Bright Flowers On Black Backgrounds

Revolutions in lung cancer treatment give Stage IV patients hope for a future

-By Christina McDaniel

(Written September 2015 for Feature Writing Oakland University)

Painting Birch Trees

When doctors told Heing Taing she had stage IV lung cancer, she started painting again.

It had been an activity she loved as a child and teenager, but she stopped when she began studying to become an optometrist.

“I would forget to eat or sleep while painting if my husband didn’t remind me!” Heing said.

One of her paintings captures rainbow-colored flowers on canvas—all shades of pink, red, blue and purple—leaping out from their ominous backdrop.

The painting contains the perfect balance between light and dark, hurt and hope. Even the dark background has dashes of yellow in it.

Heing also loves painting birch trees, a type of tree known for its ephemeral beauty and fragility often leading to a life expectancy of less than 20 years, according to The USDA Forest Service.

Heing said she struggled with shoulder pain for over a year. “Respiratory infections” and agony every time she breathed soon followed.

The doctors ordered an MRI for Heing’s shoulder. On the screen, the lung tumor glared back at them.

At 37 years old, she received the diagnosis on a wintry day in 2013.

Stage IV Lung Cancer.

“Stage IV cancer meant I was going to die young,” Heing said. “…that I wasn’t going to grow old with my husband, see the rest of the world…or start a family.”

Heing said she quit her job immediately after diagnosis.

Statistically, Heing had good reason to fear for her future.

Lung cancer ends the lives of more people than “breast, colon, and prostate cancers combined,” according to The American Cancer Society.

The American Cancer Society lists the five year survival rate for stage IV lung cancer as one percent.

Dr. Ishmael Jaiyesimi, an oncologist at Beaumont Royal Oak, said stage IV, in lung cancer, means the tumor has spread outside the lung it originated in.

This classification can mean anything ranging from the cancer resides in both lungs, to, it has blasted through almost every organ in the body,  Jaiyesimi explains.

20 years ago, half of the patients with lung cancer passed away within two to four months of diagnosis,  according to The Journal of the American Board of Family Medicine.

In contrast, the 2015 article says many patients may now be alive 24-30 months  after their diagnosis, thanks to new drugs like Tarceva, Xalkori, and Iressa.

Tarceva received its FDA approval for late stage lung cancer in  2013; Iressa in 2003; and Xalkori in 2011, according to the Food and Drug Administration. (FDA)

Tarceva, Xalkori and Iressa, all taken by mouth, are referred to as “targeted therapies.”

These drugs are crafted to shut down a particular mutation in the lung cancer patient’s tumor, according to Jaiyesimi.

There are many types of mutations, he said. Some lung cancer patients don’t have any known mutations at all.

“They have to express that (mutation) before we can put them on those medications,” Jaiyesimi said.

Heing tested positive for the EGFR mutation exon 19 deletion, according to her blog, “Hanging onto Hope.”

Her oncologist started her on Iressa, Heing’s blog says, a little salmon colored pill usually swallowed once a day.

These drugs allow late stage lung cancer patients to ‘paint yellow’ on an otherwise grim prognosis and to believe they might be around five years or so from now.

Jaiyesimi said targeted therapies can stave off new cancer growth for two to three years.

One of his lung cancer patients has been surviving on a targeted therapy for five years.

These medicines don’t work forever, Jaiyesimi said.

The cancer eventually grows stronger and spreads despite the medication, Jaiyesimi said, leaving the lung cancer patient with few paths to turn down for further treatment.

The concept of chronic cancer treatment is similar to watering your plants, Jaiyesimi explained. A gardener cannot water the ficus tree once and expect the roots to remain saturated with the life saving fluid.

A lung cancer patient must continue to consume her medication for as long as she wishes to keep her cancer at bay,  Jaiyesimi said, to keep the drug present in their blood.

“Cancer ought to be thought of as a chronic disease…like diabetes or multiple sclerosis,” Heing said.

Michelle Gonzalez, 31, takes four capsules in the evening and four in the morning to restrain her stage IV lung cancer.

In her Facebook profile picture; Michelle sits in the embrace of the man who has wrapped his arms around her for the entire duration of her illness, she said. She has an energetic smile, high cheek bones, and a mane of shoulder length, black hair.

Michelle, born in Philippines but raised in Hawaii, adores hiking and the beach, worlds she could not experience with her cancer at its worst, she said.

“I couldn’t be outside too much. I couldn’t breathe, really….I couldn’t walk more than five feet without having to stop and rest,” Michelle said.

