Sunday, May 31, 2015

Cancer as Rebirth

Two. This month marks my second anniversary of living with stage 4 lung cancer. Two years ago at this time, lung cancer burst into my life, kicking and screaming, demanding all of our attention and making our family completely alter our lives to accommodate it.

Those first few weeks were a fog. Just make it through this day, this hour, this minute. As the months went on, we gradually grew accustomed to its presence and learned how to live with this new creature in our midst. I learned to take those tentative first steps — to get my legs under me again. A stumble, a trip, then finding the courage to pull myself back up and try again. Trying to find a voice, to speak this new reality. Find words to communicate and describe this new landscape. I learned to grow into this new identity, to develop my new sense of self.

Two years ago today I got that devastating phone call that confirmed it. No more hoping that my severely impaired breathing was due to an unusual strain of pneumonia or some bizarre infection. The biopsy confirmed it: lung cancer.

Two years ago today all I could focus on was getting oxygen into my body.

Today, I spent the day at the building we are transforming into our dream business, where I prepped the rewards packages for the people who donated to our fundraiser. Tonight I spent the evening at my son's school ice cream social, watching the kids run around the playground with their friends, negotiating with them how many ice creams they could get and enjoying the sun and breeze.

Two years ago I ate dinner lying on the couch, too weak to sit at the table with the family.

I guess you could say that the old me died on that fateful spring day in 2013 when I got the devastating news. The person who I was prior to that point is gone now. The person who could talk casually about growing to old age. The person who could commit to future events without a voice in the back of her head whispering, "if I'm still here then."

But it is not all bad. A new person has arisen from the ashes. A person who is not afraid to take chances, be bold or speak up. Over the past two years I have found a new voice. I have found my footing, taken my first steps and learned to walk again. Among other things, I have become a person who can rattle off the names of half a dozen tyrosine kinase inhibitors currently in clinical trials and a person who drools over news from ASCO. I'm someone who thinks frequently about end of life, who walks alongside sickness and who knows a shocking number of people in various stages of dying. I'm someone who no longer feels afraid of talking about these taboo subjects. And someone who understands the painful, beautiful brevity of our time here on Earth.

Two years living with metastatic lung cancer, and today I am a billion times healthier than I was when they (finally) figured out what was wrong. Two years and still kickin'. Who woulda thunk it?

Originally published at:

Friday, May 15, 2015

The Changing Face of Cancer Care

I've had a ringside seat to the evolution of cancer care.

The first time I heard the heart-dropping, stomach-churning, breath-stealing words, "you have cancer," I was 14 years old. The second time I heard them, I was 37.

The first time, a chronic ache in my shoulder turned out to be bone cancer. The second time, a chronic cough turned out to be metastatic lung cancer.

When I was a teenager undergoing chemotherapy for osteosarcoma, I never really thought I was going to die. Me and my teen cancer comrades in the hospital went through hell together. But I naïvely thought we would all get better and go home again one day.

I have seen cancer through an adolescent's eyes, and I have seen it through the eyes of a mom with three small children.

I was a busy mom, working, going to grad school, and raising our four-year-old son and two-year-old twin daughters. I was tired all the time, but who wouldn't be? And I had a string of chest colds that I just couldn't shake. Or maybe it was asthma. But a shelf full of asthma meds weren't improving my breathing. I stopped going upstairs to tuck my son in at night, too winded to read bedtime stories. I couldn't walk around carrying my little girls anymore; I could hardly walk across the room without panting. It wasn't asthma.

"Mama, I wish you didn't have cancer. It was nicer before you were sick."

I was 15 years old and in the hospital receiving chemo when the anti-nausea drug Zofran was FDA-approved in 1991. It was like the clouds had parted and I finally could see a ray of light through these wretched treatments. Prior to that, we had to take our chemo straight up. I spent my first several months of treatment vomiting all day long. Nothing stayed down, so I was sustained by IV nutrition. I roomed with another young cancer patient at the hospital, and she made it into a game; with each new spew, she would tell her mom to add that to the running tally on the whiteboard. Dark humor gets you through some rough times.

I have been cured of cancer, and I have been terminal.

The whole wing of the hospital was silent the afternoon Karen died. She had been in a coma for several days. At one point her hand moved and her little brother took it as a sign that she was waking up. But then she was gone. She wasn't even 15.

Karen was gone.
Cancer is deadly.
I might die.

It’s the first time mortality — my mortality — really sunk in to my 14-year-old mind.

Learning that I had cancer again seemed like some sort of cruel joke. I had already paid my dues, marched through hell, undergone several painful bone surgeries and been declared 'cured.' But it was different this time. This time it wasn't just about me. I had three beautiful little faces looking up at me, counting on me to be around to wipe their noses, kiss their scraped knees, hold their hands during their first heartbreak, and applaud as they received their diplomas. Each dream of the future was being wiped away with each new metastasis revealed on the scans.

