Keeping Time

by Karen Tollefson

The Time Keeper for Karin Tollefson's Blog 2014

The Time Keeper

This painting hung in our favorite southern California gallery and it drew both my husband and me to it each time we visited. Soon it became a favorite part of our collection.  The Time Keeper, as it was titled, was nothing more than a special piece of art hanging on the walls, until one day the irony of trying to “keep time” finally caught up with us.

A cancer diagnosis will do that to you; change your point of view.  Time is not something to be kept; it can’t be stopped, preserved or reclaimed.  When you are told you have cancer, time becomes a privilege, and with my family being handed two cancer diagnoses within a few short years, this painting became a poignant reminder that every moment matters.

When my mother was told she had lung cancer, it was as if time stood still and was racing all at once.  There was an urgency to act, start therapy, fight for her life, but all we could do was “hurry up and wait.”

Life as my mother knew it was gone in an instant, but it took time for her journey as a cancer patient to commence.  It was three months from when I first suggested her persistent cough might be more than allergies to when her treatment would begin.  It felt like a lifetime and it felt like no time at all.  Now, it strikes me that one month about lung cancer means something entirely different to a person living with cancer.

This month’s recognition is an important milestone, raising awareness, creating advocacy and generating momentum.   Lung cancer is gaining much-needed attention. For me, having lost a husband to leukemia and a mother to lung cancer, I am proud to speak out for those who can no longer advocate for themselves.

Long before I was ever personally touched by a cancer journey, my career was in oncology research and development. And now, with the lines of my private and professional life irrevocably crossed, my career has become all too personal.  I am reminded daily of the urgency for what we do and although continuous innovation has resulted in dramatic improvements in patient care, we still have far to go.  Oncology research is not a simple endeavor and by its very nature, cancer research has proven to be a cumulative process, with each advance building on that of a previous discovery.  It takes time.

As November’s spotlight on lung cancer comes to a close we should acknowledge the progress made in understanding the underlying biology of the disease and recent treatment advances.  Still, lung cancer remains the leading cause of cancer related mortality in the world and we have far to go to develop innovative treatments, improve early detection and eliminate stigma. We must keep the urgency- people living with lung cancer need us, far beyond November.  After all, there is a lot of living that can occur in a month when you have the gift of time.

I Am the Face of Lung Cancer

By: Deena Cook, lung cancer survivor and advocate

In the fall of 2011 my husband had an appointment with our PCP and asked me to come along because I had been coughing for 10 days or so and he thought I should see the doctor. That appointment led to a chest x-ray then CT scans and PET scans.

In July 2012, after monitoring several nodules for months, it was decided to remove and biopsy the larger nodule that had changed in appearance. I went into surgery not knowing if I had cancer. I came out without a lower left lobe and a diagnosis of stage one adenocarcinoma. I recovered well, went back to work six weeks later and was told to come back in six months for a check-up. No follow-up treatment was required! Piece of cake! My husband and I were excited about our upcoming retirement at the end of the year and we anxiously awaited the arrival of our 7th grandbaby.  Life was wonderful!

Deena, her husband Roger and their seven grandchildren in July, 2013

Our retirement in January of 2013 was celebrated with my six month CT scan showing that a nodule in my upper left lobe had changed. The biopsy showed cancer again. My second surgery took place in April, nine months after my first surgery and four days after our newest granddaughter was baptized.

My second tumor was also stage one adenocarcinoma. A second primary tumor. The official term for my lung cancer diagnosis is Synchronous Multi-primary Lung Cancer.

My second lung cancer diagnosis woke me up. I started to research this disease and became proactive in my care. I am among only 15% of lung cancer patients who are diagnosed when the cancer is localized. It was found incidentally. From all that I have now learned about lung cancer, I KNOW how lucky I am.

I wanted to make sure that others wouldn’t have to be lucky to be diagnosed at early stage for lung cancer. I have become a Lung Cancer Activist.

It took time to get over the stigma associated with lung cancer. I take responsibility for “being cool” and smoking when I went off to college, but I quit in 1988. I did what our government told me to do, but I still have lung cancer.

I am committed to fighting the stigma; to insisting that our government fund lung cancer research proportionate with its public health impact; and to mandating that a portion of the billions of dollars collected each year from tobacco taxes be used for lung cancer research and patient healthcare.

I am the face of Lung Cancer and intend to stay that way for a long time! By the grace of God, a loving husband and a diligent PCP, we just celebrated another stable CT Scan! Wooo Hooo!

