Understanding Your Late Stage Lung Cancer

Okay, this post is probably going to have a lot of people looking at me and thinking I have gone stark-raving crazy. But, here goes anyway! What would life without cancer be like? I participate in a forum whose participants have all kinds of different cancers. Today, a post was made that asked, "Do you get wrapped up in thinking about what might have been if cancer hadn't come?" The person who asked the question is livid that she has cancer. It was interesting that she asked that question when she did because just yesterday I was thinking of all of the positive ways lung cancer has impacted my life. And, if I can only find them, I had earlier made a list of the ways that I am lucky, in spite of and maybe because of, my diagnosis. I hope no one calls out the men in white coats to take me to a padded room. I would never WISH to have lung cancer or any other life-threatening disease. However, I do have it and no amount of wishing I didn't will change that fact. Counting my blessings I choose to look at the ways lung cancer has enriched my life. It starts with a closer relationship with my family. I was humbled and amazed when my husband stepped up to the plate when I was sickest and took control of everything - grocery shopping, cooking, taking care of me. My independence and self-reliance have ensured that he never needed to take that role before I got sick. He hit the ball out of the park though when he needed to and that meant the world to me. I have made friends within the lung cancer community that I would have never met had it not been for us sharing this disease. I wouldn't trade some of the friendships I have made for all of the money in the world. Of course, I shed many a tear when we lose people to this disease that we've come to love, but my sadness is tempered by the good memories I have of them. Taking the time to really enjoy the beauty of life Before I was diagnosed, my life was busy. I rushed from one place to the next. I never stopped to rest and reflect, to enjoy a new flower blooming or how the sunlight beams through the trees onto the nature trail behind my house. I had to quit working because of my cancer, but boy oh boy, do I love retirement and its slower pace! (I have to admit that I do not love the change in financial status that retirement brought, though.) I have gotten to go and do things that I would never have gotten to do if it wasn't for cancer. We rarely traveled before I got sick. We as a couple still don't, but I have gotten to go to many cities I always wanted to see. I usually don't have a lot of time to sightsee, but try to make the most of the spare time I have. Finding happiness from within Before I was diagnosed with cancer, I had a grant-writing business that I could have really grown if I had been able to make myself stand in front of a group and speak. I tried to do it, but I just couldn't. Lung cancer has somehow allowed me to face those fears and now I actually enjoy getting in front of a crowd and telling my story. I feel so blessed on this journey. I always want to share my hope with others. I think I started liking myself better. I am happier and far more content. My faith has grown exponentially. And, while I list it last as a blessing that has accrued to me since my diagnosis, it actually is the very most important of all. Without it, I doubt I would be able to face a scary diagnosis with the calm, peace, and joy that I have today. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] 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}}:"] 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"]

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