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LaurenH

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Blog Entries posted by LaurenH

  1. LaurenH
    Facing a lung cancer diagnosis changes a person’s perspective about what matters in life and what doesn’t. Being diagnosed with cancer makes you put absolutely everything else to the side, or totally out of mind.  You have the chance to let back in only the things that really matter back into your conscious mind. If you can do that, and spend more time focusing on things that really matter in the present moment, you will have completely changed and improved your mind and your life. I still get caught up in feeling anxious or scared about what might happen in the future and the negative impact it could have on my family, especially my wife and daughters. What’s helped me has been to realize that they are thoughts – they don’t have a physical presence anywhere and if you observe them but don’t chase after them, they go away.
    If I could give advice to someone newly diagnosed, I’d probably want to say a few things.
    1.       Slow down. Information is going to be coming at you really fast and it can be overwhelming, especially with the internet making everything move at hyper speed.  Take your time to digest what’s out there in terms of treatment options, support systems, heavy medical information, etc.
    2.       Get yourself into a respected cancer center as soon as possible. Find an oncologist that you trust and have a good relationship with, and then TRUST that doctor.
    3.       Take everything, except what your oncologist tells you to your face, with a grain of salt.  There is a ton of real, semi-bogus and totally bogus information out there about magical cures and treatments.  Ask your doctor about all of them but, in the end, do what he or she advises.
    4.       Take a step back, look at the road ahead as objectively as you can and try to be practical.  It is the “C” word but, after all, it’s an illness not a curse or a death sentence.  Come up with a treatment plan together with your doctor, follow that plan and do what you need to do in order to stay healthy
    5.       Don’t give cancer more power than it already has by thinking you can’t face it and just giving up.  You can face it.  Maybe not today, or all the time, but eventually and most of the time you can.
    Lung cancer is just the same as any other kind of cancer. It will take the people you love just as heartlessly as any other form of the disease.    It’s really good at taking people away; men and women, smokers and non-smokers, old and young, any race and origin.  In fact, it’s better at that than most other cancers.  We could all get cancer, and none of us would deserve it.  We should fight it with research funding, trials, promoting new and existing treatments, by helping people pay for treatment, and everything else at our disposal. Not giving lung cancer the fight it deserves leaves us all that much more powerless to stop it from taking away someone we love.

  2. LaurenH
    My story begins in May of 2013. I am a high school special education teacher and for weeks I had a nagging but dry cough, I wasn't worried about it at all as I was running 3 miles a day, just completed a 5k road race and was very rarely sick. I finally saw my primary care physician who put me on a Z-pack and I went back to my normal life. A few weeks later since the cough had not gone away, I went back to my doctor who gave me a prescription chest x-ray, which I immediately threw on the passenger side of my car and forgot about it. Fast forward 2 weeks later, on a whim I was passing by the x-ray facility and decided to run in and get and a chest x-ray. The next day my doctor called and said he saw something on my lungs that he didn't like and was pretty sure it was cancer. A few days later a bronchoscope was done, and as I was waking up from it I heard a doctor use the word malignant and I knew he was talking about me! Never have I been so scared, I actually made them show me the name of the person on the results, thinking this is a mistake. Non-smoker, 58 year old healthy individual, never gave a thought to lung cancer. It is now 2019 and I have seen targeted therapy, chemo therapy, have had 2 surgeries. I have been on immunotherapy for 2 1/2 years, which has kept me stable. I think maybe the key to success is exercising religiously and making the body stronger for each day that follows. With exercise comes a strong mental attitude… two winning combinations!
  3. LaurenH
    In 2013 started with pneumonia but wasn't getting over it, Dr. wouldn't give up something just not right he kept saying. Sent me to a pulmonary specialist who found a spot on my right lung. Immediately set up oncologist, surgeon & hospital within 7 days I was laying in the recovery room with minus -one lung. Come through with flying colors, home within 3 days, thought to myself piece of cake! Yeah wrong answer, started chemo 3 weeks later and within 24 hrs I was back in hospital dehydrated & sicker than a dog! Not going to sugarcoat it the next 4 months was hell! After that I refused radiation, oncologist wasn't happy, I didn't care. As of October 20 it has been 5 years & I was stage III B so don't believe the statistics, just never give up! and fight!
  4. LaurenH
    I learned about my lung cancer in a roundabout way in the summer of 2017. I started having headaches and experiencing vertigo. I also noticed some slurred speech and trouble with fine motor skills like writing. I went to a series of doctors to try to determine the cause, including my PCP, an ophthalmologist, a massage therapist, and an ENT. Eventually, a neurologist ordered an MRI. I went in for the MRI and afterward the radiologist wanted to see me to “look at something.” From then on, it was like a cascade, with lots of people coming in and out of the room conducting various procedures and making calls to my wife. I ended up getting the news from the attending ER physician and several interns or residents. They still had to do a biopsy to be sure, but based on the MRI and chest CT scans, they were pretty sure it was lung cancer.
    I don’t remember being floored by the news and I didn’t collapse or anything. Maybe I was numb to it but in the moment, it seemed obvious like, “Of course that’s what it is!” I actually felt bad for the residents and interns who had to tell me.  It was like they were training on how to tell someone they have cancer. My wife, Judy, and my sister-in-law, Mary, who is an RN, arrived and I was grateful to have them there for support. Two days later, I underwent surgery to remove the largest brain tumor. They did a biopsy using that tissue, which confirmed my diagnosis: stage IV adenocarcinoma.
    Judy and Mary made appointments for me with a thoracic oncologist and a neurological oncologist at Memorial Sloan-Kettering. Initially, the plan was for me to start chemotherapy and radiation. My oncologist also ordered the MSK-IMPACT genetic test panel to identify any treatable mutations. The day before I was to start chemotherapy, my thoracic oncologist called to tell me that the test came back EGFR positive and I didn’t need to go through with chemo. She told me that I was a candidate to take Osimertinib, a targeted therapy drug. I still had to do five rounds of radio-surgery as well, but the treatment options changed completely. There was no question about whether I was going to take that or not.
    One of the biggest challenges was recovering from surgery and getting back to work.  That wasn’t easy, but the support from my family, friends, and employer has been tremendous.  I have the good fortune to work for a company that puts people first, and they have been very accommodating.  From the beginning, my large family started coming to visit and help with things like cleaning our house and delivering meals.
    I’ve been a pretty avid runner for several years.  Before I was diagnosed, I ran 8 ultra-marathons, 7 full marathons, 10 half marathons, and a bunch of shorter races. Getting back into running regularly took a back seat to recovering from my surgery and the initial rounds of radiation. I was able to start running pretty regularly about 2 months after diagnosis. So far this year, I’ve run some 5Ks and trail races, three half marathons, one full marathon, and one 50K ultramarathon. The marathon, especially, was a big milestone for me.  I ran the New Jersey Marathon, which I had finished three times before cancer. Being able to run it again after my diagnosis was a really uplifting and fulfilling experience for me. I’ve been fundraising for Fred’s Team, the running charity for Memorial Sloan-Kettering Cancer Center.
    Since my diagnosis, I’ve done a lot of research and made a lot of connections online, both of which have helped me understand and deal with cancer better.  LUNGevity’s Facebook groups have opened up a large network of people who are more than happy to provide support and information, answer questions, and share their experiences.
    I think in the past, and to some extent still today, most people only considered a ”survivor” to be someone who had been diagnosed with cancer, underwent treatment, and was in remission or totally cancer-free. That definition leaves a lot of people out, myself included, who are on long-term treatment.  To me, a “survivor” is anyone who has been diagnosed with cancer and is still alive.  Some of us may never be totally cured but we could survive for a long time thanks to new treatments liked targeted therapies.  Hopefully, we’ll survive cancer long enough to live a full life and eventually die of something else, like a skydiving accident at the age of 97!
     

