LCFA mourns the passing of our co-founder Lori Monroe.

Sometimes the impact of a single life is far deeper than a whole lifetime. And sometimes a lifetime is too short. In the case of Lori Monroe, both are true. A tireless and selfless advocate for lung cancer patients – including herself – Lori’s imprint on all of us will not soon be forgotten.

Lorraine “Lori” Gail Monroe, 55, co-founder of Lung Cancer Foundation of America (LCFA) passed away November 30, 2013, at Vanderbilt Medical Center after a courageous 12-year battle with lung cancer.

The response to Lori’s death has been overwhelming. The love and support and passion that she inspired are incredible. We know she touched innumerable lives and we would love to hear more about Lori through you.

Lori’s Lung Cancer Story

Lori was diagnosed with Stage IV lung cancer in September, 2001, at age 42. Nobody suspected lung cancer because Lori had quit smoking at age 28. While the diagnosis was shocking and devastating, the prognosis was horrifying. Lori sought a second, third, and even a fourth opinion. Using her own medical knowledge and tenacity, Lori began to advocate for herself in a way that few lung cancer patients could. Her ability to speak the language of medicine was combined with her empathy for all patients. Not only did she push for her own treatment, but she recognized the importance of medical research in the development of new options for lung cancer patients.

In order to ensure the development of new therapies, Lori became involved as a pioneering patient advocate with the National Cancer Institute’s (NCI) Lung SPORE (Specialized Programs of Research Excellence) initiative at Vanderbilt University, Advocacy Steering Committee, Eastern Cooperative Oncology Group (ECOG), and Thoracic Malignancies Steering Committee; the United States Department of Defense’s Congressionally Directed Medical Research Programs’ Integration Panel; and the Lung Cancer Action Network (LungCAN).

Lori Monroe, Kim Norris and David Sturges Found LCFA

Lori developed an insider’s knowledge of the key institutions, projects, and personnel in the world of lung cancer research. She leveraged this knowledge, combined with her considerable Southern charm, to address the lack of funding for lung cancer research, along with the stigma endlessly encountered by lung cancer patients. Lori founded Lung Cancer Foundation of America with Kim Norris, a lung cancer widow, and David Sturges, another survivor, in 2007. LCFA’s mission is the dramatic improvement in survivorship of lung cancer patients through the funding of transformative science, with the ultimate goal of curing the disease.

Lori’s unique combination of smarts and charm is summed up by Paul Bunn, MD, Distinguished Professor, James Dudley Chair in Lung Cancer Research, University of Colorado:

“Physicians are not often comfortable communicating with patient advocates, but Lori was one who could break the barriers and set up communications that would actually get things done.”

Lori’s Lasting Legacy

A native of Fairmount, Indiana, Lori was born on October 28, 1958. She earned a nursing degree from Western Kentucky University and dedicated her life to serving others as a registered nurse. She enjoyed camping, traveling, and being in Colorado with her daughters. One of her dreams, upon diagnosis, was to see her daughters graduate from high school. Thanks to her tremendous will, Lori saw her daughters graduate from college and recently attended her youngest daughter’s wedding.

We will remember her always for her energy, her passion, and her commitment, but also for her incredible warmth, charm, and humor. She will continue to guide us with her wisdom, and we will work as diligently as she did to keep patients alive and healthy.

Sometimes the impact of a single life is far deeper than a whole lifetime.

Lori’s younger brother, Jeremy, shared this touching tribute with LCFA. We were all very moved by his words and we’d like to share them with you here:

Lori is gone now and she’s no longer suffering. For that much at least, we are grateful. She was my much older sister (14 years) and we really didn’t grow up together given the age difference. However, she was, by her very nature, someone I looked up to. I remember well our family houseboat trip in Kentucky with the entire family together on one giant houseboat in the middle of a lake. That was right before she found out she had Stage IV lung cancer. It’s the last memories I have of her as she was – cancer free and care free. Then we got the terrible news.

Almost overnight, Lori transformed into a warrior. Not someone who picks up a sword or a gun, but someone who picks up a telephone and doesn’t put it down again until she got the answers she wanted. Being a nurse, she actually understood the terms the doctors like to throw around that go right over the heads of most of us. She knew what they were telling her and she also know how to cut to the chase and push for what SHE wanted.

