Understanding Your Late Stage Lung Cancer

4 years and 8 months ago I had a fever every night for more than a month. I felt absolutely fine with the exception of the fever. My stubborn self decided to go to my Primary Care Physician to see what was going on. Beginning my new journey This was Day 1 of my lung cancer journey. Little did I know that within 4 weeks after that I would receive the conclusive diagnosis of lung cancer with a tumor in 4 out of my 5 lobes and probably had a very limited time on this earth. 4 years and 3 months ago, I had both lobes of my left lung removed and began chemotherapy eight weeks later. It was the beginning of my newest journey. Since then I have had 3 different types of chemotherapy, radiation to my chest, and now currently immunotherapy. My life was changed forever. Initially, I was depressed, upset, grieving and all I could think about was, "I am going to die." We all know there are only 3 things in life that are guaranteed - birth, death, and taxes :) Realizations following diagnosis I quickly realized that I wasn't scared for my own life but for the life of my children and grandchildren to prepare for life without me. This was so hard for me to believe. Did I think I would live forever? No, but I never thought something would cause me to die sooner. This is one of the hardest things to come to grip with. I quickly realized I can't live my remaining life this way. I was lucky in so many ways. I thank my surgeon for removing the two largest tumors. I thank my oncologist every day upon waking up knowing without my treatments and extremely qualified medical team, I wouldn't be here now. Finding my purpose That has totally changed my view on my lung cancer. It now is my "friend" that I don't really want but I know it is there. I try to live each day to the fullest. I talk to my family every day. And, I advocate for more lung cancer awareness and research. My mother's family had all the siblings (8 of them) die of some form of cancer. I now believe I was put on this earth to make people more aware that ANYONE can get lung cancer. Actually, anyone can get any form of cancer. No one is immune. This is my most important message of all. The ability to write about my experience, speak to newly diagnosed patients, and use my platform to open society's eyes to the fact that cancer is not always a death sentence is my mission. Why I continue to smile Don't let me confuse you. I know in my heart this beast will eventually win in our battle. But as long as I can fight, educate and advocate, my faith that I will continue to survive is what wakes me up and makes me smile. Cancer you may win in the end, but for now, I keep the faith every day that my treatments will slow you down and even kill you someday. Just remember, there is joy in everything. Cancer may not be defined by joy, but the relationships I have found, made deeper and taking one day at a time, make it all worth the journey. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] Editor’s Note: We are extremely saddened to say that on January 28, 2020, Jennifer Toth passed away. Jennifer was a passionate advocate for the Lung Cancer community. She will be deeply missed. Not that many years ago, when a patient was diagnosed with lung cancer, the doctor told them, “Go home and get your affairs in order.” Those harsh words carried an almost certain death sentence for the patient. There was no referral to an oncologist. There was no hope. Today, thanks to recent treatment advances, lung cancer patients are living longer and better lives. Does that mean lung cancer patients no longer need to “get their affairs in order?” No, friends. Do not allow death to sneak up and catch you off guard. Death happens to us all. A good way to exercise control is by planning for it! There are many preparations adults need to make--especially when they are facing a life threatening disease. (Future articles will address Health Care Power of Attorney and Living Wills.) While it may be tough to discuss, it's an important topic. Discuss your final wishes with your loved ones. This is advice for every adult, even those who have NOT been told “You have lung cancer.” We all should HOPE for the best but PREPARE for the worst. I hear people say, “If something should happen…”. It is not a matter of “if;” it is a matter of “when.” It is heartbreaking to watch people try to second-guess their loved ones’ wishes. These folks are grief stricken and may be vulnerable or fall prey to unscrupulous funeral home directors. If possible, the best way to handle your final arrangements is to take care of them while you are alive. Thankfully, my father did that. Not only did he make all the arrangements for him and my stepmother, he also paid for everything in advance. The way he paid for his service and mausoleum was by making the funeral home the beneficiary of a life insurance policy. When my father passed, the funeral director handed me papers with detailed plans my dad made, confirmed by his signature. The funeral home carried out all of dad’s wishes--exactly as he wanted and with little stress on me and my siblings. Making your final wishes known demonstrates your love for your family. When emotions are turbulent and raw during the period of initial grief, it is too much to expect your loved ones to make decisions about what to do and how much to spend. It’s OK if you cannot afford to prepay. The most important thing is to let your wishes known. Talk about it. Write it down. Do not include your final wishes within your will. There are legal issues that could keep the content of your will undisclosed for weeks or even months after your funeral service. The document stating your wishes does not need to be anything elaborate. It does not need to be drawn up by an attorney. It simply needs to state your wishes clearly. Be sure to make copies and give a copy to those closest to you. Make sure they understand your wishes. Do you want your body to be buried or cremated? Do you have a cemetery plot? Do you have special music you want during your memorial service? For more information, below are resources links: Last Wishes for Procedures at Time of Death Five Wishes (sample) [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"],Palliative care. Do you know what it is? If you don't, then you are in the same boat as about 78% of people who answered a 2011 survey done by the American Cancer Society.2 In fact, only 8% of people said that they feel knowledgeable or very knowledgeable about what palliative care is. That's a shame because palliative care can make your life a whole lot