  5. LaurenH
    I was diagnosed with Stage IV lung cancer in September 2014. Like many people, my diagnosis came as a huge surprise to me and my family. A friend told us about the Breathe Deep Kansas City Walk that was happening in our area. We called our team The Village People because we like to say, “It takes a village” to fight this thing. The Breathe Deep walks provide an opportunity to raise awareness and money in your own community. It’s very powerful.
    I attended my first National HOPE Summit in Washington, D.C. in 2015. Lung cancer is so isolating and overwhelming. Then you get there and meet other survivors and caregivers and experts. I feel like I always leave HOPE Summit with 150 new friends and then I don’t feel so lonely when I get home.
    The next year my wife and I attended the 2016 Hope Summit together, she finally understood how these friends I had been talking about for the last year could be so intertwined with my health and healing.  We made even more friends and keep in touch all year long through social media and other events around the country.
    Once you get to HOPE Summit, it’s so empowering that you want to get involved. I found out about the LifeLine Support Partner program at HOPE Summit. LifeLine is nice because you can work remotely and there’s an opportunity to give back. My mentor, Matt Ellefson, is one of those people who LF relies on to have multiple mentees and he was very inspirational for me because of our similarities and what we’ve been through. It was a very good fit.
    LUNGevity tries to match people based on age, gender, diagnosis and geographic location. It’s always felt very comfortable. I’ve had mentees assigned to me and we usually have a really good talk and maybe hear from them once or twice and that’s all they need at that time. We talk on an as needed basis. Hopefully, I’m encouraging people depending on where they are. A lot of the time, the person is newly diagnosed and it’s very fresh with them. As a mentor, you have to put yourself back in that frame of mind. It’s important to remember that you’re not there to fix their situation. You’re there to listen to what they need and let the conversation evolve.
    The most rewarding thing about being a volunteer is being able to help someone else by sharing my experiences and the ups and downs that I’ve had. If I give any advice it’s always to find a specialist who is an expert when it comes to your diagnosis type or mutation. It’s so important to be very confident in your medical team. Don’t be afraid to get a second opinion. If your doctor isn’t jiving with you, keep looking. It just feels good to help somebody through this because as we all say, it’s really hard for other people who haven’t gone through it to understand.
    When I was diagnosed, I was given 9-18 months. I’m coming up on 3 years and 11 months and my wife and I are going out to Los Angeles next month for the Stand Up for Cancer telecast on my 4th Cancerversary. I hope that my efforts as a LifeLine volunteer will inspire the people I mentor to do the same for others. I’m a big believer in paying it forward. It’s a big world and there are a lot of people affected by this disease.
     

  6. LaurenH
    My lung cancer diagnosis came as quite a shock to my family, my doctors, and me as I’ve always maintained a healthy lifestyle. I exercised regularly, ate healthily, never smoked, and enjoyed a variety of outdoor sports and other activities with my husband and our three children. I worked as a learning specialist for children ages K-8 and loved my job. Everyone I was close to commented that I was “the healthiest person they know.”
    But in March 2011, after worsening back pain, I visited my physiatrist who ordered an MRI. I figured I had a disc issue with my back or created an injury from too much sitting during work. When I saw my doctor for the results, she was speechless; she told me my upper body was "riddled with lesions." I said there must be some mistake, that the scan was someone else’s.  As the doctor insisted there was no mix-up and this was truly me, I felt as if the floor had given way under me, a feeling that never seemed to fade from my day-to-day experience.
    I was 54 years old. A few days later, I was diagnosed with Stage 4 non-small cell lung cancer. Since I was an otherwise healthy, active, never-smoker, the doctors at Memorial Sloan Kettering Cancer Center predicted I would have the EGFR mutation, and the biopsy results proved they were right. The targeted therapy, Tarceva, shrunk my tumors, and with tolerable side effects, allowed me to continue leading a relatively normal life. I even took up sculling, a sport that I had always aspired to learn.
    However, I was disappointed when only after 9 months my cancer figured out a “way around” the Tarceva, which is expected for targeted therapies (referred to as acquired resistance). Thus, began my participation in a series of clinical trials and chemotherapy, all with mixed results and, at times, difficult side effects, which forced me to retire from my work which I truly loved and still miss a lot.
    One bright period during these trials was a 14-month durable response from a trial combining Tarceva and the immunotherapy drug called Nivolumab, also known as Opdivo.  Unfortunately, after 14 months I had to be quickly removed from this trial due to adrenal failure and colitis.  In addition, I have been taking blood thinners since the diagnosis because of a DVT that was found at that time, and a couple of years ago I had a brain tumor surgically removed. My latest battle is with Leptomeningeal Disease, against which I hope to beat the odds once again.
    Throughout my treatment, I’ve taken advantage of different integrative health services to help manage symptoms and side effects, such as acupuncture, counseling, support groups, and meditation. I can’t say these endeavors were always helpful, but it was important for me to try to find alternate ways to manage symptoms, both physical and emotional.  However, over time my stamina began to wane, and my sense of self efficacy began to diminish. It became increasingly frustrating not to be able to do the things I always enjoyed. The treatments and their side effects can wear you down.
    Initially, I struggled to find camaraderie with other survivors who have the same mutation as mine. Social media has been particularly helpful, especially in the beginning when I was trying to learn about different treatments and find a community. LUNGevity, Cancer Grace, and Inspire, and Lung Care Alliance were all useful sources of information and support.
    My husband has been a great support and care giver. Initially, he dug into the research to learn what treatments were in development, so we knew what was in the pipeline. Moreover, my children have also been there for me. Even though they’ve grown up and don’t live at home anymore, they still come to visit me as often as they can. It has been difficult for me to accept not being able to participate in their activities and lives the way I was able to when I was healthy. It has been a continuing effort for me to feel “a part of the game.”
    If I could share my experience with someone newly diagnosed, I would recommend getting as much information as you can from credible sources and not being afraid to get second opinions. It’s best to be treated at a major cancer center even if it means traveling because the research experience, depth of knowledge, and specialists they provide are cutting-edge. I would also recommend participating in clinical trials if they’re an option, as well as trying to find people to connect with who are going through similar situations.
    Since my diagnosis, life has been a roller-coaster ride of living with uncertainty and trying to function amidst toxic side effects. I try to appreciate the good days and keep active. This spring will be my seventh-year anniversary living with Stage IV lung cancer. I am grateful for those who are raising awareness of lung cancer as a growing epidemic in non-smoking women and am excited to share my story to help other patients. I am especially interested in helping to erase the stigma that lung cancer is only a smoker’s disease, and hopefully increase research funding to the level it should be.


  7. LaurenH
    For the past 11 years, I’ve helped treat lung cancer patients as an RN in a cardiothoracic practice. Then last October, I developed a bad cough that lasted over a month. It was cold season, and my co-workers and I thought it might be pneumonia or even bronchitis. No one suspected it could be lung cancer, since I’m a nonsmoker and haven’t been exposed to common risk factors like asbestos, radon, or pollution.
    I had a chest ray taken, which showed fluid around my right lung. The tests of the fluid didn’t uncover anything extraordinary. I didn’t look sick, but I felt fatigued and at times, I had difficulty breathing. A few days later, I had a CT scan, which supported the pneumonia diagnosis, but it also showed a thickening on my chest wall.
    The doctors drained the fluid and tested it twice. Both times, the results came back negative for cancer cells. This didn’t completely rule out the possibility, but it gave us reasons to be hopeful. I started taking antibiotics and steroids, which were prescribed by a pulmonologist. But the second CT scan did not show any improvement.
    My first surgery was scheduled for late January. The doctors thought I had an infection and that they’d be able to clean it out. But during surgery, they discovered growths in my lung that had expanded into my chest wall. The hospital lab confirmed that it was lung cancer.
    My boss, cardiothoracic surgeon Carmine Frumiento, and my colleague, Danielle George, a longtime friend and physician assistant who I work with every day, had to give me, my husband, and my family the heartbreaking news that I have advanced lung cancer. It sounded so surreal that at first, I thought I was dreaming. I have a 6-year old daughter and a 2-year old son.
    All of the sudden, I went from being a care provider to being a patient. I had the surgery, and then later that week, I traveled to Massachusetts General Hospital to meet with some of the best specialists in the country. Danielle traveled to Boston with me and my husband, Chris. Before we left, Danielle and Dr. Frumiento helped us prepare a list of questions to ask the doctors at Mass. General.
    The doctors at MGH recommended starting a new targeted therapy without chemo or radiation. The results have been very promising on patients with my genetic mutation. But since the medication is so new, my insurance would not pay for it unless I tried an older treatment first. In order for her insurance to approve the new treatment, I would have to progress on the old treatment, or suffer from intolerable side effects. It felt like I was on an emotional roller-coaster. Fortunately, my colleagues helped me appeal the insurance company’s decision, and we won.
    I still work as a nurse, but I’ve cut down to just mornings, since I get very tired by the afternoon. I’m very grateful for the support of my work friends, who have become like extended family. They’ve helped to make sure I’m getting the best care. I realize that not all patients have those strong connections, and how important it is to advocate for yourself.
    I’ve been fortunate to have incredible support from my family, friends, and community. They’ve helped with everything from meals to child care to raising funds to help pay for my medical expenses. And my family was selected as the beneficiary of the Celebration of Courage Co-ed Hockey Tournament earlier this month. My husband has played in the tournament for many years to help support and raise funds for families affected by cancer. Now, our family is affected by cancer.
    It is likely that my cancer will never go away, but I have been told that the genetic mutation cannot be passed down to my children. The goal is to turn my cancer into a manageable chronic disease that I can live with until better treatments are available.
    I hope my story will raise awareness that lung cancer can happen to anyone, even young nonsmokers. It’s a fact I never fully realized myself, until I was diagnosed. There is so much blame and stigma surrounding lung cancer. I want to help raise awareness about the resources that are available for anyone who is diagnosed.
     

