Thoughts (Breast Cancer and Endometriosis)

I didn't really know what to title this post.  It feels intensely personal.  It's just some thoughts and observations I've been having as I deal with endometriosis and as I also watch my mother deal (bravely) with breast cancer.  It is wonderful how much support and how much of a sense of community they try to give to these women when they are newly diagnosed, as well as throughout the process.  I've been impressed and surprised along the way with how much generosity there is for women with breast cancer.  She has access to a nutritionist, to breast cancer gatherings, even to a garden, I believe.  My mom received a hand-made blanket to have for her chemo treatment.  These blankets are made by hand and donated to the hospitals for chemo patients.  She received a free wig, which I have seen online at a cost of hundreds of dollars.  Since losing your hair is one of the biggest fears for someone going through chemotherapy, I know a wig doesn't alleviate that fear but having someone available and not having to worry about cost are two less things to worry about and that's huge.  There are even small handmade items throughout the process.  Knitted caps, handmade bookmarks and bracelets. 

 

I think the support that these women receive is important.  While it's not a great community to be a part of, there is still a sense that there is a community for them.  I remember at work we were often given free pink ribbon pins to wear for Breast Cancer Awareness and there was a day to wear jeans (which I always looked forward to) to also show support for Breast Cancer Awareness.  In fact, it is so prevalent that in volleyball, most conferences participate in what is called a "Dig Pink" event where they wear pink jerseys or pink socks, decorate with pink balloons and ribbons, and collect donations for Breast Cancer.  My sister has a shirt that says "Save the TaTas."  Somehow, it became glamorous to support breast cancer.  That support is awesome.  Is it because everyone likes breasts?  Is it because they can come up with cute slogans for breasts?  Breasts are seen as a sign of fertility and associated with child rearing, maybe it is an evolutionary concern.  Is it because with mammograms and regular doctor's appointments breast cancer has the appearance of being much less fatal of a cancer?  Or is it less fatal because of all the money that is given through donations and charities and even colleges collecting money?  What I wonder is how to get that much support for other diseases, like endometriosis?  

I don't have any answers.  I do not want any less for the women with breast cancer, in fact I always want more!  But there are some very positive offerings that I have seen and that made me realize how very different I felt when dealing with endometriosis.  I essentially felt zero sense of community and support at first and while the support came sooner, I didn't really get any sense of community until I began reading other women's blogs online.  Only then did I get a sense that other women were having as hard a time as I am, or for some, an even harder time.  I commented a time ago that endometriosis is like the cancer nobody knows about (without being fatal) but I see now for all the similarities, there are many differences, the least of which is understanding.  For now, this blog is how I am trying to promote awareness about my disease.  At first it felt like an evasion of my privacy to share everything I go though but I've since come to believe that it is that very sense of wanting privacy that makes it hard for people to understand this illness, and possibly many others.  

So I have chosen to show my blog outside of my small circle of friends and family and now I encourage people to share it with everyone they know.  I've gotten over my shyness and even begun to post to my blog to Facebook, which I have been reluctant to do, like I had to come out of my own proverbial closet.  But I think it is important for me to share it to everyone I can reach, if only to share information on a disease of which someone may never have heard.  I think, since I have no money at the moment, that at least I can spread information and knowledge.  I can sign up for Amazon Smile and have my small donations go to funding endometriosis research.  I mean, it seems inherently wrong to not be able to diagnose a disease without surgery.  It creates such a slow process because who wants to voluntarily undergo surgery to see if they MIGHT have a disease?  I would love for someone to invent a better CT scan or MRI or Ultrasound machine that could determine if someone has endometriosis.  I would have even loved being handed a hand-made blanket after surgery when I could be officially diagnosed.  Then I'd belong to some of club.  I might not know all about my club at that time, but I'd know there were people out there who cared enough to make me a blanket as a show of support for my disease.