Jillian at work

Jillian at work

For 10 months, I didn’t want to talk. When I did, I asked questions—lots of questions. I was better at note-taking and writing to myself than talking. As a daughter, wife and mother, I had different voices: “What time is your doctor appointment, Dad?” “How was your day, honey?” or “Did you get all your homework done?” I had never been an advocate in the sense I am today.

In July 2012, at age 28, my daughter Jillian was diagnosed with stage IV lung cancer, adenocarcinoma with metastases. For 10 months, I didn’t want to talk about what was happening to her, to me. . . to us. I wanted those trivial conversations, because I couldn’t wrap my head around her diagnosis and prognosis. That all changed when she succumbed to this insidious disease in May 2013. When that happened, I needed to channel my grief and tremendous loss into something for good. I began doing more than maintaining my “Google MD”, which I earned while trying to make Jillian better. I started really researching lung cancer and this new community I found myself wanting to be a part of.

In following Jillian’s lead, it was apparent to me that research was the only way to make a change for someone else who would have the same diagnosis. I also realized that people’s perceptions needed to change. What I didn’t know was that Jillian was not an exception.

I don’t know what made me angrier. That Jillian wasn’t the only person in the unseen and under-represented population or that there was and is an unseen and under-represented population. What population is it? It is the young, under 45, never-smokers and women who, today are being diagnosed just like Jillian.

Sadly, most people still think that lung cancer is deserved and a smoker’s disease. The truth is that smoking causes many cancers including breast, prostate and colon. Then we get down to the facts: 1. Lung cancer kills more people than those cancers combined!
2. Lung cancer receives the least amount of funding. 3. There is no early preventative test for lung cancer as there is for the others. And anyone, ANYONE can get lung cancer. There! I said it! Now we can deal with the elephant in the room.

For six years, I walked for breast cancer because like most women, I thought if I had to be concerned about getting cancer, it would be breast. In 2008, I learned in a lunch conversation with my mom that back in 1978 my grandmother had died from breast cancer. Really? My mother didn’t think it was important to share that tidbit with her daughters. She also had to be reminded to get her mammograms. Really!! So, I decided to walk as a way to advocate for women, breast cancer, and education. . . lives. I didn’t know that since 1987 lung cancer has claimed more women’s lives than breast cancer. I found out the hard way, by losing my daughter to lung cancer and becoming her voice. Let’s face it. . . Breast cancer is pink and pretty, and we all know someone affected by it. It gets attention; people know about it, people have conversations about it. People don’t talk about lung cancer. It isn’t pretty, doesn’t have a pretty ribbon, and no one has conversations about it.

After losing Jillian, I wanted to shout at the top of my lungs, “She is the face of lung cancer!” She was attending graduate school, young, athletic, healthy and a neuro-surgical intensive care nurse. I wanted someone to hear my story, Jillian’s story. She never had any symptoms. By the time she was diagnosed, the cancer had mutated and could be found all over her small frame. The prognosis was dismal, cruel, and I found myself in denial. After all, I’m a mom! I can put a Band-Aid on it, kiss and make it all better. Not at all!

The stares and glares Jillian received while going through treatment were awful. Having witnessed this firsthand, I felt strongly that people’s assumptions in the thoracic clinic and elsewhere had to change. The notion that even at her young age she deserved this has to change. This disease has changed and is continually changing in each person affected. It’s time all of us change, too. We need to talk about it. Educate people about what lung cancer is and isn’t; who can get lung cancer; raise awareness that even today over 224,000 people will be diagnosed with a form or stage of lung cancer and that over 45,000 young adults will be diagnosed this year. That’s the total of lights on the Christmas tree in Rockefeller Center. Think about that.

So, now, can we talk about lung cancer?

Ros Miller

Dianne & Shari Sussman, Breast Cancer in remission

Wear To Now was conceptualized in honor of my late grandmother, Hada Bejar Garcia, who lost a two-year-long battle to stomach cancer on March 1, 2014.

Growing up as the daughter of famous Spanish actors, she spent her childhood acting and greeted fame in her early teen years—beautiful and talented, many referred to her as the Cuban Marilyn Monroe. For many years, she enjoyed the lavish lifestyle that accompanies stardom. And though she lost her fortune at the start of the Cuban Revolution, she carried that element of glam with her throughout her life

We shared a love of fashion and would spend countless hours discussing the latest trends, share our recent purchases, and dedicated at least an hour of every visit rummaging through her closet.

Our relationship, however, was much deeper than just discussing clothes.