  8. LaurenH
    “I’m sorry, sweetheart these are tumors in your lungs and a form of lung cancer”.
    These were the words spoken to a vibrant, healthy 36-year-old female on October 19, 2017, by the thoracic surgeon. I knew that things were probably not good when he came in and asked if I was alone. Unfortunately, I was alone. Looking back, that day seems like a blur. I remember the ladies at the checkout desk asking how I was doing as they ask so many patients all day long. It’s mere customer service, right? I never made eye contact and mustered enough energy to say the word “fine”. I was far from fine, but I just wanted to get out of there.
    I never cried in the doctor’s office that day, but walking down that winding hallway and through the parking lot felt like I was carrying cinder blocks for shoes around my feet. The minute I got in my car and closed the door was the moment that I completely lost myself. I have cancer. I am going to die. My parents are going to have to bury their only child. My world felt like it had crashed.
    The days and weeks ahead were just amazing considering my new circumstances. People loved on me like I had never been loved on before. I received cards and texts and all sorts of support, but a part of me wanted to tell them that I was still the same person and I appreciated the cards of support, but that I wasn’t dead yet. Please hold the flowers too.
    My lung cancer diagnosis was a complete shock as it is to so many. However, I was asymptomatic and cancer was the last thing on my brain. I was hospitalized for a Bartholin Cyst. I had my yearly exam already scheduled with my OB/GYN and this exam was far from routine. I explained to the nurse that I was in pain and was running temperatures between 101-103⁰. I visited the local emergency room twice to attempt to acquire some relief and was incorrectly diagnosed. My OB/GYN admitted me to get antibiotics started quickly and mentioned a minor surgery, but before I went to the hospital, he wanted me to have a CT of my abdomen to identify the cyst prior to any procedure.
    Thankfully, the tech caught just the lower portion of my lungs on that scan and the radiologist noted lung nodules.  When I went back to my OB/GYN for my check up, he mentioned the lung nodules and ordered a full chest scan. He informed me that people had benign nodules and they could be there from my severe infection, but that he wanted to just make sure that it wasn’t anything.
    The next day he called me to inform that the nodules were still there and he would like for me to see a Pulmonary Specialist.  I agreed and the Pulmonary Specialist was very concerned about the number of nodules in my lungs which were over 100 scattered across both lungs. He conducted a bronchoscope and a needle biopsy for which both were non-diagnostic and I was then punted to the Thoracic Surgeon. The Thoracic Surgeon removed three wedge sections and sent the pathology off to Mayo Clinic in Arizona.
    After further molecular testing, my oncologist educated me on the different mutations and the path of treatment that would be taken for each of them. It was determined that I was Stage IV due to both lungs being involved and was positive for T790M. I began Tagrisso as a first line on November 11, 2017. After 6 months on this drug, my last scans read “barely perceptible”. I will keep taking Tagrisso until resistance occurs and hopefully there will be another inhibitor to take its place.
    When I was first diagnosed, I would literally wake up in the night in a panic. I couldn’t sleep, eat or function normally. I started browsing the internet for support groups and pages as well as social media. I found the LUNGevity private patient groups on Facebook and asked to be added to every single one of them. I began telling my story and people started responding to me and sharing their stories. Strangers were sending me encouraging private messages. I saw people living and thriving with an incurable, life-shortening disease. I found hope. I started sleeping and not crying so much. Finding those support groups really made the initial journey a bit easier.  Although we were strangers, we were brought together by a common bond. I’ve since been able to meet some of those people in person through the HOPE Summit and my “family” has grown by leaps and bounds. I would have never met these incredible people without lung cancer.
    Receiving a lung cancer diagnosis is not something any of us would have willingly signed up for, but I am thankful that I was able to find out before it spread all over my body and treatment options were expunged. I am also thankful for the perspective shift. I now know what it means to live each day with intent. The days of merely existing are over. It’s time to live and love life to the fullest because I now understand the value of each day that I am given.
     
     
     

  9. LaurenH
    Becoming Empowered Advocates
    My wife, Heather, told me about LUNGevity National HOPE Summit and that she wanted to attend. She received a Travel Grant from LUNGevity and I decided to join her at the conference. It is one of the best things we ever did. The wealth of information about lung cancer available through LUNGevity is not comparable to anything I could find in Canada or through any Canadian organizations. LUNGevity is so caring, thoughtful, and cutting edge.
    Heather and I attended our first National HOPE Summit in 2016. It was so incredibly inspiring. We got to see first-hand that the statistics are just numbers, not individual expiry dates. The number of people in attendence was impressive and the conference was well organized. We met people from across North America who embodied hope and positivity. It felt like a family. The medical professionals at this event were amazing. They spoke with my wife and gave her their contact information if they could ever assist her in any way in the future. After that experience, I felt empowered to become an advocate and to get involved with awareness events with my wife in our home province of New Brunswick.
    I followed LUNGevity on Twitter and I joined the LUNGevity Caregivers group on Facebook. I started participating in a few of LUNGevity’s LC Caregiver Twitter chats, which are held the first Wednesday of every month. I utilized the #stopthestigma hashtag on Twitter whenever possible. I volunteered to be a LifeLine Support Mentor to provide peer-to-peer support to other caregivers, and I joined LUNGevity’s Social Media Ambassadors to help raise awareness online.
    My goal is to raise awareness of lung cancer as the number one cancer killer, taking more lives annually than breast, colorectal, and prostate cancers combined, while receiving the least amount of federal funding for research. I hope that my advocacy efforts will help other caregivers through sharing my experience, strength, and hope.
    Whenever I can, I join my wife in her advocacy work. It is important to us to stay educated on new treatments, research, and changes within the lung cancer community. We continuously meet with Federal and Provincial politicians to educate them about lung cancer, to lobby for equal access to health care, to promote genetic testing, and to demand equal catastrophic drug coverage in Canada.
    Heather lends her name and story to different publications to spread the word about lung cancer. Through social media, she has connected with doctors and research scientists across Canada to support their requests for research funding. The most recent was through a connection with a very passionate doctor at the Dalhousie University Research Foundation.
    I hope to help educate the greater public that if you have lungs, you can get lung cancer. It’s not “just” a smoker’s disease and smoking is listed as a possible cause for all cancers. Lung cancer patients do not deserve this disease. I plan to continue to volunteer at events in my area to help raise funds for research and to promote the work and resources available through LUNGevity. And Heather and I look forward to attending National HOPE Summit together this spring.