 

I’m No Great Hero

By: Karen Rak

My older sister was diagnosed with lung cancer in July of 2005.  She died less than four months later.  She had quit a four-pack-a-day smoking habit some 25 years earlier.  A woman of athletic ability and lots of energy, she had lived for five years in Afghanistan, regularly trekking in the high Himals, even while smoking.

Karen, just five days after her surgery!

Karen, just five days after her surgery!

So in January of 2006 I had my first low-dose computerized tomography chest scan. I qualified because of family history and smoking history (I had quit a longstanding two-pack-a-day habit in 1992.  I think it was that awful cough that convinced me).

As it turned out, I had several nodules in both lungs, so the 2006 CT scan became the baseline. I was scanned once a year from then on, to track any change in the nodules.  There’s nothing to the scan, by the way.

In 2010, my newly-hired primary physician refused to issue a prescription for that year’s CT scan because of the radiation in the machine, notwithstanding that the one chest scan contained similar amounts of radiation as mammograms (a successful method for detecting breast cancer early, when it can be cured).  “It’s dangerous,” my doctor said, “and I won’t be a party to it.”

So my gynecologist wrote the “low-dose chest CT without contrast” prescription.

In 2012, the scan exposed changes in one of my nodules.  It was followed up by a needle biopsy, then a minimally invasive, video-assisted wedge resection of the offending nodule. It was adenocarcinoma. Slow-growing cancer.

I was pronounced cured and discharged 48 hours later and was climbing Blue Hill Mountain in Maine 72 hours after that.

My family and friends were extravagant in their shouts of joy and relief and congratulations on “getting through it” and “you old trooper” and the like.  I have to tell you, it was not that big a deal.  Even the pain was minimal and didn’t last long.

The truth is, I’m no great hero, and this wasn’t hell. Early screening for lots of other cancers is standard, because it works; because early screening leads to a cure.

For more information about your risk and where to go to get screened visit: www.atriskforlungcancer.org.

One Magic Pill and 24 Months Later

by: Michael McCarty, lung cancer survivor and advocate

Michael M

Michael in a meeting on the Hill, September 2014

It was a hot day in early August, 2012 and I was out running and ran into some friends on the road and decided to join them.   I knew for the last several months that my running pace was off and my workouts were less than to be desired but I kept thinking I was simply lacking motivation after running a half-marathon earlier in the summer.

As the four of us started off, I called on my body to push itself and set a healthy pace but my body had no answer and its silent stubbornness left me frustrated.  And after falling behind from the group, I stopped running and started walking.  My friends were kind and tried to reassure me that the heat was the cause.  However, I knew better.  And less than a week later, I felt a lymph node to start to pop out on the right side just above my clavicle.

After x-rays, CTs, several doctors’ visits (the doctors knowing I wasn’t a smoker and in good shape could only believe that I had some type of pulmonary infection) and a referral to a pulmonary specialist who couldn’t see me for another eight weeks, I was able to get a general surgeon to do a biopsy on the lymph node.

I will never forget the day he called me into his office to tell me I had lung cancer and it was advanced.  My wife and I left the doctor’s office and we sat down in the first chairs we saw and I then pointed to the survival rate I had written down on a piece of paper and I started to cry.  And for the next month, I was lost in a fog of anxiety, fear and anger as to why this was happening to me – a 43 year old runner, a lifelong non-smoker, a husband and a father of three.   Prayer seemed to be my only comfort.

I was originally diagnosed as Stage IIIB (adenocarcinoma of the lung which quickly became deemed Stage IV).  As to no surprise, I was deemed inoperable but was able to get into a trial at MD Anderson.  After 11 doses of chemo and 38 trips to the proton center, I received the glorious news that I was NED.  This lasted for about 11 months until I went into the hospital with double pneumonia.

There I discovered I had pleural effusion, pericardial effusion, nine (9) cm mass in the right upper lobe, nodules on the left lung, cancerous tumor on the spine, cancerous lesions in the eyes, many lymph nodes lighting up throughout my chest, and two lymph nodes pushing against my esophagus preventing me from eating.

Even though I made it home, I was in tremendous pain, on oxygen 24/7 and during a short month’s time I lost 40 pounds.   My local oncologist gave me months to live as the cancer was spreading and spreading quickly.  However, I was tested for the second time for the ALK mutation.  This time, I unequivocally tested positive for the ALK fusion.

I was placed on XALKORI (crizotinib) and within a week, my pain was gone, I was off oxygen, and felt well enough to get into the gym (although only for a very light workout).  Within weeks, my family and I were vacationing in the Keys giving God praise for what we call the “Magic Pill”.  My first PET scan showed no evidence of my disease and my last scan confirmed that I remain NED.