Jannelle Achaval, Clear Cell Carcinoma in remission

My grandmother was very wise—she was a beautiful writer and incredibly well-read. Prior to her passing, I felt very lost with the direction of my career. I didn’t know who I wanted to be or how I was going to get there. I just knew what I was doing at the time wasn’t fulfilling.

She’d patiently listen to me rant, and she would always conclude it with the simplest answer: “Stop putting so much pressure on yourself—it will come to you. Be patient.”

When my grandmother was diagnosed with stomach cancer, I believed to my very core that she would make it, never taking into account the emotional support that would be required, not just by the family, but by social workers and doctors alike. As her cancer spread, the tumor began to grow. And she began taking chemo pills, leading her to sink into a depression, which she began to display in her appearance.

Lori Cuellar, Skin Cancer (Melanoma) in remission

My once glamorous grandmother no longer had the energy to dress up. She was frail and skinny and didn’t want to go anywhere. But even so, when I’d visit her in the hospital, she’d talk about the jewelry and clothes I would eventually inherit with the utmost enthusiasm—so much so, that her heart rate would increase, and the nurse would tell us to change the subject.

When she passed, I inherited it all with the promise that I would treasure it and one day give half of it to my little sister when she was old enough to care for it herself.

At first, I had no idea what I was going to do with my new collection of jewels and lavish clothes. I wanted to use it as a way of remembering her, but I had no idea how I would do that.

Then, one morning, roughly two weeks after she passed away, I woke up and the concept of Wear To Now came to me—just how she had promised. I wanted to create a philanthropic fashion blog that helped cancer survivors discover beauty and art in their scars, while focusing on their plans, goals and dreams for the future.

Zely Santos- Formenta, Lobular Carcinoma in remission

I wanted to provide them with the emotional support my grandmother lacked. I wanted to show them that despite their new physical appearance, they were still beautiful and even if they were scared or weak, they still had the strength to make it. I wanted them to focus on the future, looking past their current situation and dreaming of the day that this would all be a distant memory and that their goals and their ambitions would one day come into fruition.

Most importantly, I wanted to give their battle purpose—I wanted them to realize they were an inspiration, not just for those battling cancer, but everyone battling any emotional or physical hardship.

If I could give them purpose, then my grandmother’s passing had purpose.

Wear To Now officially launched in October of 2014. We come together about once a month to photograph and film a new cancer survivor—so far, we’ve worked with seven models.

Photo 2

Dawn Graciano, Breast Cancer in remission

Each photo shoot is tailored to the story, personality and scars of the model. Providing professional hair, makeup and wardrobe styling services, the women are all made up and photographed, always encouraged to show their scars. The entire process is filmed, and the women are asked to share their story on camera.

In honor of my grandmother, I always incorporate at least one item that once belonged to her.

Edyna Beatriz Garcia

About Wear To Now:

The Wear To Now team includes photographer, Leslie Lyn of Flash Addiction, videographer, Dalia Madrid, makeup artists Natasha Armada of Armada Artistry and Ilka Perez of Mindset Beauty and hairstylist Jaclyn Jorgenson of MamaJax Beauty.

Other participating talents include Alexandra Murphy of Alexandra Murphy Photography and Francy Nunez of FCN photography.

For more information visit www.weartonow.org, like us on our Facebook Page www.facebook.com/weartonow or follow us on Instagram or Twitter, @weartonow.

Carpe diem! Rejoice while you are alive; enjoy the day; live life to the fullest; make the most of what you have. It is later than you think.

— Horace

If you live in the contiguous 48, you know few things are as exciting as freshly fallen snow. I remember as a 4-year-old making my way downstairs from our North Seattle home to fetch Dad the morning paper. Upon opening the door that early December day, I was surprised by the precious little tufts of white floating down to their final destination.

I immediately bolted back upstairs, tore into my sleeping sister’s room, and screamed at the top of my lungs that it was “SNOWING!” She, being tired of my pranks, decided I was calling wolf, rolled over, pulled her pillow over her head, and snarled, “Go away; you’re annoying.” In my glee, I continued trying to motivate her to rise, get dressed, and come see for herself. She continued to protest, concluding, “There’s no way it’s snowing. It’s way too warm, and it wasn’t snowing last night when we went to bed.” I enthusiastically replied, “Well, then I’m not sure exactly what it’s doing, but it’s falling from the sky and there’s lots of it…and it’s white!” She finally got up.