  10. LaurenH
    My Dad was always my Ironman when I was growing up. In 2004, my dad had a persistent cough. He went to the doctor a few times and was finally diagnosed with pneumonia. A year went by and the cough went away for awhile. When it returned, my dad went back to the doctor. He was diagnosed with Stage IV lung cancer. I was 17 at the time.
    After he was diagnosed, my Dad signed up for Heather Saler’s Lung Cancer Walk in Pennsauken, NJ, which eventually became Breathe Deep South Jersey.  My dad didn’t do the full walk, but he was part of the survivor ceremony. I went with him and that was how we found out about LUNGevity and decided to start fundraising.
    My dad passed away in 2006, less than a year after he was diagnosed, but he taught me so much during that time. I saw how strong he was during his battle. He never gave up and gave it everything he had.
    My dad was a photographer. When he passed away in February 2006, my girlfriend (who is now my wife) and I put together a show with all of his photos at a local restaurant. People could come just to see the photos or they could buy them to help raise funds for LUNGevity. The second year, people who were impacted by cancer, either themselves or a loved one, donated artwork for the show.
    My dad was also a runner. He ran several marathons. I ran my first marathon, the New York City Marathon, in 2016. I wanted to strive for something more challenging so I decided to do the Ironman Lake Placid for Team LUNGevity. Lake Placid is the longest running Ironman event in North America and this is 20th Anniversary year, so it will be a great event. It consists of a 2.4 mile swim, a 112 mile bike ride, and a 26.2 mile run.
    Doing an Ironman is going to be the toughest thing I ever attempt. I wake up at 4:30 or 5:00 a.m. and either swim, bike, or run for about an hour, then go to work, come home, and train again in the evening. I’ll be training for about seven months total. I’ll be posting my Ironman journey throughout my training all year long on Facebook. I’ll also post stories of my Dad and news from LUNGevity. And hopefully when I finish that Ironman, I will be wearing something LUNGevity.
    If anything is going to inspire me to complete this Ironman, it is my Dad. The least I can do is try to raise money for lung cancer research in his name. Every dollar counts and every life matters. I hope that my fundraising efforts will make a difference in the fight against lung cancer. Maybe it is the dollar that helps find the cure, maybe it helps give someone affected by this disease sometime of motivation or maybe it just makes people more aware of lung cancer.


  11. LaurenH
    My wife, Heather’s lung cancer was discovered by accident. She was having an abdominal CT scan when the doctor noticed a small shadow on her lower right lobe. She subsequently had a chest CT scan. The Thoracic surgeon felt it was pneumonia scar but it was too small for a needle biopsy so he ordered a PET scan.
    We went for the PET scan and the radiologist who did the scan also read it and told her immediately that she did not have cancer. (It was not until a couple of years later that I actually read the report which indicated that there had been mild FDG uptake in the upper left quadrant of this spot.) She started having follow-up CT scans every 6 months. On one scan, the report came back that the spot had diminished in size. We were excited because cancer doesn’t shrink but unfortunately not informed enough to know that positioning during the scan can make a difference. She was then moved to an annual CT scan.
    Heather had her annual scan in July 2012 and we went to her parent’s cottage at the beach for a couple of weeks. When we returned home there a message on our machine to call the Thoracic surgeon’s office for her appointment. This was a new surgeon as the previous one had retired. She called the office and the receptionist said she was booking her for an appointment to see the surgeon because of the growth in her lung. The receptionist assumed that our family physician had informed us. I immediately called our family physician who was doing rounds in the hospital and asked him what was going on. He didn’t realize that the appointment would be set up so quickly and apologized and we made arrangements to meet at his office. We are fortunate to have such a wonderful family physician who we used as the center for all future appointments and advice.
    Heather underwent a wedge resection on Labour Day weekend 2012 to remove her tumor.  The tumor tested positive for NSCLC Adenocarcinoma and was scheduled for a lobectomy to remove the bottom lobe of her right lung. This operation was performed on the Canadian Thanksgiving weekend in October, along with a wedge resection of a nodule in her middle lobe and Lymph node sampling from the mediastinum and hilar. She was Stage 3a T2N2M0 with metastasis in three different lymph node stations. All her lymph nodes also had vascular involvement. Her oncologist patted her knee and told her that she had a 15% probability of surviving 5 years.  On New Year’s Eve, ending 2012,  Heather began  4 rounds of chemo, Cisplatin and Navelbine followed by 25 radiation treatments.
    This has been a journey with many ups and downs with a few scares along the way but she is currently stable and enjoying life.
     

  12. LaurenH
    I was diagnosed with Stage IV Lung Cancer on September 19, 2016. The doctor told us that it was inoperable and radiation was not an option. It felt as though I’d been punched in the stomach. I immediately began thinking of my children and my wife, Lisa, and that my time here on Earth was very limited. I had no words that day, only utter despair.
    As the initial shock wore off, and the option of getting selected for a trial medication was offered, I realized that I may have a chance at fighting cancer and not letting cancer "fight" me. I’m ALK positive, so I was able to start taking a targeted therapy drug. It was shortly after the diagnosis and when I had no choice but to accept this as my fate, that I made the decision to fight this disease by becoming proactive in my care. I have always been a man of strong faith, and God has not failed me yet. Sometimes it takes something so big to appreciate waking up each day to your family and the people you love!  I pray to God every night to give me another day.
    I was looking for an organization that focused on spreading awareness about lung cancer and funding research. I also liked that LUNGevity provided so many different types of support. We created a team for Breathe Deep Boca Raton, a 5K walk and run that raised lung cancer awareness and funds for LUNGevity for research and support programs.
    My wife and I are very active in our community, so we started reaching out to people to encourage them to come out and support the event. We advertised in local restaurants and reached out to local schools and youth recreation programs, and got some things going. My kids and I used social media to spread the word and I followed up with phone calls to remind people to show up. A friend of mine is in a band, so we asked them to come out and play live music at the event. Parts of the event are more somber, when we’re honoring the people we’ve lost to this disease, but other parts are uplifting and hopeful when we talk about research and the progress being made.
    I think the impact in the community is two-fold. First, it helps to raise awareness about lung cancer. I felt so strongly about making sure people realize that lung cancer isn’t only for smoker. And it also brings awareness about LUNGevity and that this a specific organization to help people impacted by lung cancer. I’m grateful for the research and medication and for the support of my family, friends, and the community.
    I hope the fundraising goes toward research to help find more targeted therapies. We need to fund research for treatment options that increase survival rates and help contain and manage the disease. I’m ALK positive, and there are treatments for that specific mutation, but I’d like them to find treatments for other mutations as well.
    I still look at the glass half full, because today, I am still here. My loving wife and children stand with me every day in this long, tedious, sometimes unbearable cancer journey. Through my positive energy and prayers we stay strong, and in September 2017, we celebrated my one-year cancerversary!
     
     

  13. LaurenH
    I first became involved with LUNGevity through National HOPE Summit, a survivorship conference in Washington, D.C. Seeing so many survivors and being able to share our stories and gain knowledge made the experience very special. I’m always impressed by the quality of what I learn and what is shared. The fact that the medical researchers can interact with patients in an intimate setting and participate in the roundtable discussions is very inspiring.
    Going to HOPE Summit has been a springboard for many other volunteer and advocacy opportunities. At my first conference, I learned about the LifeLine peer-to-peer support program. As a long-term survivor, I wanted to use my story to try to inspire hope in others who were living with lung cancer, so I jumped at the chance to give back as a mentor.
    Through HOPE Summit, I also got to know Andrea Ferris, LUNGevity’s President, and Katie Brown, LUNGevity’s Vice President of Support & Survivorship. Katie recommended me as a reviewer for the Department of Defense research grant program and I love being part of that. LUNGevity also connected me with Eli Lilly & Co. who produced an Emmy-winning documentary about my family and me. I've attended a congressional luncheon on Capitol Hill with LUNGevity, and a lab tour at Lilly.
    I was looking for ways to give back in my local community, so a few years ago I started a support group in Fort Myers, Florida. The group provides wonderful camaraderie and community. We meet once a month to share stories and experiences and resources, and we also get together socially once a month. We’re a close-knit group.
    In 2017, I convinced four members of my lung cancer support group to attend National HOPE Summit with me. We were so inspired that we decided to organize a Breathe Deep event in Fort Myers to raise awareness about the facts of lung cancer. We were able to share our story in local media and even surpassed our fundraising goal. We held the 5K walk and fun run on November 4 to kick off Lung Cancer Awareness Month.
    Breathe Deep Fort Myers brings attention to lung cancer and the lack of funding and gives us the opportunity to get rid of the stigma. We want to let the people in our area know that you don’t have to smoke to get lung cancer, that two out of three of the people diagnosed are never-smokers or quit many years ago.
    Being an event coordinator gives me such a feeling of purpose. I’ve been so aimless since I retired from teaching because of my health. Helping others through this event and through the support group is very rewarding. Our number one goal is to provide much needed research funding. We also want to raise money for patient education and support, and help continue to bring top-notch speakers to HOPE Summits. I hope that both the walk and the support group continue to grow and make an impact in the community.
    LUNGevity is so patient-oriented and offers so much support and information and education that it aligns with my goals. I want to give back to LUNGevity because I feel like they’ve given a lot to all of us. That makes me want to do as much as I can to help support LUNGevity’s mission to improve quality of life and survivorship.
     

