Finding Soulmates Through Blogging About Blood Cancer (Part 2)
Read Part 1 of this series from Ronni Gordon, Solidarity and Sorrow: The Mix of Being in a Blogging Community.
Shortly after I started my blog in 2008, “PJ” messaged me. She said we were doppelgangers or doubles, and she gave me the link for her blog.
We were both runners, we both had three dearly-loved children of roughly the same age, and we both were treated at Dana-Farber for the same cancer – acute myeloid leukemia, or AML.
We competed about who had had the worst and most: the most bone marrow transplants (I won with 4-2), most falls (we lost count), skin cancers (don’t know) worst rashes (hers) and most teeth lost (me, 13-4). Then there was the too-many-to-count column: pills swallowed, tests taken, specialists seen. We made light of these ordeals, using humor as an antidote to the pain, the anxiety, the fear.
We lived near enough to meet in person, drinking good, strong coffee, making plans. PJ – aka Patricia Jempty– was funny even in the way she named her blog: The Plog.1
When she fell down, she got up
She loved reading so much that she had a separate blog called Word in the Woods, subtitled, Ramblings, Ruminations, Running Commentary. She listed her interests as "accumulating knowledge, plate tectonics, stem cell transplants, reading, making soup, staying alive."2
Her husband, Marty, wrote on her blog, "Patricia had a thing for the color orange long before Netflix decreed it cool; she also liked shoes, earrings that matched her clothes and a good cocktail."2
When she fell down, she got up. Through the Leukemia and Lymphoma Society's Team in Training, she ran a good part of the New York City Marathon, fell down, got up, and kept on running.
In the spring of 2014, she wrote a string of blog posts about feeling like she was trapped in the wrong body. She had a horrible case of graft-vs. host disease – trouble with her eyes, an almost unbearable rash, and weakness caused by caused by the prednisone prescribed to control the GVHD.
Opening yourself up to sorrow and reward
She went to yoga, toppled over, and got up. To fight malaise, she colored her hair and got a manicure. I never understood if she had relapsed again or whether the GVHD had gotten out of control, but she went downhill quickly. Treatment wasn’t an option. She went into hospice. She died on June 28, 2014.
When I learned she had died, it was hard to separate out how sad I was to lose a friend, how bad I felt for her family, and how worried I was that it could happen to me.
When you join a community of people blogging about illness, you open yourself up to sorrow, but you also reap the many rewards.
She had recommended other blood cancer blogs to follow. She had called us a sisterhood. There were six of us. Only three, including me, remain. The other two have gone on with their lives, and I enjoy following them on Facebook.
Dori died a few years before PJ, and Ann died about five months after.
Ann's request: Hold on to hope
Ann was diagnosed at 32, gone at 40. She survived ALL, or Acute Lymphocytic Leukemia, getting a transplant, relapsing, and having another. Then she got a squamous cell carcinoma on her tongue. She had surgery on her tongue, but the cancer spread to her lungs and to her spine.
She didn't complain. She wrote about her love of gardening. She wrote about her cat. She wrote about going back to school, moving into a new house, dreaming of having children, being a team with her husband, Chris.
When she died, he asked readers of the blog to hold onto hope.
“Some have come to this blog just like we did to others. In a search to find someone who beat the odds,” he wrote.3
“Please realize that your experience doesn't have to mirror ours, in the sense that despite our best efforts we stepped on almost every landmine that Ann's biology could think of."3
“My message is simple, Mr. or Ms. hypothetical transplant patient. Don't give up on yourself because Ann has died. Go back and look at all the things she accomplished because she never quit even when the odds ran against her. She made the most of her life despite the obstacles biology placed in her path. Never give up on yourself and don't give into despair."3
These were wise words, written at a time of sorrow.
What type of blood cancer are you or your loved one diagnosed with?