The LUNGevity Blog

By Nikki Campo

In March, 2011, my mom was diagnosed with pleurisy.  Except it wasn’t pleurisy.

After a couple rounds of antibiotics, the pain in her chest was still there when she sneezed, and her energy level was low.  I like to think I know my mom better than anyone else (maybe my dad would beg to differ), and she just didn’t seem like herself to me in the months that followed.  When May rolled around, my now-husband and I had one month remaining until our wedding, and I had decided to spend one week of that at home with my mom to finalize wedding plans, relax, and have some mother-daughter time.  That week, during a no holds barred wedding week fashion show for my mom (I trust her twenty-plus-years-in-clothing-retail fashion sense to my not-so-keen one), she had to excuse herself to take a nap.  And I will never forget that moment for as long as I live.  I knew something was wrong, and there was no escaping that knowing.  I stood in my rehearsal dinner dress and heels at the dining room table and became aware of my heart beating.  That day, I asked her to get a chest x-ray, and I asked my dad to make sure she did.

She had the chest x-ray the week before our wedding.  The results showed spots covering both lungs, but since she was 57, a never-smoker, and healthy, the doctors repeatedly assured her it wasn’t cancer.  They thought it was more likely a fungus, tuberculosis, or scarring from a past case of pneumonia.  Another round of tests for those came up negative, and so she was given the OK to head off to Mexico for our wedding, knowing there would be more tests to come upon her return.  The wedding was perfect.  One week in Mexico with our immediate families, and everyone had a blast.  We have memories to last us forever.  Back then, in that week, everything was ‘normal’ everything was perfect, everyone important in my life, as far as I knew, was well.

Six days later, on June 22, 2011, a bronchoscopy revealed our worst nightmare: adenocarcinoma of the lung.  I still can’t shake the horror of the ‘finding out’ conversation.  My husband and I were back in the states, but in a hotel in Chicago.  I knew the test results were coming back, and so I had called my parents at least 5 times each, but got no answer.  I was sick to my stomach.  Finally, my dad answered and gave me the news.  In a daze, a breathless and alternating mix of tears and silence, my husband and I rented a car and drove 90 miles home to Rockton, Illinois where my parents live.  From that day forward, our lives were changed.

Further testing at Mayo Clinic the following week revealed a spread to a mediastinal lymph node, indicating her cancer was stage IV.  The cancer covered both lungs in a so-called miliary pattern that my parents described back then as something akin to snowflakes.  A quick peak online at prognosis statistics was plenty to send me straight back into a personal nightmare so devastating I can’t put words to it.  But after a few days of misery and not doing much other than crying, blankly staring at a wall, or hugging my ever-strong, ever-comforting, and always-smiling at everyone, mom, I threw myself into research.  There is a LOT to learn when it comes to lung cancer!  Per the suggestion of a survivor and now friend, I ordered a 500-page report from Dr. Ralph Moss on lung cancer, accumulated and read books and articles galore, and scoured the earth for legitimate resources that could help me understand the disease and also provided something that allowed me to feel hope.  It was in this time that I first came to know LUNGevity, and have leaned heavily on its research and resources ever since.

In the end, we decided, prognoses aside there was hope.  Adenocarcinoma of the lung is on the rise among never-smokers, and no one quite knows why just yet.  But there is a population of people for whom the relatively new targeted therapy called Tarceva, an oral pill taken once daily with minimal side effects, works well in both reducing tumors and prolonging life.  One of the traits of that population is possession of the genetic mutation known as the EGFR mutation.  Long story short, my mom has it.  We rejoiced.  We had hope that she would beat the odds.

In the two months that elapsed while we fought with insurance about why they should cover Tarceva, my mom did not take any prescription medications.  She had decided that intravenous chemotherapy was not for her.  Instead, we drastically overhauled our diets to be whole food and plant-based with few processed and refined foods and she started on a supplement regime prescribed by the wonderful integrative cancer care physicians at the Block Center in Skokie, Illinois.  (Sidebar: my gracious employer, Bain & Company, granted me a leave of absence to stay with my mom and my wonderful husband, who currently lives in California, did the same.)  By the time Tarceva was approved in August, my mom’s chest pain was lessened, the slight cough she had at night was gone, and she wasn’t napping anymore.  I’ll never forget when her oncologist, upon listening to her lungs with a stethoscope for an unusually long time said with a furrowed brow, “Dena, I’m listening for bad, but I don’t hear bad.  Your lungs sound great.”  She’s an oddball, and we like it that way.  After all, doesn’t it hold that an oddball would be more likely to beat the odds?

On November 29, she had her first CT scan since starting Tarceva in mid-August.  To our surprise, the cancer was reduced by 50%!  We were absolutely thrilled.  I had read in a few places of patients who were happy with 10-20% reduction over the course of many months, so to get 50% in just three months felt absolutely miraculous.  There was simply no better way to head into the joyous Christmas season.  Most importantly, my mom felt better than ever.

In fact, she will tell you that she feels better now than she has in a very long time.  Maybe that has something to do with the fact that she decided to retire from her job in retail which could carry with it some stress, and instead is focused on living life to the fullest.  My mom and I love to practice yoga together.  We take a cooking class sponsored by the Cancer Project held at Healing Pathways in Rockford, Illinois on Tuesdays.  Recently, she started with a 12-week program at the YMCA sponsored by Livestrong, and is also fulfilling a long-time dream of earning her Master Gardener Certification.  She’s a busy woman!  But I think what she most loves is getting to spend more time with her two grandbabies and the rest of her extended family and wonderful husband, and all of her many friends.  We continue to thank God for His mercy and grace in her life.

To everyone affected by lung cancer, know that there is hope.  Know that you can advocate for your health, and that there are wonderful resources available to help you do that if you want to!  My advice would be to talk to your doctor, ask every question you have, look online, read books, find support groups, and talk to those who’ve gone before you.  My mom and I also love talking to others afflicted by this disease, whether you’re feeling hopeful or not.

We’re not physicians, and we certainly don’t have all the answers, but we do have HOPE, and we would love to share that with you.

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My mom is truly a rock star!  To showcase her awesomeness, we have opted to make Breathe Deep events a family affair.  Our first was the 5th annual Pauline Moraco-Arredondo walk in Chicago in October 2011.  We made matching Campo Family t-shirts for that event that we now sport at other events.

The other two Breathe Deep 5K events for our family in 2011 were in Nashville, Tennessee (my sister’s family and my parents participated) and then in San Jose, California (my husband and I participated).

We look forward to more in 2012!

Thanks LUNGevity for all you do!