When you ask people how they are doing, once you get past the pleasantries, most people will tell you that they are tired. No matter your age, it has probably been years since you met someone who truly felt well-rested. Children and teenagers are tired because of school days that start early in the morning and evenings and weekends taken up with extracurricular activities. Parents are tired of balancing the obligations of work with their responsibilities to their children. In fact, most adults of working age usually feel tired and stressed because they have to be on call constantly for work, and most people need to hold more than one job to make ends meet. Living with a chronic illness brings its own kind of fatigue, both as a result of the symptoms of the disease itself and of the treatments, on top of all the other stresses of life that make you tired. When that disease is malignant mesothelioma, the physical and emotional stress can feel overwhelming. Therefore, your mesothelioma treatment plan will also address the management of fatigue.
Cancer Is a Whole New Level of Always Feeling Tired
A cancer diagnosis is not a death sentence the way it was several decades ago; more than two-thirds of people survive at least five years beyond their initial cancer diagnosis. Despite this, cancer is a serious, chronic illness, and even when you are in remission, you might never again feel quite like your old self. Fatigue is an early symptom of many chronic illnesses; you might have started feeling more tired than usual months, or even more than a year, before you went to the doctor and began the series of tests that culminated in you getting a diagnosis of mesothelioma. (Of course, fatigue is a very common symptom, and it does not always mean that you have cancer; it could be due to any of numerous other health conditions, and it could just be due to the natural and inevitable process of aging.) Meanwhile, the most effective treatments for cancer, including surgery and chemotherapy can also leave you feeling exhausted for weeks, or even months.
Even if you are relentlessly optimistic about living a long life and enjoying it to the fullest, not being able to be as active as you were before your cancer diagnosis can be very difficult emotionally. Going through treatment for mesothelioma, or any other kind of cancer, most likely means dealing with physical and emotional feelings of tiredness like none you have ever experienced before.
Causes of Fatigue in Mesothelioma Patients
Mesothelioma, like most serious illnesses, makes you appreciate the normal functions of your body that you took for granted when you were in good health. Specifically, in order to have enough energy to do anything, your red blood cells need to transport oxygen to all the organs and tissues of your body. Most cases of malignant mesothelioma begin in the pleurae, which are the lining of the chest wall and the lining around the outside of the lungs. This results in the buildup of fluid in your chest cavity, the growth of a tumor that reduces your breathing capacity, or both. Shortness of breath is the symptom that leads many patients to undergo a series of tests that eventually results in a mesothelioma diagnosis; unfortunately, feeling tired and not being able to breathe deeply can create a vicious cycle.
A low red blood cell count, also known as anemia, can be both a symptom of cancer and a side effect of chemotherapy treatment, and fatigue is a symptom of anemia. Likewise, since damage to bone marrow is also a side effect of chemotherapy, many patients experience a low white blood cell count. This can lead to infections, some of which cause fatigue. The feeling of physical exhaustion associated with chemotherapy is temporary, as bone marrow rapidly replaces itself. Several weeks after your last chemotherapy infusion, you will probably feel much less tired than you did while you were actively undergoing treatment.
The most common surgeries to treat pleural mesothelioma are pleurectomy decortication (PD) and extra-pleural pneumonectomy (EPP); the first involves the removal of the pleurae and some lung tissue, and the second involves the removal of an entire lung. These surgeries can quickly send your cancer into remission, especially if your surgeon locally applies chemotherapy or radiation to the surgical site while you are under anesthesia, but they also mean that, with less lung tissue than you had before, you will be able to take in less oxygen per breath than you had before the surgery. This means that you will not be able to tolerate as much cardiovascular exercise without feeling tired and short of breath as you could do before you first developed symptoms of mesothelioma.
Likewise, your doctors might prescribe opioid pain medication to manage cancer-related pain, and they will most certainly administer it during the initial phase of recovery from surgery. Feeling tired, sleepy, and not mentally alert is a common side effect of opioid painkillers, but this side effect goes away as soon as you stop taking the medication.
How to Manage Fatigue During and After Mesothelioma Treatment
Doctors and other professionals who are experienced in treating patients with malignant mesothelioma also have experience helping patients cope with cancer symptoms and with the side effects of treatment, including fatigue. These are some things you can do to help manage physical fatigue during mesothelioma treatment and some actions your medical team can take to mitigate the fatigue-inducing effects of treatment:
- Doctors should prescribe the lowest effective dose of opioid painkillers. In other words, the medication dose should be just enough to control the pain; if the dose is too high, you will still be pain-free, but you will have a hard time staying awake and engaging in everyday activities.
- If fluid has built up in your chest cavity, it interferes with the ability of your lungs to expand, causing shortness of breath and fatigue. Whether or not you have surgery for mesothelioma, draining the fluid from your chest will give your lungs room to expand, and you will notice almost immediate relief.
- If you undergo surgery for mesothelioma, your doctors should only remove as much tissue as they need to in order to achieve the treatment goals, such as complete removal of macroscopic disease. You will have to get used to living with a reduced lung capacity, but pulmonary physical therapy helps a lot as far as helping you get as much oxygen as possible. You might need supplemental oxygen for a while after surgery; you will probably feel noticeably less tired with the supplemental oxygen than without it.
- If a low red blood cell count before or during chemotherapy is a major contributing factor to your chronic fatigue, your doctors may give you a blood transfusion.
- Doctors may adjust the timing or dosage of your chemotherapy infusions in order to reduce your side effects, including fatigue.
- Regardless of what kinds of treatment you are getting, be honest with yourself about how much you have the energy to do in one day, and plan to spend more time resting than you did before your mesothelioma diagnosis.
Physical and Emotional Exhaustion: A Vicious Cycle
As much as cancer and its associated treatments are physically exhausting, it is also emotionally overwhelming to receive a mesothelioma diagnosis and go through treatment. Even if you had already reached retirement age by the time of your diagnosis, getting a cancer diagnosis may require you to think more about your own mortality than you ever have before, and your emotional response to this could be anything from sadness to anger to fear.
Even if you quickly go into remission, and even if your religious faith or your sense of fulfillment in life is so strong that you have little fear of death, symptoms of physical illness often have a severe negative impact on a person’s emotional state. Some people feel emotional pain physically, but almost everyone feels physical pain emotionally.
There is not one right way to deal with the emotional stress of living with mesothelioma and undergoing treatment for it. You might find it helpful to stay connected to friends and family and to your faith community. You might also find reassurance in getting to know other families who have experienced mesothelioma and its treatment. Your medical team can connect you to support groups and mental health counselors. It can be very difficult to identify the thing that will help you see hope when you are dealing with a major stressor like a cancer diagnosis, but talking to other people who have had similar experiences might give you encouragement about finding your own way to cope. The answer is not as simple as always thinking positive thoughts; being honest with yourself and your family about the fact that you probably will not be around to see your grandchildren reach adulthood can help you make peace with your situation more than hanging all your hopes on a remote possibility that, within the next year, treatment for mesothelioma will become available that will increase survival time by decades.