How Fabulous Is This Group??

3 August 2017

Alicia Staley and Jody Schoger met on Twitter in 2009. After a series of online interactions, they were inspired to create the #bcsm community. The first #bcsm tweetchat took place on July 4th, 2011.

Alicia and Jody brought together patients, physicians, researchers and others who shared an interest in providing education and support for all impacted by breast cancer. Without Alicia, Jody and the #bcsm community, I would have never met Lori Marx-Rubiner, who died yesterday due to metastatic breast cancer.

Lori and I crossed paths during one of the early #bcsm tweetchats. She was the driving force behind the early LA tweetups, and in 2013 she wrote about one of our get togethers, noting that “it is at once an uneventful and deeply powerful few hours.” Her caption next to our group photo says it all: “How fabulous is this group??”

Shortly after we met online, Lori and I discovered that we lived fairly close to one another. We started meeting every few months for lunch or dinner. She was always very matter of fact and had a great way of breaking down problems or challenging situations.  She was a great listener, and had a wicked sense of humor. After her diagnosis of metastatic breast cancer, we continued to meet, and we often discussed the ironies of life, death and our own mortality. After my close friend and colleague was killed in a freeway accident, she was the first person I turned to when I was ready to open up and talk. As an “expert patient”, she volunteered her time to come to my office for a “lunch and learn” with my staff to discuss some common frustrations that patients experience when trying to navigate the healthcare system, so that they could better understand the patient’s point of view. She was an incredible and inspiring woman and I am so thankful that she was in my life.

When Donna Peach died in 2013, I posted some thoughts about how incredible it was that something like Twitter could bring people together in such a meaningful way. The connections that we make online translate into something very special when we meet “in real life”, or IRL.  The virtual “group hugs” are wonderful, but the IRL hugs are truly magical. Lori and I shared many of those magical hugs.

Rest in peace, Lori. Rest in peace Jody, Donna, and all of the other women and men taken from this world way too soon. You are remembered with love. Thank you to the Universe for bringing Alicia and Jody together online. And thank you to Alicia and Jody, who had the vision to create such a special place for all of us – the fabulous online community that is #bcsm.

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Pinktober

2 October 2016

This post initially appeared on DrAttai.com

October is National Breast Cancer Awareness Month (NBCAM), which means pink is everywhere. Stores start setting out pink merchandise towards the end of September, and the displays often rival Christmas merchandising. How did this happen?

The original pink ribbon was actually peach. A woman by the name of Charlotte Haley made them in her home, and handed them out with cards stating: “The National Cancer Institute annual budget is $1.8 billion, only 5 percent goes for cancer prevention. Help us wake up our legislators and America by wearing this ribbon.” Ms. Haley was then approached by SELF magazine and breast cancer survivor Estee Lauder, who wanted to use the ribbon as part of a breast cancer awareness issue. Ms. Haley turned them down as she didn’t want her efforts to become overly commercialized. As the magazine and Ms. Lauder needed a symbol, the pink ribbon was born. The Susan G. Komen Foundation handed them out at their 1991 race, and in 1992 it officially became the symbol of NBCAM.

Many women who have been treated for breast cancer wear pink to signify their struggles with the disease. Family members and friends often wear pink to show their support of a loved one. For some, wearing pink is an important show of strength and solidarity. However, not everyone feels comfortable with being “branded” in such a way – a patient once asked me “I don’t HAVE to wear pink, do I?” Men with breast cancer have traditionally been left out from such movements, although the pink and blue ribbon now is used for male breast cancer awareness campaigns.

We all want do do something to help end a disease that impacts so many. The NFL goes pink every October, and many organizations host  “save the *** (boobies, tatas, etc)” campaigns, all in the name of breast cancer awareness. Awareness is important – increased awareness is one reason that many women no longer feel embarrassed about going to a physician when they feel a lump in their breast. Not everyone is aware – there are still women and men diagnosed at later stages, especially in minority and underserved populations. But awareness and early detection do not equal cure. Awareness is not enough. Research is needed. Why do some women and men develop breast cancer? Why do some breast cancers spread? Why do some patients respond to treatment and some do not? Why do 40,000 women in the US alone still die due to metastatic breast cancer? We do not have prevention, and we do not have a cure.

10043812_sMoney is needed to fund worthy research projects, initiatives aimed at improving access to care, and support programs. However, pink merchandise is not necessarily the answer – we can’t shop our way out of breast cancer. It is important in October and all year to “think before you pink“. The term “pink washing” has been applied to those organizations who utilize pink for the sole purpose of raising their own brand awareness. A tag noting “in support of breast cancer awareness” sometimes means just that – no dollars donated, just “awareness”. Some of the marketing campaigns even promote products that may be harmful – alcohol, high fat foods, and other substances linked to an increased risk of developing breast cancer.

Directly donating to organizations that perform or fund cancer research is one way to help. Patients with breast cancer also need support services. There are many organizations ranging from large national ones to local community nonprofits that provide a variety of free services such as transportation, counseling, financial aid to cover insurance gaps, and even childcare. Before you donate to a nonprofit organization, first confirm that they are legitimate – Charity Navigator or a similar site can help. In addition, do some basic research – make sure that the organization’s mission is aligned with your preferences. Do you want to help fund education or awareness campaigns, support services, research on metastatic disease, or research on prevention? A quick review of an organization’s mission statement can ensure that you are donating to a cause that you support.

So this fall, think twice about buying those pink breath mints. If you want to make a purchase to honor a loved one, make sure you know whether or not any money will be donated for breast cancer research, education, or support. If you are donating to an organization, make sure that organization is funding programs that you support.

Also realize that you also don’t need to spend a lot of (or any) money to make a difference. Nonprofit organizations and cancer centers are usually happy to have volunteers. If you want to make it more personal, offer to cook meals, do a few loads of laundry or clean the house for someone you know who is being treated for breast cancer. Provide transportation (and company) for appointments. Offer to take someone’s kids for the afternoon so the patient can get some rest. The possibilities are endless.

This October, you can make a difference, and it doesn’t have to involve purchasing a pink kitchen appliance.