My doctors cautioned me that I am not in remission but merely suppression.  Call it what you wish, I have been given time, precious time, and during this time, now two years and counting, I want to help organizations like Lung Cancer Alliance to develop awareness about lung cancer and ensure that lung cancer receives equitable funding for research.  Through research more drugs, like crizotinib, can be developed and hopefully not just providing survivors like me suppression but real life sustaining remission.

So get involved and set yourself free by helping others fight and beat this horrible disease. We too can build an army of survivors.

Raise Awareness from your Couch!

keep-calm-and-take-action-14

November is Lung Cancer Awareness Month and this is the time of year when our community comes together in the most united way to make some noise for lung cancer! Most of the activities involve events of some kind, be it a Lung Love Walk or a Shine a Light on Lung Cancer. We encourage you to sign up for one in your community.

However, if events aren’t for you or you don’t have time to attend, you can still make a difference…from your couch. Literally!

  • Use Your Social Media to Educate Your Friends and Family – Facebook, Twitter, LinkedIn, Instagram are wonderful platforms to get messages out to the public. We have some sample Facebook and Twitter posts that you can use throughout the month or just share some of ours!
  • Send a Letter to Your Local Newspaper – Write a letter to the editor and submit it to your local newspaper. Newspapers love to receive feedback and insight from readers within the community. This platform gives you an opportunity to tell your story, share some vital statistics on lung cancer or highlight the fact that it is Lung Cancer Awareness month. Here is a template letter to get you started!
  • Join Our Community  – Stay connected to the lung cancer advocacy community by signing up for our Weekly Breather, an email newsletter. You will receive relevant news, insights and calls-to-action to guide efforts in your local community.
  • Go Shopping  – Thanks to our partners, you can now raise awareness in style! When you buy a lung cancer awareness item, a percentage of your purchase will go to helping us provide lung cancer patients and their families with free support, education and referral services. These are great gifts for loved ones or just treat yourself!
  • Help Us Help Others – Make a donation! Monetary support is the backbone of our advocacy efforts. Give what you can and invite three friends to do the same. You can donate by texting SHINE to 27722 or visit our website to donate online.

The bottom line, there are no hard and fast rules about getting the word out about lung cancer. No matter what method you choose, you are making a difference.

by Chris Davis, Media Relations Manager

Can We Talk? About Lung Cancer?

Our passionate advocate, Sheila Ross

by: Sheila Ross, 14 year survivor and advocate for Lung Cancer Alliance

A memorial showing of a 2010 documentary on Joan Rivers was aired by American Masters on September 23, nineteen days after her death.  During a sequence in which she is urging her daughter, Melissa, to stop smoking, Joan says: “I went to a pulmonary guy today…he said…more women are dying of lung cancer than breast cancer and nobody is discussing it…”

Not “nobody,” Joan. Some people are. More each year, but still not enough.  Why aren’t they?

Based on the National Cancer Institute’s most recently updated estimates, as of 1/1/11 there were about 2.9 million women then alive who had been diagnosed at some point in their lives with breast cancer. That’s 13 times more than the 219,000 women then alive who have been diagnosed at some point with lung cancer.

These 220,000 cannot do it alone. Many of them are too sick or depressed to even try.

About 160,000 people a year die of lung cancer -  70,000 of them women – nearly twice as many as breast cancer. So lung cancer has touched millions of families and friends. Why aren’t they speaking out?

Why doesn’t the 2.9 million strong breast cancer community show more empathy about the biggest cancer killer of women? Why didn’t Joan speak out when she learned the truth? She said it “scared the bejeezus out of me.” Us too.

This October, while pink overshadows the statistics and companies profit from “pinkness,” why don’t we in the lung cancer community try to get answers to those questions instead of just- as Joan would say – “b—ing.”

So, can we talk?

 

 

A Tale of Two Cancers

Pat and Mike Harrell

Pat and Mike Harrell

By: Pat Harrell, lung cancer advocate and breast cancer survivor

When my husband, Mike, retired from the Navy in 2005 after 22 years of service we figured we would settle into civilian life the way countless military families have done over the years.  Little did we know that cancer would impact our lives so soon after making this transition.

After a flu-like illness prompted several doctor visits, Mike was diagnosed with Stage IV lung cancer at the age of 46. A CT scan revealed the cancer had spread from his lungs to his brain. To add to an already difficult situation, a year later, I was diagnosed with breast cancer.

A happy couple and two cancer diagnoses. That’s where the similarities end.

Fortunately, my breast cancer was caught early and I had a mastectomy. The cancer had not spread to my lymph nodes and I did not have to undergo any chemotherapy treatments. They tell me that my cancer has a low risk of recurrence. The resources given to breast cancer survivors are unparalleled. I always felt like I knew where I could find support when I was dealing with my illness.

