My mom has always been our clan’s chief information hunter and learner.
That is, until last week, when she was diagnosed with a rare cancer: Waldenstrom’s macroglobulinemia.
Mom was a medical research librarian – someone who delighted in being a generous resource for journalists like me.
I remember her describing the day in 1981 or 1982 when a reporter called her to ask for information about a newly identified disease with an odd name: Acquired Immune Deficiency Syndrome. Mom checked it out, learned about it, filtered and curated the information, then delivered it to the Miami Herald reporter, likely following up with photocopies in the mail.
She beat me to the Web, of course. In 1992, while we in newsrooms were still bound to “dumb” computer terminals on a tightly controlled Intranet, mom was putting the University of Pennsylvania Biomedical Library on the Internet and later to the World Wide Web.
By the time I went online-only in 1999, it was old hat to mom, who had taken early retirement and was on the way to important things, like earning her Master Gardener’s certification. She told me she missed the calls from reporters, many of whom had learned to search for themselves, traversing the magic Web that connects people and information.
Last Tuesday, she told us she’d been diagnosed with Waldenstrom’s. She was terrifically relieved the doctor had ruled out Multiple myeloma, the cancer that killed her closest brother. But she didn’t know much more.
“I just don’t have the energy to do the research on this one,” she said.
So the junior apprentice medical research librarian team went to work: Find, learn, filter, curate and report back, in language comprehensible to normal mortals.
My wonderful sister-in-law, Mary, went for the building blocks and found the “what” of Waldenstrom’s here.
When the oncologist said mom should immediately begin chemotherapy on Rituxan, my favorite uncle raised warning flags: He found the widely used and astonishingly expensive drug is under FDA scrutiny after being linked to dozens of deaths, as this Wall Street Journal article discusses.
Fortunately, mom has both “the public option” – Medicare – and private health insurance, so she has choices on treatment.
So I went to find the “where,” and the “how” for the best possible care. My reflex was to bring her to University of Texas’ MD Anderson Cancer Center, in Houston – not far from our home in San Antonio – where fabulous doctors successfully treated my uterine cancer in 2006. But my parents are in southern New Jersey, and that’s a long hike from Houston. Another option would be the Mayo Clinic, but the closest facility for her is in Minnesota.
On Friday, I found the Bing Center for Waldenstrom’s Research, under the umbrella of the Dana-Farber Cancer Institute in Boston. It looks to me like the best and closest option for her, at just about 300 miles and 5.5 hours, as the car flies. I will be setting her up for a second opinion and potential new patient status today.
Now here’s the part where my friends who are journalists, research librarians, and just dogged diggers can help: What else or where else should we look for? Is this the best option? What do you know?
And Boston, it looks like my mom is on the way. You be good to her, OK?
Afternote and update: Mom has always been a rebel, and proudly posted a sign in one library that said “No Silence.”
Please take that as a cue to talk among ourselves in the comments, on Twitter and in email!