Yesterday on Valentine’s Day I had my four month oncologist appointment. I always have medical stuff on notable dates. First oncologist appointment on my wedding anniversary, first round of chemo on my 50th birthday. Thankfully my CBC panel came back normal so still NED (no evidence of disease). We talked about the Tamoxifen I’m taking and since he also checked my estrogen levels he was able to confirm I’m in full blown menopause. This means I switch from Tamoxifen to an aromatase inhibitor, Letrozole starting Monday. I told him about my achy joints and he told me to stretch and exercise which seems to be pretty much the cure for all of a body’s ills. I know I’m getting old which means my bones are more creaky but I creak and crack with every move I make. How did I get to be 50? When did this happen? I’m pretty sure a couple years ago I was 30. At least it seems that way. I know some of the joint pain is attributable to the Tamoxifen, but still.
I’ve mentioned I belong to some closed Facebook groups of ladies in various stages of their journeys with breast cancer. The largest one was started last summer/fall by Lisa Schwartz, MD, a radiation oncologist in California. She infrequently posted brief videos of different topics to the page but didn’t really interact with the group other than to advertise her on-line community called the Breast Cancer Collective which was $29 per month to join. I have no idea if anyone signed up for that but by all accounts it just looked like it offered information anyone with access to google could obtain. Meanwhile, her Facebook group blew up to over 7,000 women across the world. It was pretty much the most positive experience I’ve ever had on social media. Women from all walks of life and all corners of the world were offering strength, support, love and compassion to each other as we were all in the same fucked up boat, so to speak. About two weeks ago, Dr. Lisa posted that the group had grown so large it was taking more work than she anticipated and she was going to start charging $5 per month per person effective the following week. Now $5 per month for some people is a lot. I could have afforded it but that’s not the point. It’s the principle. I belong to other Facebook groups with high membership that are free. After a few women posted (respectfully) they were leaving the group Dr. Lisa shut it down right then and there and went totally dark. 7,000 women suddenly out in the cold without a way to contact each other. Luckily the members’ names were still visible for a short period afterward and some awesome ladies started two new groups by contacting members of the old group, which have now grown to 330 and 270 members, respectively. It appears Dr. Lisa reopened the original group and it has 73 members (who I guess don’t mind paying $5/month and also subsidizing a physician’s salary with their breast cancer). My point is, this is about the shittiest thing I’ve seen in a long time. My theory, for what it’s worth is that she hoped women in the Facebook group would join her Breast Cancer Collective Community for $29 per month. I doubt anyone did because as I said, the value of the product she offered was not commensurate with the cost. So then she decides to charge her potential cash cow of 7,000 women, $5 per month. Even if she only gets 1,000 ladies to agree to pay, she’s then making $5K per month just for moderating a Facebook group of women dealing with breast cancer. I realize this is probably perfectly legal but is it ethical? And to shut it down without warning, knowing thousands of breast cancer survivors who’d built friendships would probably lose touch with one another? I’m so thankful I was able to stay in touch and join the new groups but I wonder about the thousands of others who have no idea what happened or how to reconnect. Shame on you Dr. Lisa, and I use therm “Dr.” loosely.
In happier news I authored a two part piece for a site called “I’m Taking Charge” and you can read it here: