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Reflecting on the pain I experienced before my diagnosis of multiple myeloma, I realized how important it was to pay attention to the related symptoms.
Many symptoms could be early warning signs of multiple myeloma. One of the most common is persistent bone pain, usually felt in the back, ribs or hips. Along with bone pain, individuals may experience fatigue, weakness and difficulty breathing.
I first noticed rib pain and sciatica in September 2016. Later that year, as I stepped onto the stage at a conference in Brazil, my body felt fragile, reminding me of the long-distance travel we had endured to get here. Even getting in and out of the car was challenging; my muscles strained from carrying heavy luggage and navigating crowded airports. The physical discomfort reminded me of the toll overseas traveling can take on a person's body.
However, it wasn't until January 2017, when I experienced shooting pain down my left leg, that I realized something was seriously wrong. I had lytic lesions throughout my body, and it was painful even to sneeze. Lytic lesions refer to areas of bone destruction that result in holes.
Multiple myeloma can also lead to a collapsed backbone in the spine, which can put pressure on the spinal cord and cause further complications. Unfortunately for me, five vertebrae quickly collapsed within weeks.
The elusive origin of myeloma remains a mystery, leaving those affected searching for answers. Deep within the bones lies the bone marrow, a vital source for creating blood cells. But something insidious occurs, transforming healthy plasma cells into malignant myeloma cells. As an architect frequently working on construction sites, it is possible that this environment may have played a role in developing myeloma. Yet, another factor cannot be disregarded — the overwhelming grief and stress from losing my mother in 2015 may have weakened my immune system, leaving me vulnerable to this disease.
The diagnosis is typically confirmed through a biopsy, an invasive procedure in which a specialized needle is used to extract a small sample of the bone marrow. This vital tissue, which produces all of the body's blood cells, is usually obtained from the pelvis. I underwent this procedure while confined to my hospital bed. My most recent bone marrow biopsy was performed in June 2023, revealing no trace of cancer in my body and bringing a wave of relief and hope for the future.
There are many notable figures who were diagnosed with multiple myeloma.
According to a new biography titled “Elizabeth: An Intimate Portrait”by Gyles Brandreth, it was revealed that Queen Elizabeth II may have had multiple myeloma before her death. A Newsweek article confirmed that she had this type of cancer before her passing. In October 2021, the queen experienced health issues that caused her to miss public appearances. In the next year, she faced mobility challenges and eventually passed away in September 2022. Her official cause of death is listed as "old age" on her death certificate. She died at the age of 96.
Tom Brokaw, aged 84, is a retired journalist and author known for his work on network news. In August of 2013, he was diagnosed with multiple myeloma. Over a year later, Brokaw announced that his cancer was in remission. It is uncertain whether he is currently undergoing any maintenance treatment. In his book, “A Lucky Life Interrupted: A Memoir of Hope,” Brokaw recounts his experience with cancer.
Geraldine Ferraro was a notable figure in American politics, known for her roles as a politician, diplomat and lawyer. She gained even more attention when she became the Democratic Party's nominee for vice president during the 1984 presidential election alongside Walter Mondale. Sadly, in 1998, Ferraro was diagnosed with myeloma and died from the disease in 2011. She had gone to Mass General in Boston for treatment to manage her pain caused by a fracture, a common complication of multiple myeloma. Unfortunately, she contracted pneumonia and was unable to recover. She passed away at the age of 75.
Other notable people include:
American Secretary of State, Colin Powell.
Sam Walton, the American businessman who founded Walmart.
Eppie Friedman better known by the pen name Ann Landers and
Mickey Hargitay, 1955 Mr. Universe who married actress Jayne Mansfield.
According to medical professionals, multiple myeloma is a daunting and incurable disease. However, proper treatment and care can be effectively managed for years. After receiving three different lines of chemotherapy (what I call healing elixirs), I am now undergoing maintenance treatment with Darzalex (daratumumab). At my most recent appointment with my oncologist, she described my condition as “boring," a welcome label in the world of cancer. My blood results show no changes, and there are no signs of cancer, not even at the cellular level (also known as minimal residual disease or MRD). This means that I am in complete remission.
Through my involvement in various support groups with fellow warriors, I have learned that individuals with myeloma can live for years while undergoing treatment. The advancement of treatments is ongoing and constantly improving, providing hope for many. In some cases, those with multiple myeloma experience remissions lasting for years. Some choose not to continue with treatment, instead finding solace in their path toward healing. The resilience and courage displayed by these individuals are a testament to the strength of the human spirit in the face of adversity.
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