Living with a Chronic Condition
Managing your multiple myeloma on a daily basis takes effort. But, with the right tools, it is possible to achieve and maintain the quality of life you desire. Partner with your medical team, be an active participant in your own care and explore the resources available. Then, make a plan and stick with it.
Your Long-Term Plan
Your plan should include components of each of these five categories. Work with your doctor to address your unique medical and personal needs.
1. Follow-up care. Your doctor should provide a follow-up schedule of appointments to gauge the multiple myeloma’s response to treatment. These visits will include a review of your medical history and a physical exam. They may also include imaging procedures, such as positron emission tomography/computed tomography (PET/CT) scans, X-rays, blood and urine tests, and bone marrow biopsy. These tests are important because if your treatment is no longer working or is not as effective as it once was, your doctor may try another therapy.
Your doctor will ask about any ongoing physical symptoms you have and recommend screening guidelines for other types of cancer.
These appointments are important because finding any disease recurrence or another health issue early is key to successful intervention.
2. Caregiving. Although you may want to do many things on your own, you will be stronger with the support of a caregiver. Your energy level may ebb and flow, so you will appreciate help with shopping, cooking, cleaning and driving to appointments.
Your caregiver can also help you stay on schedule with medications taken at home and those given at medical appointments by using a calendar or reminder tool. Managing medications correctly is essential because cancer medications are most effective when taken exactly as prescribed.
Delegate communication to your caregiver. Many organizations offer tools that make it easier to keep family and friends updated on your condition.
3. Emotional support. Do not hesitate to ask for a referral to a patient counselor, mental health professional or cancer support group (locally or online). Reach out to close friends or a spiritual advisor. Your doctor may prescribe medications to help, and you may be able to manage some symptoms on your own. Contact your doctor about excessive crying or continued feelings of hopelessness or despair. Get immediate medical attention if you have thoughts of suicide or death.
Anxiety can begin as soon as you receive your diagnosis, and follow-up exams and laboratory testing may cause scanxiety. You may begin to feel anxious as the appointment nears and stay that way until you get your results. To help manage the stress, set expectations with your doctor or nurse about when and how you will receive the results so you are not left waiting and wondering. Discuss your fears with your friends, a support group or a therapist. Stay busy with things you enjoy.
Depression is more complex than just feeling sad and can include feelings of panic, hopelessness and discouragement. It is crucial to talk with your health care team if these feelings last more than a couple of days. Try engaging in regular physical activity, breathing exercises or meditation.
Fear is a common reaction before, during and after cancer treatment. One way to combat fear is to learn as much as you can about your diagnosis and your treatment. Talk to others going through similar treatment. Support groups, both in person and online, may be helpful.
4. Healthy habits. Living a healthy lifestyle may help you tolerate treatment better, lower the risk of a recurrence or other chronic diseases, and help protect against secondary cancers.
Following a nutritious diet can help you maintain a healthy weight. Include a variety of fruits and vegetables, lean meat, low-fat dairy products and foods with plenty of fiber. Appetite challenges, which may lead to weight loss, are common. Total parenteral nutrition (TPN), a type of intravenous feeding, may be necessary to help prevent malnutrition for stem cell transplant patients who have acute Graft-versus-Host Disease.
Physical activity helps to manage fatigue and may also reduce pain from peripheral neuropathy. You do not have to create an extensive workout plan. Even walking 10 minutes a day can be beneficial.
Staying hydrated can prevent dehydration, which can worsen some side effect symptoms. Set a goal of drinking 8 to 10 glasses of water a day.
5. Palliative care. Some health care teams refer to their supportive care services as palliative care, which is not the same as hospice care. Don’t let this common misconception alarm you. Palliative/supportive care is available at any time to anyone with a serious or life-threatening illness, including right after diagnosis, whereas hospice care is generally reserved for end of life. Ask about the services that are available to you.
Getting a handle on testing anxiety
Having follow-up exams and laboratory testing may bring up feelings of anxiety, sometimes referred to as scanxiety. The feeling is understandable because the results will indicate whether your treatment is working the way it is intended. You may begin to feel anxious as the appointment nears and stay that way until you get your results. That is a lot of stress to put on your mind and body. Find ways to manage the stress:
- Set expectations with your doctor or nurse about when and how you will receive the results so you are not left waiting and wondering.
- Recognize and accept that it is normal to feel this way. Consider discussing your fears with your friends, a support group or a therapist.
- Keep your mind occupied with things you enjoy, such as reading, playing games or gardening. Staying busy gives you less time to worry.
- Try to calm your nerves with meditation or deep breathing.