LouiseB

Time is supposed to heal our wounds, that’s what people say; but when you lose your best friend you realize that no amount of time will heal that void that is left.
My mother was diagnosed with non small cell lung carcinoma three months after I turned eighteen, only weeks after what would turn out to be our last family portrait. The day the test results came back the only words I heard during the meeting were “cancer” which meant someday I’d be burying her. I don’t recall anything else; but she heard something very different she heard “cancer” and thought how do I fight this and win.
She had an amazing oncology team that outfitted her with an aggressive and varied game plan and a thing called a port; but the most important thing they both shared was an optimistic attitude. When they gave her the port in her chest where she would get her chemotherapy , she was not upset that she had to get a port or that she was having chemicals placed in her body and hoping they would work; nope she was upset she was not the first person to get the port , she was number two. When they decided on radiation she got her long beautiful brown hair cut off into a short cute style and donated it for other people to get a wig; after all hers would grow back when she was in remission. She had an amazing belief that God would not have given her this to battle if she were not capable. She believed it was given to her because she was supposed to teach someone, somewhere, something and it may not be during her battle or during her remission it may be long after her death ; but if one person was saved or one person learned something than the fight was worth it.
We took the time we were given and made amazing memories going to see our favorite places like Red Rocks or the buffalo herd, we also made memories and new traditions when we spent time in the hospital. If we were there during football season we ordered pizza and had it delivered to her room and then invited her nurses to come have a snack and catch up on the score. We enjoyed watching animated movies and we even got her a Gameboy to play the mind teaser games while she sat for hours getting chemo. In January, we received word our dad had suddenly passed, my parents had divorced when I was two. Her concern while she was in a hospital bed was not herself, but was us , her kids. Several months later we got a phone call that her father had unexpectedly passed away. She was a daddy’s girl and was unable to travel to his funeral so we filmed it for her. When we were in another state, our “sister from another mister”, her friend from work who was like a daughter to her, stayed with her while we buried our dad. It was on this trip we almost lost her, her blood pressure was so low they said they didn’t know how she was awake and talking. She persevered.
As she grew weaker we made final plans, it was an enormously painful task asking her to decide where she wanted to be buried, what songs she wanted played and writing her will and her making the decision to not be resuscitated. Her wish was to die at home and we wanted to give her that. She had sacrificed her life for us, given us everything we could have ever wanted. She fought incredibly hard, she was my superman and I was watching her die and there was nothing I could do about it. She said that her goal was just to make it to January, so that her kids didn’t lose both their parents in the same year, but she would not make it. I remember begging God to either heal her or take her but I was not fair to make her stay just for us. It was not fair to make her suffer when she gave us such a wonderful life, after all we had each other to lean on. She deserved to be at peace.
Fifteen days after her fifty-fifth birthday we made the calls to have everyone say their goodbyes. She was aware of where she was so we brought photographs and blankets and loved on her, the nurses said she knew we were there but she couldn’t respond or open her eyes or anything. I gave her a kiss and told her it was okay to go, that she didn’t have to stay here in pain for us, she deserved to be happy and at peace with the family in heaven.
I stayed with her and she passed on October 18, 2007.
This year marks ten years since she has been gone, she has missed so much. I enlisted in the military, my brother is dating a wonderful woman, my sister got married and her and her wife have an adorable son. I got married and have a now five year old step son, bought a house and will complete my college degree this year. She gave us life and taught us about everything from friendship to how to do laundry but most importantly she taught us to never give up because even cancer can be beaten. It was not a physical victory, but victory for the soul.
No matter what happened through her illness she never let it define her as a person. She was able to complete one last thing on her bucket list when she earned her wings: she was able to be an organ donor and donate her eyes to someone who needed them. Even in her death she was able to put someone else before herself ! Please if you are fighting this illness know that there is hope, it may not end up being a physical victory but if you keep your sense of humor and your love of life than cancer can never truly be victorious. God bless you on your trip down the yellow-brick road!
In loving memory: Patricia Fay Hartlep (October 3, 1952- October 18, 2007)
Thank you to all those who care for those fighting! Bless those who love those struggling and rejoice for those who have earned their wings!

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!

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!

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!
 
 
 

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