    Melissa (bottom right) with members of the Fort Myers Lung Cancer Support Group and their families at the 2017 National HOPE Summit.
  14. LaurenH
    October 30, 2015 will forever be the day my world changed. That day I heard those words that no person wants to hear: “You have cancer.”
    I kept questioning how this could happen to me. I was a healthy, 35 year old nonsmoker, and a mom of two great children. I came to learn that you don’t have to be a smoker to get lung cancer. Honestly even if one was a smoker, would it matter? No one should have to go through this terrible journey.
    Soon after my diagnosis I saw a surgeon and was told that I was not a candidate for surgery, as my cancer had metastasized to the surrounding lymph nodes. Instead of surgery, I was scheduled for 35 sessions of radiation and two rounds of chemo infusion, believing that if the treatment was effective that surgery could be an option to remove the remaining cancer. After my initial chemo and radiation was complete the tumor in my lung had shrunk considerably and lymph nodes appeared to be clear of cancer. Good news, right? Unfortunately, new scans showed that what had been an inconclusive spot on my liver had now grown into a tumor, and my official diagnosis was changed from stage 3b to stage 4. The new tumor meant surgical treatment was no longer an option, and that medicine is my only hope.
    At that time my husband and I realized it was time to get a second opinion, which turned out to be one of the best decisions of my life. My new oncologist tested my cancer for genetic mutations. At the time, I had no idea what he was even talking about. Then I received a call from him on a Friday afternoon stating I have the EGFR mutation. I could hear the joy in his voice. After doing some research I came to understand that this was a very good thing, and within a few days I started to take a targeted therapy called Tarceva. My quality of life is way better than I would have ever thought possible. I’m now 37 and living with stage IV lung cancer, hoping that medicine advances faster than my tumors.
    During my initial treatment I was bitter. I did not want to hear “you can beat this” or “you are the strongest woman I know” or “you are a fighter.” I just wanted to get through my treatment and move on with my life.
    As much as I hate my cancer, it has taught me some valuable lessons. First, it taught me to slow down. I didn’t realize how much I was just trying to get through life, instead of actually living it. Ironically, I enjoy life more now than ever. Second, don’t sweat the small things. Living with a terminal illness helps one understand what‘s really important in life.
     

    Kateri and her family
  15. LaurenH
    In December 2016, I started experiencing a lot of shoulder pain and then back pain leading to shortness of breath.  I went in for an X-ray and MRI, and was told I had pneumonia. I knew that wasn’t correct because I hadn’t been sick enough to get pneumonia.  I spoke to my doctor and insisted on being seen again right away. I was sent to the hospital to have a CT scan, which showed fluid in the lining of my lungs. I had the fluid tapped for testing and it was bloody. I was referred to a thoracic surgeon and underwent surgery to have the fluid drained in March of 2017.  During surgery they did a scope to look around and found and removed a cancerous mass.  I was diagnosed with Stage IV adenocarcinoma lung cancer. 
    I was in the hospital for five days. When I got out on a Friday, I met with my oncologist. They decided to test the mass for genetic mutations. My oncologist called me at home to share the results. I was expecting bad news, but she said she had good news. Genetic testing showed that my cancer was caused by the ALK gene mutation. She told me that having a genetic mutation was like winning the lung cancer lottery because there were very effective treatment options.
    At the time, Alcensa was still a second-line treatment, but my oncologist and I pushed for me to be able to start taking the drug. It was so new that I was one of the first patients at my hospital to start taking it. Just a few weeks after I started taking Alcensa, it was approved as a first-line treatment.
    I have some physical challenges that impact me.  Some of them are shortness of breath, muscle pain and fatigue.  I have nerve pain from my thoracic surgery as well.  I am also dealing with mental challenges.  I am working fulltime however, I struggle with memory loss, focus and vision issues, all of which are side effects of my treatment.  I also deal with some depression.  I explain it to family members as mental torture.  You try to enjoy living but, you are always aware that your life can be cut short at anytime.  The cancer consumes your thoughts 24/7.  That is really hard.
    I recently became a member of the ALK Positive Facebook group, which led me to LUNGevity Foundation.  ALK Positive has partnered with LUNGevity for a research grant for our cause.  It’s a great partnership. I wish I would have known about LUNGevity and the ALK Positive online support group right away. LUNGevity really advocates for patients.  They are such a great source for support and information. I noted that they share survivor stories and I immediately decided that I wanted to share my story with others.  The more we talk about lung cancer, the more others learn and we can get rid of the stigma.  Putting faces to this disease makes a real impact.
    I would tell a newly diagnosed patient to reach out to support organizations like LUNGevity.  Knowledge is power and there is hope.  The more you know about this disease and advocate for yourself the better off you will be.  It’s a scary road but a little easier when you find good support sources. 
    Survivorship means I am living with this disease.   I hope to keep living with this disease for many years and provide support and advocate for others.  I do not want to sit and wait, I want to take action to help myself and others as much as possible.  We need to fight for more research funding and to make others aware of this disease.
    I hope to touch others with lung cancer and inspire them to share their story and find their voice to advocate.  I want to get the word out about ALK lung cancer and remove that stigma that it’s a smokers’ disease.  Whether you smoked or not doesn’t matter. If you have lungs, you can get lung cancer.   I hope that as others find their voices too, we can get the word out about how we lack sufficient funding for research.  That is really important to me.  433 people die each day of lung cancer – we have to change this!
     
     
     