Mike’s journey was very different. As a non-smoker, he had to deal with the stigma that often comes with having lung cancer. During one of our first meetings with his oncologist, Mike was asked, “When did you quit smoking?” I was stunned. Even a cancer doctor assumed that his diagnosis was the result of years of smoking. My mother, a long-time smoker, also passed away from lung cancer in 2004 so I was familiar with the disease, but the tone of people who spoke to my husband led me to think that they faulted him for his diagnosis even though lung cancer can happen to anyone regardless of their smoking habits. 20 percent of people diagnosed are individuals who have never smoked.

Pat on Capitol Hill with LCA President & CEO for the 6th Annual Summit

Pat on Capitol Hill with LCA President & CEO for the 6th Annual Summit this September

Thankfully, early into his diagnosis when answers and support were in short supply, Mike heard about the Phone Buddy program with Lung Cancer Alliance. He was paired up with someone who had survived his initial diagnoses for over 5 years giving Mike hope that he, too, could fight this disease. He even wondered aloud if he could “be one of the 2% who survive.” After a period of time, Mike also became a Phone Buddy and began helping others while he was enduring his own treatments which included a full brain radiation treatment among many other physically demanding therapies.

Last March, Mike lost his battle with lung cancer after 5 years. I truly believe he gained a sense of purpose by being helped in those early days through the Phone Buddy program and later volunteering to call others dealing with lung cancer. Through my experience, I have recognized how critical hope is in the cancer journey. No matter what cancer a person has, everyone deserves hope and support.  I’m grateful for the last few years we had together and even more thankful that he ended up finding the support to deal with his own diagnosis.

I realize now that support is the great equalizer in any cancer fight. No matter the outcome, people benefit from having someone on their side. Thankfully, Mike and I both gained that even though we had different paths after our initial diagnoses. Inspired by his efforts, I have continued his commitment to the lung cancer community through advocacy work to make people, whether at home or in our nation’s capital, more aware of the needs of lung cancer patients.  More must be done, but we are definitely on the right track.

 

October is Book Month! Check Out Our Favorite Books!

Reading is a great way to relax, escape and find adventure (without exerting yourself too much). October is National Book Month and we asked the LCA staff what their favorite books are. Check out what they said!

 

 

 

 

 

Laurie Fenton Ambrose, President & CEO: The Great Game by Peter Hopkirk

 

 

 

 

 

Sheila Ross, Special Counsel: Miracle at Philadelphia by Catherine Drinker Bowen and Team of Rivals by Doris Kearns Goodwin

 

 

 

 

 

Emily Eyres, Chief Operating Officer: Catherine the Great: Portrait of a Woman by Robert K. Massie

 

 

 

 

 

Amy Copeland, Director of Medical Outreach: (Fiction) The Great Gatsby by F. Scott Fitzgerald, (Non-Fiction) The Immortal Life of Henrietta Lacks by Rebecca Skloot

 

 

 

 

 

Edy Whidden, Chief Administrative Officer: Exodus by Leon Uris

 

 

 

 

 

Tina Hone, Senior Advisor, Policy and Partnerships: The Drunkard’s Walk: How Randomness Rules Our Lives by Leonard Mlodinow and The No. 1 Ladies Detective Agency series by Alexander McCall Smith

 

 

 

 

 

Maureen Rigney, Director of Community and Support Services: To Kill a Mockingbird by Harper Lee

 

 

 

 

 

 

Tara Perloff, Support Services Manager: Half the Sky by Nicholas Kristof and Sheryl WuDunn

 

 

 

 

 

Gabby Geier, Communications Manager: The Giver by Lois Lowry

 

 

 

 

 

Chris Davis, Media Relations Manager: Song of Solomon by Toni Morrison

 

 

 

 

 

Lanni Boyd, Senior Manager of Events and Volunteers: Three Cups of Tea by Greg Mortenson and The Count of Monte Cristo by Alexandre Dumas

 

 

 

 

 

Kenny Palmer, Health Policy Coordinator: Poisonwood Bible by Barbara Kingsolver

 

 

 

 

 

Kristen McAvoy, Volunteers and Events Coordinator: The Lost Symbol by Dan Brown and It Happened on the Way to War by Rye Barcott

 

 

 

 

 

Rachel Bartolo, Development and Operations Assistant: To Kill a Mockingbird by Harper Lee

 

What is your favorite book? We want to know!