Birth of a Super Hero

She fought them on several points and pushed for the operations to remove the cancer ridden parts of her lungs. At times, this was at odds with what the doctors wanted as they were debating if that would actually do more harm than good. With Lori however, she had a goal in mind of being there to, at first – just see her daughters graduate and then later, to see them get married. Whatever it was going to take to get to those goals – that’s what she did. I remember being up at Vanderbilt when she had undergone one of the surgeries. I remember feeling completely helpless like there was virtually nothing at all I could do except just watch her lie there and fight for life. It was a sickening feeling. We wound up putting together a motorcycle charity ride to benefit Dr. Carbone’s research lab at Vandy. He and Lori came down to Cartersville, GA, and they both rode with us. Lori on the back of my bike and Dr. Carbone on a rented Harley. We didn’t get nearly the attendance we wanted and I found out later that we were competing against a breast cancer ride in the area on the same day. It’s never any contest as to who’s going to win that one is it?

Lori continued to battle. Not just for her life but for her job as well. The hospital she worked for (and was also insured by) tried to fire her twice – not quite coming out and saying, but obviously because – she was sick. Lori fought them on this as well and won her job back both times. It seemed her life had become just a series of continuing battles. This is where I began to realize that my sister – was really a super hero. Not in the cape and tights sense – but in the sense of a hero who was able to give hope and help save lives. A REAL, honest to goodness, hero.

General in the War on Lung Cancer

I was with her at lunch once when someone she didn’t know called her cell phone. The person had literally just walked out of the doctor’s office having been told they had LC and been referred to Lori as an advocate and someone who could tell them what to expect. It was obviously an emotional conversation and Lori stopped eating, got a very serious look on her face and tuned out the rest of the world, giving this stranger 100% of her undivided attention. I remember her calming voice and the way she spoke to the person. She offered them hope when hope was really all they were looking for. She stayed on the call till her food was cold and I was done eating and then wrapped up her food and took it home with her. This had become her life and she didn’t mind it at all. This all part of the war she was fighting. She was truly a General of the War on Lung Cancer and talking to the troops was just part of the job.

I’m going to miss my sister, but I’ve known this was coming for a long time now. I always knew in the back of my brain that this disease was going to take her life. I can tell you however, that I am exceptionally proud of what she did with her time she had left. A lot of people in her position would have said their goodbyes to the world and started checking things off their bucket list before being forced into hospice. Lori – well – she started contacting Senators, Governors, Congressmen, anyone in power who would listen. I wrote a letter to my own Governor at her bequest and got the petition we asked for. She co-founded this organization and pushed for dollars to be allocated for lung cancer research. I realized at some point that the sister I knew was already gone, replaced by this warrior who was in the fight of her life (and for her life). I was ok with that. I observed her efforts and became proud of what she was doing. She was not wasting her remaining time, but instead putting it to excellent use.

I don’t know that I would have the same courage and inner strength to fight like she fought these last 12 years.

 Lori’s Swan Song

Recently, Lori’s youngest daughter, Alyson got married. Lori was able to attend the wedding, albeit on oxygen and in a wheelchair. She wanted to absorb every minute of it and fought me when I tried to send her home and let us clean up the mess afterwards. She wound up staying right up to the end and was completely exhausted at the end of the night. I think she just wanted every memory of the event that she could cram into her head. Towards the end of the wedding, Emily rolled her mom out onto the dance floor and the two of them and Alyson danced and laughed while the rest of us fought back tears of joy and also sadness as we realized that seeing Aly off as a married woman was Lori’s swan song. I knew then she didn’t have much time left and it was hard to go home to Georgia knowing this, but I also knew she wasn’t going to give up without one last fight.

On the morning of November 30th, I got a call from one of Lori’s best friends that she was gone. Angie and I had been to California to represent our side of the family at a funeral for a cousin who had died from another form of cancer and had only gotten back that very morning. Lori had grown up with him and wanted badly to go, but sent me a note when I left that it was just impossible given her current state of health. We had talked briefly about my driving her out there, cross country as we knew she could no longer fly. In the end, she decided to stay but wanted us to go and send her condolences which we did. The last time I talked to her was on Thanksgiving Day from California. It was a very short, clipped conversation because she could barely breathe. I realized that conversations were very painful for her so I just told her that I would do the talking and she could just listen. I told her about the service for our cousin and that I wished I could be with her and give her a hug. I told her that I loved her and then we said our goodbyes.

Being Audacious and Courageous

Lori will be missed. There’s no doubt about that. However, it is our family’s hope that you and those you work with at the LCFA will carry on her spirit in the work you do there. Remember her courage and be audacious and be courageous with our leaders. She was never afraid or intimidated by much of anyone. She knew what she wanted and was not afraid to ask for it. Please continue on with your work with our family’s blessing and know that this was what Lori wanted. Thank you for being her friends and supporting her efforts.

Jeremy Whitehead
Proud brother of Lori Monroe

LCFA has carried on Lori’s fight and we will continue to raise awareness and fund research until Lori’s ultimate goal has been realized – a cure for this devastating disease.