  16. LaurenH
    I found out that I had lung cancer back in August of 1999. I had 3 bouts of pneumonia in the first 6 months of that year. The last chest X-ray showed an area of concern. The next step was to have a CT scan of the area. I had the CT and they saw a blockage in my right lung between the lower and middle lobes. I was sent to see a pulmonologist and he scheduled a biopsy. He preformed the biopsy and they found a tumor that was blocking the area of my main bronchi between those two lower lobes. They tested the sample from the biopsy and it showed Non Small Cell lung cancer. I was staged at 2B.
    At that time they asked if I’d be willing to try a new approach in treatment. I said yes. The new procedure was to give me 6 rounds of chemo then 39 radiation treatments and the surgery to remove my two lower lobes in my right lung. The “old” way was to reverse those steps. Since then they have found no change in survival rates doing it one way or the other. My comment is 18 years and I’m still here. I think it worked great!
    Of course all these years later things have changed but not until recently. When I was diagnosed the Internet was in its infancy. There were no lung cancer support groups on line or in hospitals. We didn’t live long enough as a group to have a call for them. There were cancer in general groups but I was on the young side of the equation which put me in a smaller population. I wish there had been more groups or on line groups.
    I had a young family, I owned a small landscaping business and I paid my own health insurance. My wife was a stay at home mom who worked part time. We had decided it was more important to us to have the children have a parent available and I would just work longer. At that time my heath insurance was an HMO and was the cheapest I could find. But this is when the health insurance crisis started. My premium went from under $400.00 a month to over $1800.00 a month in a year’s time. I somehow managed to stay working through treatment and the surgery. Thank you my friends, relatives, and employees who carried a lot of the load. After surgery my wife had to go to work full time to get us health insurance. For a few months we somehow made it without insurance.
    I started the survivorship journey dealing with multiple doctors’ appointments, testing appointments and running a business. It was not easy but as with anything you make adjustments to fit it in. You have to. The first five years of this survivorship was learning how to negotiate my way. I’m in a physical business. I can’t do what I used to. I had had a bad back for years since the cancer, my back has been great! I can’t swing a sledgehammer or chase a lawn mower or anything rough that I used to do. Instead I worked my way around it. I bought a riding mower, can’t do all the lawns I used to but I can mow larger lawns easier. I can’t move wheelbarrows full of soil, rocks or even plants but I can run a tractor and do it that way. I can’t run anywhere but I walk and I get there slower but not that much slower. You will find new ways to do things and or you don’t do something’s.
    I remember my wife asking the surgeon what will my husband be able to do after the surgery. He said well if he said he played tennis, I’d say he couldn’t play that anymore. I guess the look on her face made him ask why do you ask. He owns his own landscaping business. Oh, hmmmm, I have never told a patient that they couldn’t do something but you’ll know what you can or can’t do. So that’s how I took how I’d live my life. I’ll try to do everything and see if I can. If I have to perform this or that I will find away.
    Over time I have realized how lucky I’ve been to survive this long. After a few years I went searching the Internet for someway for me to give back. I found the Lung Cancer Alliance through their website and online support group. That is when I started to talk to anyone who was newly diagnosed with lung cancer. I vowed I would try to make sure that no one would start this journey without someone to say I know how you feel and it’s ok to be scared, alone, and despondent. No one knows what it is like to have someone tell you, you have lung cancer, any questions? As they did to me the very first time anyone even mentioned to me that I had cancer. Scared is not even close to how I felt.
    I found out about LUNGevity from a couple of survivors who were on another site. I also found that I noticed more advocacy from LUNGevity in respect to serving the lung cancer community, informational posts that I found very interesting and the very active organization that seemed to be everywhere reaching out to those in need. It certainly fit with my own advocacy thoughts about trying to reach out to the newly diagnosed.
    As a closing thought, try to always keep in your mind, there is always hope, hope not only for today but for tomorrow and the next day and the day after that!

  17. LaurenH
    I was first diagnosed with small cell lung cancer (SCLC) in January of 2014 from a biopsy of the tumor that was sitting on top of my left lung.  I had no symptoms I was ill yet I was urged by a radiologist who was a friend of the family to get an early lung cancer detection CT scan of the chest because I had been a smoker years before and grew up in a household of heavy smokers. So for me, it came as a total shock when I was told my diagnosis and “to get into the city for treatment, ASAP. “  For the next two years, I went through the standard treatment for limited stage SCLC, -chemo, radiation to the tumor, and prophylactic radiation to my brain. Good news, the tumor had shrunk but bad news, a new one had begun to grow in my abdomen. Now there was no option left for me except to go on an immunotherapy clinical trial, which I began in June 2015. I know I’m one of the lucky ones. I’ve survived over two years thanks to being enrolled in the clinical trial with the bonus of having virtually no side effects.
    I first heard about LUNGevity through my oncologist when he invited me to be one of his “patient-guests” at LUNGevity’s Gala in 2016.  Encouraged by the speakers and to learn about more about LUNGevity’s focus on increasing the quality of life for cancer survivors and their caregivers, I contacted Katie Brown, LUNGevity’s Vice President of Support & Survivorship, to become a volunteer. I wanted to support other SCLC patients who were probably as confused and conflicted about their choices as I was when I was first diagnosed with this less common type of lung cancer.
    Katie gave me information about “LifeLine”, LUNGevity’s peer-to-peer support program that matches patients and caregivers to mentors with similar diagnoses. LifeLine mentors forge a personal connection by getting to know their mentee, offering words of encouragement, and by sharing aspects of their own cancer experiences. LUNGevity connected me to my first LifeLine mentee in early 2017.
    When I’m on the phone with mentees, I try to get a quick take on what that individual would like to get from speaking with me. I usually keep my personal saga with SCLC brief so the mentees have a chance to tell me what’s been on their mind. Sometimes, a particular part of their cancer situation is upsetting or causing frustration, while other times, they would just like to talk it out and have me listen.
    If I hear we have points in common, I’ll say something like “I get it. X-Y-Z happened to me, too!” Then I reassure them that they will get though it and find the solution that’s right for them.  Some mentees just want a one-time chat to know someone else has survived the same illness.  Others, who don’t have anyone they feel close to, might call me more frequently.
    One time I called Katie to get her advice on how to handle a situation that I felt was beyond my capacity to deal with.  She was very understanding and together we came up with workable solution. So if you become a LifeLine mentor, don’t be afraid to reach out to the LUNGevity staff. They’re there to support you, too.
    The most rewarding thing about being a mentor is hearing someone newly diagnosed with SCLC say,  ”Oh I’m so glad I talked to you. I feel like this is doable now. If you survived, maybe I can too.”  Hope is the most precious gift I could ever offer somebody, which may sound a bit drippy, but it’s so true.  I get to offer hope every time I tell my story that I have survived longer than I, or anyone else, would’ve believed possible.
     

    Photo credit: Ben Hider for the CURE Magazine
  18. LaurenH
    I was 52, a wife, mom and teacher when diagnosed with stage 3a NSC Adenocarcinoma lung cancer in September 2012. I had no symptoms and did not fit the criteria of a lung cancer candidate.
    An observant radiologist had noticed a small shadow in my lower right lobe when viewing an unrelated abdominal scan in 2010.  Because I didn’t fit any of the LC criteria, no specialist or surgeon thought that it would be lung cancer.  They adopted a “wait and see” plan using two six-month scans and then moved to a one-year scan at which that point indicated that my “nothing” spot had in fact grown and was probably lung cancer.
    My world had been turned upside down.  I quickly had surgery to remove my bottom right lobe and several lymph nodes. Unfortunately, cancer was found in the lymph nodes and the tumor. This led to four rounds of chemotherapy (Cisplatin and Navelbine) and 25 treatments of radiation along with all the mental and physical issues that many people can only imagine.
    Cancer can be a very lonely disease even when you have a ton of support. I couldn’t find survivors in my area so I began searching out on-line groups that I could communicate with about my disease.  This is where I discovered LUNGevity! The members of this group and all those associated with the organization wrapped their cyber arms around me and welcomed me into their world.  This was literally a life-saving experience for me and continues to be part of my daily communication. 
    Two years ago, people in the group began speaking about the National HOPE Summit in Washington, D.C. and how beneficial it was for both patients and caregivers.  Because I am Canadian, I inquired as to whether my husband and I could attend. I was told of course we could!
    My husband and I attended HOPE Summit and that experience has changed my life.  Meeting other survivors and hearing from physicians and researchers empowered me to return to my own country and begin asking questions about lung cancer research and most importantly, begin my work as a lung cancer advocate.  
    The Summit allowed me to meet so many people who are advocates not only for their own health but also for lung cancer research and advocacy work. These people meet with politicians, organize, and participate in lung cancer fundraisers and teach so many of us about treatment options. 
    Although Canada does not have as large a network, there is a small group of us who have been empowered to meet with politicians, educate and support others with the disease and spread the word about early lung cancer diagnosis, all because of our experience at a LUNGevity HOPE Summit.
    Education is power but knowing you are part of a strong, supportive, and knowledgeable group of individuals is invaluable.  Thank you LUNGevity!