She carried an oxygen tank around with her, the cannula hooked into her nose.

Like Heing, Michelle said her stage IV lung cancer started with excruciating “sharp” pain in her shoulders so intense she had to take hot showers to sleep.

She had been a waitress and raising her ten year old daughter.

The Emergency Room doctors diagnosed Michelle with fibromyalgia on her first trip. They refused to do X-rays, she said.

On her second trip, Michelle said, the doctors turned her away.

On the third trip to the ER, a doctor heard a disturbing sound in Michelle’s lungs and rushed her into X-rays.

The cancer had infiltrated her entire lung, causing it to collapse.

“The lung was so thickened with cancer that it could not inflate,” Michelle said, “And there was scar tissue building up around the lung.”

Michelle was 29.

“We have lung cancer in 30 year olds,” Jaiyesimi said. “We have lung cancer in 25 year olds.”

“I think I may have been sick for years…and not have known it,” Michelle said.

No Words, No Music

Tori Tomalia, 39, of Ann Arbor, could not listen to songs or open a book for one month after her doctors diagnosed her with metastatic lung cancer in spring of 2013.

“I couldn’t deal with anything that tapped into that artistic emotional side, because it would force me to deal with something I wasn’t ready to deal with,” Tori said.

“I’m always questioning things, and I always want to learn more. I didn’t want to know anything,” Tori said.

Tori keeps up a blog “A Lil Lytning Strikes Lung Cancer.”

She’s a passionate theater artist, dedicated to a type of theater that, in her own words, is about “being in the moment and creating things as they happen.”

In the Facebook photo for her blog page, Tori is a petite woman wearing glasses, surrounded by a family of five: her husband, a towheaded little boy, and identical toddler twin girls. They sit in fallen leaves.

“My biggest concern was the kids,” Tori said. “….They were babies. Just thinking I was going to be leaving them was devastating.”

Her sister found the blog of Linnea Olson, who had been surviving with stage IV lung cancer for approximately eight years at the time of Tori’s diagnosis.

Linnea Olson is now a ten year survivor, according to her blog.

After reading Linnea’s blog, Tori said she turned on the music again.

Tori found scores of patients living with stage IV lung cancer on a website called INSPIRE, a network where patients of all types of illness can congregate with each other, she said.

Molly, Lisa, Emily, Samantha, Corey—the list stretches on—all live with stage IV lung cancer under the age of 50 and blog about it.

Tori said she now “knows” all of them.

“Why is everything so dire?” Tori said. “And it is dire. A lot of people have died from it. A lot of people do die from it.  Just knowing there some people who were able to manage this as an ongoing disease rather than an immediate death sentence…made me start to feel like myself again.”

“It’s a hard balance. Because on one hand, you don’t want to be be like, oh you’re going to be fine. You do need to accept that it’s incredibly serious what you’re dealing with,” Tori said.

Tori said she had difficulty accepting that she would have to be on treatment for as long as she lives.

“They feel exhausted…” Shahin Ip, a support group leader at Gilda’s Club Detroit, said. “Even with a targeted therapy, they still experience side effects.”

Tori said she needs 10 hours of sleep per night, an almost impossible task with three toddlers.

Her medicine, Xalkori, makes her sick to her stomach many mornings.

Michelle’s original treatment—chemotherapy and whole brain radiation for brain metastasis—terrorized her at first.

Her lung cancer had spread to her brain and to her abdomen.

“I looked like I was eight months pregnant,” Michelle said of the tumors in her abdomen.

She said she became so incapacitated she had to move in with her older sister.

Michelle’s ten-year old escorted her to the bathroom, helped her maneuver her oxygen tank, and fluffed up her pillows in her in-home hospital bed.

“It took a lot for her to be around me when I was sick. I think it made her a stronger person though,” Michelle said.

Michelle went bald twice, first to chemotherapy and then to whole brain radiation.

“When you lose your hair to brain radiation, your whole scalp feels like it’s sunburned,” Michelle said.

In January of 2013, doctors told her she had eight to ten months to live.

Michelle had a “bucket list,” but her body prevented her from doing most of the activities on it, she said.

“I spent a lot of days with my boyfriend bawling my eyes out because I didn’t know what to do. Because I couldn’t do most of the things I wanted to do. I wanted to go hiking on this awesome mountain….and I wasn’t able to get very far. I wanted to go on a bike ride in the city, and I couldn’t get very far then either,” Michelle said.

