Adjusting to the New Normal: A Myeloma Patient Story

In the early spring of 2018, Karen experienced days when she didn’t feel well. At times she felt like she was in a fog. She visited the emergency room several times as the months passed. On each occasion, they did bloodwork, but it always came back with normal results. Karen mentioned this to some of her family members, and they encouraged her to go to a different hospital to seek treatment.  

When Karen noticed a discoloration in her urine that summer, she visited her primary care doctor. The doctor saw something was off and referred Karen to a kidney specialist. The kidney doctor ran tests that picked up high protein levels in Karen’s urine. She was told she needed to see an oncologist. Karen didn’t have a chance to get an appointment to see the oncologist scheduled.

Two days later, she woke up with a bad migraine headache that felt like someone had hit her in the head with a hammer, and her vision was blurred. Karen knew she had to go to the ER. She didn’t want to bother anyone because they were at work. There was no one to call, so she took a chance and drove to the hospital her family had been asking her to go to. Good thing it was just a few miles from her home. 

Karen was seen in the ER quickly when she arrived at the hospital. They ran tests, and she was admitted to the hospital, where she stayed for a week. That week, the doctors ordered several tests and workups and closely monitored her kidney function. When they did the cat scan, the headache and blurry vision disappeared. The cat scan showed she had had a minor stroke a few years ago. Karen was not aware of this. The scan also showed a bone spur that they thought indicated cancer. The doctors suspected Karen might have some kind of cancer and told her she needed an outpatient bone marrow biopsy to confirm.

Knowing the doctors suspected cancer, she prayed it would not be so. She was focused on being released so she could attend her upcoming class reunion. The thought of the reunion and connecting with old friends brought her joy and eased some of the anxiety that she was feeling. Unfortunately, she ended up missing the reunion.

The doctors agreed to discharge Karen only if she promised to have a bone marrow biopsy. She was released and had a bone marrow biopsy, ultimately confirming the doctor's suspicion. Karen learned that she had light chain multiple myeloma and kidney disease on August 7, 2018. She had never heard of multiple myeloma, and although the diagnosis would change her life dramatically, she knew she had to accept it. 

Karen had to share the news with her daughter Kiara and the rest of the family. It was hard for Karen as she and her daughter are very close, and her daughter is very protective of her. Kiara had just recently completed college and was starting a new chapter in her life, so hearing about her mother’s cancer diagnosis was hard for her. Her daughter and close friends became her close support system when she began treatment right away.

In induction therapy, Karen experienced problems with the medications. She had to stop Velcade because it caused severe neuropathy. When she switched to Ninlaro, she got blood clots and had to stop that. She found success with Kyprolis and dex, which brought the disease under control and readied her for a stem cell transplant, which she had in November 2018. 

Throughout her myeloma journey, Karen has had to adjust to the new way of life. The many trips back and forth to the doctor take a lot of work and coordination. She could not do her laundry and care for things around the house. Karen couldn’t ride her bike, take hikes, go to a movie or show, or freely travel like she once enjoyed.

The most significant adjustment was not being able to work. The financial strain was tough on Karen. She is forever grateful for Kiara and her friends setting up a Go Fund Me page, which helped tremendously. Karen connected with other myeloma patients in an online support group, which made things easier for her. Being able to talk to others going through the same thing was just what Karen needed. She didn’t feel alone. 

Karen has been able to return to work part-time and is adjusting to her new normal. She experiences back pain when walking distances or standing for periods. She does monthly bloodwork to monitor the myeloma and kidney function. She is currently in remission. Karen advises newly diagnosed patients to fight, not let myeloma get the best of them, and know they don’t have to fight alone. She says you should be resourceful, learn about the disease, and talk with your family about it. 

If you want to hear other Black myeloma patient stories, visit www.blackmyelomahealth.org. 

You can also join our amazing Black Myeloma Health Community, which meets monthly; click here: Join our Black Myeloma Community!