Saturday would have been a nice day for a walk if a spoilsport named Larry hadn’t come to town.
The local chapter of Myeloma Canada had scheduled its eighth annual Multiple Myeloma March at Quidi Vidi Lake in St. John’s, but organizers knew by Thursday afternoon that wasn’t going to happen because of the pending hurricane.
The walk will take place next Saturday, Sept. 18, with registration starting at 9 a.m. at the Quidi Vidi gazebo (bandstand).
“A lot of people who are attending this march are travelling in from out of town, and we have many people that participate in the march every year who are immune-compromised or have health problems going on,” Tina Soulier said during a sunny Thursday morning interview at the gazebo. “We have a lot of patients themselves, and we want to be mindful of the safety of everybody involved. So if we have no rain but we still have high winds, it may not be an ideal situation or conditions for someone who may be a little off-balance to begin with.”
Soulier’s mother, Barb Skinner, has multiple myeloma, a type of blood cancer that can cause myriad problems (hence the term “multiple”).
Skinner was all set to chat about her condition, but ran into some bad news earlier in the week. The myeloma was flaring again, and she had to start another round of chemotherapy on Wednesday.
“It’s been a huge change in her life. It’s been really stressful, it’s been very emotional, there’s been a lot of ups and downs,” Soulier told The Telegram.
But her mother remains optimistic since her diagnosis four years ago.
“Mom is the most positive person you’ll ever meet,” she says.
“She truly, truly believes and lives day by day. Trust the doctors day by day. They’ll tell me what I need to do, and we’ve stuck to everything.”
Dr. Debra Bergstrom is a clinical hematologist at Memorial University of Newfoundland.
“There’s not really a nutshell with myeloma,” she said when asked to briefly explain what the disease is all about. “That’s the problem. It can be very complicated for people to understand. And what makes myeloma complicated as a disease is the fact that it can have so many presentations and so many effects.”
Specifically, it’s a cancer of the blood’s plasma cells, which form when the body needs to produce antibodies and then die off again. With myeloma, they don’t die and continue to reproduce, causing a domino effect that can affect many different organs.
Because they usually form in bone marrow, they can crowd out other blood cell production, which leads to anemia and a compromised immune system. Some proteins they produce can also wreak havoc on the kidneys.
The renegade plasma cells can also upend the balance between bone-destroying and bone-building agents in the body, causing bone weakness and even holes in unusual areas.
That’s what finally clinched it for Skinner in 2017, after months of getting colds and infections and feeling fatigued.
“She’s a knitter and a sewer and a crocheter, and she was sitting one night doing her work and she sneezed, and she felt a pop in her collarbone,” Soulier explained. “She had a lot of pain, and then she noticed later she had a drooping of her shoulder.”
One silver lining of myeloma is that once a person seeks help, it can be readily diagnosed by testing for an overabundance of the cells in question.
Skinner found out later the same day what she had.
The most intense treatment Skinner went through was a stem cell transplant. Before the procedure, she’s given a high dose of chemotherapy that zaps all the blood cells in her marrow so the stem cells can reproduce a fresh batch.
Bergstrom offered a useful anagram for those wondering if they may have myeloma: CRAB. In other words, high blood Calcium (from bone deterioration), Renal (kidney) dysfunction, Anemia, and Bone pain and weakness.
Soulier says she and her parents look at their plight stoically.
“The way I always look at it is, life continues on around you,” she said. “The families keep doing what they’re doing, and she has her social life. Life just happens around you.”
And Soulier’s young daughters give their grandparents a special reason to carry on. They often serve as primary chauffeurs when Soulier and her husband are tied up.
“I really think Lindsay and Liviya are a big part of what keeps her going.”
Peter Jackson, Local Journalism Initiative Reporter, The Telegram