Silence. How can my head be silent? When I think about having cancer, my mind freezes. It’s hard to comprehend that this is ME . That I’M the one with cancer. Why doesn’t my mind race? Why don’t doesn’t my mind jump around from possibilities or even images of my breast? Nothing. It’s strange. I suppose it’s still the shock of it all. I don’t know. I do know that there is no right way to feel or react. Everyone is different, of course, but I do have an emotional gut reaction of anger and sadness. My thoughts may be silent, but emotionally I’m everywhere. And unfortunately I guess I’m less predictable emotionally than what I’d like to be. More on that I’m a different blog. That’s a subject all to itself.

First off, I would like to tell you one of the things I’m angry about. For some reason, inflammatory Breast Cancer is ignored. I had never heard of it, and neither had anyone I told. None of my friends or family members, and it’s the most deadly breast cancer. That angers me. Breast cancer, unfortunately, is all too common. There is breast cancer awareness everywhere and yet, IBC is never mentioned. It’s rare, too. So, I can’t even talk to someone in person about my experience, unlike so many women out there that have a sense of community. I feel like an outsider. I’m different. I feel alone. Heck, I can only find between 5-10 t-shirts that have inflammatory breast cancer written on them, yet I am surrounded by breast cancer awareness. It just doesn’t include Inflammatory Breast Cancer. I educate anyone who will listen about inflammatory breast cancer and it’s always the same reaction. They had no idea and had never heard of it. But they are concerned and will go home and read more about it, and tell their loved ones. I just don’t understand why it is not talked about. It pisses me off and I feel like I should do something about it. So, I am creating this blog. It may not change the world, but, it may help someone out there not feel so alone.

I created this blog to do three things.

  • Raise awareness for Inflammatory Breast Cancer. It’s the most deadly breast cancer, but no one talks about it. There is breast cancer awareness everywhere, and we are told to do self breast exams and don’t miss your mammograms. While this is obviously good information, they are missing some information. Often, IBC is not detectable through mammograms. It grows in layers or webs across your breast so it just appears thicker. This isn’t seen well in mammograms. Ive only been told to look for lumps. We aren’t told skin changes should be immediately checked into. The funding is there for breast cancer awareness. So, why haven’t we been properly educated about IBC? We need more awareness about IBC.
  • Put more updated information about IBC out there. When someone googles Inflammatory Breast Cancer, some scary statistics show up. Because statistics are always based on years of data, obviously from the past, and new breakthroughs are being made for IBC, these stats are outdated. I’m on a journey to find out the true updated information because treatment changes have improved the survival rates. I’m also going to share as much information as I learn through my journey as well.
  • I’m also hoping this blog helps women -or men- like me. Real people who are diagnosed with IBC. People who search online for some sense of community. Someone who want to see what their treatment may be like or what someone else’s IBC cancer journey looks like. I have never felt so alone. Which makes no sense because I am surrounded by people who love me. I have a family. The typical family I guess. I am married to a wonderful, supportive husband, who is doing everything to make me feel beautiful, supported and loved. He always tries to make me smile and since I am easily amused, it usually works. I also have two crazy boys, ages 8 and 10. My parents live nearby and I see them at least twice a week. Furthermore, my mother-in-law was diagnosed with stage 2 breast cancer about 4-5 months before me. She also lives in the next town. I shouldn’t feel so isolated, especially with someone so close to me going through breast cancer as well…But, I do. I can’t go to lunch with someone who has IBC and talk one on one with them about it. I am not sure why I feel so isolated, truthfully. Maybe because IBC generally affects younger women, whom are maybe at different points in their lives, with different worries about children and careers and spouses and money, etc. IBC in the long run is just different too. In truth, we do have a higher mortality rate, and reoccurrence rate. It’s scarier, I guess. I would love this blog to help not only those who do not have a place to feel included and educated with current information, but I want and need this blog to give me my own outlet. A journal, I guess, of all the insanity that comes with this damn cancer on the inside and the outside. Hopefully, it gives someone comfort who reads it, or at least some sense of sisterhood.

Good company in a journey makes the way seem shorter. — Izaak Walton

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