Michelle recalls a particularly dark day. Sitting in her car, she broke down with her hands and heart turned up to the Heavens.

“Please God,” she wailed. “I just need more time. I just need more time.”

Tori can empathize with that feeling.

“I’ve never been so intensely aware of how quickly it could all just be gone. And its a wonderful thing to know, but it’s also really heavy knowledge,” Tori said.

Parking Spaces

Michelle and her boyfriend decided to drive to the beach. The beach was swarming with people.

They encountered a man standing in the middle of a parking spot, trying to save it for his friend.

Michelle remembers the conversation between her boyfriend and the man:

“Hey, could you please move?” her boyfriend asked the man. “My girlfriend has cancer. We need to park close to the beach.”

“You guys shouldn’t lie about that,” the man responded. “That’s a horrible thing to lie about.”

“We’re not lying,” her boyfriend said. “We would never lie about something like that.”

The man surrendered his parking spot.

“Sometimes people don’t believe,” Michelle said. “They look at me and automatically assume that I’m okay….now that I don’t need my oxygen tank.”

Ip speaks to the lack of “empathy” she’s witnessed towards stage IV patients in the support group even from other cancer patients.

“People in earlier stages….express using terms, ‘oh dear, i feel so sorry for you’ or ‘oh man, what’s your quality of life like?’” Ip said. “Statements like that can be very, very hurtful to patients with  advanced stage cancer.”

Heing said she usually doesn’t tell people her disease has progressed to stage IV.

“That detail tends to evoke unnecessary concern and sympathy, which I do not want,” Heing said.

“People do not want to accept that this is not curable,” Tori said.

Tori said she has heard all of the cancer platitudes from acquaintances and loved ones: “ you’re a fighter,” “ you’ll beat this” and “no, no, you’ll be fine.”

“It’s almost like they’re in denial too,” Tori said.

Stage IV cancer patients often play dual roles in their treatment process: the patient trying to survive, and the researcher keeping up with the marathon of new treatments and clinical trials, according to Ip.

Ip said they spend hours on forums, instead of depending on their doctors to inform them of their treatment options.

This fervent commitment to research saved Michelle’s life.

Michelle had just received her swan song date from the doctors. Her brain tumors kept her in a semi-permanent somnolent state.

“I kind of gave up a little bit,” Michelle said.

Another cancer patient told her to continue to, in her own words, “fight” her disease.

While Michelle slept, her two older sisters poured through websites, and made many phone calls to see if anything could rescue her.

They called doctors working on a clinical trial at University of California Irvine, told them Michelle’s story, and gave them her medical information.

Michelle remembers the words of the doctors:

“We need to see her immediately,” the doctors told her sisters.

Michelle said she has been on the clinical trial for almost 18 months.

Her tumors have shrunk and stabilized. She can now ride a bike and walk on the beach without an oxygen tank.

“That really was my saving grace,” Michelle said.

Improvising

Tori and her husband plan to unveil an Ann Arbor improv theater/brewery in October, 2015, something they had always yearned to do.

Tori said this business has been a crucial way that she has grappled with her diagnosis.

“One of the ways I cope with this is I don’t think about the future very much….because today and tomorrow, I will probably be fine,” Tori said. “Who knows? Six months? A year? I have no idea when this will stop working.”

“But the business has allowed me to think about the future in a way that’s a little bit separate from myself….I can think of the business as having a life of its own, of living on beyond me,” Tori said.

When the business opens this fall, visitors will sip their beer and laugh at the unscripted world blooming on the stage.

Tori says there’s a little metaphor for living with stage IV lung cancer in her business.

“The past couple of years have shown us you never know what’s coming, and you just have to just jump in and say, okay, this is the situation, and I’m going to move forward,” Tori said. “Which is exactly what improv is all about.”

Michelle has returned to college where she will study to become a software engineer.

Soon, she said she hopes to volunteer at Children’s Hospital with children who have cancer.

“I want to make a difference in the lives of kids living with this disease,” Michelle said.

The drug saving Michelle’s life has yet to be approved by the FDA, she said.

“It should be approved soon,” Michelle said.

Heing’s targeted therapy drug has since stopped working, according to her blog. She has started on chemotherapy.

Yet, Heing said she “remains hopeful.”

“I remind myself….that I can be an outlier,” Heing said.

Tori said she reads about the abundant new research in lung cancer treatment where she gleans hope.

“I had a friend with stage IV say, if he can make it three more years, he can make it thirty years,” Tori said. “He thinks, in the next three years, we’ll see really big changes.”