Meet Activist GrannyBarb Lackritz
By Nancy Keene
Barb Lackritz, mother of three adult children, had worked as a speech
pathologist for 30 years when she was diagnosed with B-cell chronic
lymphocytic leukemia (CLL) in 1989. She was an information gatherer from
the day of diagnosis and dove into research both in print and online. She
says, "I tell doctors that people like me can be their strongest ally or
their worst nightmare. Since I pick my doctors carefully, I have had some
Lackritz's disease did not follow the typical indolent course. Within two
years, her white counts had reached 100,000, her lymphocytes were 99%, and
her red cell counts were low. Her lymph nodes swelled, and she started
having night sweats. After more research, she started on fludarabine. Six
courses later, she was in remission.
While Lackritz was watching her counts rise and researching the disease and
treatment options, she promised herself that no patient with her disease
would ever have to endure the horror of feeling alone if she could prevent
it. Lackritz, known as GrannyBarb on the Internet, started a web page for
others with CLL and was a regular participant on CANCER-L, one of the first
listservs hosted by ACOR (Association of Cancer Online Resources).
As her website grew, she found another leukemia site built by Art Flatau,
an AML survivor. Lackritz and Flatau decided to combine their sites. They
now run the world-famous leukemia site known as "GrannyBarb and Art's
Links." This huge, accurate, and user-friendly site describes the
various adult leukemias and contains information on treatment options, genetic
information, links to the best sites on the Web, a site map, and Lackritz's
and Flatau's personal stories. The two share a deep friendship and a passion
for accurate information. Lackritz says, "Art is phenomenal. We constantly
communicate and tend to see things the same way. In all these years, we've
never had an argument."
While Lackritz continued to help people with CLL feel less alone, her own
cancer returned in 1994. This time, the cancer had spread to her lungs and
sinuses. She went on fludarabine and cytoxan and researched transplant
options. Meanwhile, the growth of online discussion groups exploded.
Cancer-L and HEM-ONC divided into dozens of cancer-specific groups. The
numbers of people with cancer who communicated through ACOR swelled into
the tens of thousands. Lackritz administered several of the lists including
CLL and HEM-ONC. She answered thousands of email questions and talked on
the phone to innumerable people with cancer.
In 1996, Lackritz chose to have a peripheral blood stem cell transplant at
M.D. Anderson Cancer Center in Houston. Her insurance company, however,
refused to pay for it. While the battle over payment raged, Lackritz went
to Dana-Farber Cancer Institute in Boston for a second opinion. When she
arrived, the oncologist had spoken with one of his colleagues who was a
member of HEM-ONC, and had taken the time to download and read
"GrannyBarb's Story" at the leukemia links site. Their initial conversation
lasted three hours, and Lackritz remarked, "I felt I had found a doctor
whom I could trust to answer my questions honestly and who deeply cared
about his patients. He answered all of my questions, and I was more
comfortable with the proposed program than I could have believed." After
serious bouts with pneumonia and more chemo to get the cancer into
remission again, Lackritz had an autologous bone marrow transplant at
Dana-Farber in June 1997.
During her hospitalization, her online friends rallied around. Those who
lived in Boston brought food, jokes, and a laptop and provided free local
Internet access. People whom Lackritz had known on the Internet for years
came by to visit in person. Online friends sent hundreds of cards and good
wishes. Despite some post-BMT side effects, Lackritz recovered with the
love and support of her family and friends.
Lackritz continues to make good on her promise. The ACOR CLL list she
administers now has over 1,600 members while HEM-ONC has over 700. Lackritz
and Flatau continually update and improve the Leukemia Links site.
Lackritz is a member of the board of directors of ACOR and the CLL
Foundation. In March 1999, she was appointed to the National Institutes of
Health Director's Council of Public Representatives (COPR). She is just
completing a book on adult leukemia that will be published by O'Reilly &
Associates, Inc.'s Patient-Centered
Guides series in early 2001. Lackritz says, "What I receive from my
service to my fellows is so much more than I give. I have met so many
phenomenal, loving, brilliant people all over the world, and we help each
other. I feel blessed."