  19. LaurenH
    Around the first of December 2015 I noticed I was having some shortness of breath when I climbed the flight of stairs to my apartment. I didn't think much of it at the time. I just chalked it up to my age (62) and being out of shape. As time went on the shortness of breath became worse and I developed a persistent cough with some transient hoarseness. I decided it was time to see the doctor.
    My primary care provider diagnosed me with asthma/bronchitis, which I had many times over the years in the past. He put me on an antibiotic and an inhaler which usually worked. As the days went by and I did not get any better, I went back to see him. He switched the antibiotic and prescribed a cough syrup. I still wasn’t getting relief, so I went back a couple more times. The doctor seemed to be getting frustrated with me, and I knew I needed to see a specialist.
    I scheduled an appointment with a pulmonologist. A chest x-ray showed a large pleural effusion. I underwent a thoracentesis, which revealed malignant cells in the fluid. A CT also showed several masses in my right lung. I was sent to a thoracic surgeon who performed a pluerodisis and biopsy. The biopsy revealed stage 4 metastatic non-small cell lung cancer (NSCLC) that tested positive for the ALK mutation.
    After learning about the advancements in the treatment of NSCLC, especially in the ALK mutation, I chose to have treatment. My oncologist recommended an oral targeted therapy drug Xalkori (crizotinib). He explained that the drug was not a "cure" but was very effective in shrinking or slowing tumor growth, which it did with very few side effects. 
    Shortly after being diagnosed and before beginning treatment with Xalkori I started researching everything I could find about lung cancer just trying to get a better understanding of my disease and find support from others who were dealing with lung cancer, it was during this research that I came upon the  LUNGevity website. The name was the first thing that attracted me, I thought it was a neat play on the word longevity but as I began reading I soon realized there was a wealth of information and support there and that the organizaton was very actively involved with funding for research which really appealed to me because I feel it is through research that a cure will one day be found.                 
    I liked what I learned and decided to become a Social Media Ambassador so that I could help spread the word about lung cancer and clear up some misconceptions about the disease. I attended a Hope summit put on by Lungevity in Washington DC where I was even more impressed with the organization and the wonderful people involved with it. 
    The LUNGevity website, Inspire, and the Alkies Worldwide Facebook group have been valuable resources of information and support for me. I am also a member of a cancer support group at my church.
    The biggest challenge to me is always living with this disease in the back of my mind. Every scan or blood test reminds me that there is a potential killer living in my body and I don't know what it is up to until I get my results. It is as much a mental disease as it is a physical one.
    To me, a survivor is a person who has overcome something bad and lived to tell about it.
    If I could give any advice or words of wisdom to a newly diagnosed patient, I would first tell them that lung cancer is no longer the automatic death sentence that it was in the past. I would tell them to demand gene mutation testing so they know what kinds of treatment options are available. I would also tell them that lung cancer treatment is a waiting game. It’s helpful to distract yourself with life and not to focus solely on this disease. Don't give lung cancer that much power over you!
    I hope that my efforts as a volunteer will help raise awareness and funds for lung cancer research. I want to make people aware that it only takes lungs to get lung cancer.
     

    Sam and her husband Bob in Jackson Hole, Wyoming, shortly after her diagnosis.
  20. LaurenH
    My husband, Allan, died from stage IV lung cancer in June 2009. I was feeling a need to get involved with an organization dealing specifically with lung cancer.  I researched LUNGevity, and thought it was a very worthwhile organization.
    My first experience with LUNGevity was in November 2009. At the time, my daughter, Stephanie was a college student in NYC. She formed a team for LUNGevity’s Walk to Beat Lung Cancer, which later became Breathe Deep NYC.  My son and I joined Stephanie and her roommates at the walk. I was very impressed with the event and the volunteers.  We continued to walk and volunteer for the NYC event through 2013. Stephanie was on the committee for the walk during her college years.
    We wanted to start a Breathe Deep NEPA event in our community. Northeastern Pennsylvania is an area with an above-average rate of lung cancer. So many lives are touched by this disease—those of the patient, the survivors, families, and friends. My major goal is to bring awareness to the community about lung cancer. The event also brings people impacted by the disease together to help raise awareness and critical funds.
    The most rewarding thing about being a coordinator is the great feeling that I am helping lung cancer patients by raising funds to help others survive.  I was so devastated by not being able to help my husband.  Hope is my mantra.
    I hope that our efforts will continue to fund research to find an early detection test, most important, and more therapy treatments.  Also the support LUNGevity offers to patients, families and caregivers.
     

  21. LaurenH
    When my dad, Fred Gontarek, was diagnosed with lung cancer, I felt lost. I wasn’t sure where to turn. I searched the internet as most people do to see what support was out there and what was being done to raise funds for research. Sadly, there were not many local organizations or funds being raised for lung cancer. I vowed to try to change that. I found the Breathe Deep Philadelphia Event was coming up in the Fall of 2011 and knew we needed to be there for Dad and with Dad.
    Team Fred started in April 2011 with the motto “No One Fights Alone” to show my dad how many supporters he had and to give him hope during his battle with lung cancer. Fred fought as hard as he could until he passed away on April 28, 2012. The motto was then changed to “Never Forget” since our memories of him and what he meant to us continues to live on. Team Fred first walked in 2011 with Fred by our side and today we still walk in his memory as he watches over us.
    I first formed a team for Breathe Deep Philadelphia in 2011 and have continued to volunteer each year after that.  This year it is an honor for me to be the event coordinator for Breathe Deep Philadelphia. The Breathe Deep events program provides knowledge and support during a difficult time.  These events give friends and loved ones a chance to gather together to not only raise funds but raise awareness and offer their support.
    The most rewarding part of being a Breathe Deep event coordinator is knowing that I have a part in raising the funds necessary for critical lung cancer research.  My dad was a man who would do anything for anyone and I know that if he were here today he would be right by my side helping in any way he could.  My focus is keeping his memory alive while hoping to positively change the lives of others.
    I hope my fundraising efforts will support life-saving research that is necessary so that one day we can live in a world where no one dies from lung cancer.

    Kara (right) and Team Fred at Breathe Deep Philadelphia

    Kara and Fred dancing at her wedding
  22. LaurenH
    By: Deborah R. Burns
    “Everybody can be great. Because anybody can serve. You only need a heart full of grace, A soul generated by love.” - Dr. Martin Luther King, Jr.
    Charlotte Jamison is many things: a Christian, a mother, a teacher, a friend, and a volunteer.
    Over the past two years, Charlotte has volunteered her time and talents to assist in the efforts of the LUNGevity Foundation’s Annual Breathe Deep DC 5K Walk.  Charlotte serves as the backbone and chief fundraiser for Team Open Technology Group: (OTG) United for A Cure.
    Charlotte and my family have been friends longer than I can remember. She and my husband Leon had a special relationship. I still remember how they would often laugh together, share experiences, and enjoy working together on church projects. After my husband was diagnosed with lung cancer, she was the key person who supported me and walked me through that unforgettable journey. Since my husband’s death in 2011, she continues to be a huge inspiration in my healing.
    A member of New Canaan Baptist Church in Washington, DC. (Gregory M. Sims, Pastor), Charlotte has engaged the entire congregation in being part of this important cancer-fighting effort. She sets up a beautifully decorated table each year to receive donations and to recruit walkers for the OTG Team. She and her helpers work tirelessly documenting information, promoting the cause, and speaking to individuals about the walk.
    On the day of the walk she always arrives with a smile and eager to help.  She immediately begins handing out goodie bags, gathering our Team and rallying “Team Spirit”.  Many of the volunteers from other teams admire her enthusiasm and dedication for the cause.
    She inspires through example.  I can never thank her enough for all that she brings to our Team and fighting this disease that claims thousands of lives each year. Did I mention that she’s 80 years young! God strengthens her to do His work. She often says “As long as the good Lord enables me to work, I’m going to work.”
    Open Technology Group’s cup runneths over for having Charlotte Jamison serve as a volunteer for OTG: United For A Cure. We are truly blessed by having her.