Perhaps I’m presumptuous in stating the entire Lower 48 feels the excitement of snow since those in Buffalo, Minneapolis, Cleveland or Denver, may not share my enthusiasm. That said, if you live in Seattle, snow is a BIG deal. If you’re skeptical, just turn on the local news—even the remote prospect of snow on the horizon would make you think Jesus himself had sent a press release on his eminent arrival.

When the fallen snow reaches a depth of one inch (or less), you can count on Jim Forman of KING 5 News to be perched at the base of Queen Anne Hill donned in parka, stocking cap and gloves, sensationalizing the event with his chirping quips, “The best advice is, IF you don’t have to go out…DON’T…Live from lower Queen Anne, I’m Jim Forman KING 5 News.” It’s a joke, but it does get viewers to watch and thus sells advertising.

When my kids, Riley and Emily, were 7 and 8 respectively, we received one of those wonderful winter storms. The conditions were perfect the night before, and one could see the dull gray sheet of cloud cover roll in from the west. Anyone with a Seattle heritage knew exactly what was in store. The temperatures were sub-freezing and not remotely affected by the warmth the cloud cover often presents. With the impending storm, the air filled with the excitement only kids can create at the prospect of playing in the snow while school is cancelled.

That night, I emailed my employees to inform them not to attempt to make their way to the office. Seattle comes to a complete standstill with even the slightest amount of white on its roads. With our laptops, we could function without physically being in our offices.

The next morning, we awoke to a blanket of pure delight—four to five inches of untracked velvety white scenery. The kids wolfed down their breakfasts while their mother struggled to pull coats, boots, hats and gloves over their excitement. The sense of urgency filled the room and expanded to every corner. Boom—they were out the door with shouts of joy and sleds in hand.

We were fortunate to live on a dead-end street with a short yet steep hill. It was the perfect run for kids their age since they didn’t have to walk too far or long and could still experience an amazingly fast ride. But it was steep. So even at a young age, a dozen treks in five inches of snow uphill with sled in tow was a meaningful workout.

My wife summoned me out the door that morning to share the experience of all that was good; family, snow, kids, dogs and the joy it all brings. Still in my pajamas, I stated I’d be “right” out—I needed to check email first to make sure nothing was on fire.

I found my way into my home office and proceeded to respond to several dozen emails that materialized overnight. About an hour into it, my wife appeared in the door with snow, sweat and a smile, to ask, “Are you coming? The kids are having a ball. You’re missing a great time.” I told her again I’d be “right out” and sunk my head into my screen to continue my email responses.

More time transpired, and once again, my wife popped her snow-clad self in the door. This time, she was a bit more agitated and imploring that I needed to get out from behind my computer, get dressed and get outside. Some more time transpired before I found my way to sifting through the closet of snow clothes.

I appeared on the scene to find exhausted, wet, soaked kids with red rosy cheeks. They were done, and the snow that had been so pristine had taken on a different sheen. Rain had begun and the freshness of the early morning had melted into the afternoon.

As the kids made their way to the house to warm themselves with cocoa, my wife looked over her shoulder at me and quietly said, “You missed it.” I stood there by myself with the kids’  sleds in hand while rain dripped off the end of my nose.

It brings me great sadness on many fronts to recount this moment. To chronicle it for posterity’s sake only serves to deepen the crevasse I feel in my heart. I champion myself as someone who spends little time contemplating the past, because it’s just a huge waste of energy when there’s nothing you can do to change it. Regrets, I have few. Yet this memory haunts me more than I care to admit. I recall telling myself, “We’ll do it later; it’ll happen then.” Unfortunately, the next year the kids were older, and it didn’t snow. I had missed it.

If you were to offer me a million dollars to recant what was so important to spend the morning sitting in front of my computer in lieu of sledding with my kids, I’d come up empty. Blank. I can’t remember the contents of a single of those emails. Yet I can recount the sights, smells, and excitement of that snowy day with such clarity it could have happened today. What does that say? Sitting in your home office pounding out meaningless emails, or sledding with your kids during a once in a lifetime moment—which matters more?

Had I had cancer that glorious day with the kids running around my feet, without question, I would have been with them the entire time. No questions asked. No emails returned. No excuses given or expected.

Are you missing it?

If you are, please take a moment and live your life as if you have cancer.

Randy Broad

________________________

Randall Broad is a lung cancer survivor and author of,

“It’s an Extraordinary Life”

Carol Preston interviews leukemia expert at ASCO 2015

Carol Preston interviews leukemia expert at ASCO 2015

Editor’s note: This blog originally appeared on the site of our partner, the Patient Empowerment Network.