Your spine, your shoulder blade, your hip, your liver.

I had kept in Christmas-card-contact with a few of my teen cancer friends. I used to ask after them at each annual checkup, "How's Rob? How's Linda?" But the answers were not always what I wanted to hear.


"Decided not to continue treatment."

"Passed away just before Christmas."

I stopped asking after that. In those days, we didn't have online support groups, websites listing clinical trials or even iPads to pass the hours, days, weeks or months in the hospital. We had to check out the VCR in two-hour increments and the whole floor shared that one machine.

Now they can test a tumor and sometimes find the specific mutation driving the cancer. If you're one of the lucky ones, there is a pill to target that mutation. So far, I have been one of the lucky ones. But one day, my luck will run out.

My right arm was saved by a cutting-edge limb salvage procedure. My life is being extended by a brand new targeted therapy.

Then we were going for a cure. Now I have learned that 'cure' is not the only goal in cancer care. I have learned that it is possible for the some people to live with metastatic lung cancer as a chronic disease for months and sometimes years.

Cancer research is moving fast. Will it move fast enough to stay ahead of my cancer? I desperately hope so. There are three little people who are counting on it.

Originally posted at:

Tuesday, May 12, 2015

Lung Cancer Stigma

A few days ago there was a great article about the stigma surrounding lung cancer and the impact it has on patients. Check it out!

The lung cancer blame game

Also included in the article was a slide show with several people in the lung cancer club, including yours truly.

Slideshow: Faces of lung cancer

So enough with the blame already, let's work together and find a cure!

Thursday, May 07, 2015

Lung Cancer HOPE Summit

Imagine a room filled with 150 people who have lung cancer, many of whom are stage 4. Do you envision wheelchairs and oxygen tanks? Frailty and sadness? Then, my friend, you clearly did not attend the 5th Annual LUNGevity HOPE Summit in Washington DC this past weekend.

Every year, the LUNGevity Foundation hosts a weekend-long conference for lung cancer survivors and caregivers (you are a "survivor" the day you are diagnosed with cancer). In its first year, 17 survivors attended. This year, that number was 150. The weekend began with a welcome reception Friday night, where I finally got to meet the people who have become my online support community over the past two years. Saturday and Sunday consisted of sessions on topics of interest to people in the lung cancer community — nutrition, surgery, clinical trials, advocacy, and more. Saturday night's dinner was at a lovely outdoor restaurant called the Old Angler's Inn, which provided delicious food and drink as well as live music. We certainly felt pampered! I am very grateful to have received one of the travel grants that LUNGevity provides to help offset the travel and lodging fees. Without this, many of those in attendance would not have been able to come.

Here are my top three highlights of the weekend:

Chris Draft

Chris Draft is a former NFL player who lost his young wife Keasha to lung cancer in 2011. Chris and Keasha founded Team Draft, an organization dedicated to changing the face of lung cancer. Not only is Chris a dynamic and inspiring speaker, but he clearly knows his stuff when it comes to the latest developments in lung cancer research. Thank you, Chris, for all you and your foundation are doing to help those of us living with lung cancer.

John Poirier, PhD

"JT" is an assistant professor at Memorial Sloan Kettering Cancer Center and is one of the researchers on the front lines of making change for the lung cancer community. His passion and dedication to this work comes through clearly in how he speaks about it. In addition to discussing the specific developments that are happening in targeted therapies and immunotherapy, he noted how the rate of change in research has ramped up significantly, with new discoveries coming out at a pace never before seen in lung cancer research. This information explosion provides enormous hope for us.

The People

Without question, the best part of the weekend for me was meeting all of the survivors and their caregivers. Talking with these people, I felt like I was seeing old friends that I had known all my life. In the terrifying early days following my diagnosis, reading the blogs of other people living with lung cancer provided a lifeline that helped me find my way through the fear. To finally meet this group of people in person was both wonderful and surreal. It was luxurious to be able to sit and chat over a meal, and learn even more about these people who had inspired me so much. Click here for a list of their active lung cancer blogs.

Thank you to all the people at LUNGevity who made this weekend happen. I now feel even more connected to the lung cancer community than before. If you are interested in attending a HOPE summit, click here to find out more.

To continue the conversation about hope in lung cancer, join the Lung Cancer Social Media (LCSM) tweetchat at 8 p.m. EST on Thursday, May 7. For more information about the "Spreading Hope for Lung Cancer" tweetchat, visit this link. I hope to see you there!

Originally posted at: