The Emotional Impact of Advanced Breast Cancer

I see my physical scars before others do. The ones from my childhood, faded, but still present from when I played too hard or wasn’t looking. My C-section scars are hidden from just about everyone but I always make a point to show my boys on their birthdays just how they exited my body on those important days. We’ve made a point, to be honest, and transparent from the beginning about bodies, about body parts and about my terminal cancer diagnosis. My metastatic breast cancer scars Then, the cancer scars: The breast surgery that left a divot in my left breast and scars under both breasts and under each nipple where they literally rearranged and rebuilt my breasts; The scars where they took the 4 sentinel lymph nodes from my left side; The extensive scarring on both legs where they cut me open, drilled down each femur and jammed titanium rods inside, then the scars where the screws were affixed to hold the rods and my bones in place which adds up to 5 scars on each leg; The small scar and bump where my port resides in my chest, which can be mistaken for a freckle unless someone is looking closely, albeit a large one; and The three small scars on my abdomen where robot arms were inserted to assist my surgeon with removing my ovaries, uterus, fallopian tubes, and cervix. These are the scars that can be seen on the outside of my body, affects to my body that shows up on my skin. The unseen scars are not readily visible, yet are often much more difficult to deal with. [forumDriver id=14498] The physical toll of advanced breast cancer that is harder to see Let’s first start with scarring to soft tissue. No, no one cannot see how my tendons swell, how the ligaments are stretched because of surgeries or medication or changes to my gait because of pain, how inflammation affects every cell, how my muscles and organs are affected by the lack of estrogen. How the walls of my vagina are like a desert. How the inside of my mouth erupts into painful sores at certain times in my medication cycle and are exacerbated because of the lack of lubrication. These are often touted as side effects, but these are scars to tissues that are not accustomed to such issues and tissues that heal far slower. Pain is also evidence of the effects on soft tissue and that’s something that I have in spades. I’m 40, yet I often feel 90. In addition to the pain I live with because of the scarring to my tissues, I also live with scarring in my brain. Yes, I know that’s not the technical term for chemo brain. When I was first tested, the neuropsychological tests demonstrated that I’d lost 20 IQ points. Twenty freaking IQ points make a lot of difference. Now I’ve been able to gain a lot of them back by religiously using the app called Brain HQ, but I’m not mentally or cognitively anywhere near where I was before breast cancer invaded our lives. [native] The emotional toll of advanced breast cancer Another area of unseen scarring is the emotional scars that come with a terminal diagnosis. Also known as coping with what I’ve often called the sword of Damocles hanging above my head. The depression and anxiety I live with each day will most likely be with me for the rest of my life, so the fact that it’s still called situational is an often debated subject between my mental health providers and I. The level of depression and anxiety is pretty constant, even chronic, but I occasionally have flare-ups when a scan is coming up (aka scanxiety) or when an important date is coming up (eg, a holiday or a cancerversary) or when a friend is murdered by cancer or suffers a progression. I’m not ashamed of the fact that I struggle with these ongoing monumental changes to my life, not at all. I see a psychiatrist regularly and I take medication that helps me deal and also helps with the hot flashes that came with the sudden immersion into surgical menopause. I’m still learning how to cope and deal with the fact that I’m sad, a lot; that I often feel paralyzed; that sometimes getting out of bed is a task so gargantuan that it doesn’t seem worth the effort. Trying to find me again after my metastatic breast cancer diagnosis Another type of scarring that is probably linked to all of the scarrings above is the scars to my sense of self. This one is hard to articulate in a clear way because it is so subjective. A sense of self is linked to so many internal thought patterns, many of them instinctive and fragile and many linked irrevocably to culture and upbringing. My sense of self is somewhere, it’s just not as accessible to me right now. Before my stage 4 metastatic breast diagnosis, I had my own business and I was responsible both for managing that business, my employees, and generating new work. I networked constantly and I was busy all the time. At home, we had two children and I was tandem breastfeeding. We volunteered our time, we were members of a church, we gave donations, I served on boards, we spent time with family and we traveled. Yes, we were probably too busy and didn’t take the time to smell the roses as much as we should have. We were productive, we were helping people and life had rich meaning. Then, I heard those fateful words "You have breast cancer" and, a mere 3 months later, "You’ve actually been metastatic from the beginning." That was 2017. Making the necessary changes In response to my diagnosis, we made the changes to our lives that we felt were necessary. I closed my law practice, we accessed my disability benefits, we rented our house out and we moved to be with my family. Overnight, I had a completely different life. Overnight, I went from active to struggling to walk. Overnight, I went from a working mother to a stay-at-home mom. Overnight, I didn’t have billable hours and clients and responsibilities, except to my family. Overnight, I no longer knew what to call myself. The diagnosis of stage 4 breast cancer is life-changing The diagnosis of Stage 4 metastatic breast cancer, a terminal diagnosis, has upended all of the things I thought I knew about myself, my life, my family, the God I have trusted my whole life, and life itself. This radical change has caused me to re-examine who I am, fundamentally, as a person. Like the physical and emotional scars, I will carry all of these changes with me wherever I go, whatever I do now. Like it or not, having cancer has irrevocably changed the very fabric of everything. There are bright spots. Life is not always grim and I am slowly learning the boundaries of who I am now. I still say yes too often. Yes, to traveling. Yes for volunteering. Yes to helping people. Yes to using my energy too much. And I pay for it differently. These new scars, they are hard to get used to. Hard to live with. Hard to understand. Recognize the importance of self-care Self-care was never something that meant that much to me, frankly. Now, I am reminded, often violently, by my body that I must prioritize caring for myself. There is no longer a choice in that. I have to adjust my expectations of myself, to be kind to myself. But there is still magic and life goes on and I am still here, a person still figuring out how to do this life. Some questions to think about... Do you have scars that can or can’t be seen? If so, how do you deal with them? Do you need help in understanding how to deal with your scars? Do you know anyone who has scars, seen or unseen? If so, how do you relate to that person? Do you need help in understanding how to relate to others’ scars? [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] In the last few years, I have seen conversations about mental health come out of the shadows, the whispers, and into the forefront of larger conversations about health and medical care in general. It’s been a sea change, particularly for me, who has struggled with anxiety and depression for most of my adult life. In my twenties, I played what I think of now as mental health ping ball, utilizing short-term fixes to mask long-term problems. I found few resources available to speak honestly and openly about mental health, the challenges and struggles, and truthfully, the triumphs as well. Mental health challenges After receiving my metastatic breast cancer diagnosis in 2017, I knew that managing my mental health was going to be as crucial to the management of my disease as adherence to my medication regimen itself. It was as if all stigma had fallen away - I would now be on many other medications for the rest of my life, and it seemed far less taboo or unusual for me to experience the mental challenges that had chased me for so many years. And yet, I was surprised at the lapses in mental health care available for those navigating a breast cancer diagnosis. Mental illness is real - they are real illnesses with real symptoms and real situations that exacerbate them. Navigating my mental health Within a few days of my diagnosis, I reached out to my doctors and requested that I speak to them about navigating my mental health through some of the worst moments of my life so far. I spoke about my history of depression and anxiety and my inability to sleep, that I would lie in bed, restless and anxious, crying and worrying about what was going to happen to me, to my family, and what was to come. I was referred to the staff psychiatrist, but when I called that office, I was told that the next available appointment was not until April 2018. That was almost five months away, and I needed help now. To me, that was unacceptable. I pushed harder and reached out to other members of my medical team. At that point, I was managing the physical pain of my bone metastases, insomnia from the stress of a life-altering diagnosis, and the beginning symptoms of menopause, exacerbating my sleeplessness significantly. Treatment and support for mental health After a few weeks, I found a psychiatrist who listened to me and was available immediately. I broke down in tears in her office, the layers of stress sloughing off at last. I spoke of my lack of sleep, my pain (finally more appropriately managed by my treating my anxiety and depression for the rest of my life as well. These are the medications that will allow me to continue to live my life, in spite of any diagnostic labels I carry. Editor’s Note: We are extremely saddened to share that on Sunday, March 29, 2020, Emily Garnett passed away. We know that Emily's advocacy efforts continue to reach many. She will be deeply missed. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] Mental and physical health are intrinsically linked. Managing the stresses of a physical condition can be mentally and emotionally exhausting. Here we share 10 strategies for coping when you’re feeling overwhelmed. 1. Breathing exercises Focusing on your breath is a technique used to lower stress and anxiety. There are many different forms of breathing exercises including belly breathing, nasal breathing, and timing and guiding your breath. 2. Guided meditation Don’t let the name turn you off! There’s a lot of ways to practice mindfulness and meditation, and finding the right one for you can help slow down racing thoughts, release worries, and focus the body. There can be a learning curve with meditation, so be sure to shop around - with practice it gets easier. 3. Exercise, diet, and vitamins Emotional wellbeing is both body and mind. Though it’s important to note that these are not cures, how you nourish your body can affect the way you feel. Movement, whether high impact or low, can decrease stress and increase energy. 4. Sleep There’s no underestimating the importance of sleep. It gives your body and mind the time it needs to recharge and can increase emotional resilience. A good night’s sleep doesn’t come easy to everyone, so finding a schedule for you and even consulting a specialist might be helpful. 5. Laughter: take a break Laughter is the best medicine? Distraction in the form of entertainment or humor can help relieve the day-to-day physical and mental stress. If you’re in the midst of a stressful situation or environment, you may want to try physically removing yourself and seeking a calmer place. 6. Nature therapy You’ve probably noticed the joy that comes with taking a walk through the trees, but it may come as a surprise that natural environments really can have an impact on our minds. Being surrounded by nature can provide both an escape and a point of focus when you’re feeling overwhelmed, allowing you to focus on something bigger than ourselves. 7. Acupressure You’ve probably heard of acupuncture. Acupressure has a similar goal, to release tension, center thoughts, and focus your energy. They both have origins in Eastern medicine. Acupressure uses precise pressure and finger placement over specific points along the body that are known to target stress and anxiety. You can try doing it yourself, or ask a friend or loved one to help you. 8. Thought exercises We all have days when negative thoughts consume us. These techniques can help to redirect these thoughts. Some exercises involve journaling, affirmations, gratitude, and list-making. For example, you might make a list of your strengths or repeat a positive mantra. 9. Seek out support Even with these tools in hand, there will be times when it’s difficult to cope on your own. Support can come in lots of different forms. Family, pets, friends, online communities, meetups and support groups - all of these resources can provide a strong foundation for the times when you need reinforcements. 10. Volunteer to help others Reaching out beyond your social network to help out others can give you a sense of purpose. It allows you to use your skills and energy to make a difference in someone else’s life. Volunteering can take many forms, such as letter writing, donating, or offering your time to a local nonprofit. Further resources Sometimes coping becomes impossible to manage on your own, even with the help of loved ones. There is professional help available: Psychotherapy Medication Resources [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"],Mental health is the range of thoughts, emotions, and behaviors that affect your well-being and how you relate to others. Just like good physical health, good mental health is vital for daily functioning. Good mental health allows you to cope with the stresses of life and achieve your full potential.1 Mental health may vary from person to person and change with time. Everyone can be affected by mental health challenges such as stress, grief, and trauma. While severe challenges may require help from a professional, they often improve or pass with time.2 On the other hand, some people have diagnosable mental health conditions. These conditions are diagnosed and treated by medical professionals. They often involve serious changes in:2 Thinking, mood, or behavior Ability to engage in daily social, work, or family activities Who gets mental health conditions? Having a mental health condition is not something to be ashamed of. These conditions are common around the world. Nearly 1 in 5 adults in the United States have a mental health condition. An