better if you are experiencing symptoms from your cancer or cancer treatment that are not being addressed by oncology. Palliative care is not hospice care Even though palliative care has been around for a while, a lot of patients and even a lot of doctors are unfamiliar with it. During a webinar I listened to in August 2018, a person wrote in saying that she requested palliative care services and her oncologist refused a referral. He said she was not ready for palliative care. [native] That's a problem. You see, palliative care is all about treating your needs and helping improve your quality of life. It is not hospice. It is not about providing end of life services. In short, you can think of palliative care as needs-based and hospice as prognosis-based. Only patients deemed by their oncologist to have six months or less left to live are eligible for hospice services. When you choose hospice, you choose to give up all medical treatments other than those necessary to keep you out of pain and suffering. What is palliative care? Palliative care is completely different. When you go for palliative care, you continue receiving oncology treatments. In addition to those treatments, you will see a team of medical professionals dedicated to helping improve your quality of life in whatever way is needed. The team might include a physician, a nurse practitioner, nurses, social workers, a chaplain, a psychologist, a financial advisor, dietician, physical therapist, and a pharmacist. Not all teams will include all of these people, but they will know how to get you access to the medical services that you need in addition to your oncology needs. What is also important is that in most cases palliative care is provided not only for the patient but also for his or her family. Its job is to treat the whole patient, including the needs of the family. As I listened to the Webinar, one of the burning questions I had was whether insurance pays for the program. The answer is yes. The palliative care doctor or nurse practitioner generates a bill for your insurance company just the same as any other sub-specialist does. While not all of the services (like the chaplain or social worker) are billed to your insurance company, the hospital or community programs help pay for what can't be charged. As Dr. Andrew Esch, the palliative care doctor who gave the Webinar, said, "Billing is our worry, not the concern of the patient." Outcomes and benefits Dr. Esch said that there are (at least) five outcomes for patients receiving palliative care: Relief of pain and symptoms Better family support Reduction in hospitalizations and ER visits Reduction in unnecessary tests and procedures, and Patients may live longer. Yep, you read that right. According to an article published in the New England Journal of Medicine in 2011, in many cases, patients receiving palliative care lived longer than patients who did not receive those services. Are you interested in learning more about palliative care? According to Dr. Esch, the best Website on the Internet to learn about what it is, where you can get it, how to talk to your oncologist about it, and more is: Get Palliative Care. Have you received palliative care? What was your experience? [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] February 20th of 2014 and the worst day of my life. It was the day I heard the words directed to me, "I am sorry but you have lung cancer." Anyone reading this probably had the same experience for themselves or a loved one. In less than one minute, my entire life flashed before my eyes. And, all those who I lost to cancer. My mother, my grandparents and countless aunts and uncles. They were the only people I could think of for the first 24 hours. My life flashed in front of my eyes as a motion picture movie, but the stars of the show were all whom I had lost. Moving through grief to acceptance I've written in the past about the Stages of Grief a person goes through when losing their loved one. When you hear you have Lung Cancer, it is the same stages. BUT, today is 4 years, 5 months and 20 days later and my outlook is tremendously different. I went through denial and anger at the same time. My mind was spinning. I then found myself bargaining with my doctors. As if to say, "YES, do that to me and I'll be fine." When I found out about my progression, I was severely depressed. Now, I am in acceptance. However, I have gone way past that. In April I was present for the birth of my second grandchild. My first grandson was 11-1/2 when his sister was born. My first granddaughter. I saw her take her first breath just as I had seen her older brother and father do. Realizing my truth It was at that moment that I truly realized my truth. If I were to pass away tomorrow, I have truly seen my miracles. Giving breath to my seven children and watching my son's two children take their first breath. Now to be really honest, I pray daily to allow my body to continue to respond to my therapy, especially my first daughter who will be giving birth in October. How lucky are those of us who are parents? In the middle of a fight for my life, I witnessed breath. The latter is now sustaining life. I wake up each day and the first thing I think of is my children and my two grandchildren. When my therapy makes me feel like crap, I think of my family. There lies the strength you need to continue to fight this beast we call cancer. Your life. Continue the memories on a daily basis. Those great memories are what reminds me each day that my life isn't over yet. And won't be for a long time, if I can help it. Cherish your family. Your life begins and ends with a breath, and a few in between. