Hi Everybody!
You might have noticed, I’m a little social media crazy lately! Over the years, I’ve had a love/hate relationship with social media. As I’ve had time to wrap my head around my diagnosis, I first tip-toed into Facebook support groups when I couldn’t find one in the Phoenix area to attend in person. In previous blogs I’ve mentioned my hesitation to Google and be a part of any groups. I have gotten over this hesitation and a strong desire for advocacy has taken its place!
I want to explain my recent seemingly non-stop posts to the matter. Obviously I have become quite passionate. The other day I posted that I hope I do not lose any friends or support due to my posting. I know it’s a tough and sad topic. I also know that so many have been affected by this disease. As I’ve said before, we all know someone. The things I didn’t realize until recently, are things I should have known when I had early stage breast cancer 2 years ago but nobody thought to inform me or I might have made different decisions in my treatment. Many of you know that I opted not to take the drug Tamoxifen for the 5-10 recommended years. Whether that would have made a difference to my situation now is anybody’s guess but had I been given all the statistics I know now, I might have changed my mind. My doctors tell me it may have delayed the onset of my cancer spread, but the beast that cancer is, there is really no way of knowing. Likewise, I could have taken the pill and still had spread of cancer when I did.
I did know that 1 in 8 women will get breast cancer. I did know that it could recur. I DID NOT KNOW that 1 in 3 people will become metastatic. I DID NOT KNOW this was terminal. Perhaps, shame on me but shame on my doctors too.
Here is what I was told...not just by the doctors, but also friends. You are lucky you caught it early. You are lucky that the type of cancer you have isn’t as aggressive as others. You are lucky it didn’t spread to your lymph nodes. You are lucky you can have a lumpectomy and not have to have your breasts lobbed off. You are lucky to find it early=save your life. Well now, look what we have here...I’m just so fucking lucky.
I can’t go back now. As I face my certain death of this disease, I feel compelled to do something. First, I can make sure that all my loved ones are fully informed so they can help the “someone” they might know. Secondly, I can advocate for more research money to go toward MBC.
In the 10 months since my diagnosis, I have had so many offers of help. I am grateful for each and every one of them and that is why I have been asking for help on social media. I love you and hope you’ll consider one or all of these:
1. METAvivor is a non-profit in which 100% of donations go to research. The last post I made is about Novartis donating $20 per post (you have to make your post public) using the hashtag #KissThis4MBC. This can be on any social platform and you can ask your tribe to share it too. They will donate up to $250,000 to METAvivor.
2. Watch this 2 minute and 41 second YouTube video: https://youtu.be/Y9Vjk2m__yg The end of the video gives 3 options to help. If you’d consider one or all, I’d be grateful. Please share the video!
3. SHARE THIS BLOG & Ask your friends/tribe to help with any of these!
I have shared a few things that are anti Susan G Komen. You know the pink ribbon bullshit. The “Race for the Cure”? I am not in anyway knocking anyone who supports or has participated in these things. I just want to share why I have a different opinion that I used to about this. I and many others are grateful for the message of the Komen empire to get our boobies checked. They have done many things great things! What I mostly believe now is that all the pink ribbon stuff is just marketing and whatever they slap a ribbon on is designed to make us think we are making a difference. It’s big business and big profits and spending the majority of their supporters money on “public awareness”. That message is out. WE GET IT! Most have fallen into the perception that early detection saves lives...that there isn’t much more to the story. BUT, what is the recommended age for mammograms? 50!! I found my cancer early and I found it on my own because I wasn’t due to start having mammograms for 7 more years. I have no family history. The public perception is that it’s mostly older women who get breast cancer and if you catch it early, you can save your life. Hmmm... WHAT THE HECK?? I’ll get off my soapbox here...much more I can say but you get the gist of it.
Lastly, as much as I have loved my online support groups, the love, support, and information I glean, I am literally reading about someone’s passing away each day. A beautiful person who has been put through the ringer to try and fight this disease, who has friends and family that will miss her every day. 116 people per day. The median survival is 3 years. I am not ready to die. People make history. I am one voice and I just can’t help myself to keep raising it and imploring others to join me. One day WE can make a difference if WE choose to do something. I have chosen to and I would love for anyone who wants to join me. Myself and too many others are literally dying for a cure.
Much love!
XOXO
#fightingirl #cancersucks #cure4komen #mbc #metastaticbreastcancer #stage4needsmore #metavivor #metup #kissthis4mbc
