• Increase
  • Decrease
  • Normal

Current Size: 100%

Ed Forum 2018

Stories of Hope


From Canada - Charles Schafer: a Challenging Career Despite WM

Charles Schafer

Born in the Bronx, NY (Throggs Neck on the shores of Long Island Sound) in 1939, Charles Schafer completed his Ph.D. in Marine Geology at New York University in 1967. Soon thereafter, he moved to Nova Scotia, Canada where he worked as a research scientist at the federal government’s Bedford Institute of Oceanography until his retirement in 1995. His work brought him to many coastal areas of Eastern Canada, parts of the eastern Arctic and as far west as the South China Sea. In 1970, he participated in one leg of the 11-month-long Hudson 70 Expedition – the first circumnavigation of the Americas by a research vessel. His 2012 publication about that voyage is available in electronic form through Amazon.com or from Texas publisher Virtualbookworm.com.

Charles was diagnosed with WM in 1997.  However, through access to prior years’ bloodwork collected by his employer because of his use of SCUBA diving in his research, he was able to trace the actual start of his WM back to 1989 and a leg infection that developed while he was working on a project in Goose Bay, Labrador. That injury required a quick flight back to Halifax and treatment with a strong antibiotic.

Charles’ journey with WM has involved a range of treatments starting with several courses of 2cDa + cyclophosphamide in 1997, and culminating with a course of Bendamustine + Rituxan in the fall and winter of 2013 that brought his IgM level to its lowest ever (less than 1000) and his hemoglobin back into the normal range. Charles keeps up-to-date graphs of his blood numbers that he brings to every visit with his hematologist at the Dixon Cancer Center in Halifax. He has had a few close calls with protein leakage (Bence Jones proteins) into his kidneys that has caused permanent kidney tissue damage. The leakage problem developed at IgM levels above 5000 during the first decade of his WM but was recently evident at an IgM of about 3000, which prompted his last B/R treatment and led to a partial reversal of his high creatinine levels that will allow him to stay clear of dialysis for the foreseeable future and get on with the fun things in his life.

Charles has fond memories of Arnold Smokler and all the advice that he provided to the IWMF community during his early days in navigating the WM journey. Charles continuously reminds his Nova Scotia support group members how very fortunate WMers are to have the IWMF “watching our backs.”

Published December 2014