estimated 1 in 6 American children between the ages of 6 and 17 have a mental health condition.2,3 What causes mental health conditions? A mental health condition typically is not the result of a single event. Doctors believe genes, environment, and lifestyle interact with life events to cause a mental health condition to develop. A stressful job may be a contributing factor for some, while trauma might be for others.2,3 Not all people who have such events or situations develop a mental health condition. But if you do have a mental health condition, it is not your fault.2,3 Common mental health conditions Depression Depression may also be called major depressive disorder. Depression is more than feeling “blue” or simply sad. Depression is a serious medical condition that affects how you feel, act, and think. Symptoms vary widely and may include one or more of the following in an episode that lasts longer than 2 weeks:4 Low moods Feelings of worthlessness Hopelessness Sleep problems Generalized anxiety disorder Generalized anxiety disorder (GAD) is anxiety or worry about multiple things, most days, for at least 6 months. This fear and anxiety can cause major problems in life, including social situations, school, and work.5 Panic disorder Panic disorder is a type of anxiety disorder in which a person has panic attacks. Panic attacks are brief episodes of intense fear. These may happen right after a certain event or situation makes you feel especially stressed. Sometimes it seems to happen at random.5 The physical symptoms of a panic attack can include:5 Pounding heart Sweating Difficulty breathing Shaking Obsessive-compulsive disorder Obsessive-compulsive disorder (OCD) is a condition in which people may perform repetitive behaviors (compulsions). They also may have constant and uncontrollable thoughts or urges (obsessions).6 Eating disorders Eating disorders are serious illnesses that cause severe disturbances in eating behaviors and related thoughts and emotions. There are 3 main types:7 Anorexia nervosa: An intense desire to lose weight by avoiding or restricting food, or by compulsively exercising Bulimia nervosa: Frequent episodes of excessive eating followed by harmful efforts to avoid weight gain Binge eating disorder: Frequent episodes of losing control over eating, usually resulting in weight gain Schizophrenia spectrum and other psychotic disorders People with schizophrenia spectrum disorders and other psychotic disorders cannot distinguish between reality and their hallucinations and delusions. Hallucinations are when someone sees, hears, smells, tastes, or feels things that do not exist outside their mind. A delusion happens when a person has an unshakeable belief in something untrue.8,9 Bipolar disorder Bipolar disorder (type 1 or 2) involves an extreme fluctuation between moods. These episodes may last at least several days, with the person moving between elevated or depressed moods.10,11 The elevated moods are called mania. Mania can make a person very active and cause them to feel elated or “high.” It can also cause them to become more irritable or engage in risky behaviors.10,11 Post-traumatic stress disorder Post-traumatic stress disorder (PTSD) may develop following a shocking, scary, or dangerous event or series of events. PTSD may cause:12 Repeating thoughts of the trauma Flashbacks Nightmares Trouble performing daily tasks Severe impairment Sleep disorders Sleep and mental health are closely linked. People living with mental health conditions are more likely to have problems with the quality and amount of sleep they get. And sleep disorders like insomnia increase the risk of depression, anxiety, and problems focusing or making decisions.13 Substance use disorder Substance use disorder is dependence or addiction to specific substances, such as alcohol or drugs. It often co-occurs with other mental health conditions. Substance use disorder should be treated at the same time as any other mental health issues.14 Personality disorders People with personality disorders have emotions and behaviors that depart from social norms. Their emotions and behaviors tend to be inflexible and unable to respond to life’s demands. These disorders cause issues in relationships and other important areas of life.15,16 Chronic illness and depression Rates of depression are much higher in people with chronic illness than in the general population. The reasons for this may include:17 Problems managing daily tasks Increased financial strain Chronic pain Feeling isolated Loss of function or ability to work Stigma, when people view you in a negative way Drugs for treating illness or condition may affect your thoughts and mood Treatment for mental health conditions Many mental health conditions are treatable and far more common than you may think. Treatment depends on the mental health condition and what is best for each person. Options include:3,18 Talk therapy Medicine Learning positive coping skills Behavioral change plans Social programs Support groups Hospital admission for daily monitoring and increased care These treatments may be applied together, and there may be other options for you. Though there are no cures for mental health conditions, there are treatment options that can help you live well. