Non-Hodgkin Lymphoma Survivor Copes With Coronavirus Pandemic
Phyllis Alsterberg hasn’t left her home in New York City much since the coronavirus outbreak started because she has a weakened immune system and she’s worried about getting sick. But she recently followed her doctor’s advice to keep an appointment at the office, even though that meant being near other people in the waiting room. “It made me a little nervous,” she said. She did everything she could think of to protect herself. When she got back home, she stripped off everything she had worn and washed it.
Alsterberg was recently treated for non-Hodgkin lymphoma, a type of cancer that starts in the white blood cells, which are part of the body’s immune system. In this type of lymphoma, the white blood cells aren’t normal and don’t help fight infection the way they should. Its treatment can also increase the risk for infection. She also has several other health conditions which can weaken the immune system and put her at higher risk for getting COVID-19 and other infections. If she does get sick, it may become very serious and it may be harder for her to get well.
She says it’s been tough not visiting with her daughter and young grandsons, who are 2 and 7. They live just on the other side of Queens, but she hasn’t seen them in person since January. They talk and video chat to stay in touch. “Being separated is hard,” she says. “Sometimes I put them on speaker phone and just listen to the chaos in their house.”
Alsterberg says she’s coping with the coronavirus pandemic the same way she coped with her cancer diagnosis and treatment. “I went right back into survival mode. I’m keeping a positive outlook and I’m following my doctor’s directions. What happens from here is out of my control; it is what it is.”
From stage IV to complete remission
Alsterberg has been managing her autoimmune and other health conditions for most of her adult life. But in spring 2019, she began having more problems. During May and June, her fibromyalgia flared up, she developed a sinus infection and then had an infected tooth. She now realizes these were probably warning signs of non-Hodgkin lymphoma, but at the time she thought they were caused by her other health conditions. She went to the doctor, but still wasn’t better by July. When her neck began to swell, her boyfriend realized something must be really wrong and called an ambulance.
She was admitted to the hospital and had a series of tests. She was diagnosed with stage IV diffuse large B-cell lymphoma, which tends to grow quickly but often gets better with treatment. It was stage IV because Alsterberg already had hundreds of tumors and they’d spread to her lungs, kidney, liver, and spleen. According to her doctor, there was little chance of remission – and Alsterberg would be in treatment for the rest of her life.
In September she started a chemotherapy regimen called R-CHOP and spinal injections of methotrexate. She had side effects including fatigue, body aches and pains, hair loss, and chemo brain – trouble with thinking, memory, planning, and finding the right words that people sometimes get from cancer treatment. But she was determined to fend off negative thoughts.
When her hair began to fall out a few weeks into her treatment, she decided to cut off the rest. “I walked into the first barbershop I saw, pulled off my scarf and said, ‘Ok boys, who's shaving me down?’ A young guy, Michael, came running from behind me and said, ‘Please, it would be my honor.’ We chatted and when I went to pay him he said, ‘Please just get better!’ I hugged him fiercely and we took a photo together. I gave him a five-star rating on Google and our photo now has over 42,000 views.”
During this time, Alsterberg found comfort in prayer and in knowing that other people were praying for her, too. Friends and friends of friends prayed for her and added her to lists and chains and groups. “Ultimately, I would say there were and are thousands of people praying for my health and recovery,” she said. “I thank them all. I'm not a religious person, but I’m spiritual. All that energy and intention being released for my benefit, I have no doubt added to my healing. I also believe in a higher power and feel somehow I was touched.”
After her second-to-last treatment, Alsterberg’s PET scan came back clear. The tumors were gone and she was in complete remission. She had a new prognosis – full recovery.
Life lessons
The best thing to do is to stay positive. If you’re going to put your body through this and get better, do it with your whole heart and soul, otherwise you’re defeating the purpose.
Alsterberg says she’s learned a lot from her bout with cancer. “The best thing to do is to stay positive,” she says. “If you’re going to put your body through this and get better, do it with your whole heart and soul, otherwise you’re defeating the purpose.” Her advice:
- Choose a hospital where you’re comfortable and a doctor you trust.
- Follow your doctor’s directions. Do not think you know more than they do. “I’m a tattoo person, but my doctor told me ‘no more tattoos’ so I won’t get any more. I have to respect her knowledge and wisdom.”
- Don’t hesitate to ask for help and accept help when it’s offered. “I had a really fantastic support system and that helped me. My partner Steve cared for me through the whole thing: shopping, cooking, and cleaning. Friends and family visited and cheered me.”
- Surround yourself with good people who care about and love you. Don’t push them away. Stay upbeat and positive. Don’t wallow.
- Join a support group with people who understand what you’re going through, so you are not alone.
- Find a therapist to help you understand what’s going on mentally so you can cope physically.
Alsterberg says she often repeated the Serenity Prayer to herself, and finds herself repeating it again to help her cope with concerns about coronavirus and COVID-19: “God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”
A note from the American Cancer Society:
These resources may help you, your family, and caregiver connect with others and cope with changes during the coronavirus pandemic:
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