Social media can be difficult for people to understand. It may seem strange to connect with those who live across the country, or across the world. It may be hard to believe that you can build true relationships with people you rarely (or never) see in person. Certainly not every person you meet online will become a lifelong friend, but I met my husband online, so I know that it can be the basis of a deep and long relationship. What happens more often, however, is that you build other types of bonds. You grow to care about people who made you laugh in a difficult moment, or helped when you need advice. You may have realized they were kindred spirits through the writing on their blog, or their posts on Facebook. Perhaps they were tweeting about the same silly TV show, or doling out parenting advice. Sometimes you meet them in person and immediately make a connection. Social media isn’t all that different from “the real world” in that way. You meet people, you learn about them, and you grow to care.
Dr. Susan Niebur, also known to her social media friends as WhyMommy, is one of those people I grew to care about. I did meet her once in person, but mainly know her from her activities online. She blogged at Toddler Planet about her family and, more increasingly, her own health. When I learned that she passed away yesterday, I was heartbroken. She had been fighting inflammatory breast cancer (IBC) for nearly five years and they had recently brought in hospice. I knew it was just a matter of time, but I guess you’re never really prepared for this sort of thing. My heart goes out to her husband and two young kids, who are very close in age to my own children.
The truth is that there are other bloggers who knew Susan better than I did. I’ve decided to leave the loving tributes to them and instead, pass along Susan’s message. In addition to being a wife and mother, Susan was an astrophysicist, activist, and crusader against IBC. Since Inflammatory Breast Cancer isn’t discussed very often, I want to share it with readers and ask you to pass the information along. You could save a life. I’m sure that Susan has saved, or at least prolonged, numerous lives through her honest blogging and tireless community education.
We have always been taught to search for a lump in the breast, but Inflammatory Breast Cancer doesn’t always present as a lump. Instead, it can cause a redness, pain, heat, swelling, pitting (similar to the skin of an orange) and inverted nipples. It often presents in younger woman than other breast cancers and is highly aggressive. It can quickly spread to other organs. Susan had a wonderful IBC page with basic info, as well as links to other sources for information. Please take a moment to read more.
Susan’s message was a simple one. If you see any changes in your breast, if anything seems “not quite right,” get it checked out. She was diagnosed in June, 2007. According to her website, only 25-50% of women diagnosed with IBC live past 5 years. You may have seen my recent post about catching up on my own health concerns, and I want to reiterate how important it is to take care of yourself. I’ll repeat what I said there:
…please take a moment to make the call for yourself. Call your doctor. Call a local clinic. Just call and get yourself checked out. It is scary to think that something might be wrong. On the other hand, if you can stay on top of your health, you significantly increase their ability to fix anything that does go wrong.
In honor of Susan, please share information about IBC with your friends.
A lovely tribute and a valuable reminder for everyone. One trick to stay on track with your health care once you do have that first appointment for a checkup – make an appointment for your next visit on the way out, even if it is a year away.
thank you for sharing her story and this information with us.
What a beautiful tribute, Christy. Thank you for reminding us all about friends and frienship no matter how it happens that people connect.
The message about taking care of yourself is an important one for people to hear and act on. We really do have just one life and we need to make it the best we can. Auntie K
Excellent post. Thank you. This is a message for all of us. It sure hit home with me.