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] Editor’s Note: We are extremely saddened to say that on January 28, 2020, Jennifer Toth passed away. Jennifer was a passionate advocate for the Lung Cancer community. She will be deeply missed. A good friend of mine asked me a little while ago if I think about the fact that I have lung cancer every day. I had to stop for a minute in order to figure out my answer to this question. Not at the front of my mind I finally decided that while I DO think about lung cancer every day, I don’t think about actually having lung cancer myself every day. That sounds strange, right? Well, I am very involved in advocacy work, so rarely a day goes by when I don’t have a conference call, email or text message related to some aspect of lung cancer. However, I don’t wake up every morning thinking about the fact that I have lung cancer anymore. I certainly did when I was first diagnosed! But as the years have passed, I have somehow managed to get used to the fact that my own personal lung cancer situation is part of my life and will always be part of my life, but isn’t always my biggest concern every day. Fitting cancer into my to-do list It definitely helps that I feel well, and have for the majority of my almost five years living with lung cancer to date. But the concerns of daily life living with a husband, two teenage boys, and most recently, a 5-year old shih-tzu dog, often take priority. I have many other things to think/worry about — Where are the boys? Are they out past curfew? Are they doing their homework? Is my older son working on his college applications? Does the dog need to be walked? Do I have to cook dinner tonight? The list goes on! Worry and scanxiety That isn’t to say that I never think about or worry about having lung cancer. I often have fleeting thoughts, especially when people mention an event in the future, wondering if I will still be around for it. I also cannot help thinking about my own fate whenever a member of the lung cancer community passes away. These fleeting thoughts become more and more common as I approach a scan date, finally turning into full fledged scanxiety a few days prior to my quarterly scans. That’s when I start to worry the most about my scans showing progression. [native] However, on a day-to-day basis, I have managed to put my lung cancer in its place as part of my life, but not the most important part. I know not everyone loves using the term “survivor” and I’ve written about this in the past, but I truly feel like I am a survivor of lung cancer because I am able to continue with my life while living with lung cancer. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"],Palliative care is a specialized field that aims to alleviate symptoms and maximize the patient’s quality of life. Palliative care does not focus on curing the disease or prolonging life, which is the goal of other cancer treatments. However, palliative care is an important part of the patient’s treatment plan and encompasses physical symptoms, psychosocial distress, spiritual distress, and caregiver distress.1 Palliative care is often provided by a number of healthcare professionals, often working as part of a multidisciplinary team. The team may include doctors, nurses, dietitians, pharmacists, psychologists, and social workers.2 Palliative care for physical symptoms Patients with advanced lung cancer experience the most troubling symptoms as well as dealing with potential side effects from treatment. Symptom management is one of the critical parts of care for patients with advanced disease. The most common symptoms of patients with late stage lung cancer include difficulty breathing (dyspnea), cough, fatigue, loss of appetite, weakness due to ill health and malnutrition associated weight loss, and pain. Palliative care therapies that may be used to address physical symptoms include the following approaches:1 Exercise Exercise has been shown to reduce the severity of fatigue, improve emotional well-being, and improve the ability to perform daily activities in patients with lung cancer. Studies have suggested that patients who receive physical therapy interventions earlier in their treatment are more likely to adhere to and tolerate physical activity, which has demonstrated numerous positive effects on endurance and overall quality of life.1 Nutrition Weight loss and malnutrition are associated with an increased risk of complications following surgery and can impact the ability to receive treatments like chemotherapy. Research suggests that patients’ nutritional intake, imbalances, and supplementation should be assessed early in treatment and throughout the treatment timeframe.1 Pain management It is estimated that approximately 75 percent of all cancer patients experience chronic pain, and pain is the most common symptom reported by patients with non-small cell lung cancer (NSCLC). Pain management often requires a multidisciplinary approach, including the use of medications such as non-steroidal anti-inflammatory drugs (NSAIDs), weak opioid analgesics (pain medication), and strong opioid analgesics. It is important that patients tell their doctor about any over-the-counter pain medications they are considering taking (before taking them) to ensure that nothing interferes negatively with their treatment, or causes unwanted side effects. Radiofrequency ablation and radiation therapy can help reduce pain of metastases (areas in the body where the cancer has spread), and complementary therapies such as massage and acupuncture can also provide pain relief for some patients.1 Respiratory support To support a patient’s respiratory symptoms, such as difficulty breathing and cough, several approaches are used including medication, oxygen therapy, breathing exercises, and smoking cessation (stopping smoking).1 Palliative care for psychosocial distress In addition to physical symptoms experienced by patients with lung cancer, palliative care also addresses the psychological, social, spiritual, and financial well-being of patients. Psychosocial distress has been shown to correlate to key points in a patient’s disease course, including at the time of diagnosis, at discharge after treatment, as the disease progresses, and at end of life. Patients with NSCLC, especially among those with more severe symptoms and functional limitations, commonly experience depression and anxiety. Some research has suggested that the presence of depression is an indicator of worse survival in cancer. In addition to depression and anxiety, patients dealing with lung cancer may also experience challenges with family relationships, financial issues, or child care. Patients should receive referrals to social workers, care coordinators, financial specialists, mental health professionals, or spiritual counselors, based on their needs.1 [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"]

Understanding Your Late Stage Lung Cancer

Keeping the Faith

Looking at the Positives of Having Lung Cancer - Am I Crazy?

Keeping the Faith

Looking at the Positives of Having Lung Cancer - Am I Crazy?

Keeping the Faith

Looking at the Positives of Having Lung Cancer - Am I Crazy?

Getting Your Affairs in Order

Palliative Care. What Is It and Should You Care?

Life and Breath

Do I Think About Having Lung Cancer Every Day?

Supportive Care and Palliative Treatment

Legal Documents All Cancer Patients Should Have

Making Medical Decisions That Work for You

How Much Time Do I Have, Doc?

A Tweak Here, A Twinge There

The Pain of Faking It