 

 

 

Chorus of Voices Grows Stronger and Louder

A Message on Lung Cancer Screening from LCA President & CEO, Laurie Fenton Ambrose

At this critical moment, the Centers for Medicare & Medicaid Services (CMS) are deliberating whether or not to offer full Medicare coverage for low dose CT screening those at high risk for lung cancer. In recent weeks, the chorus of support from the scientific, medical and consumer community has grown louder and clearer in support of full Medicare coverage for this lifesaving benefit.

Yesterday, we were joined by an unprecedented coalition of over 70 medical, professional and public health leaders on a letter to CMS that offered an approach to lung cancer screening that would assure that high quality screening for our at risk seniors would be deployed equitably and cost effectively.

This coalition letter comes on the heels of new peer reviewed research cost effectiveness studies that should finally put to rest the few remaining questions related to whether lung cancer screening for high risk seniors should be covered by Medicare:

  • Consumer Reports, for the first time ever, included lung cancer screening on its list of “recommended cancer tests.”  That list was reprinted in the Washington Post last week.  Not only did Consumer Reports recommend screening, but it also took the extra step of calling for Medicare coverage for lung cancer screening for the high risk USPSTF population.
  • The New York Times published an Op-Ed, co-authored by Dr. Andrea McKee, an expert on lung cancer screening and a member of our Medical Advisory Board, calling lung cancer screening “a significant victory…in the war against cancer.”
  • Questions about whether the profound life saving benefits of lung cancer screening applied to the Medicare population were put to rest in a peer reviewed article released in the prestigious Annals of Internal Medicine. That article specifically showed that the lifesaving findings from one of the NCI’s largest and most expensive clinical trials held true, even when applied only to the Medicare population;
  • The cost effectiveness of lung cancer screening specifically in the Medicare population was also carefully analyzed and proven in a peer reviewed study conducted by the international actuarial firm, Milliman, Inc., and published last month.

CMS should know they stand on firm ground in making their decision to support our at risk seniors. The range of voices now calling for full and equitable coverage of lung cancer screening by Medicare population is broad and diverse and included experts and advocates with proven commitments to science, data and most of all, saving lives. CMS should move forward with confidence and approve coverage for lung cancer screening without unnecessary delay.

 

A Front Row View of Lung Cancer Stigma

by Phil Trahan, Father and Lung Cancer Advocate in Louisiana

Much has been written, discussed and debated regarding the plight of people who, despite never having smoked, contract lung cancer.  Adding insult to injury, these diagnoses almost always occur at late stages, largely due to the atypical appearance of the patient.  And forgive me for piling on, but the worst is yet to come – research funding has been severely compromised because of the common perception that lung cancer is always self-inflicted by smoking.

I have a front row seat to this drama as my 34 year old son Andy works his way through Stage 4 non-small cell lung cancer.  A beautiful and supportive wife, three cute kids and an army of family, friends and strangers support Andy and keep his hope alive.  I try to do my part by researching and advocating for his cause.

Phil and Andy Trahan

Andy and Phil

Andy Trahan and Family 2014

Andy and his family before treatment in August

Recently that advocacy led me to the 6th Lung Cancer Survivors Summit sponsored by the Lung Cancer Alliance in Washington, D.C.  I must admit that I had a twinge (OK, maybe more than a twinge) of resentment as I learned that annual CT screening for smokers and former smokers aged 55-80 is the most immediate and achievable initiative of the LCA.  However, further education and awareness led me to see that early detection for those most at risk and ramped up research into the genetic origins of disease commonly found in kids like Andy are not mutually exclusive.

LCA staffer Kay Cofrancesco accompanied our group to Capitol Hill and more than a tear was shed as we relayed Andy’s story to lawmakers and their staffs.  Even more poignant was the first person story of one of our group members who also is Stage 4, also is a non-smoker, and also harbors the ALK gene mutation as Andy does.

A riveting statistic that frankly hits way too close to home for me is that, as a standalone disease, lung cancer in never smokers is the sixth leading killer of cancer patients in the United States.  I cannot help but imagine how much more robust Andy’s treatment options might be if his cancer was called “ALK Mutation” instead of “Lung Cancer.”  Indeed, the trend among professionals is toward identifying cancer based on its cause rather than its primary location.

Please allow me to throw diplomacy out the window as I close.  My son has received the shaft in that he has contracted a terribly lethal cancer.  And worse, the effort to help him has been brutally compromised by the common perception that he’s supposed to be twice his age and smoking.  By far the most promising research (and yes, gains) in lung cancer treatment, accomplished with severely limited funding, has been exactly in the area of genomics that is most helpful to Andy.  That far more has not been accomplished I will chalk up to an innocent misperception. But with the Lung Cancer Alliance as my partner, I’m starting the accountability clock right now.