Such was the case with Ann Gregory. It was slightly different with PJ because although I met her through our blogs, we became friends in real life.
We shared a disease, but you don't have to have the same cancer to have a connection.
I bring this up because of Jody Schoger, the breast cancer advocate who died yesterday. I knew she had gone into hospice after her last treatment failed, and I realized we hadn't heard from her on Facebook in a while. But still I was surprised, and incredibly saddened, when I saw the first tribute yesterday. Since then they have been flowing in.
Healthcare social media pioneer @jodyms Jody Schoger has died but she continues to inspire so many #bcsm http://bcsm.org/good-night-jody/?sf46386231=1via … @BCSMChat
She described her metastatic breast cancer recurrence on Oct 23, 2013 after 15 years of remission in this post that she wrote for Houston's MD Anderson Cancer Center, where she was treated.
"Cancer is wily. Invasive lobular breast cancer is especially so. It doesn't always cause lumps and can be difficult to image. The cancer skipped my remaining breast for better territory, landing in the opposite lymph nodes under my arm, then traveling up into my neck before traveling into my abdomen. For me, acceptance comes in moments. It isn't a steady state, but a series of overlapping realizations where each one is deeper than the last. I've yet to find a workable metaphor for incurable cancer. Cancer isn't my last stand, nor is it a battle with a winner and a loser."
Along with breast cancer survivor Alicia Staley, she formed the Breast Cancer Social Media Community (#BSCM), which included advocacy, education, a blog, and a tweet chat. Alicia wrote a beautiful blog post, Good Night, Jody, that explains it all. Jody was optimistic, determined, funny wise, a wonderful writer, beautiful, and, where needed, combative.
In early November, she tweeted: BC/BS of Texas to M.D. Anderson patients: Drop dead. This was because the insurer was eliminating coverage for some 2,000 patients like herself as of the end of the year. I thought it was a developing national story which seemed like an effort to cut off patients with pre-existing conditions, and I emailed back and forth with her when trying (unsuccessfully) through a connection to get the Boston Globe's new Stat team interested.
At the time she was also having heart problems. "The dismay is like a big rock in my stomach," she wrote me. She ended up getting other coverage but what a thing to go through at a time like that. We exchanged quite a few emails so I felt like I had a personal connection with her. As did many others.