When my kids were little, I loved reading to them Arnold Lobel’s Frog and Toad books including “The Corner” in Frog and Toad All Year. In it, Frog assures Toad on a cold, rainy day that spring is just around the corner. Frog says that when he was younger, on a similar cold, rainy day, he searched for spring around many corners until he eventually found it—sunshine and flowers—around the corner of his house.

And so it is with us cancer patients, constantly peering around every corner for the still elusive cure. Researchers at ASCO 2015 offered the most encouraging, hopeful news yet that we won’t have to look around the corner much longer.

Or will we?

Cancer is a tricky disease, in fact many tricky diseases, constantly morphing and exploiting loopholes to outwit us. The buzzwords at this year’s annual meeting in Chicago included “immunotherapy,” combination therapy and “biomarkers.” Immunotherapy has become the fourth arm to battle cancer, after surgery, chemotherapy and radiation. On the upside, scientists are making great strides to develop ways for the body’s immune system to fight the cancer. These are called checkpoint inhibitors. Inhibitors basically release the brakes in cells to allow our immune systems to charge and attack the bad guys, e.g., cancer cells. And since the cancer is being attacked at a molecular level, this should work for everyone. But it doesn’t. And that has proved vexing to researchers. Every specialist with whom PEN spoke at ASCO—from melanoma to lung and prostate cancer to colorectal disease—acknowledges that they don’t yet know why the inhibitors aren’t working for all of us.

That’s where the biomarkers come in. Researchers are working to identify specific markers on an individual’s cell to determine if a specific anti-PD1 or PD-L1 inhibitor will work on a patient. Or why it won’t work.

For my cancer chronic lymphocytic leukemia, CLL, combination therapy made headline news at ASCO. Through clinical trials, scientists have found that combining BTK (Bruton’s tyrosine kinase) inhibitor, ibrutinib, with a standard chemotherapy called bendamustine along with the monoclonal antibody Rituxan yielded an 80% response rate. That’s a “wow,” but it still isn’t 100%. What is it about the 20% that their bodies resisted the combo therapy?

Maybe the key to unlock the mystery lies with genetics. On the last day of the conference, ASCO announced a joint effort with the NCI, National Cancer Institute, to conduct basket trials. These trials group patients together with specific genetic mutations in a patient’s tumor rather than the location of the tumor. So a prostate cancer patient may achieve complete remission or, dare we say, cure by being treated with a drug developed for breast cancer because of the same genetic mutation found in both.

Will that be the magic bullet that cures cancer? I am optimistic that the answer is just around the corner.

Carol Preston

Wear To Now was conceptualized in honor of my late grandmother, Hada Bejar Garcia, who lost a two-year-long battle to stomach cancer on March 1, 2014. Growing up as the daughter of famous Spanish actors, she spent her childhood acting and greeted fame in her early teen years—beautiful and talented, many referred to her as […]

Read Article

Oral cancer therapies seem poised to revolutionize cancer care for many cancer types. More convenient, more effective, and often less toxic. But…they are quite expensive—in many cases, more than $100,000 a year per patient. And some experts have been discussing combining two drugs. Think of it, that’s more than $200,000 per year. We must talk […]

Read Article

There is nothing like the shock and confusion felt with the words, “I’m sorry, you have cancer.” However, with those words, my journey began. Following 48 hours of exams, tests and scans, I was diagnosed with non-advanced anal cancer. According to my medical team, my physical response to chemotherapy and radiation treatment was similar to […]

Read Article

Some words from the past centuries Eastern European Jewish dialect, Yiddish, have crept into our vocabulary. As I wrote about last year, my favorite is “schmooze,” defined as: “to chat in a friendly and persuasive manner especially so as to gain favor, business, or connections.” Personally, I think this definition misses an important quality of […]

Read Article

Care partnering is exhausting. It annihilates your days and trumps your sleep. Its paradoxes require the most delicate of balancing acts between negative thoughts and a positive attitude; of knowing when to establish control and when to relinquish it. It even tampers with your feelings of guilt and love. Care partnering can be isolating. My […]

Read Article

This past weekend Andrew and I traveled to Niagara Falls, Canada to join more than 200 CLL patients and their care partners to learn about the latest developments in treatment from top researchers and clinicians, to find out about clinical trials, and to make connections with others like us as a means of mutual support.  […]

Read Article
July 2015
M T W T F S S
« Jun    
 12345
6789101112
13141516171819
20212223242526
2728293031  
Older Reset