  23. LaurenH
    It came as quite a surprise when I was first diagnosed with Stage 3 lung cancer in 2007. It was an even bigger shock to learn that my lung cancer was caused by exposure to high levels of radon gas in my own home. I want to keep sharing my story with the hope that it might prevent others from getting lung cancer from radon gas. 
    My husband and I did extensive renovations on our house to turn it into our dream home. About five years later, I developed a nagging cough. I went to the doctor, who sent me for a CT scan. The scan showed a mass in my right lung, so we scheduled an appointment with a pulmonologist to have a biopsy. The doctor who performed the biopsy called to tell me that I had lung cancer and that it was inoperable. He told me that I had four months to live. 
    My husband had just returned from a trip to Africa and my mother was staying with us while she recovered from surgery. I turned on the T.V. and Jordin Sparks was singing, “This is My Now” and it just hit me that “you can sit here and feel sorry for yourself or you can fight it.” It’s crazy how the universe works.
    Shortly after I was diagnosed, we had our home tested for radon gas, the second leading cause of lung cancer. The test showed levels that were 6-times the EPA recommended action level. I had my right lung removed and underwent 5 weeks of radiation and 4 months of chemotherapy. I started to gain my strength back and started looking for a lung cancer community. 
    In the beginning, there was very little information about lung cancer. I couldn’t find anyone to talk to. Then my daughter found out about LUNGevity and a walk they were holding in Manhatten Beach, California, called Breathe Deep Los Angeles. She said we should go there on a girls’ trip. Who wouldn't want to go to the beach after dealing with lung cancer treatment? My first Breathe Deep experience was so inspirational. There were over 350 people walking whose lives had somehow been touched by lung cancer. I’d never been to anything like that and there was nothing like that where I lived near Salt Lake City. When we got home, my other daughter said, “Why don’t we start one here?” So we held our first Breathe Deep Salt Lake City in 2012. 
    I remained cancer free for 6 years, then in 2014  they found a fist-sized tumor in the front of my brain and a smaller tumor in the back which was metastasized lung cancer. They were able to remove those tumors and I went back into remission until that December, when they found 6 more brain tumors. I underwent surgeries to remove those, and then in January 2015, I started on a new chemo pill that I take orally. This treatment has worked very well for me and now there are four more on the market that would work just as well or better if this one stopped working. This is why I am so passionate to raise funds for lung cancer research. I am living proof that it works. The new treatments are so effective and amazing, but researchers need funding to find a cure.  Lung Cancer research receives the least amount of federal funding of all types of cancer, yet it is the deadliest. I feel it is so important to raise funds to improve outcomes for lung cancer patients. 
    I think the most rewarding thing about being a Breathe Deep event coordinator is to see people coming back year after year because they know it’s a good cause. It makes you realize how many people care about health and our lungs. The more people you talk to, the more you find that they have a connection to lung cancer, whether it’s a family member or friend. In addition to raising funds and awareness, we try to provide information at our event. We have speakers who talk about new discoveries in lung cancer treatment and radon. 
    In fact, just because we’ve been raising awareness, a lot of the real estate agents are on board with getting homes they sell tested for radon gas. A local organization that does radon testing is even donating $20 of every radon test they do to LUNGevity. They’re promoting the walk to all of the real estate agencies that they work with. It’s amazing how generous people are. At first, I thought I can’t go around asking for free stuff. But I’ve found that people are willing to help! 
    I really feel like the grassroots is the way to reach people. I’ve had more success talking to people one-on-one. We’ve done some women’s groups and I’ve spoken at classes on Radon. I also worked with a social worker to put together a lung cancer support group. The online groups are great, but sometimes, you just really need to talk so somebody in person. In addition to LUNGevity, I’ve also been doing a lot with the Utah Radon coalition. And I’m going to be speaking at the international radon convention in New Orleans in October. I want to show that there’s a face to lung cancer caused by radon gas. If it can happen to me, it can happen to anyone. Preventing lung cancer is so much easier and less costly than treating lung cancer.
     

  24. LaurenH
    Allison Doan has been on a long journey of self discovery, from a life of elite privilege to a brief time in federal prison, and then a battle with stage IV lung cancer. Through years of ups and downs, and finding forgiveness and strength she didn’t even realize that she possessed, Allison has remained determined to share a message of hope.
    Allison’s broken road has led her to a place of peace. She’s written an inspiring memoir, Bruised and Beautiful, which will be published later this month. By sharing her story, Allison hopes to inspire people that it’s possible to get through life’s hardships with love, faith, and trust.
    “I wanted to write the book when I was facing prison because I knew that I was going to take something horrible and scary and turn it into something good. I wanted to convey a message of hope that you can face anything with God on your side. When I started writing, I thought I’m going to end it here, and then the cancer struck,” says Allison.
    She describes her cancer diagnosis on her Caring Bridge site:
    “In early November 2014, I noticed a large lymph node on the right side of my neck. I was also having some pain with breathing and a dry cough. After some time had passed and no progress from antibiotics, my primary doctor ordered an ultrasound and several CT's which would reveal some concerns.
    The CT had shown 3 large lymph nodes in my chest (mediastinum area), 3 nodules in my lungs and 2 nodules in my thyroid gland. I was referred to an oncologist who ordered a biopsy on December 29. I was preparing myself for the news of possible lymphoma or squamous cell carcinoma according to what the doctor said. My doctor informed me that I have what looked to be medullary thyroid cancer a very rare form of thyroid cancer. A blood test was ordered to confirm this and a PET scan to see where the cancer might have spread.
    I began the arduous task of research to find those doctors that might have a specialty in this area. We decided to head to MD Anderson in Houston for a second opinion. After more testing and another biopsy it was confirmed that the cancer was actually coming from the lung. They diagnosed me with Stage IV neuroendocrine lung cancer which is incurable.
    After the shock and fear subsided I began to cling to my strong faith in our loving heavenly Father who holds me and this situation in His loving hands. Jeremiah 29:11 'For I know the plans I have for you sayeth the Lord, plans to prosper you and not to harm you, to give you a hope and a future.'”
    Realizing that her story wasn’t complete, Allison continued to write while undergoing treatment, hitting some roadblocks along the way. Allison says she “learned to navigate through the world of a cancer patient: days of normal, days of doctor visits, days of feeling great, and days of feeling crummy. Lung cancer is an up and down journey of new treatments. Then they stop working and you try something else.”
    Allison’s husband and care partner, Keith, has been by her side since the moment of her diagnosis. The two were married while she was undergoing treatment and planned their honeymoon in St. John in between clinical trials.
    Allison shared her story with country music artists Dave Fenley and Ray Johnston, who penned a song in her honor. The song, called Bruised and Beautiful (Alli’s Song), is full of grace and gratitude. It carries Allison’s powerful message of living each day to the fullest and trusting God.
    Part of proceeds from book and song will go to LUNGevity Foundation. LUNGevity was the first organization that Allison found when she started looking for online support after her diagnosis. The song Bruised and Beautiful is available for download on iTunes. Allison’s memoir of the same title, will be published in June 2017.
    In May, Allison entered hospice care to help with symptom relief and quality of life. She tells her family and friends that she’s staying “Allistrong” and that she’s humbled by the love, support, and encouragement she’s received. “Above all,” Allison says, “life is worth living.”
     

    Allison and her husband Keith, with their children Daniel, Peter, Megan, and Grant.
  25. LaurenH
    I was diagnosed in April 2017 with lung cancer (stage 4 adenocarcinoma with malignant pleural effusion). I celebrated my 47th birthday in May. My husband and I will celebrate our 22nd wedding anniversary in July. We have a 12 year old daughter. This is my second stage 4 cancer diagnosis.
    The first was shortly after my husband asked me to marry him. I was 23 years old and had stage 4 Hodgkins. I was treated with a combination MOPP ABVD regimen. My life was placed on pause while I took 24 treatments and tried to make a new normal. After 15 months of chemotherapy, I was given a clean bill of health. The original plan included pinpoint radiation but after consulting the tumor board, my oncologist told me the group decision was to stop with chemo. Now I could plan my wedding and get on with my life. My oncologist and nurse even attended my wedding.
    Years later at a follow up, my oncologist told me that we dodged a bullet by not doing the radiation as many patients were now being diagnosed with leukemia or breast cancer. I remember feeling a cold shiver at the thought that I could have been in that position. We were blessed with a daughter even though I had been told I most likely would be sterile.
    Fast forward to 2017, I had a cold early in the year but could not shake the cough. I was given a couple of rounds of antibiotics, then was referred to the pulmonologist. I had a thoracentisis. The pulmonologist told me not to Google, but I did, not about pleural effusions but about long term effects of MOPP ABVD. The following week, he gave me the diagnosis and I admitted my transgression. Maybe the lung cancer is just the hand that I was dealt, but I can't help but tie it back to the treatment for Hodgkins.
    I have been very fortunate to have wonderful support from my family, friends, and co-workers. I have also had incredible medical care from physicians, nurses, and support staff.
    If any Hodgkins survivors who only had chemo and have also been diagnosed with lung cancer reach out to me, I would love to correspond and discuss histories. Thanks for reading my story.
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