of metastatic breast cancer. What would have been her 62nd birthday is coming up at the end of this week. Like many of us who were privileged to know her, I am still reeling from her loss.
It still hurts too much to talk at any length about how much our friendship meant to me. The photo I have posted here is from a conference we attended together in 2011. What you don’t see in the photo is me, sitting just to her right, delighted after months of a flourishing virtual friendship to have met her in person and indeed to have shared a hotel room with her at this conference. My heart aches and my eyes fill with tears just typing these words. I have to stop for a few minutes now to weep, again.
What I want to say is that, if you are looking for an example of how to be in this world, you need look no further than to follow Jody’s example. No one occupied the community of breast cancer awareness and advocacy with more genuine kindness, compassion, and clarity of vision than Jody. She offered empathy and support to all who needed it, at any and every stage of breast cancer and treatment, without judgment. She accepted everyone with an open heart, wherever they were at in dealing with their experience. When she shared information, you could be certain it was well-researched and based on scientific evidence. She was never shrill. She believed in research. She did not countenance the ubiquity of pink merchandising or the marketing of breast cancer as some kind of happy pink sorority. Nor did she waste time pounding on doors that were closed to genuine awareness. She did not suffer fools, but welcomed open minds and hearts. She believed that knowledge is power.
I also want to say that, however deeply any of us in the breast cancer community mourns Jody, her sister Megan, her husband Steve, her extended family, and her friends in the Texas community where she lived, miss her in ways we cannot fathom. So, remember them, too, when you think of Jody.
To honor Jody’s memory, we can do no better than to try to act like her, each in our own small way.
I want to share some of her words, from a status update she wrote on Facebook, off the top of her head, for #MetsMonday in March of 2015:
“My thoughts on #MetsMonday. We need:
1) more funding for intelligent, targeted research that builds on what already exists. Not every research institution needs to re-invent the wheel.
2) more cooperative studies of metastatic disease with the leading cancer institutuions
3) real data management where new cases of metastatic [breast cancer] are documented. Most figures existing now are extrapolations from SEER data. So after all this time of building awareness there is no accurate snapshot on metastatic illness.
4) better coordination of existing social services for women without means: they are getting lost between the cracks! There are too many single mothers with metastatic illness who can barely make ends meet.
5) a way of guaranteeing that every woman diagnosed with metastatic disease understands what clinical trials are available to her within a (25, 50, 100- etc.) mile radius BEFORE she initiates treatment
6) a supportive/palliative care consult with the newly diagnosed woman/man with mets to establish a baseline for quality of life measures, what supports might be necessary, and get those coordinated asap
7) a yearly report (the newly established Metastatic Breast Cancer Alliance??) that summarizes not only the year’s best research in ER/PR+ disease, TNBC, IBC, HER2+ but also what is happening in immunotherapy and targeted therapy clinical trials. Yes, it’s a big job and no, NO ONE is doing this. Mets patients pick up their information piecemeal….. a little bit from here, a little bit from there.
8) a continued educational and outreach effort that raises REALISTIC awareness about breast cancer and the nature of this recurrent, recurring disease. This is especially true for ER/PR+ women originally diagnosed with cancer in their lymph nodes at the time of their lumpectomy or mastectomy. This fact is not widely circulated.
9) Spit on the memes and schemes. Facebook is littered with the “latest and greatest” cure for metastatic breast cancer. If aspargus, baking soda, vit E, vit C. etc were all so great 40,000 women would not be dying every year.
Bottom line: don’t pass on trashy, stupid sounding information about cancer. Too many people believe this idiocy.
10) Metastatic breast cancer is a complex and misunderstood disease. Men and women can “look” good yet still be walking around with a disease that kills. And that leads me to my last point about metastatic disease:
Be careful about where you donate. Find out if the organization your are automatically donating to actually funds research into metastatic treatment. We have raised enough money for awareness about primary disease. People are more than aware of breast cancer…less aware that this disease recurs in approximately one third of all cases and that metastatic disease is incurable.”
A few links:
Jody’s blog, Women with Cancer
Jody’s obit, written by her family.
Tribute to Jody from BCSM, the online breast cancer social media community she helped found on Twitter, Good Night, Jody
Liz Szabo’s op-ed tribute in USA Today, Voices
Gayle Sulik’s remembrance for the Breast Cancer Consortium, A few words about Jody Schoger
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