Hello my dear friends and family,
I know that I don't update this site very much nowadays. I have been using Facebook as the preferred medium for sharing my opinions or references about my experience with Metastatic Breast Cancer. Given that we are on the verge of October, I wanted to ask you all for a favor. Please don't buy pink stuff (T-shirts, mugs, mops, brooms, mixers, etc.) or pink ribbons in the hopes that you are contributing to breast cancer awareness or a cure for breast cancer. There is a great video about the pinkwashing of the breast cancer cause (http://www.theglobeandmail.com/arts/film/pinkwashing-and-the-dark-side-of-breast-cancer-philanthropy...
). Very few of those dollars will ever reach a patient or researcher, but contribute to the so-called awareness that we all have about breast cancer. Well, what exactly are we "aware" of? That we should all get mammograms? That just isn't enough. 40,000 men and women die of breast cancer every year, a statistic that hasn't changed significantly in 20 years, despite our "awareness." I hope that you will all remember that we should all be aware of changes in our bodies (that goes for you too guys), if you find something disturbing, get it checked out by all means. I am supportive of our desire to catch cancer early, but remember that for many of us with advanced disease that just wasn't really an option. Many of my fellow metastatic patients, including myself, didn't even know that they had breast cancer until they were suddenly diagnosed with metastatic disease. Also, in some cases, breast cancer doesn't present as a lump (you can see more about that here: http://abcnews.go.com/Health/breast-cancer-lump/story?id=19639289
If you want to contribute to breast cancer research that could actually lead to a cure for cancer, please consider giving to organizations directly (MD Anderson, American Cancer Society, Metavivor, Metastatic Breast Cancer Network, Inflammatory Breast Cancer Network, etc.). I am about to start a fundraising campaign in the next couple of weeks for MD Anderson that will raise funds specifically for metastatic / advanced breast cancer and will share more about those efforts soon.
As far as my own health, I am living one day at a time, enjoying time with my kids (I can't believe Anya is in kindergarten already - what a blessing!), teaching a really cool class at Rice University (Introductory Research Challenges for freshmen), and continuing with my advocacy work at MD Anderson as I have time. I have a good life, but have learned to appreciate that it is a delicate balance. My body doesn't adjust like it used to, maybe it's age :) or a side effect of treatments, who knows. I get injured much more quickly and take longer to recover. I live from scan to scan (next one in November), hoping that my current treatments are keeping the tumors in check. Yes, I still have tumors, they are small but persistent.
Thank you all for your support over the years. I am so lucky to have made it this far down the road. I was honored to be included on a paper recently that studied patients with metastatic disease (http://www.ncbi.nlm.nih.gov/pubmed/26348887
). The lesson that was found is that if you are lucky enough to reach a No Evidence of Disease (NED) status at some point in your treatment, you have a better chance of living longer with your disease (median survival of 102 mos versus less than 3 years without NED), so I am excited to be part of that cohort. However, I am going to be selfish here, 102 mos or 8.5 years isn't long enough! I am hoping to break the curve in this class, so that I can see my kids grow up.
Just thought I would give you all a shout out and let you know that I am still hanging in here.
Happy Fall to everyone,