders. Almost four years after her nose was removed, cancer was found in her frontal sinus. In a journey marked by hope and despair, she doesn’t expect to live a “problem-free life” and knows that issues may arise indefinitely.

Story and photos by Algerina Perna. Warning: Series contains graphic content.

Nearly two years after Linda Hershey’s cancerous nose was removed, her right eye began swelling and she started seeing double. The eye became so severely protruded over a few months’ time that she needed a prism on her glasses to see properly.

By late January 2010, Hershey was forced to face her worst fear: the return of cancer.

Doctors at Johns Hopkins Hospital conducted tests to rule out the return of squamous cell cancer, caused by abnormal cells that reproduce in the flat cells of the skin. They also ruled out the inflammation of Graves’ disease, a condition she has had since her teenage years.

Fortunately, it was just a sinus infection, though it required surgery.

The cancer scare was the latest hardship for Hershey amid an arduous series of nasal reconstruction surgeries prolonged by complications. Pieces of her forearm, ribs, ears, forehead and skull were used to craft a new nose in the pear-shaped cavity left from the removal of her nose.

Still, Hershey’s nose flattened as some of the rib cartilage and skull bone grafts continued to dissolve.

On Sept. 28, 2010, Dr. Patrick J. Byrne, director of Hopkins’ division of facial plastic and reconstructive surgery, operated to reshape Hershey’s nose and make it look more natural.

He placed rib cartilage from a cadaver at the tip of her nose, along with some of Hershey’s own rib and ear cartilage. He also repositioned her cheek and eyelid, and placed implants into her eye orbit to help lift the eye and move it back to a normal position.

Hershey’s initial rib graft surgery in June 2008 — which required long pieces of cartilage to build the nose framework — had not lasted because the cartilage was calcified and dissolved. Part of a later bone graft from her skull had also failed to hold up.

But this surgery required smaller pieces of Hershey’s cartilage — pieces that had been stored in a pocket under her skin after the June 2008 surgery.

For a time after the rib donor surgery, Hershey was dejected and weary of the difficult recovery, which brought nosebleeds, a swollen eye, occasional stabbing pain, and numbness. She also had to resume putting a “trumpet” in her right nostril, a firm plastic tube with a hole in the center to allow for air passage. Scar contracture — the shrinkage of tissue — can continue for a year after surgery, so the trumpet kept the nose from collapsing.

Hershey wondered whether the limit had been reached on the number of surgeries her nose could withstand. “It seems I breathed better back several procedures ago,” she said.

Dr. Byrne, meanwhile, had worried at several points along the way, such as when blood clots traveled to Hershey’s lungs after a 10-hour surgery. He had felt responsible when her rib cartilage failed as a nose support, necessitating the skull bone graft. Byrne said later, “It was incredibly disappointing because I just felt, ‘Man, I’m gonna fail her. I’m not going to help her. And she put her trust in me.’”

Just when things seemed to be stabilizing, new complications arose a year after the September 2010 rib donor surgery. Cancer was found in Hershey’s frontal sinus, located above the eyes. Shortly thereafter, she suffered a stroke in her brain stem, which regulates breathing, motor control and other vital functions — but it caused no permanent damage.

There are patients who really teach me the limits of my own personal abilities and by proxy, the limits of what modern surgery can accomplish”

Throughout 2012 and 2013, she continued to have problems with cancer in her frontal sinus, and surgeries to remove it. Byrne fixed a cave-in at the bridge of her nose, and this spring, she had surgery to correct a tear duct problem. Recently, she had another surgery to raise the lower lid and diminish draining from her right eye. The sinus and eye surgeries were performed by other Hopkins doctors.

Commenting on Hershey’s appearance a few months after the surgery to fix the cave-in, Byrne said he was reasonably satisfied. “In a case like this, it simply depends on: Is her facial appearance acceptable to her, or not. If she concludes that it is, then we’re done. … Unfortunately for her … there’s really only so much that can be done.”

He added, “Hopefully, as the field of facial transplantation and tissue engineering evolve, we’ll be able to achieve wondrous results for the Lindas of the world as well as we are with the younger patients who have better tissue to work with.”

Hershey’s case, Byrne says, has taught him a lesson in humility.

“We have so many great, great successes and aesthetic outcomes, and then there are patients who really teach me the limits of my own personal abilities and by proxy, the limits of what modern surgery can accomplish. … And that lesson in humility … inspires us to try to push forward.”

September marked the six-year anniversary of Hershey’s first cancer diagnosis. Her journey thus far has been punctuated by hope and despair; acceptance and frustration.

Hershey has a new nose created from her own body parts, titanium screws and cadaver cartilage. And she hasn’t smoked for six years. She remains “grateful for all that has been done for me at Hopkins.”

But since nose reconstruction began, she has had chronic vision and sinus issues, almost daily headaches, and more recently, chronic ear infections. Her nose still doesn’t look normal

Most days, she retains her wry sense of humor. But in her darkest moments, Hershey’s despair overcomes her like a “tidal wave.” With a catch in her throat, she says, “If I had known I’d have to go through all this, I would have wanted God to take me.”

Not wanting to dwell in sadness or let those moments define her, she adds, “You know what brings me back? People who have greater losses than myself. People who have lost their faces … men in war who have lost all four of their limbs — far more than I have lost. … I have to re-evaluate where I am and appreciate what I have.”

Although she does not expect to regain her sense of smell, Hershey hopes to eventually breathe better through her nose.

Daughter Tami Layman speaks with admiration about Hershey’s response to adversity: “She has handled it with so much grace.” Layman has come to appreciate what she describes as her mother’s headstrong ways: “I see her as a strong person, and if God hadn’t given her those characteristics, she wouldn’t be here today.”

And whether or not treatment takes months or years longer, Hershey accepts her fate. She doesn’t expect to live a “problem-free life,” and realizes that medical issues may arise indefinitely.

“If this is the end result, and this is what I have to live with, so be it. … I look different, but I’m still me.”

To read Linda’s Journey, Part One: Confronting cancer, click here

To read Linda’s Journey, Part Two: A doctor’s challenge, click here

To read Linda’s Journey, Part Three: Battling the emotional scars, click here

Timeline of Linda’s journey