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] This may sound like the most trivial, dumb thing I’ve ever said...but, my dogs are fighting and it just feels like the final straw. Pets Our pets, fur-babies, animals, family members are vital, vital, to our daily lives. At least mine are to me. A constant source of comfort and companionship, my dogs are my babies, as much a part of my life as any of my friends. Who lays with me after chemo when I feel I can’t move? Who cuddles up next to me when I’m alone...or even when I’m not? My dogs do. My dogs are my most faithful companions, always there, always with love. It is not an exaggeration to say that I love my dogs more than I like most people. Life with metastatic breast cancer Living with metastatic breast cancer, we tend to feel more bad than good. This is really a hard aspect of this life to try explaining to people. Sure, we may look great... in fact, chemo has my skin looking better than ever. Weird, but true. Physically? It is all I can do to make it through a workday. Making plans for after work has become an automatic no for me and weekends aren't much better. It is completely difficult, if not impossible, to make plans more than a week in advance. Having to cancel plans is even more disheartening than not making them to begin with. I don't think it's an exaggeration to say that a majority of MBC patients spend a lot of time at home. And who do we curl up with for comfort at home? Our pets. Now, I am an admitted animal rescuer. I feed every stray I see and am known to take in those that cannot be rehomed. Dogs, cats, rabbits, sometimes even guinea pigs or other critters. I am a bleeding heart animal lover. It pains me to see those ASPCA commercials on TV, the sad eyes of the pets left behind and unloved. If I could, I'd buy some acreage and open an animal rescue to take them all. Of course, this is not feasible and living in a home filled with animals would not be safe or healthy for someone with a compromised immune system such as myself. You won't see me on an episode of Animal Hoarders just yet! [native] Pets and terminal cancer So what does having pets have to do with having terminal cancer? Comfort. Stress relief. Companionship during the most isolating time in anyone's life. I have three, small dogs. One of them, my oldest, has been with me since the week before my initial diagnosis of breast cancer in 2009, then at stage I. During my first round of chemo, my bilateral mastectomy, ten years ago, this dog never left my side. Not much has changed in that regard since. Cancer is a very lonely disease. You realize quickly that life goes on around you while you are stuck in place, dealing with this really traumatic situation. Even those of us with the best support systems, often find ourselves alone - and that's okay. I would never want any of my friends or family to put their lives on hold. I do, however, expect a certain level of understanding from them that in a lot of ways, my life is in stasis. Pets provide a certain level of companionship that we so desperately need and may not be able to get elsewhere. Depression and MBC When I say my dogs fighting feels like the final straw, what does that really mean? It doesn't have anything to do with my dogs exactly. After living with MBC for over five years now, I have found myself down a deep, dark, spiral of depression. This is not uncommon and I don't feel unique in this feeling. In recent months, I have had health setbacks, I've lost some really close, truly phenomenal friends to this terrible illness, and it has been unbearably hard to cope with everything. I feel like I'm doggy paddling in a riptide, struggling to keep my head afloat. When I do leave the house, it's the mask I wear that people see. The smile doesn't reach my soul. A temporary feeling I know, for me, this is a temporary feeling. I have been here before and will likely be here again. You can't ride the cancer roller coaster and not dip into this dark space at times. For the time being, all I want to do is go home, sit on my couch with a book and a cup of tea, and curl up with my dogs. But guess what? They are being jerks right now and I can't even enjoy that solace. For whatever reason (mercury is in retrograde, right?) they have decided now is the time to act like they are on a mission to destroy each other and it's exhausting. What is normally a comfort is just added anxiety, a flick of ash on dry brush. Obviously, I will be waiting out the current derision until it blows over, but dang if it doesn’t feel like just one more thing to deal with right now. Thankfully, I also have cats and they seem to love me right now. I'll be looking for some purr therapy as we all adjust our attitudes. Until they go back to being cat-ish and ignore me...silly human. Editor’s Note: We are extremely saddened to share that on Saturday, September 12th, 2020, April Doyle passed away. We know that April’s advocacy efforts continue to reach many. She will be deeply missed. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"],There is a lot of focus these days on surviving breast cancer. And many people do get cured. If your cancer is found early and hasn’t spread, you have a 99 percent chance of beating the disease.1 However, there are other types of breast cancer that will never be cured. When a friend dies from the same disease you have, you can feel guilty and unworthy of being the one to live. This complicated set of emotions is called survivor’s guilt. It affects people who survive natural disasters, wartime, and other traumatic events that kill many people.2 Statistics on metastatic breast cancer An estimated 155,000 American women and men live with metastatic breast cancer.3 Also known as Stage 4 cancer, metastatic breast cancer means cancer cells have traveled through the bloodstream and created new tumors in other parts of the body–for example, the lungs, the liver, the bones, or the brain. Stage 4 breast cancer cannot be cured, but people can take medicine to keep it at bay. Still, only 22 percent of people with the disease live for 5 years after diagnosis.3 For those who do, for the rest of their lives, they have to take medicine and undergo body scans to catch the cancer if it comes back. Why do we have survivor’s guilt? Survivors coping with guilt often feel like they have to justify their existence or that they don’t deserve to have lived. “These feelings can come out anytime someone is looking at issues of fairness,” according to Susan Glaser, a clinical social worker at Memorial Sloan Kettering Cancer Center. “People who have experienced trauma are comparing themselves to others. Survivors look at other people who did everything ‘right’ but died anyway and try to make sense of that.”4 What does survivor’s guilt feel like? Survivor’s guilt can show up in different ways for different people. For example, you might feel guilty during school events or important milestones when you know a dear friend doesn’t get to see her children at these moments. Or you might feel that you are not sufficiently filled with gratitude for everyday life the way some people can be after experiencing a life-threatening event.2 There are a range of ways people experience the feelings of survivor’s guilt. Here is a list of emotions that some people feel.2,4,5,6 But there is no “right” way to experience emotions and struggles, so you might not share any of these and feel a whole separate range of emotions instead. Feeling guilty that we had an easier treatment regimen than others Feeling guilty that our cancer was caught earlier than others Feeling guilty that our cancer responded to treatment better than others Feeling guilty that we are a burden to others during treatment Feeling guilty that we aren’t staying positive and being graceful in battling cancer Feeling guilty that we aren’t there enough for someone who was there for us Feeling guilty that we passed on cancer genes to our children Feeling guilty that we aren’t enough of a cancer advocate Feeling guilty that we are not living the best life Feeling guilty for being praised as strong or brave, when we feel others were more burdened Feeling guilty that we are not doing enough to help others Feeling unworthy of being alive compared to others Managing survivor’s guilt? Mental health professionals recommend labeling the different emotions that get mixed into survivor’s guilt.2 Recognizing and feeling each emotion can help you take steps to manage and move through them. The main emotions in survivor’s guilt include:2 Sadness Empathy Grief Anger Anxiety or fear Pressure In general, it is helpful to find times when you can express your feelings and people who are understanding and will be able to listen. It is also important to know ways to help yourself feel better when you are very sad, angry, or anxious. Try not to be too hard on yourself and recognize that your feelings may change from day-to-day. It is best to be honest about how you are feeling and to find people you can share with.2 For some people, finding ways to give back and help others in need helps them find meaning in survival. Seeking counseling and working with mental health professionals or grief counselors can also help you manage the pain and guilt that can come with cancer survivorship. Have you ever experienced this? If so, what are things that have helped you cope with survivor's guilt? [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"]

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The Scars Seen & Unseen from Metastatic Breast Cancer

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What is Survivor's Guilt and How Can I Manage?

The Underutilization of a Social Worker in an Oncology office

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Positive Attitude - How Important Is It Really?